Autism Guidebook
for Washington State
A Resource for Individuals, Families, and Professionals
July 21, 2016
ii iii
Individuals with Autism Spectrum Disorders (ASD) require
individually designed interventions that meet the distinct
need of the person. It is important that parents, health care,
social services and school professionals, working together
as a team, select teaching strategies and methods based on
peer reviewed, empirically based, valid evidence. We are at a
time in history when we have this knowledge and evidence.
To say that a methodology is grounded in scientically based
research means there is reliable, independent evidence and
current knowledge that a given program or practice works
for an individual with autism. Each individual with autism
deserves no less.
iv v
The Autism Task Force is grateful to both
the Ohio Task Force and the Ohio Parent’s
Group for their hard work, the creation of
these documents, and permission to use
their products as a basis for this Washington
State Autism guidebook. Additionally, the
ATF extends our thanks to Washington
State’s Governor Christine Gregoire and
the Washington Legislature for recognizing
the need and establishing the Caring for
Washington Individuals with Autism Task
Force. This manual is a direct result of their
concern and recommendations.
vi vii
Acknowledgements
Autism Task Force Members
Soa Aragon, JD, RN - Department of Health
Lauri Berreman, MEd - Local School District Representative
Lou Colwell, Ed.D - Ofce of Superintendent of Public Instruction
Geraldine Dawson, PhD - University of Washington Autism Center
Monica Meyer - Education Services District, Parent
Felice Orlich, PhD - University of Washington Autism Center, Parent
Senator Marilyn Rasmussen - Senate Democratic Caucus, Grandparent
Senator Pam Roach - Senate Republican Caucus, Grandparent
Linda Rolfe, MSW - Department of Social and Health Services, Division of
Developmental Disabilities
Ilene Schwartz, PhD - University of Washington
Dawn Sidell, RN, BSN - Northwest Autism Center, Parent
Diana Stadden - Autism Society of Washington & Arc of Washington, Parent
Carolyn Taylor, MS - Autism Outreach Project, Parent
Representative Maureen Walsh - House Republican Caucus, Sister
Representative Brendan Williams - House Democratic Caucus, Uncle
Washington State Department of Health Staff
Maria Nardella, MA, RD, CD - Children with Special Health Care Needs
Program
Carol L. Dean, MPH - Children with Special Health Care Needs Program, ATF
Project Coordinator
Rebecca Ross - Community and Family Health Graphic Designer
Candi Wines, MPH - Ofce of Maternal and Child Health
Riley Peters, PhD - Ofce Director, Ofce of Maternal and Child Health
Leslie Carroll, MUP - Children with Special Health Care Needs Program,
Parent
Christy Davis - Children with Special Health Care Needs Program Autism
Support
viii ix
Regional Coalition
Hubs
Co-chairs: Monica
Meyer/Felice Orlich
Linda Barnhart
Lauri Berreman
Terry Buck
Cindy Carroll
Sue Elliott
Arzu Forough
Erin Lynch
Carol L. Miller
Senator Marilyn
Rasmussen
Linda Rolfe
Ronda Schelvan
Ilene Schwartz
Dawn Sidell
Diana Stadden
Carolyn Taylor
Glenn Tripp
ID/Tracking
Co-chair: Geraldine
Dawson/Nancy
Simon
Jane Campbell
Victoria T. Crescenzi
Kathrin Fortner
Katie Hutchinson
Carol L. Dean
Felice Orlich
Kate Orville
Carolyn Taylor
Samuel H. Zinner
Family-Centered Care
Co-chair: Dawn Sidell/
Diana Stadden
Crystal Blanco
Don Burbank
Leslie Carroll
Tracie Day-Hoppis
Angela Dawson
Sue Elliott
Debra Finck
Arzu Forough
Patty Gee
Alan Gill
Sally James
Erin Lynch
Carol L. Miller
Lance Morehouse
Cami Nelson
Felice Orlich
Helen Powell
Carolyn Taylor
Alan Unis
Education
Co-chairs: Lauri
Berreman/Carolyn
Taylor
Monique Bartoldus
Alison Clark
Lou Colwell
Arzu Forough
Linda Hawkins
Shelly Marquett
Monica Meyer
Gretchen Schmidt
Mertes
Carol L. Miller
Linda Rolfe
Nancy Rosenburg
Ilene Schwartz
Ronda Schelvan
C. Milani Smith
Contents
History
Autism Lifespan Resource Tree
Autism Lifespan Resource Directory
Chapter 1 User Guide
Purpose and Source ..............................1
Introduction .................................1
How to Use This Document ........................2
Description ..................................2
Recommended Process..........................3
What this Document is NOT ......................3
Chapter 2 Introduction to Autism
What is Autism or Autism Spectrum Disorder?............5
Chapter 3 Dening Autism
Pervasive Developmental Disorders Categories ...........7
Categories and Diagnostic Criterias .................7
Other Members of the PDD Category ..................8
Individual with Disabilities Education Act (IDEA) ..........9
Washington State...............................10
Diagnostic and Statistical Manual of Mental Disorders, IV TR . 11
Chapter 4 Medical Aspects
Introduction ..................................15
Screening and Diagnosis ..........................15
Diagnostics and Screening Instruments ...............19
Diagnostic Tools ................................19
Asperger Syndrome Diagnostic Scale (ASDS) .........19
Autism Diagnostic Interview-Revised (ADI-R) .........19
Autism Diagnostic Observation Scale (ADOS) .........20
Gilliam Autism Rating Scale (GARS) ................20
Screening Tools ................................20
Autism Behavior Checklist (ABC) ..................20
Autism Screening Instrument of Educational Planning ...20
Checklist for Autism in Toddlers (CHAT) .............20
Autism Task Force Subcommittee Members
x xi
Modied Checklist for Autism in Toddlers (M-CHAT) .....21
Pervasive Developmental Disorder Screening Test (PDDST) 21
Psychological Prole- Revised ....................21
Adolescent and Adult Psychoeducational Prole (AAPEP) . 21
Functional Assessments ..........................22
Real Life Rating Scale..........................22
Promotional Training Programs .....................22
First Signs Program ...........................22
Learn the Signs. Act Early.......................23
American Academy of Pediatrics (AAP) Toolkit .........24
Medical Intervention for Individuals with ASD ...........24
What is a Medical Home? .......................24
Treatment Goals .............................25
Medical Areas To Be Addressed .....................25
Accidental Injury .............................25
Aggression .................................26
Anxiety....................................26
Attention Decit/Hyperactivity Signs and Symptoms ....26
Dental Care ................................26
Elopement (Wandering) ........................27
Feeding/Nutrition.............................28
Mood Disorder...............................28
Obsessive/Compulsive and Severe Ritualistic Patterned Behavior 29
Puberty ...................................29
Psychiatric Disorders ..........................29
Seizures ...................................30
Self-Injurious Behavior.........................30
Sensory Issues ..............................31
Sleep .....................................31
Stereotypies ................................31
Tics ......................................32
Medications.................................32
Alternative and Complementary Therapies ...........32
Chapter 5 Essential Components of Instruction
Considerations.................................35
Learning Styles of Individuals with ASD .............36
Purpose of Assessment.........................38
Aspects of a Learning Environment ................39
Focus of Interventions-All Ages .....................39
Attention ..................................40
Imitation ..................................40
Communication ..............................40
Socialization ................................41
Cognition ..................................41
Purposeful Play/Recreation/Leisure/Physical Exercise ....42
Self-Determination............................42
Essential Life Skills ...........................42
Transition ..................................43
Sexuality-as determined by student’s team...........43
Behavior...................................43
Description of Teaching Strategies and Methodologies: Data Driven 44
Applied Behavior Analysis .......................44
CAPS (Comprehensive Autism Planning System) .......45
Discrete Trial Training..........................45
Social Thinking ..............................46
TEACCH ...................................47
Communication ..............................47
Common Communication Options .................48
Chapter 6 Essential Components of an Instructional Program
Essential Component 1—Family Involvement............51
Effective Communication .......................53
Team Process ...............................53
Information and Advocacy ......................54
Essential Component 2—Earliest Intervention ...........54
Essential Component 3—Intensity ...................55
Essential Component 4—Predictability and Structure ......56
Essential Component 5—Generalization of Skills .........57
Essential Component 6—Functional Analysis of Behaviors ...58
Behaviors Serve a Function......................59
Functional Analysis of Behavior and Behavior Interventions 59
Behaviors Change Over Time ....................60
Inuences on Behavior.........................61
Stress/Anxiety.............................61
Physiological Factors ........................61
xii xiii
Sensory Sensitivities ........................61
Positive Behavior Support .......................62
Behaviors Require Brainstorming and Teamwork .......63
Essential Component 7—Communication...............64
Modications................................65
Strategies..................................65
Essential Component 8—Assistive Technology ...........66
“No” Tech Tools ..............................67
Low Tech Supports............................67
Mid Tech Tools ...............................67
High Tech Tools ..............................67
Essential Component 9—Sensory Motor Processing .......68
Essential Component 10—Social, Emotional, and Sensory Regulation
(Modulation) ................................71
Essential Component 11—Social Development...........72
Essential Component 12—Inclusion with Typically Developing Peers 75
Essential Component 13—Progress Monitoring...........76
Essential Component 14—Supported Transitions Across Multiple
Environments ...............................76
Transition Overview ...........................76
Essential Component 15—Sexuality ..................78
Common Concerns Regarding Sexuality and ASD ......79
Sexuality Teaching Techniques ...................79
Essential Component 16—Lifelong Support .............81
Chapter 7 Community Transition
School to Adulthood .............................84
Overview ..................................84
Components to Achieve ..........................85
Middle School: Start Transition Planning .............86
High School: Dene Career and Vocational Goals.......86
Elements Not to be Overlooked ...................86
Education and Training Prior to Employment ..........87
Practical Tips for Transitions to Work after High School ....88
Getting Prepared .............................88
Reaching Out..................................90
Identifying and Maintaining Supports ...............91
Strategies..................................91
Other Issues to Consider..........................92
Practical Tips for Transitioning to Post Secondary Education after High
School ....................................93
Important Considerations For Postsecondary Transition ..94
Chapter 8 Beyond Academics—Future Planning Issues
Quality of Life .................................97
Lifestyle Planning—Written Instructions ...............98
Personal Futures Planning.......................99
Establishing an Advisory Team.....................100
Guardianship .................................101
Estate Planning ...............................101
Establishing a Trust ............................102
Chapter 9 Autism Awareness Training in the Community
Training Needs ...............................105
Chapter 10 Advocacy
Levels of Advocacy.............................109
1. Advocating for children .....................109
2. Sharing information with other parents ..........109
3. Supporting a parent in a service planning meeting ..109
4. Participating in activities to inuence how services are delivered 109
5. Encouraging a child to advocate for himself . . . . . . . 110
Where To Advocate ............................110
Education .................................110
Medical...................................110
Social Services .............................110
The Importance of Parent-to-Parent Support in Advocacy .. 111
Various Ways To Advocate: Home, School, and Community 112
Tips for Talking with Leaders ....................113
Grassroots Advocacy ...........................113
Awareness Campaigns ..........................114
Methods of Spreading Autism Awareness .............114
Appendices
1. Child Find Information ........................119
Washington Administrative Code (WAC) ...........119
Early Intervention Program (Part C)...............120
xiv 1
2. Washington’s System of Services for Individuals With Autism Spectrum
Disorder Ages Birth To Three and Their Families ......123
Early Intervention-Birth Through Two..............123
3. Special Education- Three Through Five .............125
4. Least Restrictive Environment (LRE) ...............127
5. Inclusion ..................................129
6. Functional Behavioral Assessment ................131
7. Instructional Accommodations and Modications ......137
8. Education Best Practice Guideline Check List . . . . . . . . . 143
9. Implications for the Education System .............149
10. Choosing Treatment Options ...................153
11. American Academy of Pediatrics: Autism Clinical Guidelines 155
12. American Academy of Neurology: Guideline Summary For
Clinicians .................................157
13. Tips for Making an Oral Care Visit Successful for the Client with
Autism ...................................161
14. Frequently Used Terminology ...................165
15. References and Resources .....................175
16. Getting Connected: Internet and Phone ...........195
Asperger’s Syndrome .........................195
Autism Diagnostics ..........................195
Autism Organizations .........................195
Autism Research ............................196
Bookstores and Videos .......................196
College Information ..........................197
Education .................................197
Federal Agencies ............................197
Other Organizations ..........................198
Special Education Law ........................199
State Autism Hubs...........................199
Transition .................................199
Washington State Agencies .....................200
Department of Health (DOH)..................200
Department of Social and Health Services (DSHS)...200
Ofce of Superintendent of Public Instruction ......201
University of Washington ...................201
History
This document was developed through the efforts of the Caring for
Washington Individuals with Autism Task Force (ATF), a Governor appointed
group comprised of parents and professionals, established in 2005 by the
Washington State Legislature. The ATF gathered information and consulted
with experts and individuals with Autism Spectrum Disorders (ASD) to
inform the state and public on:
Autism services needed
Autism rates
Access to care
Effectiveness of current services
Other issues or concerns needed to provide sound policy
recommendations
Thirty-one specic recommendations emerged from the work calling for
improvement of care and outcomes for individuals with ASD.
Broad in nature, these endorsements encompass needed change in
systems of infrastructure, treatment, training, and funding in Washington
State. Additional individuals provided assistance to develop some of
the recommendations by joining subcommittees. The subcommittees
focused specically on plans for Regional Networks, Family-Centered Care,
Identication and Tracking, and Education. The combined effort resulted
in implementation plans for priority recommendations, one of which was
the development of an autism guidebook for individuals with autism—birth
through lifespan, for Washington State.
This guidebook is one of the thirty-one recommendations made by the task
force in their 2006 report. An additional mandate of the 2007 Legislature
directed the ATF and DOH to produce the manual. Funds to print the
guidebook were provided under Substitute Senate Bill 6743 in 2008.
The Autism Guidebook for Washington State: A Resource for Individuals,
Families, and Professionals, is based on the model of the Service Guidelines
for Individuals with Autism Spectrum Disorder/Pervasive Developmental
Disorder (ASD/PDD) Birth through Twenty-One (2004) and some additional
content from the 2007 Ohio’s Parent Guide to Autism Spectrum Disorders.
Ohio graciously gave us permission to use their guidebooks as a starting
point for this Washington State book. We would like to acknowledge Ohio’s
willingness to share their resources with a statement from Kay Treanor of
the Ohio Developmental Disabilities Council:
2 3 4
The Service Guidelines originated as the result of the dedication of
many knowledgeable people in Ohio who met as a task force and
volunteered countless hours over several years to bring this information
together. Its purpose is to provide information that will help families,
educators, medical professionals, and service providers make informed
decisions about children and young adults with autism or other pervasive
developmental disorders. It provides recommendations as to best
practices for both assessment and the provision of treatment and care
for this rapidly growing population, without endorsing any one treatment
methodology. It is our hope that you too will nd this information
benecial
Kay Treanor, ODDC, 2008
The ATF experts spent considerable time reviewing sections on various topics
and then blending new evidence based information and rewriting to produce
a guidebook double the size of the original Ohio book. The task force
made it state specic, brought the information up to date, lled in gaps in
essential information, and added references to all. It is important for families
and professionals who struggle to understand the complexities of ASD to
know exactly where the information originated. The ATF created a focus
that provides familiarity with best practices in assessment, the provision
of treatment and care, and some understanding of the arrangement and
interrelationships of agency systems, laws, and services that apply.
This document contains some information on resources available in the
state. These can be found in the Autism Lifespan Resource Tree, a two-page
document designed as a convenient public reference to accessible services
and supports. Another location with internet addresses and some phone
numbers can be found in Appendix 16, Getting Connected. Please be advised
that the names, numbers, and addresses in both of these resources are as
complete and accurate as possible at this point in time of publication.
Autism Lifespan Resource Tree
Washington Statewide Services and Support for Individuals with Suspected or Known Autism Spectrum Disorders
Detailed contact information (Autism Lifespan Resource Directory) is provided on the back page of this insert.
5 6
American Academy of Pediatricians
Referral Service (website)
Locate a AAP member in your area
Phone: (847) 434-4400
www.healthychildren.org/
Arc of Washington State
Advocacy and support for people with
developmental disabilities and their
families re: birth to three services,
special education, employment,
residential supports, health care,
transportation, respite and inclusion.
2638 State Avenue NE
Olympia, WA 98506
Phone: (360) 357-5596
Fax: (360) 357-3279
Toll Free: (888) 754-8798
Email: [email protected]
www.arcwa.org
Autism Outreach Project
Information, demographic data,
referrals, and training on best
practices in identication and program
development for students with autism
spectrum disorders to WA families,
schools, and agencies.
Northwest ESD 189
1601 R Avenue
Anacortes WA 98221
Phone: (888)-704-9633
Email: [email protected]
www.nwesd.org/autism/
Autism Society of Washington
Advocacy, public awareness, education
& research related to autism. Local
chapters throughout state.
1101 Eastside Street, Suite B
Olympia, WA 98501
Phone:(888) 279-4968
Email: [email protected]
Listserve:listserve@autismsocietyofwa.
org
www.autismsocietyofwa.org
Autism Speaks of Washington State
National autism organization with state
representation
Email: WashingtonStateAdvocacy@
autismspeaks.org
www.autismspeaks.org/
Boyer Children’s Clinic
Therapy and early childhood educational
facility serving children from birth to
teen who have neromuscular disorders
or delay in development.
1850 Boyer Ave E
Seattle, WA 98122
Phone: (206) 325-8477
Fax: (206) 323-1385
www.boyercc.org
Center for Change in Transition
Services
Improves post-school outcomes for
individuals with disabilities in WA State
through resources, training and technical
assistance.
Seattle University - College of Education
PO Box 222000
Seattle, WA 98122
Phone: (206) 296-6494
Email: [email protected]
http://www.seattleu.edu/ccts/
Center for Children with Special Needs
Find information on diagnoses, organize
medical information with a Care
Notebook, create a plan of care, nd
support through others with similar
experiences, or look up community-
based services
PO Box 5371, CW8-6
Seattle, WA 98145
Phone: (206) 884-5735
Fax: (206) 884-5741
Website: http://www.cshcn.org
Children’s Village
Family support and clinical and education
services to children with disabilities.
3801 Kern Road
Yakima, WA 98502
Phone: (509) 574-3200
Fax: (509) 574-3210
Toll Free: (800) 745-1077
www.yakimachildrensvillage.org
C.A.P.A. (Community Alternatives for
People with Autism)
Provides tenant support services,
supported employment, community
access, job placement and vocational
assessment to adults with autism.
12001 Pacic Avenue, #201,202
Tacoma, WA 98444
CAPA: (253) 536-2339
Keystone: (253) 536-6559
Fax: (253) 531-1365
Email: [email protected]
Developmental Disabilities Council
(DDC) for Washington State
Appointed by the Governor to promote
a comprehensive system of services,
and serve as an advocate and a
planning body for WA State citizens with
developmental disabilities.
2600 Martin Way, Suite F
PO Box 48314
Olympia, WA 98504-4473
Toll Free: (800) 634-4473
Disability Rights of Washington (DRW)
Supports and pursues justice on matters
related to human & legal rights for
individuals with disabilities
315 5th Ave. So., Suite 850
Seattle, WA 98104
Phone: (206) 324-1521
Fax: (206) 957-0729
Toll Free: (800) 562-2702
TTY: (800) 905-0209
Email: [email protected]
http://www.disabilityrightswa.org
DO-IT (Disabilities, Opportunities,
Internetworking, and Technology)
University of Washington
Increase the successful participation of
individuals with disabilities in challenging
academic
programs in science, engineering,
mathematics, technology and others.
PO Box 354842
Seattle, WA 98195-4842
Phone: (206) 685-3648 / TTY
Fax: (206) 221-4171
Toll Free: (888) 972-3648
Email: doit@uw.edu
www.washington.edu/doit/
DSHS-Department of Social and
Health Services for Washington State
Multi-service agency providing
protection, comfort, food assistance,
nancial aid, medical care and other
services to WA children, families,
vulnerable adults and seniors.
Contact DSHS Constituent Services
PO Box 45130
Olympia, WA 98504-5130
1-800-737-0617 for Washington State
http://www.dshs.wa.gov/
DSHS-Aging and Long Term Support
Administration
Serves adults with chronic illnesses or
conditions and people of all ages with
developmental disabilities. Go to website
to nd Local Ofces.
4450 10th Ave SE
Lacey, WA 98503
Phone: (360) 725-2300
http://www.altsa.dshs.wa.gov/
DSHS-Division of Developmental
Disabilities (DDD) Central Ofce
Assists WA State individuals with
developmental disabilities and their
families to obtain services and supports.
PO Box 45310
Olympia, WA 98504-5310
Phone: (360) 725-3413
Fax: (360) 407-0955
TTY: (360) 902-8455
http://www.dshs.wa.gov/ddd/
DSHS-Mental Health Services and
Information
Serves those with mental illnesses or
mental health crises who are without
nancial resources to access care.
Contact for list of regional centers.
1115 Washington St.
Olympia, WA 98504-5320
Phone: (360) 902-8070
Toll Free: (800) 446-0259
http://www.dshs.wa.gov/dbhr/mh_
information.shtml
DSHS-- Division of Vocational
Rehabilitation (DVR)
Employment-related services to
individuals with disabilities who want to
work but need assistance.
PO Box 45340
Olympia, WA 98504-5340
Phone: (800) 637-5627
Fax: (360) 438-8007
TTY: (360) 725-3636
http://www.dshs.wa.gov/dvr/
DSHS: Residential Services Under
DDD
Phone: (360) 725-3413
To apply/get services log onto
www.dshs.wa.gov/ddd/eligible.shtml
To nd a local ofce log onto:
www.dshs.wa.gov/ddd/contacts.shtml
Easter Seals of Washington State
Provides variety of services to ensure
equal opportunities
200 W. Mercer St., Suite 210-E
Seattle, WA 98119
Phone: (206) 281-5700 / TTY
Fax: (206) 284-0938
www.easterseals.com/washington
Educational Service District 112
Autism Cadre
Provides training and education in best
practices for education children with
autism
2500 NE 65th Avenue
Vancouver, WA 98661
Phone: (360)750-7500
www.esd112.org
Early Support for Infants and
Toddlers-Birth to Age 3 Department of
Early Learning
Early intervention services for eligible
children from bith to age 3 and families.
PO Box 40970
Olympia, WA 98504
Phone: (360) 725-3500
Fax: (360) 725-4925
Toll Free: (866) 482-4325
www.del.wa.gov/developmental/esit/
default.aspx
Familiy to Family Health Information
Center
Individual information on how to
advocate for your child in the health
care system and resources available in
Washington state.
6136 So. 12th St
Tacoma, WA 98465
Phone: (253) 565-2266
Fax: (253) 566-8052
Toll Free: (800) 5-PARENT
www.familyvoicesofwashington.com
Father’s Network of WA State
Supports fathers and families raising
children with special health care needs
and developmental disabilities.
16120 N.E. Eight Street
Bellevue, WA 98008-3937
Phone: (425) 653-4286
Fax: (425) 747-1069
Email: [email protected]
www.fathersnetwork.org
F.E.A.T. (Families for Effective Autism
Treatment of Washington)
Information, resources, training and
services for research-based home
intervention programs.
14434 NE 8th St, 2nd Floor
Bellevue, WA 98007
Phone: (425) 223-5126
Email: [email protected]
www.featwa.org
Financial Aid for Students with
Disabilities (website)
Provides information about scholarships
and fellowships.
Email: questions@naid.org
http://www.naid.org/otheraid/disabled.
phtml
HUD of Washington State
Housing services and information.
Seattle Federal Ofce Building
909 First Avenue, Suite 200
Seattle, WA 98104-1000
Phone: (206) 220-5101
Toll-Free: (877) 741-3281
TTY: (206) 220-5254
Independent Living Institute (website)
International site providing information
re: living and studying in the US. Lists
Colleges in WA State.
www.independentliving.org/
studyworkabroad/US/universities_in_
Washington.html
Legacy Children’s Center
Comprehensive pediatric development
and rehabilitation center providing
assessment, coordination of services and
care.
2121 NE 139th St Bldg A, Suite 200
Vancouver, WA 98686
Phone: (360) 487-1777
Fax:(360) 487-1779
www.legacyhealth.org/body.
cfm?id=1272
Mary Bridge Children’s Hospital/ and
Health Center
Pediatric psychological services,
diagnosis, assessments, therapies, care
coordination
317 Martin Luther King Jr Way
Tacoma, WA 98405
Phone: (253) 403-1400
Fax: (253) 403-1235
www.multicare.org/mary-bridge-hospital
National Alliance on Mental Illness
(NAMI)
Provides advocacy, public education,
information/referral, and self-help
support groups for people with mental
illness and their families.
802 NW 70th Street
Seattle, WA 98117
Voice & TTY: (206) 783-9264
Fax:(206) 784-0957
Toll Free: (800) 782-4264
www.nami-greaterseattle.org
Northwest Autism Center (NAC)
Information, referral and support;
advocacy; education and training; early
intervention preschool for children with
autism spectrum disorders. Serves
Spokane and the Inland Northwest
25 W 5th Ave
Spokane, WA 99204
phone: (509) 328-1582
email: [email protected]
www.nwautism.org
Northwest Justice Project:
Coordinated Legal Education, Advice &
Referral (CLEAR)
Provides phone service for eligible low-
income people and seniors to obtain free
legal assistance with civil legal problems.
Toll Free: (888) 201-1014
http://www.nwjustice.org/
Ofce of the Education Ombudsman
Assists families and educators across the
state with conict resolution strategies.
Northgate Executive Center 1, Bldg B
155NE 100th St, Suite 210
Seattle, WA 98125-8012
Phone: (206) 748-5613
Fax: (206) 729-3251
Toll Free: (866) 197-1597
Email: OEOinfo@gov.wa.gov
www.governor.wa.gov/oeo/default.asp
Ofce of the Superintendent of Public
Instruction (OSPI)
Special Education Services for preschool
ages 3 to age 21
Old Capitol Building
600 Washington St SE
Olympia, WA 98504-7200
Phone: (360) 725-6000
TTY: (360) 664-3631
email: [email protected]
http://www.k12.wa.us/SpecialEd/
default.aspx
Parent Coalitions of Washington State
Provides information and resources
to families. To nd a Parent Coalition
in your area, log onto www.
washingtonparentcoalitions.org/default.
aspx
Parent to Parent of Washington State
Emotional support and information to
families of children with special needs
and/or disabilities. Also offer trainings
and educational events.
2638 State Ave NE
Olympia, WA 98506
Toll Free: (800) 821-5927
Email: [email protected]
www.arcwa.org/getsupport/
parent_to_parent_p2p_programs
PAVE of Washington State
Parent-directed, non-prot organization
providing information, training, support,
referral services & education advocacy.
6316 So. 12th Street
Tacoma, WA 98465
Phone: (253) 5-PARENT
Fax: (253) 566-8052
Toll Free: (800) 572-7368
Email: pave@wapave.org
www.washingtonpave.org
People First of Washington
Supports individuals with self-advocacy
information, training.
P.O. Box 648
Clarkston, Washington 99403
Phone: (800) 758-1123
E-mail: [email protected]m
www.peoplerstofwashington.org/
Professional Development in Autism
(PDA) Center
Provides training and consultation to
school teams who work with students
with ASD from diagnosis through 21.
University of Washington
Experimental Education Unit
Box 357925
Seattle, Washington 98195
Phone: (206) 221-4202
Email: [email protected]
http://depts.washington.edu/pdacent/
index.html
Providence-Sacred Heart Children’s
Hospital: Spokane
Evaluates and treats children with
developmental disorders like autism.
101 W Eighth Ave
Spokane, WA 99204
Phone: (509) 474-3131
Seattle Children’s Autism Center
Diagnosis, evaluation and long-term
management of autism.
4909 25th Ave NE
Seattle, WA 98106
Phone: (206) 987-8080
Fax: (206) 987-8081
www.seatlechildrens.org/
clinics-programs/autism-center
Seattle Children’s Neurodevelopmental
Programs
Evaluates and cares for children with
conditions related to the development of
the nervous system, including the brain.
4800 Sand Point Way NE
Seattle, WA 98105
Phone: (206) 987-8080
Fax: (206) 987-3284
Toll Free: (866) 987-2000
Autism Lifespan Resource Directory
Washington state-wide services and supports for children and adults with autism
spectrum disorders and their families
This insert is designed as a convenient public reference to accessible services and supports. Neither the Caring for
Washington Individuals With Autism Task Force nor the Department of Health assumes any legal liability or responsibility
for the accuracy, completeness, or usefulness of any information, product, or process disclosed within.
• Autism Lifespan Resource Tree: This information graphic is organized by need from birth to adulthood. Under
each category, statewide agencies, organizations or groups are listed with phone numbers for easy, quick access.
• Autism Lifespan Resource Directory: This section provides detailed contact information for each of the resources
on the tree. Entries are listed in alphabetical order.
Autism Guidebook for Washington State: A Resource for Individuals, Families and Professionals
7
www.seatlechildrens.org/clinics-programs/neurodevelopmental
Self Advocates in Leadership (SAIL)
Supports individuals with self-advocacy information and training throught the state of Washington.
Toll Free: (888) 754-8798
www.sailcoalition.org
SHIBA Helpline-Statewide Health Insurance Benets Advisors
Consumer counseling and information/referral regarding public and private health care options.
Ofce of the Insurance Commissioner PO Box 40255
Olympia, WA 98504-0256
Phone: (360) 725-7171
Toll Free: (800) 562-6900
TTY: (360) 586-0241
Social Security Ofce-Washington
Toll Free: (800) 772-1213
Toll Free TDD: (800) 325-0778
www.socialsecurity.gov/seattle
Sound Options Special Education Medication
Communication and conict resolution support and training to Washington residents and organizations.
PO Box 11457
Bainbridge Island, WA 98110-5457
Phone: (206) 842-2298
Toll Free: (800) 692-2540
www.soundoptionsgroup.com
STOMP-Specialized Training of Military Parents
National Parent Training and Information Center for military families providing support and advice to military parents
without regard to the type of medical condition their child has.
6316 So. 12th St
Tacoma, WA 98465
Fax: (253) 566-8052
Toll Free: 1-800-5-PARENT
TTY: (253) 565-2266
www.stompproject.org
University of Washington Autism Center
Diagnostic evaluations and multi-disciplinary intervention services for children with autism spectrum disorders from infancy
through adolescence.
Seattle Clinic:
CHDD 1701 Columbia Road, Box 357920
Seattle, WA 98195-7920
Phone: (206) 221-6806
Tacoma Clinic:
Cherry Parkes Bldg
1900 Commerce Street, Box 358455
Tacoma, WA 98402-8455
Phone: (253) 692-4721
http://depts.washington.edu/uwautism
University of Washington Haring Center
Serves individuals from infancy through adulthood who have neurodevelopmental differences (including autism spectrum,
ADHD, learning disabilities and developmental delays) and their families.
1959 NE Pacic St
Seattle, WA 98195
Phone: (206) 543-4011
University of Washington Center on Human Development and Disability
Provides diagnosis, assessment and management plans for children form early childhood to adolescence with or at risk for
neurodevelopmental disabilities.
PO Box 357920
Seattle, WA 98195
Phone: (206) 598-9346
Email: gag@uw.edu
www.depts.washington.edu/chdd/ucedd/ctu_5/child_devclinic_5.html
www.basichealth.hca.wa.gov/
Washington Access Fund
8 1
1. User Guide
Purpose and Source
These guidelines offer basic concepts in providing supports for individuals
with Autism Spectrum Disorders (ASDs). The information and recommended
strategies and modications were compiled by committees and agreed upon
by the Caring for Individuals with Autism in Washington Task Force, referred
to as the Autism Task Force (ATF).
Introduction
The ATF recognizes that nding and maneuvering through the various
systems in Washington State is sometimes tedious and frustrating.
Throughout the document there are multiple references to various federal
laws and state agencies. A summary of pertinent federal laws and the state
agencies affected by and involved with the laws can be found in the rst few
documents of the appendix section.
The guidelines are intended to serve as an informational tool to assist in
the navigation of available treatments and services, and to understand
the language and issues currently relating to ASD. They can be viewed as
a map to the development of independence for the individual with ASD at
the highest level possible in all life areas. The guidelines are not a required
standard of practice for the education of these individuals in Washington
State.
These guidelines are intended to provide recommendations based on current
knowledge about how to assess the needs of individuals and obtain or
deliver appropriate services and supports to children and adults with autism
spectrum disorder. They are intended to help individuals with the disorder
move from one developmental level to another and gain momentum in the
process. These guidelines have a primary focus on individuals, from infancy
throughout the lifespan. The basis for all the guidelines is to acknowledge a
continuing process of change and growth.
Several decades ago, if a child was diagnosed with autism, there was little
hope for leading anything close to a “normal” life. In fact, many parents
were encouraged by professionals at the time to place their children
with autism into institutional care to spare the families the stress and
heartache of attempting to raise the children. However, recent research
has demonstrated that by providing appropriate services and supports at
appropriate developmental levels, signicant gains in most life areas can be
achieved and the person with ASD can thrive.
Provides affordable credit and learning opportunities for assistive technology and small businesses to individuals with
disabilites.
100 S Kings St, Suite 280
Phone: (206) 328-5116
Fax: (206) 328-5126
Toll Free: (877) 428-5116
TTY: (888) 494-5126
Email: [email protected]
www.washingtonaccessfund.org
Washington Assistive Technology Alliance Program (WATAP)
Provides Assistive Technology resources and expertise to all Washingtonians with disabilites to aid in making decisions and
obtaining the technology and related services needed for employment, education and independent living.
University of Washington
Box 357920
Seattle, WA 98195-7920
Fax: (206) 543-4779
Toll Free: (800) 214-8731
TTY: (866) 866-0162
Email: watap@uw.edu
www.watap.org
Washington Health Care Authority
Reduced-cost health care coverage to qualied Washington State residents.
626 8th Ave SE
Olympia, WA 98501
Toll Free: *800) 562-3022
www.hca.wa.gov/Pages/index.aspx
WISE: Washington Initiative for Supported Employment
Educational and consulting services, training and technical assistance, accessible electronic and information technology and
other disability related civil rights laws.
100 S. King St., Suite 260
Seattle, WA 98104
Phone: (206) 343-0881
www.gowise.org
Washington State Client Assistance Program
Assists with questions about vocational rehabilitation services.
2531 Rainier Ave S
Seattle,WA 98144
Toll Free: (800) 544-2121
TTY: (888) 721-6072
Email: jcap@questofce.net
www.washingtoncap.org
Washington Medical Home
Helps individuals and families to partner with health care providers, understand health conditions, and make informed
health care decisions.
Box 357920
Seattle, WA 98195-7290
Phone: (206) 685-1279
Email: [email protected]
www.medicalhome.org/
WithinReach
Connect families to food and health resources
155 NE 100th St #500
Seattle, WA 98125
Phone: (206) 270-8891
Fax: (206) 270-8891
Family Health Hotline: 1-800-322-2588
Email: [email protected]
www.parenthelp123.org
www.withinreachwa.org
2 3
Also, due to a shift to the “spectrum” view of ASD, we are better able to
identify and assist those individuals who have less severe forms of the
disorder. These individuals were most often left undiagnosed in the past
and did not receive many appropriate services or supports even though we
now know they could have beneted from them. Improvements in diagnosis
is essential for optimizing potential outcomes in ongoing treatment and
intervention for individuals with autism. This shift will require changes in
attitudes, policies, and the allocation of resources to address the needs of
every person with ASD in a fair and appropriate manner.
How to Use This Document
Description
The sections in this document cover a variety of information on autism:
Denition.
Medical Aspects.
Components of Learning.
Components of Instruction and Resources.
Community Transitions.
Future Life Planning.
Autism Awareness.
Training in the Community.
Advocacy.
We recommend that the user of this document not look at the sections in
isolation. Given the complex nature of ASD, delivery of educational supports
often requires consideration of many aspects of the person simultaneously.
Cross-referencing is provided to assist the reader with making a more
comprehensive understanding of each of the topics. Having the reader
familiar with all contents of this document is ideal.
There is a wealth of knowledge and information included in the supplemental
pieces of the Appendix. Included is information on federal disability laws,
the Washington State agency appointed to carry out the law, and the
Washington Administrative Code (law) that applies. These incorporate Child
Find Information, Washington’s System of Services Birth to Three, and
Special Education three through 21. The ATF recommends reading carefully
through Appendices 1, 2, and 3 to discover how the laws might apply to
individual situations and which agency has been appointed responsible for
services under state and federal law.
There are other appendices on educational components, several to do with
Educational Components, Medical Aspects, Frequently Used Terminology,
References for all the citations, and a Getting Connected section with
internet addresses and some phone numbers. All the information is provided
to give the reader background and more insight on issues.
This document should be a part of your regular planning and training
process. It should be used in tandem with continuous in-service training for
families, educators, medical professionals, care providers and other service
providers.
Practitioners and families are encouraged to use the information provided
in these guidelines recognizing that the services should always be tailored
to the individual. Not all of the recommendations will apply in every
circumstance.
Recommended Process
When using this document to address a particular need, identify in
the Table of Contents the section that most closely relates to the
topic. Read the entire section and any referenced sections.
Work with a team to develop a plan, whether it be education,
health care, or social services. When related issues arise in the
planning process, review those topics and referenced sections.
Periodically review the progress, implementation, and plan. The
guidelines include recommendations for assessment, and can be
used to generate next steps.
Rene the plan and its implementation on a regular basis,
returning to the Guidelines for further information and
recommendations.
What this Document is NOT
These guidelines are not a required standard of education for individuals
with ASD in Washington. They are not intended to support any specic
intervention, treatment program, methodology or medication.
