Review of Adam Feinstein’s “A History of Autism: Conversations with the Pioneers”

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.

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11 Responses to Review of Adam Feinstein’s “A History of Autism: Conversations with the Pioneers”

  1. Sharon says:

    I’m ordering this book ASAP.

  2. Jim Reeve says:

    I can imagine the difficulty he’d have trying to interview many people with ASDs. I’m very interested in reading this book.

    • The vast majority of people that he interviews aren’t autistic – scientists, therapists, educators, parents who set up key organisations – but yes the book does include interviews with a number of pioneering autistic personalities too. The autistic individuals communicate fine in those interviews, sometimes quite beautifully in fact. Feinstein shares some interesting views and perspectives on the value of conversations with those who have lived autism, and (for example) how their experiences and opinions are shaped by labels.

  3. Hilary says:

    I found Grinker’s comments in Unstrange Minds on the history of the DSM fascinating, especially considering his father (?) I think was on the editorial board of earlier editions. Grinker, an academic, has been commenting on the progress toward DSM-5 in various newspaper op-ed pieces. He is also a parent of an autistic child whose presentation of autism has changed quite dramatically over the years as she has grown up. His wife (a psychiatrist I think) is involved with the NIH’s Autism committee which has been doing major policy work in the field.

  4. Hilary Stace says:

    I haven’t read Feinstein’s book and must get it, but I have read his blog and online articles over the years. He is probably Jewish from his name, so I wonder if that made him a little more sympathetic to Bettelheim (Kanner was also Jewish) than I think he deserves, as Bettelheim’s development of Kanner’s refrigerator mother theory has hurt many women over many decades and his methods with the children in his care were apparently also abusive.

    I wrote a little article about this (and the influence of eugenics and the war) a couple of years ago http://web.ebscohost.com/ehost/pdfviewer/pdfviewer?sid=2695d979-15df-439f-aeee-36097efb3e97%40sessionmgr10&vid=1&hid=13 (if this link doesn’t open I can send you another one).

    It is also mentioned in chapter four of my thesis on autism policy which I finished late last year .http://researcharchive.vuw.ac.nz//handle/10063/1920
    Since then I have found out more about the ‘silent holocaust’ whereby hundreds of thousands of disabled people including children were experimented on and euthanised under the Nazi regime (but led by the clinicians). Asperger seems to have been a kindly man who was probably well aware of the danger to children of any ‘disability’ diagnosis, hence his strengths based approach for a group of children which seems quite similar to the US group Kanner was looking at much more negatively at the same time..

    • Hi Hilary,

      I wouldn’t say that Feinstein set out to provide a sympathetic picture of Bettelheim, rather he presented the facts and explained some of why Bettelheim was received the way he was at the time. It was more that I personally understand and sympathise with what was going on with Bettelheim (in a way that I simply didn’t before), though that doesn’t mean of course that I agree with him or that what he did was excusable (particularly as he continued to deny and ignore new scientific findings about the nature and possible causes of autism).

      The link to your article doesn’t work, I’d love to read what you had to say, could you provide another link?

      I look forward to having a read through your thesis!

      And yes, what you say about Asperger matches what Feinstein talked about too; the way that he tried to protect the children under his care from the Nazi regime, and the focus he chose to put on their strengths. There are some interesting points made in Feinstein’s book too about the way Asperger had to conduct himself under the regime; the language he had to use when publishing his findings for example.

      Thanks for your thoughtful comment.

  5. Hilary says:

    I suppose I grew up in an era when Bettelheim was still very influential, and according to one of my main thesis informants the earlier generation of parents of New Zealand children with autism suffered ostracism and prejudice because of the predominant view (fuelled by his very popular and well-known theories) that their child’s autism was their fault. After Bettelheim’s death many of his former patients accused him of abuse. So I’m less sympathetic to him, but acknowledge he was a product of his time and experiences.

    There are some interesting chapters about Bettelheim in the following book: Osteen, M. Ed. (2008) Autism and Representation. New York, Rutledge. It is a compilation of papers from a fascinating conference about how autism is represented in media, film etc (and one which I would have loved to go to).

    Here is a better link to the article I mentioned http://www.wsanz.org.nz/journal/docs/WSJNZ242Stace66-70.pdf
    Here is a bit about my thesis http://humans.org.nz/2012/02/13/%E2%80%98moving-beyond-love-and-luck-building-right-relationships-and-respecting-lived-experience-in-new-zealand-autism-policy%E2%80%99/

    • Thanks Hilary.

      Though I didn’t grow up in a time when scientists still blame autism on the parents, I have gone through years of being blamed by others – both the general public and people very close to me – for my son’s autism (when they weren’t busy denying that “autism” is real in the first place, or that he even had it (which was never in doubt from the professional stand-point)).

      These attitudes didn’t just arise with Bettelheim (Kanner was somewhat of this mind set too for a long time), and didn’t die with Bettelheim (look at France, and at the recent issue with the Irish magazine piece).

      Yes Bettelheim was clearly a key player in it all, but the man suffered through Nazi Germany and eventually committed suicide, and he lived his life thinking (wrongly) that he was saving these children, he was also operating at a time when his ideas were already present in the literature and contemporary views, the science wasn’t even capable of what it is now (though it did advance during his lifetime).

      The people who are truly horrendous are those who in this modern era ignore all those advances and still ignorantly and blindly blame parents. We are going to have to agree to disagree on whether Bettelheim is as evil as all that.

      I really appreciate the links and referrals on to other books and sources, I look forward to reading the material.

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