Monthly Archives: January 2015

The conversation–how and when to tell your child about Autism; our version

How and when to tell your child he or she is different and special is a huge topic of debate. I see it all the time on facebook pages. I generally respond- with a very condensed version of how we handled the conversation. I thought I had blogged about it, but apparently not. So here it is…..
The Brick was older, as ASD diagnoses go, when he was diagnosed. At five he got an ADHD diagnosis, and then at seven got a behavioral/mental health diagnosis. It wasn’t until just after his eighth birthday, and a year of us not being fully satisfied with the diagnosis and services, that he got an ASD/Asperger diagnosis.
As an SLP who worked with lots of little ones with Autism and Asperger I couldn’t believe I had missed it, but you know what they say; “If you’ve met one child with Autism, you’ve met one child with Autism.” And—that’s a whole other post.
Since the Brick was older, he was very aware he was different than the other kids. He learned differently, behaved differently, played differently, was, and still is, simply different. He would ask ‘why’ and until we got the Asperger diagnosis, we didn’t really know how to answer him; we did our best though. As we waited for our evaluation appointment, and all through the testing process, we know he heard the words Autism and Asperger, but never asked what they meant.
When we received the diagnosis, I cried. Not in fear, or sorrow, but relief. We had a name, now we could face it with knowledge and strategy! Within a week or so of receiving the diagnosis, the Brick had a rough day and asked what was ‘wrong’ with him. I fought back the tears and sat down with him. Hubs sat with us and we started talking. It went something like this…….
“You know how everyone has things they are good at and not so good at? Some people are good at math or reading or sewing or building things but might not be as good at cooking or gardening or writing. Daddy is really good with wood working and fixing things, but mommy isn’t. Mommy can sign and grow vegetables, but daddy can’t. (Brother) is really good at math and reading, but can’t keep his room clean. We all are good at some things and not so good at others.
Sometimes when we aren’t good at something we need extra help. If you can’t see well, you get glasses. If your teeth aren’t lined up right you get braces. If someone isn’t very good at reading they may stay after school to get help. If someone isn’t very good at cooking, they could take a class. If someone has trouble walking they may go to physical therapy and may even need to use a walker or wheelchair. Mommy, daddy and (brother) all wear glasses or contacts; we need help seeing well. We see people at (speech) therapy that are in wheelchairs; they need help walking and getting around. (Brother) needs help with his behavior because of his ADHD so we work with him.
You are great at building with LEGOs. You have an amazing imagination. You are so creative and funny. You are so good at figuring out how to make something work. But, you aren’t as good at staying calm when you are mad or talking with kids to make friends. You know what though? There are actually a lot of people in the world that need help learning some of the same things you need help learning. It’s called Asperger Syndrome. It is named after the man who figured out that some people are really good and this group of things, but need help learning that group of things. His name is Hans Asperger. And, you fit into the group of people he discovered. So doctors will say you have Asperger Syndrome. All it means is that you are good at some things, but need help with other things. And, you know what else? Now that we know that you fit into this group of special people, we can help you better. We love you for who you are, no matter what you are good at or need help with and we will always do our best to help you and find other people to help you if we can’t. OK?”
A few days later we Googled ‘people with Asperger’ and compiled a list of people he would recognize. Since he was a bit older it was easier to find people. If they were actors or actresses we paired them with a movie he had seen. If they were musicians we paired them with a song. And we definitely mentioned Satoshi Tajiri, the developer of Pokemon.
That is how we had the conversation with our son. It worked well for us. I know it helps him to identify with a group of people who are, more or less, like he is, to know he isn’t the only one, to know he isn’t alone and that others have the same challenges. Over the years he has identified with the good that Asperger brings him. He, at times, hates it and wishes it away, but that won’t happen and he knows it and we work through it.
We believe in speaking honestly with our children, at an appropriate level. What and when you have the conversation with your child is up to you. We believe telling the Brick the reality early on, facing the elephant in the room, has helped him, and us.