Leading The Way: Autism-Friendly Youth Organization Guide

Leading the Way
Autism-Friendly Youth Organization Guide

Autism Speaks does not provide medical or legal advice or services. Rather, Autism Speaks provides
general information about autism as a service to the community. The information provided in this Guide is
not a recommendation, referral or endorsement of any resource, therapeutic method, or service provider and
does not replace the advice of medical, legal or educational professionals. Autism Speaks has not validated
and is not responsible for any information or services provided by third parties. You are urged to use
independent judgment and request references when considering any resource associated with the
provision of services related to autism.
© 2013 Autism Speaks Inc. Autism Speaks and Autism Speaks It’s Time To Listen & Design are trademarks owned by Autism Speaks Inc. All rights reserved.
Table of Contents
Introduction .............................................................................................................................. 1 – 4
About Autism: What You Need to Know ................................................................... 6 – 14
Inclusion: Leading the Way in Access for Everyone ............................................. 16 – 23
Getting Started: Leading the Way to an

Autism-Friendly Inclusive Environment .................................................................. 25 – 42
People and Places: Creating an Environment for Success .................................. 44 – 55
Strategies for Success:

Supporting Learning and Growth in Youth with Autism .................................. 57 – 65
Introduction
About the Autism-Friendly
Youth Organization Guide
The purpose of this guide is to better prepare youth-serving organizations to serve youth and families with autism.
In this document, autism refers to Autism Spectrum Disorder (ASD), which includes individuals diagnosed with
Autistic Disorder, Pervasive Developmental Disorders, Not Otherwise Specified, and Asperger’s Disorder.
Autism Speaks believes that recreation and leisure activities are particularly important for people with autism. We
know that participating in such activities often produces opportunities to practice social skills, physical aptitude and
increase motivation while also increasing self-confidence and fuller integration into the community.
The information that follows will be useful for helping integrate youth with autism into your existing programs,
communicating with parents, and training your staff. With help from respected experts in the field of autism and
special education, experienced parents and caregivers, we have included an introduction to autism and specific
strategies that will allow you to lead the way for youth with autism to have the same formative experiences through
community organizations that are available to their typical peers.
We have included a wealth of information, from a wide variety of sources. New tools and resources will be
added as they become available. We encourage you to become familiar with the kit and share it with your youth
organization colleagues.
The blue text are links you can click on for further information.
About Autism Speaks

Autism Speaks is the world’s leading autism science and advocacy organization. It is dedicated to funding research
into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders;
and advocating for the needs of individuals with autism and their families. Suzanne and Bob Wright, the grandparents
of a child with autism, founded Autism Speaks in February 2005. Mr. Wright is the former vice chairman of General
Electric and chief executive officer of NBC and NBC Universal. Since its inception, Autism Speaks has committed over
$180 million to research and developing innovative resources for families. Each year Walk Now for Autism Speaks
events are held in more than 95 cities across North America. On the global front, Autism Speaks has established
partnerships and related activities in over 40 countries on five continents to foster international research, services
and awareness. To learn more about Autism Speaks, please visit AutismSpeaks.org.
“One in every 88 youth in America is on the autism spectrum. That is at least one athlete in every
six youth basketball teams, one youth in every two Scout troops and countless kids among summer
camps and after-school programs.
My professional and personal worlds collided when a college student, earning his Wood Badge beads,
approached me – a professor, a Scouter, the Executive Director of the Nonprofit Leadership Alliance and
the parent of a child with autism. We worked together to develop a local Boy Scout leader training on
autism-friendly scouting, which expanded my interest on working with youth organizations so that they
can more effectively serve youth with autism.
Nearly every major national youth-serving organization in the United States focuses on specific areas
of youth development. Boy Scouts of America focuses on character and moral development, personal
fitness, and citizenship. Boys and Girls Clubs of America focus on developing youth into productive,
caring, responsible citizens. Camp Fire builds caring, confident youth and future leaders.
Ultimately, serving youth with autism as part of these programs coincides with the missions of nearly all
youth-serving organizations. I like to call including people struggling with autism in youth organizations
a Mission Match. This makes the responsibility of youth-serving organizations to serve young people and
families struggling with ASD not only a good idea, but also a mission-focused ethical responsibility.”
Dr. Nathan A. Schaumleffel, CPRP, CNP, CFRM, IYD

Parent of a Child with Autism
Associate Professor of Recreation and Nonprofit Leadership & Campus/Executive Director,
Nonprofit Leadership Alliance Certification Program Indiana State University
Autism Speaks Autism-Friendly Youth Organization
Survey Findings
In 2012 Autism Speaks conducted a national survey on community youth organizations. Through this effort, we’ve
learned more about the barriers youth with autism face in fully participating in these programs and have a better
understanding of what would help organizations successfully include young people with autism.
This survey assessed the needs and wants of parents /caregivers of youth with autism in the area of youth organizations.
Of the 1,018 respondents, 83% parents of males, and 17% parents of females – youth with autism.
• When asked about the organized youth activities they would like made available to their youth, team sports
and camping/outdoor adventure topped the list.
• The key unmet needs families experience in relation to youth organizations are:
– Staff educated on autism and trained on effective interventions to help people with autism
– Programs and/or summer camps offering adaptive services for people with autism
– Affordable programs
– Opportunities for socialization with neurotypical youth
• Of those respondents whose youth participate in youth organization programs:
– 56% felt that their child was moderately or extremely safe, while 18% felt their child was not safe at all.
– 57% were moderately or extremely satisfied with the program their child participated in while 19% were
not at all satisfied with their current program.
• The top barriers that families experience to having their child participate in a youth organization are:
– No programs specifically designed for youth with autism (55%)
– Lack of behavior management services (50%)
– Untrained staff (50%)
– Expense of the program, lack of scholarships (48%)
Survey respondents felt the key training needs for youth organization staff that Autism Speaks should address were
behavior management, tips for working with people with autism, communication strategies, and activity safety risks
like wandering, hypothermia, drowning, etc.
This survey served as some of the impetus for the development of this guide and a web portal that will serve to better
prepare staff and volunteer youth program leaders on appropriate ways to interact with, mentor, and manage youth on
the autism spectrum. These resources will be updated regularly, as new information becomes available, so I encourage
you to check back regularly at www.autismspeaks.org/family-services.
Marianne Sullivan, RN, MN

Assistant Director of National Outreach and Resources
Autism Speaks
Mother of an adult son with autism
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Credits and Acknowledgements
Autism Speaks would like to recognize the Autism-Friendly Youth Organization Guide Advisory Board for their support
and guidance.
Dr. Nathan A. Schaumleffel, CPRP, CNP, CFRM, IYD
Parent of a Child with Autism
Associate Professor of Recreation and Nonprofit Leadership &
Campus/Executive Director, Nonprofit Leadership Alliance Certification Program
Indiana State University
Andrew Bowman
Undergraduate Project Assistant & Wood Badge Trained Boy Scout Leader
Recreation and Nonprofit Leadership Program
Indiana State University
Kelli Ember
Executive Director
Autism Speaks – Charlotte, North Carolina
D.D. Gass
Director, Program Planning & Effectiveness Camp Fire
Liz Godwin
Associate Director of Youth Programs
The Y of Charlotte, North Carolina
Lynn Koegel, Ph.D.
Clinical Director of Autism Services
Koegel Autism Center
University of California, Santa Barbara
Jay Lytton
Self-Advocate
Job Coach and Project Development
New Horizons
Los Angeles, California
Diana Yeisley
Parent Advocate
Fundraising Chair, Greater Hartford Community Leadership Council
Autism Speaks
About Autism:
What You Need
to Know
About Autism: Did You Know
What You • Autism now affects 1 in 88 children
and 1 in 54 boys.
Need to Know • More children will be diagnosed
Goal: To acquire a basic understanding
with autism this year than with
of what autism is and understand the AIDS, diabetes and cancer combined.
challenges and strengths possessed • Autism is the fastest-growing serious
by people with autism. developmental disability in the U.S.
• Boys are four times more likely
What is Autism than girls to have autism.
Autism is a general term used to describe a group of
complex neuro-developmental disorders also known
as Pervasive Developmental Disorders (PDD) or Autism Spectrum Disorders (ASD). These disorders are characterized,
in varying degrees, by challenges related to:
• Communication
• Social Interaction
• Restrictive or repetitive behaviors and interests
People with autism may also experience other difficulties including medical issues, differences in coordination and
muscle tone, sleep disturbances, altered eating habits, anxiety or disordered sensory perceptions.
Keep in Mind
• Autism is a neurological/biological disorder, not a psychological or emotional condition.
• The features, abilities and severity of symptoms vary considerably among people with autism.
• Always assume intelligence, teach competence, promote independence and be respectful.
What Causes Autism?
Not long ago, the answer to this question would have been “we have no idea.” Research is now delivering the
answers. We now know that there is no one cause of autism just as there is no one type of autism. Over the last
five years, scientists have identified a number of rare gene changes, or mutations, associated with autism. A small
number of these are sufficient to cause autism by themselves. Most cases of autism, however, appear to be caused
by a combination of autism risk genes and environmental factors influencing early brain development.
Although autism appears to have its roots in very early brain development, the most obvious signs and symptoms
tend to emerge between two and three years of age. Often parents are the first to notice that their child is showing
unusual behaviors such as failing to make eye contact, not responding to his or her name or playing with toys in
unusual, repetitive ways. Sometimes an autism spectrum disorder is diagnosed later in life, often in relation to
learning, social or emotional difficulties.
What’s Different About

People with Autism? Autism Spectrum
Things that may make a person with autism different
Disorders per DSM IV
can also be seen as exceptional abilities. It is important • Autism
to think of him or her as intelligent, even if language or • Asperger Syndrome
behavioral difficulties do not reveal this in the way you
expect. Characteristics of someone with autism can be • PDD-NOS (Pervasive Development
seen as both challenges and strengths. For example, a Disorder – Not Otherwise Specified)
child who seems inflexible or rigid may also be the one
who is the best at following the rules of your program.
• Rett Syndrome
People with autism may display some or all of these • Childhood Disintegrative Disorder
characteristics: Note: There are planned revisions to the definition
• Difficulty understanding language, gestures and/or of autism spectrum disorder (ASD) in the
social cues upcoming 5th edition of the Diagnostic and Statistical
Manual of Mental Disorders (DSM-5), scheduled for
• Limited or no speech publication in spring 2013. Please visit Autism Speaks
www.autismspeaks.org for regular updates.
• When there is speech, it can be repetitive or
relate primarily to one particular topic
• Limited or no eye contact
• Difficulty participating in back-and-forth conversations or interactions
• Social awkwardness
• Intense interest in unusual topics or objects
• Repetitive behaviors, such as pacing or lining things up, spinning, hand flapping or rocking
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• Sensitivity to light, sound, smell, taste or touch
• Abnormal fears and/or lack of appropriate fear for real dangers
• Difficulty managing transitions, changes in routine, stress and frustration
• Strong visual skills
• Good rote learning and long-term memory skills (math facts, sports statistics, etc.)
• Adherence to the rules
• Honesty
• Intense concentration or focus, especially on a favorite activity
• Ability to understand and retain concrete concepts and patterns
• Strong interest and/or ability in mathematics, technology, music and art
Tips for Communication with

People With Autism
• Speak calmly.
• Use direct, concrete phrases.
• Instructions should contain no more than two steps.
• Allow extra time for the person to respond.
• Avoid using phrases that have more than one meaning, like “cut it out.”
• Avoid touching. If necessary, gesture or gently guide the person.
• Be alert to the possibility of outbursts or unexplained behavior. If the person is not
harming themselves or others, just wait for these behaviors to subside.
Other issues that often accompany autism:

