Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.
Today's article makes me shake my head and wonder if parts of academia ever talk the the people they supposedly study.
The gist of this article is a mix of fact and twisted perspective. Autism, having moved beyond Kanner's original, highly limiting understanding, is a much less homogeneous diagnosis than it used to be. If someone walks up to you and tells you they're autistic, you might have expectations or understandings of what that means, but in truth, we're a dizzying rainbow of interests, skill levels, sociability levels, and communication abilities. If you've met one person with autism, you've met one person with autism.
This is not entirely a good thing, of course, when it comes to research. You want a whole understanding of the condition so you can study all of it and thus receive data on all of it. But with a category as broad as autism, where you can have someone highly verbal with lots of self-care skills, like me, and someone completely nonspeaking who may never learn to use a toilet, it can be hard to pin down what you're looking at and how to study it. I've written on this before, and I expect I will again, since that post is nearly three years old.
Apparently this researcher or team of researchers misses the old days of Kanner's narrow diagnostic criteria, which would have excluded myself and many of the autistic adults I know... even the nonspeaking ones, for being too social and having too many friends. As if the gradual improvement of not systemically isolating nonspeaking people and socially maladapted people like myself was a bad thing.
I'm not sure what they think the point of a diagnosis is, to be honest. As far as I know, it's for designating there's a certain difference or disability that's "off-spec." I've developed my camouflaging skills to the point where you usually can't, on brief inspection, tell I'm autistic... but that does not magically make me not autistic. It does not make my brain work like everyone else's. It does not make me respond to noises, social situations, and popular media like everyone else.
I am, irrevokeably, different. The word we have for that particular type of difference is autism. Pining for the old days of Kanner's syndrome isn't going to change that fact. Neither is pretending the differences don't exist simply because some autistic people have developed socialization skills, or are highly verbal, or aren't completely overwhelmed and withdrawn from society.
Postulating that autism doesn't exist merely because you aren't staring myopically at the most extreme end of the spectrum is absurd, and I challenge anyone who is entertaining that idea to come talk to me, or to any other autistic person willing to communicate on the subject. My contact information is on this blog.
Lastly, the article has the temerity to complain that no major discoveries have happened in the field of autism in the last decade. The implication being, of course, that this is because the research is focused on too broad a category of people. I expect a lot of research teams would disagree with this assessment of recent research, but quite frankly, I don't particularly disagree.
That's because most researchers are looking in the wrong places, in my opinion. They're using mouse models (which are the semi-ethical stand-in for human subjects) rather than looking at human data. They're fiddling in genetics when it's been abundantly clear that autism isn't fully explained by genes. The answer, I think, is found in the brain, and its connections.
I have personal experience to back that opinion. I started LENS (Low Energy Neurofeedback System) about four years ago, after getting out of college and failing out of various jobs. Under my doctor's care, and with the LENS prodding at my brain connections, I've made such improvements as "learning to smile at cameras and people predictably," "becoming less depressed on a day-to-day basis," and "managing a long distance relationship, which turned into a regular relationship, and then a marriage."
I can also point to John Elder Robison's experience with TMS (another form of brain stimulation), which he wrote a book about and I reviewed. I am certainly not a researcher, but I think anecdotal evidence serves a purpose. If nothing else, it points to what avenues might be worth exploring. I just hope these parts academia can catch up, rather than dragging their collective heels and wishing for the unenlightened past, where people like me were institutionalized with other diagnoses rather than given supports and helped to build lives for ourselves.
(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)
Today's article makes me shake my head and wonder if parts of academia ever talk the the people they supposedly study.
The gist of this article is a mix of fact and twisted perspective. Autism, having moved beyond Kanner's original, highly limiting understanding, is a much less homogeneous diagnosis than it used to be. If someone walks up to you and tells you they're autistic, you might have expectations or understandings of what that means, but in truth, we're a dizzying rainbow of interests, skill levels, sociability levels, and communication abilities. If you've met one person with autism, you've met one person with autism.
This is not entirely a good thing, of course, when it comes to research. You want a whole understanding of the condition so you can study all of it and thus receive data on all of it. But with a category as broad as autism, where you can have someone highly verbal with lots of self-care skills, like me, and someone completely nonspeaking who may never learn to use a toilet, it can be hard to pin down what you're looking at and how to study it. I've written on this before, and I expect I will again, since that post is nearly three years old.
Apparently this researcher or team of researchers misses the old days of Kanner's narrow diagnostic criteria, which would have excluded myself and many of the autistic adults I know... even the nonspeaking ones, for being too social and having too many friends. As if the gradual improvement of not systemically isolating nonspeaking people and socially maladapted people like myself was a bad thing.
I'm not sure what they think the point of a diagnosis is, to be honest. As far as I know, it's for designating there's a certain difference or disability that's "off-spec." I've developed my camouflaging skills to the point where you usually can't, on brief inspection, tell I'm autistic... but that does not magically make me not autistic. It does not make my brain work like everyone else's. It does not make me respond to noises, social situations, and popular media like everyone else.
I am, irrevokeably, different. The word we have for that particular type of difference is autism. Pining for the old days of Kanner's syndrome isn't going to change that fact. Neither is pretending the differences don't exist simply because some autistic people have developed socialization skills, or are highly verbal, or aren't completely overwhelmed and withdrawn from society.
Postulating that autism doesn't exist merely because you aren't staring myopically at the most extreme end of the spectrum is absurd, and I challenge anyone who is entertaining that idea to come talk to me, or to any other autistic person willing to communicate on the subject. My contact information is on this blog.
Lastly, the article has the temerity to complain that no major discoveries have happened in the field of autism in the last decade. The implication being, of course, that this is because the research is focused on too broad a category of people. I expect a lot of research teams would disagree with this assessment of recent research, but quite frankly, I don't particularly disagree.
That's because most researchers are looking in the wrong places, in my opinion. They're using mouse models (which are the semi-ethical stand-in for human subjects) rather than looking at human data. They're fiddling in genetics when it's been abundantly clear that autism isn't fully explained by genes. The answer, I think, is found in the brain, and its connections.
I have personal experience to back that opinion. I started LENS (Low Energy Neurofeedback System) about four years ago, after getting out of college and failing out of various jobs. Under my doctor's care, and with the LENS prodding at my brain connections, I've made such improvements as "learning to smile at cameras and people predictably," "becoming less depressed on a day-to-day basis," and "managing a long distance relationship, which turned into a regular relationship, and then a marriage."
I can also point to John Elder Robison's experience with TMS (another form of brain stimulation), which he wrote a book about and I reviewed. I am certainly not a researcher, but I think anecdotal evidence serves a purpose. If nothing else, it points to what avenues might be worth exploring. I just hope these parts academia can catch up, rather than dragging their collective heels and wishing for the unenlightened past, where people like me were institutionalized with other diagnoses rather than given supports and helped to build lives for ourselves.
(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)
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