This is the finale of my multipart series on the book NeuroTribes, by Steve Silberman. (part 1, part 2, part 3)
We're now to the part of the book that deals with very recent history- my lifetime and just a bit earlier. Andrew Wakefield and the vaccine controversy, Temple Grandin and her emergence as the first truly visible autistic adult, the development of the DSM (diagnostic) criteria for autism, Autism Speaks and ASAN, and beyond.
For some reason I find it astonishing to learn the disastrous (in my opinion) Wakefield (vaccines cause autism) study was published in 1998. Silberman treats Wakefield a lot more politely than I would, given a similar chance to document the history of autism. He does, of course, point out that the study was couched in deception, flatly disproven repeatedly, retracted from the journal in which it was published, and led to Wakefield himself being stripped of his medical license. But surprisingly to me, given the depth of color given to other figures in autism history, Wakefield's personality isn't explored much. I presume the man is still alive, and perhaps much-harried by controversy, so perhaps Silberman's treatment of him here is a kindness. The vaccine controversy is a sore subject for a lot of people involved with the autism spectrum, regardless of where their beliefs lie.
I personally note here that the book describes what I'm told are termed "vaccine injuries." For reference, that is absolutely a real thing that can happen with vaccines. It's rare, but there have been sufficient cases that a federal tracking system was warranted. So yes, vaccines absolutely can have bad effects, there can be bad lots of vaccine just like there are bad lots of vegetables or meat in the grocery store. However, those incidents do not pertain to autism, because autism is an inborn disability. I'm going to stop on the subject here, because I can't be polite about the vaccine controversy for very long and I think I've reached the end of my tether.
On a much happier note, Temple Grandin! I'm pretty much always happy when people mention Temple Grandin, and indeed, no history of autism would be complete without her. It seems every person has a slightly different take on her, from my doctor to a worker at my college, to Silberman here. But the base facts all agree: she was one of the very first to self-identify and step forward. She is very successful in her work as an industrial designer as well as her work as an autism advocate. She has her PHD, and stands on her own two feet. She has difficulties, but makes use of her differences to do things that other people can't.
It was with pleasure that I read the stories of Jim Sinclair and others I'd never heard of. While I was still wondering why I was so different from everyone else, it seems the older people on the spectrum were linking together, developing the first communities around the diagnosis. And just like me, getting tired of parents mourning the loss of their dreams of a "normal" child. I missed all of that community, only receiving my diagnosis in my early 20s. Surprisingly absent from mention (but not citation) is John Elder Robison. But given the diverse cast of characters to this chapter of autism history, I suppose the author could really only mention so many.
The last pages of the book describe the neurodiversity movement, what it can offer, and how it's affected the lives of those on the spectrum. The only fact that really surprised me here was the mention that at least one study of the genetics behind autism notes that the genes involved with autism are many, varied, and ancient. Apparently autism is a very, very old part of humanity. He cites the study from which this conclusion was drawn at the end, I'll have to check it out.
In conclusion, this is, as I first mentioned, a book well-worth reading. I will warn you, it's dense. The characters are many and varied. And perhaps most jarring to me, the book jumps forward and backward in time. This is less a failure of the writing and more the fact that history is seldom polite, discrete segments of philosophy. Movements began, rose, and and warred with each other all at once. People who lived at the same times but had vastly different perspectives interacted- or didn't- and had to be covered in different sections.
I was somewhat afraid, having gotten 3/4s of the way through this book, that the author was going to expound upon the neurotypical population being useless without "autistic intelligence" in this new world crafted in part by autistic hands, and being specific about autistic intelligence being only the "special interests" or the sometimes narrow focus people on the spectrum can exhibit. But he doesn't do that, choosing instead to end the book on a quiet "the future is now" note. This is fortunate, because while I want to make a difference in the world, I don't seem to have a narrow focus or "special interest" like many folks on the spectrum do. It would sting a little to be left out of the new world Silberman envisions here.
All in all, I would call this book "an exploration of autism history" and hope fondly that you will read it. I initially borrowed a copy from the library, but having finished it and seen its excellence for myself, I believe I'll buy it.
My last thought on the subject is this: if I ever do anything to merit a biographer, I can only hope someone of Silberman's quality will treat me with as much kindness as he treats the many people in NeuroTribes.
