The Book That Could Change Everything

a book review of:

Neurotribes: the Legacy of Autism and the Future of Neurodiversity

By Steve Silberman

2015, Penguin Random House

 

                Since I got my autism diagnosis at the age of 25, I have read a lot of books about autism.  I have read the accounts of parents, of adults, of children.  I have read books by people who don’t speak, by people who do, by scientists, teachers, professionals.  Not a single one of these books, however, has had as profound an impact on me as Steve Silberman’s 2015 masterpiece, Neurotribes: the Legacy of Autism and the Future of Neurodiversity.  Silberman’s book, to put it simply, changed my life and changed my worldview, for Silberman has shown me for the first time in my life that I am human after all.  His book is more than an affirmation, it is a declaration.  It is a poem and a paen to the fact that all brains are good brains, and just because you do not experience things the way that neuro-typicals do, it does not mean that you are not valuable.  It does not mean that you do not have things to contribute to the world.

                The book appears at first to be a history of autism, interwoven with the stories of autistic people today.  Silberman dives deep into history to uncover eccentrics in the 1700 and 1800’s who would almost undoubtedly be diagnosed as autistic today, and then he spends a considerable amount of time in the 20th century, explaining who, exactly, Hans Asperger was, and the impact Asperger had.  To my astonishment, I found out that Leo Kanner, who always gets credit for discovering autism on his own, albeit a bit later than Asperger, in fact did no such thing.  He had the help of a number of excellent doctors, all of whom had been trained at and worked at Asperger’s clinic in Vienna, Austria, before being forced to flee to the US because of Nazism. He also, as a native German speaker, had access to Asperger’s papers on autism, which had not been translated into English yet.

                As if we need one more reason to hate the Nazis: it is because of them that World War II came, destroyed the lives of countless millions, and reduced to rubble the clinic Asperger founded and where much of his research was located.  The book also firmly puts to rest the rumors that Asperger was a Nazi.  He was not.  True, he served in the German army, but only as an ambulance driver and a surgeon.  He actually protected the children in his care as well as he possibly could in a time when the Nazi government was out to murder all disabled people. 

                I must say that I did not know that World War II had the capability to bring me to tears anymore.  I’ve learned so much about it over the years, after all, I’ve toured the museums, seen the pictures.  But I never knew before how directly a single World War II bomb impacted my own life.  Had the clinic not been bombed, had Asperger’s studies flourished after the war, who knows how much earlier I and many of my friends would have been diagnosed?  Asperger had a realistic, yet persistently positive, view of autism, and had his visions prevailed, how much abuse and hurt would have been prevented?

                But we will never know that.  What we do know is that Kanner claimed all the credit for discovering autism, and Ivar Lovaas earned the undying hatred of many autistics when he founded the field of behavior modification and applied behavior analysis.  Lovaas did not shy away from using painful punishment on autistic people when they did not comply with his programs, despite the fact that BF Skinner, who invented the idea of operant conditioning, did not find that punishments ever did any good.  Lovaas and his successors did not seem to see autistic people as children; instead, they were alien, strange, and odd.  This worldview would prevail for decades.

                Silberman documents the years following World War II with the air of someone witnessing history, chronicling the rise of the parent movement and how they changed things before moving onto when autistic adults began entering the picture and advocating for themselves for the first time – which was earlier than you thought!  He obviously not only respects, but genuinely likes, spending time with many autistic people and interviewing them extensively. In particular, a boy called Leo Rosa and his family are featured throughout the book as his mother explains how they first met his autism diagnosis with fear, then determination to cure it, then lots of fad treatments and alternative therapies, before finally starting to listen to autistic adults and respect Leo for being Leo.  Unlike in the vast majority of books about autism, the Rosas are an undeniably happy family, and they are not happy in spite of autism, but because of autism.  They acknowledge that Leo’s needs-intensive autism can be very challenging at times, but without it, Leo would not be Leo: a joyful, inquisitive boy who goes through the world in his own way.

                For despite all of the talk of Nazis and the horrible way autistic people have been treated, this is a happy book.  It is a hopeful book.  For me, as an autistic adult, it introduced me to a number of adult autistics, in the present and in the past, who managed to make their lives happy and fulfilling ones.  It reminded me of the wonderfulness that is the autistic community, what we have done and continue to do to make the world a better place for all people.  Silberman pleads that instead of ‘viewing this gift as an error of nature….society should regard it as a valuable part of humanity’s genetic legacy while ameliorating the aspects of autism that can be profoundly disabling without adequate forms of support.’ (p. 470)  This is a tall order, but it is not an unsurmountable nor unachievable one. 

                In case you haven’t gathered from the above – I loved this book.  I loved this book a lot.  I cherish this book.  Despite the fact that it runs nearly five hundred pages, it is an easy and addicting read.  It is the kind of book that you will find yourself bringing into the bathroom with you, then looking up twenty minutes later to realize oh yeah, maybe you should get up now.  You will find yourself carrying a bigger bag around so you can snatch a few pages in lines.  You will lose sleep as you weep and laugh and celebrate the joys and tragedies of autism.

                Without a doubt, my favorite line in the book is near the end, on page 470.  It is: ‘Whatever autism is, it is not a unique product of modern civilization.  It is a strange gift from our deep past, passed down through millions of years of evolution.’  In other words: I am not alone.  You are not alone.  We have always been here, we have just been calling it by different names.  We have come a very long way and we have a long way to go, but the only, the really, truly only way to go forward is to stop fighting, stop viewing it as a tragedy, accept autistics themselves as the experts on autism and start living, authentically, autistically, all of us.  All whole. 

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