Things to Think About When Disclosing Asperger's Syndrome or High Functioning Autism

by Eileen Bailey Health Writer

If your child has autism severe enough to interfere with their education, you have probably already talked with his or her school personnel and teachers. You may have already gone through the IEP process and have accommodations in place. But for those with children with high functioning autism or Asperger's syndrome (or what was formerly considered Asperger's), you might wonder if you should disclose or if you should allow your child to be considered "normal" or typical. You may feel that labeling him or her with a disorder will call attention to the quirks or strange behaviors and make the teacher and classmates look at your child differently or treat him differently.

Obviously, whether or not to disclose your child's diagnosis is a personal decision. If your child is older, this might be something you want to discuss with him, to find out how he feels about disclosure and whether it will make him feel more comfortable or uncomfortable in the classroom. But for younger
children, it is often up to you to make the decision. There are differing opinions but ultimately the decision comes down to what is in the best interest of your child - and you are the expert in that.

While we can't give you an answer to whether or not you should disclose your child's diagnosis, the following are some things to think about:

Sometimes when we hide something, or keep it a secret, our children think it is something we are ashamed of. Lynne Mitchell, M.S.W., in an article "It's Not a Secret: Why Disclosure is Important," states, "Asperger syndrome is not, and never should be something shameful or embarrassing in and of itself. If someone behaves in an embarrassing way it is totally different than labeling their whole way of experiencing the world as bad. A parents of child with AS, we must ensure that the message the children get is that they are not shameful or embarrassing for just being who they are." [1]

If you do decide to disclose, make sure your language reflects "challenges" rather than "weaknesses."
Teachers, coaches, scout leaders or others who come into regular contact with your child understand that challenges can be overcome. They see challenges differently than they see weaknesses. Word your disclosures to reflect this, such as, "Robert is very good at following directions, you won't have any discipline problems, but he may have some difficulty when the daily schedule is suddenly changed. You can help him by"" This way, you give notice to a potential difficult situation as well as provide a way to help your child grow.

You may want to talk to your child's teacher about accommodations, even if you don't have an IEP. In this case, you are going to have to explain to the teacher why you feel your child would benefit from these changes.
Simply stating that your child has a difficult time with transitions probably isn't going to get the teacher's full cooperation, but explaining the diagnosis, and educating the teacher on what AS and high-functioning autism means, might.

While teachers may benefit from a full disclosure, others may only need a partial disclosure. When doing this, you talk about a specific problem that may occur in that situation, but you don't need to give the specific diagnosis. For example, if your child is taking a martial arts class and does well most of the time, but has difficulty with one aspect of the class, you can address that one situation, without naming the diagnosis.

Disclosure is, "to give someone a more accurate and complete understanding of who the individual with AS is, what his/her strengths are and what s/he may need as modifications to compensate for areas of weakness." [2] When deciding whether or not to disclose, think about how and if the disclosure will benefit your child. Remember, you can choose who to disclose to. Just because you are willing to let certain people know, it doesn't mean you have to wear a sign and announce it to the whole world. Pick and choose who you think needs to know and those who, by knowing, can best help your child.


"Asperger Syndrome and High Functioning Autism Tool Kit," 2010, Peter F. Gerhardt, Ed.D. et al, Autism Speaks

[1] 'It's Not a Secret: Why Disclosure is Important," Date Unknow, Lynne Mitchell, M.S.W., Asperger's Association of New England

Eileen Bailey
Meet Our Writer
Eileen Bailey

Eileen Bailey is an award-winning author of six books on health and parenting topics and freelance writer specializing in health topics including ADHD, Anxiety, Sexual Health, Skin Care, Psoriasis and Skin Cancer. Her wish is to provide readers with relevant and practical information on health conditions to help them make informed decisions regarding their health care.