4 5
2. Introduction to Autism
There are several different denitions of autism as the denitions serve
different purposes. The introduction gives a broad general description and a
global “picture” about the subject of autism. It gives a lot of information and
the knowledge is easily understood.
Treatment strategies for ASD include both medical treatment and educational
interventions. The medical denition is required for a “diagnosis” of autism
and must be made by a psychologist, psychiatrist, or a physician using
criteria from the Diagnostic and Statistical Manual of Mental Disorders, DSM-
IV. (See Chapter 4 Medical Aspects). The diagnosis then helps the individual
to obtain needed treatments, medications, or therapies.
A medical diagnosis is not required for an education identication of
ASD, nor does it automatically guarantee identication. Both denitions
identify the difculties experienced by individuals with ASD in the areas of
communication, socialization, and behavior. The educational denition was
designed to identify children eligible for special education services under
the federal Individuals with Disabilities Education Act (IDEA) rst enacted in
1991. Additionally, there is a Washington State law (WAC) describing autism.
It is used to determine eligibility for special education services in our state
(see Appendix 3, Special Education).
What is Autism or Autism Spectrum Disorder?
Autism is a complex neurodevelopmental disorder occurring in 1 out of
150 individuals with more frequent occurrence in boys than girls (Centers
for Disease Control and Prevention [CDC] 2007). Classied as one of the
ve Pervasive Developmental Disorders (Diagnostic and Statistical Manual
of Mental Disorders, IV, TR, 2000), autism is a neurological disorder
that impacts brain development in social interaction, communication
and repetitive behaviors. The onset of symptoms is generally within the
rst three years of life, although the presentation varies widely among
individuals.
The pervasive developmental disorders encompass behavioral impairments
across three domains of development:
Qualitative impairments in social interaction.
Qualitative impairments in communication.
Restricted, repetitive and stereotyped patterns of behavior,
interest and activities (Centers for Disease Control and Prevention,
2007).
6 7
There are a number of other common ndings in individuals with
autism that are not part of the diagnostic criteria. These may
include unusual responses to sensory stimulation, behavioral
disturbances and signicant strengths and weaknesses in
cognitive characteristics. The denition of autism has broadened
so that autism is now seen as a spectrum disorder. In recent
years, the conceptualization and criteria dening the condition
called “autism” have evolved. For these guidelines, the panel
agreed to use the terminology of “Autism Spectrum Disorder”
(ASD) which would include the disorders commonly diagnosed
as Autism, Asperger Disorder, and Pervasive Developmental
Disorder - Not Otherwise Specied (PDD-NOS). The majority
of specialists believe that the boundaries along the continuum
overlap to a large degree.
Autism is more common than previously realized, in part due
to the broader denition and inclusion of higher functioning
autism in recent years. Earlier studies suggested that about
three to four individuals in 10,000 were affected by autism
(Fombonne, 2003). Researchers observed an increase in the rate
of individuals diagnosed with ASD in the past decade. The most
recent estimate from the CDC is one out of every 150 children in
the communities studied has an ASD (2007).
In addition to inclusion of high functioning autism, the increase
in the number of people with autism spectrum disorders
may also be a result of improved diagnosis. However, other
possibilities are being considered including environmental and
genetic factors.
3. Dening Autism
Pervasive Developmental Disorders
Autism is one of ve disorders that falls under the umbrella of Pervasive
Developmental Disorders (PDD), a category of neurological disorders
characterized by “severe and pervasive impairment in several areas of
development” (Autism Society of America, 2008)
Autism is
a complex
neurobiological disorder that typically lasts throughout a person’s lifetime.
It is part of a group of disorders known as autism spectrum disorders
(ASD). Today, 1 in 150 individuals is diagnosed with autism, making it more
common than pediatric cancer, diabetes, and AIDS combined. It occurs in
all racial, ethnic, and social groups and is four times more likely to strike
boys than girls. Autism impairs a person’s ability to communicate and relate
to others. It is also associated with rigid routines and repetitive behaviors,
such as obsessively arranging objects or following very specic routines.
Symptoms can range from very mild to quite severe. All of these disorders
are characterized by varying degrees of impairment in communication skills
and social abilities, and also by repetitive behaviors (Autism Speaks, 2008).
Categories and Diagnostic Criterias
Pervasive Developmental Disorders are a group of conditions with
common impairment in the domains of socialization and communication.
These include Autism, Asperger Syndrome, Rett’s Syndrome, Childhood
Disintegrative Disorder and Pervasive Developmental Disorder-Not Otherwise
Specied. Autism, Asperger Syndrome and PDD-NOS fall under Autism
Spectrum Disorder (ASD).
8 9
Autistic Disorder is the classic form of ASD with a prevalence of about
11:10,000 and a male/female ratio of 3-4:1. Diagnosis is optimally made
between age sixteen months to three years, with some children showing
features in the rst year of life. Individuals with this diagnosis have
dysfunction in three core domains.
Qualitative Impairment in Socialization
Socialization abilities are most severely affected in the early preschool
years with the child either socially unavailable or a social loner. Social
skills improve over time, but still show variable dysfunction ranging from
remaining a social loner to acquiring social skills that are stilted and
pedantic.
Qualitative Impairment in Communication
Impairment in communication ranges from absence of an apparent desire
to communicate to excessive speech with poor interactive conversation.
All individuals have impairment in pragmatic abilities, such as poor eye
contact, voice modulation, and use and understanding of gestures and
other nonverbal body/facial expressions.
They are literal in interpretation of others’ comments and actions and have
difculties with insight into others’ actions and perspectives. Echolalia
is the immediate and involuntary repetition of words or phrases spoken
by others. It is usually present in a transient or permanent manner. Play
usually shows a decit in imagination and symbolic features, although
some children will develop a restricted pretend play.
Restricted Interests and Repetitive, Stereotypic Behaviors
All individuals with autism have restricted activities and interests that can
range from repetitive motor actions such as opening and closing doors to
nger icking, spinning and lining objects to fascinations in mechanical
and cognitive themes. Resistance to change in routine is commonly seen
in the preschool years and may persist to adulthood.
Other members of the PDD category
Asperger Syndrome typically becomes apparent in the pre-
school years with challenges in socialization, interpreting social
cues and naive/unusual behavior. Language, while within age
expectatons in achievement of developmental milestones, has
associated problems in abstraction, interpretation and pragmatics.
Areas of fascination are usually paramount. By denition,
individuals with Asperger Disorder have cognitive and adaptive
skills within the average range. Many individuals with Aspergers
struggle with executive functioning challenges and co-occuring
mental health issues.
Pervasive Developmental Disorder - Not Otherwise
Specied (PDD-NOS) is applied to children who have some, but
not all, of the features of autistic disorder (either quantitatively
or qualitatively). All individuals have impairment in socialization
with either impairment in communication or restricted activities/
interests. This category is not as well dened as the others
and may inadvertently be applied to children with socialization
difculties due to other conditions.
Childhood Disintegrative Disorder has behavioral features
similar to autistic disorder with onset between ages two to ten
years after an apparently normal early childhood. It is sometimes
associated with specic medical disorders and has a worse
prognosis for signicant improvement.
Rett’s Syndrome occurs after an apparently normal early infancy
with a stagnation and loss of developmental skills between ages
ve to thirty months. This is associated with a deceleration
of head growth, loss of purposeful hand use and replacement
with stereotypic hand movements such as hand wringing and
mouthing, gradual appearance of gait unsteadiness, and severe
impairment in expressive and receptive language and in cognitive
abilities. This disorder is primarily limited to girls, who may
transiently show impairment with socialization during its evolution.
Most develop seizures. Rett Syndrome is caused by an abnormality
in the MECP2 gene on the X chromosome.
Autism spectrum disorders and developmental disabilities are complex by
nature and cross all learning and lifespan of an individual, in school and at
home. While ASD is not curable, it is treatable and this includes both medical
and educational interventions.
Autism is one of the disabilities specically dened in the fedral Individuals
with Disabilities Education Act (IDEA, 2004) and the Washington
Administrative Code (WAC) 392-172A-01035 (2007).
The Individuals With Disabilities Education Act (IDEA)
Federal Regulation-34 CFR 300.7 (c)(1) (2004).
I. Autism is a developmental disability signicantly affecting verbal and non-
verbal communication and social interactions, generally evident before
age three, that adversely affects a child’s educational performance. Other
characteristics often associated with autism are engagement in repetitive
10 11
activities and stereotyped movements, resistance to environmental
change or change in routine, and unusual responses to sensory
experiences. The term does not apply if a child’s educational performance
is adversely affected primarily because the child has a serious emotional
disturbance, as dened in paragraph (b) (9) of Federal Regulation 34 CFR
300.7
II. A child who manifests the characteristics of “autism” after age three could
be diagnosed as having “autism” if the criteria in paragraph (I) of this
section are satised.
Washington State
WAC 392-172A-01035 Child with a disability or student eligible for
special education.
(1)(a) Child with a disability or as used in this chapter, a student
eligible for special education means a student who has been evaluated and
determined to need special education because of having a disability in one of
the following eligibility categories: Mental retardation, a hearing impairment
(including deafness), a speech or language impairment, a visual impairment
(including blindness), an emotional behavioral disability, an orthopedic
impairment, autism, traumatic brain injury, an other health impairment,
a specic learning disability, deaf-blindness, multiple disabilities, or for
students, three through eight, a developmental delay and who, because of
the disability and adverse educational impact, has unique needs that cannot
be addressed exclusively through education in general education classes
with or without individual accommodations, and needs special education and
related services.
(c) If it is determined, through an appropriate evaluation, that a student
has one of the disabilities identied in subsection (1)(a) of this section, but
only needs a related service and not special education, the student is not a
student eligible for special education under this chapter. School districts and
other public agencies must be aware that they have obligations under other
federal and state civil rights laws and rules, including 29 U.S.C. 764, RCW
49.60.030, and 43 U.S.C. 12101 that apply to students who have a disability
regardless of the student’s eligibility for special education and related
services.
(d) Speech and language pathology, audiology, physical therapy, and
occupational therapy services, may be provided as specially designed
instruction, if the student requires those therapies as specially designed
instruction, and meets the eligibility requirements which include a disability,
adverse educational impact and need for specially designed instruction. They
are provided as a related service under WAC 392-172A-01155 when the
service is required to allow the student to benet from specially designed
instruction.
(2) The terms used in subsection (1)(a) of this section are dened as
follows:
(a)(i) Autism means a developmental disability signicantly affecting
verbal and nonverbal communication and social interaction, generally
evident before age three, that adversely affects a student’s educational
performance. Other characteristics often associated with autism are
engagement in repetitive activities and stereotyped movements, resistance
to environmental change or change in daily routines, and unusual responses
to sensory experiences.
(ii) Autism does not apply if a student’s educational performance
is adversely affected primarily because the student has an emotional
behavioral disability, as dened in subsection (2)(e) of this section.
(iii) A student who manifests the characteristics of autism after age three
could be identied as having autism if the criteria in (a)(i) of this subsection
are satised. (Statutory Authority: RCW 28A.155.090(7) and 42 U.S.C. 1400
et. seq. 07-14-078, § 392-172A-01035, led 6/29/07, effective 7/30/07,
accessed May 20, 2008. http://search.leg.wa.gov/pub/textsearch/ViewRoot.
asp?Action=Html&Item=0&X=521065108&p=1
The Ofce of Superintendent of Public Instruction’s (OSPI) special education
manual The Educational Aspects of Autism Spectrum Disorders (2003) is
scheduled for update with further information on special education and
pertaining laws in Washington State fall of 2008.
Diagnostic and Statistical Manual of Mental Disorders IV
TR
Diagnostic Criteria for 299.00 Autistic Disorder
(I) A total of six (or more) items from (A), (B), and (C), with at least two
from (A), and one each from (B) and (C)
(A) qualitative impairment in social interaction, as manifested by at least two
of the following:
1. marked impairments in the use of multiple nonverbal behaviors such as
eye-to-eye gaze, facial expression, body posture, and gestures to regulate
social interaction
2. failure to develop peer relationships appropriate to developmental level
12 13
3. a lack of spontaneous seeking to share enjoyment, interests, or
achievements with other people, (e.g., by a lack of showing, bringing, or
pointing out objects of interest to other people)
4. lack of social or emotional reciprocity (note: in the description, it gives the
following as examples: not actively participating in simple social play or
games, preferring solitary activities, or involving others in activities only
as tools or “mechanical” aids )
(B) qualitative impairments in communication as manifested by at least one
of the following:
1. delay in, or total lack of, the development of spoken language (not
accompanied by an attempt to compensate through alternative modes of
communication such as gesture or mime)
2. in individuals with adequate speech, marked impairment in the ability to
initiate or sustain a conversation with others
3. stereotyped and repetitive use of language or idiosyncratic language
4. lack of varied, spontaneous make-believe play or social imitative play
appropriate to developmental level
(C) restricted repetitive and stereotyped patterns of behavior, interests and
activities, as manifested by at least two of the following:
1. encompassing preoccupation with one or more stereotyped and restricted
patterns of interest that is abnormal either in intensity or focus
2. apparently inexible adherence to specic, nonfunctional routines or
rituals
3. stereotyped and repetitive motor mannerisms (e.g hand or nger apping
or twisting, or complex whole-body movements)
4. persistent preoccupation with parts of objects
(II) Delays or abnormal functioning in at least one of the following areas,
with onset prior to age 3 years:
(A) social interaction
(B) language as used in social communication
(C) symbolic or imaginative play
(III) The disturbance is not better accounted for by Rett’s Disorder or
Childhood Disintegrative Disorder
14 15
4. Medical Aspects
This section describes issues related to diagnosis and medical concerns for
individuals with Autism Spectrum Disorder (ASD). It includes guidelines for
medical assessment and intervention in a wide range of medically related
areas. Many of the areas involve daily living skills such as feeding, sleeping,
and dental care. Others are psychosocial in nature, and include anxiety, tics,
and mood disorder. This section is best used in conjunction with the rest
of the document because medical interventions alone are not sufcient to
improve behavior or maximize learning (National Institute of Mental Health,
2007). It is, however, important to address potential medical problems
because they can signicantly impact development of social, cognitive and
academic skills (American Academy of Pediatrics, 2007).
Screening and Diagnosis
There is no blood test to determine if a child has an autism spectrum
disorder. The diagnosis is referred to as a descriptive diagnosis, meaning the
diagnosis is based on observation of the child’s behavior. The American
Academy of Pediatrics (AAP, 2007), the American Academy of Neurology
(2003), and the Child Neurology Society recommend developmental
screening for young children at all well-child check-ups with an autism
specic screen at 18 months of age. Due to
potential regression, an additional autism screen is
recommended at 24-30 months of age.
Screening tools may include the Modied Checklist
for Autism in Toddlers (M-CHAT) and are available
at www.aap.org (see Appendix 11, American
Academy of Pediatrics). People with ASD can have
two or more separate diagnoses, including mental
health, medical conditions or other developmental
disabilities. This is referred to as dual diagnosis,
comorbidity, or co-existing conditions.
Ideally, care for the individual would take place
in one setting. Within the school-age population,
children who are exhibiting a concerning combination of language, social
and behavioral difculties should be referred for a more detailed evaluation.
At risk children include those with social-practical language difculties,
restricted and or intense interests, and signicant challenges in social
initiation and or both.
The evaluation of all children for a possible ASD diagnosis should include
consultation with a medical professional experienced with the autism
Medical Key Points:
Early identication as
part of well-child care
visits
Implementation of
testing for identiable
etiologies
Monitoring for
comorbid conditions
Knowledge of
pharmacologic and
complementary
medicine options
16 17
spectrum. These professionals include child neurologists, child and
adolescent psychiatrists, and developmental and behavioral pediatricians,
as well as general pediatric specialists with expertise in ASD. A complete
history and physical examination should be performed, with emphasis
on neurodevelopmental and general medical history, family history of
individuals with similar difculties or known medical history of neurological
or developmental conditions, relevant documentation from previous
evaluations, and physical or behavioral ndings suggestive of specic
genetic, metabolic, neurological or other medical conditions.
Since some medical disorders are associated with or appear similar to
ASD, the medical evaluation is needed before any denitive diagnostic
statement regarding ASD is made. Medical tests can be helpful in dening an
underlying etiology (study of causes) for ASD, or indicating the most helpful
treatment. An identiable cause is present in only a small percentage of this
population. According to the American Academy of Neurology and the Child
Neurology Society (2006), there are other appropriate screening tests the
doctor may order when autism is suspected (see Appendix 12 for complete
clinician guidelines).
These include:
1. Genetic tests, specically high resolution chromosome analysis studies
(karyotype) and DNA analysis for Fragile X, because some causes
of autism may be inherited—or genetic. Genetic testing can provide
information about any specic inherited problems, genetic defects, or
nervous system abnormalities the child may have.
Fragile X is caused by an inherited change in a specic gene. A few
autistic children test positive for Fragile X. The doctor should order the
test if there is a family history of developmental problems, neurological
conditions or if the child has certain physical signs.
2. A relatively new technology called array comparative genome
hybridization, or CGH, has dramatically increased the number of certain
types of identied chromosomal abnormalities (especially micro-deletions
and micro-duplications) not identied using the high-resolution karyotype.
While not yet standard, it is reasonable to consider a CGH in children with
ASD, particularly if karyotype and Fragile X testing are unremarkable/not
conclusive.
3. Electroencephalography (EEG) is indicated only in some individuals,
such as those with a history of autistic regression (normal developmental
progress with loss of functional language and or social skills) and in those
with the clinical suspicion for seizures, among other indications. The EEG
study should be done in the awake and sleep state, recording at least
one complete sleep cycle. Because some medications used for sedation
for sleep can transiently suppress epileptiform activity, sleep should be
recorded with natural onset (such as naptime or overnight sleep) or with
medication that does not affect epilepsy activity. There are some data
to suggest that some aspects of ASD improve if a co-occurring seizure
disorder is diagnosed and adequately treated.
4. Other selective metabolic tests may be ordered to see if there is a
genetic or non-genetic condition that affects the child. A doctor might
order metabolic tests if there are other specic symptoms such as
lethargy or cyclic vomiting.
5. Laboratory investigations include formal hearing (audiological)
evaluation for children with developmental delay or autism.
6. Screening for vision issues.
7. Skin Wood’s lamp assessment should be performed to assess for a
skin-brain (neurocutaneous) disorder, such as tuberous sclerosis.
8. Lead screening may be ordered if there is a risk that the child might
have lead poisoning or in the case of developmental delay. Since some
children with autism tend to eat non-food items and lead may be found in
paint chips, the doctor may order a blood test for lead screening.
9. Evaluation of Gastrointestinal (GI) Dysfunction. Despite second-
hand reports, no causal relationship has been established between
gastrointestinal dysfunction and ASD. Since individuals with ASD can
have GI dysfunction of diverse etiology, such as gastroesophageal reux,
chronic constipation, and disaccharidase deciency, the evaluation should
be based on the clinical presentation and not necessarily on the diagnosis
of ASD.
10. Brain imaging, such as MRI, rarely shows any signicant abnormality
in individuals with ASD unless there is a co-existing condition for which
imaging is indicated, such as non-familial microcephaly or macrocephaly,
regression, seizures or focal neurologic features.
11. Other tests should be ordered as clinically indicated and not because
of the diagnosis of ASD. Children with developmental or cognitive
impairment and ASD may be candidates for testing for inborn errors of
metabolism, including amino and organic acid assays. Other studies such
as allergy testing, immune system workup and heavy metal assays should
be done only if there are clinical features of these types of disorders.
18 19
12 Psychological tests and speech and language tests are likely to be
ordered to help plan for a child’s education (Neurology 2000 and National
Guidelines Clearinghouse, 2006).
For more information, a parent fact sheet on screening and diagnosing of
children with autism and follow up test information is available online from
the American Academy of Neurology and Child Neurology Society (2008)
at http://aan.com/professionals/practice/guidelines/guideline_summaries/
Autism_Guideline_for_Clinicians.pdf.
For general practice providers and pediatricians, see the AAP guidelines in
the appendix or online at professional resources http://www.healthychildren.
org/English/health-issues/conditions/developmental-disabilities/Pages/
Autism-Spectrum-Disorders.aspx. Additional AAP materials are detailed
(page 24) under the AAP toolkit.
School Age Diagnosis
Similar to the preschool age child, the diagnostic assessment of a school-
age child should occur through a multidisciplinary approach including
assessment of cognitive, language, motor and social skills. In addition to a
medical evaluation, school-age children should undergo formal psychological
assessment by a child psychologist experienced in evaluating children
with ASD. As a component for this assessment, the use of well-recognized
diagnostic tools is imperative because of the presence of less obvious
symptoms in this age group.
Evaluation by a speech and language pathologist
with expertise in assessing children with ASD is
useful, even in a child with apparently normal
speech, in part to examine social and practical
skills.
The school has a role in the diagnostic
assessment of a school-age child for possible
ASD. In addition to being a source of referral for diagnostic evaluation,
school personnel can assist by providing accounts of behavioral observations
and academic and psychological testing information. For some children,
a school visit by a member of the diagnostic team may be valuable.
The diagnostic assessment of a school age child should occur through a
multidisciplinary approach.
The family is an essential member of the diagnostic team. Family members
contribute by providing important historical information. They can optimize
their roles by becoming familiar with the features of ASD and helping the
The diagnostic
assessment of
a school-age
child should
occur through a
multi-disciplinary
approach.
diagnostic team recognize the features that may or may not be present in
the child.
Diagnostic and Screening Instruments
The following instruments are used to diagnose or assess the clinical course
of children with ASD. They measure function and dysfunction across the
various areas of ASD. Please note that those using these instruments
for screening and diagnostics should have a good knowledge of ASD and
training in the use of the different instruments. This is by no means meant
to be a complete listing of tools as research continually evolves to develop
more effective diagnostic instruments.
Diagnostic Tools
Asperger Syndrome Diagnostic Scale (ASDS)
The ASDS is a quick, easy-to-use rating scale that can help determine
whether a child is at-risk for Asperger Disorder. Anyone who knows the
child or youth well can complete this scale. Parents, teachers, siblings,
paraeducators, speech and language pathologists, psychologists,
psychiatrists, and other professionals can answer the 50 yes or no items in
10 to 15 minutes. Designed to identify Asperger Disorder in children ages
ve through eighteen years, this instrument provides an AS Quotient that
tells the likelihood that an individual has Asperger Disorder (Myles, Beck,
Simpson, 2001).
Other screening instruments for Aspergers may include the Social
Communication Questionnaire, Social Responsiveness Scale, Asperger
Syndrome School Questionnaire and the Children’s Communication Checklist.
Autism Diagnostic Interview—Revised (ADI-R)
The ADI-R is a standardized semi-structured investigator-based interview of
individuals with ASD. It can be used for children with mental age at or above
eighteen months. There is good supporting research to conrm its reliability
and validity. The short form of the ADI-R takes approximately one hour to
complete. The long form is more lengthy and is primarily used in research
studies (Lord, Rutter, Le Couteur, 1994).
Autism Diagnostic Observation Scale (ADOS)
The ADOS is a structured observation schedule for the diagnosis of ASD. It
focuses on qualitative features of socialization and communication and has
an interactive component. Several versions are available, including one for
children who are not yet using phrased speech. Since it is used in a highly
structured environment, it may not reect the more subtle features of ASD.
20 21
Therefore, observations in non-structured settings and parent interview may
be necessary (Lord et. al., 2000).
Gilliam Autism Rating Scale (GARS)
The GARS is based on the DSM-IV denitions of ASD and has four sub-
tests (stereotyped behaviors, communication, social interactions, and
developmental disturbances). This rating scale has good reliability and
validity when used for the identication and diagnosis of individuals at
or above age three. This scale can be easily and quickly completed by
individuals who best know the child (Gilliam, 1995).
Screening Tools
Autism Behavior Checklist (ABC)
The ABC is a 57-item checklist that can be used as a screening instrument.
It is used to estimate the severity of autistic features in an individual and
to follow these features over time. It is not as reliable as the ADI-R (Krug,
Arick, Almond, 1980).
Modied Checklist for Autism in Toddlers (M-CHAT)
The M-CHAT is an expanded American version of the original CHAT from the
U.K. The M-CHAT has 23 questions using the original nine from the CHAT
as its basis. Its goal is to improve the sensitivity of the CHAT and position it
better for an American audience (Robins, Fein, Barton, Green, 2001).
Screening Tool for Autism in Toddlers and Young Children (STAT)
The STAT is an evidence-based, interactive screening tool for autism in
children between two and three years of age. It is designed to identify
children at risk for diagnosis of autism at an early age. It is administered
by a community service professinal and has activities that assess important
social and communicative behaviors including imitation, play, requesting
and directing attention. The STAT takes about 20 minutes to administer.
Because the STAT involves play-based activities that focus on core decit
areas in autism, teaching goals and activities can be developed based on
observations during the screening.
Functional Assessments
Autism Screening Instrument of Educational Planning (ASIEP-2)
The ASIEP-2 rates individuals at or above eighteen months of age in ve
areas (sensory, relating, body concept, language, and social self-help.) It is
used for evaluations and monitoring of individuals with ASD features (Krug,
Arick, Almond, 1993).
Psychoeducational Prole—Revised (PEP-R)
The PEP-R offers a developmental approach to the assessment of children
with autism or related developmental disorders. It is an inventory of
behaviors and skills designed to identify uneven and idiosyncratic learning
patterns. The test is most appropriately used with children functioning at
or below the preschool range and within the chronological age range of six
months to seven years. The PEP-R provides information on developmental
functioning in imitation, perception, ne motor, gross motor, eye-hand
integration, cognitive performance, and cognitive verbal areas. The PEP-R
also identies degrees of behavioral abnormality in relating and affect
(cooperation and human interest), play and interest in materials, sensory
responses, and language (Schopler, Reichler, Bashford, Lansing, Marcus,
1990).
Adolescent and Adult Psychoeducational Prole (AAPEP)
The AAPEP extends the PEP-R (see description above) to meet the needs of
adolescents and adults. (Mesibov, Schopler, 1988).
Real Life Rating Scale
The Real Life Rating Scale (RLRS) assesses function of 47 behaviors. It can
be used to monitor the effects of treatment in multiple environments and
can be repeatedly used without affecting intra-observer reliability (Ritvo,
Freeman, Yokota, Ritvo. 1986).
Promotional Training Programs
Several initiatives concerned with autism awareness for health care
providers, parents, and early learning educators are available now and
being promoted. These education programs will increase the concept of
early identication by health care providers and early learning specialists.
Additionally, the materials teach parents how to recognize developmental
issues and advocate on behalf of their children in the process of searching
for a diagnosis.
First Signs Program
The First Signs educational and training program incorporates an integrated
mix of mailings, public service announcements, press activities, training,
research, and website materials at www.rstsigns.org. These provide
essential developmental information, an explanation of the screening
process, a systematic guide to each stage of the process, listings of available
local and national resources, and links to research, books, articles and
programs nationwide.
22 23
The program features the First Signs Screening Kit, which includes an
educational video (“On the Spectrum: Children and Autism”), screening
guidelines based on the practice parameter and endorsed by the AAP, highly
validated developmental and autism screening tools, a pediatric practitioner’s
referral guide to Early Intervention, and a developmental milestones wall
chart.
Currently, First Signs uses the M-CHAT in screening for autism. The following
general developmental screening tools are among those used in the First
Signs program, although new tools, both for general development and
autism, continue to be evaluated.
Parents Evaluation of Developmental Status (PEDS) is
a parent questionnaire which is 70 to 80 percent accurate in
identifying children with disabilities from birth through eight
years. It can be administered by a wide range of health care
professionals or ofce staff (Glascoe, Robertshaw, 2000).
Ages and Stages Questionnaire (ASQ), developed by Diane
Bricker, Ph.D., and Jane Squires, Ph.D., identies children ranging
in age four months through ve years experiencing developmental
delays. It is a series of questionnaires that works well when used
to stimulate conversations with parents or caregivers about a
child’s development and any concerns they may have (1999).
Communication and Symbolic Behavior Scales
Developmental Prole Infant-Toddler Checklist (CSBS
DP), developed by Amy M. Wetherby, Ph.D., CCC-SLP, and Barry
M. Prizant, Ph.D., CCC-SLP has 24 multiple choice questions
to be completed by a parent or caregiver. It is used to identify
developmental delays in children ranging from age six through
twenty four months (2001).
Learn the Signs. Act Early.
The Centers for Disease Control and Prevention (CDC) under the federal
agency of the Department of Health and Human Services collaborated with
many partners to develop a promotional campaign to increase national
autism awareness and benet children. The campaign, called “Learn the
Signs. Act Early: It’s time to change how we view a child’s growth” targets
health care providers, parents, and early educators. The partners coming
together in this effort include the American Academy of Pediatrics, the
Autism Society of America, Autism Speaks, First Signs, the Organization for
Autism Research, the CDC, and many community champions.
The following are objectives of the campaign:
Increase awareness of developmental milestones and early
warning signs.
Increase knowledge in the benets of early action and early
intervention.
Increase parent-provider dialogue on the topic of developmental
milestones and disorders.
Increase early action on childhood developmental disorders.
The promotional materials consist of distinct resource kits for health care
professionals, parents, and early educators. The supplies include posters,
fact sheets, informational cards, CD-ROMs, yers, and growth charts. The
resources are free and downloadable from the website or can be obtained
through the mail or by phone. More information can be found at the CDC
website http://www.cdc.gov/ncbddd/autism/actearly/
American Academy of Pediatrics (AAP) Toolkit
This toolkit was developed to support health care professionals in the
identication and ongoing management of children with ASD in the medical
home. The AAP released its pediatric toolkit with an extensive array of
resources for caring for children with autism. The information can be
accessed on the web or through a CD-ROM, “Autism--Caring for Children
with Autism Spectrum Disorders: A Resource Toolkit for Clinicians.”
A multifaceted clinical resource, the toolkit has the following practice tools
and resources: (1) identication, (2) referrals, (3) physician fact sheets,
and (4) family handouts. To view a detailed product prole with sample
tools and resources, go to: http://www.aap.org/en-us/advocacy-and-policy/
aap-health-initiatives/Pages/Caring-for-Children-with-Autism-Spectrum-
Disorders-A-Resource-Toolkit-for-Clinicians.aspx
Medical Intervention for Individuals with ASD
Autistic Spectrum Disorders (ASDs) are now recognized as neurobiologically
based conditions. ASDs, similar to other neurodevelopmental disabilities, are
generally not “curable,” and individuals with ASD
require ongoing medical monitoring and care, as
would any person with a chronic medical condition.
This care should occur under the supervision of a
medical professional, such as a child psychiatrist,
general or developmental pediatrician, or pediatric
neurologist. For an adult individual, the medical
professional could be a psychiatrist, a primary
provider, or a neurologist. In all instances it should
be a medical professional with expertise in working
with individuals with ASD.
The AAP calls for comprehensive care and care coordination to take place
in a medical home setting. This model of care recognizes the need for
The role of the medical
practitioner starts with
appropriate identication
and continues with
medical testing and
monitoring for comorbid
conditions and their
treatments.
24 25
primary care doctors to treat the whole patient by coordinating care among
specialists, and involving and supporting the family in care decisions. Due
to the variety of medical monitoring and chronic medical conditions that can
surround an individual with autism, the medical home model provides an
appropriate context for health care.
What is a medical home?
Every individual deserves a medical home. In 2002, the American Academy
of Pediatrics released a statement calling for a medical home for all children
and youth with special health care needs. The AAP describes a medical
home as a “model of delivering primary care that is accessible, continuous,
comprehensive, family-centered, coordinated, compassionate, and culturally
effective.”
In Washington State, medical home has evolved into the Patient-Centered
Medical Home (PC-MH), providing comprehensive primary care for children,
youth, and adults. The collaborative effort of the American Academy of
Family Physicians, the AAP, the American College of Physicians, and the
American Osteopathic Association established a set of principles to enhance
patient-centered care (2007).
The groups recognized the value to all of a health care setting that facilitates
partnerships between individual patients, families, personal physicians, and
specialists for children and adults through the lifespan. To learn more about
the Washington State Patient-Centered Medical Home, go to http://www.
medicalhome.org/
Treatment Goals
The primary goals of treatment are to maximize an individual’s ultimate
functional independence and quality of life by minimizing the core autism
spectrum disorder features, facilitating development and learning, promoting
socialization, reducing maladaptive behaviors, and educating and supporting
families (AAP, Clinical Report, Management of Children with Autism Spectrum
Disorders, 2007). (See Appendix 11, American Academy of Pediatrics.)
All treatments - medical and non-medical - should be reviewed at every
visit. The frequency of this monitoring should be individualized to a person’s
specic needs. It includes monitoring an individual’s progress, treating
associated medical conditions, assisting the family in investigating and
accessing appropriate medical and other interventions, and keeping the
family informed about new medical tests and interventions. Adequate time
should be allotted to address these issues.
Medical Areas to be Addressed
Accidental Injury
Increased rates of accidental injury can result from many of the more
specic behavioral abnormalities. Social avoidance can cause excessive
running. Sensory issues can cause ingestion of nonfood items or accidental
burns and lacerations (cuts). Absence of a sense of danger can place the
individual in potentially harmful environments. Monitoring and preventive
anticipation are important.
Aggression
While some degree of aggressive behavior is common in all children at
various ages, children with ASD tend to express these behaviors more
frequently and with greater intensity. Tantrums are common in young
children with ASD. Oppositional Behavior is common in older children and
adults. Tantrums can persist and elaborate into dangerous self-injury,
aggression, and property destruction. Reasons for aggression are varied.
Intervention is dependent on the suspected underlying triggers or causes.
(Appendix 6, Functional Behavioral Assessment.)
Anxiety
In addition to the impaired social interaction characteristic of ASD, some
children will avoid social contact that results in high levels of anxiety (social
anxiety). Generalized anxiety and anxiety secondary to interference with
rituals or routine can also be problematic. Specic aversions (fears/phobias)
can grow to debilitating proportions and prevent participation in formerly
preferred activities. These anxiety disorders can respond to behavioral and/
or pharmacologic treatment.
Attention Decit/Hyperactivity Signs and Symptoms
Attention challenges in children with an ASD can be manifested in poor
discrimination learning, focusing on unusual or partial cues needed for an
adaptive response, and rapidly shifting attention, which may be associated
with increased general activity. Some children with ASD manifest more
of these hyperactive and inattentive symptoms than others. Although
attention-decit hyperactivity disorder (ADHD) diagnostic criteria exclude the
presence of autistic disorder, the target symptoms may sometimes respond
to the same treatments as ADHD in the general population.
While 50 percent of children with ASD are reported to respond to medication
management of “ADHD” symptoms, 20% could not tolerate methyphenidate.
This rate is two times greater than typical peers (Reiersen, Todd, 2008).
Dental Care
According to American Academy of Pediatric Dentistry “Dental Home”
guidelines, all children should be seen by a dentist for routine cleaning and
evaluation by age one or within six months of the rst tooth eruption. The
same guideline holds true for children with ASD. Children with ASD are at
26 27
increased risk for dental and gum disease due to damaging oral habits (such
as the chewing of gravel or other hard material in pica; or tooth-grinding
(bruxism); behavioral or seizure medications that reduce saliva ow or cause
gum overgrowth; mouth breathing due to low oro-motor tone; trauma due
to self-injuring behaviors, seizures or motor disorders; and physical abuse,
to which children with disability are unfortunately at increased risk.
Children with autism often need general anesthesia to tolerate dental
procedures. The treating dentist should have experience working with
children with special needs, particularly if sedation is to be used. Parents
should strive to teach good dental hygiene at an early age since the
sensory aversion associated with tooth brushing may make it difcult, if
not impossible, to teach and implement brushing skills at an older age (See
Appendix 13, Oral Health).
Elopement (Wandering)
According to the Autism Society of America:
It is important that your child has proper identication in the
event that he or she runs away or gets lost and is unable to
communicate effectively. Once a child with ASD becomes mobile,
he or she may decide to walk out of the home without supervision.
Children on the autism spectrum often like to be outside and in
motion, so leaving the home to play outside is common. Once
outside of the home, the child is then vulnerable and may be
unable to get home or communicate where they live. If the child
will tolerate wearing a medical ID bracelet or necklace, get one
(they can be found at your local drug store). However, many
children with autism do not like to wear jewelry, so the next best
option is to place iron-on labels into each garment. Some children
can be taught to carry and provide an identication card from
a wallet or fanny pack and can learn to show their identication
cards if they are not able to verbalize the information to another
person. Some parents have also used specially designed tracking
devises, perimeter systems, or service dogs for children on the
spectrum who are known to elope.
Project Lifesaver is a reliable rapid-response active locating system relying
on state of the art technology and a specially trained search and rescue
team working in partnership with law enforcement to nd individuals.
People may enroll in the Project Lifesaver Program and wear a personalized
bracelet that emits a tracking signal. When caregivers notify the local Project
Lifesaver agency that the person is missing, a search and rescue team
responds to the wanderer’s area and starts a search with the mobile locators
tracking system. Search times have been reduced from hours and days to
minutes. In over 1,500 searches, there were no reports of serious injuries or
deaths. Recovery times have averaged less than 30 minutes.
This program is active and administered in many counties in Washington
through the local sheriff’s ofces. Contact your county sheriff’s headquarters
for more information or visit the national Project Lifesaver website at www.
projectlifesaver.org.
Feeding/Nutrition
Individuals with ASD often display a limited variety of food preferences.
This may be due to refusal to transition between textures, unwillingness to
try foods of a particular color or texture, or difculties related to mealtime.
These food preferences may be a reection of the rigidity with which many
of the individuals function. Their parents perceive their food choices as
unhealthy or too limited. With slow introduction of healthier food choices, the
individuals can generally be encouraged to try new foods. Under-nutrition
and overt malnutrition are rarely seen. A wide variety of dietary supplements
and elimination diets are informally reported to improve or reduce many of
the unfavorable behaviors seen in these individuals.