• Seizure disorder • Gastrointestinal disorders
• Tic disorders • Mental health disorders
• Poor nutrition (anxiety, depression, mood disorders)
• High rates of accidents and injuries • Sleep Problems
Tips to Support Children with
Autism in Youth Programs:
Be Welcoming and Supportive
• Meet the child where he is and learn from him.
• Respect him as an individual.
• Do not talk about him in his presence as if he isn’t there.
• Set clear expectations and boundaries.
• Be consistent.
• Develop and implement structure.
• Practice and provide repetition to help with understanding and to build skills.
• Expect growth. Keep your standards high.
Develop Strategies to Compensate for Challenges
• Offer preferred seating or placement and allow for additional response time.
• Provide organizational supports like written schedules, lists, visual cues, and specific verbal directions.
• Be aware of a child’s sensory needs. Avoid or prepare for triggers like fire alarms.
• Give breaks for self-regulation.
• With small steps and supports, allow the participant to exhibit success.
• Reward what you want to see with positive reinforcement. Use the child’s interests to engage and motivate him.
Educate and Communicate
• Educate other youth participants about autism.
• Promote acceptance and understanding among peers and staff.
• Support social development with role-playing, modeling,
and rewards. Make sure to include typical peers.
• Communicate with family members
and caregivers.
• Ask questions and share what works. Problems solve
what isn’t working.
• Always keep learning and be creative.
Finally
• Relax and have fun.
• Celebrate success.
• Treasure the individual.
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Reflect:
In what ways do you think the unique strengths of people with autism could benefit your
youth organization?
_____________________________________________________________________________________________
_____________________________________________________________________________________________
_____________________________________________________________________________________________
People with autism are all unique. One child can have very different strengths, needs and challenges from another.
The first goal of someone working with children with autism is to seek to understand.
How do you think you can work best with family, caregivers and the child to understand them?
_____________________________________________________________________________________________
_____________________________________________________________________________________________
_____________________________________________________________________________________________
Resources:
Autism Speaks Video Glossary www.autismspeaks.org/what-autism/video-glossary
This glossary contains video clips that can help you see what autism “looks like.” It shows the subtle
differences between typical and delayed development in young children.
Autism Speaks Resource Library www.autismspeaks.org/family-services/resource-library
For those who want to learn more about autism, browse the latest books, magazine articles, educational
manuals, software, and much more.
Autism Speaks Resource Guide www.autismspeaks.org/family-services/resource-guide
A comprehensive list of autism services and providers by geographic location. You can use this information as a refer-
ral tool for families who have children with autism, and as a way to find potential partners in your local area.
The Official Autism 101 Manual by Karen L. Simmons with contributions by Temple Grandin, Anthony Attwood, Darold
A. Treffert, Bernard Rimland, Jed E. Baker, and more
Autism Spectrum Disorders: The Complete Guide to Understanding Autism, Asperger’s Syndrome,
Pervasive Developmental Disorder, and Other ASDs by Chantal Sicile-Kira
Overcoming Autism: Finding the Answers, Strategies, and Hope That Can Transform a Child’s Life
by Lynn Koegel, Claire LaZebnik
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Examples of People First Language
By Kathie Snow
visit www.disabilityisnatural.com to see the complete article.
Remember: a disability descriptor is simply a medical diagnosis; People First Language respectfully puts the person
before the disability; and a person with a disability is more like people without disabilities than different!
Say: Instead of:

People with disabilities. The handicapped or disabled.
He has a cognitive disability/diagnosis. He’s mentally retarded.
She has autism (or a diagnosis of...). She’s autistic.
He has Down syndrome (or a diagnosis of...). He’s Down’s; a mongoloid.
She has a learning disability (diagnosis). She’s learning disabled.
He has a physical disability (diagnosis). He’s a quadriplegic/is crippled.
She’s of short stature/she’s a little person. She’s a dwarf/midget.
He has a mental health condition/diagnosis. He’s emotionally disturbed/mentally ill.
She uses a wheelchair/mobility chair. She’s confined to/is wheelchair bound.
He receives special ed services. He’s in special ed.
She has a developmental delay. She’s developmentally delayed.
Children without disabilities. Normal or healthy kids.
Communicates with her eyes/device/etc. Is non-verbal.
Customer Client, consumer, recipient, etc.
Congenital disability Birth defect
Brain injury Brain damaged
Accessible parking, hotel room, etc. Handicapped parking, hotel room, etc.
She needs... or she uses... She has problems with...has special needs.
Keep thinking—there are many other descriptors we need to change!
Excerpted from Kathie’s People First Language article, available at www.disabilityisnatural.com.

Copyright 2009-13 Kathie Snow, All Rights Reserved, used with permission. Contact braveheartpress@msn.com for reprint permission. Visit www.disabilityisnatural.com
for new ways of thinking!
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Inclusion:
Leading the
Way in Access
for Everyone
Inclusion: Leading the Way in
Access for Everyone
Goal: To realize the importance and benefit of including people with autism in
youth-serving organizations and programs.
What is Inclusion?
“For me, inclusion is about a community where everyone is recognized for their differences and everyone is
recognized as belonging – not only in our schools, but in our communities.” - Dr. Joseph Petner, Educator
Inclusion is about offering the same activities to everyone, while providing support and services to accommodate
people’s differences. Inclusive organizations actively reach out to people with disabilities and seek to understand
and appreciate their differences, while fostering a sense of belonging.
Inclusion in Community Programs Means...

• Making all programs in which typically developing youth and their families participate accessible and
available to youth with disabilities and their families.
• Developing community programs for individuals with and without disabilities.
• Placing individuals with disabilities in the same community programs that their parents would choose for
them if they did not have disabilities.
• Providing opportunities for special services to be provided and individual needs to be met, within typical
community settings.
• Providing opportunities for social relationships between individuals with and without disabilities.
• Teaching all youth to understand, accept, and value human differences.
Why is Inclusion Important?

“If every child matters, every child has the right to a good start in life. If every child matters, every child has
the right to be included. And that is so important for children with special needs.” - Cherie Blair
Ultimately, the most important thing about inclusion is that it recognizes and honors the fundamental value of
each person.
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Inclusion is a Right and a Responsibility
• Inclusion in employment, educational, recreational and community settings is a basic element of human rights.
• Integrating people with disabilities is the right thing to do. We do not want to live in a world that is divided into
the typical world and the disabled world.
• It is the responsibility of our youth organizations, community groups, and faith communities to take an active
role in promoting the idea of inclusion. Most youth organizations focus on specific areas of character development
and growth for young people, which makes including people with disabilities a good idea, but also a mission-
based responsibility.
Inclusion Works to the Benefit of All

“Through the program, Sara has gained a sense
Types of Inclusion
of responsibility with learning to help others. Her
leadership qualities have increased along with her Full Inclusion
confidence. She wants to continue staying in the Youth with disabilities are always included
program since she has developed friendships.” in activities with non-disabled participants,
- Sara’s mom while being provided with appropriate
The youth with autism: supports and services.
• get to participate in programs in their community
with their siblings, friends and neighbors. Partial Inclusion
• learn from their peers who serve as role models to Wherever possible, youth with disabilities
help them with social skills and communication. are included in general activities and
• receive preparation for adult life in the community. treated like a full member of the group.
Peers:
However, they can be pulled out for
specialized activities that might be
• learn empathy and are exposed to diversity. Our youth
begin to see people first and the disability second.
disruptive to the full group.
• become comfortable interacting with people
with disabilities.
• see that people with disabilities are like them in many ways, and that they have unique strengths along with
their challenges.
Did You Know:

Safeguards such as the Americans with Disabilities Act and Section 504 of the Rehabilitation Act guarantee youth
with disabilities the right to participate in youth programs. Enacted in 1990, the Americans with Disabilities Act is a
powerful civil rights law that applies to most programs serving youth.
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What is the ADA:
The Americans with Disabilities Act is a civil rights law that gives
children and adults with disabilities the right to play, work and live
in the community with the same opportunities as people without
disabilities. The essence of the ADA is to have a more inclusive society
and to remove stereotypes that may get in the way of people who
have disabilities as they participate in the daily life of our communities.
What Does ADA Cover?

To ensure non-discrimination, your program or organization needs to have the following standards in place:
• Equal Opportunity: Youth with disabilities must not be denied equal opportunity to participate and benefit from
programs and activities.
• Eligibility: Eligibility criteria that would screen out youth with disabilities may not be used unless necessary for
the provision of services and activities.
• Integration: Integration is central to the purpose of ADA. Youth with disabilities must be integrated into your
programs to the maximum extent appropriate. Separate programs are permitted when necessary to ensure
equal opportunity, but this doesn’t mean that youth with disabilities can be excluded from regular programs if
they chose to participate in them.
• Reasonable Modifications: When necessary to ensure equal opportunity, reasonable modifications must
be made to policies, practices and procedures. If the program can demonstrate that a modification would
fundamentally alter the nature of the services it provides, it is not required to make the modification.
• Surcharges and Costs: Extra charges cannot be imposed on youth with disabilities or their families.
• Additional Requirements: Additional requirements may not be imposed on people with disabilities that are
not imposed on others.
Tips: A Successful Inclusion Program

• Commitment for a successful inclusion program must come from the top down. Your board and
staff leadership must recognize and support the program.
• Teamwork among program staff, family members, caregivers, and the child’s team is crucial.
• Parents should be actively involved in planning for inclusion.
• Disability training and awareness programs should be made available to staff and volunteers.
• Incorporate program modifications that allow the child with autism to share activities and
experiences with other participants.
• Focus on the participant’s strengths.
• Encourage interaction between youth with autism and their typically developing peers.
• Be flexible. If something doesn’t work well, be prepared to try again with something new.
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Reflect:
Is inclusion currently a part of your youth organization? If so, what is working for you? If not, what do
you think are the first steps toward getting started?
_____________________________________________________________________________________________
_____________________________________________________________________________________________
_____________________________________________________________________________________________
How do you think inclusion benefits:
Youth with autism and their families?
_____________________________________________________________________________________________
_____________________________________________________________________________________________
_____________________________________________________________________________________________
Other non-disabled participants in your organization?
_____________________________________________________________________________________________
_____________________________________________________________________________________________
_____________________________________________________________________________________________
Staff and volunteers?
_____________________________________________________________________________________________
_____________________________________________________________________________________________
_____________________________________________________________________________________________
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Resources:
The Institute on Community Integration
http://ici.umn.edu
This is the website for the University of Minnesota Institute on Community Integration, a Center for
Excellence in Developmental Disabilities. The site offers research, training and information sharing on
policies and practices to ensure that all children, youth, and adults with disabilities are valued by, and
contribute to, their communities of choice.
Kids Together Inc.

