Neurotribes: The Legacy of Autism and Future of Neurodiversity (Book Review)

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Book Review

NEUROTRIBES: THE LEGACY OF AUTISM AND FUTURE


OF NEURODIVERSITY (BOOK REVIEW)
Badr Ratnakaran
Resident in Psychiatry, Dept. of Psychiatry and Behavioural Sciences, Virginia Tech Carilion School of
Medicine, Roanoke, Virginia, USA.
Correspondence: 2017, South Jefferson Street, Roanoke, Virginia, USA-24014. Email: [email protected]

Title: Neurotribes: The Legacy of Autism and Future of Neurodiversity


Author: Steve Silberman
Publisher: Avery Publishing
Pages: 542
Year: 2015

We, as doctors, are many a times enamored by Immunodeficiency Virus and subsequently the
the stalwarts in the field of medicine. Acquired Immune Deficiency Syndrome were
Hippocrates, William Osler, Sigmund Freud, discovered. It tells the story of struggles of the
Watson and Crick, etc. are names well known to patients and the medical fraternity who had to
us from our early years as medical students. face not only the stigma when it was initially
Their contributions have shaped our knowledge, conceived as a “gay disease” but also the apathy
and some of us aspire to leave a mark in the field from the government and ego clashes between
of medicine just like them. scientists researching the disease. Stories like
these are not told in textbooks, and books like the
However, our textbooks mostly mention their ones mentioned above provide a humanistic view
names and contributions only in a sentence or to the field of medicine.
two. We do not know who they are as a person,
their stories, their struggles, and what led them There are numerous books on such narratives in
to their discoveries and achievements. This the field of mental illness. The late Dr Oliver
includes how the practice of medicine shaped and Sacks’ works have always been popular and
evolved in time with their contributions. captivate the imagination of the general public
Siddhartha Mukherjee’s 2011 Pulitzer Prize- with his accounts of fascinating presentations of
winning The Emperor of All Maladies: A neurological and psychiatric disorders. They
Biography of Cancer is one such book which have always left a lasting impression on us in
narrates the history of cancer from accounts understanding the overlap between the science of
about it in Egyptian and Greek civilizations to these two branches of medicine. Ultimately,
current advancements in its research and these accounts underline how fascinating our
treatment. Randy Shilt’s 1987 book And the Band brain is.
Played on: Politics, People and the AIDS
Epidemic chronicles how the Human
Please cite this article as Ratnakaran B. Neurotribes: the legacy of autism and future of neurodiversity (Book Review). Kerala
Journal of Psychiatry 2017; 30(2) Available at http://kjponline.com/index.php/kjp/article/view/132