At this time, there are no conclusive scientic studies to support the use
of these dietary interventions. Individuals with pica (eating non-edibles
like rocks), coprophagia (feeding on feces) or obsessive-compulsive
symptomatology manifesting as food or eating rituals should be referred
for evaluation. Parents of children who experience these difculties should
consult with a professional (speech language pathologist, occupational
therapist, psychologist, registered dietitian, nutritionist, behavior analyst
etc.) who have experience working with feeding issues (e.g., skill decits,
behavioral feeding disorders etc.) in these children. For more information
on feeding teams, go to www.depts.washington.edu/cshcnnut/ and learn
more about the Western Maternal Child Health Nutrition Partners at www.
mchnutritionpartners.ucla.edu.
Mood Disorder
Loss of interest in usual activities, unexplained fatigue, change in sleep
habits (increase or decrease), change in appetite (increase or decrease),
change in concentration or cognition, and signs of distress, such as moaning
or crying for no apparent reason may reect clinical depression. A person
need not show all possible signs of depression to qualify for the diagnosis,
but should have more than one.
The diagnosis should be especially suspected when a recent loss was
sustained; although, because of their core decits, persons with ASD may
not appear as bereaved by death of a family member as would be expected
and might be more affected by loss of an object. Decrease in sleep time,
increase of activity level, unprovoked aggression, loss of inhibition (e.g.,
sexual), increased appetite, irritability, and giddiness or elation, especially if
cyclical, may suggest bipolar disorder.
Again, a person need not show all signs and symptoms. Sometimes the main
clue is a cycle of behavior of any kind (such as aggression, running away,
28 29
self-injurious behavior), often preceded by a few nights of unaccustomed
sleeplessness. All individuals with suspected mood disorders should be
referred for further evaluation and treatment.
Obsessive/Compulsive and Severe Ritualistic Patterned Behavior
Compulsive behaviors and rituals are frequently seen in individuals with
ASD. They can develop from narrow preferences or simple stereotypies
(persistent repetition or sameness of acts, ideas or words). Excitement often
accompanies ritualistic behavior. Attempts to obstruct or distract a person
with ASD from pursuing patterned behavior may easily elicit explosive
reactions or aggression, possibly anxiety-driven. When OCD (obsessive/
compulsive disorder) features are present, they may respond favorably to
appropriate behavioral or pharmacologic interventions or a combination of
both. Atypical antipsychotics, such as Risperadone, are most typically used
for this group of symptoms as well as for self-injurious behavior (ARP, 2007).
Puberty
Several issues occur during adolescence that may require assessment
and monitoring. These include an increased incidence of epilepsy,
especially complex partial seizures, mood disorders (depression and
bipolar disorder), aggression, masturbation and increased interest in
sexuality issues. Interventions are dependent on the underlying condition
and include behavioral and pharmacologic treatment. Developmentally
appropriate instruction about sexuality and issues such as menstruation and
understanding of choices in areas such as birth control are important. (For
more information, refer to Chapter 6 on Sexuality).
Psychiatric Disorders
The core diagnostic component of stereotyped, repetitive behavior and
preoccupations, which can have obsessive-compulsive features, may be
affected by drug intervention. In addition, individuals with ASD often develop
associated or secondary psychopathology (emotional, mental, or behavioral)
that may be responsive to treatment. The rst line of treatment for most of
these problems is behavioral; however in some cases, supplementation with
medication is indicated (AAP, 2007).
Co-occurring psychiatric disorders are other medical conditions that are
associated with and occur in this population at a higher rate than the general
population. Estimates range from 28-78%, with approximately 45-55% of
children with an autism spectrum disorder receiving psychotropic medication
management (Ming, Brimacombe, Chaaban, Zimmerman-Bier, Wagner,
2008). Associated symptoms that are most typically targeted include
irritability, lethargy, stereotypic behaviors, hyperactivity and atypical speech.
While many children with ASD are responsive to medication management,
careful monitoring is indicated due to intolerance.
Seizures
Children with ASD are at increased risk for the development of seizure
disorders, with 20 - 30% or higher prevalence of epilepsy by adulthood
among affected children with severe intellectual or motor disability (Persad,
Thompson, Percy, 2005). The seizure prevalence is less than 10% among
children with ASD who have less severe intellectual or motor impairments
(Rapin, 1995). The types of seizures vary considerably, as is also seen in the
non-autistic pediatric population. If children are exhibiting activity suggestive
of seizures, they should have an EEG (Eltroencephalography measures brain
electrical activity)(American Academy of Neurology, 2004).
There should be a low threshold for obtaining an EEG on children who
are exhibiting activity suggestive of seizures. Importantly, non-specic
EEG changes are quite common in children with ASD across the range of
intellectual or motor impairment, and often cannot be clearly interpreted.
Treatment with anticonvulsant medication depends on the seizure type and
frequency, with close monitoring by a pediatric neurologist during medication
initiation, titration and switches.
Self-Injurious Behavior
Self-injurious behavior (SIB), such as head banging, picking, biting, and
self-hitting, occur in individuals with ASD, especially those with mental
retardation and impaired communication ability. Investigation of potential
triggers or causation is mandatory. Intervention may be behavioral and or
pharmacologic, depending on the suspected underlying reason.
Sensory Issues
Many children with ASD show differences in their responses to various
sensory stimuli. They may have increased or decreased awareness to a
particular stimulus. Sensory issues may contribute to problematic behavior.
At times, stimulus sensitivity may be a manifestation of an underlying
condition such as anxiety mood disorder and will improve with treatment of
the condition. While anecdotal reports of benet from specic interventions
such as sensory integration therapy or a “sensory diet” are widespread,
available study results are limited by the small sample size and further
research is warranted (See Chapter 5, Education, and Chapter 6 Sensory
Motor Processing).
Sleep
Sleep difculties are quite common in individuals with ASD, occurring in 75%
to 95% of diagnosed cases (Ming, Brimacombe, Chaaban, Zimmerman-Bier,
Wagner, 2008). Problems in sleep onset, night waking, and early waking are
particularly frequent, and may reect behavioral and or underlying “organic”
origins. Consequences of sleep problems can include a disrupted family
life, poorer learning and memory for the child, and making aggression and
other undesired behaviors worse. Therefore, sleep disturbance should be
addressed rmly.
30 31
Behavioral strategies to ensure good sleep hygiene should be established. A
medical workup might be indicated. Consult with the individual’s health care
provider about the use of medications, including complementary medication
such as melatonin. Since seizures can disrupt sleep and insufcient sleep can
trigger seizures in pre-disposed children, an EEG should be considered in the
appropriate context.
Stereotypies
Dened as persistent repetition or sameness of acts, ideas or words,
stereotypie behavior characterizes much of the play of young children with
ASD. This can consist of looking at bright objects, listening to repeated
sounds and vocalizations or repetitive motor mannerisms. High rates
of stereotypies can interfere with adaptive learning in school and in the
community. Stereotypies may persist into adulthood. They are more
common and refractory in people with ASD and multiple, often undiagnosed,
sensory decits, and in those with greater degrees of intellectual disability.
The behaviors are often unresponsive to medication.
Tics
Tics are irregular, stereotyped, repetitive muscular contractions which
may mimic apparently meaningful behavior. Tics vary greatly in frequency,
intensity, complexity of expression, and body location. Some clinicians report
a greater-than-chance co-occurrence of tics and Asperger Disorder or PDD-
NOS. Mild non-impairing tics need not be treated. Tics are seldom so severe
as to cause functional impairment or physical damage, for which medication
is usually indicated. In higher cognitively functioning children, behavioral
interventions specically designed to reduce tics may be effective.
Medications
Like any treatment, medications should be reviewed at every follow-up visit.
A variety of medications have been described for individuals with ASD and
several have been researched. However, there is no one medication that
works for every person with ASD. The medication treatment of an individual
with ASD needs to be symptom specic. Hyperactivity, sleep problems,
obsessive tendencies, anxiety, aggression, and self-injury are some of the
symptoms that may be targeted with specic medications. Often, a single
medication will target several symptoms, which can be desirable when
working to minimize the number of medications a child is prescribed.
Medications should be given on a trial basis with close monitoring of positive
and negative effects. Since there are few objective measures of a person’s
response to a medication, reliance on subjective information (parent,
teacher and caregiver reports) is common. The observations of parents
and caregivers should be systematically collected by logs, charts, scales, or
other accepted behavioral documentation. A trial of medication tapering and
discontinuation should be undertaken periodically, under close professional
guidance, to determine its efcacy and whether it is still needed.
Alternative and Complementary Intervention
Interventions have been proposed based on theories of autism causation
such as heavy metal poisoning, dietary factors, and auditory hypersensitivity.
A growing range of insufciently assessed interventions challenge families
and providers to nd a meaningful and appropriate balance in management
that considers safety and efcacy while respecting parents’ rights to pursue
help for their affected children in a manner consistent with their values and
imperatives. Broadly, complementary or alternative (CAM) approaches may
be divided into “biomedical” and “non-biomedical” groupings, the latter of
which include educational, behavioral and other therapeutic strategies.
While anecdotal reports of intervention efcacy exist for most popular
CAM modalities explored in the treatment of ASD, by denition CAMs have
inadequate reproducible scientic research to support condent statements
of efcacy or safety; however, the potential benet for any approach,
including but not limited to “placebo effect,” may be very real. If a CAM
trial is undertaken for a child, one should consider all available information
regarding safety and efcacy to ensure that the chosen intervention will not
impede the implementation, safety or efcacy of other tested treatments
(see Appendix 10, Changing Treatment Options).
32 33
5. Essential Components of Instruction
Considerations
This section describes different components of instruction that should be
addressed with individuals with Autism Spectrum Disorder (ASD) from
kindergarten through high school. It includes an explanation of the unique
learning styles of individuals with ASD and considerations for creating
effective learning environments. Though this section speaks specically to
educaiton beginning in Kindergarten, early intervention is the key to success.
For more information, refer to Appendix 2: Early Intervention-Birth to Age 3
and Appendix 3: Special Education-Three through Five.
This section is best used in conjunction with the rest of the document
because it offers strategies to address skills that form the foundation
for learning and underlie all other areas, e.g., attention, imitation. It
incorporates the information from the other sections and applies that
information to teaching situations, gives specic techniques to address the
other areas, and is intended to work within the general curriculum (see
Appendix 9, Implications for the Education System).
Along with this ATF guidebook, other organizations have helpful guides to
assist teachers and parents in understanding autism. These include The
Puzzle of Autism by the National Education Association (NEA, 2006), and The
Educational Aspects of Autism Spectrum Disorders Manual, from The Ofce
of the Superintendent of Public Instruction (OSPI) in partnership with the
Autism Outreach Project of Washington State.
The NEA states:
The number of children diagnosed as having autism has
increased substantially and many of these students are in
general education classrooms. How can general education
teachers and other education professionals address their
complex communication, social and learning needs? To
assist educators in their daily work, NEA has produced a new
resource in collaboration with the Autism Society of America,
the American Speech-Language-Hearing Association, and the
National Association of School Psychologists.
The Puzzle of Autism is a brief and clear informational guide for all education
personnel who work with students with ASD. The guide explains common
autistic characteristics and suggests effective classroom strategies for
improving the communication, sensory, social, and behavioral skills of
children who have autism.
34 35
A copy of The Puzzle of Autism (PDF, 925KB, 44 pages) may be downloaded
at any time from http://www.nea.org/assets/docs/HE/autismpuzzle.pdf
Washington’s OSPI publication, The Educational Aspects of Autism
Spectrum Disorders Manual (2003), provides information about educating
students with ASD and is benecial to parents, teachers, speech-language
pathologists, school psychologists, and others involved in educational
planning for children on the spectrum. It is available in school district ofces
or online at http://www.esd189.org/autism/documents/Autism_Manual_
Engilsh.pdf The manual is scheduled for an update in the Fall of 2008.
There are numerous methods and instructional strategies that are
specically designed for use with individuals with ASD. Professionals may
incorporate a variety of approaches into instruction, but it is critical that the
method or strategy be:
Matched to the strengths and needs of the individuals
Modied as individuals change
Effective in supporting independence and learning
Learning Styles of Individuals With ASD
Individuals with ASD have the capacity to learn a variety of concepts and
skills. However, because of unique communication and sensory motor
processing issues, it is critical that instruction is designed with their
individual learning styles in mind. Learning styles are based on:
Individual Strengths: Individuals with ASD exhibit varied cognitive
strengths and challenges (e.g., visual, auditory memory, spatial,
kinesthetic). Careful assessment should be integrated to identify an
individual’s unique prole to tailor instruction and accommodations.
Individual Interests: Individuals with ASD may focus on specic topics
of interest. This focus may allow them to develop a unique perspective,
a specic skill, or a depth of understanding; therefore, it is important to
support and expand areas of interest and not extinguish them. Indeed,
these interests can lead to meaningful leisure activities and employment
outcomes.
Individual Motivators: These motivators come from every person’s
need to derive reward for pursuits and interactions. Teachers, through
instruction, build in assumptions of successful motivators such as grades,
praise, stickers, etc. It is important to identify, with the help of family and
the individual, the motivators that will provide incentives toward learning.
Individuals with ASD often have unusual motivators that include completion
of tasks, sensory-based stimuli, special interests, tactile-based stimuli, pace
of activity, etc. Teachers need to understand and tolerate motivators that will
not inhibit the learning environment.
Communication Style: Individuals with ASD have unique abilities and
difculties with regards to communication and language. The communication
process can be made difcult, because professionals may assume individuals
do not understand and then make conclusions based on individual input or
non-input. In teaching, individuals must communicate back understanding to
the teacher. Teachers who are most effective in the communication process
use multiple strategies simultaneously such as visual, auditory, written,
symbolic, etc.
Sensory Motor Processing: Sensory motor prociency involves the taking
in of information from one’s body and the environment through a variety
of sensory channels, interpreting and understanding these sensations, and
developing a response to them. Sensory systems include auditory, visual,
tactile, proprioceptive, vestibular, olfactory, and gustatory. Individuals with
ASD may rely heavily on one or two sensory channels to compensate for
decits in other modalities. Preferences for specic sensory systems may
therefore result in learning styles that are different from typically-developing
peers. For example, individuals may need to pair a motor activity with
learning new material such as isometric exercises paired with multiplication
tables.
Pattern of Skill Development: The premise of instruction is to teach in
a sequential pattern of skill development. Individuals with ASD may have
highly developed skills in one area and be delayed in others. Professionals
should not assume that with a highly developed skill there are not gaps
in learning. Teachers may need to teach holistically rather than sequential
levels. Learning need not be linear to be understood.
Social Understanding: This is the ability of the individual to read social
cues and the context and behave accordingly. Typically, social situations
for individuals with ASD are often very stressful. Teaching techniques that
rely on social situations may cause stress in individuals with ASD because
of the reliance on social relationships. Individuals may have an inability to
participate appropriately in the context of class discussions.
In conclusion, instructional strategies should be based on individual learning
styles and should take into consideration and capitalize upon the aspects of
unique learning styles.
Purpose of Assessment
The purpose of assessment is to develop instruction appropriate to the needs
of each individual. ASD is considered to be a triad of impairments with core
decits in socialization, communication and behavior. It is critical that the
assessment and evaluation process reect those three core areas of decit.
Federal and state guidelines (Washington Administrative Code [WAC] 392-
36 37
172A-03020 and The Educational Aspects of Autism Spectrum Disorders
Manual, 2003) require assessment in the following domains:
Cognitive
Social/Emotional
Academics
Communication
Vocational/Occupational
Adaptive Behavior
However, assessments of individuals with ASD must also address areas
of strengths, interests, and sensory motor abilities in order to get valid
information on which to base instructional strategies. Emphasis on these
additional areas will facilitate the assessment process itself and provide
critical information for developing the individual’s learning.
Assessments, whether ongoing or part of an evaluation need to take into
consideration the unique learning style of the person with ASD. Assessments
and evaluations should include information from the parent(s); data from
previous interventions; criterion-referenced assessments; curriculum-based
assessments; standardized, norm-referenced tests; structured interviews;
and structured observations. On the other hand, most norm-referenced tests
have limited usefulness in curriculum development. Regardless of the tools
used, person(s) conducting the assessment must have a rm understanding
of autism in order for the results to be valid.
Elements that will help to optimize the results of the assessment process
include previous familiarity with the individual, shorter test periods over
multiple sessions, advance notice to the individual prior to testing, and
sensory motor preparation for an optimum level of alertness. An additional
resource for both educators and parents can be found in Appendix 8,
Educational Best Practice Guidelines Checklist.
Aspects of a Learning Environment
Any instruction must include a carefully planned environment that is
predictable, structured and appropriate for the sensory motor needs of the
individual. Environments, including the regular classroom, resource room,
community, and home, can be engineered to support the degree and type of
structure that the individual requires.
Learning and behavior may be enhanced by physical space modications that
include visual barriers, reduced visual or sound distractions, temperature
adjustments, preferential seating, and visual organization of material.
One methodology that can be utilized to enhance the level of structure and
predictability within an environment is the TEACCH system (Treatment and
Education of Autistic and Related Communication Handicapped Children).
TEACCH was developed in the early 1970s by Eric Schopler at the University
of North Carolina in Chapel Hill. The TEACCH program’s position states that
to effectively teach students with autism, a teacher must provide structure,
i.e., set up the classroom so that students understand where to be, what
to do, and how to do it, all as independently as possible. The methodology
utilizes physical and environmental structure, scheduling, and structured
work tasks and sessions to help persons with ASD become more successful
and independent. (See Appendices 4, Least Restrictive Environment, and 7,
Instructional Accommodations and Modications.)
Focus of Interventions – All Ages
Federal law (IDEA, 2004) requires that, to the fullest extent possible, all
individuals have access to, and make progress in, the general curriculum;
however, the instruction must be meaningful, purposeful, and age
appropriate for the individual. The individual with ASD will have specic
goals and objectives that need to be addressed in order to participate and
progress in the general education curriculum.
Particular attention needs to be paid to the following areas to increase the
individual’s ability to benet from the educational experience and become
more competent and independent adults.
Attention
Purpose—Increase awareness of others, develop appropriate learning
processes, establish attention to critical task stimuli, and reduce over-
selective attention.
Target Areas:
a. Acknowledgment of external world.
b. Sustained attention (attending on a regular basis).
c. Saliency (looking at what is important).
d. Joint attention (attending with people).
e. Attention shifting (exibility in attending) event to event, object to object,
object to person, and person to object.
Imitation
Purpose—Prepare for learning complex skills, enable observational learning
from peers and build reciprocal interaction.
38 39
Target Areas:
a. Pre-requisite to imitative learning is that it must be purposeful and
independent.
b. Attention to model: Imitation of movements, vocalizations, verbalizations,
and gestures.
Communication
Purpose—Establish verbal or augmented communication skills; enhance
social interaction as an initiator and responder; enhance comprehension of
events and persons in the environment; provide appropriate alternatives to
challenging behaviors by teaching a functional communication system.
Target Areas:
a. Use and comprehend nonverbal communication (gestures, gaze, and
facial postures).
b. Use and comprehend nonverbal communication and primary vocabulary
and simple sentence structures.
c. Use and comprehend nonverbal communication and vocabulary and
simple sentence structures and grammatical parts of speech.
d. Use and comprehend combined/multiple communicative means.
e. Use communicative means for a variety of reasons (request, protest,
comment, repair, etc.).
f. Use echolalia functionally.
g. Increase use of spontaneous language.
h. Continue vocabulary building, comprehension and use.
i. Develop effective means to communicate needs, wants, desires, and
emotions.
Socialization
Purpose—Establish social and affective contact with others.
Target Areas:
a. Intentional and systematic introduction to social situations with initiation
and respondent acts.
b. Turn-taking – including non-verbal/vocal/verbal turns.
c. Adult-child and child-child interactions.
d. Sharing with others.
e. Ability to give help and accept help.
f. Choice-making.
g. Understanding other person’s emotions and perspectives.
h. Interdependence – be able to assist and accept assistance from others.
i. Sense of belonging: as a son or daughter, sibling, student, or co-worker.
i. Development of a repertoire of expected social behaviors for
environments where the individual lives, learns, works, and spends
leisure time.
j. Development of skills and abilities which lead to positive interactions and
relationships.
Cognition
Purpose—Enhance conceptual, problem-solving, and academic performance
and executive function (exible, strategic plan of action to solve a problem
or attain a future goal).
Target Areas:
a. Utilization of multiple modes of learning concepts and skills (e.g., sorting,
matching, classifying, problem-solving, categorizing, comparisons,
ordinals, sequencing, temporal understanding, spatial understanding).
b. Understanding cause and effect.
c. Abstract thinking.
d. Humor.
Purposeful Play/Recreation/Leisure/Physical Exercise
Purpose—Enhance cognitive, social and motor skills; enhance relationships
between self and environment; shape appropriate use of unstructured time;
increase opportunities to get physical exercise and stay healthy; increase
enjoyment of life.
Target Areas:
a. Intentional and systematic introduction of a variety of play and leisure
skills.
b. Interaction/cooperation with peers.
c. Leisure skill building to include toys, games, hobbies, sports, creative arts
(drama, music, writing, arts and crafts).
d. Recreation and physical exercise to include walking, hiking, team and
individual sports, and other activities that promote good health and
decrease obesity and chronic health conditions.
Self-Determination
Purpose—Enhance the individual’s ability/opportunity to make executive
function decisions (choices and options) through means of communication,
relationship and visual organization; foods, clothing, activities, employment,
residential, roommates, etc. Choices are limited to people’s experience;
broaden the experience, record outcomes, and review visually with the
individual his/her experiences to develop choice.
40 41
Target Areas:
a. Intentional and systematic instruction of sequencing, categorizing, and
communicating preferences.
Essential Life Skills
Purpose—Increase personal independence and create opportunities for
greater community participation including independent living, working and
recreating.
Target Areas:
a. Transitioning within daily activities.
b. Self-help: e.g., toileting, dressing-undressing, eating, feeding, and
drinking.
c. Safety and ability to say “no”.
d. Hygiene.
e. Gross and ne motor coordination.
f. Managing sensory stimuli.
g. Purposeful communication.
h. Productivity of a task.
i. Flexibility of a task.
j. Communication.
k. Self-determination, self-advocacy, choice.
l. Navigating public transportation system(s).
Transition
Purpose—Facilitate integration of the individual into the community in terms
of work or post-secondary education, recreation, and residence.
Target Areas:
a. Generalization of learned skills and strategies to the next environment.
b. Exploration of areas of interest or strength.
c. Selection of community options including work, leisure, residence, and
post-secondary activities.
Sexuality – as determined by student’s team to be developmentally
appropriate
Purpose—Assist the individual to understand and express sexuality in an
acceptable and appropriate manner.
Target Areas:
a. Acquire skills which assist in the development of friendship.
b. Develop personal health and hygiene.
c. Understand changes in the body and how to manage the changes.
d. Develop specic and appropriate outlets to express sexuality.
Behavior
Purpose—Develop functional behaviors that are acceptable in the school,
work, and community environments.
Target Areas:
a. Develop effective means to communicate needs, wants, desires, and
emotions.
b. Develop skills and abilities which lead to positive and acceptable
behaviors.
Description of Teaching Strategies and Methodologies
That Are Data Driven
Teaching strategies need to be based on peer reviewed and empirically
validated evidence-based practices and methodologies for students with
autism. At this time the science heavily favors, but is not limited to,
those based on the science of applied behavior analysis, dened as the
application of behavioral principles for the benet of the learner and includes
simultaneous evaluation of the effect of these applications.
The following section (taken from the Ohio Parent Guide) summarizes
evidence-based practices that should be considered when developing
instructional programs for students on the autism spectrum.
Applied Behavior Analysis
Applied Behavior Analysis (ABA) is the science in which tactics derived
from the principles of behavior are applied systematically to improve socially
signicant behavior and experimentation is used to identify the variables
responsible for behavior change. (Cooper, Heron & Heward, 2007)
ABA includes nding out the connection between an individual’s behavior
and his or her environment. In other words, what is causing the behavior?
ABA uses direct observation and measurement of behavior and environment.
Measurement looks at how often, what time, how long, to whom, or how
intensely a behavior occurs. ABA also looks at what happens in or to
the environment right before a behavior occurs, otherwise known as the
antecedent behavior. Antecedent behavior includes verbal, gestural or
physical prompts, cues, materials, language, and environmental factors
(sensory input: noise, light, smell, taste, touch), either naturally occurring
or intentionally manipulated to affect a behavior. Positive reinforcement is
used to improve socially signicant behavior. ABA is exible and dynamic
and is adjusted continually based on data from direct observation of a child’s
treatment targets. A substantial amount of research has shown that ABA
can be effective for children with ASD.
42 43
There are multiple components of ABA (reciprocal imitation training,
contextual factors, establishing operations, antecedent stimuli, positive
reinforcement, and other consequences) to help develop new behaviors
and increase or decrease existing behaviors under specic environmental
conditions.
Comprehensive Autism Planning System (CAPS)
This comprehensive, yet easy-to-use system allows educators to understand
how and when to implement an instructional program for students with
autism spectrum disorders (ASD). The CAPS model answers the questions
(a) What supports does my student/child need in each class to be
successful? (b) What goals is my student/child working on? and (c) Is there
a thoughtful sequence to the student’s/child’s day that matches his learning
style. This timely resource addresses adequate yearly progress (AYP),
response to intervention (RTI), and positive behavior support (PBS) in a
common-sense format. The CAPS process was designed to be used by the
child’s educational team, consisting of parents, general educators, special
educators, paraprofessionals, speech-language pathologists, occupational
therapists, physical therapists, administrators, psychologists, consultants,
siblings, and others who are stakeholders in the student’s education.
The structure of this innovative tool ensures consistent use of supports to
ensure student success as well as data collection to measure that success.
In addition, CAPS fosters targeted professional development. Because CAPS
identies supports for each of the student’s daily activities, it is possible for
all educational professionals working with the student to readily identify the
methods, supports, and structures in which they themselves need training
(Henry, Smith Myles, 2007).
Discrete Trial Training
ABA is not synonymous with discrete trial training (DTT), although many
erroneously use the terms interchangeably. DTT is an ABA strategy. DTT
is a distinct and complete behavioral event that includes a discriminative
stimulus or the antecedent (what happens before the behavior), the
response or behavior (what the child is required to do), and the consequence
for the behavior (reinforcement). The term “Lovaas Therapy” comes from
Dr. O. Ivar Lovaas, whose landmark research led to the application of DTT
techniques to teach children with autism.
Social Thinking
Simply put, social thinking is our innate ability to think through and
apply information to succeed in situations that require social knowledge.
Social thinking is a form of intelligence that is key to learning concepts
and integrating information across a variety of settings: academic, social,
home, and community. Limited abilities for learning and or applying socially
relevant information can be considered a social thinking learning disability.
The great difculty encountered when trying to determine if a child has
social thinking challenges is that standardized tests available through
educational, psychological and or speech and language evaluations fail to
reveal problems in this area.
Thus a child’s ability to do well on testing in no way proves or disproves
the possibility that he or she may have a signicant learning disability in
the form of social thinking. The reason that standardized tests lack in their
ability to illuminate decits in this area is that testing needs to be highly
structured in order to cleanly measure the very specic skills that the test
or subtest was designed to evaluate. However, social cognition requires the
complex integration of multiple skills. Thus, standardized test formats, as
written today, are often counter to the evaluation process for exploring social
thinking skills.
Social thinking challenges represent a social executive function problem. The
ability to socially process and respond to information requires more than
factual knowledge of the rules of social interaction. It also requires the ability
to consider the perspective of the person with whom you are speaking.
Perspective taking can be dened as considering the emotions, thoughts,
beliefs, prior knowledge, motives and intentions of the person with whom
one is communicating as well as one’s self.
This ability then allows one to not only better determine the actual meaning
behind the message being communicated but also how best to respond
to that message. Thus applying social knowledge and related social skills
successfully during social interactions requires the complex synchronicity of
perspective taking along with language processing, visual interpretation and
the ability to formulate a related response (verbal or non-verbal) in a very
short period of time (1-3 seconds).
Finally, social thinking challenges do not only reveal themselves during social
interactions, but instead they are present during many academic tasks that
require highly exible abstract thinking such as written expression, reading
comprehension of literature, organization, and planning of assignments.
Some students have tremendous difculty learning math skills. Thus persons
with signicant difculties relating to others interpersonally often have
related academic struggles in the classroom particularly as they get older.
Typically, we start to require more creative thinking, exibility, and
organizational skills to succeed in the classroom curriculum starting in 3rd to
4th grade. Some students begin to show struggles at that time, while others
students manage to hold it together until middle school. It is very common
for students to develop academic problems only when they get older even
when it is determined that this person is “quite bright” according to psycho-
educational measures.
TEACCH
Developed in the early 1970s by Eric Schopler, the TEACCH (Treatment and
Education of Autistic and Related Communication Handicapped Children)
approach focuses on the person with autism and designing a program
44 45
around his/her skills, interests, and needs. Thus, the individual, rather than
the instructional method, is the priority.
The program uses structured teaching in a variety of settings. Organizing
the physical environment, developing schedules and work systems, making
expectations clear and explicit, and using visual materials have been found
to be effective ways of developing skills and allowing people with ASD to use
these skills independent of direct adult prompting and cueing.
Cultivating strengths and interests, rather than drilling solely on decits,
is another important priority. The relative strengths of those with autism
in visual skills, recognizing details, and memory, among other areas, can
become the basis of successful adult functioning (Mesibov & Shea, 2006).
Communication
Communication difculties, both verbal and nonverbal, are inherent in the
diagnosis of ASD. The typical sequence of communication development
is disrupted. As a result, communication skills can range from nonverbal,
gestural and the use of single words, to verbal conversation, and may
include:
Perseveration (repetitive verbal and physical behaviors).
Echolalia (immediate and/or delayed “echoing” of words, music,
phrases or sentences).
Hyperlexia (precocious knowledge of letters and words or a
highly developed ability to recognize words but without full
comprehension).
Dactolalia (repetition of signs), pronoun reversals, inappropriate
responses to yes or no questions, and difculty responding to “wh”
questions.
When designing intervention strategies, it is important to understand both
the individual’s receptive (comprehensive) and expressive communication
skills. Stressful situations that increase anxiety often interfere with the
ability to communicate. Difculty understanding humor, idioms (“keep your
eye on the paper”), sarcasm, and other complex forms of verbal and written
expression is common. Even the highly verbal individual may understand
and use literal (concrete) language, but have difculty with abstract concepts
needed for higher order thinking skills.
A person’s communication ability usually changes over time. Therefore, it is
important to maintain an ongoing communication assessment from diagnosis
through adulthood as this provides current information, which is necessary
to support appropriate communication strategies.
Supporting all forms of communication – verbal, signing, pictorial,
augmentative devices (and often a combination of more than one) –
promotes learning.
Common Communication Options
Sign Language – use of signs alone or paired with speech.
Picture Exchange Communication System (PECS) – involves using
picture symbols to communicate wants/needs, label and so on. The child
goes through a learning process that teaches initiation of communication
and then expands to the use of sentences. Many children who use PECS
develop some verbal skills and may graduate to speech as the primary form
of communication.
Communication boards – can be made with pictures of objects that the
child points to or removes from the board to communicate wants/needs.
Other communication devices – a wide range of devices designed to
enable the user to create longer messages. These devices can also act
as a universal remote, allowing the user to operate electronic devices in
the environment such as the TV, lights, and so on. The speech-language
therapist can assess the child’s abilities to use high-technology devices, such
as iPods and tablets, and make recommendations about the type of device
best suited for the individual’s needs.
Total communication – a communication system that pairs simultaneous
production of speech with manual signs or another augmentative devices
or symbol systems. The child is encouraged to use the word or phrase that
he is capable of producing and supplementing communication with signs,
symbols, and so on, for what he cannot communicate verbally.
46 47
6. Essential Components of an
Instructional Program
In recent years, professionals and families were presented with encouraging
data and reports of successful interventions for individuals with ASD.
Although research documents a number of programs demonstrating
substantial benets for individuals with ASD, differences exist in reference to
funding, location, degree of family and community involvement, available
resources, and program content and structure.
The purpose of the following section is to provide educators, administrators,
individuals, and families with a framework and structure for program
development and evaluation. As noted in this unit’s “Key Areas,” there are a
variety of essential components.
Essential Component 1:
Family Involvement
This section describes the importance
of collaboration between families,
individuals on the spectrum, medical
and educational professionals, and the
community. It includes guidelines for
ensuring high-quality communication
between families and others that
are invested in the success of the
individual with ASD. The Family
Involvement section is best used
in conjunction with the rest of this
document. Just as the family cannot
be isolated from the various aspects
of their child’s life, this section of the
document, which addresses family
participation, must be considered with
all other portions of the document.
The family is the most important
part of a person’s life from infancy
throughout adulthood. It is within the
family context that the individual receives the most support and develops
the skills to relate to others beyond the family. Although both families and
professionals expect individuals to meet current and future goals, it is the
family who will ensure consistent commitment to an individual over time.
Families, educational staff, medical professionals, rst responders, state
and local agency ofcials and community members share the responsibility
Essential Components
Family Involvement
Earliest intervention
Intensity
Predictability and Structure
Generalization of Skills
Functional Analysis of Behaviors
Communication
Assistive Technology
Sensory Motor Processing
Social, Emotional, and Sensory
Regulation
Social Development
Inclusion with Typically
Developing Peers
Progress Monitoring
Supported Transitions Across
Multiple
Environments
Sexuality
Lifelong Support
48 49
of meeting the needs of an individual with ASD. There must be ongoing
collaboration and communication with family members, professionals
and community members. Optimally, it is a partnership where everyone’s
contributions are valued and respected. Families and professionals bring to
the team their own perspectives, responsibilities and strengths.
Each team member should begin the planning process with the same general
mission to promote the independence and satisfaction of the individual to the
extent possible throughout life’s transitions, e.g.: to have a purposeful job,
a home, friends, and a sense of social belonging. While each team member
may bring important pieces of the planning puzzle to the table, incorporating
the pieces into a comprehensive plan requires the collective cooperation
of all team members. Because of the intense challenge of those with ASD,
it is more advantageous for all parties to freely and openly share these
challenges and barriers to assure the most creative outcomes.
As the individual with ASD gets older, aspects of family and school
communication will evolve. To the extent that the individual is able, he
or she needs to be included in all discussions regarding their plan, e.g.:
transition process, teaching priorities, etc. As siblings get older, they can
be involved at the level they feel comfortable. Often a sibling attends the
same school and can lend a unique perspective to the partnership. Peers of
the individual may also offer valuable insight and support to the planning
process and to the individual’s well being.
Throughout life transitions, there are many direct service staff and
professionals who will come and go as part of the individual’s team. The
family’s role is a constant through much of the individual’s life and may
represent stability during the changes. Families vary greatly in their ability
to meet an individual’s needs because of the differing resources they have.
Even when an individual receives educational services in a school building,
much programming may still need to occur at home. Therefore, the roles
and responsibilities of family members, schools, and professionals are ever
changing and evolve over time.
Many individuals with ASD are not reliable communicators, so families may
struggle to know what went on in other settings. Conversely, teachers and
other service providers often lack input about the home setting that affects
the individual during the school day. Some families hire people to work with
the individual at home using funding made available to them through
government sources (such as Medicaid Personal Care) as well as their own
resources. Others coordinate the services but leave the direct program
design and implementation to others. Families and professionals should
engage in ongoing meaningful communication about the individual and the
services being received in order to broker the right supports in the best way
to t the individual and the plan.
Communication
between home
and school is
critical.
The following are guidelines for providing family and professional
collaboration:
Effective Communication
Families and professionals should display mutual respect, keeping
the focus on the individual and his or her strengths, choices,
and needs. Communication should be kept respectful, candid,
condential, and constructive.
Families and professionals should explore options about how
communication channels can best be kept open between home,
school, medical, and other outside program settings. These
options will vary depending on the ability of the individual with
ASD to communicate and his or her age. Commonly used methods
include notebooks passed back and forth, home visits, phone calls,
email, and scheduled visits to the school by parents or caregivers.
Families and professionals should frequently share successes,
progress, and strengths of the individual with ASD, as well as
problems and decits.
Team Process
Families as well as the individual should always be active
members of the multidisciplinary team. The individual’s wishes
and desires should be considered as part of the self-determination
process. Self-determination is dened as a combination of skills,
knowledge, and beliefs that enable a person to engage in goal-
directed, self-regulated, autonomous behavior.
Families should share their hopes and dreams for their children
with the professionals who share their lives (e.g., use of the vision
statement on the IEP). Families should be given the opportunity to
collaborate in the designing of the individual’s program, including
through the IEP process. (Education Best Practice Guideline
Checklist, Appendix 8) After the age of sixteen, this will include
transition planning as well.
Because individuals with ASD typically require lengthy planning
and training for transitioning from school to work, the transition
visioning process should be encouraged before age sixteen.
Families should be an integral part of the ongoing assessment
of the effectiveness of the individual’s program and in any
modications that will be needed.
Information and Advocacy
Advocacy by parents and family members is essential to ensure that children
with ASD have an opportunity to achieve their fullest potential. As important
as professionals are in furthering the knowledge of individuals with ASD
and meeting their needs, parents and family members have a critical role
of educating professionals and policy makers. Parents evolve from the rst
encounter of the concept of ASD. Families and parents need a great deal of
information and support to become educated and able to provide support
and information to others. Because everyone enjoys the opportunity to talk
50 51
about what is important personally, parents are natural advocates as they
talk with other parents about experiences. (Chapter 11, Advocacy).
Essential Component 2: Earliest Intervention
The standard “earlier is better” may serve as a particular advantage for
children with ASD (Lovaas, 1987; McClannahan & Krantz, 1993). However,
identifying and diagnosing ASD at any age allows professionals and families
to address the challenges associated with ASD and develop an effective
program.
