Portraits of Autism #1

I'm in the waiting room at my son's special education autism centre. A teenager walks in, followed by his dad. The boy makes straight for me and, with a big grin on his face, says he wants to drink the can of coke that's on the table next to me. I'm embarrassed, I want to tell him that it's not coke, it's got pencils shavings in it, but I don't know how to say that in Turkish. So I just tell him that it's empty. That it's rubbish. His dad comes up and provides me with  few key words. He shows him the rubbish bin. It's like that, he says. The dad looks quite relieved that he doesn't have to wrestle my coke from his boy. The boy, still smiling, then asks me if I can give him a cup of tea instead. He's thirsty. He doesn't want to wait and I'm clearly a drinks person. I say he can get tea in the kitchen upstairs. His dad confirms, and they both go up.

This boy had a pleasant, open face. He spoke fluently, if not well.Yet, I'm ashamed to say, when he first walked towards me, my first instinct was to shrink from him, retreat into my headphones. What's worse, a few years ago, before I knew anything about autism, if I met someone like him in the streets, I would have been scared. I would not have tried to explain to him, in my broken Turkish, that no, I did not have a cup of tea in my handbag, that no, he probably wouldn't find one in the bin either. I would have been offended, and weirded out that his dad had not come to my rescue, that he had let his son finish the exchange with me, on his own terms.

My son is like this boy in many ways. He approaches people, mostly young women and little girls, and flirts with them outrageously. Sometimes he's a bit in their face, like that time he thought to impress a girl by blowing a bubble from a gum at her, but hadn't gotten around to learning how to make bubbles. He basically stuck his tongue with the gum at the end of it within inches of her face... Now he's cute and he's still quite small, so people forgive him. But that's clearly not going to last. In a few years' time, he'll be a teenager, then a man. No doubt by then he'll have picked up more social skills. But this is a real worry. Will he be seen as a nuisance, or a threat? And as the youth and cuteness disappear, will people just stop cutting him slack for his weirdness? Will he one day, no longer charm people, but freak them out instead?

There's not much I can do to assuage these worries, except, of course, by making sure he gets as much help as possible now, so that can learn to emulate the social interactions of neuro-typicals. Not much I can do except write, so that as many people as possible get to know about Max, and about children and adults like him. Blogging is a wonderful thing. It reaches out to people in an intimate way. If you read something on a blog, you take it seriously, even if you disagree, you give it your thought and your sympathy, or your laughter. You share it.

So although I don't want to come over all preachy, I'd like to carry on talking about what it's like to live with autism, what kind of progress you can expect, what the best and worst times are like. Just so you know, when you come across someone like Max. Check here again soon for another portrait of autism.

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Looking for Blue Sky said...

I have been there as well: am familiar with children with Downs Syndrome, and assumed that I would be fine with any kind of special needs, until I met a particular child with autism, she keeps asking questions, she can't stop, and I would answer until they got personal or someone would distract her. I actually did not know what to do.

Imcombobulated said...

I wonder about this a lot too, Sandrine. Jude gets so much attention right now because he's got angelic little curls and such vibrant read hair... and he's got the cuddly chub of a 2.5 year old. But when he's older, will people overlook his shrieking? Will he still be doing it? When he grabs french fries from strangers as we walk past them, will they yell at him instead of chuckling over his cuteness?
Having worked with teens and adults with autism (and other disabilities) I know that as kids with disabilities age, the world recoils from them so much more than it does when they're little and cute. At least, it does now. I think (and hope) that as more people become aware of things like ASD, more people will be at ease around people whose behaviour and mannerisms don't exactly match their own. The more we all talk about it, about our awesome kids who have so much to offer, the more people will learn to accept that there's nothing to fear in a person carefully, caringly straightening their crooked collar as they pass by...

Imcombobulated said...

And Imogen? What will it be like for her? Her autism is a bit less visible than her brother's, than Max's. Will people exclude her for being odd, unusual? Will she struggle to get and hold jobs because she doesn't observe certain social customs? Will she have learned to mimic the rituals of NTs to the extent that she's able to pass unnoticed? So many questions. Sometimes I wish I had a crystal ball. And a magic wand.

Sandrine said...

Thank you both for commenting! As parents we're taught how to help our kids appear more 'normal', and we're led to hope that one day our children will be able to pass off as neuro typicals. A lot of the treatment they receive is about that, I feel. And I'm not saying it's a bad thing. Maybe the world could do with a bit more variety, but I still want my son to be able to communicate as best he can and be as independent as possible. But the upcome of this 'normalising' education is that no one really bothers to educate the neuro-typicals about what autism looks like! So it's no surprise we just don't know how to react when we meet an autistic adult. No one educates them except people like you, Kim, with the positive image of an autistic personality you are putting forward, and all of us who blog about our children.

Jean said...

This is a big worry for me too. My autie son is only 6 and is really cute so his odd behaviour is tolerated.
Like you, I foresee a time when he is just viewed as being weird or threatening.
I get a lot of reassurance when I see my 17 yr old autie nephew tho. He screamed for the first 6 years of his life...now he can cope pretty well with social situations due to education. He knows what is appropriate, even if he doesn't really understand why.
Early (and plenty of) education seems to be the key.

@jencull (jen) said...

Like the previous commentors I have thought of this also. Currently HRH is 2.5 years old and will get away with a lot. There is also the fact that I am so used to his ways that I don't even notice a bit of hand flapping etc anymore.

I don't know Sandrine, I blog too in the hopes that maybe we won't be the ones making all the effort and that the world can meet us just a little bit of the way.


Sandrine said...

Jean, that's so encouraging. Yes, it looks like education can achieve a lot. I see it with Max who is getting better at interacting with other kids all the time.
Jen, I think with a blog like yours, which has a large audience including plenty of people who're parents of autistic kids, there's plenty of hope. I'm joining in. Between the lot of us, I'm sure we'll get some results!

Anonymous said...

You see, so moved was i by #2 that i had to come and read #1. i look forward to this series of posts. i think i will learn a lot.


Lee Chalmers said...

My sister-in-law has some form of autism. She is 41. She often gets mistaken for a child when her mum is trying to get her into the zoo and we like that. She is happy, she lives a full life in a Steiner community in Scotland. Before she went there, at age 7, she was in an out of hospital, on a multitude of drugs, didn't sleep, drove her parents totally mental. A few months at the Steiner community and she was off the drugs completely. She was 'brain damaged' at birth so it is not pure autism but your posts remind me of her. She is fabulous and I, as someone who scores high on an aspergers test, enjoy her company immensely as she demands much less 'presence' from me than others do.

Sandrine said...

Sounds like your sister in law was extremely lucky to find this place! I get the feeling that with so many autistic people the majority of their problem is caused by not fitting in to their environment. We try to fix it by changing them, teaching them to adjust, but sometimes the best thing may simply be to change the environment - either find one that's better, as in your SIL's case, or try to make what we've got a bit easier on those who are autistic.

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