Friday, April 04, 2008

UN World Autism Awareness Day

Tom, Eleanor and SamApril 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.

23 comments:

Melissa said...

For me it's a difficult matter. Ill childrean are just children. But some experts are quite right when they claim that modern humanity kills itself because bad gens carriers survive.

Yellow said...

Mel, I remember your saying that it wasn't a huge problem for your eldest til he went to school. At home you were used to his reactions, in the same way that any parent can handle their kids (well, most of the time), but at school it became very obvious, because his actions were so out of line with the other kids.
Do you know, it's the same for me. We're all coming to visit you shortly, me and my kids, and I don't say "We're off to visit my sister and her three autistic kids!" Tom's just Tom, Elly is Elly, and Sam Sam is Sam Sam. And my Rebecca is a devil in a dress, and TJ is as changable as the weather.

Anonymous said...

My sister has the same problem with her child's friends and parties. He doesn't get invited to any parties, even the child he is still friends with, as the parents see him as a bad influence. ADHD and educationally behind, but very similar description and problems to those you mention.

On another track - isn't the theory that there is an autism scale. We are all somewhere on it, with most people being somewhere in the middle and "autism" being one extreme.

lastcrazyhorn said...

The scale is called the "Autism Spectrum."

How come I haven't found this blog before? What's up with that?

Did Melissa say that something about autism being connected to bad genes? Someday I'm going to write a post purely on the positive aspects of being an aspie . . . and I'll try to make the post less than 10 thousand words . . .

ourfriendben said...

Great post, Melanie! My little niece and nephew have Asperger's (nephew) and undiagnosed Asperger's-like behavior (niece), and they've been through a lot of what you describe. Your comment about boredom is particularly true and touching. I'll never forget watching my brother, whose top-notch doctors had insisted that he constantly keep my nephew engaged, reading a story to him for the hundredth time. My nephew got an expression on his face of almost holy suffering and resignation, as he endured my oblivious brother's reading because he loved him. Your comments about Asperger's kids needing and wanting friends are very true, as well. Thanks for posting this!

Mjohnson said...

I hope I'm not guilty of stereotyping, but is it a coincidence that world autism day is on 02/04/08. A date with a pattern in it:

02-04-08-16-32-64

femsc said...

I didn't know it was World Autism Awareness Day until I read it here.

I wonder if an 'awareness day' made any difference to the way autistic people are perceived by their peers?

Somehow, I doubt it.

Fran

Lesley said...

I'm probably trying to teach a grandmother, or at least, a young mother to suck eggs here .... but have to give a mention to Donna Williams whom you can visit at http://blog.donnawilliams.net/

In fact..... it may have been from her or maybe from her husband Chris, that I first found your pages?
Whatever... try this video for size, but have a tissue ready! http://gowen.org/autism-in-praise-of-difference/

Killi said...

I had no idea about this. I have admiration for those bringing up children who are more difficult than children usually are ~ mine were/are hard enough, even the lad that chose not to live with me is causing us heartache, worry & fear for his future.

A friend of mine who works with special needs in Norway was encouraged to read "Curious Incident of the Dog in the Night Time" & I think it should be required reading for everyone to give an insight of sorts.

Lisa said...

Melanie~Recently my friend's son has been diagnosed as autistic.
I've been reading and trying to learn more to help her out in any way that I can.

Stopped by to let you know I actually did start a blog.
Oh my.....looks as if I have quite a bit to learn before it is really up and running and has anything of interest on it.
Thank you for the push though to actually do it.
http://shadybanks-lisa.blogspot.com/

I'll keep playing with it, and post some pictures of the garden and hens as soon as I can.
Thank you again.

colouritgreen said...

things improved a lot for us once we started home ed, and stopped *trying* to fit in with the system.

Katie said...

Hey Melanie, not sure if you're already aware of this but there is a great book called Yoga for the Special Child by Sonia Sumar that you might be interested in. After training with Sonia, I've begun doing yoga with autistic kids with really positive results. So far I've worked with two kids with Aspergers and one who has much more severe autism and is non-verbal. I'd be happy to share more if you're interested.

Skipweasel said...

I don't think of your kids as being different, Mel. They rub along fine with ours!

Tess said...

Mel, I'm only just now catching up on my reading. I really like the way you cover this and the way you just get on with your life and mothering kids who happen to be a little different.
So sad about the lack of friends.
I don't know much about autism - I hadn't realised for example that from your experience and from following up some of these links that more than one child with some degree of autism in a family is not unusual. Anyway, great to read this - in it's sheer matter-of-factness it is really inspiring.

babs m said...

I agree with yellow. School has been a huge issue...because it's so much more structured than home. I didn't know about your autists....Mine are too. Makes me feel like we have something in common--and that gives me a great deal of honor. Good onya!

Woody Wilbury said...

Hi Mel

Sorry to be a bit late with this; I haven't been paying attention. It's a fairly obvious comment but it's interesting that all 3 of your children are boys. Boys are something like 8 times more likley to have these conditions than girls and it all relates to chromosomal disorders in development. All embryos start off female and during development 'maleness' develops through chromosomal changes. So it is a truism that all us males are, quite literally, "damaged goods", hence the greater proportion of boys affected. You probably know all this already but you can see Asperger's traits in most men to some extent; I certainly see some in myself. Oddly, my daughter who has a learning disability too, also shows a few such traits but now manages to live on her own with some suppport. Hang in there (like you have a choice?!); something will come good but it may take a long time.

Melanie Rimmer said...

Hi Woody. Actually one of them is a girl. And I don't need to hang in there and wait for something to come good - it's all good already. My kids aren't damaged goods, they're not ill and they don't have bad genes (as the first commenter implied). They're just perfect.

Leslie - I'm familiar with Donna Williams' work and website, but I've never met her. I was at university with her husband, Chris (although everyone knew him as JD back then). I'd love to see Chris again, and I'd like to meet Donna.

I was trying to express in this article that for us it's just not a big deal. I know that some families have a really tough time with kids who have more severe problems than we have to deal with. But on Autism Awareness Day I hoped to increase awareness that Autism is not always necessarily a disability. I tend to the view that it's a variation, like being left-handed. In some circumstances being left-handed can make life harder, but only because tools such as scissors are designed for the right-handed majority, not because being left-handed is inherently worse. But in some circumstances it's a big advantage. My husband, Ed, is left-handed and he can beat fencers who are technically better than him just because they're not used to fighting against a left-hander, but he's quite accustomed to fighting right-handers. Autism can be like that. It makes things tough at high school discos for example, but one day my kids will blossom in a university maths, engineering, or physics department, or perhaps at a Star Trek convention.

Woody Wilbury said...

Apologies Mel, I didn't mean to offend or get it wrong. And of course you're quite right that your kids are perfect. I was once asked whether I'd have prefrred our daughter not to have her learning disability, and that was a really hard question. On the one hand, of course I'd prefer her not to have a learning disability and to have the same life opportunites as people without a disability. But on the other hand, it's part of her and who she is and without it she wouldn't be her. On balance, and it's a really hard question, I leaned towards not being able to change facts and loving her for who she is. Take care; I'll try harder.

Melanie Rimmer said...

No worries, Woody. I wasn't offended. And hey, one thing my kids have taught me is how to cope when people blurt out what they're thinking without pausing to phrase it in the most tactful way possible!

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