Most educators and families agree with the position that intervention
programs are more effective when begun at the earliest age possible.
Services provided in these programs achieve the following outcomes for
individuals with ASD and their families:
Provide the opportunity to intervene to minimize the development
of interfering behaviors and secondary disabilities.
Facilitate gains in attention, imitation, communication,
socialization, cognition, leisure skills, work skills and other
essential life skills.
Help support the development of a young person with ASD,
establish social networks, and reduce family stress.
Increase independence and decrease likelihood of social
dependence.
Teach functional communication strategies.
Reduce societal costs for services that will be needed later in life.
Include the individual with ASD and the family in intervention
planning and implementation to promote generalization and
maintenance of skills.
Essential Component 3: Intensity
Although the duration of intervention (e.g., number of hours per day or per
week) and number of contexts (e.g., home, school, community) encourages
the debate of what constitutes sufcient intensity, what is agreed upon is
that more intense quality intervention generally results in better outcomes
and that the intensity of interventions is determined by the unique needs of
each family and individual.
The following general suggestions may be used to guide decision-making:
Assess the individual’s needs for year round intervention
programming across contexts.
Assess the need for individual vs. group programming.
Focus on assessment-driven individualized programming and
instruction.
Assess the individual’s and family’s strengths and needs in regards
to programming.
Stress ongoing support and staff development of teachers, support
staff, and related services working with individuals with ASD.
Provide individuals with ASD continuity of programming across
people and settings as agreed upon in the Individualized Education
Plan (IEP) or Individualized Family Service Plan (IFSP).
Recognize that effective intervention for ASD requires ongoing
assessment and ongoing individualized programming.
Essential Component 4: Predictability and Structure
Individuals with ASD benet from an environment that incorporates a
structured program tailored to meet their individualized needs. A thorough
structure also enables professionals to stay in tune with daily events that
may create stressful situations for the individual. Professionals and families
need to collaborate to develop effective goals and objectives to create
an environment that promotes continuity, cohesion and consistency to
best meet individual needs and enhance their independence. Uniform and
comprehensive training of these transdisciplinary teams needs to be ongoing
and consistent to support successful educational programming.
To provide the necessary organization in the educational setting, the
following components are critical when providing predictability and structure:
Teaching the concept of “Time” and the Passage of Time
Use calendars.
Create visual daily schedules (to prepare in advance for regular
and unexpected changes in routine).
Use an analog clock to pair routines, activities, and transitions.
The functional and organizational layout of the environment
Provide a safe environment (e.g., adult/child-individual ratio, exit
doors).
Visually identify all areas of the room (using pictures and/or
words).
Use natural boundaries, such as desks, les, and partitions, to
create specic areas.
Clearly dene and visually represent “Rules of the Room”.
Use environmental modications to help manage and tolerate
sensory stimuli.
Utilize materials that enhance play, leisure, academic and vocational
activities
Use hands-on materials and manipulatives.
Use assistive technology (computers, augmentative devices,
switches, assistive listening devices, calculators, etc.).
52 53
Use multiple modalities (e.g., visual, auditory, tactile) and
methodologies to provide information and structure.
Teaching social skills to develop environmental awareness
Clearly dene and visually represent “Rules of the Room.”
Provide social awareness using social skill development activities.
Teach how to read “body language” and gestures.
Teach the understanding of empathy and humor.
Recognize emotions and situations where emotions are expressed.
Essential Component 5: Generalization of Skills
Typically, young individuals will learn incidentally from the activities and
persons in their environment and will generalize these observed skills with
minimal effort. For individuals with ASD, however, it is difcult to utilize a
learned or observed skill in another setting. They do not necessarily model
or imitate observed behaviors and may not understand that a “skill” learned
in isolation can and should be generalized in other environments. For this
reason, programming for appropriate generalized outcomes has long been
recognized as a critical component of interventions for individuals with ASD.
The need for generalization should be considered across a variety of
circumstances, e.g., across time, settings, persons, and behaviors. Time
refers to maintaining the use of a learned skill after the teaching process
has stopped. Across settings refers to the use of a learned skill in settings
outside the teaching environment. Persons refer to the use of a learned
skill with and without the individual who taught the skill and that the skill
can be demonstrated with others. Generalization across behaviors refers to
changes in untaught skills which are related to the skill being taught, e.g.,
teaching an individual to say “Hi” not only increases the use of that word
upon greeting someone, but also increases other greeting behaviors such as
waving, making eye contact, etc., which are not being directly taught.
These forms of generalization all need to be considered in any program
designed to teach new skills to an individual with ASD and specic strategies
to promote generalization need to be incorporated into the teaching process.
Some individuals, however, may over-generalize, which is an over-
application of a concept (product of over-selectivity). For example, if they
determine that the critical feature of an animal is four legs and are not
identifying with the other features, then the individual will assume that all
four-legged creatures are the same animal.
The following are a number of teaching strategies to assist in fostering
generalization:
Skills taught in an instructional environment should lead to
naturally occurring, positively rewarding consequences in everyday
environments. For example: learning to make a peanut butter
and jelly sandwich results in eating an enjoyable snack at its
completion.
Teaching a skill in a variety of situations, settings, or with multiple
teachers helps promote generalization of a skill. Thus, teaching of
toileting skills in a variety of restroom congurations with several
different people assisting can increase toileting skills in most
community settings.
Bringing features or common elements of the everyday
environment into the teaching situation, helps to generalize skill
use in that everyday environment. For example, teaching shoe
tying using the individual’s shoe and shoelaces instead of common
string or pipe cleaners would promote generalization to the real
world task.
Once a behavior has been learned to a consistent high level of
performance, one can shift to intermittent rewards so that the skill
is more resistant to being extinguished if rewards are not given
frequently on some occasions in the future.
Teaching self-management techniques can be useful for promoting
generalization. Self-management involves learning to prompt and reward
one’s own behaviors in various situations outside of direct treatment.
Essential Component 6: Functional Analysis of Behaviors
This section describes issues related to the behavior of individuals with ASD.
It includes descriptions of common behavioral issues and causes. Because
behaviors are functional for the individual, it is important to understand the
intent of the behavior before applying an intervention. This section focuses
on understanding behavior and intervention strategies.
It is best used in conjunction with the rest of the document because
disruptive behavior has a cause and effect relationship with all other
areas of development, inclusion in the community and life experiences.
Difculty communicating needs, a lack of understanding expectations, or a
negative reaction to the environment, can contribute to disruptive behavior.
Appropriate social behavior is necessary for learning, interacting with peers,
and involvement in the community.
In our society, behaviors are often only talked about in a negative context.
“His behavior is interfering, disruptive, or self-defeating.” It should be noted
that persons with ASD may have a dramatically narrower repertoire of
behaviors, particularly in social situations. The effort to reduce maladaptive
behaviors needs to be offset by equal energy to focus on teaching the
individual new, functional, and appropriate behaviors.
Behaviors Serve a Function
Disruptive and disturbing behaviors are sometimes manifested by individuals
with ASD. It is important to consider that behaviors can be very functional
for the individual yet may result in negative outcomes. Understanding the
54 55
behaviors of any individual is very complex. Behaviors vary as a result
of internal factors(e.g., emotion, puberty, maturation, aging, nutritional
changes, overall health, sensory sensitivity) as well as external factors (e.g.,
changes in environment, social pressures, sleep deprivation, behavior of
others, changes in school or personnel).
It is important to identify the antecedents of a behavior and the
consequences that reinforce it. This information can be used to change the
behavior by altering the antecedents and/or the consequences. This operant
conditioning approach is often used in combination with other supports
and strategies. To better understand the complexities of behaviors and
to identify better interventions, one can also use a systematic procedure
called Functional Behavior Analysis (or Assessment), which incorporates the
operant conditioning approach.
Functional Analysis of Behavior and Behavior Interventions
The premise of a Functional Behavior Analysis (or Assessment) (FBA) is that
all behavior serves a purpose. Behavior often achieves some desired goal
or goals. The goal or goals may be escape or avoidance, control (including
meeting one’s own sensory needs), attention, or getting a specic object, as
well as an attempt to communicate.
The goal, therefore, of any behavioral intervention program is to teach
adaptive behaviors and to prevent the development of unwanted or
inappropriate behaviors. Research has shown this to be an effective strategy
in individuals with ASD and other developmental
disorders. Functional analysis focuses on the “ABCs” of
behaviors (antecedent, behavior, consequence) as a
means to understand the purpose or function of the
behavior. Such analysis facilitates the development of
needed skills and, as more functional and socially
appropriate behaviors are learned, problem behaviors
are reduced or eliminated. The use of behavioral
analysis is a mainstay of successful behavioral intervention strategies for
individuals with ASD.
Typically, functional analysis proceeds through the following steps:
The target behavior (skill to be learned or problem behavior to
be eliminated) is dened in terms of observable, measurable
behaviors.
Identify the behavioral antecedents that are needed for the
achievement of a new skill or that can trigger or encourage a
problem behavior. Common reasons for the failure to attain
a learning goal include absence of foundational skills, lack of
understanding of the purpose of the activity, internal or external
distractions, or inadequate reinforcement strategies. Factors that
underlie problem behaviors may include absence of adequate
communication skills, environmental events that trigger the
Teachers and
caregivers need to
view behaviors as
communicative rather
than an intentional
effort to disrupt.
behavior, and adult responses that inadvertently encourage the
unwanted behavior.
An intervention to teach a new skill or reduce a problem behavior
is developed logically from the information gathered during the
functional analysis. The strategy should consider the purpose
of the desired skill or the problem behavior, the individual’s
developmental level, the need for structure and consistency,
the intervention setting, and the need for collaboration between
parents and professionals in addressing the problem.
Consequences that strengthen or weaken the occurrence of the
target behavior must be identied. Particular attention must be
given to individual differences in the effectiveness of reinforcer
behavior strategy among individuals as well as the schedule for
the occurrence of the consequence.
The impact of the intervention strategy is evaluated through
regular reviews of objective data. Interventions are then adjusted
or revised accordingly. (SeeAppendix 6, Functional Behavioral Assessment.)
Behaviors Change Over Time
Challenging behaviors that an individual exhibits as a child may disappear
with maturity, or behavioral challenges may become more prevalent due to
changing conditions. Sometimes the behaviors an individual exhibits do not
change but are perceived differently by others as the individual ages and
physically matures.
It is important that the behavioral history of the individual be well
understood by all persons participating in the care and education of the
individual. His or her unique reactions to common as well as novel situations
and intervention strategies that have been successful are important
considerations in designing successful interventions.
Inuences on Behavior
Behaviors are inuenced by the characteristics of ASD and by environmental
issues.
Some behavioral inuences include:
Stress/Anxiety – Stress and anxiety are often key factors triggering
behaviors characteristic of people with ASD. There are many worries that
lead to stress. Such worries may include changes (or anticipated changes)
in schedule, interactions with peers, and pressure to perform. Stressors
need to be understood, monitored and controlled with care and respect for
the individual’s perception and future needs. Individuals with ASD may view
causes of stress differently and have varied reactions to stress. All caregivers
and providers must be aware of and manage their own stress levels.
Individuals with ASD experience awareness of and often negative reactions
to the stress of others.
Physiological Factors – Challenging behaviors may occur more frequently
or intensely when physiological difculties are present. These factors may
56 57
include lack of sleep, medication changes, hunger, and illness (chronic or
acute). An individual with ASD may not understand why he is experiencing
these difculties and/or may not be able to express these concerns in a
functional manner. The functional analysis must assess if these factors are
present and their effect on the behavior.
Sensory Sensitivities – Many individuals with ASD present with sensory
sensitivities and/or sensory preferences that are very different from the
typical population. Behaviors may occur when an individual encounters
a sensory experience that is unpleasant or painful. These sensitivities
may be auditory, tactile, taste, visual, or others. Additionally, the sensory
experiences that trigger a behavior for an individual with ASD may be subtle
and generally uneventful for others. At times, simply the anticipation of the
experience can trigger a behavioral response. The functional analysis must
consider the unique sensory prole of the individual when determining the
function of a behavior.
Finally, successful interventions targeting specic challenging behaviors may
vary greatly and include a blend of interaction strategies, structure, and
medical support. Some problems may need to be tolerated or set aside for
a time while focusing on more dangerous or interfering behaviors (i.e., pick
your battles). Successful interventions sometimes require an adjustment
period, during which the individual’s behavior may seem more challenging
than it was prior to intervention. Seek agreement and commitment from
all team members and allow interventions to work by implementing them
consistently and giving them time.
Positive Behavior Support
Positive Behavior Supports (PBS) work hand in hand with the Functional
Behavior Analysis process that was described above. PBS is an approach
or process that can be utilized to develop individualized interventions for
children presenting with more complex or severe behaviors. The strategies
used within a PBS plan to bring about positive behavioral changes in
children, include the teaching of new skills, preventing the occurrence of
the challenging behavior, and supporting the child in achieving meaningful,
long-term outcomes. This is a much more proactive approach to dealing with
difcult behaviors in that it is a proactive versus a reactive strategy and is
also focused on long-term interventions as opposed to a quick x.
The PBS process begins with the formation of a team of individuals who
have concerns about a child’s behavior. PBS is most effective when it is
implemented across all environments – consistency and continuity are key.
The next step in the process is to conduct a FBA. After the function of the
behavior is identied the team can begin formulating the behavior support
plan. It is within this plan that (1) specic strategies for modifying the
curriculum, environment or activity are identied, (2) specic procedures for
teaching the new skills are identied, and (3) strategies are implemented to
ensure that the new skills are learned and that the challenging behavior is
not maintained. Each of these steps will be further explained in the following
paragraphs. (Also refer to Appendix 6, Functional Behavioral Assessment.)
It is within this plan that:
1. Specic strategies for modifying the curriculum, environment or activity
are identied,
2. Specic procedures for teaching the new skills are identied, and
3. Strategies are implemented to ensure that the new skills are learned
and that the challenging behavior is not maintained. Each of these steps
will be further explained in the following paragraphs.
Frequently, modications can be made to the environment, curriculum,
delivery of instructions etc. to reduce the likelihood that the child will need
to rely on the challenging behavior for whatever function it serves. Some
strategies and modications to consider are reviewing rules, allowing for the
child to make choices, reducing distractions, using visual supports such as
visual schedules and instructions, using timers to help facilitate transitions,
and providing the child with verbal and visual strategies to assist with self-
regulation strategies.
The second step in the PBS process is the actual teaching of replacement
skills that serve the same function as the challenging behavior but are more
appropriate and desirable. It is critical the replacement skills be efcient
and effective. They need to work as well or better then the current undesired
behavior that they are engaging in. It is also important to consider the
child’s current skill level including cognitive level and communicative abilities
when determining replacement behaviors. Ensure that the replacement
skill being introduced addresses the function of the challenging behavior.
For example, if the child wants out of an activity then teach the child to
communicate the concept of nished or break.
The nal step in the PBS process is to ensure that the challenging behavior
is not maintained and that the new skills are learned and applied. It is vital
that all adults interacting with the child respond in a consistent manner
that will make the challenging behavior ineffective. In addition, rewards for
appropriate behavior need to be equal to or exceed the rewards the child
gives themselves through the use of the challenging behavior. A good rule of
thumb is that the appropriate behavior needs to be positively reinforced four
times for every one display of the challenging behavior. Data needs to be
gathered on the frequency of occurrence of the challenging behavior and the
effectiveness of the replacement behavior to determine the success of the
PBS plan.
A majority of the information in the above PBS section was adapted from
the Center of Social and Emotional Foundations for Early Learning. Their
website contains many help sheets and training modules on behavior, FBAs
and PBS plans. Please see http://csefel.vanderbilt.edu/briefs/wwb10.html for
additional support and information on this subject.
58 59
Behaviors Require Brainstorming and Teamwork
Successful intervention for challenging behaviors requires all persons
involved with the individual (the team) to work together to meet the needs
of the individual with ASD. Flexibility is required on the part of all team
members to establish and maintain communication with each other and to
apply consistency in implementing the agreed upon intervention(s).
The team must assess the situation, identify the individual’s needs and
abilities and implement strategies to assist the individual in learning and
using appropriate behaviors. The process of assessing, teaching and learning
appropriate behaviors may sometimes proceed quickly or may require a long
period of time, the involvement of many people to assist, and the systematic
testing of a variety of strategies.
There is a dynamic relationship between the educator, parent, others
involved and the person with ASD. Priorities and goals of each are
contributors to problems (lack of unity and confusion) and successes
(cooperation, compromise, and consistency). Individuals working together
as a team must be willing to share resources and personal limitations. They
must be willing to compromise. They must be willing to make the most
of the creativity that can exist within the team. Be prepared to do things
differently.
Essential Component 7: Communication
The Communication section describes the unique patterns of communication
associated with individuals with ASD. Included are ideas on how to assess
the purpose of communication and strategies for improving communication.
This section is best used in conjunction with the rest
of the document because the ability to communicate
affects all other areas of learning, socialization, and
behavior, and they in turn are affected by
communication abilities.
The ability to communicate one’s feelings and
thoughts to others has a profound effect on quality
of life both immediately and long term. Without an
effective communication system, it is very difcult
to navigate through life. In addition to individuals who have obvious
communication challenges, there are many individuals with ASD who may
only appear to be capable communicators. In fact, those individuals may
not be effective communicators and that can limit their ability to meet their
potential.
Communication difculties in both verbal and nonverbal are inherent to the
diagnosis of ASD. The normal developmental sequence of communication
is disrupted in persons with ASD. Communication skills can range from
nonverbal, gestural, the use of single words to verbal conversation and may
include the following communication difculties:
Supporting all forms
of communication—
verbal, signing,
pictorial, augmentative
devices—(and often a
combination of more
than one)promote
learning.
• Perseveration (repetitive verbal and physical behaviors),
• Echolalia (immediate and/or delayed “echoing” of words, music, phrases
or sentences),
• Hyperlexia (precocious knowledge of letters/words or a highly developed
ability to recognize words without full comprehension) and to a lesser
degree,
• Dactolalia (repetition of signs), pronoun reversals, inappropriate
responses to yes/no questions, and difculty responding to “WH”
questions.
Communication difculties impact all other areas of learning, socialization,
and behavior. When designing appropriate intervention strategies, it is
important to understand the individual’s receptive (comprehension) and
expressive communication skills. Stressful situations that increase anxiety
often interfere with the individual’s ability to communicate. Difculty
understanding humor, idioms (“keep your eye on the paper”), sarcasm and
other complex forms of verbal and written expression is common.
Even the highly verbal individual may understand and use literal
(concrete) language but have difculty with abstract concepts. A person’s
communication ability usually changes over time; therefore, it is important
to maintain an ongoing communication assessment from diagnosis through
adulthood as this provides current information, which is necessary to support
appropriate communication strategies.
It is important to understand the individual’s unique communication style
and/or skills which leads to development of a method for communication.
Supporting all forms of communication - verbal, signing, pictorial,
augmentative devices (and often a combination of more than one) promote
learning.
In addition to the development of an effective communication system,
consider use of the following modications and strategies.
Modications
The communicating partner needs to fully understand that
situations, certain individuals, sensory issues and stress will affect
the quality of communication and the communication intention.
Modify the speaker’s language and provide visual supports if there
is no response or undesired response to a direction or question.
Allow time for auditory processing and formulation of information.
For example, instruction and conversation may need to move at a
slower rate.
Develop a protocol to gain the individual’s attention. The protocol
should include how to initiate joint focused attention.
60 61
Strategies
Encourage meaningful imitation. Since imitation is one of the
precursors to the development of functional language, build in
ample opportunities for activities to develop imitative skills.
Help the individual focus attention on the speaker. This will
maximize the impact of any direction, question, or information.
Determine the communicative intent and other possible functions
of non-verbal and verbal behaviors to establish their meaning. For
example, if a person hits when frustrated, teach an appropriate
behavior that communicates that they are frustrated, reduce the
frustration or both.
Integrate communication strategies into all daily activities.
Teaching communication strategies in a step-by-step approach,
starting in an organized environment, will assist generalization to
other environments.
Use vocabulary and grammatical structure at the individual’s
comprehension level.
Consider using rhythm and music.
Teach turn-taking and joint attention.
Provide the individual with multiple opportunities to initiate
interactions, make choices, and have peer-to-peer contact on a
daily basis across all environments.
Consider supporting receptive communication as well as
expressive communication through both nonverbal and verbal
methods: visual supports (object boards, pictures, gestures, sign
language) and voice output communication devices.
Facilitate the initiation of conversation and provide opportunities to
practice language rather than waiting for the individual to initiate
contact.
During transitions from classes, buildings, work: offer a summary
of successful communication strategies to appropriate personnel.
Essential Component 8: Assistive Technology
Assistive technologies are applications (either hardware or software)
designed specically to assist individuals with disabilities to overcome
barriers. In compliance with IDEA, schools are responsible for determining
what assistive technology(ies) is/are appropriate for an individual with a
disability in order that the individual may receive a free and appropriate
public education in the least restrictive environment.
Assistive technology is dened as…“any item, piece of equipment, or
product system, whether acquired commercially off the shelf, modied,
or customized, that is used to increase, maintain, or improve functional
capabilities of individuals with disabilities” (IDEA, 2004). In addition,
assistive technology services must be provided in order that the individual
with a disability is able to successfully select, acquire, and use an assistive
technology device.
Caution should be taken not to limit the consideration of assistive technology
to expressive communication only. While augmentative communication
devices can support a signicant “breakthrough” for some individuals
with ASD, there are many other ways in which to use technology within
an educational program for individuals with ASD. These are categorized
in several categories. (See Appendix 14 section on Assistive Technology.)
Examples follow.
“No” Tech Tools
No tangible item or material is involved
Clear physical and visual boundaries
Elimination of extraneous visual stimulation
Proximity of staff to individual
Low Tech Supports
These require the individual or staff person to utilize an item that typically
is not electronic or battery operated. These items are typically low-cost and
easy to use.
Dry Erase Boards
Clipboards
Three-ring binders
Picture Symbol Cards
Choice Board (no voice output)
Ear Plugs
Use of a pointer
Visual Schedules and Routines
Mid-Tech Tools
These include battery-operated devices or simple electronic devices requiring
limited advancements in technology.
Tape recorder
Timers
Calculator
Head Phones
Assistive Listening Devices
Portable Word Processor
Simple Voice Output Devices
High Tech Tools
These complex, typically high cost devices require some training for effective
use.
Computer Software and Adaptive Computer Hardware
Video Cameras
62 63
Complex Voice Output devices
PDA, I-Pod
Tablet
Educational teams should consider carefully the advantage of assistive
technology in all aspects of the individual’s program. Inclusion of “low tech,”
as well as “high tech” tools should be considered. Finally, teams should
identify how technology may assist the individual not only to effectively
communicate, but also to access the general curriculum and to make
progress on individual goals and objectives.
Essential Component 9: Sensory Motor Processing
This section describes issues in sensory motor processing for individuals
with ASD. It includes a denition and explanation of terminology in order
to provide a common understanding of the issues involved. It also includes
practical strategies and guidelines for developing sensory supports in all
environments. This section is best used in conjunction with the rest of the
document because the individual’s ability to process sensory input from the
environment affects all other areas of learning, socialization, and behavior.
Sensory motor processing challenges limit the experiences and environments
in which an individual with ASD can function successfully. The identication
of strategies to address these challenges can expand the opportunities for
relationships, work, and leisure in which individuals with ASD can participate.
Sensory motor processing involves the ability to take in information from
the environment, organize it, make sense of it, and formulate a response.
Normally, this happens automatically. When the system is working well, we
can screen out unimportant stimuli, pay attention, respond appropriately
and move through the environment uidly. When the sensory system is not
functioning well, (regardless of the reason), an individual may nd it difcult
to pay attention and formulate responses that make sense. In addition,
people may shut down or overreact to incoming stimuli and have difculty
moving safely and freely.
The senses that the brain uses to take in information include the well-known
senses of sight, hearing, taste, and smell, and three other systems that
are very powerful - the tactile, proprioceptive and vestibular systems. The
tactile system involves information that comes from contact with the skin.
Light touch can activate the ght-ight-fright response and deep pressure
touch can calm the nervous system. The proprioceptive system registers
where your body is in space through the joints, muscles and tendons. The
vestibular system assists in balance, coordination and movement.
It is important to be aware that individuals with ASD will likely have difculty
in one or more of these sensory systems. For example, over-sensitivity
to sounds, light, touch, or movement can indicate sensory defensiveness.
This may be characterized by unexplained emotional outbursts, stereotypic
behaviors such as rocking and pacing or fearful avoidance of contact with
people and objects in the environment.
Recommended strategies for working with individuals who demonstrate
defensiveness include:
Avoid touching the individual without giving a verbal cue rst.
Make boundaries around the individual’s workspace and establish
each individual’s space as part of the classroom rules, using carpet
squares, masking tape or furniture.
If the individual needs to be touched, use a rm but kind touch,
rather than a light tap.
Decrease the amount of visual and auditory distractions in the
room.
Provide structure and predictability.
Provide additional support during transitions between lessons and
between places in the building.
Other sensory challenges may result in problems ltering incoming stimuli,
organizing the information and developing a response to it. This may be
characterized by difculty directing and shifting attention, maintaining
alertness for a task and executing a sequence of steps to complete a task.
Specic strategies must be tailored to the individual’s needs and challenges.
The following suggestions serve as guidelines when developing sensory
supports in all environments:
Determine an individual’s tolerance or comfort with input from
various sensory channels.
Identify behavioral indicators of excessive stimulation (e.g.,
covering ears or eyes with hands, body rocking, hand apping,
withdrawing).
Conduct an environmental assessment to identify problem stimuli
(e.g., lighting, noise, odors, textures, and limitation of personal
space).
Proactively modify the environment to accommodate sensory
motor processing needs (e.g., reduce noise with sound absorbing
materials, keep visual stimuli to a minimum, create study carrels
and clear boundaries for work areas).
Determine the need for appropriate sensory input throughout the
day (e.g., deep pressure, movement, and materials to manipulate
during instruction or work time).
Provide opportunities for heavy work (e.g., activities requiring
exertion) throughout the day. Examples include stacking/
un-stacking, pushing carts/trash cans, holding doors, washing
chalkboards, crushing aluminum cans for recycling, and sweeping
oors.
64 65
Provide access to suspended equipment (e.g., swing in corner of
classroom or gym) if indicated.
Incorporate movement activities and manipulative materials
into instructional time and provide breaks for additional physical
activities and/or sensory input as needed (e.g., exercises, walks,
mini-trampoline).
Schedule regular “sensory breaks” during the day as needed.
Activities during these times may include joint compression/
traction, using hand held objects that provide vibratory or
pressure touch input, movement, or calming music.
Provide opportunities for the individual to indicate a need for
strong sensations or access to equipment at times other than what
is regularly scheduled as part of the routine.
Determine environmental/task modications that may help in
reducing the motor challenges facing the individual (e.g., desk/
chair height, writing utensils, position/type of work materials).
Allow the individual to stand at the chalkboard or an easel to work.
Standing will provide needed input into trunk musculature that will
help the individual stay alert and focused on the task.
Essential Component 10: Social, Emotional, and Sensory
Regulation (Modulation)
Social, emotional, and sensory regulations are skills difcult for individuals
with ASD. These skills lie at the core of an ASD, making interpersonal
interactions overwhelming, frustrating, and stressful. Often, these difculties
portray the person with autism as “choosing” to be disengaged from social
interactions due to a lack of interest or desire, even when that is not the
case. Communication difculties combined with atypical visual and auditory
perception in ASD makes traditional learning challenging. Strategies such
as those of the Incredible Five Point Scale (Dunn Buron & Curtis, 2003) and
How Does Your Engine Run?® A Leaders Guide to the Alert Program® for
Self-Regulation (Williams & Shellenberger,1996), help persons with autism
learn; social, emotional and sensory regulation skills.
How Does Your Engine Run helps address the parent and professional
concern of what to do and more importantly increases the person with ASD
understanding of how they can manage themselves, and come to know what
to do, and when to do it.
The 5-point scale is a technique used to help a child break down an abstract
concept into a visual system that is easier to understand. For example, a
concept such as using appropriate voice volume can be broken down into
a 5-point scale, with 1=no voice, 2=whisper, 3=normal voice/dinnertime,
4=loud voice/playing outside, and 5=screaming. A visual representation of
the scale is used as the scale is introduced and explained to the child. It is
reviewed repeatedly so it becomes very familiar.
A picture of the scale is later used as a visual support to remind the child
to use an appropriate voice level. The teacher points rst to the level the
student is using, and then slides her nger down to the appropriate level for
a given situation. For example, if the child was screaming while the family
was in the store, the parent would point to number 5, then move her nger
down to 3 – an acceptable level.
A professional who is knowledgeable about sensory motor processing
should be consulted for specic strategies for any individual. Generally, this
professional is an Occupational Therapist.
Essential Component 11: Social Development
Impaired social development is one of the three core challenges in
individuals with ASD. Social development is dependent on other areas of
development, especially communication and sensory motor processing.
Socialization requires communication skills in order to have successful social
interactions and group experiences. In addition, the ability to seek out and
enjoy the social interaction is dependent on the individual’s ability to focus
on the interaction rather than coping with the environment. Being capable in
social situations allows the individual to successfully engage in activities such
as holding a job, maintaining a living situation and taking care of basic needs
while improving the quality of life.
The social challenges in ASD are inuenced by the individual’s age and
severity of impairment. Usually the challenges
are most severe in the young child with variable
improvement over time that, in part, is
inuenced by cognitive potential, underlying
etiology, if known, and comorbid conditions. The
lack of social understanding affects all social
aspects of work, school, interpersonal
relationships, recreation and community
involvement that all play a part in the building of
self-esteem.
Social skills may not generalize without specic
training; therefore, it is important that social
competence be reinforced in all environments (including the workplace),
especially for those individuals who are in transition. Specic strategies
and supports for social development and related skills must be provided to
individuals with ASD.
There are several levels to consider when providing social strategies and
supports. When assessing the social competence for individuals with ASD,
it is important to look at the quality (content and meaning) of the social
interactions vs. the quantity (amount) of social interactions. One individual
may have difculty tolerating others in their personal space while others may
“get in your face” and talk incessantly on one or two self-interest topics.
Social skills may not generalize
without specic training;
therefore, it is important
that social competence be
reinforced in all environments
(including the workplace),
especially for those individuals
who are in transition. Specic
strategies and supports for
social development and related
skills must be provided to
individuals with ASD.
66 67
Supports need to be developed based on the strengths and interest of the
individual. That is, one individual may need to learn social skills to initiate
social communication in a one-on-one setting with introduction to social
situations in small steps; whereas, an individual with Asperger Disorder may
need to have a repertoire of social topics to learn how to reciprocate and
maintain social communication.
Assessment of social competence should include considerations, for
example:
Age of individual.
Sensory motor processing challenges.
Imitation skills.
Receptive and expressive language skills.
Cognitive abilities.
Individual’s interests and skills.
Environment where socialization occurs.
When developing social goals, the following areas need to be addressed:
Imitation and joint attention (attending with others).
Understanding personal space.
Asking for help and assistance.
Acceptable environmental behaviors, such as not picking nose in
public, bathroom etiquette, etc.
Emotions of self and others.
Identication of emotions and where they occur.
How individual actions affect others.
Initiating, maintaining and reciprocating social interactions.
Listening and attention skills.
Ability to abstract and infer language.
Understanding perspective taking.
Getting the Big Picture.
Humor, slang, sarcasm, joking, teasing.
Accepting rejection by peers.
Playing games, winning and losing graciously.
Turn-taking, waiting for turn.
Understanding non-verbal communication (includes body language,
facial expression, proximity or personal space, gestures and eye
contact.
Age appropriate behavior with the opposite sex, e.g., recognizing
unwanted sexual advances and dealing with them appropriately,
understanding appropriate sexual expression and seeking privacy
for any sexual expression, nding appropriate ways of seeking and
giving affection.
Typical peers’ understanding and successful ways to interact and
support the individual with ASD.
Appropriate workplace behavior as a part of the transition from
school to work. This includes the use of vocational language, how
to take work breaks, dealing with the public, and working with
superiors, subordinates and work peers. In many cases, the degree
to which a person with ASD “ts in” with, and is accepted by,
their work peers will determine their long-term job success. The
employer may require assistance with appropriately introducing the
person with ASD to the workplace and educating the workers with
how to have a meaningful work relation with that person. On the
other hand, once acceptance is gained from work peers, the person
with ASD often has a very strong, vocal support network that
greatly enhances the probability of their long-term job retention and
success.
A number of strategies and supports are available to teach appropriate
socialization and social understanding. Based on the assessment of social
abilities, teaching of these social skills may occur in one-on-one, small
group, large group or a combination of these teaching environments. Due to
generalization issues, a plan should be developed and supported to expand
socialization and social understanding into multiple environments.
Several broad categories of strategies and supports to consider include:
Rehearsal – Scripting, Modeling and Practice.
Role Play.
Social Curriculums.
Social Skills Manuals.
Visual Supports.
Peer Models.
Structured Peer Supports.
Social Narratives.
Video modeling.
Regardless of the environment used or the strategies selected, instruction
in socialization and social understanding must be provided in a well-planned
and systematic manner.
Essential Component 12: Inclusion With Typically
Developing Peers
Models of language and social interactions are an important component of
a successful program for individuals with ASD; however, the mere presence
of typical peers does not constitute successful social-communicative
interactions. Coordinated efforts across school, home, and community
environments can assist to promote natural peer interactions. Families and
professionals may focus on the implementation of a variety of strategies in
68 69
these environments, including activities, routines, and situations to promote
peer-peer interactions.
When selecting strategies and coordinating a plan to support the individual
with ASD in inclusive activities, the IEP team should consider the following
guidelines:
Assess the person’s individual need for inclusion with typical peers.
Provide a natural progression of inclusion (e.g., individual to
segregated classroom to small group to large group instruction).
Plan and schedule activities that promote inclusion and prevent
segregated grouping.
Continue to emphasize the acquisition of skills that will allow the
individual to benet from inclusive experiences.
Include in the transition plan the commitment of all team
members, assessment of placement options (evaluation of a
individual’s learning style and teachers’ instructional style), skills
the individual needs for integration, and training for instructor and
support staff.
Provide specic guidance to peers to recognize and respond to
verbal and nonverbal communicative behaviors of the individual
with ASD. Include strategies that focus on the peer’s ability
to initiate, respond to, and maintain social-communicative
interactions with the individual.
Incorporate environmental supports (such as charts, cue cards,
directions) in conjunction with peer models or as alternatives to
direct adult support.
Assessment of the amount of time the individual can be successful
in an inclusive setting.
Essential Component 13: Progress Monitoring
Assessment is vitally important to determine the effectiveness of any
intervention. The Individualized Family Service Plan (Birth through Two
program, DSHS) or Instructional Education Program team (Three-21,
OSPI) must determine how often the data will be collected, recorded and
the criterion for determining when a particular intervention is successful
or unsuccessful. In order to make collecting data easier, the University
of Washington’s Experimental Education Unit has developed Show Me the
DATA! a workbook of forms and a CD which is available for purchase at
http://depts.washington.edu/chdd/ucedd/eeu_7/projdata_7.html
Essential Component 14: Supported Transitions Across
Multiple Environments
Transition Overview
Individuals with ASD typically have difculty handling even minor transitions
and environmental changes in their day-to-day life. These can cause
signicant behavioral outbursts and regression in learning if they are not
negotiated in a planned manner. Transition to a new service system leads to
many changes for the individual and family including changes in service
providers, location and, in most cases, service procedures.
Considering the potential impact of these changes on the individual, family,
providers, and educators, certain steps need to separate to make the
transition as smooth and problem free as possible.
The following provides guidance for accomplishing successful transition.
Awareness of the problem and appropriate planning are key
to making successful transitions for individuals with ASD. It is
important to know when an individual with autism has particular
difculties with transitions and under what circumstances these
occur. Some individuals will have difculty with transitions that
involve changing physical locations, some have difculty with
changes in activities, and others have difculty with transitions
among adults or people with whom they are unfamiliar. Once the
circumstance is understood, the plan for supportive, preventive
measures can be put in place.
Individuals with ASD should be informed several
times about upcoming changes several times before
transitions are made. Explain “when” and “what”
the transition will be in terms they understand.
Major changes in daily schedules should be
announced the day before, the morning of and just
before the actual change. Providing a “transitional”
object or picture may help some individuals. This is
usually done with a small object or picture uniquely
associated with the next activity or physical location where the
individual is transitioning.
For example, a ball typically used at recess, given to the individual upon
leaving the classroom may ease the transition to the playground.
Some individuals have difculty transitioning from a preferred
activity to a less preferred activity. Transition to the less preferred
activity may be facilitated by indicating to the individual that he will
have an opportunity to return to the preferred activity. Depending
on the individual, return to the preferred activity may need to take
place immediately or may be delayed until a later time. In addition,
clearly explain the expected transition to the individual.
This may be done verbally, using pictures, written words, or schedules
to indicate the activities and in what order the individual will
be expected to participate. As activities are completed, the
individual removes them from the schedule list. This not only adds
Planning, which begins
by the sixteenth
birthday or earlier,
is the key to a
positive outcome
and obtaining a
job.
70 71
predictability to the individual’s life, but also begins building steps
towards early self-management skills.
Major transitions such as entering a new classroom with a new
teacher present transitional issues for everyone involved. The
teacher should attempt to know as much as possible about the
individual before the transition. This is particularly important
for individuals with ASD, because many teachers have limited
experience with these individuals, and individuals with ASD vary
widely in their educational needs. The family and the individual may
also need increased supports for making this a successful transition.
Complete planning and obtain resources before the transition
occurs. It may be helpful to have the individual and parent visit the
new classroom and teacher before classes begin.
