Adam Feinsteins book, “A History of Autism: Conversations with the Pioneers”, is reminiscent of the better known book of two years prior, “Unstrange Minds” by Roy Richard Grinker. (Feinstein’s book was published in 2010, Grinker’s in 2008.) Both books consider the progress of autism from its “discovery,” to the modern-day perspectives; both consider the changes in the diagnostic categories; and look at differences in the response to autism from different cultures and societies. But the information, focus and perspective is different enough that both these books have a lot to teach people about the nature of autism, particularly about how understanding the emergence of “autism” as a label sheds light on modern attitudes and approaches to the condition.
Feinstein’s book is valuable for its historical explanation of the changing diagnostic criteria for autism, which is particularly relevant and current with the DSM-5 criteria changes looming. He even shares information about some of those DSM-5 key changes, and has some interesting dialogues with some of the key figures involved in the formation of past and present diagnostic manuals. The book talks as much about Aspergers as it does about “classic autism”, and provides some interesting insights on the differences, similarities and possible future relationship of the two conditions.
Feinstein also discusses the emergence of charities and organisations set up across the world to help those with autism and their families, and relates how the emergence and focus of those groups reflects different government and cultural attitudes towards autism. Through-out the book he shares the changing scientific theories and interviews with the personalities behind the science (which is already a little dated now in 2012). He has made the effort to track down key players in the field of autism from through-out history, so that the book is very much a who’s-who (including photos giving faces to the names).
But the part that I found most intriguing, and that was largely new and eye-opening for me, was how much and in what ways Nazi Germany impacted on the history of autism. In particular, it affected those involved with the origins of autism, views of their research, and the early treatments of autism. For example, the popularity of the psychoanalytical approach towards autism – which still remains strong in some pockets of the modern world – can in part be understood as a reaction against the eugenics of Nazi Germany: It was seen as far more savory to blame the coldness and incompetence of parents (especially mothers) for their child’s condition (therefore making autism avoidable and treatable), than to concede to the notion of the predetermined, unchangeable, irredeemable subnormality that the Nazi culture wanted to eradicate from humanity.
Here, Bettelheim makes his appearance; a man who is both threatening, and ironically perverse. I was appalled by the rather unscientific (and frequently absurd) psychoanalytic approach to autism, and the associated cruel practices, such as “parentectomies” and “packing”, supported by people like Bettelheim; yet Feinstein helped me to sympathetically understand how such a man and personality was formed. Bettelheim was himself a victim of Nazi Germany, and was sympathetically received as a man who intimately understood the suffering of the withdrawn and scared autistics, and was passionate about protecting them from their mothers. Of course, the result of this passion would be further preventable suffering; for mothers and their autistic children.
I find it somewhat amazing that after years of reading about and discussing autism, it wasn’t until I picked up this book that I came to understand the links between Nazi Germany and the history of autism: It is not just an interesting piece of history that ran alongside the emergence of autism; it is part of the story of autism.
I found the writing of the book itself somewhat jilted or unpolished, and awkwardly put together in places; like Feinstein didn’t know quite how to stay on top of all the people he interviewed and researched, and struggled to balance the conflicting accounts of personalities alongside a historical account of autism. But the insights and rather remarkable amount of research that has gone into the book, makes it a valuable resource, that I found both enlightening and educational.