Kerala Journal of Psychiatry // 30(2) July - December 2017 //www.kjponline.com 1


The book in review, Neurotribes: The Legacy of British Royal Society, a learned society of
Autism and the Future of Neurodiversity is prominent scientists in the world. This reviewer
written by Steve Silberman. Silberman is a feels that the following excerpt from the book
journalist for the WIRED magazine, which beautifully captures the essence of Lord
focuses on technology and how it shapes the Cavendish's behavior and how his colleagues
world around us. Neurotribes is a New York would deal with him:
Times bestseller and in 2015 had won the Samuel
Johnson award, a prominent literary prize for “It is not true, however, that he wanted to
nonfiction books. Before the release of this book, remove himself entirely from the company of his
Silberman had been well known for his article on peers; he just wanted to stand off to the side,
the impact of placebo effect on research in the soaking everything in. Two scientists conversing
pharmaceutical industry.1 on a topic of interest at the Royal Society's
Monday Club might notice a hunched figure in a
The catalyst for Silberman’s book was his article grey-green coat lurking in the shadows, listening
“The Geek Syndrome”, where he discusses the intently. Eager to solicit his appraisal of their
increasing number of children in the Silicon work, his fellow natural philosophers devised a
Valley, California, USA, being diagnosed with devious but effective method of drawing him into
autism.2 The book’s first chapter also starts from an exchange.
here on Silberman’s encounters with many
experts from science and technology. He notices “The way to talk to Cavendish is never to look at
their unique behavioral traits — from their him,” said astronomer Francis Wollaston, “but
fastidious fascination to science along with their to talk as it were, into a vacancy, and then it is not
innovative skills, social awkwardness, and unlikely, but you may set him going.” Once he
intolerance to sensory cues like the alarm from a was set going, it turned out that he had plenty to
washing machine which a normal person will find say. “If he speaks to you, continue the
tolerable or trivial. He finds that many of these conversation,” Wollaston advised.”
traits are many a times found in a much severe
form in the children of such people. This leads Similar to the above excerpt, Silberman, through
them to be diagnosed with autism. Thus starts anecdotes, describes the lives of various
Silberman’s inquiry into the beginnings of the prominent personalities who belonged to the
concept of autism and tracing its evolution autism spectrum (AS), including scientists
through time to our present world. Temple Grandin and Nobel Prize-winning
physicist Paul Dirac. We understand the
With his gripping narrative through twelve evolution of the concept of autism from
chapters, Silberman touches upon various themes “schizophrenic reaction, childhood type” in the
related to autism. It starts with his wonderful first edition of Diagnostic and Statistical Manual
account on Lord Henry Cavendish, the famous of Mental Disorders (DSM) in 1952 to its current
scientist from the 18th century whose many acknowledgement of it as a spectrum of
pioneering works include the discovery of symptoms as AS disorders in the current edition
hydrogen. Silberman describes a day in the life of of DSM. He describes the influence of popular
Lord Cavendish riddled by his preference of media on autism, including the movie Rain Man’s
social isolation. His daily life consisted of (1988) influence on spreading awareness on
numerous rituals and routines with a penchant autism when it had been a relatively unknown
for accuracy and precision in research .He was a entity, and the fascination for science fiction by
man of knowledge and his acumen was those belonging to the AS.
considered in the highest regard by the elite

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Through harrowing accounts of families and disease has a very low prevalence. He was
their children belonging to the AS, we are taken unwilling to accept that many of the criteria set
to periods where the prevailing treatments in by him in diagnosing autism had overlapping
psychiatry were based on psychoanalysis and characteristics with other conditions, including
behavior therapy. Many of the treatment childhood schizophrenia and schizoid
strategies were based on damaging theories and personality disorder. Kanner was also a staunch
treatment of autism including refrigerator supporter of psychoanalytic theories of autism,
mothers, holding therapy, parentectomy and including toxic parenting and refrigerator
acceptance of punishment as a therapy for mothers. Thus, Silberman portrays Hans
stereotypical behaviors displayed by autistic Asperger as a saintly figure, a hero; and Leo
children. We understand the genesis of the Kanner as a villain whose stubborn ego to change
controversy behind the association of MMR from his views might have thwarted the
vaccine and autism and the propagation of recognition of children belonging to the less
orthomolecular treatment for autism which had severe spectrum of autism. Silberman also
no scientific basis. In the process, we are hypothesizes that Leo Kanner, who knew
introduced to the rise and fall of George German, should have been aware of Hans
Wakefield, Bruno Bettleheim and Bernard Asperger’s works on autism. Especially since
Rimland, who were once considered experts on Kanner had worked with the Jewish psychologist
autism based on the above-mentioned concepts George Frankl who had also worked with Hans
but later became discredited and thus their fall Asperger before fleeing the Nazi regime. George
from grace. They were humans who started their Frankl, though not popularly credited, had been
journeys in efforts to help autistic children and the common denominating factor in both
their parents but fell to the follies of their egos Kanner’s and Asperger’s works on autism as their
and narrow-mindedness to accept their mistakes chief diagnostician.
or deviation from their views.
Coming to our present world, we see how
But, the book’s highlight lies in its biographical technology like social media brings together
accounts of two names synonymous with autism, people with autism and their caregivers. Using
Hans Asperger and Leo Kanner. Silberman, by online fora and arranging social gatherings, they
describing Hans Asperger’s story, takes us to fight for their rights, make friends, and help cope
Vienna under the Nazi regime. Silberman with each other. In the process, they find their
narrates the political atmosphere of the Nazi niche and a space of acceptance.
regime at the time and their eugenic policies.
Fearing that children with disabilities might be In the end, Silberman persuades us to see
persecuted due to these policies, Hans Asperger disorders like AS disorders, specific learning
might have selectively highlighted only savants disorders, attention deficit hyperactivity
belonging to the AS. With this effort, he might disorder, etc. as diverse presentations of normal
have tried to convince the Nazi regime that human behavior (or “neurotribes” as mentioned
people belonging to the AS might be highly by him). They should be seen as variants of
skilful and important for the society, thus trying cognitive difference and not a pathology. We
to save autistic children of all forms of severity. should work towards providing measures in
We learn about Leo Kanner’s humble beginnings helping them to integrate with our society rather
and his rise as the highest authority on autism than trying to fix them to our expectancy of being
during his time. But Silberman also describes normal human beings. This is the core idea
Kanner’s inflexible vision of autistic children behind the neurodiversity movement coined by
being severely disabled and his belief that the Judy Singer in 1999.3 In short, it is we who have