www.kidstogether.org
Kids Together, Inc. was an organization founded by parents of young children with disabilities. Their goal is to
promote children with disabilities being a part of what every other child was and to promote the understanding that
having a disability was one small part of their children’s lives. Great resources on how to be an “includer.”
Disability is Natural
www.disabilityisnatural.com
The mission of Disability is Natural is to encourage new ways of thinking about developmental disabilities, in the
belief that our attitudes drive our actions, and changes in our attitudes and actions can help create a society where
all children and adults with developmental disabilities have opportunities to live the lives of their dreams, included in
all areas of life.
Americans with Disabilities Act (ADA) Information

www.usdoj.gov/crt/ada/adahom1.htm
The U.S. Department of Justice ADA site provides FAQs, technical support and guidelines related to
implementing the Americans with Disabilities Act.
Inclusion: 450 Strategies for Success: A Practical Guide for All Educators Who Teach Students With Disabilities
[Paperback] Peggy A. Hammeken (Author)
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Autism/Disability Inclusion Self-Assessment
Adapted from the Disability Inclusion Self-Assessment developed
by Partners for Youth with Disabilities
Accessibility: Always Usually ½ the Time Seldom Never
Do your materials (print and web) include an

inclusion or non-discrimination policy?
Does your registration process include a question related to

any accommodations that might be required?
Does staff know how to respond to requests for

reasonable accommodations?
Is program staff trained to use, arrange for or produce materials in

alternative formats for the purpose of orientation and program activities?
Do you promote and market your accessibility to

people with autism?
Creativity and Flexibility: Always Usually ½ the Time Seldom Never
Do relevant staff and/or volunteers have the skills and commitment

to adapt program activities, games, and sports OR offer a variety of
activities to engage all participants?
When designing program activities, are multiple learning styles

taken into consideration?
Do program participants have flexible and alternative opportunities

for demonstrating skills or lessons learned?
Are staff and/or volunteers sensitive to sensory issues participants may

have and willing to work to minimize triggers that can be discomforting
(can include light, noise, bright colors, and textures)?
Are participants allowed adequate time to learn a

new skill or perform tasks?
Do staff and/or volunteers give warning and provide extra support for
participants in case of changes in schedule and/or as they transition
from one activity to the other?
21
Communication: Always Usually ½ the Time Seldom Never
Are staff and/or volunteers trained in person-first

and inclusive language?
Are rules and directions (and, where applicable, rewards and

consequences) stated in a clear, concise and step-by-step manner?
Are pictures, gestures and role modeling used to ensure that

all participants understand rules and directions?
Are participants encouraged to demonstrate their understanding of

rules and directions to ensure they understand?
Promoting Social Skills: Always Usually ½ the Time Seldom Never
Are all participants held to the same expectations with regard to

participation and achievement?
Do staff and/or volunteers recognize the unique skills, talents

and contributions of those with varying abilities?
Do staff and/or volunteers work to engage participants socially

and guide them in developing relationships with others?
Do staff and/or volunteers model respect for diversity

and take advantage of changes to normalize differences?
Are staff and/or volunteers careful not to single out or

stigmatize people with disabilities?
Are relevant staff and/or volunteers trained on how to coach

participants on when, how and with whom to disclose his or her
disability and, when necessary, reasonable accommodation needs?
Are relevant staff and/or volunteers trained to respond appropriately

to instances of bullying?
Are relevant staff trained in positive behavior modification/

reinforcement techniques?
22
Organizational Policies and Procedures: Always Usually ½ the Time Seldom Never
Does your organization collaborate with entities that specifically serve people
with disabilities to promote visibility within the disability community?
Are staff and/or volunteers offered disability etiquette training at

the start of their involvement with the program?
Are parents of youth with disabilities encouraged to strategize

adequate support for their children?
Are staff and/or volunteers encouraged and provided tools to gather

more information about a specific disability when appropriate?
Are mechanisms in place to monitor the program’s success

with regard to inclusion?
Does your organization have a financial plan to reasonably

accommodate people with disabilities in programs and activities?
Human Resources: Always Usually ½ the Time Seldom Never
Are efforts made to incorporate inclusion as

a point on staff agendas?
Are efforts made to hire staff with expertise related to

disability inclusion?
Are efforts made to recruit qualified people with disabilities

for open positions?
Are efforts made to bring people with disabilities onto

the board of directors?
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Getting Started:
Leading the
Way to an
Autism-Friendly
Inclusive
Environment
Getting Started: Leading the Way to an
Autism-Friendly Inclusive Environment
Goal: To learn what steps your organization needs to take to
incorporate youth with autism into your program.
A Commitment to Inclusion and Diversity

Youth with autism constantly experience barriers to experiencing the enjoyment of so many activities that the rest of
us take for granted. Their abilities are overlooked and their capacity underestimated. The barriers they face are often
more a result of the environment in which they live rather than a factor of their ability to participate.
Downloading this guide is an important step in your commitment to inclusion and to valuing the lives of all youth.
You are creating an opportunity for children with autism to experience the community activities that are so important
to the development of our youth.
Successful inclusion will only happen with an organization-wide commitment to serving all of your community’s youth.
All levels of staff and volunteers must adopt an inclusive philosophy, and this new way of thinking can transform the
organization. Your organization will be a true reflection of the community you serve.
Overcoming the Fear of the Unknown

“Initially I had some apprehension about incorporating children with autism into our regular activities.
By the end of the session though, I saw how much their inclusion had changed all of us for the better –
my team and the other campers. Seeing them strive to overcome obstacles and persevere helped all of
us grow and become a closer group. Our campers with autism are my inspiration.
Working with children with autism has provided me with an opportunity to see the world in a different way.
I see them strive to overcome obstacles and persevere, and learn to persevere myself. They are my inspiration.”
- Steven, YMCA Summer Camp
Inclusion is going to take time, preparation and patience. One of the first barriers that you may have to overcome
is the negative attitudes and fear of the unknown. Your staff and volunteers may fear that their time will be taken up
almost exclusively by youth with special needs, leaving little time for other program participants. Typically developing
youth may be afraid of being with others who aren’t like them. Fear is a natural reaction to something we don’t
understand and/or have experience with. However, we need to make sure that fear faced instead of avoided. When
fears are avoided, we see people with disabilities either excluded all together or integrated physically, but not socially.
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Conquering Fear
• Don’t pretend fears and negative attitudes about people with disabilities don’t exist among your staff and
volunteers. Address them and design a plan to help your team overcome them.
• Question all the stereotypes or beliefs you may have about autism, and do your homework. Refer to the About
Autism section of this guide and the resources provided to learn more. Remember, you are relating to a young
person, not a disorder.
• The most effective way of eliminating fear and changing attitudes is through exposure. As your team and
program participants are exposed to more people with autism, their attitudes will change.
• Focus on similarities instead of differences; strengths instead of limitations.
Five Steps to Becoming an Inclusive Youth Organization

1. Examine your organization’s mission statement. Does it encompass your philosophy on inclusion and
your desire to serve people of all abilities? An example of a strong inclusive mission comes from the Boys and
Girls Clubs of America:
“To enable all young people, especially those who need us most, to reach their full potential
as productive caring, responsible citizens.”
Make sure that your mission statement is not exclusionary and invites participation from all. If you aren’t sure
what message your mission is sending, share it with a few others and ask for feedback.
Share your inclusive mission statement wherever you can. Display it in your facilities. Include it on your website
and on printed materials. This is a statement that all staff and volunteers should be familiar with.
2. Review your admissions policy.
Take a moment to review your admission policies. Are they very rigid? Are they mostly based on achievement of
certain skills? Youth organizations must have policies related to admission and enrollment, but it is important to
make sure they do not exclude groups of people by demanding a particular skill.
Example of a Rigid Policy
An organization’s policy states that youth will not be allowed in the swimming pool with flotation devices.
Many children with disabilities would benefit from the opportunity to be in a pool with their typically developing
peers, but would not be able to participate without a flotation device. Therefore, an inclusion support you
could provide would be to allow a youth to participate with a flotation device.
Example of a Skills Based Requirement
A music camp may have a requirement that to participate a child must perform a solo song, dance or
instrumental arrangement. This may not be possible for all children. An example of an inclusion support
would be to find another way for the child to participate – perhaps as a technical assistant.
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3. Create or modify your existing intake and
enrollment process to be mindful of inclusion.
Registration
A youth organization’s intake and enrollment process
helps acclimate the family to your services and Do’s and Don’ts
gives them the opportunity to provide you with the • If your program is full, you are not
information you need to serve their child. required to create a space for a child
This process usually begins with a telephone or with a disability, but you also cannot
e-mail inquiry from a parent. It is important that the deny a space if there is an opening
people who respond to these general inquiries are because of the disability.
aware of the organization’s commitment to inclusion
and have participated in basic training. It is very easy • Your registration and/or enrollment
for a parent who is used to running into roadblocks form should include a question that
to get discouraged. asks whether the participant requires
Usually, if there is an interest from the family, the any type of accommodation for a
parent and child will visit the program so they can medical condition or disability.
see the facility and get more information. This is • You may not ask for a diagnosis, but
a good time for you to learn more about the child, you should ask open-ended questions
what the family’s goals are and the need for that will help you understand what kind
accommodations or support might be. At the end of supports will be needed.
of this section is a list of sample intake questions to
use when speaking with families. This is also a good
time to assure parents that the information about their
child will be kept confidential.
Other things to consider with the family when they
are enrolling their child:
• Establish a plan for ongoing communication,
whether it is a written log, phone calls, e-mails, or
check in at drop off or pick up.
• Be thorough in your description of activities. Ask
questions and be a good listener.
• If the participant uses assistive technology,
consider asking the family to train a staff member on the equipment.
• Invite the parent to share information about the child with program staff at a staff meeting or
other appropriate time.
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4. Evaluate your program from an inclusion perspective.
Use the checklist provided at the end of the Inclusion section to evaluate your program as you plan for inclusion.
Remember, for inclusion to be effective, the process must involve everyone from board members to program
staff to the receptionist and the custodial team. Everyone working in the organization needs to understand
the commitment to inclusion and be allowed to
share their thoughts and have an impact on
decision-making. Inclusion involves
5. Make a commitment to training for all staff all team members
and volunteers.
• The board and executives who help
Committing to ongoing training for staff and craft the inclusion policy and establish
volunteers around inclusion is crucial to the success the commitment to an inclusive youth
of your program. The organization’s philosophy of
organization
inclusion should be regularly communicated –
and the most successful training not only raises • The financial team who develop budgets
awareness about people with disabilities, but also • The program or administrative staff
increases the knowledge and skills of your teams.
Lots of Ways to Learn
• The marketing team who design printed
and web materials
• All new employees and volunteers should receive
orientation that includes information on inclusion. • The people who answer the phones and
• Provide orientation that includes information on are the first point of contact for families
inclusion for all new employees and volunteers. • The facilities and custodial staff who
• Give presentations at staff or other regularly ensure the environment is conducive
scheduled meetings. to inclusion
• Incorporate job coaching from supervisors or sen-
ior staff members
• Attendance at inclusion-related conferences
• Begin online training
• Share stories about successful inclusion
experiences in organizational materials
• Assign seasoned staff to present training that they
have researched at meetings with other staff.
• Have families of children with autism speak
at meetings.
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Sample Non-Discrimination Statements
The Department of Parks and Recreation actively seeks and supports participation
by all people with a variety of interests and abilities in our programs and services.
The Mathematics Foundation of America does not discriminate based on gender, race,
creed, color, national or ethnic origin, disability, marital status, or sexual orientation in
the administration of its educational programs, admissions policies, employment practices,
financial aid, or any other programs. At Canada/USA Mathcamp, we strive to create
a diverse community that welcomes students and faculty from all backgrounds; we feel
that this diversity is one of our greatest strengths.
Tips: Reaching out to the Community

for Participants
“Since taking a more inclusive approach to marketing, we have seen an increase in membership
of kids with disabilities in the Boys & Girls Club. Making a few small changes has made the
Club more welcoming. Kids with and without disabilities have formed new and lasting friendships.
Creating an inclusive environment is teaching our children to embrace the diverse community
in which we all live.”
• Develop relationships with organizations and professionals in your area that serve people with
autism. The Autism Speaks Resource Guide is a great place to start to find out what groups are
serving people with autism in your community.
• Include information about your inclusion philosophy in all of your marketing materials – your website,
brochures, flyers, posters, e-mail, social media.
• Make sure that non-discrimination statements are on all of your promotional material, and that
material is welcoming and inviting.
• Spread the word via current parents and participants, teachers, community leaders that your
organization is an inclusive program.
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Working with Parents
“I spent months trying to find a summer camp that would accept my five-year-old son, Corey, who has autism.
Because he is non-verbal, all of the camp directors were hesitant to include him because they had never
worked with someone with autism before. When I finally found a camp that accepted him without hesitation,
I almost didn’t believe what I’d heard. He attended camp with typical peers along with his aide. It was an
incredible experience for him that really impacted his social development for over the next year.” - Corey’s mom
The people who know the child you will be working with best are the parents or caregivers. Your relationship with
them is important to building an environment of success for youth with autism.
Building Successful Relationships with Families

