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Disability

Disclosure
Why, When, Where
and How

For
Self-Determination

And

Self-Advocacy
Connect the Dots of
Life!
Teach individuals to think and act on their own
behalf. These areas include:
What some experts say
about when to tell
children about their
disability.
“I usually encourage people to share a diagnosis when
a student begins commenting on frustrations of
‘not being like the other kids’ or ‘it's so
much easier for everyone else’.
That‘s often around 7-9 years of age.

I definitely believe a child should know their diagnosis


well before adolescence hits!”

Carol Gray
Director of The Gray Center for Social Learning
and Understanding
Developer of Social Stories and Comic Strip
Conversations
Author and international expert and speaker on
Autism and Social Understanding.
“My own opinion is that you should tell kids about their
diagnosis when they begin to notice that they’re different, or
begin to question things. I suppose the age will depend
on their level of awareness of that. My kids were 5 and
8 when I told them.

I know of a parent who waited until her son was 18, when
he saw a newspaper article about Liane Holliday Willey,
brought it to his mom, and said, ‘This is me, isn’t it? I just
always thought I was stupid!.’ That was a situation
where they waited too long! (He had been in special
education his entire life, but they had never told him why.)”

Laurel Hoekman
Executive Director of The Gray Center
for Social Learning and Understanding.
The Gray Center for
Social Learning and
Understanding

www.thegraycenter.org
Articles For Introducing
Children
To Their Disabilities

Hoekman, L. (Spring-Summer,
2002). Introducing Asperger’s
Syndrome. The Morning
News, pp.2-6.

Attwood, T. (Fall 1996). How Do


You Share The News? The
Morning News, pp. 5-7.
What is Disclosure?

When you tell someone something that


was previously unknown, you are practicing
disclosure. Disclosure comes from the word
“disclose,” which means to open up, to
reveal, or to tell .

When you disclose, you are


intentionally releasing personal
information about yourself for a
specific purpose.
National Collaborative On Workforce and Disability for Youth (2005).
The 411 on Disability Disclosure Workbook. Washington, D.C.
Institute for Educational Leadership
One important decision that many
young people face is whether or
not to disclose their disability. The
decision to disclose a disability
belongs solely to the person with
the disability. Disability disclosure
is a very personal choice and
should definitely be an informed
choice. If you have a disability,
there are no requirements that you
disclose your disability to anyone
at any time, but in order to receive
accommodations at work or in
school, you must disclose.

National Collaborative On Workforce and Disability for Youth (2005).


The 411 on Disability Disclosure Workbook. Washington, D.C.
Institute for Educational Leadership
Why disclose one’s
disability?
The Gift of
Advocacy
The gift of advocacy is the most
important gift we can give to
ourselves and the next
generation. Some day there
will not be anyone around to
help get our needs met. We
are experts about our own
needs and are, therefore, the
ones who should be explaining
our issues and ways to work
around them.
Kassiane Alexandra Sibley
Adult with an Autism Spectrum Disorder
National Author and Presenter
While the primary goal for
disclosure is usually to reach better
mutual understanding with others,
a better understanding of self
often occurs in the process.
Stephan Shore
Adult with ASD
Internationally known author, presenter
and consultant on adult issues pertinent to advocacy,
disclosure, education, relationships, and employment.
The unexamined life is
not worth living.
Socrates
Self-
Determination:
the ability to
identify and
achieve goals for
one’s self.

Self-Advocacy:
comprises the
skills necessary to
stand up and
explain what one
Self-Advocacy

Many individuals have been


directed their whole school
careers and/or possibly their
entire lives!
The idea is to teach
individuals
Does theto think for
person
themselves!
Canthe
know Can
what the individual
he/she
personreally
saywants
maketo
“no” inhis/her
life? own
something,
decisions
if about his/her
needed?
know how andlife? when to disclose
information about his/her
disability
Self-Determination
Self-Determination is the desire,
ability, and practice of directing
one’s own life. It is often
referred to as
“THE BIG PICTURE”
because it has so much to do
with the person you are and
the person you want to be.

