Autism & the Question of Disclosure

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In order to be a successful litigant under ADA, the claimant must have disclosed his or her disability to the employer, and requested reasonable accommodation. If you disclose your autism now, that has a mixed set of consequences. In your letter of disclosure (not a verbal statement) to your immediate supervisor with CC's to the Human Resources Division, you must be careful not to disclose "too much," and to emphasize, in your request for accommodation, those reasonable measures calculated to assure and enhance your performance. Remember, the term is "reasonable" and another term to keep in mind is "disclosure." What they know from what you tell them, and how they use that knowledge is subject to interpretation
Roger N. Meyer
How have you told your children about diagnoses such as Asperger's, Autism, Tourette's, etc.? When do you tell them? What do you say? And how do the children react?
Blogging Baby
I had not really considered that this is more about him than it is about me. But it is. He is the one who will have to live with it for the rest of his life. And that is not a bad thing. I have come to realize that I was projecting my own associations with the word, though, and I thought he would be upset by hearing that he has it. But he doesn't have any associations with the word!
Jennifer Creer
On good practice in diagnosis with an implication for seeking increased provision to match the needs identified, and how to share a diagnosis with the individual concerned, and with siblings, peers, and significant others.
Mike Connor
Although Mr. Olmsted occasionally features letters from parents, researchers and autistic individuals who do not share the conviction that all autistics are “poisoned,” readers already familiar with the clinical literature and popular discourse about autism are likely to notice his consistent tendency to spotlight informants (often anonymous) who insist that autism is an iatrogenic injury new to the twentieth century, and who deny the possibility that independently functioning adults on the autistic spectrum exist in more than insignificant numbers.
Kathleen Seidel,
Katie Grimes is not your typical college student. The 20-year-old from Federal Way has autism, a disorder she did not openly reveal until three years ago when she started working on a Girl Scout project.
Angela Lo, Seattle Times
I need to be told why it is wrong to be autistic. And don't avoid the question. Because if there were nothing wrong about being autistic, this whole business--diagnosis, disclosure, whatever--would be a piece of cake.
Michelle Dawson
The principles can remind doctors and nurses of the importance of attending to the patients' emotional state, in addition to providing information about their medical condition.
Afaf Girgis
This is written primarily for those I meet face to face, or at least in real life. It is a list of suggestions, intended to make our time together easier and more enjoyable, hopefully for the both of us... This is not a generic guide to interacting with autistic people; it's a specific guide to interacting with me. Some of these points apply to many, in some cases even a majority of autistic people, but you won't know which ones unless you ask them. In fact, the most important point in this document is that it's much better to ask than to assume you know.
The prognosis for children with ASD is governed by the joint impact of the degree of expression of ASD and the degree of developmental delay, if any. All combinations of ASD and intellect are possible.
James Coplan
At times G may seem uncooperative, this is not a sign of defiance or disrespect. It may be a time that he is overstimulated, or just very interested in what he is doing...
Disclosure of one's own experiences with psychiatric disability can be both exhilarating and depressing. This article shares experiences of the author and others in their disclosure, and provides some ideas about the risks and benefits of disclosure.
Ruth O. Ralph
Naming it, we feared, would give our sons the impression that they were hopelessly different from their peers. Like branding a cow, a diagnosis would be a tangible reminder to them and to others that they were born different, that they perceive the world in a different way, that they act differently, and that they will always be different. But when we reached a crossroads where it was evident that they needed to know the diagnosis, I realized that we had been laying the groundwork throughout these past years. Because Ben and Nathan already knew that they were different, just as they knew and celebrated the fact that everyone is different from one another, being told their “label” would not likely be devastating to them.
Laurel Hoekman
Stephen Shore has recently finished his second book that focuses on helping those with autism and Asperger's syndrome become better advocates for themselves. Shore says better education and self-advocacy are the keys to many problems faced by people with disabilities and their communities.
Bridget Samburg, Boston Globe
Explaining an autism spectrum diagnosis to an individual can not be done in one or two encounters. The individual needs time to assimilate the new information about him/herself at their own pace.
