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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Wednesday, October 04, 2006


It's No Joke

A snigger for the chattering classes

(This article was passed around by Kevin Leitch. It is from The Times, U.K.)

MY 11-YEAR-OLD son is funny and clever, kind and happy. He is also autistic. He doesn’t compulsively collect bus tickets, nor does he rock gently in the corner. But his condition will affect him for the rest of his life.

And the most scary and unpredictable time is the approaching teenage years when children learn about their condition and often tip into depression or even suicide. I think about the possibility of that every day, and what my husband and I can do to help him through it. And it comes down to self-esteem. Simon has the brains to have a fully independent place in the adult world — but only if he feels he is worth something.

Soon we will have to explain to him what he is, why he is different, why he needs support — and in a way that makes him believe in himself. Simon has no idea yet that he is different — and so far, his eccentricities appear to the children around him to be just that. Years have already gone into helping him to cope in the world, helping him to make friends and understand other people, managing his social relationships.

We are now at the critical next stage. It starts with saying that we are all different — certainly on the outside, and sometimes on the inside too. So far, so good. But the next phase is to explain the ways in which he is different. Finally, a name is put to it — autistic. The theory is, in a year’s time he will understand why he thinks and acts differently and, crucially, see it as something that, if not positive, at least isn’t negative.

In the past few months, it has become fashionable among smart metropolitans to use the term autistic as a catch-all to denigrate any but the most socially adept men. And it’s always accompanied by a snigger. It’s in the media, it’s at dinner parties, now it’s at a party conference. Somehow it’s acceptable and clever — though those same smart metropolitans would never refer to someone physically maladroit as spastic.

My son cannot help who he is, what he was born with. The most I can do is make him feel good about himself. But how can that ever be possible if, when the time has come, he’s already heard the term autism used by people who should know better as a cruel joke. It is fodder for the playground bully. And it will eat away at the self-esteem of any autistic child or teenager able enough to understand that it is an insult.

The author is writing under a pseudonym


Blogger ballastexistenz said...

What I'm surprised at -- and bothered by -- is that she hasn't apparently ever discussed it before, thereby leaving him to find out in the worst possible way (although he quite possibly already knows).

11:18 AM  
Blogger Natalia said...

I was wondering about that, too. I mean, I'm pretty sure I have read about young children who know they are autistic, know the word, and can articulate what they like about their own "forma de ser" ('way of being'), as well as what is difficult for them.

2:18 PM  
Anonymous mike stanton said...

I was surprised as well. I left some advice on the comment section. I hope she sees it.

6:31 PM  
Blogger elmindreda said...

Yes, it's like she's already made up her mind about how he will react to finding out, if indeed he doesn't know. That certainly won't make the telling any easier.

6:15 AM  
Anonymous Bonnie Ventura said...

Here's another way of looking at that, Amanda: if you're a Jewish family living under false papers in Nazi Germany and pretending to be Christians, do you discuss it with your kids while Hitler is still in power, or do you wait until the war is over?

My parents expected that society would become less prejudiced over the years, and they never said a word about autism to me. I didn't figure it out until a few years ago, and I'm still struggling with the emotional fallout of suddenly discovering that there are large numbers of prejudiced people who think I never should have been born and who would happily kill millions like me.

I can't imagine putting the burden of such knowledge on my 16-year-old son. Yes, I'll tell him if that becomes necessary for his self-preservation, but first I'm going to do everything I can to change the world so that it won't be like this when he is older.

And we are making a difference. Amanda, you were posting on Aspergian Island when I compiled my original list of 50 pro-neurodiversity websites two years ago, and you remember how it was: I was doing Google searches for weeks, and I couldn't even find 50 sites on the entire Internet that had anything positive to say about autistic people. I had to cheat and take multiple pages from and a few other domains in order to reach my intended total of 50.

Now we have 50 pro-neurodiversity bloggers on Autism Hub alone, and many more people on the Internet who are sympathetic to our views. We also have conferences such as Estee's and some amount of media coverage (although we still need more). I feel much more hopeful now than I did two years ago.

7:45 AM  

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