Parents should be given as much information about the new setting
and its activities so that they may feel comfortable and prepare the
individual more fully for the new expectations. Some individuals
may need increased stafng support for a brief period at the
beginning to provide instructional, prompting, and behavioral
management assistance. It is important to provide such supports
in a preventative and proactive manner instead of waiting until the
individual has difculty and thus develops an aversion to the new
environment.
The transition from school to work is often considered the most
signicant transition that an individual will face during the school
years. Proactive planning, which begins by the fourteenth birthday
or earlier, is the key to a positive outcome and obtaining a job.
Situational assessments and vocational experiences in real settings
are key to enhancing this probability. The training of parents,
administrators, school staff, and others to assist in this transition is
critical. Full participation of the individual who is transitioning from
school to work also promotes a successful outcome and minimizes
anxiety.
Essential Component 15: Sexuality
“It is a paradox that the individuals about whom we have the most
ambivalence regarding sex education are the persons who most need it”
(Sgroi, pg. 204). “I believe that sexuality education begins at birth” (Monat-
Haller, pg. 41).
This section describes issues relating to the sexual development of
individuals with ASD. It includes an understanding of all of the areas that
are affected by a person’s developing sexuality. This section is best used in
conjunction with the rest of the document, because sexuality is associated
with the ability to communicate, to process sensory stimulation and to
behave appropriately in private and social situations.
Sexuality is a natural part of life that everyone has the right to express
in appropriate ways. A healthy sexual life contributes to personal dignity,
interpersonal relationships and a full participation in life. Many individuals
with ASD have social, communication and sensory difculties that can
impede the development of a healthy sexuality; therefore, it is important not
to overlook this area of development.
Characteristic behaviors and communication barriers displayed by individuals
with ASD pose many challenges in the classroom, the community and
at home. These same challenges may cause difculty for the individual
with ASD in the expression of sexuality. Often the individual’s behavior is
misunderstood by others.
Knowledge of the characteristics of ASD will enable caregivers to better
understand these behaviors as they relate to sexuality, as well as to maintain
a positive approach to learning and living; therefore, comprehensive
educational programs for individuals with ASD must address the issues of
sexuality.
An ongoing hierarchy of skills training should be included in any educational
program for individuals with ASD. This training may begin in the early
childhood years with developing an understanding of one’s body, how it
works, and how it changes. As the individual develops, educational programs
should teach skills for appropriate social interactions, as well as assist the
individual to understand that successful relationships must be mutually
fullling.
Individuals with ASD need to:
Have the opportunity to make friends.
Learn skills that will assist in making friends.
Care for their personal health and hygiene.
Understand how to interpret changes in their bodies as they
develop.
Learn the social consequences of inappropriate behaviors.
Have outlets for their sexuality.
Have help in understanding these needs and in understanding the
needs of others.
All parties associated with the effective social-sexual development of
persons with ASD must resolve all concerns and communication challenges
associated with sexual subject matters. There is much we do not know about
the feelings, desires and drives of individuals with ASD. It is clear, however,
that many persons with ASD have a sex drive and most often express it
through solo masturbation rather than through sexual experimentation with
others. Families need to recognize the importance of this in order to remove
the taboo atmosphere that surrounds masturbation behaviors. There is a
time and a place and there needs to be some reasonable dignity and privacy
associated with it.
72 73
Common Concerns Regarding Sexuality and ASD
a. Public or inappropriate displays of sexual behaviors (exposing self, public
masturbation, etc.).
b. Self-injurious masturbation.
c. Social contact or touching problems.
d. Problems with privacy issues.
e. Inability to empathize with others.
f. Inability to distinguish exploitative behaviors either towards others or by
others.
Sexuality - Teaching Techniques
It is necessary that teaching techniques regarding sexuality be holistic,
functional and concrete. Efforts to address sexuality will include a broad
range of issues and objectives.
A holistic approach will consider all aspects of social preparedness for
relationships. It includes:
An understanding of one’s own body, its function and its
appropriate care.
The development and use of concrete language for body parts and
functions.
Special scripts and rules to aid in the understanding of the feelings
and needs of others.
Similar scripts and rules for the appropriate time and place for
behaviors of sexual expression.
Once the individual with ASD develops social understanding and awareness,
generalizing the information from one situation to the next can be difcult,
especially if the rules are unclear; therefore, it is best to develop rules for
appropriate behavior that are functional. Many times, rules are stated as
expectations with dened consequences. Most people attempt to follow
these rules, as they help in successful relationships and in life. As required,
individuals will also modify rules and behavior to t the situation.
For example, people generally use eye contact with others as a way to
indicate interest and respect. In certain situations, such as in elevators,
this rule changes; in elevators, eye contact is not welcomed and can be
considered threatening. Individuals with ASD will have difculty predicting
these type of expectations unless they are specically taught about, and
supported in, these confusing situations.
Temple Grandin (1995) organized situations by categorizing them into three
categories: really bad (stealing, property destruction and hurting others),
sins of the system (smoking, public sexuality, cursing, etc.) and illegal
but not bad (speeding, double parking, or jay walking). Temple described
that she does not have any social intuition and she relies on pure logic.
She categorizes rules according to their logical importance and not by her
emotion. Her insight is helpful in understanding that persons with ASD may
not draw from common sense but from rote memory of their repertoire of
social rules.
Concrete lessons delivered in a very structured way provide the best vehicle
for learning for those with ASD. Social Stories, the work of Carol Gray,
provides a non-threatening vehicle for rehearsal of appropriate behaviors.
Rules scripts as described by Mirenda and Erickson (2000) provide similar
channels for facilitating social cues that aid the individual in novel situations.
Using strategies, such as those described above, enables the teacher to give
thought to specic terminology and its potential for confusion. Specically,
discussions of a personal or sexual nature are often rich with confusing
messages. For example, using the phrase, “the barn door is open” as a
reminder that an individual’s zipper is down could turn out to be a confusing
and unsuccessful interaction for an individual with ASD.
Essential Component 16: Lifelong Support
The mandated educational services for individuals with disabilities including
ASD end at age 22; however, there is a continued need for support for these
individuals throughout their lifetime. These needs are highly individualized
and are inuenced by changes in environment, health, social, and
employment situations. Continued supports will assist in maintaining stability
for the person with ASD and facilitate successful inclusion in the community.
Using self-determination as the guiding principle, services and supports
should be delivered according to indicated interest and choices of the
individual. (See Appendix 5, Inclusion.)
Supports may be needed in the areas of:
Employment.
Education.
Independent Living.
Community Living: Residential.
Extracurricular Activities.
Community Participation.
Health services and professionals.
Communication.
Social relationships (at all levels of intimacy).
Finances.
74 75
7. Community Transition
This chapter builds upon the previous chapters by focusing on preparation
for and transition to life beyond high school. In this transition, individuals
with Autism Spectrum Disorder (ASD) leave
an entitlement system and enter systems
based instead on eligibility and availability.
In order to take full advantage of the options
available at transition, individuals must be
equipped with the necessary skills to live,
work, and play in the community. Each
individual must be properly prepared to be a
contributing citizen.
Although this section covers topics related
to children’s lives beyond high school, it
urges parents to work on them even while
their children are still in school. This chapter
includes many suggestions for planning for children’s transitions from a
school program to adult services, employment, and living in the community.
It also introduces important legal and nancial planning issues that every
family should think about.
It is important that parents not wait until the child is a teenager to formulate
plans for the future.
One of the most challenging times for families and individuals with ASD
is when an adolescent is about to transition from a school program to the
uncertainty of adult services. Questions about postsecondary education,
vocational training, employment, community living, and sources of nancial
support for the individual with ASD must be addressed. The Individuals with
Disabilities Education Act (IDEA, 2004) requires that transition planning for
this shift to adulthood and adult service systems begin by age 16 years,
although it may begin earlier if the Individualized Education Program (IEP)
team agrees.
The student, parents, and members of the IEP team should work together
to help the student make choices about the individuals’ path for the future.
This will involve discussions about where to live, what kind of work to do,
and what recreation and leisure time activities the person would like to be
involved in when not working. Transition planning through the IEP process
identies the student’s goals and a plan for reaching them in each of these
areas.
Basic Principles of Transition:
1) Start early
2) Involve all service agencies and
funding sources
3) Secure a job before graduation
that can be retained or identify
post-secondary education options
4) Knowledge planning with family
involvement
76 77
One of the biggest changes that parents face at the time of a child’s
transition from education to community services is the shift from the
mandated services of education to the eligibility-driven services of the adult
service system. All children are entitled to educational services. But in the
adult service system there are no entitlements. Individuals must “qualify”
or be determined eligible for services. Transition services within education
should support parents and the child in applying for the services for which
they are eligible.
In addition to the transition planning, IDEA requires that the school provide
the student who is transitioning out of high school a summary of his or her
academic achievement and functional performance. The summary is to
include recommendations as to what assistance is necessary for the student
in order to allow her or him to meet the postsecondary goals.
The section on Community Transition is best used in conjunction with the
rest of this document as transition activities will require many of the same
types of strategies and supports identied for individuals in the early years
of education. Some of the necessary skills an individual needs to transition
to adult life include a communications system, the ability to integrate/self
modulate sensory input, and socially appropriate behavior. The extent to
which an individual is able to transition from individually focused activities
to an adult life, particularly employment, determines the quality of life after
school.
The stakes are very high. During the school years, parents and educators
must partner and strive to prepare individuals with ASD for 40-60 years of
life in the community. The focus of this section is to enhance the information
in previous chapters in order that the dreams and personal visions of people
with ASD become a reality.
School to Adulthood
Overview
Transitioning from school to adulthood is a process of preparing a person
with ASD to be part of the community. In order to accomplish this,
individuals and family members must have a vision of what this life after
school will resemble. This vision will drive the transition services in school
and beyond. To make the vision a reality, the individual’s family members
and other members of the transition team must be committed to the
process. Depending on the severity of the disability of the individual with
ASD, this transitioning process may take a long period of time, with the
possibility that the individual may require and need to receive long term
supports.
Components to Achieve
Develop vision statements of expected outcomes with the full
input from the person with disabilities to the greatest degree
possible at every stage to determine if the path being followed is
leading to the work outcome they desire.
Determine the dreams, interests, strengths, skills and barriers for
the individual who will make the journey.
Include pragmatic, person-centered, and individualized strategies
which focus specically on the vision. These strategies should
support outcomes which will occur in the community.
Develop collaborative efforts among student, family, school and
external agencies. Design a course of action that identies how
the receiving agency will assume the supports and responsibilities
of the process.
Identify the person within schools and agencies who will accept
individual responsibilities in the support and “hand off” the
process.
Assess progress at each stage. Reset tactics, funding, and
supports when necessary.
Take supported opportunities to facilitate independence. Learn
from mistakes and incorporate lessons.
Take advantage of new opportunities made possible by changing
“best practice” laws and funding.
Capture, retain and utilize the necessary nancial support at each
stage of the temporal passage.
Have a long term and ongoing training program for parents,
guardians, educators, administrators, and adult service provider
agencies regarding the transition process, people or agencies
involved, nancing systems, etc. This should include the benets
of community employment vs. sheltered employment and post
secondary education options.
The National Information Center for Children and Youth with Disabilities
(NICHCY) has published a Transition Summary series to help families and
students with disabilities focus on taking denite steps toward a successful
transition. Below is an adapted portion of NICHCY Transition Summary,
(No. 7, September 1991), available in its entirety from www.nichcy.org/
resources/transition101.asp.
Middle School: Start Transition Planning
Involve the child in career exploration activities.
Visit with a school counselor to talk about interests and
capabilities.
78 79
Have the child participate in vocational assessment activities.
Along with the student, use information about interests and
capabilities to make preliminary decisions about possible careers
(academic versus vocational or a combination).
Involving the student, make use of books, career fairs, and people
in the community to nd out more about careers of interest.
Keep in mind that while self-determination needs to be considered, students
with ASD may mature more slowly than others. Therefore, their timetables
for independence may be longer. Beware of eliminating options too
early based on academic and behavioral expectations they may not
have achieved at the same age as their peers.
High School: Dene Career and Vocational Goals
Develop a transition plan that will drive the IEP. Work with school
staff and community agencies to dene and rene the transition
plan.
Help identify and ensure that the student takes high school
courses that are required for entry into college, trade schools, or
careers of interest.
Help identify and make sure the individual takes vocational
programs offered in high school, if a vocational career is of
interest.
Encourage the student to become involved in early work
experiences, such as job try-outs, summer jobs, volunteering, or
part-time work.
Reassess interests and capabilities, based on real-world or school
experiences. (Is the career eld still of interest? If not, redene
goals.)
Make sure the student participates in ongoing vocational
assessment and identify gaps of knowledge or skills that need to
be addressed and address these gaps.
Elements Not to be Overlooked
If eligible for vocational rehabilitative services, make sure the
individual works with a vocational rehabilitative counselor to
identify and pursue additional training or to secure employment
(including supported employment) in his or her eld of interest.
If the individual is not already receiving Supplemental Security
Income (SSI), contact the local SSI ofce shortly before he or
she turns 18 years. Family income is no longer considered in
determining eligibility for benets after the person’s 18th birthday.
If eligible for SSI benets such as SSI income, nd out how work
incentives apply.
Help identify and conrm that the individual takes any special
tests necessary for entry to post-secondary schools (e.g., PSAT,
SAT, ACT). Deadlines to apply for this testing are generally earlier
when accommodations are requested.
Visit the institution, contact the ofce of disability services at
the institution, and conrm that the accommodations needed for
college coursework are available.
Contact the Division of Mental Health at DSHS for Regional
Support Network (RSN) information in Washington counties
regarding mental health assistance to determine a child’s eligibility
for services, including Medicaid and waiver services. Even if the
individual can be maintained on a parent’s medical insurance plan,
Medicaid can be useful as supplemental insurance. In addition,
Medicaid eligibility is required for many adult mental health
services.
Contact agencies that can help, such as disability-specic
organizations like the state or local chapter of the Autism Society
of America. Ask about all services for which the student might be
eligible.
Continue to work through the plan by following through
on decisions to attend postsecondary institutions or obtain
employment.
Education and Training Prior to Employment
Have the IEP team and other disability support organization(s)
help identify postsecondary institutions (community colleges,
universities, vocational programs in the community, trade schools,
etc.) that offer training in a career of interest for the individual.
Identify the accommodations that would be helpful to support
the individual. Make sure that documentation is current on the
student’s IEP. This will support any request for accommodations
at an educational institution. Find out if the educational institution
makes, or can make, these accommodations.
Write or call for catalogues, nancial aid information, and request
an application from appropriate community colleges, universities,
or trade schools.
Practical Tips for Transitions to Work after High School
Getting Prepared
Behavior needs to be understood, managed, supported, and
appropriate for the expected outcomes.
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The individual needs a communication system that allows the
individual to engage in functional and reciprocal communication
with people in his or her environment.
The IEP should emphasize development of vocational independent
living and community participation skills and supports.
Access various agencies that will be needed for support during
school and after graduation (as soon as possible) and encourage
them to join the process. Each organization, if invited, can explain
the process to access agency services, as well as eligibility criteria.
Some of these include, but are not limited to:
• Department of Social and Health Services (DSHS)
* Division of Developmental Disabilities (DDD)
* Division of Vocational Rehabilitation (DVR)
* Division of Services for the Blind
* Mental Health Division, Regional Support Network
• Department of Health (DOH)
• Social Security (SSI)
• Work Source
• Employment Networks
During the school years, focus the transition section of the IEP
on a variety of vocational avenues in the community (situational
assessments). An unsuccessful placement or job experience
should be viewed as helpful in learning about the types of supports
(training, conditions, and technology) the individual needs and
their work preferences.
Focus on abilities not disabilities. Do not assume the person
is incapable of any task. Remember to structure trials using
modication and supports in the community.
Teach to individual strengths and search for a job with the
maximum earning and benets possible. This is needed because
funding obtained from all sources including employment is the key
for the individual to achieve their greatest community integration
potential.
In the nal school year, transition goals will drive the IEP. The
vocational portion of the IEP should focus on the acquisition and
retention of a paid job in the community in such a way as to avoid
loss of government benets (e.g. SSI, Medicaid, Food Stamps,
etc.)
The high school should develop job skills and supports specically
designed or carved out to meet the individual’s and employer’s
needs. Matching abilities with the needs of a business drives job
development. It is helpful to answer the following questions during
this process:
(1)Which jobs match to the individual’s abilities?
(2)What weaknesses are liabilities to placement?
(3)How can these challenges be overcome?
While social activities are important to reinforce and to connect
skills, be cautious not to weaken the transition plan by focusing
primarily on social opportunities. Every student needs access to
skill building opportunities for employment upon transition from
school.
Currently the available support option for day activities after students leave
school is employment. While there is an effort to gure out how to support
transition students with reasonable day activities while they are looking for
work, the goal both in federal and state rule and regulation for all students
is employment (National Council on Disability, 2005). People with very
severe disabilities face substantial obstacles both in terms of their ability to
take advantage of social opportunities and employment opportunities. It is
important not to sacrice one or the other.
Employment is a way in which each person is provided with a natural way
to be truly included in her or his community at least some of the time. It is
difcult to reliably accomplish that in other specialized services, but there
is evidence that it can reliably be accomplished within current spending
levels for about 55%-70% of the people who get employment supports.
Employment provides a lot of service for a relatively small investment for
most of the people supported.
Even for the small number of people that need very high levels of support,
employment is very cost effective over the long-term. With a higher level
investment, employment could be as effective for people with severe
disabilities as it is for people with mild and moderate disabilities.
Reaching Out
When determining an individual’s learning or work potential,
utilize assessments in the community that are meaningful to the
individual in light of expected outcomes.
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Take supported risks. Sheltering and risk avoidance will not yield
community supported employment. A simple adjustment to the
work area or an additional piece of equipment is often all that
is needed. The job developer working with the employer can
facilitate such accommodations and open up possibilities never
explored. Be aware and mindful of the individual’s environmental
conditions, socialization, sensory issues, etc.
Investigate places in the community that offer volunteer
experiences and use them for job sampling. These include:
a. Public libraries.
b. Nursing homes.
c. The Humane Society.
d. Public Television.
e. Hospitals.
f. United Way Agencies.
g. YMCA Programs.
h. Public Radio.
i. Local Universities.
j. Food Banks.
For places that do not offer volunteer experience, create a
“contract” that you can “sell” to the employer and take to each site
for the worker, employer and agency to sign. Document features
will include (but need not be limited to):
a. The job experience is a non paid experience.
b. The job experience is a part of the individual’s transition plan that
drives the IEP goals and objectives.
c. The job experience is not taking work away from regular employees.
d. The individual is not guaranteed a job after the work experience.
e. The individual is covered by worker’s compensation under the school
that is being represented.
Following work sampling, full time employment can be discussed so that this
approach does not represent a barrier to employment.
Identifying and Maintaining Supports
Learn about funding sources, how they work, what to do to
acquire them and what each will offer (by 13-14 years old). Some
agencies that provide or supervise funding include:
a. Association of County Human Services.
b. DSHS, Division of Developmental Disabilities.
c. The Social Security Administration (SSI).
d. DSHS, Division of Vocational Rehabilitation.
e. Washington State Mental Health Division.
f. The Washington State Department of Health.
g. The Regional Support Networks.
Develop knowledge and determine what supports will be needed
and acquire them when needed, beginning with the planning
of school to work transition until acquisition of a paid job in the
community (preferably full time).
Strategies
Promote the individual with tactics similar to those used when
searching for employment to “open doors”.
Some “Sales/Marketing” tools might include:
a. Résumé (including attendance records, awards).
b. Videotape or pictorial of the individual working.
c. Letters of recommendations from supervisors/employers.
d. List of job skills and contributions to work environments.
e. List of supports they will have including transportation.
f. Performance reviews.
g. Productivity on various jobs.
Create partnerships with the business community.
a. Invite business leaders to school, utilize family connections, expanded
social circles (family owned business, churches, professional contacts,
etc.).
b. Go to community meetings and work sites. Discuss employing people
with disabilities in supported employment.
c. Encourage the business community to communicate about their
specic employment needs.
d. Get statements from prior job experience supervisors. Relate positive
and successful experiences from employers of individuals with
disabilities.
In some situations, it may be necessary to modify the goal to fade
supports. Some individuals with ASD require long term or ongoing
supports. Plans should then include identication of funding for
these supports such as the Washington State Endowment Trust,
Social Security Work Incentives, Individual Development Plans,
County wide supports, etc.
Other Issues to Consider
Training for all stakeholders should be ongoing. Use a variety of
resources to train in areas such as job nd, job development, job
carving, self-employment/entrepreneur, job coaching, natural
supports, behavior supports/strategies and modication, funding
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sources and uses, interviewing skills, employer expectations, (job
descriptions, company rules, social etiquette, etc.).
If the individual and his family desire, explore residential options
that may be suitable for the full transfer to adult life to increase
independence.
Agencies who can help with residential choices include:
a. DSHS/Division of Developmental Disabilities Case Manager.
b. Residential Services Providers in city or county.
c. Group Homes.
c. Real Estate Firms.
d. Home and Apartment publications.
e. The Internet.
f. Local Autism Support Groups.
g. Community Alternative for People with Autism (CAPA).
It should be emphasized that residential services often involve long
waiting periods and therefore should be applied for many years
before they are needed.
Recreation for people with disabilities is just as important as it
is for their peers without disabilities. Access to the full range
of recreational possibilities now exists in many communities,
including vacation possibilities. Community recreational sites
as well as the Internet can lead to exciting, person centered
possibilities. Research indicates that individuals with disabilities
can become isolated as they grow older.
Due to lack of mobility, income, and social networks, individuals
with disabilities may have difculty making the right friends
and meeting the right people to assure a quality adult life.
Memberships in religious/cultural afliations (e.g., church or
synagogue), clubs, and recreational programs provide natural and
ongoing support networks that can assist persons with disabilities
in maintaining friendships throughout their life.
Practical Tips for Transitioning to Post Secondary Education after
High School
Students with disabilities have the right and responsibility to pursue a
job after high school which may require additional education or supports.
When this occurs, the transition plan and IEP should support this vision.
Preparation should then start at the beginning of high school for post
secondary learning: such as post-secondary educational prerequisites like
two years of foreign language, etc.
Under the Individuals with Disabilities Education Act (IDEA, 2004), the
school is responsible for identifying and assessing individuals with disabilities
and is mandated to provide appropriate educational instruction and related
services. However, IDEA does not apply to individuals in postsecondary
education, as the individuals themselves become responsible for many of the
services that were once provided for them.
There are three pieces of legislation that impact postsecondary education.
They are the Rehabilitation Education Act (REA) of 1973 (particularly section
504), the Family Educational Rights and Privacy Act (FERPA) of 1974 and the
Americans with Disabilities Act (ADA) of 1990.
Section 504 of the Rehabilitation Act states that “no otherwise qualied
individual with disabilities can be excluded from, denied the benets of, or be
discriminated against by any program receiving federal nancial assistance.”
Although colleges and universities are not required to offer special education
courses, subpart E requires both public and private institutions of higher
education learning to make appropriate academic adjustments and
reasonable accommodations (not modications) to ensure individuals with
disabilities can fully participate in the same programs and activities as non-
disabled individuals.
ADA upholds and extends REA’s civil rights protections to all public and
private institutions regardless of whether they receive federal funds.
FERPA protects the condentiality of individual’s records at a postsecondary
institution.
Although section 504 and ADA require equal access to post secondary
education for individuals with disabilities, once the individual has been
admitted, the individual is responsible for identifying himself as a person
with a disability. He or she must also provide documentation that can trigger
the appropriate accommodations. This accommodation process does not
begin, however, until the individual contacts the college Ofce of Disability
Services (ODS) and provides this documentation. Decisions regarding these
accommodations then are made on an individual basis.
There are four major types of post secondary education:
a. Vocational/technical schools.
b. Community colleges (two year).
c. Colleges.
d. Universities.
Important Considerations for Postsecondary Transition
Check with the postsecondary education facility to ascertain the
requirements necessary to attend.
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Postsecondary options should be explored early in high school to
select the proper course work.
Choose a postsecondary program that provides the services and
supports that will be needed by the individual after graduation.
The individual and families should contact disability coordinators
at prospective postsecondary programs to determine the services
and supports which are available.
The individual should receive training in self-advocacy on how to
request needed accommodations and supports.
Individuals should visit or audit classes from desired schools.
University or college professors are not informed of an individual’s
disability, only of the necessary accommodation. Individuals
and families may consider, if the professors require, additional
information in order to effectively support individual learning.
Electives during high school can be used as remedial courses to
address academic areas of weakness.
Individuals may wish to consider developing keyboarding skills
to assist in assignment completion. Explore other assistive
technology which might support individual learning and
participation. e.g., computer software. (Appendix 14).
Consider taking the SAT and ACT’s tests as early as possible.
Multiple chances to improve scores can be helpful.
Take advantage of tutorials that are available to help with the SAT,
ACT testing process.
Take advantage of tutoring in high school that is available to help
with difcult classes.
Request that a representative from the university/college/
vocational programs attend the IEP to assist in transition activities.
Develop knowledge concerning dormitories, post-secondary
residential housing, roommates, etc.
8. Beyond Academics—Future
Planning Issues
There is a positive new trend towards matching individuals with autism
to work opportunities and job placement, building on the person’s unique
strengths and interests. A well written Individualized Education Plan (IEP)
will include actions that lead to a good transition from high school to the
adult world, including work. The IEP by itself is not enough, however, to
assure that transition to adult life will be successful.
There are other aspects of planning for a child’s future that families must
address, including quality-of-life support for the individual when parents are
not available, legal issues such as guardianship, nancial planning to protect
government benets, and development of an advisory team and person
centered action plan for the child, so that the child has plenty of support and
ongoing therapies and interventions to live a healthy and meaningful life as
an adult with autism.
Despite the growing number of persons with developmental disabilities in
this country, few families have done any futures planning to address these
issues. Like all of us, the child with a disability will be an adult longer than
he or she will be a child, so futures’ planning is critical. Planning for the
futures of people with disabilities is something parents and caregivers must
address – and the sooner the better. Whether the person with special needs
is 4 or 40 years old, it is imperative that families create a plan.
Topics addressed
1. Quality-of-life issues.
2. Legal.
3. Financial.
4. Government benets.
5. Age of majority issues; guardianship, partial guardianship, etc.
Quality of Life
Quality-of-life issues are those everyday things that need to be in place for
each of us to be comfortable in our daily lives. Addressing quality-of-life
issues for our loved one with Autism Spectrum Disorder (ASD) requires
decisions and information regarding:
Where the person will live.
Religious afliation.
88 89
Continuing education programs desired.
Employment preferences.
Social activities preferred.
Medical care required.
Behavior management practices.
Advocacy or guardianship needs.
Trustees identied for nancial planning purposes.
Final arrangements desired.
Detailed instructions for assisting the person with the typical
activities of daily living such as bathing, dressing, feeding, and
toileting.
Description of any special methods of communicating that only the
immediate family knows and understands are included.
Lifestyle Planning—Written Instructions
Essential lifestyle planning is part of a process in which a family records what
they want for the future of their loved one in a document sometimes called
the “letter of intent.” Although not a legal document, it is as important as
a will and a special needs trust. The written instructions or letter of intent
will include information on a variety of important issues, and can be used by
others when parents are not available or unable to make sound decisions.
To guide decision-making for a document of intent, rst start by developing
a person centered plan for your child or loved one who has ASD. After
developing a person centered plan, develop a letter of intent or written
directive that discusses information regarding the needs and desires of the
child with ASD. This document should address lifestyle, nancial, legal, and
government-benet issues. Whether people with ASD function entirely on
their own or need assistance, such a directive can provide instruction for
their daily care, as well as provide guidance for unexpected contingencies.
Putting together a plan for the future should be guided through a process of
learning how someone wants to live and for developing that future plan to
help make it happen. It’s also:
A snapshot of how someone wants to live today, serving as a
blueprint for how to support someone tomorrow.
A way of organizing and communicating what is important to
an individual in “user friendly”, plain language that anyone can
understand.
A exible process that can be used in combination with other
person centered planning techniques.
A way of making sure that the person is heard, regardless of the
severity of his or her disability.
The lifestyle plans are developed through a process of asking and listening.
The best essential lifestyle plans reect the balances between competing
desires, needs, choice, and safety.
Personal futures planning should be guided by attention to the following
values:
Placement of emphasis on interdependency among people.
Remembering that as a group, strengths and talents are multiplied
and weaknesses become less signicant.
Continuing to use the on going process for the person and circle of
friends.
Using a decision making process of goal setting and acquisition of
supports.
Personal Futures Planning
Every person with a developmental disorder should have a plan for the
future. Development of the written plan starts now at this point in time. How
to develop the plan and proceed begins with the following list of ideas that
address the large picture and considerations:
Think about the process of setting short and long-term goals.
• Identify and develop immediate next steps to reach the goals.
• Keep an eye on the future and change in systems, health status,
family status, etc.
• What is the “now” for the individual?
• Who is enrolled in the team?
• What are the roles of the team members?
• What does the person with ASD need to grow stronger?
• Identify steps for next month.
• Identify steps for three months, six months and one year.
• Assess the goals and plans at regular time intervals.
Some specic questions to look at and address in the written directive
should cover:
What are the person’s preferences and needs related to bathing
and dressing?
Does the person have special dietary needs and requirements?
Does the individual have any chronic medical conditions? Who
monitors the medication?
90 91
What is the person’s daily schedule like?
What leisure and recreational activities (music, computer, hobbies,
sports) does the individual enjoy?
What kinds of work activities does the person enjoy?
Who are trusted friends and mentors?
What supports can help the person to live with dignity, quality,
self-esteem and security?
While most people realize they need to plan, for a variety of reasons many
fail to do so. Some believe the task is overwhelming and don’t know where
to nd qualied professionals who understand the needs and how to resolve
concerns. Both the cost of professional services as well as privacy concerns
can be an issue.
Establishing an Advisory Team
As families begin to develop a person centered plan and written directives, it
is important to identify a group of people who will
act as an advisory team. This should include,
when possible, the person with ASD, family
members, an attorney, a nancial advisor,
caseworkers, medical practitioners, teachers,
therapists, friends, and anyone else involved in
providing services to the individual. Having input
from each of these individuals can help ensure
that all parts of the plan are coordinated and
complete.
Should parental support no longer be available,
imagine how much easier and less traumatic it will be for the person
with ASD and his or her care providers if they have detailed instructions
immediately available, rather than having to gure things out on their own.
What could take weeks or months to adjust to, could be shortened to a few
days.
The ultimate goal of the letter of intent or written directive is to make the
transition from parental care to independent or supported living or moving in
with other family members as easy as possible, bearing in mind the comfort
and security of the individual.
Guardianship
As each child approaches age 18, parents need to research guardianship
issues and decide which options are appropriate for the young adult.
Guardianship is a legal determination that involves the child’s ability to
Use videotape to record
the individual performing
activities of daily living,
including communicating.
Consider taping the
individual having a
meltdown and demonstrate
the best ways of
responding if that tends
to be a relatively common
occurrence.
make decisions regarding their own affairs, including nancial, medical, and
educational decisions. If the parents do nothing, when a child turns 18, the
parents lose the legal right to make decisions and sign legal documents for
the child. Determining guardianship can sometimes be a difcult decision.
Parents should discuss the issue with professionals and with other parents
to learn about all the implications. For current information on guardianship
in Washington, refer to the Arc of Washington State documents on future
planning and guardianship at: http://arcwa.org/publications.htm.
Estate Planning
“Who will care when you are no longer there?” is an overwhelming question
that parents of children with disabilities must address, but solutions and help
are available.
Estate planning allows the family to state its wishes regarding the
distribution of the family’s assets and to appoint executors to settle the
estate. In conjunction with estate planning, a trust can be established to
provide supplemental funds for the individual with ASD, but in a way that
maintains the individual’s eligibility for government benets. An estate
planning team should include:
Attorney.
Accountant.
Life underwriter/nancial services provider.
Trust ofcer.
A comprehensive estate plan should:
Provide lifetime supervision and care if necessary.
Maintain government benets.
Provide supplementary funds to help ensure a comfortable
lifestyle.
Provide for management of funds.
Provide dignied nal arrangements.
Avoid family conict.
Once the decision has been made to prepare a plan, nd someone to
help or hire a professional planner. Referral sources are available through
governmental agencies, organizations, or local support groups. Use a life-
plan binder. Place all documents in a single binder and notify caregivers and/
or family where they can nd it. At least once a year, review and update the
plan and modify legal documents as necessary.
92 93
Establishing a Trust
Government entitlements play a key role in the lives of many persons with
ASD by providing money and health care benets under SSI (Supplemental
Security Income), SSDI (Social Security Disability Insurance), Medicaid,
and/or Medicare. A basic understanding of federal and state entitlement
programs is essential in order to be sure that an individual gets all that he
or she is qualied to receive. However, laws change, so it is crucial to hire
professionals with up-to-date legal expertise. Special needs require special
lawyers, or at the minimum an attorney familiar with all the concerns.
In establishing a trust, nancial planning is used to determine the
supplemental needs of the person over and above the government benets
they may receive. First, a monthly budget is established based on today’s
needs while projecting for the future. Then, by using a reasonable rate of
return on the principal, the family identies how much money is needed to
fund the trust. The life expectancy of the person must be considered and
then the need projected into the future using an ination factor.
Once this is done, the family must identify the resources to be used to fund
the trust. They may include stocks, mutual funds, IRAs, 401(k)s, real estate,
and home or life insurance. Professional management for investing the
assets may be done by the trustee, or the trustee may hire advisors.
Legal language has changed over time as state policies and legal decisions
have evolved. When carefully drawn according to strict legal guidelines,
trusts have been able to provide spending money to enhance the individual’s
daily life. Trusts can be a valuable tool for families, regardless of the size of
their estate. Make sure that the attorney and other planning professionals
under consideration for hire have specic ex¬pertise in planning for people
with disabilities.
Information about trusts and special needs trusts is available from The
Arc of Washington State at the following web address: http://arcwa.org/
publications.htm .
9. Autism Awareness Training in the
Community
This section describes the need for autism awareness training for a wide
range of people including professionals, paraprofessionals, college personnel
and students, families and community members who support individuals
with Autism Spectrum Disorder (ASD). It includes the process of identifying
stakeholders who need to be involved, areas that need to be addressed in
training, and delineation of the multiple levels of training. Ongoing training
is necessary to keep all stakeholders equipped with a rapidly changing
knowledge base. With up-to-date information people will be able to
collaborate more effectively and individuals with ASD will be able to access
needed supports and services.
Types of training programs include pre-service training programs, in-service
training programs, training for higher education faculty, and community
and agency training. Identifying people who need training and what type
of information they need should occur prior to their involvement with
the individual with ASD. Training should focus on skill building as well as
empowerment, problem solving, collaboration, and decision-making. Training
should encompass the entire spectrum of ASD.
In planning any training program, it is strongly encouraged that trainers
identify the needs of the audience and tailor training to meet the identied
areas of concern. Educational and community systems as well as parents
can often collaborate to offer comprehensive training opportunities. A variety
of training approaches can be utilized. Given the individual characteristics
involved with ASD, professionals and parents should have the opportunity
to get hands-on, guided practice in order to best apply the information that
they have been offered in a lecture format.
Effective approaches can include lectures, workshops, conferences (state,
local, professional), group study/discussion, undergraduate and graduate
coursework, mentoring, demonstrations, action research, dissemination
of print and multimedia resources, interactive distance learning and
internet access, hands-on experience, guided practice, observation, and
consultations.
Subjects to be covered in training should include (but not be limited to):
Characteristics of autism spectrum disorders.
Best practices.
Recognition and understanding of the implications of associated
medical disorders, e.g., seizures, anxiety, attention disorder.
94 95
Familiarity with a variety of assessment methods.
The use of assessment to guide interventions.
Self advocacy.
ASD as it relates to individual’s differences in learning and
development.
Adaptation of the curriculum.
Motor planning.
Writing and implementation of an effective behavior plan/behavior
management.
Enhancement of social interactions, cognition and perspective
taking (Theory of Mind).
Environmental supports to promote independence (Physical
structure, individual schedules, etc.).
Understanding of play, reciprocity and engagement.
Available resources including relevant journals, lms, books,
articles, and videotapes as well as community resources like
autism supports groups, etc.
Everyone in the community who is part of the individual’s team should
identify training needs. This includes but is not limited to direct service
providers (teachers, instructional assistants, tutors), related service
professionals (speech/language pathologists, psychologists, occupational
and physical therapists, assistive technology specialist), administration staff
(building principal, director of pupil personnel services), school community
support staff (lunchroom personnel, recess monitor, bus drivers, volunteers,
agency liaison), medical providers (physicians, nurses, dentists, hospital
personnel, emergency and college campus health centers, therapists, etc.),
rst responders (law enforcement, reghters, paramedics, emergency
medical technicians), mental health service providers, parents and
caregivers. Training and professional development plans are critical pieces of
any effective program.
Washington State has training for law enforcement on an interactive CD
entitled Interacting with Persons with Developmental Disabilities and Mental
Illness. It is available to all law enforcement personnel on request from the
Washington State Criminal Justice Training Commission.
The specic content for professional development should be determined on
an individual basis. Training activities should be developed based on the
designated needs of the professionals and community members and aligned
with the needs of the individuals with ASD and their families.
Community persons should also participate in training regarding ASD.
Included in this group are private and public providers, business owners,
volunteer community service organizations (Kiwanis, Jaycees, Lions, Eastern
Star), community business/organizations, (churches, libraries, YMCA, YWCA,
Boys and Girls Clubs, Planned Parenthood, police and social work agencies,
foster care providers, re departments). Involve community workers who
would typically touch the life of a person with ASD (grocery store workers,
bus drivers, department stores, malls, pharmacies, restaurants, etc.).
