Tuesday, December 15, 2009

It's Okay to Have Autism

I've been thinking a lot about this book I want to write, so I've been looking into what's out there.  First I was just looking for children's books that tell autistic children about their diagnoses.  But today, I stumbled upon various online conversations among parents of autistic children, discussing when and how to explain all this, and it makes me think I'm in way over my head.

These were conversations among parents of older children and tweens.  Many of these kids were tweens before their parents started having The Talk.  Many of the parents repeatedly asked their children over the years if they wanted to know why they went to a special class, or why they were different, and reported that their children didn't seem interested in the subject until they perceived that they were unusual, generally after age 9 or so.

The National Autistic Society (UK) offers, not very helpfully,
It is a very personal decision as to when families decide to tell a child about their diagnosis it all depends on personal circumstances. Some children are told when they are young as they become aware of their differences. In other cases parents/carers feel they should wait until their child is a little older so they will understand the diagnosis better.

I know there is much debate over when to tell a child he is adopted, but the approach that always made sense to me was for the adoptive parents to talk about it from day one, making "adoption" a regular part of the child's vocabulary.  Even if the child won't understand the concept for several years, he won't wake up one day and suddenly be informed that his parents aren't his birth parents, and that everything he thought was true somehow wasn't.

Intuitively, I feel like telling a kid he has autism should work similarly.  This will be a conversation we have over and over throughout early childhood until it makes sense to Ryan.

And yet.

Last night at bedtime, I was reading Ryan "The Okay Book" by Todd Parr.  It's a very simple book about accepting differences.  "It's ok to be short.  It's ok to be tall.  It's ok to wear two different socks.  It's ok to be a different color.  It's ok to put a fish in your hair."  It occurred to me that it would be appropriate to insert, "It's ok to have autism," but the words caught in my throat and I choked and just stuck to the text.  Why was that so hard?  Was it just because there was no cute little picture to point to as I said it?  Was I being self conscious?  Was it just too much to deal with at bedtime?  I use the word "autism" in Ryan's presence all the time, so why did I feel so strange about throwing it into his bedtime story?

It's definitely ok to have autism.  It's ok to be different.  I don't know about all that putting-a-fish-in-your-hair business, but maybe that's just my own bias.


  1. That's my favorite book, though I always feel the need to add a comment after the fish in your hair part -- "but please don't!" -- because that is exactly something my kids would do. I'm also not big on the eating bugs part.

  2. I love that book, too!

    I think that approach makes sense. It's how I'm trying to approach the world with Genny about the stuff of women's bodies.

    My mom never shared those kinds of things until the last minute, but Genny, at 5, already knows about what menstruation is and stuff. I think it's the only way to go about it for me.



Keep it civil, people.