Saturday, October 24, 2015

NeuroTribes by Steve Silberman (Book Review #84 of 2015)

NeuroTribes: The Legacy of Autism and the Future of Neurodiversity

NeuroTribes is a combination of every book on autism I've ever read. Silberman has attempted a complete history of the research, diagnoses, treatments, and advocacy groups related to what we now call the "autism spectrum." It is also filled with anecdotes and personal stories, including those that led to everything in the previous sentence. This is not the first book I'd give to someone about autism. That would likely be Simon Baron-Cohen's Autism and Asperger Syndrom (The Facts) or Temple Grandin's The Autistic Brain. (The book is essentially a much wider version of Grandin's book, exploring more in-depth some of the themes she only touches on). But this book is definitely a book I would give to someone who wants to know everything they possibly can.

The theme of the book, never laid out explicitly, is that there is a group of people throughout history who have stood out as geniuses, providing us with many of the scientific breakthroughs, computer software, and other inventions that have provided us with much of the technology we now enjoy. When you look at the recorded history of these individuals, they tend to match what we would later call Asperger's or today the "autism spectrum." Temple Grandin's work similarly speculates that several people in history, like Einstein, were likely undiagnosed autistics. Silberman is tracing the history of where these people came from and why there seem to be more now than before. Grandin and Silberman's points are that autism doesn't just have a chemical, dietary, environmental, genetic, or social explanation. Trying to "cure" or "prevent" autism is similar to the government trying to eliminate the world of mutants in Marvel's X-Men series. The key instead is to work to integrate those people, allow them to live to their fullest potential, and enjoy the benefits they bring to our world.

The groundbreaking aspect of the book was Silberman's discovery of the connection between Hans Asperger's chief diagnostician in Germany later working in the U.S. under Leo Kanner, who pioneered both childhood psychiatry and the autism diagnosis in the U.S. Kanner must certainly have known more about Asperger's work than he ever let on, although he later erroneously claimed they were studying two different phenomenons. Asperger is essentially a hero who saved hundreds of kids from certain death under the Nazis, his research lost under Allied bombs. Kanner, a secular humanist, comes across as a cold and sometimes cruel, responsible for propogating such myths as "refrigerator parents" as the cause of autism and at one point favoring Nazi-style forced sterilization. Kanner used to favor institutionalization but later came around to Asperger's belief that progress was possibly only if a child wasn't institutionalized.

The most difficult passages in the book recount how a central Nazi death panel signed off sight-unseen on deaths of disabled or mentally challenged kids. This sidebar is a bit unnecessary to the book, but it underlies a point that Silberman is making about attempts to eradicate-- or prevent-- those who are different. How far is too far? Trying to weed autism out of the gene pool to prevent unnecessary hardship on parents and caretakers leads to the slippery slope of eugenics. Just as the Nazis purged their country of immense physical and intellectual capital by expelling and murdering Jews, our society runs the risk of purging ourselves of the capital that autistic people bring.

One major weakness of Silberman's book is his inability to mark out a distinction of the various sensory processing disorders that correlate strongly with autism, something Grandin spends time on in The Autistic Brain. Much research has been done on autism, but less on these SPDs and their apparent connections. An autistic person's "stimming" may not be autism, per se, but related to their type of SPD. Genetics seem to play the strongest role judging by studies done on autistics who reproduce, studies of twins with and without autism, etc. and genetics would explain historical instances of autism before there were vaccines or GMOs and other things that have been blamed over recent years.

The negative reviews of this book seem to primarily come from parents who are upset that Silberman seems to continually cast doubt on the "autism epidemic," as it's called. He does what any good journalist does, look at the history and check the facts. He is not overtly critical of the DSM system of diagnosis but provides the history of how the DSM came about. The DSM as a book was a way for the APA to make money, it is a bestseller, insurance companies now rely on it, etc. There were actually few studies or diagnoses behind anything written in the original DSM, it has gotten better through the years but the consensus process in which it is put together is far from scientific. Temple Grandin has the same criticisms, and admonishes people not to be stuck by a diagnosis. But when you broaden the criteria for being diagnosed autistic, as they have over the years, you're going to have more children diagnosed with it. Many of these children used to be diagnosed as "schizophrenic." That doesn't explain all of the increase in diagnosis, but it does explain a good chunk of it. It's just math. Running with the X-Men theme from above, he writes that modern art like comic books tends to celebrate uniqueness and diversity more than, say, 50 years ago. This has encouraged more people to be comfortable being different and for those on the autism spectrum to come out of the shadows.

