One of the questions I hear frequently in the autism community is how and when parents should talk to a child about the child’s Autism diagnosis.

The Washington Post featured a column discussing this question and providing guidance for parents.

The key issue raised in the column was when and how to have the conversation so that the child “feels good about himself” and doesn’t use it as an excuse to get away with things.

There were five steps offered in the column:

  • If the child is asking questions, it is time for the conversation
  • Avoid technical terms
  • Be specific
  • Do it gradually and when everybody’s calm
  • Get some help

With the Navigator, it was not really an issue of his asking questions. He announced he wanted to end his life because “he was stupid because he kept getting sent out of the classroom because he couldn’t do the work.”

I would have preferred questions over his just coming to that heartbreaking conclusion all by himself.

This happened only six weeks after we received the diagnosis and his dad and I were still developing our own understanding. We were not ready to have the conversation.

Yet, the conversation had to take place because our child was in pain and we needed to do something about it. We waited for the weekend (“do it … when everybody’s calm”) and sat down and talked about his autism diagnosis.

I think we did pretty good not using too many technical terms, and we really emphasized all the good things that came with the way his brain was put together.

We were specific, as much as we could be in the early stages of our understanding, about the gifts and challenges he experienced. We also talked about how we would work as a team on his challenges, giving him tools and strategies to eventually manage them on his own. 

We continue to talk about his strengths to this day, identifying examples of what he can do really well and talking about people on television or famous people that also may have or had autism, and the successes they experienced.

He liked the idea that Einstein may have had autism.

Finally, we did get professional help, just to make sure we were on the right path.

The Navigator appeared comfortable with who he is, both his strengths and challenges. There are still behaviors we work on managing, and he generally does not resist doing the work and learning the strategies. He wants to learn.

Yes, he sometimes tried to use his autism as an excuse or crutch and we try very hard to curb that. Once he told me he did not have to get out of bed to go to school because Santa Claus knew he had autism. Um, wrong kiddo.

The truth is the conversation doesn’t really end.

Like conversations about avoiding drugs and alcohol, or understanding reproductive and sexual health, it isn’t a sit-down-one-weekend-and-you’re-done kind of thing.

As he grows and his developmental understanding becomes more sophisticated, with every challenge and every success, we try to weave it all into a cohesive tapestry that makes sense to him.

Our goal is 360 degree knowledge of himself that is based in self-love and constantly-reinforced total acceptance.

Here is an article from The Curly Hair Project on how to tell a child about their diagnosis. 

Click here for an excellent article on the question from Autistic Not Weird.

how and when