National Collaborative On Workforce and Disability for Youth


(2005).
The 411 on Disability Disclosure Workbook. Washington, D.C.
Institute for Educational Leadership
A self-determined person can set goals,
make decisions, see options, solve
problems, speak for him or herself,
understand required supports and
evaluate outcomes.
Martin & Marshall 1996

Being a self-determined person helps


you to make important choices and
informed decisions in your life based
on your abilities, interests and
attitudes. Self-determined people
accept themselves, respect
themselves, and value themselves for
who they are and what they have to
offer to others.

National Collaborative On Workforce and Disability for Youth


(2005).
The 411 on Disability Disclosure Workbook. Washington, D.C.
Institute for Educational Leadership
Elements of Self-
Determined Behavior
• Choice making skills
• Decision making skills
• Problem solving skills
• Goal setting and attainment
skills
• Independence, risk taking and
safety skills
• Self-observation, evaluation
and reinforcement skills
• Self instruction skills
• Self-advocacy and leadership
skills
• Self-Awareness
• Self-Knowledge
Life Beyond The Classroom
Paul Wehman
Self-Advocacy is the process by
which we get our wants and
needs met. If we are to be
independent, we have to
advocate for ourselves. In spite
of this blatant truth, few parents
and professionals think to teach
advocacy. They do not teach
advocacy mainly out of ignorance
- it does not occur to them that a
person on the spectrum needs to
be shown how. But the truth of
the matter is that we do not
naturally learn how to get our
needs met the way typical
children do.

Kassiane Alexandra Sibley


Adult with an Autism Spectrum Disorder
Author and Presenter
Themes that characterize Adults
Who Have Successful Lives

• Personal Responsibility
• Self-Determination and
Initiative
• Social Competence
• Vocational Competence
• Postsecondary Education

-Paul Wehman author of Life Beyond The Classroom


Employment
•Adults with disabilities are much less
likely to be employed than adults
without disabilities.

•Unemployment rates for working-age


adults with disabilities have hovered at
the 70% level for at least the past
twelve years.
-President’s Commission on Excellence in Special
Education

•Up to 75% of all people with


disabilities are unemployed.

•79% of all people with disabilities who


are unemployed wish to be employed.
–Lewis Harris and Associates
•Only 6% of all people with ASD
have full-time paid employment.

•12% of those with high


functioning autism or Asperger
Syndrome have full-time jobs.
-The National Autism Society (UK)

•The autism population remains


the most unemployed population.
- U.S. Department of Education, Office of
Special Education
Social behaviors or competence on
a job is as important as
production or task competence.

Critical areas are:

• Responding to a greeting

• Not interrupting

• Recognizing when assistance is


needed

• What to do on a break and what


to talk about.

• -Peter Gerhardt Ed.D. “Life Journey Through


Autism: A Guide for Transition to Adulthood”
Disclosure about having ASD is a
personal choice. However, it is
important to keep in mind that in
order to be eligible for
accommodations under the
Americans With Disability Act
(ADA) you must tell the potential
employer during the interview or
shortly after being hired.
Otherwise, your “window of
opportunity” for reasonable
accommodations on the job
closes.

Chantal Sicile-Kira
Author of
Adolescents on the Autism Spectrum
Mother of a son with ASD
Nationally known author and presenter on Autism Spectum
Disorders
Who ?
When ?
Where ?
Important components to
know how to disclose
one’s disability

• Should I or should I not tell?


• When should I tell?
• Who should I tell?
On a scale of 1-10 ask
yourself how important it is
to make a decision about
your situation. If you
choose “3” or higher (with
“1” being not important at
all and “10” being extremely
important), use the
worksheet. Level 1 or 2
can probably be resolved
by talking to a friend.

Ruth Elaine Joyner Hane, Ask and Tell: Self-Advocacy and


Disclosure for People on the Autism Spectrum
Author and Adult with an Autism Spectrum Disorder
If you are wondering who to ask when you
need help, review the following
description.
Helpful people are people who:

-You know you can trust

-You know well and have your best


interests in mind

-Can keep a confidence and not gossip.