Along with the origins of the autism diagnosis and Kanner's blaming bad parenting, Silberman explores the rise of the vaccine controversy, the stories that led to Andrew Wakefield writing his later-retracted paper paper, which led to thimerosal being removed from vaccines, to the outright factual errors in the paper and its later retraction. There are clear falsehoods that need to be examined, and plenty of problems with a vaccine explanation that don't explain what was seen in 1930s Germany.

The author also traces the history of various treatments for autism, such as applied behavioral analysis (ABA) and the gluten-free, casein-free diets. My son has gotten ABA therapy from ABA specialists and I was horrified by the dark history of ABA as pioneered by Ole Lovaas. Lovaas moved from focusing on positive reinforcement to experimenting with physical pain and punishment. Who knew that someplace in Massachusetts still uses electroshock therapy on autistic kids, and it's apparently legal? Lovaas' methods led to the controversial "Feminine Boy" project at UCLA (of all places), trying to normalize effeminate boys. The project, headed by future Famiy Research Council founder George Rekers, was a "cash cow" for the university, getting donations even from the Playboy Foundation. Rekers was himself later caught in a homosexual relationship, and the client which made his career hanged himself. Psychiatry really comes across as an unscientific field where experiments on children have long-lasting consequences seen only in hindsight. There is no "first, do no harm" rule as I can see it.

Nutrition science is another of those fields where non-scientist practitioners make money by peddling unscientific claims. The author looks briefly at various treatments put forth over the years from vitamin B diets to the GFCF movement.

Silberman also chronicles the rise of autism advocacy in the 1970s, a movement that grew from concerned parents looking for answers and networking for therapy help into the modern movement where autistic people advocate for themselves. The 1975 Disabilities Act for education paved the way for an era of inclusiveness in schools, putting the onus on the school to design education for every student. Interestingly, perhaps cautiously, Silberman includes a lot of female autistic examples, even though females make up a minority of diagnoses. He does explore this issue a little, but without going into Baron-Cohen's hypothesis that autism is an extreme example of the difference between male and female brain characteristics.

Interestingly, Silberman describes the making of Rain Man, the first time society saw autistic traits on a large scale. Critics have charged that Rain Man either trivialized the problem or made people say "We all have a little 'Rain Man' in us, don't we?" I found the description of Dustin Hoffman's time in institutions trying to get in character as pretty fascinating, it was an emotionally difficult movie to make, but I agree with Silberman that it was a hugely important undertaking and worthy of the awards it garnered. But it does raise another problem with the book-- almost all of the examples that Silberman cites are prodigies and savants. This has led to a lot of criticism from parents who may be dealing with non-verbal children who need 24 hour caretaking, have violent episodes, etc.

Silberman notes that with time, therapy, self-awareness, exploring their strengths, mating, etc. people move from and to different points on the "continuum" that is autism. This is similar to what is claimed by the autistic man John Elder Robison in his book Look Me in the Eye, and makes sense intuitively. But it is not something "cured" or to be viewed as harmful.

This book is the most complete scientific and social history I have seen to date. To understand autism you really have to be knowledgeable about at least 10 different fields of science and psychology. This book does its best to synthesize everything. My last criticism of the book is that it included too many anecdotal details. The first 10% of the book gives detailed picture of a few autistic people in silicon valley and a broad overview of topics to be covered later in the book, unnecessarily. With the weaknesses that could have been edited out, I give it 4 stars. But the underlying theme defending the tribe of autistic people from people who think they know best is vitally important. Highly recommend, but read Temple Grandin's The Autistic Brain first. 4 stars out of 5.

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