Remember to also involve people/agencies who will be involved in providing
adult services during and after transition to the community. Such groups
as County Developmental Disabilities Human Services, DSHS Division of
Developmental Disabilities case managers, Residential and Job Coaching
vendors, Social Security, Medicaid etc., are examples of groups as are local
college administrators (Ofce of Disabilities) who deal with individuals with
special needs in post-secondary settings.
Information in the eld of ASD is constantly changing regarding both the
nature of the disability and the methodologies and treatment practices. Best
practice information continually evolves through research, so training should
be an ongoing process.
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10. ADVOCACY
Levels of Advocacy
1. Advocating for children
The rst step in becoming an advocate is learning to advocate for one’s own
child. Parents must learn about the diagnosis and what it means for their
child’s development, about the services and supports available to address
their child’s needs, and about how to work with professionals to ensure that
their child’s needs are met. These skills are learned by:
reading pertinent articles, books, and websites.
participating in Individualized Educational Program (IEP) meetings
and other service planning meetings.
talking with other parents who are willing to share what they
know.
attending training and discussions offered by parent support
groups and parent organizations.
2. Sharing information with other parents
The next level of advocacy is sharing information with another parent who
needs it. This can be done informally in the hallway at school, in a parent
support group, or over the phone. It can also be done more formally by
leading a parent support group discussion on a topic or by providing a
training session to a group of parents on a particular topic.
3. Supporting a parent in a service planning meeting
This level of advocacy includes a parent choosing to attend an IEP meeting
with another parent to teach active parent participation. Learning the
process from another adult who is familiar with the IEP process will help the
new advocate to get needs addressed by learning to ask the right questions.
4. Participating in activities to inuence how services are delivered
At this level parents advocate to change or inuence the laws, regulations,
and policies that affect the provision of services their child and other children
with Autism Spectrum Disorder (ASD) or other disabilities need. At that
point, child advocacy becomes systems advocacy.
5. Encouraging a child to advocate for himself
It is important that parents of a child with autism work with the child to be
his or her own advocate. Individuals with autism need to be encouraged to
share their strengths and unique talents with others. This will allow members
98 99
of the community to better understand what individuals with ASD can
contribute to their communities.
Advocates are needed at all levels. Parent-to-parent support is critical for
parents when all they have is a diagnosis and many more questions than
answers. No one is more effective at answering those questions than another
parent who has been in the same place. The Individuals with Disabilities
Education Act (IDEA, 2004) acknowledges the importance of parents
providing information to other parents by providing funding to support at
least one parent training and information center run by parents in each
state. Many parents have served in an advocacy role by helping to create
this document to provide information to other parents.
When parents are educated about a family member’s issues and the service
systems, it is a natural step to take an active role in supporting other
parents and in providing input to public agencies and policy makers about
effective ways of supporting individuals with ASD. By communicating,
parents can help create the schools and communities where the people they
love can live, work and play.
Where to Advocate
There are many areas related to aspects of service delivery where parents’
voices need to be heard. At the local school district or at the state level, the
following are various issues that parents have identied as important.
Education
Increasing the number of educators who understand the
complexities of ASD.
Placing students with ASD appropriately to best support their
needs.
Providing accommodations and or modications tailored to the
student’s needs (not according to the student’s label).
Using research-based methods for instruction.
Providing social skills training and development.
Encouraging the full participation of children with ASD during the
school day and in after-school activities.
Providing effective transition services to ensure jobs and
community living outcomes.
Increasing partnerships with families.
Medical
Increasing early screening and diagnosis opportunities.
Educating medical personnel who may come in contact with
children with ASD.
Increasing the availability of specialists knowledgeable about ASD.
Encouraging medical personnel to work in partnerships with
families.
Social Services
Increasing the number of providers who specialize in the unique
needs of children and adults with ASD.
Making providers more easily accessible.
Encouraging providers to work in partnership with families.
The Importance of Parent-to-Parent Support in Advocacy
Parent-to-parent support offers emotional support, and serves as a step
in teaching someone else how to advocate effectively. Many organizations
working to improve supports for those with disabilities originated with
concerned family members exploring change. In every way possible, online
or through parent support groups, the recommendation is for parents to
stand with other parents and family members. It is one basic method of
becoming involved in systems advocacy. In Washington, parent support
is available through organizations such as Washington State Parent to
Parent (www.arcwa.org) and Washington State Fathers Network (www.
fathersnetwork.org), Asian Parent Power (www.php.com/parent-parent-
power), and others.
There are countless decisions to be made in the process of living with
ASD. Since such decisions are individualized, families may nd themselves
choosing different treatment options or paths of education from those
of other parents. They might be aligned with the views of a particular
organization that is different from what other parents or family members
prefer. The situation of each child is different and it would be easy to feel
that there is little common ground with others.
It is unrealistic to expect everybody to agree on every choice. It is important
to respect each family’s choice and also stand with them to support policy
changes or legislative changes that will make a difference in the community,
the state, and the nation. A sizeable united voice cannot be ignored. Pointers
for those interested in systemic advocacy include:
Getting involved in efforts that impact the entire ASD community.
Being publicly supportive of programs and services that may help
any person affected by ASD, even if it does not affect each family
directly.
100 101
Respecting each individual’s level of commitment to advocacy
however small or large it may be.
Giving rst priority to being the best advocate possible for
children, families, and adults.
Individuals with ASD are entitled to rights and services. Although the
statement sounds simple and straightforward, many parents and family
members know it can get complicated and be frustrating when trying to
work with a system that does not understand a family member’s needs. It
is imperative that people with experience in ASD issues speak up as every
person’s experience will be unique. Often times people with a personal
agenda urge law makers to make decisions that are not appropriate for
the ASD community, such as mandating one specic type of intervention
be used with all children with ASD. When there are various opinions and
perspectives, the discussion will be rich and hopefully productive. Varied
personal experiences will reect the depth of the topics and a variety of
solutions.
Advising a locally elected ofcial on personal views is encouraged and a large
part of the democratic process. Citizen participation provides representatives
with the information they need from voters on what is important, and what
is not working. This process is how decisions are made and answers are
found for proposed policies, budgets, and legislation.
Various Ways to Advocate: Home, School, and
Community
Join an advocacy organization.
Advocate for a family member.
Advocate for other children.
Call, write, email and legislators.
Vote every election.
Call a radio station to explain a position on a particular topic.
Write a letter to the editor of the local paper.
Hold a town meeting to discuss issues of interest.
Attend a school board meeting to discuss concerns.
Attend local and state social services board meetings to discuss
issues.
Join local or state committees that address what you are trying to
accomplish.
Visit a senator or state representative.
Attend a rally at the State Capitol to raise awareness of ASD.
Tips for Talking with Leaders
Always be respectful, courteous and professional.
Thank leaders for the work on ASD issues.
Be educated on the issues and differing perspectives.
Write out and take along a well-thought-out agenda of discussion
points and stick to it.
Be brief and to the point.
Ask for reasonable objectives.
Refrain from being negative.
Get to know contacts on their staff.
Write letters thanking the staff and representatives for time and
efforts.
Offer to serve as the “autism expert.”
Grassroots Advocacy
“Grassroots” advocacy refers to people working together to write letters,
place calls, send emails, and visit ofcials to communicate ideas and
opinions to government ofcials. Most of the time, efforts are concentrated
to senators, representatives, and agency personnel. As a constituent, every
person has the right to express knowledgeable opinions and advise elected
ofcials about the issues of concern.
In Washington State, the only group that actually has a government
relations person dedicated to advocacy is Autism Speaks. Through the
process of monitoring; insurance coverage for ASD interventions, laws
passed in other states, and specic needs of citizens in Washington, Autism
Speaks helps citizens create and inuence state policies. More information
can be found at www.waautisminsurance.org or Autism Votes at http://
www.autismapeaks.org/advocacy
It is advised that people start small, perhaps with issues concerning a child
or family member. This could be working with a child’s teacher, school district
and/or even school board on issues that arise regarding the educational
progress or talking about residential group homes.
Awareness Campaigns
An awareness campaign is slightly different from advocacy work as it is
geared toward educating a particular group of people or the general public.
A good example of an awareness campaign is the annual April Autism
Awareness Month promoted by Autism Speaks, the Autism Society of
102 103
America (ASA), and the Autism Society of Washington (ASW). Each ASA
chapter is encouraged to hold events, obtain proclamations, and distribute
literature to the local community to inform them of the issues related to
autism.
Local organizations often plan public events like runs or walks, community
festivals, or open houses to help community members learn about autism
and raise money for research or special projects. If interested in planning a
local event, talk with other parents and family members to get their support.
Also, contact a state organization like the ASW as they can link a person
up with national organizations that may provide materials and guides for
planning and staging events.
Ways to Spread Autism Awareness
Sponsoring a community-wide campaign is a major undertaking. However,
there are many other, less time-consuming methods to spread awareness,
including the following:
Arrange to give a presentation to students at the local public
school.
Volunteer to educate local rst responders (police, reghters and
paramedics) on how to handle individuals with ASD.
Take time to educate family and relatives so they can become
advocates for a child with ASD, as well.
Write a letter to the editor of the local paper during Autism
Awareness Month to outline the severity of the problem and what
needs to be done.
Wear the autism awareness ribbon, autism awareness bracelets or
pendants every day.
Stick an autism awareness ribbon magnet or bumper sticker on all
vehicles.
Distribute informational literature from national groups like ASA
and Autism Speaks to local doctors, human service agencies,
professionals, and therapists, etc.
Hold a “candidates’ forum” and invite several candidates to meet
with families dealing with autism in their district to hear the stories
and learn about the needs.
In 2005, the Washington State Legislature created a Caring for Individuals
with Autism Taskforce to develop a report for the legislature on services for
persons with ASD in the state. The report contained 31 recommendations
for improvements in services. Many of these recommendations, such as
implementing new supports and service programs, require legislation to
bring about change in systems.
It is important for individuals to become aware of what legislation is pending,
both at the state and federal level. It is easy to learn about federal issues on
the ASA website at www.autism-society.org. Additionally, Washington state
legislation can be accessed on the Autism Society of Washington website
at www.autismsocietyofwa.org and through The Arc of Washington State
at www.arcwa.org. These websites have email “alert” systems that allow
sign ups to receive legislation notices and recommendations for how to take
action.
Additionally, it is important to have a voice heard by state and federal
legislators. Identify the current state legislators by visiting http://leg.
wa.gov. Click on “Find Your Legislator” and enter address and zip code. It is
easy to nd federal legislators through a link on the Washington Legislature
web site. Contact legislators and make them aware that a family member
is on the spectrum. Describe the challenges faced by individuals with ASD
and their families in Washington and the barriers encountered in getting
needed services. Remember to always be constructive and considerate. The
legislators represent you – and they want to hear from you!
Families and professionals should be provided with opportunities
to access information about ASD, education, transition, funding,
agencies serving older individuals and adults, recreation options,
respite, community activities, etc. Families should receive training
to access and utilize these services/resources throughout the
individual’s passage through school to a job and adult life.
Families should be given support to navigate the bureaucracies
of education, medicine and other social services. Options could
include a service coordinator, case manager, written lists of
resources, referrals to local ASD groups, etc.
Prior to the age of eighteen, the individual’s rights as an adult should be
explained to both the individual and parent. The individuals’ rights at the age
of majority (eighteen years of age) need to be considered and addressed.
Issues related to the need for guardianship may be discussed and facilitated
by the professional team.
Families should be informed of their legal status throughout their child’s
life. This includes the parents’ rights related to the IEP process, as well
as the changes that take place at the child’s eighteenth birthday (unless
guardianship is obtained through the courts).
104 105
Appendix
106 107
1. Child Find Information
Child Find is the name of a continuous process of public awareness activities,
screening and evaluation designed to locate, identify, and refer as early
as possible all young children with suspected disabilities and their families
who are in need of Early Intervention Program (Part C) or Preschool Special
Education (Part B/619) services of the federal Individuals with Disabilities
Education Act (IDEA).
In Washington State, the Child Find requirements for children birth to age
three are coordinated through a statewide Child Find system, which includes
the Department of Early Learning (DEL), the Department of Health (DOH),
the Department of Services for the Blind (DSB), the Department of Social
and Health Services (DSHS), Health Care Authority (HCA), and Ofce of the
Superintendent of Public Instruction (OSPI). Child Find Activities for three
through 21 are primarily under the lead agency of Ofce of Superintendent
of Public Instruction (OSPI).
Early Intervention Program (Part C)
The Governor of Washington designated the Department of Early Learning
(DEL) as the lead agency, with the primary responsibility for planning and
implementing IDEA, Part C in Washington State. IDEA, Part C funds are used
to enhance early intervention services for children, ages birth to three years,
and their families, who meet Washington State’s eligibility criteria. The
federal legislation allows Washington State to request federal funds to:
Implement a statewide, comprehensive, coordinated, interagency
program of early intervention services for infants and toddlers with
disabilities and their families;
Facilitate the coordination of payment for early intervention
services from federal, state, local and private sources, and
enhance the capacity of the state to provide early intervention
services.
As the lead agency DEL delegates program management responsibilities to
the Early Support for Infants and Toddlers (ESIT) program. ESIT manages
and implements lead agency responsibilities for DEL including management
of overall assurances, contracting, and monitoring requirements.
ESIT facilitates the development of local and state interagency agreements
and local early intervention plans. It assists contractors with implementation
of policies and procedures and supports County Interagency Coordinating
Councils (CICCs) to provide input to the State Interagency Coordinating
Council (SICC) and intra/interagency working committees. ESIT develops
108 109
training around Part C implementation and conducts ongoing monitoring of
program operations, as necessary according to contractual need, and federal
and state statutes.
Washington Administrative Code (WAC) 392-172A-02040
(1)School districts shall conduct child nd activities calculated to reach all
students with a suspected disability for the purpose of locating, evaluating
and identifying students who are in need of special education and related
services, regardless of the severity of their disability. The child nd
activities shall extend to students residing in the district whether or not they
are enrolled in the public school system; except that students attending
private elementary or secondary schools located within the district shall be
located, identied and evaluated consistent with WAC 392-172A-04005.
School districts will conduct any required child nd activities for infants and
toddlers, consistent with the child nd requirements of the lead agency for
Part C of the act.
(2)Child nd activities must be calculated to reach students who are
homeless, wards of the state, highly mobile students with disabilities, such
as homeless and migrant students and students who are suspected of being
a student with a disability and in need of special education, even though
they are advancing from grade to grade.
(3)The school district shall have policies and procedures in effect that
describe the methods it uses to conduct child nd activities in accordance
with subsections (1) and (2) of this section. Methods used may include but
are not limited to activities such as:
(a)Providing written notication to all parents of students in the district’s
jurisdiction regarding access to and the use of its child nd system;
(b)Posting notices in school buildings, other public agency ofces, medical
facilities, and other public areas, describing the availability of child ind;
(c)Offering preschool developmental screenings;
(d)Conducting local media informational campaigns;
(e)Coordinating distribution of information with other child nd programs
within public and private agencies;
(f)Using internal district child nd methods such as screening, reviewing
district-wide test results, providing in-service education to staff, and other
methods developed by the school district to identify, locate and evaluate
students including a systematic, intervention based, process within general
education for determining the need for special education referral.
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2. Washington’s System of Services
for Children Ages Birth to Three with
(or suspected of having) a diagnosis
of Autism Spectrum Disorder
Early intervention services during the rst years can make a signicant
difference in a child’s life. In Washington State the early intervention
program is referred to as the Early Support for Infants and Toddlers
Program (ESIT) and is associated with a federal law called The Individuals
with Disabilities Act (IDEA) Part C, Early Intervention Services.
ESIT is located within the Department of Early Learning (DEL) and works in
collaboration with the Ofce of Superintendent of Public Instruction (OSPI),
the Department of Health (DOH), Department of Social and Health Services
(DSHS), the Department of Services for the Blind (DSB), and Health Care
Authority (HCA) to maintain a statewide system of early intervention
services for children.
The ESIT system in each geographic service area is directed by a Local Lead
Agency under the authority of DEL-ESIT Contracts. The Local Lead Agency
collaborates with schools, non-prot agencies, and private providers to
provide early intervention services. Each geographic service area, through
coordination by the ESIT Local Lead Agency, must maintain a County
Interagency Coordinating Council to assure coordinated, collaborative, and
comprehensive services.
When a family has concerns about their child’s development, they can
request a developmental evaluation through their geographic service area’s
Local Lead Agency. ESIT ensures that a Family Resources Coordinator
(FRC) facilitates the evaluation process. When a child is identied with a
developmental delay (or has a medical diagnosis with a high probability
of developmental delay), an Individualized Family Service Plan (IFSP)
is developed with a team that includes the family, the FRC, and service
providers. The IFSP includes outcomes, specialized services needed to meet
the outcomes, and funding sources for those services. The FRC continues
working with the family to connect them to other community resources as
needed.
112 113
The Guiding Concepts for Early Support for Infants and Toddlers
(ESIT) are as follows:
Early Support for Infants and Toddlers Mission
The purpose of the Early Support for Infants and Toddlers program is to build
upon family strengths by providing coordination, supports, resources, and
services to enhance the development of children with developmental delays
and disabilities through everyday learning opportunities.
Early Support for Infants and Toddlers Principles
1. Families are equal partners who bring to the team skills, experience and
knowledge about their child; and, are the nal decision makers as to what
will work best for their family.
2. Early intervention recognizes that family relationships are the central
focus in the life of an infant or toddler.
3. Infants and toddlers learn best through everyday experiences and
interactions with familiar people in familiar settings.
4. The early intervention process, from initial contact to transition, must
be responsive, exible and individualized to reect the child’s and family’s
priorities, learning styles, and cultural beliefs.
5. All families, with the necessary supports and resources, can enhance their
children’s learning and development.
6. The role of the service provider is to work in a team to support
Individualized Family Service Plan functional outcomes, based on child and
family needs and priorities.
7. Early intervention practices must be based on the best available current
evidence and research.
Early Support for Infants and Toddlers Outcomes
To enable families to care for their child and participate in family and
community activities, families will:
• Know their rights.
• Effectively communicate their child’s needs.
• Help their child develop and learn.
To help children be active and successful participants across a variety of
settings and situations, children will demonstrate improved:
• Positive social-emotional skills and social relationships.
• Acquisition and use of knowledge and skills including language and
communication.
• Use of appropriate behaviors to meet their needs.
The ESIT program has a comprehensive web site located at www.del.wa.gov/
development/esit/
ESIT and the Haring Center for Applied Research and Training in Education,
University of Washington, developed Guidelines for Providing IDEA, Part
C Services for Toddlers With, at Risk for, or Who Are Suspected to Have
Autism Spectrum Disorder (ASD) in Washington State www.del.wa.gov/
publications/esit/docs/ESIT_Autism_Guidelines.pdf
114 115
3. Special Education - Three Through
Five
In accordance with state law, the Ofce of Superintendent of Public
Instruction is responsible for making available educational services to
preschool children with disabilities ages three to age 21. Once it has been
determined that the child has a suspected disability, the school district is
responsible for completing an evaluation. Information collected through
interview, observations, criterion-referenced/curriculum based and
standardized assessments are reviewed and summarized to determine if the
child is eligible for specially designed instruction and related services.
A team of individuals, including the child’s parents, meet to review the
results of the evaluation and develop an Individualized Education Program
(IEP) for the child. The IEP includes, but is not limited to, a statement of
present levels of performance, goals, objectives, evaluation criteria for each
objective, special education services for each goal and the least restrictive
setting in which services will be delivered.
In accordance with the IEP, service delivery options may include itinerant
services and/or a special education center-based program. Itinerant services
may be delivered in the home or to a child attending a public preschool,
kindergarten, community-based preschool or child-care program.
A center-based special education program, located in an integrated setting
or a separate facility, may be part-time or full-time. Each preschool
education program provides an appropriate curriculum, which includes
parent involvement and addresses developmental domains: adaptive,
aesthetic, cognitive, communication, sensorimotor and social-emotional.
With parent permission, a child is provided the services outlined on the IEP.
Children ages birth through ve with characteristics associated with Autism
Spectrum Disorder (ASD) may be found eligible for services without a formal
diagnosis of ASD. Whether or not a child has been diagnosed with ASD, an
IFSP or IEP will be developed that addresses the child’s and family’s needs.
For a more detailed look at Education and Autism in Washington State refer
to the publication The Education Aspects of Autism Spectrum Disorders,
2003 available at http://www.k12.wa.us/SpecialEd/pubdocs/Autism%20
Manual.pdf This publication is scheduled for an update of information in
August, 2008.
116 117
4. Least Restrictive Environment and
Natural Environment
Least Restrictive Environment (LRE)
Least Restrictive Environment (LRE) is the legislative terminology which is
central to the Individuals with Disabilities Education Act (IDEA, 2004). The
LRE concept has two parts:
1. Mandates that schools must educate individuals with disabilities “to the
maximum extent appropriate in the general education environment with
students who are nondisabled”.
2. States, “special classes, separate schooling, or other removal of students
eligible for special education from the general educational environment
occurs only if the nature or severity of the disability is such that education
in general education classes with the use of supplementary aide and
services cannot be achieved satisfactorily.” Implicit in this statement is
that children with disabilities be provided with an appropriate education.
This is dened as an educational experience that allows the child to
benet from instruction.
The LRE is determined at least annually by the IEP team and is based on the
child’s unique service needs. Placement decisions should not be permanent
or be based on administrative convenience. According to IDEA, no child can
be excluded from any classroom solely because of needed modications
in the general curriculum. Likewise, in selecting the least restrictive
environment, not every child with an IEP should automatically be placed
in a “full inclusion” setting. Consideration should be given to the quality of
services. These guidelines are consistent with the current denitions and
legal mandates for best practices in working with children with disabilities.
Natural Environment (NE)
IDEA, Part C requires states to ensure that early intervention services
to infants and toddlers under 3 years of age are provided in natural
environments, which are settings that are natural or typical for a same-
aged infant or toddler without a disability. These settings include, but are
not limited to, the child’s home and community settings such as child care
centers, libraries, playgrounds, Head Start classrooms, and integrated
center-based programs.
Services may be provided elsewhere if the early intervention outcome
identied on the Individualized Family Service Plan (IFSP) cannot be
achieved satisfactorily in a natural environment. For some children with (or
suspected of having) Autism Spectrum Disorder, more intensive services
118 119
in a setting other than a natural environment, with a plan to integrate
services into their natural learning settings, may be appropriate. If an early
intervention service is not provided in a natural environment, a justication
must be provided on the IFSP.
Providing services in natural environments supports the key principles
of early intervention services: to enhance the capacity of the family in
facilitating their child’s development through natural learning opportunities
at home or in community settings where children live, learn, and play. By
using activities (such as bath time, mealtime, story time, or playing) that
occur in natural settings, opportunities are provided for the child to learn and
practice new skills in the settings in which they will be used.
Service providers should enhance any caregiver’s capacity to facilitate
a child’s development by working with the adult and child within natural
learning opportunities.
Washington State’s Early Support for Infants and Toddlers’ Practice Guide:
Natural Environments and Justication for Services Provided Outside of
the Natural Environment provides guidance to all individuals who comprise
the state early intervention system in adapting and modifying services as
necessary to meet the natural environment requirements of the IDEA, Part
C. www.del.wa.gov/publications/esit/docs/NaturalEnvironmentsNewRegs.
pdf.
5. Inclusion
Inclusion is dened as providing specially designed instruction and supports
for individuals with special needs on an IEP in the context of regular settings.
Inclusion reects a philosophy of acceptance, belonging and community.
Inclusion does not simply happen when individuals are placed together in
typical situations.
Inclusion education means that all individuals in a school, regardless of their
strengths or challenges in any area, become part of the school community. It
is part of a continuum of the Least Restrictive Environment (LRE) as dened
by IDEA and its amendments. Individuals with ASD are included in the
feeling of belonging among other individuals, teachers, and support staff.
This is accomplished through educational strategies designed for a diverse
individual population and collaboration between educators so that specially
designed instruction and supplementary aids and services are provided to all
individuals as needed for effective learning.
For individuals with disabilities, inclusion accomplishes the following:
Affords a sense of belonging to the family
Provides a stimulating environment in which to grow and learn
Enhances the feeling of being a member of the community
Develops friendships
Enhances self-respect
Afrms individuality
Provides peer models
Provides opportunities to be educated with same-age peers
120 121
6. Functional Behavioral Assessment
The goal of a functional behavior assessment (FBA) is to identify those
environmental factors that inuence the display of appropriate and
challenging behaviors. FBA can also identify the purpose or reinforcers that
maintain behaviors by using systematic methods and empirical procedures.
The information gleaned from this process is used to develop an effective
intervention plan to increase the frequency of more desirable behaviors and
decrease the frequency of undesirable behaviors.
When a functional behavioral assessment is necessary in school, the IEP
team must take part in completion of the assessment. One member of
the team must be a professional, trained and experienced in FBA and the
development, implementation, and evaluation of behavior intervention plans.
The FBA typically involves interviews with service providers or others
knowledgeable about the individual, completion of forms and checklists, and
observing the individual in his or her natural environment. This information
helps the team develop hypotheses as to the function(s) of the behavior
of concern and the role of environmental factors that are inuencing the
behavior.
[Note: A more specialized and objective procedure can also be used.
A functional behavioral analysis is the systematic manipulation of
environmental antecedent variables and consequences to directly test
hypotheses and establish a causal relationship between a behavior and
factors that initiate, inuence and maintain the behavior.]
The following problem-solving model was drawn largely from the Ohio
Model Policies and Procedures for the Education of Children With Disabilities
(2000), Appendix F: Technical Assistance for Implementation of the Behavior
Intervention. It can be used to develop and evaluate the appropriateness of
a behavior intervention plan.
Step 1: Discuss the vision or future planning for the individual
• What is the long-term vision for the individual?
• What are the behavior barriers interfering with reaching or progressing
toward the vision?
Step 2: Discuss present levels of performance
• What strengths does the individual have?
• Where is the behavior most or least likely to occur?
122 123
• How often does the behavior occur?
• How long does the behavior (event) last?
• How long a period of time typically exists between a request and when
the individual begins to respond?
• How extreme is the behavior?
• For each occurrence, with whom is the behavior most/least likely to
occur?
• What is the general response of others to the behavior?
• How does the individual react to others’ responses?
Step 3: Write a statement clearly describing the behavior of concern,
taking into account information obtained in Step 2
Step 4: Collect additional data to fully and completely understand
the nature and cause of the behavior of concern
• What usually happens in the individual’s environment, instruction, and
relationships just before and just after the behavior of concern occurs?
• What other information is relevant to the behavior of concern
(e.g., medication, medical condition, sleep pattern, diet, schedule,
relationships)?
• How does the individual typically communicate wants and needs?
• What is the individual’s behavior history?
• What interventions and modications have been found to be successful
and unsuccessful with regard to the behavior of concern?
• What are the academic, curricular, self-care, and social skills that make
up the individual’s prole?
• For what purpose(s) does the individual use the behavior of concern (e.g.,
power, control, avoidance/escape, attention)?
• What is the individual trying to communicate with the behavior?
Step 5: Identify and prioritize the needs of the individual for the IEP
(or for the behavior plan if the individual does not have an IEP) by
considering the following:
• Which behaviors are likely to cause harm to the individual or others?
• Which behaviors impede the learning of the individual or others?
• Which behaviors occur most frequently?
• Which behaviors are most intense?
• Which behaviors, when effectively addressed, will have a positive impact
on other behaviors of concern?
Step 6: Identify measurable goals, objectives, and assessment
procedures
• What behavior could replace and serve as a more acceptable alternative
to the behavior of concern?
• Does the replacement behavior serve the same function to the individual
as the behavior of concern?
• Will mastery of the goals/objectives enable the individual to more fully
participate in the general education curriculum?
• Have positive intervention strategies been demonstrated to be ineffective
prior to the proposed use of more restrictive intervention procedures?
• Are the goals/objectives stated in terms that the individual understands?
• Do the goals/objectives help build condence and competence,
promote independence and self-advocacy, and help develop personal
responsibility?
• Were cultural differences taken into account when the goals/objectives
were developed?
• Can the goals/objectives in the behavior plan be generalized to other
settings?
124 125
Step 7: Identify measurable goals, objectives, and assessment
procedures
• Have criteria been established for each goal/objective for measuring
success in relationship to baseline data?
• What methods will be used to evaluate whether there is an increase in
the use of replacement behavior and decreased use of the behavior of
concern?
• Has the IEP team considered how frequently it will evaluate progress
based on the frequency, intensity, and severity of the behavior of
concern?
Step 8: Identify needed services
• What environmental changes need to be considered?
• What accommodations, intervention techniques, and supports are needed
for the individual to learn and use the replacement behavior?
• Do the interventions rely on logical consequences instead of
punishments?
• If necessary, have several interventions been designed to meet the
diverse and unique needs of the individual?
• Does research support using the selected interventions with the behavior
of concern?
• How will stakeholders (including family members) be trained and
supported in implementing the behavior intervention plan?
• Can the plan be held up to ethical standards?
Step 9: Determine the least restrictive environment
• Are the replacement behaviors outlined in the intervention plan
appropriate for the environments in which the plan will be implemented?
• If the IEP team has determined that the individual will be removed,
have strategies been included in the behavior intervention plan for re-
introducing the individual to the regular educational environment?
• Has the IEP team considered interventions that will increase the likelihood
that the individual educational environment? will be educated with non-
disabled peers?
• Have interventions been tried and documented prior to placement in a
more restrictive environment?
Step 10: Periodically evaluate outcomes, taking into account the
following questions:
• Was the plan effective in increasing the use of the replacement behavior
and decreasing the behavior of concern?
• Were the interventions appropriately applied and documented?
• Is the behavior intervention plan being implemented as designed?
• Were adjustments made as needed during the implementation phase of
the plan?
• Were parents, staff, the individual, and outside agencies involved in the
review and revision of the behavior intervention plan?
• Has the intervention plan been implemented for a sufcient length of
time?
• Has the intervention plan been continued, revised, or eliminated as a
result of the periodic review?
126 127
7. Instructional Accommodations and
Modications
The purpose of accommodations and modications are to facilitate the
individual’s full participation in the general education curriculum. These may
range from minor accommodations to major instructional modications.
Critical information about the individual’s learning style, academic abilities,
and sensory motor skills will guide the use of the following.
A. Time
Change the amount of time allowed for learning, testing and task
completion. This includes time for breaks during the task or activity.
Examples:
Take home class work to nish.
Give more time to complete part or all of a test.
Remove the “timed” portion of an activity.
Allow quick “stretch breaks” during an activity.
Build in planned breaks with no requirement for completion at that
time, in order to prevent individuals from spending too much time
on an activity, becoming frustrated and inattentive.
B. Size/Amount
Change the required amount of items that the individual is expected to
complete.
Examples:
Cut the worksheet in half.
Place a “stop sign,” red line, or some other indicator on the sheet
to indicate that the individual is done at that point.
Allow the individual to choose “X” amount of problems/items to
complete from the larger amount.
Allow the individual to decide if he should complete 5, 6 or 7 items
of the 10 items (building in choice).
Start a new concept by completing only one or two items, the next
time three, then four, etc., as the individual’s condence and skill
improves.
128 129
Allow the individual to do more items than required if it is an area
that he enjoys. Give extra credit for those items to help balance a
time when he is not as successful with an activity.
C. Participation
Adapt the extent to which an individual may be involved in the task or
activity by allowing the individual to use his strengths and interests.
Examples:
The individual may type the answers that his group tells him to
type.
The individual may glue the pictures on the page that have been
placed in the correct order, while other individuals are deciding
order.
The individual may hold the map while others point to various
locations.
The individual may pass out the reading books to each classmate
and choose who will read while others do the actual reading.
The individual holds the “strands of DNA” (string) while the other
individual decides in what order the “molecules” (gumdrops) are
placed.
The individual listens in reading group while others read.
The individual that has difculty with auditory comprehension
reads while others listen and is then excused to complete a hands-
on task.
A vocational activity may include a variety of individuals with
different strengths. In one shopping activity there may be an
opportunity for the individual to:
a. Write the list.
b. Decide what to put on the list.
c. Decide the approximate amount of money needed and to count out that
amount.
d. Give directions to the store.
e. Read the list.
f. Cross off the items as collected.
g. Push the cart.
h. Decide which line is shortest/fastest at the checkout.
i. Greet store employees who are familiar.
j. Count out the necessary money.
k. Bag groceries.
l. Carry the bags.
m. Count to be sure everyone is accounted for when time to go.
D. Input
Provide a variety of ways that instruction is delivered to the individual to
maximize the individual’s learning style/strength.
Examples:
Use an overhead projector to note the main facts or important
concepts that the individual is to remember.
Use an amplication system to improve the individual’s ability to
understand and attend to the verbal instruction.
Allow for small group activities that support the general concepts
being taught. In this case, the focus is on the information
generated to the group vs. an end product. For example, the
individuals may work in a small group and discuss specic
examples of dairy, meat, vegetables, fruits, etc. from their daily
meals.
Provide a “designated note taker” or Xerox copy of other
individuals or teacher’s notes.
Provide a printed outline with videotapes and lmstrips.
Provide a print copy of assignments or directions which are
written on the blackboard for the individual that cannot easily shift
attention from board to paper.
E. Output
Modify the way an individual is required to respond to instruction or show
knowledge of instructional material.
Examples:
Allow for ll-in-blank answers for the individual who has difculty
with handwritten assignments.
Allow the individual to use a keyboard, computer, or label-maker
instead of handwriting on assignments.
Allow the individual to respond verbally instead of on paper.
Allow the individual who has difculty working in groups to
“instant message” with teacher or individuals to decrease anxiety.
Allow the individual to build models or other hands-on activities to
show knowledge instead of written or oral reports.
130 131
F. Difculty
Adapt the skill level required, the type of problem presented, or how the
individual may approach learning the required materials.
Examples:
Allow the individual to have “open-book test.”
Allow the individual to use a calculator.
Provide the individual with the correct numbers and functions to
use with a story problem.
Break problems or tasks into smaller, more easily understood
steps. For example,
• Provide the individual with a visual list of items that are necessary
in order to accomplish an academic task (calculator, pencil, paper,
book, and ruler), rather than just a direction to “get ready for
math”.
• Instead of presenting a large number of food items and directing
the individual to categorize items as fruit, vegetable, dairy or
meat; ask the individual to locate one category of items at a time,
providing a picture, if necessary, or simply ask the individual to
match the food item to the name.
G. Level of Support
Increase the amount of personal assistance that the individual receives.
Examples:
Allow for a peer to assist in completing tasks or understanding
materials.
Provide educational assistant to explain tasks, modify the
materials, provide environmental supports or modify the
environment.
Provide additional tutoring outside of the specic educational
instruction to assist in understanding the material or formulating
responses.
H. Modied Curriculum
Provide different instruction, materials and goals for an individual.
Examples:
An individual may learn computer/keyboarding while others take a
language test or work on a language activity.
An individual may cut out items from a magazine and create a
picture book of healthy foods while other individuals are writing a
creative story.
An individual may have work experience in a local record store
while others are taking algebra or calculus classes in the school.
An individual may create his personal schedule for the day while
others are participating in “calendar and weather” during the class
group activity.
An individual may take a morning walk as part of a “sensory diet”
while others are reviewing the homework assignment and making
corrections.
132 133
8. Education Best Practice Guideline
Checklist
The following guidelines can be used by both parents and educators to
address the unique needs of students with autism. This list is not intended to
be included in every plan for every child. It is intended to be a starting point
for discussion by the planning team when designing an individualized plan.
Student Planning Goal/Objective
Now Not
Now
1: Extended Educational Programming
Extended Day and Extended School Year. (NOTE –
these are distinct and need to be clearly dened.)
1. Duration and programming to be based on
individual needs.
2. Extended day should to be different from In-Home
Training.
3. Determine eligibility criteria based not solely on
likely regression, but also on a needs assessment
of the following areas: behavior, social skills,
communication, academics, and self help skills.
4. Should be available to all eligible students; not to
be determined by district availability funds/staff.
5. To include variety of structural programs/settings.
6. Services should be linked to IEP objectives and
goals.
Student Planning Goal/Objective
Now Not
Now
2: Daily Schedules Reecting Minimal Unstructured
Time
Individualized daily schedule reecting minimal
unstructured time and active engagement
in learning activities to the maximum extent
possible.
1. Flexibility within routines to adapt to individual
skill level.
2. Learning activities should be based on IEP goals
and objectives and related educational activities.
3. Engagement time may include lunch, snack, and
recess.
4. Consideration should be given to aiding students
with changes in routine schedules such as, eld
trips, substitute teachers, and pep rallies.
134 135
Student Planning Goal/Objective
Now Not
Now
3: In-Home and Community-Based Training
Include training and IEP goals and objectives to
assist in acquisition and generalization to the
home and community setting (appropriate social
interaction skills including social and behavioral
skills) based on needs assessment. (NOTE-Dene
In-Home and Community-Based training.)
1. Strategies to facilitate maintenance and
generalization (home to school, home to
community, school to home, school to
community).
2. Consideration should be given to guidelines for
the qualications of the In-Home trainer.
Student Planning Goal/Objective
Now Not
Now
4: Positive Behavior Support Strategies
Positive Behavior Supports include Functional
Behavior Assessment, antecedent manipulation,
teaching replacement behaviors, reinforcement
strategies, data based decisions.
Behavior Intervention Plan developed and maintained
based on a Functional Behavioral Assessment
using current data collection of target behaviors.
1. Considerations and guidelines should be written
for the person who is performing the functional
behavior assessment (FBA).
2. Behavioral programming is structured across
school, home and community-based settings.
Student Planning Goal/Objective
Now Not
Now
5: Futures Planning for Integrated Living, Work,
Community and Educational Environments
Considered for all students with ASD, at any age
1. Consider skills necessary to function in all
environments post graduation.
