02/04/2010

World Autism Awareness Day.

The United Nations has declared April 2 to be World Autism Awareness Day. The object is to encourage:
'All member states to take measures to raise awareness about autism throughout society and to encourage early diagnosis and early intervention. It further expresses a deep concern about the prevalence and high rate in of autism children in all regions of the world and the consequent developmental challenges.'

I say that's pretty cool. People aren't all that aware of autism. They're not always aware what there is to be aware of, if you see what I mean. They don't know what autism looks like.

When people first meet my son, a seven year old with high-functioning 'atypical' autism, they have mixed reactions. Most of them think he's really sweet - he is - and a little bit weird - also true - and some say that his reactions are just extreme versions of what they themselves feel - sometimes true, but not always helpful! On the whole once people have met him they don't react strangely,they know how to deal with him, and they're accepting. He's a beautiful and loving child, no doubt that helps. But all the autistic children I've encountered were endearing in some way.

What awareness is also about though, is being able to recognise autism when you see it in the streets, and not responding negatively to it. Last summer, we were visiting the UK. One day we took a day trip to Ilkley Moor. Just as we were leaving the moor, a great big dog jumped at Max, with all the noise and enthusiasm these creatures can muster. Max feels about dogs pretty much as I would about giant spiders. He doesn't like them. It doesn't matter that they're small dogs, that they're nice dogs, that they're 'Oh but he's so sweet he doesn't bite he's really good with children'dog. So he screamed, climbed on his father's shoulders and screamed some more. The owner, a woman about my age, stood there with her mouth open for a full thirty seconds before recalling her animal. When she had, we tried to calm Max down. It took a while, and before we were quite finished, she snapped at us: - 'Aren't you going to apologise?' - 'Our son was afraid of your dog.' - 'Don't you realise how traumatic this was for me?' - 'He really doesn't like dogs.' - 'Then there's something psychologically wrong with him!' - 'Yes: he has autism.' You'd think she'd shut up then, wouldn't you. She screamed back at us 'You should have said so!!' and went off with her dog. Needless to say it didn't make our stay any easier. Especially as England is crawling with dogs and we had to negotiate a lot of side-walks, worrying all the time that Max would start screaming and we'd get in trouble.

We did get in trouble, but not because of a dog. Max was having a difficult day visiting a small English town (two much walking, not enough ice-cream) and ended up having a full blown temper tantrum, throwing off most of his clothes and having to be taken off the bus and carried back home. A woman who'd been in the same bus very nicely came back for us with her car. Max wouldn't get in. So a good citizen, having witnessed all of this, thought it their duty to call the police. We were questioned in the street. A policewoman looked at Max's back for alleged traces of violence. Eventually we explained, and either we were lucky or the British police are very well educated indeed. They knew enough about autism that they understood what was going on, and one of them spoke French, so could communicate with Max. And they gave us a lift back in the police car, which of course Max agreed to go in, because, autistic he may be, but he knows what's cool!

The strange thing about our stay in England, is that we didn't see hardly any autistic kids around. Or maybe they weren't wearing their 'I'm autistic' tee-shirts. No, seriously, when you've beee around autistic people, you learn to recognise some of their ways. Ways of looking at things, ways of moving, intonations, and ways of talking, if they are verbal. It's a bit like being pregnant and noticing all the women in the early stages of pregnancy around you, because they walk funny, or they don't eat the cheese in the buffet, all these little things that people who're not in the know don't notice.

So what do people do when they don't notice these things and recognise autism? They stare, and they take their children to play a bit further. Sometimes they frown at the parents: what kind of low-life would let their children make weird noises in public, flap their arms, take their shoes off? And children will also react differently: they'll go to their parents and complain that some weird kid can't speak properly and is following them around.

