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Monday, December 28, 2015

In A Different Key: A New History of Autism

This history of autism by John Donvan and Caren Zucker comes on the heels of Neurotribes by Steve Silberman which was published in 2015.  In A Different Key will be published this coming January.   I haven't yet read Neurotribes.  Based on comments I have seen, these two books have different perspectives on various topics.  I saw an open request for reviews of In A Different Key on Goodreads and received a copy from Net Galley.

I will use the term autist in this review.  I first encountered it in The Autistic Brain by Temple Grandin, but in Wiktionary the earliest usage was in 1995 by Oliver Sacks in An Anthropologist on Mars. Just as a matter of practicality, I feel it's better to use one word rather than two (e.g. autistic individual) especially when I'm going to be typing it often.  Donvan and Zucker don't use autist in their book.

My own association with autism is primarily through friends who are parents of autistic children.  I have recently come to know an autistic adult.  I also believe that I have known autists who have never been diagnosed because they are high functioning.  In earlier generations the criteria for autism were narrower, and diagnosis much less frequent. I have read several books by Temple Grandin , the memoir of Eustacia Cutler (Temple Grandin's mother) which I reviewed on Book Babe here, and a few memoirs by other autists.  I knew nothing about the history of autism before reading In A Different Key.


 I might not have decided to review In A Different Key if I had known how long it was.   That's the main reason why I haven't read Neurotribes yet. Both are important books, but they are quite a time investment. I had to put In A Different Key aside several times due to other commitments.   It took me almost all of December to read it.

This isn't a dry academic tome although it does have endnotes and a bibliography.   It's a book written by journalists for a popular audience.   Their priority is to tell a compelling story which they do with style.   I also feel that they try to include all perspectives though I think they have strong opinions of their own on this topic which are implied by their manner of presentation.  Caren Zucker is the mother of an autist.  John Donvan's brother in law is an autist.   

We get the life stories of all the important players in the history of autism, so that we know what motivated them.

I was very interested in Leo Kanner, the first to diagnose someone as autistic in the United States.  He was an Austrian Jew who arrived in the U.S. in 1924.  At the time that he diagnosed Donald Triplett in the 1940's he was considered the leading child psychiatrist in the country.  He was on record as being publicly opposed to euthanasia for the disabled which was probably motivated by his knowledge of Nazi extermination.  He arranged for the emigration of numerous Jewish refugees to the U.S.  during WWII.  Yet as far as autism is concerned, Kanner seems to have vacillated a great deal.  It seems to me that he became overly impressed with every new approach that showed promise.  He is still historically important.  I would like to read his autobiography, but it looks like I'd have to go to the APA archive and get permission for access to it. 

Austrian autism researcher Hans Asperger has been the subject of ongoing controversy about whether he was a war criminal during WWII.  According to a review in the UK publication The Spectator by UK autism researcher Simon Baron-Cohen, Steve Silberman, the author of Neurotribes came to the conclusion that Asperger wasn't a war criminal.  (To be completely fair, not everyone agrees that this was Silberman's conclusion.  Yet I've read more from those who believe that he vindicates Asperger.) Baron-Cohen doesn't mention whether Silberman had access to the unpublished documentary evidence discovered by Third Reich medical historian Herwig Czech which indicates that Asperger participated in a Nazi extermination program for children who were considered too disabled to ever become functional.   The authors of In A Different Key did have access to this evidence. I read excerpts of what Asperger wrote in reports about the children, and other rather damning statements that Asperger made. 

One of the reasons why Asperger was thought to be innocent was because he was a devout Catholic.  Yet the Catholic Church gave known Nazis certificates that cleared their reputations of any possible charge that they had been Nazis.  Such a certificate was called Persilschein after the German laundry detergent, Persil.   There is a book written in German about this subject  in the bibliography of In A Different Key. It was published in Frankfurt in 1991. The title was translated to English as Persil Certificates and False Passports: How The Catholic Church Aided The Nazis by Ernst Klee. Austrian medical  historian, Michael  Hubenstorf  was highly suspicious of Asperger because he was a member of a Catholic organization called Bund Neuland that was deeply anti-semitic and published Nazi propaganda about Jews.  It seems to me that Donvan and Zucker did their research on Asperger thoroughly and that their condemnation of Asperger is very justified.

The highly functioning autists who identify with the label Asperger's Syndrome would also refuse to believe that Hans Asperger was a war criminal, I imagine.  In A Different Key describes how upset they were when Asperger's Syndrome was dropped as a diagnosis from the APA diagnostic manual.  The main reason wasn't Asperger's activities during WWII.  It was because Asperger's Syndrome was thought to be vaguely defined and therefore not very useful.   I think that the concept of autism in general is just as amorphous, but I will never use Asperger's Syndrome to describe high functioning autists again.   I don't think a war criminal should be honored with a syndrome. 

There was a statistical revelation in this book that was quite significant.  In 1963 autism researcher Victor Lotter was hired by Middlesex County in England to discover how many autistic children would need services. This was the first time anyone had ever tried to determine the prevalence of autism. The description of Lotter's process showed the subjective nature of autism diagnosis.  The description of how he arrived at his results showed how inaccurate statistics can be.   He put the 61 children he'd decided were autists on a list that he ordered from most impaired to least impaired and then eliminated those below 35.  He didn't know for certain that the children he'd eliminated wouldn't need services.  It was an arbitrary decision.  He then reported that 4.5% of the children in Middlesex County were autists.   This somewhat bogus statistic was later generalized to the entire world by researchers, and was more recently used to argue that there is a world wide autism epidemic in the 21st century.  This shows that social scientists should be more cautious about drawing conclusions from statistics. 

I learned from In A Different Key that one treatment used on badly behaving autistic children became more widely used.  In 1964 autism researchers Wolf and Risley were the first to use "time outs" which gradually decreased the tantrums of an autist only known as Dicky.  Wolf and Risley believed that the tantrums were an attention getting strategy.  If he was sent to the time out room, he got no attention from anyone.   Eventually, Dicky's tantrums stopped all together.  This was an important outcome because corporal punishment was much more common before the discovery that time outs could be effective.

I considered In A Different Key one of the best books I've read in 2015 because there was so much that was completely new to me.  I will be thinking about this book for some time.



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