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

SelfDetermination: 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 to think for Does the person themselves! Can he/she really know Can the person saywants whatthe individual makein something, life? “no” tohis/her own decisions about his/her if needed? to disclose know how and when life? 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 SelfDetermined 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

Possible result::

___ Get Help: Name_______________________ 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: SelfAdvocacy and Disclosure for People on the Autism Spectrum

Advantages of disclosure:
• It

allows 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 selfadvocacy. • 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 selfimage. • It can lead to your being viewed as needy, not selfsufficient, 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 selfinitiated 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 FEARS:

Interests

Challenges

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

Sign up to vote on this title
UsefulNot useful