• Be considerate of the family’s needs and expectations.
• Be a good listener. Listen with compassion and respect. Always respect the family’s confidentiality.
• Invest in the relationship. Take time to get to know the family members and build a rapport. This will go
a long way toward developing trust.
• When presenting concerns about their child, make sure to frame them in a positive way and be ready to
develop solutions hand-in-hand with the family.
• Communicate, communicate, communicate.
Inclusion is Happening Now

A number of youth organizations are developing programs and practices to attract
and accommodate youth with disabilities. Following is a partial list:
• Academy for Educational Development • National 4-H Council
• Big Brothers Big Sisters • National After School Association
• Boy Scouts of America • National Recreation and Park Association
• Boys & Girls Clubs of America • National Wildlife Federation
• Camp Fire USA • Operation Fresh Start
• Chabot Space and Science Center • The After-School Corporation
• City Year • The Corps Network
• Girl Scouts of the USA • The Washington Center
• Imagination Stage • Utah Conservation Corps
• Mass Mentoring • Wilderness Inquiry
• Minnesota Conservation Corps • YMCA
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Reflect:
What are your current attitudes about people with autism or other disabilities?
_____________________________________________________________________________________________
_____________________________________________________________________________________________
_____________________________________________________________________________________________
How can you support your team members in becoming more comfortable working with people with
autism and other disabilities?
_____________________________________________________________________________________________
_____________________________________________________________________________________________
_____________________________________________________________________________________________
Resources:
Kids Included Together
http://kitonline.org/
Kids Included Together (KIT) specializes in providing best practices training for community–based
organizations committed to including children with and without disabilities into their recreational,
child development and youth development programs.
Autism Education
www.autismeducation.net
Their primary purpose is to provide information and training to families and professionals regarding best
practices in autism treatment.
Autism Internet Modules

www.autisminternetmodules.org
The Autism Internet Modules were developed with one aim in mind: to make comprehensive, up-to-date, and usable
information on autism accessible and applicable to educators, other professionals, and families who support individuals
with autism spectrum disorders (ASD). Written by experts from across the U.S., all online modules are free, and are
designed to promote understanding of, respect for, and equality of persons with ASD.
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“About Me” Profile Form
Student’s Name:
What are some of the things that you are most interested in?
What upsets you?
What are you afraid of?
What makes you laugh?
What is ONE thing you would like to get better at this year?
What calms you down when you are overwhelmed or upset?
What rewards work well for you?
What do you do after school or on weekends?
Person completing form:

Relationship to student:
Email address of family or caregiver contact:
Phone number of family or caregiver contact:
What is the best way to contact you?
What days or times are convenient for you to meet with the school team?
Are there any issues that you would like to discuss or hear more information about?
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Parent Questionnaire:
Creating a Successful Experience for Your Child with Autism
About Our Program
What do you see here that you think your child will really enjoy? What are his favorite activities?
_____________________________________________________________________________________________
_____________________________________________________________________________________________
_____________________________________________________________________________________________
What are some of his fears?
_____________________________________________________________________________________________
_____________________________________________________________________________________________
_____________________________________________________________________________________________
Do any particular sounds, smells or tactile sensations bother him?
_____________________________________________________________________________________________
_____________________________________________________________________________________________
_____________________________________________________________________________________________
How can we adjust the environment to meet him/he needs?
_____________________________________________________________________________________________
_____________________________________________________________________________________________
_____________________________________________________________________________________________
What kind of accommodations can we make to help him be successful in our program?
_____________________________________________________________________________________________
_____________________________________________________________________________________________
_____________________________________________________________________________________________
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Special Interests and Talents
What does him/he like to do at home in his free time?
_____________________________________________________________________________________________
_____________________________________________________________________________________________
_____________________________________________________________________________________________
What are his favorite books, games, and television shows?
_____________________________________________________________________________________________
_____________________________________________________________________________________________
_____________________________________________________________________________________________
What is he really good at?
_____________________________________________________________________________________________
_____________________________________________________________________________________________
_____________________________________________________________________________________________
Development
Does him/he require any adaptive equipment?
_____________________________________________________________________________________________
_____________________________________________________________________________________________
_____________________________________________________________________________________________
What does he do when upset? What helps to calm him down?
_____________________________________________________________________________________________
_____________________________________________________________________________________________
_____________________________________________________________________________________________
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How does he communicate? Does he use words, pictures, or gestures? Does he use assistive technology for communication?
_____________________________________________________________________________________________
_____________________________________________________________________________________________
_____________________________________________________________________________________________
Does him/he need assistance when using the toilet?
_____________________________________________________________________________________________
_____________________________________________________________________________________________
_____________________________________________________________________________________________
Are there specific things that he needs help with (opening his lunch or blowing his nose)?
_____________________________________________________________________________________________
_____________________________________________________________________________________________
_____________________________________________________________________________________________
Safety
Does your him/he have allergies?
_____________________________________________________________________________________________
_____________________________________________________________________________________________
_____________________________________________________________________________________________
Does your child require a special diet? What are him/he preferred snacks and eating schedule?
_____________________________________________________________________________________________
_____________________________________________________________________________________________
_____________________________________________________________________________________________
Is the child a flight risk (i.e., does him/he run away)?
_____________________________________________________________________________________________
_____________________________________________________________________________________________
_____________________________________________________________________________________________
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TRAINING RESOURCE
Baseline Autism Quiz
By Sonia Dickson-Bracks
Name ________________________________________ Date____________

1. When a child receives a diagnosis of autism, he needs to meet diagnostic criteria in three areas.
What are the three areas?
1. sensory, behavior and language
2. communication/ language, social and behavior
3. language, social and special diets
4. language development, behaviors and sensory
2. What are the current statistics for the prevalence of autism spectrum disorders in the USA?
1. 1:150
2. 1:88
3. 1:166
3. When supporting a student with autism, what key areas will you need to address first in order to support
learning, social skills and independence?
• communication, organization and sensory
• behavior, learning and friendships
• social, play, academics
4. What is a Positive Behavior Support Plan?
• A plan that is put in place after a functional assessment is completed to address behaviors and
teach replacement strategies for those behaviors
• An intervention plan that is used to provide consequences for behaviors when they occur
• A system that all staff needs to follow and take data on
5. Why do some individuals with autism exhibit behaviors?
• because they are willful and stubborn
• because they often have challenges expressing their needs verbally so they use behavior to communicate
• because they are angry
• because they hate school and want to avoid all work
6. Sensory dysfunction is:
• a process by which you motor plan a movement
• challenges processing incoming sensory information that affects the your response to the environment
• hyposensitivity to smell
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7. ABA stands for:
• Autism Behavior Analysis
• Applied Behavioral Analysis
• Autism and Behavior and Advice
8. When supporting a student in the classroom, what is the staff’s primary role?
• helping the student to access the academics, socialize with peers and develop skills that will help him
manage the group/ classroom setting
• doing everything for the student and making sure he has everything he needs
• speaking for the student, staying next to him and never leaving his side
9. A schedule provides a student with autism with:
• a list of what he has to do in the exact order it’s written
• a visual representation of the day’s events that he must follow at all times
• a system by which he can organize himself, understand daily occurrences, be warned of unexpected changes,
and know the who, what, where of the day
10. What does ASD stand for?
• Autism, Symptoms and Disorder
• Autism Spectrum Disorder
• Autism, Solutions and Decisions
11. Why is autism described as a spectrum disorder?
• it covers a range of symptoms from mild to severe, and the symptoms present in each individual differently
• the spectrum is an overview of what autism may be
• it affects students of all races and ethnic backgrounds
12. If you had to define what you think autism is to someone who does not know, how would you describe it?
_____________________________________________________________________________________________
_____________________________________________________________________________________________
_____________________________________________________________________________________________
13. In the classroom it is your role to help support the student and also to help the student be part of the group.
How best do you think you can help the student you support?
_____________________________________________________________________________________________
_____________________________________________________________________________________________
_____________________________________________________________________________________________
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TRAINING RESOURCE
Sensory Processing Quiz
By Sonia Dickson-Bracks
Name ________________________________________ Date____________

1. List the five senses:
_____________________________________________________________________________________________
_____________________________________________________________________________________________
2. List the two “hidden senses”:
_____________________________________________________________________________________________
_____________________________________________________________________________________________
3. What is hypersensitivity?
a. under responsive to a sensation
b. senses running all around
c. over responsive to a sensation
4. What is hyposensitivity?
a. over responsive to sensory input
b. sensitive to everything
c. under responsive to sensory input
5. Tactile defensiveness is a condition in which:
a. an individual is extremely sensitive to touch, which may lead to misinformation or
behavioral responses regarding touch
b. an individual needs light touch and craves brushing
c. an individual likes to be brushed with a feather or withdraws from strong smells
6. The Vestibular System refers to:
a. structures within the inner ear
b. structures within the muscles and joints
c. structures within the chest cavity
7. Dysfunction within the vestibular system may manifest itself in two different ways. Some individuals may
be hypersensitive to vestibular stimulation and have fearful reactions to ordinary movement activities (e.g., swings,
slides, ramps, inclines) OR some may actively seek very intense sensory experiences such as excessive body whirling,
jumping, and/or spinning.
True False
8. Proprioceptive System refers to:
a. the system that provides the body with information about head position and ear ache
b. components of muscles, joints, and tendons that provide a person with a subconscious awareness of body position
9. What is sensory dysfunction?
_____________________________________________________________________________________________
_____________________________________________________________________________________________
38
TRAINING RESOURCE
Autism/Asperger Simulation Activity
By Lori Ernsperger, PhD
The following simulation activity is intended to be implemented with school teams to increase awareness and
understanding of students with autism. The activity takes 5-10 minutes and can be used with staff at any grade level,
or with peers from upper elementary and older. The steps for implementation include:
Prep Work:
1. Copy the following sheets on Pink, Blue, or White paper. If the paper says “Talk to the person with the Blue sheet”
that page should be on Pink paper and vice versa. The sensory sheet is copied on to white paper.
2. Cut the papers in half.
3. Collate the pages into sets of Pink/Blue/White. The number of sets is determined by the number of
participants. Each participant will receive one half-sheet of paper.
Activity:
1. Tell the group that they are going to do a fun interactive activity. Don’t share too much in the beginning.
Let them come to their own conclusions.
2. Have participants get into groups of 3, this activity does not work with groups of 2 or 4 people.
3. Hand-out the sets of Pink/Blue/White papers to each group. Each participant should take a half sheet of paper
and quickly review the instructions on their sheet only. Let participants know that they are not to read each
other’s paper.
4. After a few seconds, tell the groups to begin. The participants with the Pink/Blue sheets should quickly begin
talking about food.
5. The participants with the White sheets may need some encouragement to interrupt their colleagues to discuss
the sensory system. Walk around and encourage all participants to follow the directions exactly as they have on
their papers.
6. After two minutes, stop the group. Most groups will have uncovered the hidden meaning of this activity.
7. Discuss the hidden intent of this activity. Ask the following questions:
• What did it feel like to play your role in the group? Have the participants explain in one word how it felt, i.e.
awkward, lonely, annoying, uncomfortable, sad.
• Ask the participants with the White sheets if they observed the non-verbal cue their peers were using when
they were speaking. Did they observe the non-verbal cue?
• How was it different for the people with the Pink/Blue sheets vs. the person with the White sheet?
• Relate their experience to students with autism and their peers. How does this two-minute simulation
impact the educational experience of students with autism?
• Discuss the importance of teaching social skills to help to avoid these situations.
• Discuss the impact on bullying and depression for older students.
39
Participant #1: Please follow directions below.
1. Have a normal conversation with the person with the Blue sheet only.
2. Talk only about the following topic: Food, which includes-
• Favorite restaurants
• Best meals
• Recipes
• What did you have for dinner last night
3. The person who is speaking should clasp their hands in front of them when they are talking.
This non-verbal signal will indicate who is talking.
4. Carry-on a conversation for 3-5 minutes. Have fun!