Given that, it's not really surprising that parents of autistic kids are reluctant to take them out to restaurants, or even playgrounds. But what they maybe don't realise, is that if autistic people were out and about more, they would get a lot more recognition, and hence acceptance. Sure, some cases of autism mean that it's just too hard to negotiate the outside world on a daily basis, but that's the minority. Most autistic kids - and there's a lot of them - are just a little bit weird, they relate to the world a little bit differently, and usually they and their carer will find a way to adapt to other people's version of the world. If the non-autistic people become a little more aware, this adapting will be a lot easier, more successful, and a lot less painful for everyone involved!

Reading through the list of events for World Autism Awareness day, I noticed that the first of the three listings for the UK was an Easter egg hunt, in Aberdeen, for twenty children on the autism spectrum. As well as the egg hunt they'll have a bouncy castle and a giant slide. That sounds great. But shouldn't non-autistic kids be invited too, so awareness can begin?

10 comments:

Zubeyde said...

http://www.ttb.org.tr/STED/sted1004/otizm.pdf

Philippe Pieri said...

Great post! The issue needs all the awareness-building we can muster. We all need to be better educated on autism. As a society, we are primitives when it comes to coping or simply behaving with autistic children.

Sandrine said...

Zubeyde: thanks! I wonder if any one who reads Turkish and knows something of autism could tell me whether this info is any good.
Philippe: Yes we are, and not just about autism, but anyone who doesn't quite fit the norm mentally or physically. I suppose the thing about autistic people is that there are just so many of them that we may also want to question what the norm is supposed to be.

Philippe Pieri said...

Here is the New York Times coverage of autism awareness day with profiles and testimonies:
'Today is Autism Awareness Day. From social awkwardness to a complete inability to communicate verbally, autism-spectrum disorders have wide-ranging symptoms. Here, six men and women speak about life with autism.
http://nyti.ms/ay7Umh '

Philippe said...

sorry for the involuntary multiple submits... The blog rejected my comments repeatedly and showed me an error message. I guess it captured my multiple inputs after all.

Marianne said...

We actually do this on purpose so that we get tons of comments ;) Thankx for the link, c'est top.

Jennifer said...

Terrific post. I wish this was something people talked about more openly. As you say, for those who are not aware, they often don't know what to say or do. They want to be helpful, kind, and supportive, they just don't know how. The disabled community is getting better about this. I have recently heard people in wheelchairs address staring children, explaining what it is and why they are in one. Refreshing.

Jen

Sandrine said...

Thanks Jennifer! I think it's a very healthy sign that things are getting a bit better that wheelchair users should speak out in every day contexts. It's harder for people with autism though, as one thing they tend to find hard is addressing others directly! But then you've got people like Temple Grandin,a scientist with autism, who are brave enough to get up on a stage and explain what autism feels like, and then write books about it. Hopefully, the more of us listen to people like her, and talk about it to others, the easier things will be for autistic people.

Nix said...

"we didn't see hardly any autistic kids around

We're there. (Well, I wasn't: I was hundreds of miles away and twenty years too old to be a child anymore. But still.)

I see a few, a very few, intermittently. But, well, a lot of us either like to stay indoors out of people's way, or we like walking in really lonely places where there's nobody around. In neither place are you likely to see us. (I ran into one autistic teenager in the North York Moors Chamber Music Festival, accompanied by his mum, probably there because music has all those lovely patterns in. Much more severely afflicted than me, even when I was his age. Instantly recognisable, even from gait alone.)

"Don't you realise how traumatic this was for me?"

"Yes, madam. We do. It wasn't."

Sandrine said...

Thanks for your comment Nix! I get the point about autistic people wanting to avoid crowded places - I certainly wasn't expecting to run into you or other grown ups at the playground! (although we were in Leeds, so maybe not so far?) But wouldn't parents take their toddlers out for some fresh air, exercise and seeing other kids? I know Max always loved going to the playground, and in Leeds, we had to take him everyday, as a treat, to make up for the other stuff he had to do that he didn't like. But he did also get overstressed there on a couple of occasions (end of the day) and had a few meltdowns... Looking back on it, we didn't manage the whole travelling thing very well for him. Will do better next time!

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