Tuesday, October 14, 2008

What I Saw Today

Later this month, my mother is (with my assistance) presenting a conference paper about the 'war on autism' metaphor. It's a very important topic, and for the most part I've enjoyed helping her prepare her conference paper. But today...
Today, my mother said she wanted several pictures from the Autism Every Day video. Because she doesn't understand computers very well, I volunteered to get the pictures for her. And to do that, I had to watch large chunks of the video. And you know what I saw?
I saw a child kiss her mother, as her mother complains about her 'always wanting attention'. I saw that same child later being prompted to say 'I love you' - the mother would rather her say a meaningless prompted phrase than spontaneously show her love. I saw that same girl come up to her mother when she was talking about something upsetting and say 'what are you doing?' in a dismayed tone, then walk over to look out of the window as her mother talks about contemplating murder/suicide in preferance to a bad school placement (I've been in bad school placements, and they're not pleasant. But they're not worth dying over.) I saw a child being filmed having his diaper changed, and his mother commenting about how much she hopes he'll be toilet trained soon. I saw a kid trying to engage his mother in interactive stimming, and her saying 'no' and indicating he shouldn't stim. I saw parents pinning their only hopes on a slim chance of a cure, rather than learning to live with a different kind of child. I saw the stark dichotomy between kids being kids and parents talking tragedy.
And my reaction was the same as it was when my teachers treated me unfairly, when my classmates in a new school rejected me for no apparent reason, when people in various extracurricular programs expelled me or told my parents to take extra measures to 'control my behavior' in those programs. Why don't they like me?
Some people think this is just parents expressing their feelings, to raise awareness in order to help their children and others like them. That's not what this is. This is hate. Oh, sure, they 'love their children' - they don't really. Not in the ways that matter. You don't treat people you love like that. If they were talking about neurotypical kids like that, very few people would consider them loving parents.
Autistic people are supposed to 'lack empathy'. OK, if you guys have empathy and we don't, prove it. Watch that video, and imagine they're talking about you. Imagine your parents saying things like that about you, or watching someone else say those things about traits their kid shares with you. If you're part of another group that is discriminated against, imagine watching people say things like that about your group in the presence of children of that group. Imagine fathers talking about how they hope they can get a sex change operation that can make their daughter a boy (not because she is actually a boy inside, and has said so, but because they'd rather have a boy). Imagine white parents talking about thinking about doing a murder-suicide with their black child because the school system is segregated. Imagine straight parents talking despairingly about how their gay kid has had 'so much stolen from them', because, among other things, they'll never marry a girl and have kids with her.
Oh, you may think it's different, because autism is different. It isn't. Yes, we can't do many things neurotypicals can. But our worth, our happiness, does not hinge on that. It should not hinge on that. We deserve to have parents who love us, not their images of what we were supposed to be. We deserve to have parents who pay attention to our expressions of love for them, rather than demanding something artificial instead. We deserve to have parents who can talk about our futures without dread and tears, who can see a future where we remain ourselves and get treated with respect.
Luckily for me, I had that. But so many kids do not.

PS: I'm really upset right now, so I didn't phrase it nearly as diplomatically and carefully as I usually would. If you are a parent of an autistic kid and are offended by this, just think: your kid might someday write blogs like this. Try to make sure they can truthfully say the second-to-last sentence 'Luckily for me, I had that.' If you're thinking 'I just want my kid to be able to write like you can' and using that to justify all this, then remember - what's the point in teaching your child to communicate if you're not willing to listen?

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Blogger Lindsay said...

Hi, Ettina,

About the "war against autism" metaphor, have you read The Siege? My mom used to have it, and I'm wondering if it's worth tracking down and reading, if only for the sake of critiquing the war metaphor.

Also, I gave you this blog award!

8:40 PM  
Blogger wrongshoes said...

I'm so happy I found your blog. Your insight is invaluable. I just wrote a post on my blog about an interaction with a (presumed) autistic boy at the park the other day. I'd love to know what you think.

7:04 PM  
Blogger Jenny said...

I just have some questions for you, I understand what you are saying, but what do you suggest us parents do when our children seem to be so unhappy and can't communicate their needs? Is it "hateful" to try to give them a life where they are happier? I see your side, but how do we help our little children who are sick physically? I really do want to hear your response to these questions. I am not trying to be defensive. I want to love my child no matter what.

11:37 AM  
Blogger Ettina said...

OK, probably replying way too late, but hopefully you'll see this, Jennifer.
It is not hateful to try to help your child. The problem is that focus on normality can interfere with truly connecting with and helping the child.
If your child is unhappy, try to figure out what is making them unhappy and help them deal with it. Maybe they need some sort of accomodation, maybe they need some kind of therapy, maybe they need something taken away that is bothering them.
If your child can't communicate well enough to meet his or her needs, by all means, do what you can to help them find the way to communicate. Whether that is speech, sign, typing, PECS, it doesn't matter as long as they can say what's important for them to say.
If your child has health problems (and it does seem like some health problems are more common in autism) then give them the treatment they need to be healthy. It may be a special diet, it may be some medication, it may be some other kind of treatment. However, be careful with this - always seek out a reputable doctor to advise any medical treatments, because the potential for an untrained person to cause harm is tremendous.
But when a child laughs with joy, what does it matter if their delight is at the sight of their fingers fluttering in front of their eyes? Or if a child seems content alone, what does it matter if they don't play with others? Always remember that you're not trying to change your child. He/she is, and will always be, different. You're trying to find a way that your child can live with that difference in happiness.

4:09 PM  

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