NeuroTribes: The Legacy of Autism and the Future of Neurodiversity

“The good and bad in a person, their potential for success or failure, their aptitudes and deficits – they are mutually conditional, arising from the same source,” Hans Aspergers

Book Review

by Debra Muzikar

Steve Silberman, a seasoned journalist and adept storyteller has compiled an ambitious historical book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity which this week has debuted on the New York Times bestseller’s list at #8. The book is over 500 pages and worth the read.

The crux of the book is that autism has always been around and the “autism epidemic” was promoted by a group of people who are invested in their position that vaccinations and environmental pollutants are why more people are being diagnosed on the autism spectrum. The “autism spectrum” is a description introduced by the British clinician Lorna Wing to cover the broad range of functioning levels.

Silberman peppers his book with vignettes of quirky creative people throughout history who were not diagnosed but displayed clear signs of autism including obsessive interests in their passions and a lack of social skills. Some of these individuals are shown to be on the cutting-edge of science and technology.

After observing the high incidence of autistic children born to his friends in Silicon Valley (techies and CEO’s), Silberman penned his 2001 Wired Magazine article The Geek Syndrome which explored the phenomenon questioning whether math and science genes were to blame.

The reader is adeptly lead through the book to show how the diagnoses over the last century have changed and how the prevailing mood of the time determines therapies and prognosis for patients.

Silberman starts with the councils on Eugenics which lead to the “master race” agenda of Hitler and the Nazis. We are transported to pre-war Vienna during the 1930’s and 40’s where the clinician Hans Aspergers was treating “abnormal” children. Silberman asserts the autism Aspergers observed was “‘not at all rare,’ was found in all age groups and had a broad range of manifestations, from the inability to speak to an enhanced capacity for focusing on a single subject of interest for an extended period of time without distractions.”

Hitler’s “Final Solution” began with the murder of a child who had been declared an idiot by his doctors. To protect the children in Asperger’s clinic, the potential for genius was promoted. At one point, Aspergers maintained the children could break codes for the Reich. Nevertheless many disabled children were the victims of gruesome experiments and extermination. The first German atlas of anatomy was a product of some of these experiments.

Another psychiatrist, Leo Kanner, who is Jewish escapes Vienna and starts his practice in the United States. Kanner who is described in the book as an astute clinician but opportunistic and ego-driven, coins the term “early infantile autism” after observing eleven patients who displayed a will to self-isolation and an “obsessive desire for the maintenance of sameness.” Kanner determines the condition is rare and a form of childhood schizophrenia.

Now this is where the story gets interesting. Silberman in his research has discovered that both Aspergers and Kanner worked with the same clinician George Frankl. George Frankl may have gone along with Kanner’s theories of a rare disorder instead of a broad spectrum as Aspergers had promoted because of his indebtedness to Kanner for sponsoring his asylum from Vienna. During this gruesome time in history, many Jewish clinicians and psychiatrists were exterminated in concentration camps. Silberman hypothesizes that Kanner knew of Aspergers work because George Frankl worked closely with him and Kanner was fluent in many different languages. He was well-read in the field and it would be highly unlikely if he was not aware of Aspergers and his work. Kanner, however, never mentions Aspergers in his writings and (willfully?) ignores Aspergers theories about a broad spectrum. During Kanner’s practice, he only classifies 55 children with infantile autism, as he focused only on the early years of their lives.

Silberman maintains that Kanner’s assertion that autism was rare lasted for decades and contributed to the mass misdiagnosis of children in the sixties as schizophrenic, as well as to the promotion of the theory that there is an “autism epidemic.”

Silberman reviews the changes in the diagnostic manual (DSM) and other diagnostic tools over the last decades. Of interest is the DSM-IV editors made a crucial mistake in the writing of their manual. The diagnostic criteria for PDD-NOS substituted the word “or” for “and.” During the years 1994 through 2000, this caused “about 75 percent” of children being diagnosed to be incorrectly classified as PDD-NOS. Silberman maintains this may be a valid explanation for the years the mysterious “autism epidemic” took hold.

Other chapters go through a sad history of lost children – moms and dads who were blamed for their children’s autism; children being ripped away from their parents and placed in isolation; drug experiments that included the use of LSD; children being shocked and denied food in laboratories promoting aversive therapies (Lovaas); children being psychoanalyzed for thousands of hours; and biomedical experimentation which includes bleach enemas today. Well-meaning parents often become victims of physicians and therapists who promote wonder cures. Autism is a multi-billion dollar industry. Silberman makes it clear that many unscrupulous people have benefited financially and professionally from the vulnerabilities of parents and their children.

A shift in paradigm and authority occurred in the 1960’s with the creation of the first parent support group. The parents shifted the focus from bad parenting being the cause of autism to genetics and the environment. Bernie Rimland, a parent, became a powerful force who would be instrumental to putting the “refrigerator mother” theory to rest. (One country, France, still believe in this theory and psychoanalysis as the major intervention for autism).

Later Gloria Rimland, Bernie’s wife, reflects “One of the most important thinks I learned from his (Mark’s) teachers was to work with his strengths rather than trying to correct his deficits. Bernard and I were so focused on what he couldn’t do … once he figured out he loves art, everything else came along with it, because it feels good to do something you’re good at doing.”

The idea autistic people communicate through their behavior and can communicate with others through their special interests were novel ideas in the 1980’s brought up in the book through the words of Jim Sinclair, one of the first autistic self-advocates.

“Being autistic does not mean being inhuman. But it means that what is normal for other people is not normal for me, and what is normal for me is not normal for other people,” Jim Sinclair.

Technology and the internet have revolutionized the way autistic people communicate and socialize. The book brings out many important issues such as the term low-functioning can obscure talents and skills; there is not a non-autistic person inside the body of an autistic shell of a person who is waiting to be rescued; parents who grieve too long can harm their child; talking to real-live autistic people can be more beneficial to parents than talking to the so-called “experts,” the idea that neurodiversity may be as critical for the human race as biodiversity is for the environment; autistic people are no longer willing to be “spectators in their own stories,” and instead of investing money in genetic research we should be investing in autistic people and their families.

The book as a whole is thought-provoking and has led Kurt (my husband) and me to follow-up on many of Silberman’s assertions. One criticism is the footnotes at the back of the book are not done in a conventional format – they are randomly attributed and hard to locate in the text (as opposed to numbered footnotes in the text). Steve has informed me this is standard practice. I guess we read too many academic books! A reader has informed me that Hans Aspergers never used the word “Little Professor” as stated in the text. Silberman points to a translation of Aspergers work by Uta Frith yet Dr. Frith could not corroborate this term was ever used by Aspergers himself. As Judy Endow states in her review of the book, this could be Book One There were many “left outs”.

Silberman shares informative sites on his website and in the book. I will share a couple of links here:

Autistic Self-Advocacy Network (ASAN)
The Thinking Person’s Guide to Autism

Overall recommendation: I highly recommend this book and consider it a must read for anyone who is interested in the politics and history of autism.