Whose Autism Is It?
I've long been annoyed at two quirks of language by some non-autistic parents of autistic kids - insisting that autistic people should be called "people with autism", and calling themselves "autism parents". Both, independently, are problematic for reasons too long to get into here.
But just recently, I thought about both of those language quirks together. Particularly, the strange fact that the same non-autistic parents who call themselves "autism parents" also tend to insist that their children are "children with autism".
People tend to use adjective-first language for descriptors that they feel are important to their identity, in my impression. If you look at non-disability descriptors, I call myself a white person, a woman, a university student, a psychologist-in-training, a creative person, an aspiring author, an asexual person, a daughter, a sister, and someday I will hopefully be a mother. All of those are descriptors that refer to aspects of my identity. In contrast, I tend to say that I have blond hair and blue eyes. Although I'm not offended if you call me a 'blond' or a 'blue-eyed person', I don't insist on that language, because my hair and eye color are not important to my identity.
So these "autism parents" clearly feel that their child's autism is important to their identity. Yet they don't think it's important to their child's identity. Why?
While reading an unpleasant blog by one "autism parent" (which I don't want to link to, because that means I'd have to look at it again), I realized something. This person acted like his son's autism belonged to him. By which I mean that his discussions of autism were focused entirely on how it feels to interact with an autistic child. Any discussion of his child's emotions tended to be couched in behavioral descriptions, such as meltdowns, rather than actual description of emotions. His reactions to descriptions of autism, too, seemed based on the assumption that those descriptions were meant to reflect how parents felt, not how autistic people felt.
Ever since my first significant encounter with a 'low functioning' autistic person, when I was 15, I've always wondered how anyone can know these kids well and really see the 'horror story' that autism awareness campaigns portray. Because, yeah, they were severely disabled, but they were fundamentally just kids. They played, smiled, showed affection, communicated preferences, all of that stuff. They just did it differently. I could see how a brief encounter could give you the 'horror story' impression, especially in the wrong situation, but how could someone who looked after one of these kids every day see them like that?
At around the same time, I found a website, which I can't find right now. It featured Amanda Baggs, and started with a classic 'autism awareness' style message describing her in the third person and showing how disabled she was. Then, halfway through, it switched tones, showing the exact same pictures with a positive description and explanation and challenging the stereotypes people apply to that kind of picture.
What floored me was that after all of that, at the very end, there was one of those old 'signbook' things websites used to have, and some of the commenters there still didn't get it. One guy in particular commented about a picture of Amanda lining things up and saying she found lining up objects calming, and said that "you can't say it's not sad to see her like that". Even though she wasn't sad at all in that scene, and basically nothing about that scene was sad.
This has always puzzled me. I can understanding misreading someone, but even when the person expressly said that she wasn't sad, this person saw her situation as sad. How does that work? Maybe it's because they weren't talking about the autistic person at all. They were talking about how her presence made them feel sad.
It seems to me that people like this feel like autism doesn't belong to the autistic person. How the autistic person experiences their own autism is essentially irrelevant to them. What matters is the impact that the autistic person has on everyone around them - an impact that they assume must always be negative. Of course, expectations breed reality. If you think your life has to be awful, it will be awful, because your actions will make it so.
But just recently, I thought about both of those language quirks together. Particularly, the strange fact that the same non-autistic parents who call themselves "autism parents" also tend to insist that their children are "children with autism".
People tend to use adjective-first language for descriptors that they feel are important to their identity, in my impression. If you look at non-disability descriptors, I call myself a white person, a woman, a university student, a psychologist-in-training, a creative person, an aspiring author, an asexual person, a daughter, a sister, and someday I will hopefully be a mother. All of those are descriptors that refer to aspects of my identity. In contrast, I tend to say that I have blond hair and blue eyes. Although I'm not offended if you call me a 'blond' or a 'blue-eyed person', I don't insist on that language, because my hair and eye color are not important to my identity.
So these "autism parents" clearly feel that their child's autism is important to their identity. Yet they don't think it's important to their child's identity. Why?
While reading an unpleasant blog by one "autism parent" (which I don't want to link to, because that means I'd have to look at it again), I realized something. This person acted like his son's autism belonged to him. By which I mean that his discussions of autism were focused entirely on how it feels to interact with an autistic child. Any discussion of his child's emotions tended to be couched in behavioral descriptions, such as meltdowns, rather than actual description of emotions. His reactions to descriptions of autism, too, seemed based on the assumption that those descriptions were meant to reflect how parents felt, not how autistic people felt.
Ever since my first significant encounter with a 'low functioning' autistic person, when I was 15, I've always wondered how anyone can know these kids well and really see the 'horror story' that autism awareness campaigns portray. Because, yeah, they were severely disabled, but they were fundamentally just kids. They played, smiled, showed affection, communicated preferences, all of that stuff. They just did it differently. I could see how a brief encounter could give you the 'horror story' impression, especially in the wrong situation, but how could someone who looked after one of these kids every day see them like that?
At around the same time, I found a website, which I can't find right now. It featured Amanda Baggs, and started with a classic 'autism awareness' style message describing her in the third person and showing how disabled she was. Then, halfway through, it switched tones, showing the exact same pictures with a positive description and explanation and challenging the stereotypes people apply to that kind of picture.
What floored me was that after all of that, at the very end, there was one of those old 'signbook' things websites used to have, and some of the commenters there still didn't get it. One guy in particular commented about a picture of Amanda lining things up and saying she found lining up objects calming, and said that "you can't say it's not sad to see her like that". Even though she wasn't sad at all in that scene, and basically nothing about that scene was sad.
This has always puzzled me. I can understanding misreading someone, but even when the person expressly said that she wasn't sad, this person saw her situation as sad. How does that work? Maybe it's because they weren't talking about the autistic person at all. They were talking about how her presence made them feel sad.
It seems to me that people like this feel like autism doesn't belong to the autistic person. How the autistic person experiences their own autism is essentially irrelevant to them. What matters is the impact that the autistic person has on everyone around them - an impact that they assume must always be negative. Of course, expectations breed reality. If you think your life has to be awful, it will be awful, because your actions will make it so.
posted by Ettina at 10:12 AM
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