as small as a world and as large as alone, chavisory: Casual reminder that Donald T., the...

12:12pm December 31, 2013

Casual reminder that Donald T., the first person ever diagnosed with autism in this country, sang in his school choir, graduated from high school, earned a college degree in French, drives, golfs, travels for fun, has a circle of friends, and lives on his own.

This is the person with, literally, the prototypical case of autism.

So if you’re making an argument that any given person is too “high-functioning” for their input to count in the national discussion about autism, or that Autism Speaks is “not really talking about people like you,” when they call autism a national catastrophe, when they call us lost, missing, kidnapped, diseased, burdens on our families and society, and lobby for our elimination…you may need to recalibrate your ideas about autistic people a little bit.

kthx.

In fact so many of Kanner’s original patients went to college that he had to write an entire paper on it, IIRC.

Also, for those confused about what Kanner’s autism actually means, please read this:

http://ballastexistenz.wordpress.com/2007/01/30/what-does-kanner-actually-mean-historically/

Often what he observed about autistic people directly contradicted what he said and concluded about autistic people’s capabilities. The one I remember the most clearly was the way he puzzled over why a nonverbal autistic girl didn’t hear instructions yet followed them perfectly, when what he really meant was that she didn’t respond in ways that most people would to show they’d heard the instructions, but she followed them quite well.

So don’t trust the conclusions he reaches about autistic people. Go for his actual concrete descriptions of our behavior, and you’ll get a much clearer view of what the people he studied were really like. For instance, many of them were clearly (by their actions) engaging with people socially, yet he wrote one of the criteria for autism is that autistic people don’t do that. And most of them had speech (only one or two of his first patients didn’t), but he considered lack of speech an important part of autism.

Kanner autism used to roughly mean ‘high-functioning’ by the way. It was only later that most 'low functioning’ people were even considered to be autistic, rather than to have some other childhood psychosis (there were tons of different childhood psychosis definitions back then, not just autism – which was considered a form of childhood psychosis by many psychiatrists… psychosis meant something different back then than now, apparently), or to have an intellectual disability. Many times, people considered low-functioning were simply diagnosed schizophrenic, where people considered high-functioning were considered to have Kanner’s. Many times, a normal to high IQ was necessary for a diagnosis of Kanner’s. There were no formal criteria so people changed the definitions over, and over, and over again and everyone used the words differently from each other.

It’s absolutely not true that autistic people were all 'low functioning’ people until recently. What actually happened was that autistic people were nearly all 'high functioning’ people in the beginning and for many years, and then 'low functioning’ people were gradually added to the definition of autism, and then became the stereotype of autistic people. And only then did 'high functioning’ people get considered not to be autistic, and have to be re-added to the definition later. And that’s only roughly the story.

(I don’t believe in HFA and LFA, these are other people’s categories, not mine.) Also, 'regressive’ autistic people were more likely to, in the seventies, be called childhood schizophrenic.

Additionally, none of these changes happened quickly and instantly. There are still people who believe that autism is a form of childhood schizophrenia and that it’s caused by bad parenting. There are still people who believe that there’s no such thing as an autistic person who can pass (or be passed) for normal, even though they’ve existed since the beginning of the definition of autism. There are still people who think Kanner means high functioning, and people who think Kanner means low functioning as well, and every possible way autism has been ever described, still has people who believe it’s true, no matter what time period it originated. People who think that once a definition is added to the DSM, everyone instantly understands, don’t understand how medicine or psychiatry work in practice.

Even most autism 'experts’ are extremely clumsy about the history of autism and how it’s been defined and diagnosed over the years. I only know these things because I’ve gone back and read the original sources from the forties, fifties, sixties, seventies, eighties, and nineties. You can do that in a university library fairly easily if you have the time and resources.