Ultimately, you are the one to decide


when it is safe to tell someone and
who to trust.

Ruth Elaine Joyner Hane, Ask and Tell: Self-Advocacy and


Disclosure for People on the Autism Spectrum
Disclosure Worksheet
1-10 Level_____
Situation:

___ Tell ___ Not Tell

Possible result:: Possible result::

___ Tell Later ___Need Help

___ Get Help:


Name_______________________
Possible result:: Phone_______________________
Email_______________________
Notes:
To Tell
Ask yourself the five “w” questions
and one “h” question:

Who do I tell?_______________

What do I say?______________

When do I tell?_______________

Where do I tell?_____________

Why would I tell?_____________

How do I tell?_________________

.Ruth Elaine Joyner Hane, Ask and Tell: Self-Advocacy


and Disclosure for People on the Autism Spectrum
Not Tell - the
circumstances are not
right or too risky.

Tell Later - disclose after


rapport and trust has
been established.

Ruth Elaine Joyner Hane, Ask and Tell: Self-


Advocacy and Disclosure for People on the
Autism Spectrum
Advantages of disclosure:
• Itallows you to receive reasonable
accommodations so that you can pursue
work, school, or community activities more
effectively.

• It provides legal protection against


discrimination (as specified in the
Americans with Disabilities Act).

• It reduces stress, since protecting a “secret”


can take a lot of energy.

• It gives you a clearer impression of what


kinds of expectations people may have of
you and your abilities.

• It ensures that you are getting what you


need in order to be successful (for
example, through an accommodation or
medication).
Advantages continued

• It provides full freedom to examine and


question health insurance and other
benefits.

• It provides greater freedom to communicate


should you face changes in your particular
situation.

• It improves your self-image through self-


advocacy.

• It allows you to involve other professionals


(for example, educators and employment
service providers) in the learning of skills
and the development of accommodations.

• It increases your comfort level.

National Collaborative On Workforce and Disability for Youth (2005).


The 411 on Disability Disclosure Workbook. Washington, D.C.
Institute for Educational Leadership
Disadvantages
of disclosure:
• It can cause you to relive bad past experiences that
resulted in the loss of a job or negative responses
from your peers.

• It can lead to the experience of exclusion.

• It can cause you to become an object of curiosity.

• It can lead to your being blamed if something doesn’t


go right.

• It can lead to your being treated differently than


others.

• It can bring up conflicting feelings about your self-


image.

• It can lead to your being viewed as needy, not self-


sufficient, or unable to perform on par with peers.

• It could cause you to be overlooked for a job, team,


group, or organization.

National Collaborative On Workforce and Disability for Youth (2005).


The 411 on Disability Disclosure Workbook. Washington, D.C.
Institute for Educational Leadership
Disclosure in the
School Years
Having a vehicle for developing
skills in self-advocacy and
appropriate disclosure while in
public school will pay great
dividends in self-awareness
and interfacing with the world
as a “different” person later on.
The IEP is a great way to
start this work.

Stephan Shore
Adult with ASD
Internationally known author, presenter and consultant on
adult issues pertinent to advocacy, disclosure, education,
relationships, and employment.
Special attention to developing a
sense of self-determination for
students with disabilities is critical
to help ameliorate the adult
assistance typically received in the
public schools and elsewhere.
This adult assistance can result in
an over reliance on other people’s
opinions for decisions that should
be made for oneself. The self-
initiated IEP aids in teaching those
with disabilities “to act as the
primary causal agent in one’s
life and making choices and
decisions regarding one’s
quality of like free from undue
external influence or
interference”.

Michael Wehmeyer
Teaching Self-Determination to Students With Disabilities: Basic Skills for
Successful Transition
Name ___________
Person Centered Plan and IEP

Date ____________

ATTENDING:

WHAT AM I DOING NOW?

School:

Home:

Work:

Social:
WHO AM I?

