Monday 18 April 2011

An Autism Outsider | Stuff With Thing

I have a guest post today from the fabulous Deb of Science@Home. I’ve long admired Deb’s blog and stand in awe of the way science is made approachable for not only children but adults like myself who have little understanding of scientific stuff.

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When Leechbabe offered to let me guest post on ‘something about autism’ I thought it wasn’t going to happen. My closest approach to autism is through the children of online friends, somehow I seem to have found quite a few Mums-of-kids-with-autism to relate to. I have known one or two students in different schools with autism, but never taught any of them myself. What could I possibly say or add that would be relevant? Usually I stand in awe.

And then I thought about it a bit more and I realised that couldn’t be right. The current estimate of autism incidence is about one in a hundred.

1 in 100.

I know far more than a hundred people. So do you. Chances are, we know a lot more people on the spectrum than we think we do. There are probably three or four kids at your local primary school who have autism and you almost certainly have a colleague, relative or friend.

It doesn’t work out quite that neatly of course, there are clusters in families and professions, and you aren’t going to find deeply autistic people hanging out at the local coffee shop. But on average, you know someone with autism.

But how do you know? It’s not as if they walk around with a bright red ‘A’ stamped on their foreheads. And I know enough about getting a diagnosis to know it’s not simple and straightforward even for experts. There’s a reason it’s called a spectrum – just about everyone on it has autism in their own unique way.

They might not even know themselves. The rate of diagnosis of autism disorders has increased dramatically in the last 20 years, but there is quite a bit of evidence that the rate of autism has remained fairly constant. The increased diagnosis is probably because of changing definitions and doctors becoming more familiar with the disorder. The practical meaning of this is that there are a lot of adults out there who have lived their whole life with ‘quirks,’ ‘habits,’ or ‘social awkwardness,’ who would be diagnosed if they were children today. There are middle aged people being diagnosed for the first time. There are both adults and children who don’t have easy access to specialists to be assessed. And if they don’t know, how would you?

You can’t. As a lay person, even as an experienced parent or teacher or paediatrician watching someone casually, you can’t possibly know if they have an autism spectrum disorder. The best you could do is guess, and some people’s guesses are more likely to be right than others. Most people won’t even think of it as a possibility, although the people reading this blog are probably more aware than most!

Have you thought autism could be the reason your weird colleague sits by himself? Or the kid at school who is far too old to be having tantrums? The annoying preschooler at the library who was copying what everyone said and wouldn’t stand still? The twelve year old who really should be able to do a sleepover by now? That kid whose parents let them live on cheese sandwiches, it can’t possibly be healthy. Someone pushing a shopping trolley all over the place because they’re only stepping on the black tiles, haven’t they grown out of that game yet?

Sure, they could just be awkward, rude, badly parented, indulged, tired, nervous, hungry, or out of sorts for all sorts of reasons you don’t know about. You could be impatient, rushed, stressed, tired, hungry or out of sorts. Or they could have autism.

You’ll probably never know. All you can do is remember that there might be more going on than you know, and have compassion.

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Thank you Deb for guest posting at Stuff With Thing and for anyone who would like to learn more about the wondrous world of science, be sure to visit Deb at Science@Home.