1. Have a normal conversation with the person with the Blue sheet only.
• Best meals
• Recipes
40
1. Have a normal conversation with the person with the Pink sheet only.
• Best meals
• Recipes

1. Have a normal conversation with the person with the Pink sheet only.
• Best meals
• Recipes
41
1. Speak Directly to your group.
2. It is your responsibility to share with your group the following facts:
The Sensory System
Tactile System: located on the skin. This area has a density The function of the tactile system is to provide information
of cells distributed all over the body, which includes the mouth, about the environment and object qualities i.e. soft, sharp,
hands, and feet. dull, cold, hot.
Visual System: Located in the retina of the eye-stimulated Provides information about objects and persons. Helps us
by light define boundaries as we move through time and space.
Auditory System: Located in the inner ear and stimulated Provides information about sounds in the environment i.e.
by air/sound waves. loud, soft, low, near, far.
Gustatory System: The taste system is located on the tongue Provides information about different types of taste i.e. sour,
and closely related to smell bitter, salty, spicy, sweet.
Olfactory System: Located in the nasal structure. Provides information about different types of smells i.e.
musty, acrid, putrid, flowery, sweet.
3. It is extremely important that your group thoroughly understand the facts of the Sensory System.
So, please be bold in your attempts to share the information.

1. Speak Directly to your group.
2. It is your responsibility to share with your group the following facts:
The Sensory System
Tactile System: located on the skin. This area has a density The function of the tactile system is to provide information
of cells distributed all over the body, which includes the mouth, about the environment and object qualities i.e. soft, sharp,
hands, and feet. dull, cold, hot.
Visual System: Located in the retina of the eye-stimulated Provides information about objects and persons. Helps us
by light define boundaries as we move through time and space.
Auditory System: Located in the inner ear and stimulated Provides information about sounds in the environment i.e.
by air/sound waves. loud, soft, low, near, far.
Gustatory System: The taste system is located on the tongue Provides information about different types of taste i.e. sour,
and closely related to smell bitter, salty, spicy, sweet.
Olfactory System: Located in the nasal structure. Provides information about different types of smells i.e.
musty, acrid, putrid, flowery, sweet.
3. It is extremely important that your group thoroughly understand the facts of the Sensory System.
So, please be bold in your attempts to share the information.
42
People and
Places:
Creating an
Environment
for Success
People and Places:
Creating an Environment for Success
Goal: To show you how to make your program the best it can be
for incorporating youth with autism.
Understanding autism as well as the strengths and challenges of each participant with autism is
important for all staff and volunteers. Here are some things to consider when working with youth with autism in gen-
eral and in specific areas that might be part of your youth organization.
Tips for Staff and Volunteers Working

with Youth with Autism
Things for All Team Members to Keep in Mind
“Our son loved being at Camp Fire USA, I think we see the best in him in your programs, staffed with people
who are trained on his strengths and challenges and allow him to interact with other neurotypical kids.
All I can say is we loved it so much we want more!” - Joseph’s mom
Your team will need to be prepared to support participants with autism in a way that is beneficial both to them and to
the other participants. Planning, coordination, cooperation and supports are necessary to create a positive experience
for everyone. Expect to be successful, but also understand that you may need to adjust your definition of success
along the way. Remember to celebrate the small victories.
Strategies for Success

• Be calm and positive.
• Model appropriate behavior for the youth with autism, as well as the other program participants,
by greeting him and engaging in a respectful way.
• Situate the youth with autism for optimal attention to the group and learning activities.
• Be aware of sensory issues that may affect him.
• Provide written rules or pictures of expectations of behavior. People with autism often follow rules better when
they know why a rule exists.
• Use descriptive praise to build desired behavior. For example, “I like the way you put your trash in the trash can.”
44
• Give positive directions, minimizing the use of don’t and stop. By saying “Please sit in your seat” instead of
“Don’t stand up” you are clearly describing your expectations.
• It may be necessary to wait for a response to a question, use an alternative communication device or a
communication strategy such as picture exchange.
• Collaborate with the participant’s parents or aide to modify your curriculum or materials.
• Make sure that activities such as field trips, presentations, talent shows, plays or anything out of the
usual is discussed ahead of time. Think about ways to include them and discuss and plan with their
family and support team.
• Be aware of the vulnerability of youth with autism and the propensity for them to be victims of
bullying behaviors, especially in areas with little supervision.
Sports and Physical Activity

Strategies for Success
Many youth with autism are able to participate in sports and are a great
asset to their team. The amount of support required to make this happen
will vary greatly from person to person. Some people with autism have
great skills in learning rules and keeping track of statistics and may
make great scorekeepers or coach’s assistants. Some may be good at individual sports as they are not required to
keep track of a ball and other team members while processing auditory and visual information from several sources
at the same time.
• Be aware of motor, timing, language and attention issues that might affect his performance and
interest and make appropriate accommodations.
• Know that Echoing locker rooms, whistles and the sound of others running and shouting might be overwhelming
for someone with autism.
• Know that even though he may not be able to keep up with the pace of learning and the activity of the whole
group, he might still be able to learn components of a sport or activity that provides a valuable social outlet and
physical exercise.
• Break tasks into small components and celebrate successes.
• Promote as much independence as possible. For example, let him get the sport’s equipment. Teach him the
steps to warm up and cool down before playing.
• Practice and help troubleshoot skills outside of group practice time. Let him start getting ready five minutes before
the others arrive. Ask his support team to help teach techniques for learning to kick a ball, throw, catch, etc.
• Solicit the assistance of his and support team to provide training in appropriate locker room behavior and
social conventions regarding privacy.
• Help his peers support him, in a respectful way, in adhering to social conventions by modeling and/or
directly instructing.
45
Transportation Strategies for Success
Often part of the youth organization experience includes field trips or other activities where traveling on a bus
might be necessary. It may be necessary for a person with autism to be routed on a smaller bus and/or have an
aide assigned to ride the bus with them.
• Youth with autism may have impaired judgment, sensory issues or significant fears that might cause unexpected
behaviors – for example, a lack of respect for traffic may cause them to dart into the street or a dog on the sidewalk
might make them refuse to get off the bus. Know what to do to avoid or manage particular needs.
• Transitions are difficult for people with autism. This may result in some issues getting on to or off of the bus.
Be prepared for this.
• Visual schedules can be helpful for managing behavior. This is particularly important if he or she only rides
the bus periodically for field trips. Following is a generic example that could be created easily by using a digital
camera to take a picture of each step or action:
1. Wait for the bus doors to open.
2. Get on the bus.
3. Sit down.
4. Buckle my seat belt.
5. Ride quietly to school.
6. Get off the bus.
• Allow someone who may be overwhelmed by noise on the bus to use earplugs or music and headphones.
• Consider assigning peer buddies to support and shield a vulnerable youth from bullying.
Suggestions for When Behavior Problems or Incidents Occur

When a youth with autism exhibits maladaptive behavior that is seen as aggressive, dangerous or disruptive, it is
essential to remember that behavior is a means of communication, and not necessarily an overt desire to influence
or harm others. Here are some tips for staff on how to handle this if it occurs:
• Remain calm.
• Do not embarrass or reprimand the youth immediately and in the view of others.
• When addressing him, use limited verbal directions. Less can be more.
• Excessive talking and agitated adults can escalate a situation and overwhelm the participant. It can impede
his ability to understand and comply with directions or communicate to his best ability. A few minutes of quiet
followed by short, simple sentences will help everyone.
• Use established guidelines for communication, and be prepared to wait for a response.
46
• Give choices to help engage him and de-escalate his sense of being pushed around. For example,
“Would you like to talk about this outside or in my office?”
• Sending the message that you are working to understand his perspective and trying to figure out why he exhibited
the maladaptive behavior (and then following up by instituting appropriate supports and preventive measures)
may be more helpful to changing the behavior than instituting a consequence. Remember, the goal is to halt the
behavior and prevent it from occurring in the future.
• Obtain the facts from a variety of sources. Remember to gather information on behavior as well as what led up to
the behavior. It is especially important to take into consideration sensory issues that may not usually be considered.
Find out the consequences typically given for similar behaviors if they have occurred previously. Responses or
inadvertent rewards for maladaptive behaviors can increase, rather than reduce, them.
• Take care in interacting with his family, who generally dread reports of behavior issues. Be mindful of their
perspective and insights in working as a team to understand the underlying cause of the behavior and developing
a plan for promoting a positive replacement behavior.
Helping Peers Support Youth with Autism