Strengths Interests Challenges

FEARS:

WORRIES:

HEALTH AND SAFETY:

DREAMS:

GOALS:
Students participate in
the IEP/PCP as much as
they are able

• The student attends the


IEP/PCP for a short period of
time.
• The student prepares a
statement that is read aloud.
• The student co-presents as an
equal member of the IEP/PCP
team.
• The student leads the IEP/PCP
meeting with support from
his/her primary teacher.
Disclosure in
Postsecondary Education

Remember… after high


school, the only way
you will receive the
accommodations you
might need is to ask
for them yourself.

National Collaborative On Workforce and Disability for


Youth (2005).
The 411 on Disability Disclosure Workbook. Washington,
D.C.
Institute for Educational Leadership
Once you graduate or exit high
school, you are no longer entitled
to services and supports; rather,
you become eligible for adult
services and supports based on
your particular situation, your
disability, and your ability to
disclose necessary information.

National Collaborative On Workforce and Disability for Youth (2005).


The 411 on Disability Disclosure Workbook. Washington, D.C.
Institute for Educational Leadership
Self-Advocacy skills are considered
so critical to an individual’s success
in college that many such
institutions do not even have a
mechanism by which a parent may
advocate on their behalf.

As such, it is of critical importance


that individuals are prepared with
self-advocacy skills to help him/her
communicate his/her needs to the
appropriate person in the
appropriate manner. (Public
universities generally have an office
of “Disability Support Services”
which is the best place to begin)

Life Journey Through Autism: A Guide for Transition to Adulthood


Organization for Autism Research
Disclosure in the Workplace

Remember accommodations in
the workplace are only
provided when a worker
discloses his or her disability
and requests job
accommodations.

National Collaborative On Workforce and Disability for Youth (2005).


The 411 on Disability Disclosure Workbook. Washington, D.C.
Institute for Educational Leadership
The primary question becomes not
should one disclose, but rather
what information is relevant for
disclosure and to whom?
Remember in all cases, disclosure
is a personal choice, and there is
not law obligating anyone to
disclose that they have a disability.
However, to be eligible for
accommodations under ADA, some
level of disclosure will be
necessary.

Life Journey Through Autism: A Guide for


Transition to Adulthood
Organization for Autism Research
WHEN to disclose on the job
Though there is certainly no one
“right” time and place to practice
disclosure (it will depend on your
individual situation), being proactive
is strongly encouraged. Being
proactive puts you in better control of
your life.
When you decide to disclose your
disability to your employer, there
may be settings and circumstances
in which disclosure is more
appropriate than others.
National Collaborative On Workforce and Disability for Youth (2005).
The 411 on Disability Disclosure Workbook. Washington, D.C.
Institute for Educational Leadership
WHEN to Disclose on the Job

•In a third-party phone call or


reference
•In your letter of application or
résumé
•In your cover letter
•Pre-interview
•On the employment application
•At the interview
•After you’ve been offered a job
•During your course of
employment
•Never
National Collaborative On Workforce and Disability for Youth (2005).
The 411 on Disability Disclosure Workbook. Washington, D.C.
Institute for Educational Leadership
When selecting the person to disclose
to, reflect on the following questions
first:
• Does this person have the power to
determine how reasonable the request is
for the accommodation?

• Can the person provide the required


accommodation(s)?

• Is the person responsible for hiring,


promoting, or firing?

• Is the person in a supervisory role and will


he or she support me?

• What experiences does this person have


with similar disclosure situations?

• Do I have respect for and trust in this


person’s keeping my disclosure
confidential?
National Collaborative On Workforce and Disability for Youth (2005).
The 411 on Disability Disclosure Workbook. Washington, D.C.
Institute for Educational Leadership
I tend to tell about my autism when the
information is essential for safety, or I tell
someone in authority. This is a person I
trust, who will know how to be helpful. He
or she will do or say the right thing and not
make the situation worse.

Ruth Elaine Joyner Hane


Midwest Director for Autism Society of America’s
Board of Director
Consultant
Presenter
Mother
Adult with an Autism spectrum disorder
Disclosure in Social and
Community Settings

Remember that it is not essential to


divulge specific personal information
about your disability. What is most
important and helpful is to provide
information about how your disability
affects your capacity to participate in
social and community activities, and
the supports that are needed to allow
you to participate fully.