2. Consider skills necessary to function in all
environments 3 years hence.
3. Consider skills necessary to function in all
environments for current year.
Student Planning Goal/Objective
Now Not
Now
6: Parent/Family Education, Training, and Support
Parent/family education, training, and support are
designed to provide the parent/family with skills/
techniques needed in order to help their child
become successful in the home/community
setting.
Parent training is provided by qualied personnel
with experience in autism and may include but
is not limited to information regarding parent
support groups, workshops, videos, conferences,
direct consultation, materials, separate and
distinct from in-home training to increase the
parent’s knowledge of specic teaching and
management techniques, curriculum information,
provide information related to the child’s disability
and available resources, and facilitate parental
carryover of in-home training.
Strategies can include behavior management,
setting a structured home environment, or
communication training. Parents are active
participants in promoting the continuity of
intervention across all settings based on IEP.
Student Planning Goal/Objective
Now Not
Now
7: Staff-to-Student ratio
Staff-to-student ratio appropriate to identied
activities and as needed to achieve progress on
social, behavioral, and/or academic IEP goals and
objectives. The team may determine ratios based
on the following considerations:
1. Level of learning (acquisition, uency,
maintenance, generalization).
2. Priority given to work towards individual
independence by fading dependence on 1:1
ratios.
3. Developmental level of the student (in the case
of young children [developmental level 0-8 years]
no more than 2 children with autism spectrum
disorder per adult as determined by results of
adaptive behavior evaluations).
4. Behavior needs.
5. Accommodations across all settings.
6. Transitions within the school day.
7. Teaching activities.
136 137
Student Planning Goal/Objective
Now Not
Now
8:Teaching Strategies
Teaching strategies shall be based on peer reviewed
and empirically validated evidence-based
practices/methodologies for students with autism.
At this time the science heavily favors, but is not
limited to those based on the science of applied
behavior analysis, dened as the application of
behavioral principles for the benet of the learner
and includes simultaneous evaluation of the effect
of these applications.
The following instructional strategies should be
considered:
Discrete-trial training.
Visual supports.
Structured learning.
Augmentative and Alternative Communication.
Social skills training.
Implementation of the instructional strategies should
be reected in the IEP. The following will be
considered:
How will this strategy be implemented?
When and by whom?
Student Planning Goal/Objective
Now Not
Now
9: Communication
Communication intervention, which considers
language forms and functions that enhance
effective performance across settings. Strategies
may include, but are not limited to:
Augmentative and Alternative Communication.
Milieu, incidental, or naturalistic teaching.
Verbal Behavior.
Pragmatics.
Conversation skills.
Student Planning Goal/Objective
Now Not
Now
10: Social Skills Support
Consideration will be given to the following areas:
1. Appropriate social skills assessment and
curriculum.
2. Instruction provided by highly qualied service
providers.
3. Use of trained peer facilitators such as, but not
limited to, circle of friends.
4. Strategies may include but are not limited to
video modeling, Scripts training, social stories,
and role playing.
5. Support to be provided across all settings.
Student Planning Goal/Objective
Now Not
Now
11: Professional Educator/Staff Support
Professional development will be provided for all
personnel who work with the student to assure
the correct implementation of the techniques and
strategies as determined by the IEP.
This checklist was developed through the work of the Texas Autism Rule
Study Committee, a committee comprised of parents, Autism providers
(Board Certied Behavior Analysts), school principals, and Texas education
agency representatives. It was shared through the efforts and courtesy of
the committee and Arzu Forough (2007).
138 139
9. Implications for the Education
System
The goal of our special education system for people with disabilities,
including those with the most severe disabilities, should be to offer them
the greatest potential to be fully employed in the community, working forty
hours/week with benets, at a wage level per hour that allows them to live
a high quality life (above the poverty level) and reach for their full potential.
This will take a different approach and signicant partnering between the
medical, school and adult service delivery communities.
In order for the employment situation to improve in Washington, people with
ASD must be better identied and the school to work transition approach
individualized.
Implications
Due to education’s primary role in the lives of children with autism, the
following points are critical:
a. Improved timelines of identication services at an early age of individuals
with ASD in Washington.
b. The employment focus starts at the earliest stages of special education
and have that be reected by the development of vocational skills and an
employment outcome emphasis.
c. Ensure that parent, guardian, care givers, educators-administrators,
and adult service provider agencies have ongoing training in the process of
vocational transition from school to work.
d. Schools, Vocational Rehabilitation agencies, and Social Security
Administration should collaborate to assist families in the understanding and
utilization of work incentives such as, but not limited to, Plan to Achieve
Self-Support(PASS)/Impairment Related Work Expenses (IRWE)/Individual
Earned Income Exclusion.
e. Recognize that successful ongoing retention of a job in the community
particularly for people with ASD, will require ongoing supports, not the
typical “time limited” ones.
f. Realize that the school to work transition planning process time for people
with ASD is intensive and intentional.
140 141
g. The school to work transition planning process should begin, by law, no
later than age sixteen. With that said, it would be advantageous to begin the
process before age 16 (IDEA, 2004). It should encompass a job goal working
back with objectives each year until the present time (backward planning).
This should include situational assessments and active work experiences
with needed supports. This process should lead toward paid work at the end
of the school years when the entitlement to supports ends.
h. Special education programs should be evaluated on the effectiveness of
individual post school employment outcomes in terms of:
Hours worked per week in the community (not sheltered setting).
Average hourly earnings.
Monthly earnings versus the SGA (Substantial Gainful Activity
level).
The retention time of the job.
The ability to get benets as well as earnings to reduce
government dependency.
Their ability to integrate choices of the person with disabilities into
the employment outcome.
The number of individuals who are actually employed upon
graduation.
The level of nancial/social/residential independence e.g., full
integration into the community with needed supports.
i. Schools collaborate with partners in this process including adult services
agencies who will engage in the “hand off” process as well as government
and funding agencies who will provide scal or resource supports.
j. Ensure the IEP team concept is comprehensive to include these other
groups at appropriate times.
k. Recognize that individuals with ASD will require particular help with, but
not limited to:
Behavior support and self regulation of behavior.
Socialization skills.
Communication skills.
Ongoing supports to reect the individual needs.
10. Choosing Treatment Options
Questions for Parents or Caregivers to Ask Regarding Specic Treatments
and or Programs:
What characteristic behaviors of ASD am I trying to target? Does
the treatment that I am considering target these characteristic
behaviors?
Are there any harmful side effects associated with this treatment?
What positive effects of treatment would I hope to see?
What are the short-term and long-term effects?
Can this treatment be integrated into my child’s current program?
What is the cost of treatment?
Will my insurance company pay for the treatment?
How much time does the treatment take? Can I realistically devote
the time required to the treatment?
Has this treatment been validated scientically?
Have I researched the treatment?
Was I able to interview other parents and professionals about the
treatment? If so, list stated pros, cons, and other areas of interest.
Do proponents of the treatment claim that this procedure can help
nearly everyone? If so, this should be seen as a “red ag” to slow
down and be more careful in consideration of this technique.
What do my pediatrician and other professionals involved with my
child think about the treatment’s appropriateness?
Points for Parents or Caregivers to Ponder when Considering Participation in
a New Intervention and or Program:
Does the program or therapy and anticipated outcomes meet the
unique strengths, challenges, or goals for my child? What are the
anticipated outcomes of this intervention? What positive changes
can I expect to see in my child’s behavior, communication, eating,
sleeping, learning, etc.? Do these outcomes address what I see as
the unique strengths, challenges or goals for my child? Do these
outcomes match my expectation or goals for my child? Are there
any potentially negative outcomes of the intervention?
How will these goals or outcomes be evaluated? How will I know
if my child is making progress toward desired outcomes? What
method will be used to evaluate child progress? How often will
we evaluate child progress? Who will conduct the evaluation?
142 143
How long will we continue until a change can be made in the
intervention?
What are the potential risks? Will my child face an immediate
risk? Are there any risks for other family members? Are there any
activities, foods, etc. that will be restricted?
What is the back-up plan if we choose to discontinue this
intervention? Is there any risk of discontinuing the intervention?
What kind of early intervention services will my child receive if we
decide to stop the intervention?
Is there a good t between the intervention and our family life?
Can we do what will be asked of us?
Have I received information about this from a variety of sources?
Is this intervention published in peer-reviewed journals?
Are there alternatives that are: less restrictive? better researched?
How will these new interventions be combined with strategies and
therapies that we are already using with my child?
11. American Academy of Pediatrics
In late 2007, Doctors Chris Johnson and Scott Myers from the Council on
Children with Disabilities authored two autism clinical reports detailing
information on autism and care management facts for pediatricians and care
providers. Due to the size of the documents (approximately 75 referenced
pages) only the abstracts of the studies are presented.
Identication and Evaluation of Children With Autism
Spectrum Disorder
Clinical Report Abstract
Autism spectrum disorders are not rare; many primary care pediatricians
care for several children with autism spectrum disorders. Pediatricians
play an important role in early recognition of autism spectrum disorders,
because they usually are the rst point of contact for parents. Parents are
now much more aware of the early signs of autism spectrum disorders
because of frequent coverage in the media; if their child demonstrates any
of the published signs, they will most likely raise their concerns to their
child’s pediatrician. It is important that pediatricians be able to recognize the
signs and symptoms of autism spectrum disorders and have a strategy for
assessing them systematically.
Pediatricians also must be aware of local resources that can assist in making
a denitive diagnosis of, and in managing, autism spectrum disorders.
The pediatrician must be familiar with developmental, educational, and
community resources as well as medical subspecialty clinics. This clinical
report is 1 of 2 documents that replace the original American Academy of
Pediatrics policy statement and technical report published in 2001. This
report addresses background information, including denition, history,
epidemiology, diagnostic criteria, early signs, neuropathologic aspects, and
etiologic possibilities in autism spectrum disorders.
In addition, this report provides an algorithm to help the pediatrician develop
a strategy for early identication of children with autism spectrum disorders.
The accompanying clinical report addresses the management of children with
autism spectrum disorders and follows this report on page 1162 (available
at www.pediatrics.aappublications.org/cgi/content/120/5/1162.full). Both
clinical reports are complemented by the toolkit titled “Autism: Caring for
Children With Autism Spectrum Disorders: A Resource Toolkit for Clinicians,”
which contains screening and surveillance tools, practical forms, tables, and
parent handouts to assist the pediatrician in the identication, evaluation,
and management of autism spectrum disorders in children (Johnson, C. P.,
Myers, S. M., 2007).
144 145
The full clinical report is available from the American Academy of Pediatrics
at http://pediatrics.aapublications.org/content/120/5/1183.full
American Academy of Pediatrics Clinical Guidelines on
Autism Management of Children With Autism Spectrum
Disorders
Clinical Report Abstract
Pediatricians have an important role not only in early recognition and
evaluation of autism spectrum disorders but also in chronic management of
these disorders.
The primary goals of treatment are to maximize the child’s ultimate
functional independence and quality of life by minimizing the core autism
spectrum disorder features, facilitating development and learning, promoting
socialization, reducing maladaptive behaviors, and educating and supporting
families. To assist pediatricians in educating families and guiding them
toward empirically supported interventions for their children, this report
reviews the educational strategies and associated therapies that are the
primary treatments for children with autism spectrum disorders.
Optimization of health care is likely to have a positive effect on habilitative
progress, functional outcome, and quality of life; therefore, important
issues, such as management of associated medical problems, pharmacologic
and nonpharmacologic intervention for challenging behaviors or coexisting
mental health conditions, and use of complementary and alternative medical
treatments, are also addressed. (Johnson, C. P., Myers, S. M., 2007).
The full clinical report is available from the American Academy
of Pediatrics at http://www.aap.org/pressroom/issuekitles/
ManagementofChildrenwithASD.pdf
12. American Academy of Neurology
(AAN) and Child Neurology Society
Screening and Diagnosis of Autism
This is a summary of the American Academy of Neurology (AAN) and Child
Neurology Society (CNS) guideline on screening and diagnosis for autism.
This practice parameter reviews the available empirical evidence and gives
specic recommendations for the identication of children with autism. This
approach requires a dual process:
1. Routine developmental surveillance and screening specically for autism
to be performed on all children to rst identify those at risk for any type
of atypical development, and to identify those specically at risk for
autism; and
2. To diagnose and evaluate autism, to differentiate autism from other
developmental disorders.
Level One: Routine developmental surveillance screening specically
for autism
Good Evidence Supports
1. Developmental surveillance should be performed at all well-child visits
from infancy through school-age, and at any age thereafter if concerns are
raised about social acceptance, learning, or behavior (Level* B).
2. Recommended developmental screening tools include the Ages and Stages
Questionnaire, the BRIGANCE® Screens, the Child Development Inventories,
and the Parents’ Evaluations of Developmental Status (Level B).
3. Because of the lack of sensitivity and specicity, the Denver-II (DDST-
II) and the Revised Denver Pre-Screening Developmental Questionnaire
(R-DPDQ) are not recommended for appropriate primary-care developmental
surveillance (Level B).
4. Further developmental evaluation is required whenever a child fails to
meet any of the following milestones (Level B): babbling by 12 months;
gesturing (e.g., pointing, waving bye-bye) by 12 months; single words by 16
months; two-word spontaneous (not just echolalic) phrases by 24 months;
loss of any language or social skills at any age.
5. Siblings of children with autism should be carefully monitored for
acquisition of social, communication, and play skills, and the occurrence of
146 147
maladaptive behaviors. Screening should be performed not only for autism-
related symptoms but also for language delays, learning difculties, social
problems, and anxiety or depressive symptoms (Level B).
6. Screening specically for autism should be performed on all children
failing routine developmental surveillance procedures using one of the
validated instruments—the CHAT or the Autism Screening Questionnaire
(Level B).
7. Laboratory investigations recommended for any child with developmental
delay and/or autism include audiologic assessment and lead screening
(Level B). Early referral for a formal audiologic assessment should include
behavioral audiometric measures, assessment of middle ear function, and
electrophysiologic procedures using experienced pediatric audiologists
with current audiologic testing methods and technologies (Level B). Lead
screening should be performed in any child with developmental delay and
pica. Additional periodic screening should be considered if the pica persists
(Level B).
Level Two: Diagnosis and evaluation of autism
Strong Evidence Supports
1. Genetic testing in children with autism, specically high resolution
chromosome studies (karyotype) and DNA analysis for FraX, should be
performed in the presence of mental retardation (or if mental retardation
cannot be excluded), if there is a family history of FraX or undiagnosed
mental retardation, or if dysmorphic features are present (Level A).
However, there is little likelihood of positive karyotype or FraX testing in the
presence of high-functioning autism.
2. Selective metabolic testing (Level A) should be initiated by the presence
of suggestive clinical and physical ndings such as the following: if lethargy,
cyclic vomiting, or early seizures are evident; the presence of dysmorphic
or coarse features; evidence of mental retardation or if mental retardation
cannot be ruled out; or if occurrence or adequacy of newborn screening at
birth is questionable.
Good Evidence Supports
1. There is inadequate evidence at the present time to recommend an EEG
study in all individuals with autism. Indications for an adequate sleep-
deprived EEG with appropriate sampling of slow wave sleep include (Level
B) clinical seizures or suspicion of subclinical seizures, and a history of
regression (clinically signicant loss of social and communicative function) at
any age, but especially in toddlers and preschoolers.
2. Recording of event-related potentials and magnetoencephalography are
research tools at the present time, without evidence of routine clinical utility
(Level B).
3. There is no clinical evidence to support the role of routine clinical
neuroimaging in the diagnostic evaluation of autism, even in the presence of
megalencephaly (Level B).
4. There is inadequate supporting evidence for hair analysis, celiac
antibodies, allergy testing (particularly food allergies for gluten, casein,
candida, and other molds), immunologic or neurochemical abnormalities,
micronutrients such as vitamin levels, intestinal permeability studies, stool
analysis, urinary peptides, mitochondrial disorders (including lactate and
pyruvate), thyroid function tests, or erythrocyte glutathione peroxidase
studies (Level B).
This guideline summary is evidence-based. The AAN uses the following denitions for the level of
recommendation and classication of evidence. *Denitions for strength of the recommendations:
Level A: Established as effective, ineffective or harmful, (or established as useful/predictive ornot
useful/predictive) for the given condition in the specied population. Level B: Probably effective,
ineffective or harmful (or probably useful predictive or not useful/predictive) for the given condition
in the specied population. Level C: Possibly effective, ineffective or harmful (or possibly useful
predictive or not useful/predictive) for the given condition in the specied population. Level U: Data
inadequate or conicting. Given current knowledge, treatment (test, predictor) is unproven.
American Academy of Neurology. (2006). Guideline Summary for Clinicians, http://tools.aan.com/professionals/
practicecguidelines/guideline_summaries/Autism_Guideline_for_Clinicians.pdf
148 149
13. Tips for Making an Oral Care Visit
Successful for the Client With Autism
As the dental care provider, it is important to:
Schedule the visit for a time when the clinic is least busy. Some
clinicians have even opted to open their practice on Saturday to
create the quietest environment possible. Others schedule just
before, or just after, regularly occurring ofce hours.
Minimize wait time. Families often appreciate a heads-up if
appointments are running behind.
Use consistency in scheduling (same staff, same room, same
chair). Consistency is especially important in the initial phase of
visits.
Use consistency in approach to exam – same sequence of events,
familiar language/instructional approach.
Make manipulatives available in waiting area and in exam space.
Ask family if child has a sensitivity to certain types of lighting.
May need to modify during visit, if an issue.
Make pictures of ofce building, exam space and chair,
orthodontist/dentist, hygienist, available to family. Laminating will
improve durability. Take a picture of a child happily undergoing an
exam and make available to family for use in picture schedule.
Make icons of tools used and create a sequence sheet. Creating a
velcro sheet will allow sequence to be re-used and individualized
for patients.
Schedule a series of brief visits for newly entering patients. Pre-
determine goals for each visit, in consultation with family. Keep
visits successful. Avoid “going the extra mile” and squeezing in
extra steps.
Schedule a series of brief visits before a specic procedure to
familiarize patient with expected experiences (and staff if it is a
new patient).
Partner with families to create a successful experience
Consult with family during an initial visit without the child present, or over
the phone if that is more convenient for the family. Often unstructured time,
especially during adult conversation, poses a signicant challenge to the
child, and therefore to the parent.
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Topics for discussion
Is a system of positive reinforcement used in child’s learning
process? If so, what are the preferred reinforcers? If reinforcers
are to be used, determine who will provide. Often the parent
is quite willing to do this, if they are familiar with this type of
approach.
How is oral care performed at home? How much prompting is
required? What is child’s level of tolerance and/or participation in
oral hygiene? Is toothpaste used? Is mouthwash used?
What techniques does the family employ to increase
successfulness in learning new skills? What are their suggestions
for employing those techniques in a clinical setting?
Encourage caregivers/families to practice anticipated pieces of
the exam at home. Provide them with tools such as popsicle
sticks, bitewings, and the mouth mirror, for practicing. Once the
child can tolerate the experience in a sitting position, suggest
progressing to practicing with child in a supine position – if they
own a recliner, so much the better.
Emphasize importance of making practice sessions successful.
Keeping them brief, progressing slowly, and offering immediate
reinforcement are strategies for improving outcomes.
Troubleshooting for problems
Questions for families and caregivers to help increase sensitivity to subtle
changes in child’s behavior that may be indicative of a dental issue–
especially important for the child with minimal or no verbal communication
ability:
Has there been a change in the child’s eating habits? For instance,
does he or she prefer soft foods over the usually preferred crunchy
or hard items?
Has the child been avoiding chewing on one side of the mouth or
the other?
Is drooling present or increased?
Does the child grimace while eating, or stop eating frequently
during meals?
Does he or she chew on nonfood items? Does there seem to be
an increase in this? Are the items rubbery in texture?
Making the visit a positive experience for the child is arguably the most
important task to accomplish. Avoid the urge to “just get this one more
thing done”, or to push ahead when the child begins to show signs of
frustration and anxiety. Frequently, not only does the desired task not get
accomplished, but the child is even less willing to repeat any aspect of a
future visit. In the event a visit is perceived as a rather negative experience,
schedule another visit, or series of visits, for the purpose of regaining the
child’s trust. Make the goal whatever task can be successfully accomplished
(even if it is just sitting in the chair), with lots of verbal approval and or
positive reinforcement.
Much time and attention is required to successfully treat a child or adult
with autism, but once the foundation is laid, it pays off in dividends. Not
only can you feel condent about the care the child receives, but the visits
become progressively more pleasant and productive instead of more anxiety
producing for everyone.
127 W. Boone Ave. Spokane WA 99201 Phone: 1-509-328-1582
Fax: 1- 509-328-6342 Email: [email protected] Website: www.nwautism.org
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14. Frequently Used Terminology
Adaptive Physical Education (APE): A specially designed physical
education program for a child with developmental disabilities. Traditional
exercise forms, assessment techniques, and training protocols are adapted
to meet the specic needs of a person with developmental delays or
disabilities.
Adult Services: Refers to the many agencies and programs that are
provided to adults with specic needs such as disability, health, and income.
Americans with Disabilities Act (ADA): An equal opportunity, civil rights
law to protect any person who has an impairment that substantially limits
major life activities.
American Sign Language (ASL): A method of communicating by using
hand signs. Each sign represents either one word or concept that is typically
expressed with several spoken words. For words that do not have a sign,
nger-spelling is used (Coleman, l993).
Antecedent Behavior: What happens in or to the environment right before
a behavior occurs. This includes verbal, gestural or physical prompts, cues,
materials, language, and environmental factors (sensory input: noise, light,
smell, taste, touch), either occuring naturally or intentionally manipulated to
affect behavior.
Applied Behavior Analysis (ABA): The science in which procedures
derived from the principles of behavior are systematically applied to improve
socially signicant behavior to a meaningful degree and to demonstrate
experimentally that the procedures employed were responsible for the
improvement in behavior. (Cooper, Heron & Heward, 1987)
Asperger Disorder: One of the ve Autistic Spectrum Disorders; “similar
in most areas to Autism Disorder, except: no clinically signicant delay in
language; no clinically signicant delay in cognitive development, self-help
skills, adaptive skills, and curiosity about environment” (from the DSM-IV
criteria).
Attention Decit Disorder (ADD): A term previously used to describe an
individual with signicant attention problems and minimal hyperactivity. This
term is now represented by ADHD-inattentive type.
Attention Decit Hyperactivity Disorder (ADHD): The core components
are a short attention span for mental age, impulsivity (acting without
consideration of consequences), distractibility (inability to maintain focus
154 155
due to irrelevant external or internal stimuli) and motor overactivity
that ranges from dgetiness to continuous movement. Although all
children with this disorder have difculty with attention span, not all have
signicant hyperactivity. Therefore, these features have been categorized
into a combined type (both inattention and hyperactivity-impulsivity),
an inattention type and a hyperactivity-impulsivity type. ADHD must be
differentiated from other disorders that affect attention, such as anxiety
disorders, depression, learning disabilities and seizures.
Auditory Integration Training (AIT): A technique used to attempt to
desensitize children with ASD/PDD to certain frequencies of sound(s) that
they show sensitivity (Rimland & Edelson, l995).
Autism: Diagnostic Criteria for 299.00 Autistic Disorder. Diagnostic and
Statistical Manual of Mental Disorders. DSM IV, 2000)
(I) A total of six (or more) items from (A), (B), and (C), with at least two
from (A), and one each from (B) and (C)
(A) qualitative impairment in social interaction, as manifested by at least two
of the following:
1. Marked impairments in the use of multiple nonverbal behaviors such
as eye-to-eye gaze, facial expression, body posture, and gestures to
regulate social interaction
2. Failure to develop peer relationships appropriate to developmental level
3. A lack of spontaneous seeking to share enjoyment, interests, or
achievements with other people, (e.g., by a lack of showing, bringing, or
pointing out objects of interest to other people)
4. A lack of social or emotional reciprocity ( note: in the description, it gives
the following as examples: not actively participating in simple social play
or games, preferring solitary activities, or involving others in activities
only as tools or “mechanical” aids )
(B) qualitative impairments in communication as manifested by at least one
of the following:
1. Delay in, or total lack of, the development of spoken language (not
accompanied by an attempt to compensate through alternative modes of
communication such as gesture or mime)
2. In individuals with adequate speech, marked impairment in the ability to
initiate or sustain a conversation with others
3. Stereotyped and repetitive use of language or idiosyncratic language
4. Lack of varied, spontaneous make-believe play or social imitative play
appropriate to developmental level
(C) restricted repetitive and stereotyped patterns of behavior, interests and
activities, as manifested by at least two of the following:
1. Encompassing preoccupation with one or more stereotyped and restricted
patterns of interest that is abnormal either in intensity or focus
2. Apparently inexible adherence to specic, nonfunctional routines or
rituals
3. Stereotyped and repetitive motor mannerisms (e.g hand or nger apping
or twisting, or complex whole-body movements)
4. Persistent preoccupation with parts of objects
(II) Delays or abnormal functioning in at least one of the following areas,
with onset prior to age 3 years:
(A) social interaction
(B) language as used in social communication
(C) symbolic or imaginative play
(III) The disturbance is not better accounted for by Rett’s Disorder or
Childhood Disintegrative Disorder
Autism Behavior Checklist (ABC): One of ve independent subtests of
the Autism Screening Instrument for Educational Planning.
Autism Diagnostic Interview (ADI): A semi-structured investigator-
based interview(s) for the caregivers of children and adults for whom autism
or pervasive developmental disorders is a possible diagnosis. Training in this
instrument should be done by qualied staff.
Autism Diagnostic Observation Schedule (ADOS): A structured
observation schedule for the diagnosis of Autism Spectrum Disorder (ASD)/
Pervasive Developmental Disorder (PDD). It uses a standardized group
of social contexts and attempts to encourage interactions between the
individual and the interviewer. While the original ADOS can only be used with
higher functioning individuals, a newer instrument is available for use with
younger and nonverbal individuals. Its validity depends on the expertise of
the interviewer who should be trained in its use by qualied staff.
Autistic Disorder: The presence of markedly abnormal or impaired
development in social interaction and communication and markedly
restricted repertoire of activity and interests. Delays with onset occur prior
156 157
to age three. Manifestations of the disorder very greatly depending on
developmental level and chronological age of the individual.
Autism Spectrum Disorder (ASD): ASDs include autistic disorder,
pervasive developmental disorder - not otherwise specied (PDD-NOS,
including atypical autism), and Asperger syndrome. These conditions all have
some of the same symptoms, but they differ in terms of when the symptoms
start, how severe they are, and the exact nature of the symptoms. The three
conditions, along with Rett syndrome and childhood disintegrative disorder,
make up the broad diagnosis category of pervasive developmental disorders.
Backward Planning: A step-wise planning process that starts with desired
goals and plans backward to the current level of functioning and support.
Coequal: Equal with one another, as in rank or size; of equal importance.
Comorbid/Co-existing/Co-occurring: Existing simultaneously with and
usually independently (though not necessarily) of another medical condition.
Developmental Disability (DD). Under Washington State RCW
71A.10.020(3) the denition in law of a developmental disability is: A
disability attributable to:
Intellectual Disability
Cerebral Palsy
Epilepsy
Autism
OR
Another neurological or other condition closely related to
intellectual disability or that requires treatment similar to that
required for individuals with an intellectual disability.
Which:
Originated before the individual attained age eighteen;
Continued or can be expected to continue indenitely, and
Results in substantial limitations to an individual’s intellectual and/
or adaptive functioning.
The criteria for eligibility are further dened in the Washington
Administrative Code, WAC 388-823 effective July 5, 2005 and may be
reviewed at the following link www1.dshs.wa.gov/ddd/eligible.shtml
Diagnostic and Statistical Manual for Mental Disorders, 4th Edition
(DSM-IV) - American Psychiatric Association, 2000 (see Appendices for
Diagnostic Criteria for 299.00 Autistic Disorder); a classication system used
by mental health professional to classify mental disorders.
Discrete Trial Training (DTT): A training regimen in which a discrete trial
is the basic teaching unit. In general, a discrete trail consists of a single
instructional exchange between the instructor and the child which includes
a verbal directive (e.g., “say da”), a child’s response, (e.g., “da”) and the
instructor’s feedback to the child (e.g., “Good”). DTT most often involves
drills consisting of several reinforced trials. It is utilized to teach a variety of
skills.
Due Process: Legal safeguards to which a person is entitled in order to
protect his or her rights.
Early Intervention (EI): Specialized services provided to infants and
toddlers who are at-risk for or are showing signs of developmental delay.
Echolalia: The repetition of words. Immediate echolalia causes the
immediate repetition of a word or phrase. In some with autistic and
Asperger’s cases it may be a method of buying time to help process
language. If a child with autism is asked, “Do you want dinner?” and the
child echoes back “Do you want dinner?” followed by a pause and then
a response, “Yes. What’s for dinner?” In delayed echolalia, a phrase is
repeated after a delay, such as a person with autism who repeats TV
commercials, favorite movie scripts, or parental reprimands.
Employment Networks (EN): An employment network of providers
participating in the Social Security Administration’s Ticket to Work Program.
The EN provides or coordinates employment, vocational rehabilitation, and
support services to SSA beneciaries using their tickets to work. In return,
SSA pays the EN for employment outcomes achieved by the beneciaries
assigning their tickets to the EN.
Employment Specialist/Professional: Refers to and individuals that
assist people with disabilities to nd and keep a job. This includes job
marketing/development; individual planning or discovery of an individual’s
interests, skills and challenges; job coaching or teaching the skills necessary
to do the job; and maintenance or follow along support to help the person
retain the job.
Enclave: A form of supportive employment where a group of no more than
eight persons with disabilities work in an integrated employment setting
often with professional supervision.
158 159
Free and Appropriate Public Education (FAPE): Special education and
related services that:
1. Have been provided at public expense, under public supervision and
direction, and without charge;
2. Meet the standards of the State educational agency;
3. Include appropriate preschool, elementary, or secondary school education
in the State involved;
4. Are provided in conformity with the individualized education program
required by PL 105-l7, Section 614(d).
Follow-Along-Services: In Supported Employment, this term refers to
services and supports provided to a worker with a disability after job training
is completed.
Impairment Related Work Expense: Expenses related to the items a
person with a disability needs because of his/her impairment in order to
work; may be deducted during the eligibility process for SSDI or SSI.
Individual Earned Income Exclusion: Income that can be excluded for a
individual under age 22 in calculating SSI benets.
Individualized Education Program (IEP): A written statement for each
child with a disability that is developed and reviewed in accordance with PL
l05-l7 (see appendices).
Individuals with Disabilities Education Act (IDEA): The federal law that
mandates public education for children who have disabilities.
Individualized Family Service Plan (IFSP): A written plan providing
early intervention services to an eligible child birth through two years of age
and his or her family.
Incidental Teaching: A teaching method in which child-directed, natural
occurring activities are used to provide instruction to the child.
Inclusion: The practice of providing a child with disabilities an education
within the general education program with non-disabled peers. Supports
and accommodations may be needed to assure educational success in this
environment.
Intellectual Disability: A condition characterized by limitations in
performance that result from signicant impairments in measured
intelligence and adaptive behavior.
Job Analysis: The process of analyzing a job in terms of essential elements,
skills needed, and characteristics to aid in job matching and training.
Job Carving: A technique in advanced supportive employment programs
where a job is divided into components that can be done by a person with a
severe disability (taking a single task away from multiple “doers” and giving
it to a single doer).
Job Shadowing: The practice of allowing an individual to observe a real
work setting to determine their interest and to acquaint them with the
requirements of the job.
Least Restrictive Environment (LRE): The educational setting that
permits a child with disabilities to derive the most educational benet while
participating in a regular educational environment to the maximum extent
possible (Coleman, l993).
Local Education Agency (LEA): A public board of education or other
public authority legally constituted within a state of either administrative
control or direction of, or to perform a service function for, public elementary
or secondary schools in a city, county, township, school district, or other
political subdivision.
Milieu Teaching: Planned teaching environment in which everyday events
and interactions are therapeutically designed for the purpose of enhancing
social skills and building condence.
Natural Environment: The place where events or activities usually occur
for children who are typically developing.
Natural Supports: Refers to the use of person, practices, and things
that naturally occur in the environment to meet the support needs of the
individual.
People First: People rst language is a way of describing someone which
puts the person ahead of his or her medical label. Using “people rst”
language, for example, an individual would be described as “a person with a
disability” rather than “a disabled person” or “the disabled”.
Pervasive Developmental Disorder (PDD): A group of conditions with a
common dysfunction in the domains of socialization and communication. This
category includes:
Autistic Disorder
Asperger Disorder
Rett Syndrome
160 161
Childhood Disintegrative Disorder
Pervasive Developmental Disorder-Not Otherwise Specied
The “classic” form of PDD is autistic disorder. The core components are
qualitative impairments in socialization, communication and imaginative play
and repetitive behaviors/restricted interests with onset by age 3 years.
Plan for Achieving Self Support (PASS): A savings account that can be
excluded from income and assets of persons with disabilities to allow them
to save up for something that would make them self sufcient (e.g., college
fund). A person who is eligible for SSI gets a chance at PASS.
Procedural Safeguards: Legal protections (including mechanisms
or procedures) available to children, their parents and their advocates
to protect their rights in dealing with agencies and providers of early
intervention services.
School to Work Programs: These programs refer to general education
secondary programs developed under the School-to-Work Opportunity Act
of 1994 which include career education, work-based instruction experiences,
and efforts to connect individuals with vocational and post-school programs.
Self-Advocacy: People with disabilities speaking up for themselves are
considered self-advocates. It means that a person with a disability is entitled
to be in control of their own life, their belongings and how they are used.
It is about having the right to make decisions about their own life without
being controlled by others.
Self-Contained Classroom: The special class/learning center shall serve
children whose handicapping conditions are so severe that it requires
removal from a regular education program to provide part-time or full-
time educational services in this program option. Not all children assigned
to a special class/learning center will necessarily remain with the special
education teacher on a full-time basis. Special class/learning center program
option shall include placement in a special class/learning center program
located in a public school building; separate school in the school district;
public school program located in a separate facility; county board of mental
retardation and developmental disabilities facility; state residential school for
the deaf or for the blind; or a state institution.
Sensory Integration (SI): Therapy that is directed toward improving how
an individual’s senses process stimulation and work together to respond
appropriately.
Sensory Motor Processing: The process by which a person takes in
information from environment (through sensory receptors), interprets/
integrates the information to form some meaningful concept (not necessarily
conscious thought), and then uses that sensory information in a meaningful
way through a motor output (action).
Social Security Disability Income (SSDI): An income support payment
administered by the Social Security Administration that is provided to wage
earners who are no longer able to work because of their disability or to the
unmarried adult child of a wage earner who is disabled, retired, or deceased.
Special Education: Specialized instruction designed for the unique learning
strengths and needs of the individual with disabilities, from age 3 through
22.
Substantial Gainful Employment (SGA): The amount of income a person
can make after a trial work period and still receive SSI payments.
Supplemental Security Income (SSI): An income support payment
administered by the Social Security Administration that is provided to
children with disabilities and adults who are disabled and whose income and
assets fall below a prescribed level after accounting for social security work
incentives.
Supported Employment: A form of employment where training is done
at the job site and ongoing supports are provided to maintain employment.
Supported Employment is meant for persons with the most severe
disabilities. Supported Employment jobs are in integrated settings and may
consist of individual placement, mobile work crews, or enclaves.
Transition (early intervention): Young children who are developmentally
delayed and in Part C programs for Early Intervention move from one
program to the next.
Transition (adolescence): The process of moving from adolescent to adult
roles where the child reconciles their needs, interests, and preferences with
adult norms and roles.
Transition Planning: An plan that focuses on individual skills, interests,
and support needs in the areas of employment, future education, daily
living, leisure activity, community participation, health, self-determination,
communication, interpersonal relationships.
Transition from School to Work: A process of preparing a person with
ASD/PDD, beginning at an early age (approximately six years of age) for a
successful temporal passage of full integration into the community in terms
of work, recreation, and residence.
162 163
Waiver: An exception to a rule or regulation.
Work Incentives: A number of Social Security Work Incentives that allow
a person to exclude a part of their income to maintain eligibility for SSI
or SSDI. Includes PASS, IRWEs, Individual Earned Income Exclusion, and
extended eligibility for Medicaid.
Work Study: Jobs developed by the high school where the individual
receives credit.
15. References and Resources
Assistive Technology
Project Team: Technology to Educate Students with Autism, Johns Hopkins
University - Center for Technology in Education, 6740 Alexander Bell
Drive, Suite 302, Columbia, MD 21046 , PH 410-312-3800 - FAX
410-312-3868
University of Washington Center on Technology & Disability Studies. (2007).
Washington Assistive Technology Act Program. Retrieved April 25, 2008
http://watap.org/
Wisconsin Assistive Technology Integration Project. Assessing Students’
Needs for Assistive Technology (ASNAT). www.wati.org.
Behavior
Atwood, T., (2001) Asperger’s Syndrome: A guide for parents and
professionals. Philadelphia, PA: Jessica Kingsley publishers
Cooper, J., Heron, T.E., W.L. (2006). Applied behavior analysis (2nd ed.).
New York: Macmillan.
Durand, M., (2002) Sleep better: A guide to improving sleep for children with
special needs. Baltimore, MD: Paul Brookes Publishing Co.
Gouse, B., Wheeler, M. (1997) A treasure chest of behavioral strategies for
individuals with Autism. Arlington, Texas: Future Horizons.
Hodgdon, L., (1996). Visual Strategies for Improving Communication Volume
1: Practical Supports for School and Home. Troy, MI: Quirk Roberts
Publishing.
Jones, M. (1998) Within our reach: Behavior prevention and intervention
strategies for learners with mental retardation and autism. DDD Prism
Series, 1. Arlington, Virginia: Council for Exceptional Children.
