April is Autism Awareness Month
Posted by Gail | Filed under Thinking Out Loud
I recently did a radio interview with John Tory on Talk 1010 on the subject of Autism. Malcolm was diagnosed when he was four and it’s been an interesting journey dealing with both the emotional and social aspects as well as the significant language implications. John asked me one question that’s kept me thinking. He wanted to know if I was using my celebrity to bring more awareness to this issue.
I responded that for most of my experiences dealing with autism in my own family and with friends I’ve just managed to cope… no time for more than that. I certainly admire people who are active in building awareness and shining the spotlight on issues. But I’ve never seen myself as an activist (except when it comes to the frickin’ credit score, which I see as so destructive). Nor have I seen myself as a celebrity.
But I am a mother who has had to cope. I’ve tracked some of my journey with Malcolm in a book I’ve been writing called A Mind Of My Own. Today I’m going to share the introduction. Depending on the responses (interest or no interest) I’ll continue to share what I’ve written on the subject.
I wrote this for Malcolm and for me: I needed to put it on paper because that helps me to process. And I wanted Malcolm – who is a visual learner – to see how I saw him and to help me see him the way he sees himself.
A Mind of My Own: Introduction
Imagine having a child who is different from all the other kids. He takes forever to start speaking and when he does, he does so in an odd, formal way, echoing what he’s heard, or memorizing great gobs of dialogue from videos or TV. He can read fluently, even the most complicated texts, but seems not to understand even the simplest words. He rarely starts conversations and when he does speak he repeats his own sentences over and over.
This child doesn’t deal well with change. He has an intense need to keep his routines. It’s Tuesday so he has to wear his red shirt or something awful will happen. Try to make him wear blue and the screaming will make your head ache. He has difficulty with transitions, so visits to the dentist, school outings and even trips to the grocery store can be triggers for fury. And he demonstrates ritualistic behaviour, always bathing at exactly the same time every day, always brushing his teeth at 7:35 a.m.
He’s very sensitive to sound and smell and bright lights and the feel of things. So sensitive, in fact, that it feels almost like pain. When he is upset, for any of a variety of reasons, he’ll rock, or he’ll spin, or he’ll chew his clothes or his hair or his hands.
While both his visual and auditory memory is strong, language is confusing. He doesn’t seem to be able to answer any of the “W” questions: “what,” “when,” “where,” “who,” and “why.” In fact, he may not even be able to ask a question; instead he makes a statement that ends in the upswing of a question’s cadence. He thinks in very literal terms and can’t cope with abstract concepts. And since he listens selectively, you may be tempted to have his hearing checked.
Welcome to the world of Asperger’s Syndrome. My son, Malcolm, has Asperger’s and I’ve been walking a long and very winding road with him for several years now. I’ve learned a lot. And one of the things that has become most obvious in that while we’ve learned a lot about the condition, there are still a bazillion people out there that haven’t got a clue about what Asperger’s is and how to cope. If I could only tell you what I know…
So here’s our story. It’s not a technical manual that explains diagnostics or the genetic background or the pathology (although I do try to decode some words you may run into). It’s what Malcolm and I have faced together, and what we’ve learned together. I’ve tried to pass on the hints I found most useful, and share both the frustrations and the joys so that as you take this very long and winding journey with your own sweet one, you’ll know you’re not alone.
I hope that you enjoy our stories and that you learn something from our trip. Good luck on yours.