National Collaborative On Workforce and Disability for Youth (2005).


The 411 on Disability Disclosure Workbook. Washington, D.C.
Institute for Educational Leadership
How To disclose?

• In person or on the telephone

• A disclosure card with a


statement about needs

• A letter with an explanation


about needs
Sample Letter: Emergency Situations
If you are reading this letter, I am probably already acting in an unusual
manner. My name is Kassiane Sibley, and I have a neurological
condition known as autism. Because of my condition, I behave
differently from most people, although I look normal.

When I am mildly stressed, I might rock or make movements with my


hands. I also do not look at people. If I am severely stressed, I may
become non-verbal or talk way too much. Sometimes I completely
forget how to talk.

Sensory stimuli can feel very intense to me. If you must talk to me,
please do so in a quiet voice. Even if I have headphones on, I can
hear you. Please do not touch me without warning me first, and then
do so only if absolutely necessary. If you have to tough me, please do
so firmly. I do not tolerate flashing lights well either, and might appear
to panic.

Usually I will calm down on my own. I am neither dangerous nor


disturbed, but just have a different way of dealing with stress. If you
feel that this is an emergency situation, please call (emergency
contact) at (XXX)-XXX-XXXX. If they are not available or I am
traveling, please refer to the attached sheet for the nearest emergency
contact. If I need to go to a hospital, an Order of Saint Francis
hospital is my first choice. Also, I take Topamax, Neurontin,
Risperdal, and Strattera and am allergic to stimulants, food dye, and
Lamictal. If I will be safe calming down at a nearby, quiet location,
that is preferable to calling anyone.

Thank you for your understanding,

Kassiane A. Sibley

Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum
Sample Index Card: General
Information

I have autism. This means I do not make eye


contact well or sound like most people. This also
means I have difficulty with the following:

• Eye contact
• Bright or flashing lights
• Sudden sounds
• Light or unexpected touches

I am not aggressive or dangerous, but I may not


react as you expect in certain situations. Please
inform me of what you plan to do before you do it.
If you are going to touch me, please say “I need
to touch your shoulder”, for example, and then
use a firm touch.
Developing a Disability
Statement
• Start in a group to approach the
topic of disabilities in a more
general way.
• Be sensitive!
• Focus on “the facts.”
• Obtain identification information
from the IEP form.
• Assist the individual to learn exactly
what his/her identification means.
• Assist the student to develop the
statement in his/her own words as
much as possible.
• Allow the student time to process
and “evolve” with the concept.

Burke, Charron, Steinkamp


Authors of The Planner Guide
“Just the facts ma’am”
Learning to Use a
Disability Statement

• Teach the concepts of Who,


What, When, Where, Why of
disability disclosure.
• Rehearse and role-play as
many scenarios as possible.
• Assist the individual with the
mode of communication per
situation (i.e. written statement
vs. verbal statement).
Understanding that advocating
for yourself might mean
disclosing your disability so
accommodations and/or
acceptance can be made.

Even young adults with fewer


skills and more complex
learning or behavioral
challenges can effectively and
appropriately disclose by (as
one example) using preprinted
information cards that they
may hand out.

-Peter Gerhardt Ed.D


Organization for Autism Research
National Collaborative on
Workforce and Disability for
Youth. (2005).

The 411 on Disability Disclosure


Workbook. Washington, D.C.

Institute for Educational


Leadership

www.ncwd-youth.info/.
www.researchautism.org

Life Journey Through


Autism:
A Guide for Transition
to Adulthood
Information about the Office of
Disability Employment Policy
can be found at:

www.dol.gov/odep/.
Ask and Tell: Self-Advocacy and
Disclosure for People on the
Autism Spectrum

Ruth Elaine Joyner Hane


Kassiane Sibley
Stephan Shore
Roger N. Meyer
Phil Schwarz
Liane Holliday Willey

2004 Autism Asperger’s Publishing


Company

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