Marci Wheeler
I try to be really careful about not completely disregarding complementary or alternative sorts of treatments, but I do draw a line around such treatments that I feel may be harmful to the patient. So in patients who are involved in IV chelation, strange behavioral interventions, or taking different sorts of medications that don't have good clinical research backing them up and may have harmful side effects, I do challenge the parents to be careful. And there are a lot of unscrupulous doctors who don't have training in developmental disabilities and who are willing to takes parents' money to perform all sorts of treatments that don't necessarily create any good and may cause significant harm for the kids.
There are a number of individuals who self- identify as having AS or a related disorder who maintain internet sites, and he may relate more easily to their accounts of their lives than to your trying to directly tell him anything.
How do you tell your child that they have Asperger's Syndrome? When is the best time to tell your child about their diagnosis? Hopefully, through my personal experience I can assist families with this awkward 'moment'.
Josie Santomauro
Knowing and accepting your own strengths and weaknesses is helpful in feeling good with yourself. For people with autism this means knowing what autism is, what the consequences are (both negative and positive) and how you can cope with it.
Peter Vermeulen
The decision of whether to disclose the existence of an invisible disability is a very personal one. Of course, parents must disclose a child's disability in order to obtain appropriate educational services for that child; however, most states protect the privacy of children who benefit from special education programs, by restricting the dissemination of personal information to those who have a “need to know,” such as teachers, select administrators and support staff. Those with a "need to know" are generally prohibited from discussing a student's disability without the express permission of parents. One would hope that parents might eventually consult the child to see how he or she feels about it.
Kathleen Seidel,
Discussion group thread about public disclosure of a child's autism diagnosis.
The experience of discovering that one's child has a disability requires adjustment by the parents to the breakdown of their expectations of a non-disabled child. The way the news is given can have a significant impact on the parents.
Paul Bartolo
These families conveyed to others that the disability was just one more characteristic of the person rather than the only one. By openly discussing their children's strengths and needs, the parents contributed to reducing the disability stigma.
Ann Turnbull et al
By the time I was in college and took the first test that labeled me as 'deviant', I knew that I was different -- and I knew that was a good thing. Even so, it was a difficult struggle for me to come to terms with being different.
Sunni Maravillosa
...academe is generally considered a more welcoming environment than most for people with autism. They get paid to talk at length about their area of interest in a realm where eccentricity and limited social skills are often seen as signs of genius rather than cause for scorn. "Universities are probably the place where we get the kindest treatment, where we are respected and valued the most," says Mr. Perner.
Michelle Diament
From the day he was diagnosed we openly used Autism to explain why things were different for James. He was around 4 and did not understand, but came to realize that for James having Autism was like having brown hair. It was a part of who he was, not a bad thing, not a good thing, just part of James. I encourage people to not hide this from their children.
Laurel Hoekman
This partial disclosure in and of itself is indicative of how far I've come, as I can remember a time, when I would have found it very difficult to not "tell the whole truth and nothing but the truth."
My advice is always to tell... A label only becomes a bad thing when it is used with a negative connotation, or used to exclude or prejudice the child. That stuff happens with or without the label.
Martha Kate Downey
I now feel educated on how to create appropriate learning environments for myself. I am more aware of how to use my strengths to make up for my weaknesses in learning how to do all of life's tasks with less failure and struggle.
Lisa Marti
It's a personal choice, but if you have Asperger Syndrome, letting the people you routinely deal with (teachers, classmates, supervisors, co-workers, etc.) know about AS and how it affects you can help them understand you, support you and appreciate you. And you may be making the way easier for the next person they meet who has AS.
Dan Coulter
Most of all, I think it's important to give the whole picture and focus on the positive. You're not trying to get others to feel sorry for your child. You're trying to get them to see Asperger Syndrome as one of those differences we all have. If you choose to explain some of the "different" behaviors that the class is likely to see your child exhibit, be sure to focus also on his interests and strengths. The friendships my son has made have been largely based on interests he shared with others.
Dan Coulter

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