Autism/disclosing

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Question
QUESTION: Hi'
People with autism/aspergers have problems with social situations, Disclosing of a diagnosis must be difficult for people who already have problems with social situations. How are people supposed to disclose a diagnosis? To whom do they need to disclose the diagnosis? It's a difference between saying that you're blind and that you have autism/aspergers. Any amazing tips?

ANSWER: The diagnostic information belongs to the person, or to the parents of the child. Unless things are different in Sweden, there is no obligation to disclose a diagnosis.

But, there are some reason when it's advantageous. A student attending post-secondary school may be eligible to receive accommodations if he has a diagnosis. The type and degree of accommodations vary, but might include extra time for assignments or exams, writing exams in a private, quiet location, oral or scribed exams, permission to take a reduced course load, financial assistance, tutoring, note-taking help, etc.

Some people feel that it could be helpful to disclose to an employer who might then provide such accommodations as:
- giving instructions in written form rather than orally
- allowing more independent than group work
- reducing travel demands so you could operate comfortably in familiar surroundings
- allowing desk lamps rather than fluorescent lighting, if the person is sensitive to flickering lights
- understanding if you work better with headphones, ear buds or ear plugs to decrease the noise in the environment
- understanding if you prefer not to engage in social interactions in the lunch room and at office parties as much might be expected
- permission to have a job coach
- some companies may have an affirmative action policy where they actively try to hire people with disabilities

Most countries have policies that prohibit discrimination on the basis of disability. Despite this, there is a realistic fear that making a disclosure will mean you don't get the job. Although public awareness of autism spectrum disorders and Asperger's is becoming more common, there is still misunderstandings and prejudice.

Rather than talking about whether or not you should make a disclosure, WHY you are wondering might be more important. If things are going all right at work or at school, there may not be any reason to, any more than you would discuss any other medical diagnosis. If you are struggling in your job and feel that the reason for the difficulties might be related to ASD characteristics, then it is time to ponder disclosing.

Is it necessary to give an exact label or might it be just as helpful if you said, "I find it difficult when...." or "I think I could work better if...."? Or, "Noises bother me and distract me from my work. I concentrate better if I can block out some of the sound by...". Even if you tell your boss that you have Asperger's or autism, that likely won't be enough and you'll have to give explanations and examples.

Adults with high functioning autism or Asperger's often wonder about the pros/cons of disclosing their diagnosis.

There's an interesting book on this subject called, "Coming Out Asperger: Diagnosis, Disclosure And Self-confidence". You can take a look at: http://www.amazon.com/Coming-Out-Asperger-Disclosure-Self-confidence/dp/18431024.
Another book I like is called, "Your Life is Not a Label" (http://www.amazon.com/Your-Life-Label-Jerry-Newport/dp/1885477775/ref=sr_1_1?ie=).

Here's a few articles that may help in your decision:
- http://www.aane.org/asperger_resources/articles/adults/should_you_disclose_to_em
- http://musingsofanaspie.com/2013/04/06/adult-asd-disclosure/
- http://www.iancommunity.org/cs/adults/deciding_when_to_disclose
- http://www.psychologytoday.com/blog/aspergers-diary/201106/disability-discrimina

I'm not sure you will be wrong no matter which approach you take, and your decision may be different in each situation you encounter. Listening to the experiences of others, such as in the books and websites above might help you decide.

Best wishes

---------- FOLLOW-UP ----------

QUESTION: Hi!
Let's say you go to a place, eg coffe after church service on Sundays and you want to socialize with some people but you have autism/asperger. Now you may need to tell some of them about your diagnosis. You may have a problem: telling people about your diagnosis has to do with socializing (that you have problems with.)
What should one do?

Answer
Telling people about your diagnosis is your choice and whether or not you make a disclosure may be dependent on the individual person you're speaking with or the situation in which you find yourself.

If you're looking for alternatives, would it help to tell these people that you're shy? That would give an explanation as to why you might hang out on the periphery of the group or may not offer much to the conversation.

Many people appreciate a good listener and you do not have to the the life of the party. Watching the person's face as he speaks, nodding to show that you're listening, facing your body towards him, making some eye contact and occasionally asking a question based on what he has just said are all good conversation strategies and can build a friendship.

I understand that socializing may be difficult. The less you do of it, the more difficult it becomes, so it's good to put yourself out there in situations that you deem to be safe.

Do you think it would be necessary to announce to the whole group that you have Asperger's? Might it be easier to tell just one person and possibly do that ahead of time? There is a good chance that they will not know what Asperger's is or how it might affect you in social situations. So, be specific, based on your own strengths and challenges. You might say that you find it hard to read body language, so do not always know how you are coming across to others. In saying this, you are suggesting that you are open to coaching, so you might receive some feedback on your behavior. Or, you could say that you'd like to be part of this after church group, but sometimes feel uncomfortable in groups. If this is a church group, would it help to confide in your minister and seek his assistance in participating in this group?