“Abby loves the program and has even said that she wants to teach autism when she grows up.” – Abby’s Mom
Many youth have had little or no experience interacting with people on the autism spectrum. The best thing you can
do to support their understanding is to create an atmosphere of open communication about the issues that may concern
them. This type of atmosphere allows them to ask questions, get their curiosity satisfied, and can go a long way towards
alleviating fears and embarrassment.
It is important to communicate with the parents of the youth with autism before sensitivity training is done to make
sure what they are comfortable with in terms of disclosure. Some families may be comfortable with general training
and acknowledgement of their child’s strengths and challenges to the class, but not with sharing the autism diagnosis.
Other families are more open about their child’s diagnosis and are willing to be active participants in the education
and sensitivity training. These are personal decisions that each family must make.
It is also important to keep in mind that some families

may not have told their children about their diagnosis yet. Why Autism Awareness?
Some children may know they have autism but may not
want to share that information with their classmates. • Break down stereotypes
Again, these are individual decisions. The other consideration • Answer questions and satisfy curiosity
to discuss in advance is if the participant with autism will
• Reinforce the positive images and the
be present during the training.
strengths of people with autism
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Often a parent, caregiver or staff member who knows the youth with autism well can introduce him or her to other
program participants. Out of respect, a more specific introduction can also be done when he or she is not in the room.
It is important to present the participant as a person with unique abilities and similarities (a family, siblings, pets, love
of music, favorite foods, video games, movies, etc.) while also sharing some of the challenges and differences that
typical peers may notice or need to be aware of.
Bullying and Harassment

of Children with Autism Modeling Positive
Children with autism are especially vulnerable to bullying.
Interactions
The Interactive Autism Network (IAN) conducted a national Creating an environment of acceptance,
survey on the bullying experiences of children with autism modeling appropriate behavior, and
in 2011. The preliminary findings showed that 63% of the creating situations where youth with
1,167 children surveyed between the ages of 6 to 15 were
bullied at some point in their life.
autism can readily interact will actively
support inclusion.
Your organization should have a zero tolerance for bullying.
Creating a safe environment is necessary for participants
• Allow youth without disabilities to
to learn, grow and thrive. Celebrate when your participants look for solutions to problems and
show acts of kindness or social good. This isn’t just about for ways to enhance the participation
discipline and punishment – good anti-bullying practices of the youth with autism.
include reward and recognition for doing the right thing.
• Prompt positive interactions if they
Important Facts to Know are not occurring. (Example: “Joey,
I bet Albert would like to play that
About Bullying game with you.”)
• Youth with disabilities are much more likely to • When positive interactions occur,
be bullied than their non-disabled peers.
make sure to reinforce them.
• Bullying affects a child’s ability to learn.
• Bullying based on a youth’s disability may be • If either person gets off task or
considered harassment. isn’t behaving appropriately , redirect
• Disability harassment is a civil rights issue. their behavior.
• Students with disabilities have legal rights when • Step in if the situation is deteriorating.
they are the target of bullying. Sometimes a child will need to
• The adult response is important. It is never the be removed for a time to cool off.
responsibility of the child to fix the bullying situation.
• More than 50% of bullying situations stop when a
peer intervenes.
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Strategies for Dealing with Targets of Bullying
• Listen, be compassionate and use a calm voice.
• Provide as much privacy as possible.
• Take reports seriously and reassure participants that they were right to come to you and that you will
advocate for them.
• Decrease self-blame by identifying the bullying behaviors as wrong and unjustified.
• Be proactive in manipulating the classroom environment for success (for example, incorporating helpful peers).
• Look for cues that participants may need help developing social competence.
• Discuss whether other bullying has occurred.
• Continue to monitor behaviors and have a follow up conversation with the participant.
Strategies for Dealing with Kids who Bully

• Stay calm but use a firm, straightforward style.
• Provide as much privacy as possible.
• Give a brief, clear summary of the unacceptable behavior(s) and consequences, if appropriate.
• Note the behavior so a pattern can be established if behaviors continue.
• Do not get drawn into arguments or lengthy discussions.
• Correct the bully’s thinking errors (e.g., blaming the target).
• Identify the target’s emotions to help promote empathy.
• Consider other ways to help build empathy for the target (e.g., role-play incident with the bully taking
the target’s role).
• Re-channel the bully’s need for power into more positive, socially appropriate endeavors.
• Model respect and look for opportunities to pay attention to positive behaviors.
• Provide formative/pro-social consequences whenever possible (e.g., making amends).
• Take into consideration any exceptionalities and how they may impact bullying situations;
individualize strategies and responses accordingly.
Extracted from: Perfect Targets; Asperger Syndrome and Bullying; Practical Solutions for Surviving the Social World,
By Rebekah Heinrichs
49
Safety
Safety is a critical part of all of our lives, whether we are at home or out in the community, alone or with loved ones.
Being aware of our surroundings and taking precautions to stay safe is even more important for individuals with autism.
Some key issues to keep in mind for youth organizations:

• Wandering
Children with autism are known to wander or elope at a rate nearly four times higher than children without
autism. Make sure to discuss with parents their child’s wandering history and learn any particular triggers or
obsessions. If a child wanders from your program, you should call 911 IMMEDIATELY and notify parents of any
wandering incidents. Ensure that fences are gated and exterior doors are shut.
• Drowning
91% of wandering related deaths in the last three years were a result of accidental drowning. Youth with autism
in your care should know how to swim if there is an ungated pool or body of water in the area of your activities.
Make sure that youth with autism are properly supervised around water.
• Sexual Abuse
A study done in Nebraska of 55,000 children showed a child with any type of intellectual disability was four
times more likely to be sexually abused than a child without disabilities. While no specific numbers exist for
individuals with autism, research suggests that this population is extremely vulnerable. If a child with autism
discloses abuse, it is critical to stay calm, listen carefully, and NEVER blame the child. Thank the child for
telling you and reassure him or her of your support. If you know or suspect a child is being sexually abused,
please call the Childhelp National Child Abuse Hotline at 1.800.4.A.CHILD.
The Physical Environment

When creating a physical environment that is safe and comfortable for people with autism, it is important to keep in
mind that heightened sensory issues are one of the most common that will relate to their environment. Youth organizations
have a wide variety of places where learning and activities take place – from a classroom, to a playground, to out in
nature – it isn’t one size fits all. We’ve provided some general tips for environments that support youth with autism.
• Reduce Distractions
Many people with autism find it difficult to filter out background noise and visual information. A space without
too many distractions will decrease sensory overload and help the person with autism focus his attention on the
task at hand instead of other stimuli.
– Eliminate non-essential visual materials such as posters and signage.
– Block out distractions with window shades and screens.
– Declutter the room as much as possible.
– Avoid flickering and humming from fluorescent lighting.
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– Reduce the intensity of lighting by using fewer bulbs, natural light or lamps from home.
– Block out mechanical noises from heaters or fans as much as possible.
– Do not use room deodorizers or fragrances.
• Personal vs. Public Space
Because youth with autism have specific social challenges, providing some personal space is more of a
priority than for their typical peers.
– Space should allow for social interaction, but also provide a space where they can be separated from
the group to get their bearings.
– Create a soothing area where the person with autism can escape when they become overwhelmed –
or where they can watch the activities at a distance until they are comfortable enough to participate.
Reflect:
What are some of the things specific to your organization and programs that you think staff and
volunteers should be aware of when working with children with autism?
_____________________________________________________________________________________________
_____________________________________________________________________________________________
_____________________________________________________________________________________________
How can you support the non-disabled youth in your organization to accept and include youth with autism?
_____________________________________________________________________________________________
_____________________________________________________________________________________________
_____________________________________________________________________________________________
What are key safety issues to keep in mind for youth with autism as part of your program?
_____________________________________________________________________________________________
_____________________________________________________________________________________________
_____________________________________________________________________________________________
51
Resources:
Autism Internet Modules (AIM)
www.autisminternetmodules.org
Free interactive empirically based training modules on autism topics.
Presented in small increments with pre/post testing.
Dennis Debbaudt’s Autism Risk & Safety Management

www.autismriskmanagement.com
Information & Resources for Law Enforcement, First Responders, Parents, Educators and Care Providers
Out and About, Preparing Children with Autism Spectrum Disorders to Participate in Their Communities
By Jill Hudson, Amy Bixler Coffin (Autism Asperger Publishing Company, 2007)
Easy to read, practical explanations and examples of simple and effective strategies
Social Relationships and Peer Support, Second Edition

By Rachel Janney, Ph.D. and Martha E. Snell (Brookes Publishing, 2006)
With Open Arms; Creating School Communities of Support for Kids with Social Challenges Using Circle of Friends,
Extracurricular Activities, and Learning Teams
By Mary Schleider, M.S. (Autism Aspergers Publishing Company, 2007)
www.schoolswithopenarms.com
Gray’s Guide to Bullying (Spring 2004 Jenison Autism Journal)

By Carol Gray
www.thegraycenter.org
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How to Be a Friend to Someone with Autism
• Take the Initiative to Include Him or Her - Your
friend may desperately want to be included and may
not know how to ask. Be specific about what you want
him to do.
• Find Common Interests - It will be much easier to

talk about or share something you both like to do
(movies, sports, music, books, TV shows, etc.).
• Be Persistent and Patient - Remember that your

friend with autism may take more time to respond
than other people. It doesn’t necessarily mean he/him isn’t interested.
• Communicate Clearly - Speak at a reasonable speed and volume. It might be helpful to use short sentences.
Use gestures, pictures, and facial expressions to help communicate. Speak literally – do not use confusing figures
of speech (He may may truthfully tell you, “the sky” if you ask “What’s up?”)
• Stand Up For Him or Her - If you see someone teasing or bullying a friend with autism, take a stand and tell the
person that it’s not cool.
• Remember Sensory Sensitivity - Your friend may be very uncomfortable in certain situations or places
(crowds, noisy areas, etc.). Ask if he/him is OK. Sometimes your friend may need a break.
• Give Feedback - If your friend with autism is doing something inappropriate, it’s OK to tell him nicely.
Just be sure to also tell him what the right thing to do is because he may not know.
• Don’t Be Afraid - Your friend is just a kid like you who needs a little help. Accept he/him differences and
respect strengths just as you would for any friend.
Adapted, Peter Faustino, Ph.D.
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Books for Students with Autism, Siblings, Peers
A is for Autism, F is for Friend: A Kid’s Book for Making Friends with a Child Who Has Autism
By Joanna Keating-Velasco (Autism Asperger Publishing Company, 2007)
Different Like Me: My Book of Autism Heroes
By Jennifer Elder (Jessica Kingsley Publishers, 2006)
Do You Understand Me? My Life, My Thoughts, My Autism Spectrum Disorder
By Sofie Koborg Brosen (Jessica Kingsley Publishers, 2006)
Everybody is Different: A Book for Young People who have Brothers or Sisters with Autism
By Fiona Bleach (Autism Asperger Publishing Company, 2002)
Join In and Play (Learning to Get Along); Listen and Learn; etc.
By Cheri J. Meiners (Free Spirit Publishing, various)
www.freespirit.com
My Friend with Autism: A Coloring Book for Peers and Siblings
By Beverly Bishop (Future Horizons, 2003)
Taking Care of Myself: A Hygiene, Puberty and Personal Curriculum for Young People with Autism (Illustrated)
By Mary Wrobel (Future Horizons, 2003)
The Autism Acceptance Book; Being a Friend to Someone with Autism By Ellen Sabin
(Watering Can Press, 2006)
www.wateringcanpress.com
The Mind That’s Mine
By Melvin D. Levine, Carl Swartz, Melissa Wakely (All Kinds of Minds, 1997)
www.allkindsofminds.org
The Sixth Sense II
By Carol Gray (Future Horizons, 2002)
www.thegraycenter.org
The Social Skills Picture Book; Teaching Play, Emotion and Communication to Children with Autism
By Jed Baker, Ph.D. (Future Horizons, 2001)
www.jedbaker.com
The Social Skills Picture Book for High School and Beyond
By Dr. Jed Baker (Future Horizons, 2006)
www.jedbaker.com
Trevor, Trevor
By Diane-Twachtman-Cullen
www.starfishpress.com
What did you say? What did you mean? An illustrated guide to understanding metaphors
By Jude Welton (Jessica Kingsley Publishers, 2003)
Wings of Epoh
By Gerda Weissman Klein (FableVision/SARRC, 2008)
www.fablevision.com
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Emergency Information at a Glance
Autism Safety Project www.Autismsafetyproject.org
In case of emergency: Call 911 • Poison Control Center: 800-222-1222
Personal Information:
Family Name_____________________________________________________________________________
Address ________________________________________________________________________________
City____________________________________________________________________________________
State __________________________________________________________________________________
Zip ____________________________________________________________________________________
Home Phone _____________________________________________________________________________
Work Phone _____________________________________________________________________________
Mobile Phone ____________________________________________________________________________
Pager Number____________________________________________________________________________
Individual’s Name _________________________________________________________________________
Diagnosis _______________________________________________________________________________
Medical Diagnosis _________________________________________________________________________
Local Emergency Contact Information:
Name ______________________________________ Phone _____________________________________
Name ______________________________________ Phone _____________________________________
Name ______________________________________ Phone _____________________________________
Primary Care Physican:
Name ______________________________________ Phone _____________________________________
Insurance:
Policy ______________________________________ Group # ____________________________________
Activity Schedule Special Instructions:
_____________________________________________________________________________________________
_____________________________________________________________________________________________
Other Important Information:
_____________________________________________________________________________________________
_____________________________________________________________________________________________
*Display this form in a handy place for caregivers and others who may need emergency information.
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Strategies
for Success:
Supporting
Learning and
Growth in
Youth with Autism
Strategies for Success:
Supporting Learning and
Growth in Youth with Autism
Goal: To people with autism, by definition of their diagnosis, have difficulties with communication
and socialization. This section provides basic suggestions for dealing with these challenges
in a youth organization environment.
Communication
Communication encompasses a broad range of challenges for people with autism, from intake and processing
of information, verbal or representational output, to reading and writing skills. Picking up on non-verbal cues, body
language and subtle intent, intonation and interpretation is also difficult for people with autism.
Tips for Receptive Language:

