Success through Self Advocacy and Disclosure for People on the Autism Spectrum Alaska Autism Resourc

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Success through Self Advocacy and Disclosure
for People on the Autism Spectrum Alaska
Autism Resource Center National Autism
Awareness Month Live from Boston, MA April
09, 2007 PRESENTED BYStephen M. Shore
Tumbalaika_at_AOL.COMwww.AutismAsperger.net
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INTRODUCTION AND A LITTLE BIT ABOUT ME
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LIVING WITH ASD SELF-ADVOCACY AND DISCLOSURE
Introduction
The Autism Bomb
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DIAGNOSTIC AND STATISTICAL MANUAL OF
MENTAL DISORDERS IV-TR American Psychiatric
2000 Association
Reframe Communication Socialization Restrict
ed Interests
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T H E A U T I S M S P E C T R U M
Severe Moderate Light
Kanners PDD-NOS HFA/AS
Rosenn, D. (1997). Rosenn wedge. From
Aspergers What we have learned in the 90s
conference in Westboro, MA. Used with permission
T w i c e E x c e p t i o n a l i t y
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S U C C E S S W I T H A U T I
S M
A CLOSER LOOK AT MY PLACEMENT ON THE AUTISM
SPECTRUM ADULT
College More friends Dating Others really do
think differently Utopia!
Finishing doctoral dissertation on comparative
educational approaches for engendering success
for people with autism and Asperger Syndrome
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I N N E R A N D O U T E R S E N S E S
S E N S O R Y V I O L A T I O N
S
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CHARACTERISTICS OF CHILDREN WITH AUTISM SPECTRUM
CONDITIONS
Overly sensitive to loud noises
Difficulty with hair washing and brushing
Problems with handwriting
Bumps into people in line
Picky eater
Clumsy
Always on the go
Only likes certain types of clothing
Difficulty paying attention
Adapted from Myles, Cook, Miller, Rinner
Robbins. (2000). Asperger Syndrome and sensory
issues Practical solutions for making sense of
the world. Shawnee Mission, KS Autism Asperger
Publishing. P. 5.
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A CLOSER LOOK AT MY PLACEMENT ON THE AUTISM
SPECTRUM 4
Enter Putnam Condition improves to neurotic The
wonderful world of watch motors Echolalia and
return of speech Eating baby food
Self Awareness
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S U C C E S S W I T H A U T I
S M
Set the Stage for Self-Determination
Condition improves to neurotic The wonderful
world of watch motors
Self Awareness
Which Sets the Stage for Disclosure
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A CLOSER LOOK AT MY PLACEMENT ON THE AUTISM
SPECTRUM 6
Kindergarten Social academic
difficulties Discovered making a mess of myself
while eating BBQ chicken wings Loved cats but
dogs Yikes bikes!
Disclosure
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DISCLOSURE FOR PEOPLE WITH AUTISM
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D I S C L O S U R E
The issue of disclosure begins As soon as it
is known that a person has a difference in their
way of being
WHY?
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C H A L L E N G E
What about the Autism Spectrum makes
it particularly challenging
to disclose?
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F O U R S T E P S T O D I S C LO S U
R E
Self-Determination gt Disclosure gt Self-Advocacy
1. Make the child aware of their strengths and
challenges through verbal, pictorial, and other
communication.
4. Present the label summarizing a condition
rather then a name for a set of deficits.
5. Making ones needs known in a way that others
can understand and comply hopefully in a
proactive manner.
2. Rack up strengths and challenges.
3. Non-judgementally compare characteristic with
other role models.
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S P E C I A L I N T E R
E S T S
An interest of such great intensity that it
interferes with daily functioning1.
S O M E S P E C I A L I N T E R E S T S2
airplanes astronomy bicycles earthquakes medicine
chemistry mechanics electricity electronics comput
ers hardware tools psychology music rocks geology
geography locks cats dinosaurs watches shiatsu yog
a autism
1. Attwood, A. (1998). Aspergers Syndrome.
London Jessica Kingsley Publishers. 2. Shore, S.
(2001). Beyond the wall Personal experiences
with autism and Asperger Syndrome. Shawnee
Mission, KS Autism Asperger Publishing Company.
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SELF-ADVOCACY FOR PEOPLE WITH AUTISM
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S E L F - A D V O C A C Y D E F
I N E D
Self-advocacy involves knowing when and how to
approach others in order to negotiate desired
goals, and in order to build better mutual
understanding, fulfillment, and productivity.
Successful self-advocacy often involves an
amount of disclosure about oneself that carries
some degree of risk, in order to reach a
subsequent goal of better mutual understanding.
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LIVING IN TODAYS WORLD
REALITY CHECK Most people are busy with
living Most people are not in the mindset
ofaccommodating people with differences
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AGES OF TRANSITION
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A CLOSER LOOK AT MY PLACEMENT ON THE AUTISM
SPECTRUM 13
Middle and high school Finally getting it
together but still often in left
field Discovering the band room Time to focus
more on people and not their bicycles
Interests, Relationships Community
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Self-Initiated Individual Education Plan (Cont.)
Who must we get on board? Student - Students
Guide to the IEP - Helping Students Develop
Their IEP www.nichcy.org Parents Special
Education Teacher Regular Education
Teacher(s) Administrators Others
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Self-Initiated Individual Education Plan (Cont.)
Adapted from McGahee et al. (2001). Student-led
IEPs A guide for student involvement. Arlington,
VA Council for Exceptional Children in Shore
(Ed). (2004) Ask and tell Self-advocacy and
disclosure for people on the autism spectrum.
Shawnee Mission, KS Autism Asperger Publishing
Company. P. 91.
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Self-Initiated Individual Education Plan (Cont.)
Recreation and Leisure
Home/Independent Living
Community Involvement/Volunteer Work
Postsecondary Education/Training
Adapted from Shore (Ed). (2004). Ask and tell
Self-advocacy and disclosure for people on the
autism spectrum. Shawnee Mission, KS Autism
Asperger Publishing Company. P. 92.
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SIX STAGES TO SELF-ADVOCACY
1. Planning and Modeling After involvement with
the planning for their own self-advocacy, the
person observes the partner engage in the act of
advocating.
2. Facilitation and Confidence Building Facilitat
or serves as a guide for the self-advocacy
process and remains ready to step in as needed.
Adapted from Sibley, K. Help me help myself. in
Stephen Shore (ed.). Ask and tell Self-advocacy
and disclosure for people on the autism spectrum.
Shawnee Mission, KS Autism Asperger Publishing
Company.P. 35.
3. Partnering and Letter Writing Equal sharing
of advocacy responsibilities. Advocate takes the
lead as facilitator offers strong guidance, moral
support while the person does most of the
advocating. Letter writing.
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Self-Initiated Individual Education Plan
To my IEP Team, I like the way Mr. Dowd teaches
math. He makes it fun and easy for me. Mrs.
Sugarmans English class is very difficult. I
dont understand when she diagrams sentences on
the board and the scratching of the student
pencils during writing time makes it very hard
for me to concentrate. Truly yours, Joey
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SIX STAGES TO SELF-ADVOCACY
4. Moral Support Partner continues to assist
with the preparation. The advocate does most of
the talking with the partner nearby to assist if
needed.
5. Taking the Lead The advocate leads the
entire process with assistance from the
facilitator but only under the self-advocates
direction.
Adapted from Sibley, K. Help me help myself. in
Stephen Shore (ed.). Ask and tell Self-advocacy
and disclosure for people on the autism spectrum.
Shawnee Mission, KS Autism Asperger Publishing
Company.P. 35.
6. Independent Self-Advocacy The advocate
undertakes all the preparation, presentation, and
evaluation in a completely independent manner.
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Helping a Samantha Advocate for Herself - Case
Study
Six Stages of Self-Advocacy
A 13-year old student in an inclusive classroom,
Samantha has been coming home crying for the past
week. Through discussion with Samantha and
classroom observation you see that some of
students take great fun in watching Samantha
squirm as they lightly touch her in apparent hope
that Samantha will eventually strike out and get
blamed for starting a fight. Previously, you
would have intervened by talking with Samanthas
homeroom teacher about how others are taking
advantage of her tactile hypersensitivity. As
part of Samanthas team you realize that it is
time to work on self-advocacy.
Choose one of the six stages of self advocacy
and A. describe how you will prepare Samantha
for her self- advocacy effort, and,
B. describe what the actual self- advocacy
effort will look like.

