UN World Autism Awareness Day

April 2nd was the first UN World Autism Awareness Day. Sorry this post is two days late, but I only found out about it yesterday.

All three of my kids have autism. To be precise, one has a diagnosis of Asperger's Syndrome (a form of autism), one is undergoing diagnosis and one has undoubted traits but doesn't need any additional support in school so we're not bothering with diagnosis.

Autism is a neurological condition that causes a complex and variable set of symptoms. I'm not at all convinced it is just one condition, but I rather suspect that in future scientists will identify a range of different conditions, perhaps with totally different causes, that just happen to have overlapping symptoms.

My kids are very intelligent. I know all parents think their kids are geniuses, but mine really are smart kids. And yet they struggle terribly to understand things that even the dumbest kid can figure out, such as how to play with another child, how to open a conversation, whose turn it is to speak in the conversation, and when the conversation is over. They aren't getting very much better at these things as they get older, but the other kids they know are getting less tolerant of it so they're finding it harder to make and keep friends. It's sometimes said that autistic people are natural loners, that they don't want or need friends. That's not true. Many autistic people long for friendship but they find it very hard to strike up and maintain friendships with non-autistic people. It breaks my heart to hear of the break-ups and fallings-out, and watch their clumsy attempts to socialise. One year I phoned almost every number in my address book before I could find just two willing guests for a birthday party. I feel very helpless about it.

They seem to experience boredom as acute suffering. They just cannot display patience or tolerance for waiting or having nothing to do. It's a bunch of fun going on public transport I can tell you. Waiting at the bus stop or train station is guaranteed to have them fidgeting, poking each other, or climbing and running like monkeys. When the bus or train arrives that's interesting enough to quiet them for a minute or two, then they're bored again and start squirming or shouting or otherwise annoying the other passengers. Threats and bribes make little difference. Bringing books, MP3 players, hand-held games consoles or card games is the only solution for unavoidable long journeys, and even that's not a guarantee of good behaviour.

My kids have extremely strong reactions to stimuli. They're all terribly fussy eaters, for example, and no amount of behavioural approaches make the slightest bit of difference (star charts, rewards, discipline, no-pudding-til-you-finish-your-firsts, etc). My mum was convinced I just wasn't being firm enough, and so engaged Tom in an afternoon of cooking. Tom had great fun helping nana make pasta sauce and cook vegetables, but then wasn't willing to eat what he'd cooked. Mum forced him to eat it, and he vomited on her. It's not just childish pickiness - it's part of the condition. They're very sensitive to smells. I mean really astonishingly sensitive. If I peel an onion in the kitchen Tom will come through from the living room saying "I can smell onions, are you making dinner?". They're also sensitive to sounds, and react to loud noises as if they were ten times louder than they really are (unless they're making the loud noises themselves, of course). I took them to the theatre once and whenever the audience applauded all three of my kids put their hands over their ears because the sound was painfully loud. I've often stood in public lavatories asking everyone who came in "Would you mind not using the hot-air hand dryers? My kids don't like the noise". Tiled public toilets echo terribly, and the kids would become hysterical when trapped in a small (bad-smelling) room with a deafening echoing roar. I used to try to take Tom swimming when he was a baby but he hated it and would go purple through crying so hard before we ever got in the water. I now suspect the weird loud echoey sound of the pool, and perhaps also the chlorine smell, was responsible for his reaction.

But that's just my kids. There are other types of autism with other features. And I could go on for hours about other aspects of autism that my kids show - poor coordination, list-making, echolalia, obsessions, compulsiveness, rituals, hyperfocus, idiosyncratic speech, and so on.

So how did I miss Autism Awareness Day? You may not believe this, but I don't think about autism that much. If you asked me to describe myself I could fill pages of self-descriptions before it occurred to me to describe myself as "a mother of three autistic kids". In almost 800 blog posts so far I've mentioned it three times (four now). But I've written post after post about my kids without mentioning autism or Asperger's. It's just normal to us. I don't think of the kids as being autistic most of the time. They're just my kids. My beautiful, intelligent, talented, funny, loving, naughty, exasperating, creative, kind, disobedient, crazy, lively kids. Just the same as everyone else's kids.