Expert: Catherine Ridenour - 6/6/2007

Question
My son is almost 11 years old and in 5th grade. He was diagnosed with Aspergers Syndrome in kindergarten.  He began taking straterra in 1st grade.  As he finishes up elementary school and heads into middle school this fall, I am feeling more like he needs to know about his diagnosis.  I haven't told him in the past because he is often fearful about death.  I didn't want to scare him and I also didn't want him to think "I can't .... because of aspergers"  I have asked the school counselor about how to break the news and have it be a positive experience.  The book "Aspergers Huh?" has been recommended, but when I read it, I thought it was kind of negative and not sure how my son would react.  What advice do you have for breaking the news to a child about their diagnosis?

Answer
Hi Melody,

I strongly believe that children deserve to know their diagnosis and to participate in their IEP process. Asperger's kids are usually quite bright, just socially "deaf" and possessed of odd behaviors.

I'm sure he knows he's different from his age peers. He is probably more stressed by feeling out of step and not knowing why than he will be to have the answers. You can assure him that Asperger's has nothing to do with dying or being sick. Explain that he was born with a difference in the wiring of his brain. It does not make him defective, just different. A great example is that a cat is not a defective dog and is quite happy being a cat.

You can also point out many successful people who probably are/were "Aspies". Both Thomas Edison and Albert Einstein were very likely on the autistic spectrum.

Check out the books available at Amazon that were written by A.S. or High Functioning Autistic people. Stephen Shore edited "Ask and Tell" about how and when spectrum individuals should share their diagnosis with the world. You may find it helpful. He also wrote "Autism for Dummies" for the classic yellow covered book series. It is quite accessible and kind of fun. Another good book is "Aquamarine Blue 5" edited by Dr. Dawn Prince-Hughes.

Be sure YOU read any book first, just as you wisely did with the one suggested. Then you will be able to answer his questions. Some of the authors are rather negative about how the "neurotypical" world has treated them. I have to agree, it is not always kind but things are getting better.

Because of the social issues of Asperger's and Autism, it is hard to find groups of autistic people who meet regularly. However, you may be able to find a mentor for your son at a university. He may benefit by meeting older students with similar conditions. Talk to the department that assists students with disabilities. They can't give you any names, but they can ask for volunteers to contact you.

I think you might find a discussion forum helpful, as well. Check out the boards at http://www.rettdevil.com/ You are asked to "join" but it's free and confidential. I know the board owner personally.

Best wishes,
Catherine