Supporting Receptive To understand what is said or written.
Language Skills
• Make sure you have the youth’s attention before you deliver an instruction or ask a question.
• Consider the participant’s processing challenges and timing. For example, begin an instruction
with the participant’s name – this increases the likelihood that he will be focused on what you
are saying by the time you deliver the direction.
• Avoid complex verbal directions, information or discussions. Keep instructions short and
give information in chunks.
• Minimize the use of don’t and stop. Fox example, “Please stay on the sidewalk,” is much more
effective than “Keep off the grass,” because you are being clear about the behavior you desire.
• Be prepared to wait for a response – whether it is an action of an answer. Avoid immediately
repeating the instruction or inquiry. Think of it like a computer – when it is processing, hitting the
command again does not make it go any faster, but rather causes it to freeze or sends it back to
the beginning to start the process all over again.
• Supplement verbal information with pictures, visual schedules, gestures, or written directions.
• Do not reprimand a participant for not listening or responding. That only serves to highlight his
or her challenges.
57
Tips for Supporting Expressive Language:
Expressive Language Spoken language and communicative
• Take responsibility for finding a way to access output such as written language and
the participant’s need for communication. picture exchange.
Many people with autism have word retrieval
issues – even if they know an answer, they
may not be able to come up with the words.
Offer visual supports, cue cards, or multiple-
choice answers.
• Support the youth in saying “I don’t know” to
reduce the anxiety associated with not being
able to answer a question.
• Add visual supports to the environment as
necessary.
• If the youth has an augmentative or alternative
communication device, learn how to use it.
Ask parents or the support team for help.
• Sing! Musical processing occurs separately
from language processing, and singing
can be used to promote both receptive and
expressive skills.
• Be aware of echolalia, where someone with autism repeats phrases he has heard before.
Sometimes this is a seemingly self-stimulatory behavior, but many people with autism also use
functional echolalia to comment, inform or request.
• Many people with autism have a favorite topic or special area of interest that may interfere with
social interaction. To shape their expectations and minimize the impact of the obsession:
– Provide scheduled opportunities to discuss the topic.
– Establish boundaries on when and where it is appropriate to discuss the topic.
– Set a timer to establish duration.
– Reinforce the participant for talking about other subjects or the absence of the topic.
Social Interaction
People with autism often have the desire to interact with others, but they do not have the skills to engage appropriately
or may be overwhelmed by the process. Some youth are painfully aware of their social deficits and will avoid interactions
even though they may want to connect with others. Or they could go in the opposite direction and engage in attention
seeking behavior to connect with others until they build the skills they need to interact. Social challenges in autism go
both ways. They may manifest as deficits (a lack of social initiation) or excesses (a one-sided conversation in a highly
verbal youth with Asperger’s Syndrome).
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Tips for Supporting Social Interaction
• Extend a feeling of welcome and model for other participants that the youth with autism is a
valued part of the group.
• Get to know the youth with autism and meet him where he currently is in terms of social skills
and interests.
• Be aware that free play or other unstructured times are the most difficult for people with autism.
Think about how to impose some structure on these activities.
• People with autism often have a difficult time maintaining eye contact. Insisting on eye contact can
cause additional stress.
• Youth with autism, especially those who are more verbal, can be the target of teasing and bullying.
They often do not pick up on non-verbal cues such as tone of voice or the hidden intention of a
request or comment. They often go along with the teasing or bullying because they do not identify
that it has a negative intent. The desire to make friends and their difficulty doing so, means they
often encounter peers with negative intentions. Be on the lookout for this and respond quickly if
teasing/bullying becomes an issue.
• Many people with autism are very logical and will always play according to the rules. If the rule is
that basketballs are not allowed outside at a particular time, a participant may become agitated
if they come out for a special activity. Similarly, he may not understand special circumstances in
game play such as penalty shots, and his insistence on following the rules he has learned could
become problematic.
• Identify peers who model strong social skills and pair the youth with autism with them. Provide
peers with strategies for eliciting communication, but be careful not to turn the peer into a teacher.
Strive to keep peer interactions as natural as possible.
• During group activities, define his role
and responsibilities within the group.
Assign a role or help him mediate with
peers as to what he should do. Rotate
roles to build flexibility and broaden skills.
• If you leave it up to the group to
pick partners, youth with autism
are sometime chosen last, causing
unnecessary humiliation.
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Challenging Behaviors
Sometimes the difficulties of autism can lead to behaviors that are quite challenging to understand and address. Here
are some tips that can be helpful in preventing negative behaviors:
• Recognize behavior as communication. Try to understand the communicative intent of the behavior.
• Catch him being good and reward the behavior!
• Provide organization and support transitions.
• Communicate expectations, use short-term schedules, warn of changes to routine or personnel,
and prepare them for unexpected events.
• Offer choices and provide some sense of control.
• Consider sensory needs and interventions.
• Respect her personal space.
• Provide a home base or safe place where he can feel safe and regroup, calm down, or escape
overwhelming situations and sensory overload.
• Be flexible.
• Be aware of and work to avoid known triggers that may result in frustration, overload or anxiety.
Make a list and share it with the team.
• While they are occurring, ignore attention-seeking behaviors as much as possible. Redirect instead.
Sensory Stimulation
Sensory challenges can affect people with autism’s ability to take in information, respond to requests, participate in
social situations and maintain calm. Either through internal imbalances or in response to the environment, the sen-
sory and emotional regulation of a person with autism can become overwhelmed and result in anxiety and stress.
Working to maintain a modulated state can help the youth remain calm and focused.
Ways to support sensory needs:

• Be aware of sensory issues and alter the environment where possible, such as minimizing exposure to loud noise.
• Some people with autism find standing too close to others difficult. This needs to be addressed when deciding
where to place a participant in line or other area among a group of people.
• People with autism may have difficulty looking and listening at the same time.
• Highly decorated areas can be over stimulating and distracting for some people with autism.
• Some people with autism may need to transition earlier than other participants or may need a few minutes
to unwind after being in a noisy environment.
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Reflect:
There are many things to think about when working with youth with autism. What do you think
are the things that will be the easiest and most difficult to incorporate when it comes to your specific
organization or program?
With communication:
_____________________________________________________________________________________________
_____________________________________________________________________________________________
_____________________________________________________________________________________________
With sensory issues:

_____________________________________________________________________________________________
_____________________________________________________________________________________________
_____________________________________________________________________________________________
With behavior challenges:

