Disclosure of Autism Part One

More on this concept of disclosure.

I am the mother of an eleven-year-old with autism. I have been relatively open about my sonʼs autism for most of his life (he began services at fifteen months of age).

What do I mean about “open?”

What I mean is that I normally don’t shy away from discussing autism, if my son is with me or not. He knows he has autism, even though he’s still processing exactly what that means.

The other day I was contacted by a mother of a seven-year-old. Her child attends the same school as my son and he has the same second grade teacher my son did.

We met and discussed that trouble she is experiencing with the teacher—which turns out is similar to the trouble we had with her four years earlier.

What did I do?

First, we were on the same page about the teacher, our experiences were similar.

Second, after hearing that things in her son’s classroom were not going smoothly, I advised her to call an emergency IEP (parents in California can call one at any time). I told her that everyone should sit down and calmly discuss the issues.

She did just that and the IEP is scheduled.

Did anything else happen?

Yes, while we were talking, the issue of disclosure came up.

Toward the end of the conversation she asked me questions about whether my son knew he had autism, when we told him, and do I regularly discuss autism around him.

I told her that we never directly sat our son down and said, “You have autism.” I told her that I’ve always been pretty open so my son had heard the word autism for years.

And, within the last two years, he has been putting the pieces together. (Bad joke: autism puzzle pieces!). He has finally directly asked us if he has autism.

I told her how I talked to him about autism. I had said something along the lines that all people are different, and he’s just another person who is different.

I went on to tell her that my husband and I decided to let our son come to us with questions regarding autism. And, a few times he has.

He has taken his time. But, knowing my son, he will ask again. He will want more details. And, I think he’ll be accepting and understanding of his condition.

I told all of this to this mom.

What did she say?

She told me that her and her husband had yet to tell their seven-year-old that he has autism and she was worrying that it was getting too late. I told her it wasn’t “too late” at all. I told her that since her son is only seven, she has time. She should focus more on the school issues and helping him as best as she could. And, maybe even her son will start to ask those questions on his own.

It’s all we can do, really. Help, wait, talk, call IEPs when necessary.

In my next blog, I will again discuss this mother of a seven-year-old and what itʼs like helping another parent when you know that they are not getting proper services and/or are not getting treated nearly as well as we got treated.

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