Kerala Journal of Psychiatry // 30(2) July - December 2017 //www.kjponline.com 3


to change to adapt to their needs rather than stories that have shaped what we practise today
expecting them to be cured and be like us. In that can inspire us to do much more. Ultimately,
Silberman’s words: “Just because a computer is we have to strive to be advocates for our patients
not running Windows doesn’t mean that it’s and try our best not to fall for our biases to our
broken. Not all the features of atypical human views on mental illness. There is much work to
operating systems are bugs.” be done in spite of our efforts so far.

Silberman’s humanistic and investigative REFERENCES


approach to autism makes his work akin to an
epic saga which is evident by the 500 plus pages 1. Silberman S. Placebos are getting more effective.
Drugmakers are desperate to know why [monograph
of the book. It is a long read. The language is
on the Internet]. Wired; 2009 [cited 2018 Jan 26].
simple and devoid of too many medical jargons Available from:
which very much helps the common man to https://www.wired.com/2009/08/ff-placebo-
understand the content and holds their attention. effect/
Throughout the narration of the book, we are 2. Silberma S. The geek syndrome [monograph on the
introduced to various characters and historical Internet].Wired; 2001[cited 2018 Jan 26]. Available
from:
events of the past century that have influenced https://www.wired.com/2001/12/aspergers/
our perspectives on mental illness, including 3. Jaarsma P, Welin S. Autism as a natural human
autism. The author goes at great lengths to variation: Reflections on the claims of the
describe them, providing the reader a vivid neurodiversity movement. Health Care Anal 2012;
picture of the practice of medicine, especially 20:20–30.
4. Desai MU, Divan G, Wertz FJ, Patel V. The
psychiatry, during different eras along with the
discovery of autism: Indian parents’ experiences of
political and socioeconomic climate during those caring for their child with an autism spectrum
times, including World War II. This helps the disorder. Transcult Psychiatry 2012; 4:613–37.
reader to understand why autism was viewed and
dealt in a different manner during different time
periods. However, this reviewer felt that the long Source of support: None
descriptions are many a times a deviation or a Conflict of interest: None declared
distraction from the main points Silberman tries ………………………………………………………
to highlight in his narrative. First submitted: 26th January 2018
Published online: 26th February 2018

Silberman’s focus of his message is more based


on his experiences: American culture, moderate
to severe end of the AS, those who belong to the
middle and higher socioeconomic status and have
access to resources for help. This might not be
generalised to the severe end of the autistic
spectrum and to countries like India which are
still behind in awareness among the general
population and accessibility to resources.4

The book, in the end, is a valuable and


entertaining read, especially for trainees in
psychiatry and other fields related to mental
health. They could learn that, beyond our tomes
describing medicine and therapy, there are

Kerala Journal of Psychiatry // 30(2) July - December 2017 //www.kjponline.com 4

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