_____________________________________________________________________________________________
_____________________________________________________________________________________________
_____________________________________________________________________________________________
Resources
Association for Positive Behavior Support
Research information, application strategies, information on school-wide PBS programs, fact sheet
summaries of PBS practices and a section on autism.
www.apbs.org
Do2Learn
Easy to use and downloadable resources including social games, organizational tools, picture cards, etc.
www.do2learn.com
Kansas Autism Spectrum Disorders
Free examples and banks of visual strategies, social narratives and power cards, and podcasts of speakers such as
Linda Hodgdon and Paula Kluth.
http://kansasasd.com
Solving Behavior Problems in Autism
By Linda Hodgdon (Quirk Roberts Publishing, 1999)
www.usevisualstrategies.com
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Presuming Intellect: Ten Ways to Enrich Our Relationships
Through a Belief in Competence
By William Stillman
1. Don’t define people by their diagnosis. Remember playing tag? Nobody wanted to be IT. And if you were IT, you
wanted to get rid of IT because being IT was stigmatizing, a detriment, and something undesirable — that was the
game; being IT was to be avoided and feared. Remaining IT longer than we’d like becomes challenging to catch up to
the others, to belong, and to feel accepted. When we define someone by their diagnosis, our perception of them may
become something to be dreaded: someone defective, someone who has the IT with which we don’t wish to risk an
association of any sort. For that person, this attitude is the lubricant that greases the wheel for the vicious cycle of a
selffulfilling prophecy. That is, when people define you as having IT and that’s all you know of yourself, you will reflect
back precisely what others project upon you. This is a natural and defensive reaction; and if you don’t speak or can’t
articulate your feelings, your outpourings of “behaviors” will only further validate the diagnosis (hence the vicious cycle).
2. Shatter myths and stereotypes. Clinical diagnosis is but a framework for explaining “behaviors” or atypical
attributes. This may include judgments about severe intellectual and physical limitations, and further speculation
about other incapacities. It can also set a negative precedent of using “us and them” language in labeling someone
as different, retarded, autistic or mentally unstable. However, it wasn’t so long ago that persons who were epileptic,
homosexual, or even those lefthanded, were labeled as mentally deviant. This led to unfair, inaccurate and unjust
myths and stereotypes. All of psychology and psychiatry is educated guesswork; no single clinician can state with
absolute authority what someone experiences in the way that medical science usually can. In considering three
factors, insight, foresight and hindsight, we need to encourage others and ourselves to look beyond our history of
deficitbased labeling in favor of perceiving a person’s humanity—regardless of their diagnosis or way of being.
The label which may perpetuate clinical myths and stereotypes is an incomplete truth; it should be but one point of
reference in fully supporting the whole person.
3. Don’t talk about people in front of them. Have you ever been in conversation with two or more people and
someone talks out of turn, interrupting, belittling or disputing your contributions? Or have you temporarily lost the use
of your voice as others tried to interpret your wants and needs? How did either instance make you feel? If we don’t
value what people have to offer, especially if they are unable to speak at all, we send a message of superiority versus
inferiority. When we define people by their diagnosis and perpetuate myths and stereotypes, we presume the authority
to talk about them in front of them as an entitlement. After all, it shouldn’t matter if we share information about someone’s
“behaviors” with their parents, doctors, and others in front of them because they are retarded, autistic, and unaware —
right? Wrong! Presuming intellect requires us to believe an individual’s intellectual competence is intact. This means
we do not speak about them in front of them in ways that are hurtful, embarrassing or humiliating. We must also gently
but firmly advocate by disallowing others from doing it as well. We need to include people in conversation by directing
questions to them not about and around them. It also means we employ person-first language (boy with autism, not
autistic boy) because it compels us to be conscious of the words we use when discussing someone. So, before you
speak, ask yourself if you would welcome someone talking about you in precisely the same way without a voice to
defend yourself. We cannot have a mutually respectful and trusting relationship if we talk about someone in front of them.
62
4. Interpret “behavior” as communication. Have you ever been so angered that words escaped you in the moment,
and the only way you could express yourself was by screaming or throwing something? You probably felt justified in
your actions because it was the only way you could vent your expression of extreme upset. But what would life be
like if you could never retrieve the words you wanted when you needed them and you always seemed to be grappling
with overwhelming or frustrating circumstances that caused you to react in extreme ways as the only option? In the
same way you could rationalize your own behavior, let’s remember that we all have good reasons for doing what we’re
doing, and we’re doing the best we know how to do in the moment. You wouldn’t want to be defined or stereotyped
by the times you just had to yell and shout would you? We need to extend the same courtesy to others by not jumping to
conclusions about their “behaviors” as willful misconduct, noncompliance, or “attention seeking.” You may respectfully
deconstruct “behavior” in terms of communication by appreciating the following three reasons why people may
engage in what others call “acting out” or “aggressive behaviors.” 1) The inability to communicate in ways that
are effective, reliable and universally understandable. 2) The inability to communicate one’s own physical pain and
discomfort in ways that are effective, reliable and universally understandable. 3) And the inability to communicate
one’s own mental health experience in ways that are effective reliable and universally understandable.
5. Offer communication enhancements and options. We have become a culture that values instantaneous, rapid-fire
response to our need for information. This includes the immediacy with which we communicate to one another
through e-mail, instant messaging, text messaging, and round-the-clock accessibility via cellular telephones. When
others do not communicate with us on par with the manner with which we’ve become accustomed, we may lose
patience, become bored or distracted, or dismiss their communication attempts altogether. This may be especially
true of those challenged in articulating language such as small children, the elderly, and those with a neurological
difference resulting from stroke, Tourette’s, Alzheimer’s, Cerebral Palsy or autism. We may wrongly interpret the
inability of others to speak as quickly as we’d like as an incapacity when, in fact, most often just sensitively allowing
for process time beyond what is standard is all that is required for those individuals to cognitively retrieve spoken
language. In providing support to others, we must acknowledge that not everyone is neurologically “wired” for verbal
communication; this is not the same as not having something to say. It is unacceptable to accept that because someone
doesn’t speak, there’s nothing we can or should do. There are myriad communication options and opportunities to
offer as speech alternatives. These may include pointing to “yes” and “no”; some basic sign language; photographs
and symbols; computers and other keyboards; and technology of all kinds. The person will guide us to the device, or
combination thereof, that makes sense for her. Engaging in conversation by discussing someone’s most passionate
of interests in the context of a mutually-pleasing relationship is a great incentive to entice someone into trying a
communication alternative that is new and different. Honoring another’s communication requires us to acknowledge
that we might not like what we hear.
6. Offer age-appropriate life opportunities. When we are unpresuming of an individual’s intellect, there is a belief
that the individual likely possesses a juvenile aptitude, childish thought processes, and skills on par with someone
who is chronologically much younger. This stereotype of the “perpetual child” leads some to interact with the stigmatized
individual in ways that are pretentious, patronizing, and insulting. It also means that we limit the life opportunities that
we offer someone in favor of preserving the “perpetual child” mindset. Instead, we provide adolescents, adults, and
63
even persons who are elderly, with dolls and toys, and reading and viewing material suited and intended for very
young children.You can only know what you know; and if someone is only ever afforded such opportunities, a childlike
affect persists and permeates our interactions. But, if we presume intellect and acknowledge that an individual’s
“behaviors” might really be cries of boredom or offense with educational curriculum, vocational options, or recreational
activities that are dehumanizing, we will know better how to partner with an individual in planning age-appropriate
learning, work and freetime opportunities. The greatest obstacle to implementing this is our own attitude in how we
perceive supporting someone with a different way of being.
7. Make compassionate accommodations. Have you ever been trying to read or listen attentively to something,
and someone near you is constantly coughing? You can react one of two ways: either with annoyance, or with
consideration. Reacting with annoyance will only foster bad feelings between both parties; you may feel as if the
person should know to be more socially considerate, and the person, who may be struggling to care for themselves,
may feel hurt or attacked. Reacting with consideration may include gently approaching the individual to offer them a
cup of water, a mint or lozenge, or to simply commiserate about a human experience we’ve all endured at one time
or another. Responding with the latter approach requires discounting initial impressions and making a compassionate
accommodation, not only in our thoughts but in our deeds. In considering compassionate accommodations for the
individual with a different way of being, think in terms of prevention instead of intervention. Prevention means knowing
fully what an individual requires in advance of a situation, environment, or activity in order to feel safe and comfortable
and able to participate. This relates to the ability to think, communicate, motor-plan movement, and assimilate with
the senses. It means foregoing the antiquated model of multiple, overwhelming community integrations (which
often sets the overloaded individual up for an intervention) in favor of simple, subtle, and interest-based activities in
a qualitative relationship context.
8. Respect personal space and touch. If we perceive someone in our care to be less than equal, be it a child, adult
or someone elderly, we seem to take ownership of touching their physical being with a sense of entitlement in order to
gratify our own needs. For example, instead of allowing someone the time required to bathe, eat or dress for themselves,
we may grow impatient and begin handling them ourselves to “get the job done.” Or, in desiring to be affirmed, we
initiate physical touch by embracing, back-rubbing or hair-tousling—all of which may be intrusive, unwelcomed
and without permission. (In recent years, some colleges have even implemented “touch protocols” for dating
co-eds to avoid misinterpretation of any sexual intent.) Conversely, many of us are extremely uncomfortable brushing
against others in the cramped quarters of an airplane, bus, subway, or train. Personal space and touch are a matter of
individualized perception for each of us based upon our culture, upbringing, and relationship experiences. A friendly
slap on the back, which you’ve been conditioned to convey as communicating “hello,” may send shock waves through
the nervous system of the recipient. Instead, respectfully await the invitation in. Await the acknowledgment that coming
closer, touching, even eye gazing, is welcomed once it’s communicated by the person with whom you are developing
a relationship. The invitation in may be as subtle as someone who rarely makes eye contact locking eyes with you
and tracking your movement, or the individual who carefully, gently, extends a finger to initiate touching you. Be very
mindful of the mixed messages we send to children whom we routinely embrace and then confuse once we define
such as “inappropriate” come adolescence. It is also fair to state your own acceptable preferences for touch limitations.
64
9. Seek viable employment for others. The system that serves people with different ways of being endeavors to be
altruistic and well-intentioned but it is an industry nonetheless; one that, in seeking viable employment opportunities
for its clients, attempts to conjoin with mainstream industries that may be unpresuming of intellect. More often than
not, this translates to menial tasks that are believed to require no thought: adult training facilities, repetitive factory
work, janitorial cleanup, emptying trash receptacles, or replenishing the fast-food salad bar to name a few. For
most others, such jobs are temporary steppingstones; but for persons who are perceived as largely incapable, these
employments have become a norm that perpetuates stereotypes. In seeking to pursue viable employment, we need
to think in terms of cultivating gifts, strengths, and talent areas as early on in one’s life as possible. Begin by identifying
an individual’s most passionate of interests—those subjects or topics for which she wants most to talk about, watch,
draw or write, reenact, engage with, and read about. When we value passions instead of labeling them as obsessions
(unless they seriously impair one’s quality of life), we are better poised to creatively envision a blueprint of possibilities
for one’s future. This may include higher education, virtual employment via the Internet, or self-employment opportunities.
10. Acknowledge that we are all more alike than different.

Remember the last time you drove somewhere and, upon
arriving, had no recollection of the drive? How about when
you hear a song you haven’t heard since high school, and
memories you associate exclusively with that era come
flooding back? Or what about the times you’ve halted,
blocked, stuttered or stammered over calling up someone’s
name? These are examples of common neurological blips,
misfires and disconnects that make us all kindred in our
humanity. While others may have traits that appear more
exaggerated, like physically rocking or handflapping, you
may catch yourself engaging in a similar action if you’ve
been shaking your leg, tapping a pen, or twirling your hair
or a piece of jewelry. When we embrace the philosophy of presuming intellect we are in a position to become agents
of transformation. Doing so requires forgiveness of our own ignorance—which need not hold negative connotations —
as well as seeking the forgiveness of others whom we have not held in the same regard as our typical peers. We
have become a culture that elevates perfectionism to exalted heights, which is an unrealistic and potentially damaging
aspiration. When we acknowledge the kinship we share with one another, we are most apt to value diversity in our lives
within the context of mutual respect, co-collaboration for greater good, and the presumption of intellect.
Content © 2007, William Stillman

www.williamstillman.com
65
Have more questions or need assistance?
Please contact the Autism Response Team for
information, resources and tools.
TOLL FREE: 888-AUTISM2 (288-4762)

EN ESPAÑOL: 888-772-9050
Email: FAMILYSERVICES@AUTISMSPEAKS.ORG
WWW.AUTISMSPEAKS.ORG

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Leading the Way

Autism-Friendly Youth Organization Guide

About Autism: What You Need to Know ................................................................... 6 – 14

Inclusion: Leading the Way in Access for Everyone ............................................. 16 – 23

Getting Started: Leading the Way to an

People and Places: Creating an Environment for Success .................................. 44 – 55

Strategies for Success:

About Autism Speaks

Dr. Nathan A. Schaumleffel, CPRP, CNP, CFRM, IYD

Marianne Sullivan, RN, MN

What’s Different About

Tips for Communication with

Other issues that often accompany autism:

visit www.disabilityisnatural.com to see the complete article.

Say: Instead of:

Keep thinking—there are many other descriptors we need to change!

Excerpted from Kathie’s People First Language article, available at www.disabilityisnatural.com.

Inclusion in Community Programs Means...

Why is Inclusion Important?

Inclusion Works to the Benefit of All

Did You Know:

What Does ADA Cover?

Tips: A Successful Inclusion Program

How do you think inclusion benefits:

Youth with autism and their families?

Other non-disabled participants in your organization?

Staff and volunteers?

Kids Together Inc.

Americans with Disabilities Act (ADA) Information

Do your materials (print and web) include an

Does your registration process include a question related to

Does staff know how to respond to requests for

Is program staff trained to use, arrange for or produce materials in

Do you promote and market your accessibility to

Creativity and Flexibility: Always Usually ½ the Time Seldom Never

Do relevant staff and/or volunteers have the skills and commitment

When designing program activities, are multiple learning styles

Do program participants have flexible and alternative opportunities

Are staff and/or volunteers sensitive to sensory issues participants may

Are participants allowed adequate time to learn a

Are staff and/or volunteers trained in person-first

Are rules and directions (and, where applicable, rewards and

Are pictures, gestures and role modeling used to ensure that

Are participants encouraged to demonstrate their understanding of

Promoting Social Skills: Always Usually ½ the Time Seldom Never

Are all participants held to the same expectations with regard to

Do staff and/or volunteers recognize the unique skills, talents

Do staff and/or volunteers work to engage participants socially

Do staff and/or volunteers model respect for diversity

Are staff and/or volunteers careful not to single out or

Are relevant staff and/or volunteers trained on how to coach

Are relevant staff and/or volunteers trained to respond appropriately

Are relevant staff trained in positive behavior modification/

Are staff and/or volunteers offered disability etiquette training at

Are parents of youth with disabilities encouraged to strategize

Are staff and/or volunteers encouraged and provided tools to gather

Are mechanisms in place to monitor the program’s success

Does your organization have a financial plan to reasonably

Human Resources: Always Usually ½ the Time Seldom Never

Name ____________________________ Date

Name ____________________________ Date