Dave Angel is the father of a teen with Asperger's. He runs a nice website and newsletters. Here is some information from his most recent one, along with the contact information at the bottom in case you wish to subscribe to his organization. You might find some of the self-advocacy tips helpful.

"
Mo Bailey is an advocacy coach from San Diego, California. Also the mom to Dylan - a young adult with Asperger's. Each month both of them write entertaining articles for the Aspirations newsletter - http://www.aspirationsnewslett er.com From this month's article here's 6 tips to help you advocate
more effectively:
1. Be conscious of the bottom line at all times
2. Pick your battles (This actually gives you leverage for the important stuff, so know what these "flexibles" are for you, ask for them, yet concede without protest on them too).
3. Set the tone of how you want to be accepted before, or as early in the process as possible.
4. Know what you want, what your non-negotiables are.
5. Know what your "flexibles" are (and have flexibles as it helps in the negotiating).
6. Be strategic, and go for it with a privately "no turning back mindset" and publicly "do what's right for the child" attitude.

This establishes mutual respect and makes your job much easier. You can read Mo's full article "Advocacy Rules - When You Rule it!" when you subscribe at http://www.aspirationsnewslett er.com (This current edition is available for 6 more days).
To the power of successful advocacy,
Dave Angel
Parenting Aspergers,
Information Online,
PO Box 789,
Portsmouth,
PO1 9DY,
UK."

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Dr. Sharon A. Mitchell

Expertise

Sharon can help with parenting and educational concerns. She has worked in teaching, special education, counseling and consulting for over thirty years and gives workshops to educators and parents on working with kids with autism spectrum disorders. Sharon speaks from both the education and parent points of view, having an adult son with Asperger's.

Experience

Sharon has spent decades as a special education consultant with a school district and autism consult for the province's Department of Education, giving workshops and individual consults. Currently she works as regional autism consultant for a health district in between teaching university classes. She is an Amazon bestselling author or a series of novels, each depicting a child who has an autism spectrum disorder. Sharon's Master's thesis looked at the long-term outlook for persons with high functioning autism and Asperger's. Her Doctorate focused on strategies to help those with autism spectrum disorders.

Organizations
Website at http://www.drsharonmitchell.org and sits on Autism Today's Panel of Experts (www.autismtoday.com)

Publications
Author of "Autism Goes to School" - a novel about autism that that became an Amazon bestseller. Get this Amazon bestseller free at http://www.drsharonmitchell.org. In the next book, Autism Runs Away, Ethan is only in grade one and already has been kicked out of one school due to his tantrums and pattern of running away when in a panic. Now in a new school his mom remains glued to her phone, waiting for the call to tell her that they don’t know what to do with a child who has autism. Sara is about to learn if this new school is up to the challenge. (https://www.amazon.ca/Autism-Runs-Away-Book-School-ebook/dp/B01FCYQ7DC). Autism Belongs is the 3rd book. Manny's life has shrank to the confines of their house. His parents are desperate not to rock his world because the aggression has gotten to much worse. Where will this lead? Is there a chance that Manny could actually belong out in the world? You bet! Get a free sample at https://www.amazon.com/Autism-Belongs-School-Daze-Book-ebook/dp/B0184ZQMI6. Book four, Autism Talks and Talks, is about a 12 year old girl who has Asperger's. She's bright, inquisitive, highly verbal, but lacks social skills. Try a free sample at https://www.amazon.ca/Autism-Talks-Book-School-Daze-ebook/dp/B01IIUZH3S Book five, Autism Grows Up features Suzie, a bright, twenty-one year old whose life collapsed after she finished high school. Now, she lives in her mother's basement, spending nights on her computer, afraid to broach the world outside their door. Autism Grows Up is found at https://www.amazon.com/Autism-Grows-School-Daze-Book-ebook/dp/B01JB8QW3U. Prefer a boxed set? Get the first 3 books bundled together at https://www.amazon.com/Autism-Box-Set-School-Books-ebook/dp/B01KBEHJ08. Co-author of Amazon.com bestseller, The Official Autism 101 Manual (http://autism101manual.com/).

Education/Credentials
B.A. in Psychology, B.Ed. in Special Education, M.A. in Educational Leadership PhD. in Psychology Management, specializing in autism.

Awards and Honors
B.R.A.G. Medallion for the novel Autism Goes to School - Book 1 in the School Daze Series. (http://www.bragmedallion.com/medallion-honorees/2013/school-daze-autism-goes-to-school). Like Autism Goes to School, the third book in the series, Autism Belongs, also ranked #1 on Amazon (http://www.amazon.com/Autism-Belongs-School-Daze-Book-ebook/dp/B0184ZQMI6). Manny is not like other children. He doesn’t talk. He doesn’t leave the house. His parents desperately try to arrange their world so that Manny does not get upset. Because, when he does, well, the aggression was getting worse. At ten, Manny was becoming difficult to handle.

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