In a Different Key: The Story of Autism

One week ago I received the book by Donvan and Zucker, “In a Different Key”, detailing aspects of the history of autism. This was the hardbound edition that sold from Amazon at the bargain price of $18. At first I had misgivings about reading it. Nowadays efforts by journalists often offer a biased perspective aimed at selling books rather than anything else. Furthermore, when considering the size of the book (over 600 pages), I thought the story would unravel in tangents that ultimately contribute little in terms of the subject at hand. My preconceptions originated from having read the book Neurotribes by Silberman, a thin-skinned journalist who massaged historical facts in order to publicize Neurodiversity credos.

My preconceptions about Donvan and Zucker’s new book were ill-founded. This is a must read for anybody interested in autism. The book is a well-balanced exposition giving the positives and negatives of many aspects of autism; as an example, the authors praise Asperger’s work as a clinician but simultaneously expand on his role as a murderous criminal within the Nazi regimen. They also give appropriate credit to AutismSpeaks but then detail some (not all) of the controversies that have followed. Other juicy details, e.g. IMFAR’s first meeting, occurred behind closed doors and may not have been accessible to the authors.

The book, In a Different Key, is not the complete history of autism; such an endeavor would have required several thousand pages. However, I liked the fact that the authors didn’t only go after the lowest-hanging fruits but engaged themselves in a good amount of investigative reporting for which the book is carefully annotated with references. Instead of attaching labels to historical figures and partaking in flights of the imagination, Donovan and Zucker investigated autism’s historical antecedents in the blessed fools of Russia, Hugo Blair (a case report by Uta Frith), feral children, etc. As an aside, I thought that feral children (those raised in the wild) as illustrated by Victor of Aveyron, although having a claim in the history of autism (see Autism: Explaining the Enigma by Uta Frith), should have been carefully delineated. In the end feral children are not autistic.

The book reinforced my profound respect for the founders of the National Alliance for Autism Research (NAAR) and Cure Autism Now (CAN). I belonged to the first advisory board of NAAR in 1994. I remember Eric London coming to pick me up at the airport in his old station wagon. NAAR was for many years a mom and pop operation with only a 5% overhead. This would drastically change when they joined AutismSpeaks. Simultaneous to Eric’s efforts Portia Iverson from CAN was making a presence for autism everywhere. I was surprised when one day she called me after publishing an article on minicolumns and autism in order to learn more about the discovery. Among her many achievements, not the least, was the fact that she brought Tito Mukhopaadhyay and his mother Soma to the United States. Soma herself introduced the Rapid Prompting Method to our country thus helping hundreds of individuals within the spectrum.

Despite all of the positives I thought the book offered an anglophile’s perspective on autism by limiting its descriptions to events that happened within the United States and England. Christopher Gillberg is mentioned in passing but many international luminaries, for example Maria Isabel Bayonas, are missing. England may have had the first national autistic society but Spain closely followed. APNA had its first international autism congress in 1978 with 1,800 delegates attending from all over the world. Among the plenary speakers at the congress were Bernard Rimland and Ivar Lovaas. Similarly, a chapter detailing the success of communities of autistic individuals should have been included. At present Mas Casadevall has been operating in the small village of Serinya, Spain for some 27 years. Similar efforts have followed in England and more recently in the United States. I never expected a low caliber book like Neurotribes to deal with any of these subjects, but I expected more from In a Different Key.

Donvan and Zucker’s book should have devoted more attention to the DSM controversy. The story of a scientific article from Yale that raised concerns about the exclusion of many people with an autism diagnosis could have been better explained. The scientific article per se jumped the gun in re-analyzing data based on criteria that had not yet even been approved or published by the DSM5 committee. The authors would have probably gained some insight as to the personal tug of war that happened by interviewing Sue Swedo, the person who headed the DSM5 committee. For those interested in reading more see Gary Greenberg’s, “The Book of Woe”.

Although, not necessary to discuss, one of my personal peeves in the history autism involves cases of regression. Once considered very rare, it is now acknowledged that they entail a significant portion of cases. This recognition as well as many other facets of autism (e.g., sensory problems) that are presently only being re-discovered in the medical literature have been, in part, due to the combined efforts of parents and autistic individuals.

I loved reading this book. It was at times funny and at other times gut wrenching. I truly empathized with some of the stories in the book. My own grandson, Bertrand or Little Bear, was dismissed from an expensive private school because the teachers did not believe that he could be taught. At present he is toothless not because his teeth were extracted due to self-injurious behaviors but because of bruxism. Bertrand, my little bear, still wears diapers, needs help when feeding, and suffers from multifocal seizures. Two of my daughters moved closer to Little Bear’s mother to help raise him. When it comes to a severely impaired child it sometimes takes a tribe to help raise them.

I am happy that some authors, contrary to Mr. Silberman, take the plight of my grandson and those of similarly affected families seriously. In a Different Key is a thoughtful exposition of autism. Knowing a good amount on the subject, I did not notice major flaws, only positives. To the authors I express my gratitude for putting the history of autism in perspective and humanizing the efforts of both parent and autistic individuals.

References

Uta Frith: Autism:Explaining the Enigma, Wiley-Blackwell, 2nd edition, 2003.

Gary Greenberg: The Book of Woe: The DSM and the Unmaking of Psychiatry. Plume, reprint edition, 2014.

For those interested, another good book on the history of autism is that of Adam Feinsten: A History of Autism: Conversations with the Pioneers. Wiley-Blackwell, 2010.

Some previous blogs by this author in regards to Neurotribes:

Neurotribe or Diatribe? https://corticalchauvinism.com/2015/11/16/neurotribe-or-diatribe/

Steve Silberman and His Tribe of Nazi Sympathizers: https://corticalchauvinism.com/2016/01/23/steve-silberman-and-his-tribe-of-nazi-sympathizers/

2 responses to “In a Different Key: The Story of Autism

  1. Odd. Today I posted the following comment in a post of Autistic UK:

    Russell, has it ever occurred to you that you are calling yourself “autistic” because of a Nazi collaborationist who, in a time of war and death, chaos and confusion, has written a paper that was misinterpreted when discovered a few years after his death? I will never allow the name of Dr. Asperger to be attached to my self-identity.

    What did Russell do?

    He sent me a link and invited me apply for full membership in Autistic UK.

    Like

  2. I think the comment would apply to those who prefer to label themselves as having “Asperger”. Autism per se was introduced by Bleuler when describing symptoms of schizophrenia. However, I understand very well what you are saying.

    As an aside that has been a better reaction than anything else you have experienced as of late.

    Like

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