We're now to the part of the book that deals with very recent history- my lifetime and just a bit earlier. Andrew Wakefield and the vaccine controversy, Temple Grandin and her emergence as the first truly visible autistic adult, the development of the DSM (diagnostic) criteria for autism, Autism Speaks and ASAN, and beyond.
For some reason I find it astonishing to learn the disastrous (in my opinion) Wakefield (vaccines cause autism) study was published in 1998. Silberman treats Wakefield a lot more politely than I would, given a similar chance to document the history of autism. He does, of course, point out that the study was couched in deception, flatly disproven repeatedly, retracted from the journal in which it was published, and led to Wakefield himself being stripped of his medical license. But surprisingly to me, given the depth of color given to other figures in autism history, Wakefield's personality isn't explored much. I presume the man is still alive, and perhaps much-harried by controversy, so perhaps Silberman's treatment of him here is a kindness. The vaccine controversy is a sore subject for a lot of people involved with the autism spectrum, regardless of where their beliefs lie.
I personally note here that the book describes what I'm told are termed "vaccine injuries." For reference, that is absolutely a real thing that can happen with vaccines. It's rare, but there have been sufficient cases that a federal tracking system was warranted. So yes, vaccines absolutely can have bad effects, there can be bad lots of vaccine just like there are bad lots of vegetables or meat in the grocery store. However, those incidents do not pertain to autism, because autism is an inborn disability. I'm going to stop on the subject here, because I can't be polite about the vaccine controversy for very long and I think I've reached the end of my tether.
On a much happier note, Temple Grandin! I'm pretty much always happy when people mention Temple Grandin, and indeed, no history of autism would be complete without her. It seems every person has a slightly different take on her, from my doctor to a worker at my college, to Silberman here. But the base facts all agree: she was one of the very first to self-identify and step forward. She is very successful in her work as an industrial designer as well as her work as an autism advocate. She has her PHD, and stands on her own two feet. She has difficulties, but makes use of her differences to do things that other people can't.
It was with pleasure that I read the stories of Jim Sinclair and others I'd never heard of. While I was still wondering why I was so different from everyone else, it seems the older people on the spectrum were linking together, developing the first communities around the diagnosis. And just like me, getting tired of parents mourning the loss of their dreams of a "normal" child. I missed all of that community, only receiving my diagnosis in my early 20s. Surprisingly absent from mention (but not citation) is John Elder Robison. But given the diverse cast of characters to this chapter of autism history, I suppose the author could really only mention so many.
The last pages of the book describe the neurodiversity movement, what it can offer, and how it's affected the lives of those on the spectrum. The only fact that really surprised me here was the mention that at least one study of the genetics behind autism notes that the genes involved with autism are many, varied, and ancient. Apparently autism is a very, very old part of humanity. He cites the study from which this conclusion was drawn at the end, I'll have to check it out.
In conclusion, this is, as I first mentioned, a book well-worth reading. I will warn you, it's dense. The characters are many and varied. And perhaps most jarring to me, the book jumps forward and backward in time. This is less a failure of the writing and more the fact that history is seldom polite, discrete segments of philosophy. Movements began, rose, and and warred with each other all at once. People who lived at the same times but had vastly different perspectives interacted- or didn't- and had to be covered in different sections.
I was somewhat afraid, having gotten 3/4s of the way through this book, that the author was going to expound upon the neurotypical population being useless without "autistic intelligence" in this new world crafted in part by autistic hands, and being specific about autistic intelligence being only the "special interests" or the sometimes narrow focus people on the spectrum can exhibit. But he doesn't do that, choosing instead to end the book on a quiet "the future is now" note. This is fortunate, because while I want to make a difference in the world, I don't seem to have a narrow focus or "special interest" like many folks on the spectrum do. It would sting a little to be left out of the new world Silberman envisions here.
All in all, I would call this book "an exploration of autism history" and hope fondly that you will read it. I initially borrowed a copy from the library, but having finished it and seen its excellence for myself, I believe I'll buy it.
My last thought on the subject is this: if I ever do anything to merit a biographer, I can only hope someone of Silberman's quality will treat me with as much kindness as he treats the many people in NeuroTribes.
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