I'm presently reading my way through a book called NeuroTribes: the Legacy of Autism and the Future of Neurodiversity, by Steve Silberman. This is after more than half a year of stiff resistance, or perhaps I should say nerves. The book is heralded as basically the singular book to read regarding autism as a disability. It's not a parents' how-to-guide, but a historical and philosophical work that presents the history of autism, early and current incidences of it, the development of various schools of thought, and then explains the concept of neurodiversity... or, more or less, the idea that humanity needs autism and other brain differences if we're to continue advancing as a species.
The book is well over 500 pages long, and as it's not a cherished fantasy story, I'm making slow progress through it. Thus far I'm less than 150 pages in, but I highly recommend it (just like everyone else).
The first thing Silberman does is pore over documents of the past, in various languages, to bring us a few tales of clearly autistic people of the past. One in particular was a nobleman of the 18th century, and his habits and mannerisms were so peculiar that they invited a great deal of discussion and comment... and so we have enough about him to put it together and clearly say, "this man was probably autistic." The book details his later life extensively, where he vigorously set himself to the advancement of his curiosity and science. But unlike most scientists, he cared nothing for credit or his name in history books, so most of his impressive discoveries were never credited to him, but rather to others.
I had to smile as I read the descriptions of the man, Lord Henry Cavendish. When I was younger, I would throw myself into things that interested me much like the descriptions of him in the book. And the letters and descriptions Silberman draws on regarding his social habits are all too familiar.
There are also stories of families whose children got their autism diagnoses young, and so were thrown into the therapy roulette. I say "roulette" because so little was known of autism at the time, it was anyone's guess what might help a kid. Things like bleach treatments, gluten-free diets, tests for heavy metals, therapists of all stripes, vaccines... all were options. To some extent, that's still true. But we do have some evidence that Applied Behavioral Analysis (ABA) can help, now, which is leaps and bounds better than having nothing.
I've just finished off the section on Hans Asperger, the man who lent his name to Asperger's Syndrome. My formal diagnosis, years ago now, was in fact Asperger's Syndrome, rather than high functioning autism or even merely autism. The difference, at this point, is merely semantics in the US. The American Psychological Association rolled many autism disorders into simply the "autism spectrum." (I've gone over a better visualization of the spectrum than the mere line I'd always visualized already.)
It's always jarring and depressing for me to read about Nazi Germany. Had I been alive back then, I would have likely been killed or put in a concentration camp for my autism. So that's the first connection that makes it more real. The second is more profound to me: my dad's father lived in Austria, as part of a lapsed Jewish family. Lapsed, meaning they didn't really take their religion all that seriously. But that didn't matter to the Nazis. A Jew was a Jew, and all of them needed to be eradicated, like every other "genetically unfit" person. My grandfather escaped Austria, but we don't know what happened to his family. Considering how little family I have, I take that rather personally.
Depressingly, the book points out that the concept of eugenics was not invented by Nazi Germany, but instead by the US. Forced sterilizations, mental institutions, and poor treatment of the mentally ill were the order of that era in the US. One Christmas, Chris' family went for their holiday walk at an old mental institution, and I swear I kept imagining being trapped in those bright red, freshly painted buildings with the insides falling apart. The sheer amount of misery I imagined in those buildings haunts me. A few decades earlier, and that might've been my fate. Temple Grandin and John Elder Robison were of the very few to escape being institutionalized for life.
The book details Hans Asperger's practices, several of which are very forward-thinking. If, for instance, a child learns poorly, his questions were not "what's wrong with the child," they were, "why does this child learn poorly, and how can we change our teaching so he can learn better?" The author also credits Asperger with the understanding of autism as a spectrum, rather than a binary thing. Apparently much of his writings and work was lost in the years during and after the war, and overridden by a different scientist, which is why it's only recently that we're starting to have these philosophies again.
That's as far as I've gotten. So far I'm very impressed with the research and coherence Silberman has put into his work. Tune in next week, dear readers, because this book has a lot more to say.
The book is well over 500 pages long, and as it's not a cherished fantasy story, I'm making slow progress through it. Thus far I'm less than 150 pages in, but I highly recommend it (just like everyone else).
The first thing Silberman does is pore over documents of the past, in various languages, to bring us a few tales of clearly autistic people of the past. One in particular was a nobleman of the 18th century, and his habits and mannerisms were so peculiar that they invited a great deal of discussion and comment... and so we have enough about him to put it together and clearly say, "this man was probably autistic." The book details his later life extensively, where he vigorously set himself to the advancement of his curiosity and science. But unlike most scientists, he cared nothing for credit or his name in history books, so most of his impressive discoveries were never credited to him, but rather to others.
I had to smile as I read the descriptions of the man, Lord Henry Cavendish. When I was younger, I would throw myself into things that interested me much like the descriptions of him in the book. And the letters and descriptions Silberman draws on regarding his social habits are all too familiar.
There are also stories of families whose children got their autism diagnoses young, and so were thrown into the therapy roulette. I say "roulette" because so little was known of autism at the time, it was anyone's guess what might help a kid. Things like bleach treatments, gluten-free diets, tests for heavy metals, therapists of all stripes, vaccines... all were options. To some extent, that's still true. But we do have some evidence that Applied Behavioral Analysis (ABA) can help, now, which is leaps and bounds better than having nothing.
I've just finished off the section on Hans Asperger, the man who lent his name to Asperger's Syndrome. My formal diagnosis, years ago now, was in fact Asperger's Syndrome, rather than high functioning autism or even merely autism. The difference, at this point, is merely semantics in the US. The American Psychological Association rolled many autism disorders into simply the "autism spectrum." (I've gone over a better visualization of the spectrum than the mere line I'd always visualized already.)
It's always jarring and depressing for me to read about Nazi Germany. Had I been alive back then, I would have likely been killed or put in a concentration camp for my autism. So that's the first connection that makes it more real. The second is more profound to me: my dad's father lived in Austria, as part of a lapsed Jewish family. Lapsed, meaning they didn't really take their religion all that seriously. But that didn't matter to the Nazis. A Jew was a Jew, and all of them needed to be eradicated, like every other "genetically unfit" person. My grandfather escaped Austria, but we don't know what happened to his family. Considering how little family I have, I take that rather personally.
Depressingly, the book points out that the concept of eugenics was not invented by Nazi Germany, but instead by the US. Forced sterilizations, mental institutions, and poor treatment of the mentally ill were the order of that era in the US. One Christmas, Chris' family went for their holiday walk at an old mental institution, and I swear I kept imagining being trapped in those bright red, freshly painted buildings with the insides falling apart. The sheer amount of misery I imagined in those buildings haunts me. A few decades earlier, and that might've been my fate. Temple Grandin and John Elder Robison were of the very few to escape being institutionalized for life.
The book details Hans Asperger's practices, several of which are very forward-thinking. If, for instance, a child learns poorly, his questions were not "what's wrong with the child," they were, "why does this child learn poorly, and how can we change our teaching so he can learn better?" The author also credits Asperger with the understanding of autism as a spectrum, rather than a binary thing. Apparently much of his writings and work was lost in the years during and after the war, and overridden by a different scientist, which is why it's only recently that we're starting to have these philosophies again.
That's as far as I've gotten. So far I'm very impressed with the research and coherence Silberman has put into his work. Tune in next week, dear readers, because this book has a lot more to say.
Thanks, Sarah!
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