speaking about autism
At the risk of putting my foot all the way into it, I feel compelled to get something off my chest about the Tumblr-level discourse on autism. (Not on Tumblr, of course, because I'm smarter than that.)
I have been made suitably aware that this is Autism Awareness Month, and have had it suitably outlined what a shitstorm Autism Speaks is as an organization (though I knew that before). However, I think in all this awareness, there are two things that are getting lost: an understanding of autism really as a wide spectrum, and an understanding of how difficult it really can be to parent an autistic child.
I've known a lot of autistic individuals, and in many cases, I've known their parents. There are plenty of high-functioning people on the spectrum out there, some of whom I've been lucky enough to call good friends; some could (and do) pass for neurotypical, while others clearly have quirks they've learned to work with and around. While I've only met a few truly nonverbal individuals (all of whom were very young, and most, if not all, of whom will grow into speech), I know there are nonverbal adults on the spectrum with excellent listening comprehension and written communication skills.
But autism is also a twelve-year-old boy with the language comprehension of a two-year-old, who put literally everything in reach into his mouth. It's an eight-year-old boy who wanted so badly to behave, but couldn't help his urges to throw cups of water at people, tear pages out of books, snatch glasses off people's faces, stuff objects up his nose, and pee on the carpet. It's a seven-year-old girl who would scream for hours for no discernable reason and randomly attack even her favorite teachers with sharp objects. It's a sixteen-year-old girl who couldn't stop tearing out her hair and couldn't tell the plot of Star Wars in any kind of order, even though she'd seen it hundreds of times. It's a fifteen-year-old boy who, when asked to draw a picture of his body, drew a picture of the Kennedy assassination because he didn't understand the prompt. It's an enormous young man who watched Sesame Street obsessively and once got so frustrated he began slamming his hands against the table we were sitting at; if he hadn't decided to calm down, he could have hurt me very badly without ever intending to.
I agree that Autism Speaks doesn't give a good full representation of the autistic community, but I honestly don't think Tumblr's encouraging a much more balanced portrayal. The cry of 'let autistics speak for ourselves' is a good idea, but that really limits the playing field to those who can speak, or write, or even understand what's going on with them enough to realize they need some advocacy.
And I don't think it's fair to discount the frustration of the parents. Honestly, I'm pretty damn sympathetic to the parents who say they've considered murdering their severely austistic children, because I have seen the care of those children suck the parents dry. (PSA: Don't smother your kids.) The ones with a lot of money, strong social networks, excellent health insurance, accommodating school districts, and access to good doctors can usually power through having a special-needs child who may need round-the-clock supervision their entire lives and never be able to be taken out in public, much less function independently in the long term. Remove even one of those supports, and things start getting rough; remove them all, and ... yeah. And having more independently living autistic individuals shout at those parents -- and let's be honest, by 'parents' we mostly mean 'mothers' -- for voicing their frustrations can't possibly be helpful. (Again: Do not actualy murder your children.)
This, of course, gets to the core of a problem with any 'spectrum' identity, be it race or sexuality or neurological status or anything else: Who gets to be 'the' identity? I remember the days of 'autism chic' online, when you couldn't tell the doc-diagnosed from the self-diagnosed without a scorecard -- but the people who wanted to claim their special-snowflake places on the spectrum weren't thinking about pitching howling fits, or being baffled by two-step directions, or picking at skin and scabs in public, or failing to grasp that words have any meaning at all. I saw a post about how Autism Speaks' monthly budget would buy so many iPads for nonverbal autistic individuals; it didn't calculate the equivalent value in behavioral therapists, ABA training, lawyer fees for suing school boards to provide services, classroom aides, hospital costs, medication for mood disorders....
So I don't know! It's complicated. But I don't think it gets made un-complicated by shearing off the parts of the spectrum that don't have internet presences.
I have been made suitably aware that this is Autism Awareness Month, and have had it suitably outlined what a shitstorm Autism Speaks is as an organization (though I knew that before). However, I think in all this awareness, there are two things that are getting lost: an understanding of autism really as a wide spectrum, and an understanding of how difficult it really can be to parent an autistic child.
I've known a lot of autistic individuals, and in many cases, I've known their parents. There are plenty of high-functioning people on the spectrum out there, some of whom I've been lucky enough to call good friends; some could (and do) pass for neurotypical, while others clearly have quirks they've learned to work with and around. While I've only met a few truly nonverbal individuals (all of whom were very young, and most, if not all, of whom will grow into speech), I know there are nonverbal adults on the spectrum with excellent listening comprehension and written communication skills.
But autism is also a twelve-year-old boy with the language comprehension of a two-year-old, who put literally everything in reach into his mouth. It's an eight-year-old boy who wanted so badly to behave, but couldn't help his urges to throw cups of water at people, tear pages out of books, snatch glasses off people's faces, stuff objects up his nose, and pee on the carpet. It's a seven-year-old girl who would scream for hours for no discernable reason and randomly attack even her favorite teachers with sharp objects. It's a sixteen-year-old girl who couldn't stop tearing out her hair and couldn't tell the plot of Star Wars in any kind of order, even though she'd seen it hundreds of times. It's a fifteen-year-old boy who, when asked to draw a picture of his body, drew a picture of the Kennedy assassination because he didn't understand the prompt. It's an enormous young man who watched Sesame Street obsessively and once got so frustrated he began slamming his hands against the table we were sitting at; if he hadn't decided to calm down, he could have hurt me very badly without ever intending to.
I agree that Autism Speaks doesn't give a good full representation of the autistic community, but I honestly don't think Tumblr's encouraging a much more balanced portrayal. The cry of 'let autistics speak for ourselves' is a good idea, but that really limits the playing field to those who can speak, or write, or even understand what's going on with them enough to realize they need some advocacy.
And I don't think it's fair to discount the frustration of the parents. Honestly, I'm pretty damn sympathetic to the parents who say they've considered murdering their severely austistic children, because I have seen the care of those children suck the parents dry. (PSA: Don't smother your kids.) The ones with a lot of money, strong social networks, excellent health insurance, accommodating school districts, and access to good doctors can usually power through having a special-needs child who may need round-the-clock supervision their entire lives and never be able to be taken out in public, much less function independently in the long term. Remove even one of those supports, and things start getting rough; remove them all, and ... yeah. And having more independently living autistic individuals shout at those parents -- and let's be honest, by 'parents' we mostly mean 'mothers' -- for voicing their frustrations can't possibly be helpful. (Again: Do not actualy murder your children.)
This, of course, gets to the core of a problem with any 'spectrum' identity, be it race or sexuality or neurological status or anything else: Who gets to be 'the' identity? I remember the days of 'autism chic' online, when you couldn't tell the doc-diagnosed from the self-diagnosed without a scorecard -- but the people who wanted to claim their special-snowflake places on the spectrum weren't thinking about pitching howling fits, or being baffled by two-step directions, or picking at skin and scabs in public, or failing to grasp that words have any meaning at all. I saw a post about how Autism Speaks' monthly budget would buy so many iPads for nonverbal autistic individuals; it didn't calculate the equivalent value in behavioral therapists, ABA training, lawyer fees for suing school boards to provide services, classroom aides, hospital costs, medication for mood disorders....
So I don't know! It's complicated. But I don't think it gets made un-complicated by shearing off the parts of the spectrum that don't have internet presences.