• Six Stages of Self-Advocacy
• Planning and modeling
• Facilitation and confidence building
• Partnering and letter writing
• Moral support
• Taking the lead
• Independent self-advocacy

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A CLOSER LOOK AT MY PLACEMENT ON THE AUTISM
SPECTRUM 19
College More friends Dating Others really do
think differently Utopia!
Paradigm shift from being advocated for to
advocating for ones self
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THE ADULT YEARS
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Helping Dot Advocate for Herself - Case Study
Six Stages of Self-Advocacy
Having just been moved from barely tolerable
distraction of a shared office space to a cubicle
of her own, 16-year old Dot is very proud of her
new digs. However she quickly realizes the
productive work will be impossible for her due to
her fluorescent light sensitivity. Her
supervisor, while impressed with her work, does
not know that Dot has Asperger Syndrome and with
it a sensitivity to fluorescent lights. As part
of Dots team you realize that it is time for her
to work on self-advocacy.
Choose one of the six stages of self advocacy
and 1. describe how you will prepare Dot for
her self-advocacy effort, and, 2. describe
what the actual self- advocacy effort will look
like.

• Six Stages of Self-Advocacy
• Planning and modeling
• Facilitation and confidence building
• Partnering and letter writing
• Moral support
• Taking the lead
• Independent self-advocacy

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DONT LET THIS HAPPEN
Special Education is ALL DONE!! I want to be just
like EVERYONE ELSE OOPS!!!!!! Well Maybe I DO
need to find the Office of Student Support
Paradigm Shift From Being Advocated for to
Self-Advocacy
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SOME STEPS FOR A SUCCESSFUL COLLEGE EXPERIENCE
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M a k i n g C o l l e g e R i g h t (Cont.)
Preparation Documentation - Appropriate - Recen
t - Suggestions for reasonable accommodation Issue
s to consider Is assistance needed
with - Academic Accommodations - Independent
Living Skills
Questions that need answering Where is the
office of student support? - What is needed to
obtain accommodations? - Are they friendly? - Do
they know what AS is? - Knowledgeable? - Willing
to learn?
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M a k i n g C o l l e g e R i g h t (Cont.)
A C C O M M O D A T I O N S W O R K S H E E T
Visually over stimulating, gets lost in all the
words.
1. Only one question per page. 2. Two sheets of
paper to cover distracting verbiage.
Perception of 60Hz cycling due to visual
sensitivity
Explore alternate lighting, sit next to window,
wear baseball cap in class.
Poor executive function.
Regularly meet with professor (perhaps once a
week) to keep on target with lengthy assignments.
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M a k i n g C o l l e g e R i g h t (Cont.)
REALITY CHECK(Lorraine Wolf) Colleges are in the
business of education College are not
rehabilitative institutions
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S U C C E S S W I T H A U T I
S M
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S U C C E S S W I T H A U T I
S M
Definition
If you are productive and fulfilled with your
life you are probably successful
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