Koegel, L.K., Koegel, R. L., Dunlap, G. (Eds). (1996). Positive Behavioral
Support. Baltimore, MD: Paul H. Brookes.
Kranowitz, C.S., Silver, L.B. (1998) The Out-of-Sync Child: Recognizing and
Coping with Sensory Integration Dysfunction. New York, NY: Skylight
Press.
Lovaas, I.O. (1981). Teaching Developmentally Disabled Children: The ME
Book. Austin, TX. Pro.-Ed.
Lovaas, I.O. (1987). “Behavioral Treatment and Normal Educational and
Intellectual Functioning in Young Autistic Children.” Journal of Consulting
and Clinical Psychology, 55, 3-9.
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Behavior (continued)
Maurice, C., Green, G., Luce, S.C. (1996). Behavioral intervention for young
children with autism: A Manual for Parents and Professionals. Austin, TX:
Pro.-Ed.
Miller, L.K. (1997). Principles of everyday behavior analysis (3rd ed.) Pacic
Grove, CA: Brooks/Cole.
Powers, M.D. (1989). Children with Autism: A Parent’s Guide. New York, NY:
Woodbine House.
Ruttenburg, B.A., Kalish, B.I., Wenar, C.,Wolf, E.G. (1977). Behavior rating
instrument for autistic and other atypical children. (rev. ed.) Philadelphia:
Developmental Center for Autistic Children.
Savner, J.L., Smith-Myles, B. (2000). Making Visual Supports - Autism and
Asperger Syndrome. Shawnee Mission, KS: Autism Asperger Publishing
Company.
Schopler E. Mesibov, G. (Eds.) (1994) Behavioral issues in autism. New York:
Klawer Academic/Plenum Publishers.
Schopler, E. (1995) Parent survival manual: A guide to crisis resolution in
autism and related developmental disorders. New York: Klawer Academic/
Plenum Publishers.
Smith, C.E. (1994). Communication-based intervention for problem
behavior. Baltimore, MD: Paul H. Brookes.
Smith, M.D. (1990). Autism and Live in the Community: Successful
interventions for behavioral challenges. Baltimore, MD: Paul Brooks
publishing Co.
Smith-Myles, B., Southwick, J. (2001). Asperger Syndrome and Difcult
Moments: Practical solutions for tantrums, rage and meltdowns. Shawnee
Mission, KS: Autism Asperger Publishing Company.
Turecki, S. (1989). The Different Child. New York, NY: Bantam Books.
Waltz, M. (1999). Pervasive Developmental Disorders: Finding a diagnosis
and getting help for parents and patients with PDD-NOS and Atypical
PDD. Sebastopol, CA: O’Reilly
Wheeler, M. (1998). Toilet Training for Individuals with Autism and Related
Disorders: A comprehensive guide for parents and teachers. Arlington,
TX: Future Horizons, Inc.
Communication
Burkhardt, L. (1993). Total Augmentative Communication in the Early
Childhood Classroom. Linda Burkhardt, 6201 Candle Court, Eldersburg,
MD, 21784.
Freeman, S.,Drake, L. (1998). Teach Me Language: A language manual for
children with Autism, Asperger’s Syndrome, and related developmental
disorders. Langley, British Columbia: SKF Books
Frost, L., Bondy, A. (1994). PECS: The Picture Exchange System Training
Manual. Pyramid Educational Consultants, Inc., 5 Westbury Dr., Cherry
Hill, NJ 06008.
Grandin, T., Scarinano, M. (1986). Emergence: Labeled Autistic. Nowato, CA:
Arena Press.
Gray, Carol. (1994). The New Social Story Book. Arlington, TX: Future
Horizons Publishers
Hodgdon, L. (1996). Visual Strategies for Improving Communication Volume
1: Practical Supports for School and Home. Troy, MI: Quirk Roberts
Publishing.
Kranowitz, C.S., Silver, L.B. (1998). The Out-of-Sync Child: Recognizing and
Coping with Sensory Integration Dysfunction. New York, NY: Skylight
Press.
Moyes, Rebecca A. (2001). Incorporating Social Goals in the Classroom.
Philadelphia, PA: Jessica Kingsley Publishers.
Prizant, B.M., Schuler, A.L., Wetherby, A.M. (1997). “Enhancing language and
communication: Theoretical Foundations.” In D. Cohen & F.
Quill, K.A. (1995). Teaching Children with Autism: Strategies to enhance
communication and socialization. New York, NY: Delmar Publishers Inc.
Quill, K. A. (2002). Do-Watch-Listen-Say: Social and Communication
Intervention for Children with Autism. Baltimore, MD: Paul H. Brookes
Publishing.
Smith, C.E. (1994). Communication-based intervention for problem
behavior. Baltimore, MD: Paul H. Brookes.
Sussman, Fern (1999). More than Words: Helping Parents Promote
Communication and Social Skills in Children with Autism Spectrum
Disorders. Toronto: The Hanen Centre
Community Transition
Baer, R., McMahan, R., Flexer, R. (1999) Transition Planning: A guide for
Parents and Professionals. Kent, OH: Kent State University.
Baer, R., Simmons, T., Flexer, R. (1996). “Transition practice and policy
compliance in Ohio: A survey of secondary special educators.” Career
Development for Exceptional Individuals, 19,61-72.
Bolles, R.N. (1995). What color is my parachute: A practical manual for job
hunters and career changers. Berkeley, CA: Ten Speed Press.
Brolin, D.E., Schatzman, B. (1989). “Lifelong career development.” In D.E.
Berkell and J.M. Brown (Eds.) Transition from school to work for persons
with disabilities. New York, NY: Longman.
Clark, G.M.,Kolstoe, O.P. (1995). Career development and transition
education for adolescents with disabilities (2nd. Ed.). Needham, MA: Allyn
& Bacon.
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Chance, P. (1997). First course in applied behavior analysis. Pacic Grove,
CA: Brooks/Cole.
Cooper, J., Heron, T., Heward, W. (1987). Applied Behavior Analysis. New
York: Macmillan.
Council for Exceptional Children (CEC). (2000). Making Assessment
Accommodations: A Toolkit for Educators (Document #P5376). Reston,
VA. Retrieved April 25, 2008 from http://eric.ed.gov/?id=ED445453
DATA. (Developmentally Appropriate Treatment for Autism). Experimental
Education Unit. University of Washington Retrieved April 25, 2008 http://
depts.washington.edu/chdd/uccdd/eeu_7/projdata_7.html
Dunn, Buron, K., Curtis, M. (2003). The Incredible 5-Point Scale. Shawnee
Mission, KS: Autism Asperger Publishing.
Fouse, B. (1996). Creating a “Win-Win IEP” for Students with Autism.
Arlington, TX: Future Horizons.
Harris, S.L., Handleman, J.S. (1994). Preschool Education Programs for
Children with Autism. Austin, TX: Pro-ed.
Harris, L.S., Weiss, M.J. (1998). Right from the start: behavioral
intervention for young children with autism: A guide for parents and
professionals. Bethesda, MD: Woodbine House.
Henry, S., Smith Myles, B. (2007). Comprehensive Autism Planning System.
Accessed May 21, 2008 at http://www.nprinc.com/autism/caps.htm
Krantz, P.J. McClannahan, L.E. (1993). Teaching children with autism to
initiate to peers: Effects of a script-fading procedure. Journal of Applied
Behavior Analysis, 26, 121-132.
Instruction (continued)
Mesibov GB, Shea V, Schopler E. (2005). The TEACCH Approach to Autism
Spectrum Disorders. New York, NY: Kluwer Academic/Plenum.
National Council on Disability. (2005). The Social Security Administration’s
Efforts to Promote Employment for People with Disabilities: New
Solutions for Old Problems. Retrieved April 28, 2008 http://www.ncd.gov/
newsroom/publications/2005/11302005
National Information Center for Children and Youth with Disabilities
(NICHCY). (1991). Transition Summary Series No. 7. Available www.
nichcy.org/resources/transition101.asp.
Organization for Autism Research. (2004). Life Journey Through Autism
Series. An Educator’s Guide to Autism. Danya International, Inc. and
Organization for Autism Research. Retrieved http://www.researchautism.
org/resources/reading/index.asp.
Organization for Autism Research. (2005) Life Journey Through Autism
Series. An Educator’s Guide to Asperger Syndrome. Danya International,
Inc. and Organization for Autism Research. Retrieved http://www.
researchautism.org/resources/reading/index.asp.
Organization for Autism Research. (2006) Life Journey Through Autism
Series. A Guide From Transition to Adulthood. Danya International,
Inc. and Organization for Autism Research. Retrieved http://www.
researchautism.org/resources/reading/index.asp.
Organization for Autism Research. (2003). Life Journey Through Autism
Series. A Parent’s Guide to Research. Danya International, Inc. and
Organization for Autism Research. Retrieved March 11, 2008 http://www.
researchautism.org/resources/reading/index.asp.
U. S. Department of Education. (1974). Family educational rights and
privacy act. 20 U.S.C. § 1232g; 34 CFR Part 99. Retrieved December 13,
2005 from http://www.ed.gov/policy/gen/guid/fpco/ferpa/index.html
US Department of Education. IDEA ’97 Final Regulations. Glossary of
Denitions and Acronyms. Denitions Dened in the “Denitions Used
in This Part” Section of Part 300--Assistance to States for the Education
of Children with Disabilities. 300.7 (c)(1)(i) Autism. Accessed December
5, 2007 from http://205.241.44.100/law_res/doc/law/regulations/regs/
denitions.php#sec300.7c1i
U.S. Department of Education. (1997). Individuals with Disabilities Education
(IDEA) Act Amendments of 1997. Retrieved May 8, 2008 http://www.
ed.gov/policy/speced/leg/idea/idea.pdf
U. S. Department of Education, (1973). Rehabilitation Education Act (REA).
Nondiscrimination on the basis of Handicap in Programs or Activities
Receiving Federal Financial Assistance. Effectuate Section 504. Retrieved
April 25, 2008 http://www.ed.gov/policy/rights/reg/ocr/edlite-34cfr104.
html.
178 179
Instruction (continued)
U.S. Department of Education (2000). Twenty Second Annual Report to
Congress on the Implementation of the Individuals with Disabilities
Education Act. (Prepared by the Division of Innovation and Development,
Ofce of Special Education Programs). Washington, DC: U.S. Department
of Education. Retrieved April 28, 2008 http://www.ed.gov/about/reports/
annual/osep/2000/preface.pdf.
U.S. Department of Education. (2004). Individuals with Disabilities Education
Improvement Act (IDEA) of 2004. Accessed May 21, 2008 http://
thomas.loc.gov/cgi-bin/query/z?c108:h.1350.enr:
US Department of Education, Ofce of Special Education Programs, Data
Analysis System (DANS) cited in Twentieth Annual Report to Congress
on the Implementation of the Individuals with Disabilities Education
Act. Retrieved April 25, 2008 http://www.ed.gov/about/reports/annual/
osep/2008/parts-b-c/30th-idea-arc.doc
Washington State Ofce of the Superintendent of Public Instruction (OSPI).
The Educational Aspects of Autism Spectrum Disorders manual 2003.
Retrieved May 1, 2008 website. http://www.k12.wa.us/SpecialEd/
pubdocs/Autism%20Manual.pdf
Curriculums
Circles I, II, and III. Intimacy and Relationships, (teaches
appropriate social distance skills) Stop Abuse, (an abuse
prevention curriculum) and Safer Ways (HIV/AIDS prevention
education). Leslie Walker-Hirsch, M.Ed. and Marklyn Champagne,
R.N., M.S.W.
Life Horizons I and II, Sexuality Education for Persons with Severe
Developmental Disabilities, Life Facts - Sexuality and Sex Abuse
Prevention. These curriculums are available from:
James Staneld Co. Inc.
Drawer 189
PO Box 41058
Santa Barbara, CA 93140
Phone: (800) 421-6534 fax: (805) 897-1187
YAI’s Relationship Series: Friendship Series, Boyfriend/Girlfriend Series,
and Sexuality Series
YAI/National Institute for People with Disabilities
Tapes and Publications
460 West 34th Street
New York, NY 10001-2382
Phone: (212) 273-6517 fax: (212) 629-4113
Sensory Integration
Anderson, E., Emmons, P. (1996). Unlocking the Mysteries of Sensory
Dysfunction: A Resource for Anyone Who Works With or Lives With, a
Child With Sensory Issues. Arlington, TX: Future Horizons
Ayers, A.J. (1979). Sensory Integration and the Child. Los Angeles, CA:
Western Psychological Services.
Bundy, A.C., Lane, S. J., Fisher, A.G., Murray, E. A. (2002) Sensory
Integration: Theory and Practice, 2nd Edition. Philadelphia, PA: F.A. Davis
Co.
Dunn Buron, Curtis, M. (2003). Incredible Five Point Scale: Assisting
Students with Autism Spectrum Disorders in Understanding Social
Interactions and Controlling Their Emotional Responses. Shawnee
Mission, Kansas: Autism Asperger Publishing Company.
Hannaford, Carla (1995). Smart Moves. Arlington, VA: Great Ocean
Publishers
Heller, Sharon (2002). Too Loud, Too Bright, Too Fast, Too Tight: What to
Do If You Are Sensory Defensive in an Overstimulating World. New York,
NY: Harper Collins.
Kranowitz, C.S. (1995). 101 Activities for Kids in Tight Spaces: At the
Doctor’s Ofce, on Car, Train, and Plane Trips, Home Sick in Bed. New
York, NY: St Martin’s Press.
Kranowitz, C.S., Silver, L.B. (1998). The Out-of-Sync Child: Recognizing and
Coping with Sensory Integration Dysfunction. New York, NY: Skylight
Press.
Kranowitz, C. S. (2001). Answers to Questions Teachers Ask About Sensory
Integration. Las Vegas, NV: Sensory Resources
Kranowitz, C.S. (2003). The Out-of-Sync Child Has Fun: Activities for Kids
with Sensory Integration Dysfunction. New York, NY: Pedigree.
Miller-Kuhaneck, H. (2001). Combining Intervention Approaches in
Occupational Therapy for Children with Pervasive Developmental
Disorders. American Occupational Therapy Association.
Miller-Kuhaneck, H., (2002). Autism: A Comprehensive Occupational Therapy
Approach. Orlando, FL: Harcourt School Publishers.
Schneider, C. C. (2001) Sensory Secrets: How to Jump-Start Learning in
Children. Akroyo, CA: Concerned Communications.
Trott, M., Laurel M.K., Windeck, S.L. (1993). Sensibilities: Understanding
Sensory Integration. Tucson, AZ: Therapy Skill Builders.
Williams, M., Shellenberger, S. (1994). How does your engine run? The alert
program for self-regulation. Albuquerque, NM: Therapy Works.
180 181
Sexuality
ere are many useful resources for providing sexuality training to children and adults with
developmental disabilities including books and videotapes. Most of the tools are useful as
clear and sometimes graphic descriptions of sexual functions and norms. John Mortlock
reported that “Advocates of the sexual ‘rights’ of people with autism will not be oering
positive help unless they accept the diculty that people with autism have in making
and sustaining the social interaction that is necessary in our society to establish a sexual
relationship.
Fegan, L., Rauch, A., McCarthy, W. (1993). Sexuality and People with
Intellectual Disability. 2nd ed., Baltimore, MD: Paul H. Brookes Publishing.
Grandin, T. (1995). Thinking in Pictures, and Other Reports from My Life with
Autism. New York, NY: Vintage Publishing.
Hingsburger, D. (1994). I Openers: Parents Ask Questions about Sexuality
and their Children with Developmental Disabilities. Family Support
Institute Press. 22.2.
Hingsburger, D. (1990). I Contact: Sexuality and People with Developmental
Disabilities. Bear Creek, NC: Psych-Media.
Hingsburger, D. (1990). I to I: Self-Concept and People with Developmental
Disabilities. Bear Creek, NC: Psych-Media.
Hingsburger, D. (1995). Just Say Know! Richmond Hill, ONT: Diverse City
Press.
Kempton, W. (1993). Socialization and Sexuality. Santa Barbara, CA:
Staneld Publishing.
Mirenda, P.,Erickson, K. (2000). Augmentative Communication and Literacy
in Autism Spectrum Disorders by Wetherby, A., Prizant, B. p.346.
Baltimore, MD: Paul Brookes Publishing Co.
MonatHaller, R.K. (1992). Understanding and Expressing Sexuality:
Responsible Choices of Individuals with Developmental Disabilities.
Baltimore, MD: Paul H. Brookes Publishing Co.
Mortlock, J. The Socio-sexual Development of People with Autism and
Related Learning Disabilities. Presentation given at Inge Wakehurst study
weekend, Nov., 1993.
Schuler, A., Wolfberg, P. (2000). “Promoting Peer Play and Socialization,
The Art of Scoffolding.” In Autism Spectrum Disorders by Wetherby, A.,
Prizant, B. Baltimore, MD: Paul Brookes Publishing Co.
Sgroi, S. (1989). Vulnerable Populations. Lexington, MA: Lexington Press
Summers.
Summers, J. A. (1996) The Right to Grow Up. Baltimore, MD: Paul Brookes
Publishing Co.
Social
Attwood, Tony. (1997). Asperger’s Syndrome - A Guide for Parents and
Professionals. Philadelphia, PA: Jessica Kingsley Publishers
Baron-Cohen, P., Howlin, S. (1998). Teaching Children with Autism to Mind-
Read: A Practical Guide for Teachers and Parents. New York, NY: John
Wiley & Son Ltd.
Begun, Ruth Weltmann. (1996). Ready-to-Use Social Skills Lessons and
Activities. Port Chester, NY: National Professional Resources, Inc.
Beyer, J., Gammeltoft, L. (2000). Autism and Play. Philadelphia, PA: Jessica
Kingsley Publishers.
Duke, M., Nowicki, S.,Martin, E. (1998). Teaching Your Child the Language of
Social Success. Atlanta, GA: Peachtree Publishers, Ltd.
Giangreco, Michael, F. (1997). Quick-Guides to Inclusion. Baltimore, MD:
Paul H. Brookes Publishing Company.
Gray, C. (1994). The New Social Story Book. Arlington, TX: Future Horizons
Publishers.
Hodgdon, L. (1996). Visual Strategies for Improving Communication Volume
1: Practical Supports for School and Home. Troy, MI: Quirk Roberts
Publishing.
Johnson, A. (2002). More Social Skills Stories. Solana Beach, CA: Mayer-
Johnson, Inc.
Maurice, C., Green, G., Luce, S.C. (1996). Behavioral intervention for young
children with autism: A Manual for Parents and Professionals. Austin, TX:
Pro.-Ed.
Moyes, R. A., (2001). Incorporating Social Goals in the Classroom.
Philadelphia, PA: Jessica Kingsley Publishers.
Quill, K.A., (1995). Teaching Children with Autism: Strategies to enhance
communication and socialization. New York, NY: Delmar Publishers Inc.
Reese, P.B., Challenner, N.C. Autism and PDD Adolescent Social Skills
Lessons. LinguiSystems, Inc.
Savner, J. L., Smith-Myles, B. (2000). Making Visual Supports - Autism and
Asperger Syndrome. Shawnee Mission, KS: Autism Asperger Publishing
Co.
Smith-Myles, B., Adreon, D. (2001). Asperger Syndrome and Adolescence.
East Moline, IL: Fair Winds Press.
Smith-Myles, B., Southwick, J., (2001). Asperger Syndrome and Difcult
Moments. Shawnee Mission, KS: Autism Asperger Publishing Co.
Susnik, J. (2002). Who, What, and Why. Solana Beach, CA: Mayer-Johnson,
Inc.
Vernon, A. (1989). Thinking, Feeling, Behaving - An Emotional Education
Curriculum for Children. Champaign, IL: Research Press.
182 183
Social (continued)
Wing, L. (2002). The Autistic Spectrum: A Guide for Parents and
Professionals. London, England: Robinson Publishing.
16. Getting Connected: Internet/
Phone
Note: Please be advised that this is not a comprehensive list of internet
resources and is provided as a general guideline for the types of internet
resources available.
Asperger’s Syndrome
AdultASD.org, www.adultasd.org
Asperger Syndrome Education Network, Inc. (ASPEN), www.aspennj.org
Asperger Syndrome Information and Support (OASIS) @ MAAP Services
(More Advanced Individuals with Autism, Asperger Syndrome, and
Pervasive Developmental Disorder), www.aspergersyndrome.org
Center for Parent Information and Resources (formerly National
Dissemination Center for Children with Disabilities), www.
parentcenterhub.org
Global and Regional Asperger Partnership (GRASP), www.grasp.org
New Horizons for Learning, www.education.jhu.edu/PD/newhorizons
Stephen Shore, www.autismasperger.net
Autism Diagnostics
American Academy of Pediatricians Referral Service, (847) 434-4000, www.
healthychildren.org/englis/tips-tools/nd-pediatrician/pages/pediatrician-
referral-service.aspx
Children’s Village (Yakima), (509 574-3200, www.yakimachildrensvillage.org
Mary Bridge Pediatric Neurology Clinic, (253) 792-6630, www.multicare.org/
mary-bridge-neurology
Randall Children’s Hospital at Legacy Emmanuel, ((503)
276-6500, www.legacyhealth.org/locations/hospitals/
randall-childrens-hospital-at-legacy-emmanuel
Seattle Children’s Autism Center, (206) 987-8080, www.seattlechildrens.org/
clinics-programs/autism-center
Seattle Children’s Neurodevelopmental Centers, (206) 987-2210, www.
seattlechildrens.org/clinics-programs/neurodevelopmental
Sendan Center, (360) 305-3275, www.sendancenter.com/wp
UW Autism Centers, www.depts.washington.edu/uwautism
Seattle: (206) 221-6806 Tacoma: (253) 692-4721
Yakima Memorial Hospital, (509) 575-8000, http://www.yakimamemorial.
org/medical-services-childrens-services.asp
184 185
Autism Organizations
Autism National Committee, www.autcom.org
Autism Network International, www.ani.ac
Autism Outreach Project, 1-888-704-9633, www.nwesd.org/autism
Autism Society of America, 1-800-3-AUTISM, www.autism-society.org
Autism Society of Washington, 1-888-ASW 4 YOU, www.autismsocietyofwa.
org
Autism Society of Washington-Grant County Chapter, (509) 717-0076, www.
autismsocietyofwa.org/v2/grant-county
Autism Society of Washington-Southwest Chapter, (360) 852-4555, www.
autismsocietyofwa.org/asw-southwest/?page_id=5
Autism Society of Washington-Spokane Chapter, www.autismsocietyofwa.
org/asw-spokane
Autism Society of Washington-North Central Chapter, (509) 630-0421, www.
autismsocietyofwa.org/v2/wenatchee
Autism Speaks National, www.autismspeaks.org
Autism Speaks Washington State email: WASHINGTONSTATEADVOCACY@
autismspeaks.org
C.A.P.A. (Community Alternatives for People with Autism) Tacoma, (253)
536-2339
Families for Early Autism Treatment (FEAT), (206) 763-3373, www.feat.org
First Signs, www.rstsigns.org
More Advanced Individuals with Autism, Asperger, www.aspergersyndrome.
org
OASIS – (Online Asperger Syndrome Information and Support), www.
aspergersyndrome.org
Washington Autism Alliance and Advocacy, (425) 894-7231, www.
washingtonautismadvocacy.org
Autism Research
Autism Research Institute, www.autism.com
Autism Speaks, www.autismspeaks.org
Global Autism Collaboration, www.globalautismcollaboration.com
Autism Services
Aptitude Habilitation Services (800) 991-6070, www.aptitudeservices.com
Autism Community Services, (360) 735-8670
Boyer Children’s Clinic, (206) 325-8477, www.boyercc.org
Children’s Village (Yakima), (509 574-3200, www.yakimachildrensvillage.org
Haring Care Clinic, (206) 543-4011, www.haringcenter.washington.edu
Legacy Salmon Creek, (360) 487-1777, www.legacyhealth.org/health-
services-and-information/health-services/for-children-a-z/development-
and-rehabilitation/legacy-childrens-center.aspx
Madigan Army Medical Center (253) 968-5658, www.mamc.amedd.army.mil/
clinical/exceptional-family-member/default.aspx
Mary Bridge Neurology Clinic, (253) 792-6630, www.multicare.org/
mary-bridge-neurology
Northwest Autism Center (Spokane), (509) 328-1582, www.nwautism.org
Providence-Sacred Heart Children’s Hospital (Spokane), (509) 474-3131,
www.shmcchildrens.org
Randall Children’s Hospital at Legacy Emmanuel, ((503)
276-6500, www.legacyhealth.org/locations/hospitals/
randall-childrens-hospital-at-legacy-emmanuel
Seattle Children’s Autism Center, (206) 987-8080, www.seattlechildrens.org/
clinics-programs/autism-center
Tri-Essence Care, (360) 682-6499, www.triessencecare.com/index.html
UW Autism Centers, www.depts.washington.edu/uwautism
Seattle: (206) 221-6806 Tacoma: (253) 692-4721
Bookstores/Videos
Autism Asperger Publishing Company, www.aapcpublishing.net/bookstore.
aspx
Autism Resources, www.autism-resources.com/books.html
Autism Society of America-North Carolina, www.autismbookstore.com
Autism Speaks Video Glossary, www.autismspeaks.org/video/glossary.php
Autism Web-A Paren’ts Guide to Autism and PDD, www.autismweb.com/
books.htm
Future Horizons www.fhautism.com/books-and-resources
Jessica Kingsley Publishers, www.jkp.com
Staneld Publishing, Specialists in Special Education, www.staneld.com
Stephen Shore, www.autismasperger.net/books.htm
Education
American Speech-Language-Hearing Association, www.asha.org
Association for Behavior Analysis International, www.abainternational.org
Alert Program, www.alertprogram.com
Autism Outreach Project, (888) 704-9633, www.nwesd.org/autism
186 187
Autism Theory and Practice, (206) 685-8926 or (888) 469-6499, www.
keeplearning.uw.edu
Center for Disease Control and Prevention (CDC): Learn the Signs. Act Early,
www.cdc.gov/ncbddd/autism/actearly/
Center for Parent Information and Resources (formerly National
Dissemination Center for Children with Disabilities), www.
parentcenterhub.org/resources
Center of Social and Emotional Foundations for Early Learning, www.csefel.
vanderbilt.edu
Clinical Behavior Analysts, LLC, www.abatherapy.net
DIR Floortime, www.oortime.org
DoToLearn, www.do2Learn.com
ERIC (Educational Resources Information Center), 1-800-LET-ERIC, www.
eric.ed.gov
Lovaas Institute for Early Intervention, www.lovaas.com
National Education Early Childhood Technical Assistance Center, www.nectac.
org
Ohio Speech Language Hearing Association, www.oslha.org
Picture Exchange Communication System-Pyramid Educational Consulting
Services, www.pecs.com
Portland State University Autism Training and Research Center, (503) 725-
5207, www.autismstudy.pdx.edu/resources/parent-workshops.php
SCERTS Model-Barry Prizant, www.scerts.com
Social Learning and Understanding-Linda Gray, www.thegraycenter.org
Social Thinking-Michelle Winner Garcia, www.socialthinking.com
TEACCH, www.teacch.com
Visual Strategies-Linda Hodgdon, www.usevisualstrategies.com
Wisconsin Early Autism Project, www.wiautism.com
Family Support
Arc of Washington State, (360357-5596, www.arcwa.org
Families for Early Autism Treatment (FEAT), (425) 223-5126, www.featwa.
org
Family Health Hotline, 1-800-322-2588
Father’s Network of Washington State, (425) 653-4286, www.
fathersnetwork.org
Kinship Care in Washington, 1-800-737-0617, www.dshs.wa.gov/kinshipcare
Open Doors for Multicultural Families, (253)216-4479, www.
multiculturalfamilies.org
Parent to Parent, 1-800-821-5927, www.arcwa.org/getsupport/
parent_to_parent_p2p_programs
PAVE of Washington, 1-800-5-PARENT, www.wapave.org
Seattle Children’s Autism Blog, www.theautismblog.seattlechildrens.org
Self Advocates of Washington (SAW), www.jcchoices.org/orgs/383.html
STOMP (Specialized Training of Military Parents), 1-800-572-7368, www.
stompproject.org
Washington Autism Alliance and Advocacy, (425) 894-7231, www.
washingtonautismadvocacy.org
Washington State Medical Home, www.medicalhome.org/diagnoses/autism.
cfm
Wings for Autism, www.arcofkingcounty.org/index.php/get-connected/
news-events/2-general/119-wings-for-autism
WithinReach Family, www.withinreachwa.org
Federal Agencies
Center for Disease Control and Prevention (CDC), Autism Information Center
www.cdc.gov/ncbddd/autism/index.htm
National Academy of Sciences, http://www.nasonline.org
National Institute of Health, www.nih.gov
National Institute of Mental Health, www.nimh.nih.gov
Ofce of Special Education Programs (OSEP), www.ed.gov/about/ofces/list/
OCERS/OSEP/index.html
United States Congress, www.congress.org
United States Department of Education, www.ed.gov
United States House of Representatives, www.house.gov
United States Senate, www.senate.gov
Higher Education
Disabilities, Opportunities, Internetworking, and Technology, www.
washington.edu/doit
Disability Support Services Council in Washington State, (360) 704-4400,
www.sbctc.ctc.edu/index.aspx
Education Quest Foundation, http://www.educationquest.org
Financial Aid for Students with Disabilities, (206) 685-3648, www.
washington.edu/doit/brochures/academics/nancial-aid.html
Thinkcollege.net, www.thinkcollege.net
188 189
Legal Assistance
Northwest Justice Project, 1-888-201-1012, www.nwjustice.org
People First of Washington, 1-800-758-1123, www.peoplerstofwashington.
org
Self Advocates In Leadership (SAIL), www.sailcoalition.org
Washington Autism Alliance and Advocacy, (425) 894-7231, www.
washingtonautismadvocacy.org
National Organizations
American Academy of Pediatricians Referral Service, (847) 434-4000, www.
healthychildren.org/englis/tips-tools/nd-pediatrician/pages/pediatrician-
referral-service.aspx
American Association of People with Disabilities, www.aapd.com
Arc of the United States, www.thearc.org
Autism Speaks 100 Day Kit Download, www.autismspeaks.org/
family-services/tool-kits/100-day-kit
Center for Parent Information and Resources, www.parentcenterhub.org
Children and Adults with Attention Decit Disorder, www.chadd.org
Developmental Disabilities Council, 1-800-634-4473, www.ddc.wa.gov
Learning Disabilities Association, www.LDOnLine.org
National Institute for People with Disabilities, www.yai.org
National Institute of Mental Health, http://www.nimh.nih.gov/health/
publications/autism/index.shtml
National Organization on Disabilities, www.nod.org
Technical Assistance Alliance for Parent Centers - The Alliance, www.pacer.
org/alliance
The Association for Persons with Severe Handicaps (TASH), www.tash.org
Special Education Law
Client Assistance Program, www.washingtoncap,org
COPAA (Council of Parent Advocates and Attorneys), www.copaa.net
Developmental Disabilities Council, www.ddc.wa.gob
Disability Rights Advocates, www.dralegal.org
Disability Rights Washington (formerly WA Protection and Advocacy System)
www.disabilityrightswa.org
IDEA Technical Assistance Paper-Ofce of Superintendent of Public
Instruction (OSPI) WA, www.k12.wa.us/Specialed/pubdocs/TAP1.pdf
Special Education Ombudsman, www.governor.wa.gov/oeo
Wrightslaw, www.wrightslaw.com
Transition
Adolescent Health and Transition Project, (206) 685-1350, www.depts.
washington.edu/healthtr/
Center for Change in Transition Services Web, (206) 296-6494, www.
seattleu.edu/ccts
Self Employment and Social Security Work Incentives for Person’s with
Disabilities (Consulting and Training on Employment and Transition to
Work), www.grifnhammis.com
U.S. Department of Education Ofce of Civil Rights-Serving student
populations facing discrimination and the advocates and institutions
promoting systematic solutions to civil rights problems, (800) 872-5327,
www.ed.gov/about/ofces/list/ocr/index.html
Washington Initiative for Supported Employment, www.gowise.org
Washington State Agencies
Department of Early Learning (DEL)
Early Support for Infants and Toddlers, Ages Birth throught Two, 1-866-
482-4325, www.del.wa.gov/development/esit/default.aspx
Department of Health (DOH)
Adolescent Health and Transition Project, (206) 685-1350, 206-616-1660,
depts.washington.edu/healthtr/
Autism Awareness Project, www.doh.wa.gov/youandyourfamily/
illnessanddisease/autism.aspx
Children with Special Health Care Needs, (360) 236-3571, www.doh.
wa.gov/youandyourfamily/illnessanddisease/infantschildrenandteens/
healthandsafety/childrenwithspecialhealthcareneeds.aspx
Washington State Medical Home, (206) 685-1279, www.medicalhome.org/
diagnoses/autism.cfm
Department of Social and Health Services (DSHS)
Children’s Health Insurance Program (SCHIP), 1-877-543-7669, www.hca.
wa.gov/medicaid/pages/index.aspx
Division of Developmental Disabilities (DDD) www.dshs.wa.gov/ddd
Division of Vocational Rehabilitation, www.dshs.wa.gov/dvr
Mental Health Services and Information, http://www.dshs.wa.gov/dbhr/
mh_information
Ofce of the Education Ombudsman, (866) 297-2597, www.governor.
wa.gov/oeo/default.asp
Ofce of the Superintendant of Public Instruction
Autism Outreach Project (888) 704-9633, www.nwesd.org/autism
Career and Technical Education Web, www.k12.wa.us/careerteched
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Regional ADA Technical Assistance Center, 1-800-949-4232, www.
dbtacnorthwest.org
Special Education Web, (360)725-6075, www.k12.wa.us/specialed
State Coordinator for NCLB (No Child Left Behind) Web: www.k12.wa.us/
ESEA/default.aspx
University of Washington
Adolescent Health and Transition Project, (206) 685-1350, www.depts.
washington.edu/healthtr
Adults and Elders, (206) 543-3677, www.depts.washington.edu/chdd/ucedd/
adults_eld_1/1_aemain.html
Autism Centers, www.depts.washington.edu/uwautism
Seattle: (206) 221-6806 Tacoma: (253) 692-4721
Barnard Center for Infant and Mental Health Development, (206) 563-9200,
www.depts.washington.edu/chdd/ucedd/cimhd_3/3_ctdsmain.htm
Center on Human Development and Disability (CHDD) www.www.depts.
washington.edu/chdd/index.html
Center for Technology and Disability Studies 206-685-4181, www.depts.
washington.edu/chdd/ucedd/ctds_4/4_ctdsmain.htm
Child Development Clinic (206) 598-9346, www.depts.washington.edu/chdd/
ucedd/ctu_5/child_devclinic_5.html
Community Disability Policy Initiative 206-685-4010, www.depts.washington.
edu/chdd/ucedd/cdpi_6/6_cdpimain.html
Haring Care Clinic, (206) 543-4011, www.haringcenter.washington.edu
Experimental Education Unit, 206-616-3450, www.depts.washington.edu/
chdd/ucedd/eeu_7/haring-eeu.html
Genetics Program, (206) 543-3370, www.depts.washington.edu/chdd/ucedd/
genetic_8/8_geneticsmain.html
LEND Clinical Training Unit, (206) 685-1350, http://depts.washington.edu/
lend/
University Center for Excellence in Developmental Disabilities, (206)
543-7701
17. Insurance Connected: Internet/
Phone
Note: Please be advised that this is not a comprehensive list of internet
resources and is provided as a general guideline for the types of internet
resources available.
Asperger’s Syndrome
Asperger Syndrome Education Network, Inc. (ASPEN), www.aspennj.org
Asperger Syndrome Information and Support (OASIS) @ MAAP Services
(More Advanced Individuals with Autism, Asperger Syndrome, and
Pervasive Developmental Disorder), www.aspergersyndrome.org
Center for Parent Information and Resources (formerly National
Dissemination Center for Children with Disabilities), www.
parentcenterhub.org
Global and Regional Asperger Partnership (GRASP), www.grasp.org
New Horizons for Learning, www.education.jhu.edu/PD/newhorizons
Stephen Shore, www.autismasperger.net
Autism Diagnostics
American Academy of Pediatricians Referral Service, (847) 434-4000, www.
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17. Insurance
Families in Washington may have insurance options for accessing ABA for
their child, including Apple Health for Kids, Tri Care, plans covered under the
Public Employees Benet Board, and some private insurance companies.
To access services for a child covered under Apple Health, email aba@
hca.wa.gov or call Gail Kreiger at 360-725-1681. Once a client’s Medicaid
eligibility has been conrmed, HCA issues a letter that includes the ABA
providers who are accepting clients in their geographic area.
For children covered by Tri Care, contact your Exceptional Family Member
Program coordinator.
For children covered under the Public Employee Benets Plans, contact your
insurance company and ask about how to access autism benets including
ABA.
Although these companies are required to cover ABA, eligibility and
enrollment for each plan is different. Even if your child has a diagnosis of
autism, he/she may not qualify for ABA. In addition to qualication criteria,
there are long wait lists for services in some areas. There are simply not
enough qualied professionals to provide ABA for the number of children
eligible for services. Several state agencies are working to increase the
capacity for that can provide ABA to decrease the wait times.
If you want to inquire about ABA services for a medicaid enrolled child email
[email protected] or call Gail Kreiger at 360-725-1681 or Marlene Black
360-725-1577.
Once a client’s Medicaid eligibility has been conrmed, HCA issues a letter
that includes the ABA providers who are accepting clients in their geographic
area.
More information is available at: www.hca.wa.gov/medicaid/abatherapy/
pages/index.aspx
For questions about enrolling to serve PEBB members or its coverage, please
contact Regence Providers contact Customer Service at 888-849-3682 or
Members contact Customer Service at 888-849-3618
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