NeuroTribes

Steve Silberman’s 2015 book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity takes a fascinating look at the history and science of autism. Tracing the origin of autism back to research pioneers Leo Kanner and Hans Asperger, Silberman explores the questions of what autism actually is and why the number of diagnoses has risen so dramatically in recent years. The author also investigates the concept of neurodiversity, considering the notion that neurological issues such as autism are not errors of nature or consequences of a modern toxic world. Rather, they are products of natural variations in the human genome. Through his examination of autism, Silberman seeks to reshape our understanding of the meaning, history, and implications of biodiversity.

Silberman begins by taking the reader back to the origin of autism, which was identified by two separate scientists, Leo Kanner and Hans Asperger, around the same time. The difference is that Kanner published his work in Baltimore, whereas Asperger, unfortunately, published his work in Nazi-controlled Vienna. During his time at the Children’s Clinic in Vienna, Asperger studied more than 200 children whom he would treat for what he termed autistische Psychopathen (autistic psychopathy). Some of the children were prodigies who struggled with school. Others suffered from greater disabilities and were put into asylums. All, however, had in common a family of symptoms that included precocious abilities, social awkwardness, and an intense focus on laws, rules, and schedules.

Asperger recognized that these symptoms exist on a continuum occupied by both children and adults. He, however, viewed these differences in a positive light—a cause for celebration, rather than distress. His reason for focusing on his higher-functioning patients when he finally shared his research with the world was due to the era. The Nazis were intent on purging the land of the “feebleminded” and thus euthanized large numbers of institutionalized children. As a result, Asperger unintentionally gave the impression that autism was a rare condition that affected young geniuses, rather than the common syndrome he had discovered. The paper he published about his research in 1944 was unavailable in English for several decades, and the clinic that held his records was bombed that same year.

In the United States, meanwhile, psychiatrist Leo Kanner was developing a distinct picture of autism. He believed the condition to be unique and uncommon, only affecting young children. Although he believed it to be biological in origin, Kanner thought the disorder was activated by cold, withholding parents. In making autism the fault of parents, Kanner inadvertently made the syndrome a source of stigma and shame for families around the world. As a result, parents attempted to track down any potential cure, including shock therapy and LSD. Importantly, Kanner’s narrow definition of the condition prevailed for an extended period of time, which caused the public to believe a sudden “epidemic” of autism was underway when the DSM-III-R was published in 1987 (and the DSM-IV in 1994) because the definition finally expanded to include the full scope of relevant symptoms.

Silberman thus concludes that the autism pandemic of recent years is actually an illusion brought about by diagnostic error. If the definition of autism had originally included Asperger’s expansive vision, it is possible, says the author, that we would not have been hunting down environmental causes or blaming parents.

Silberman touches on the subject of vaccinations and the myth of their link to autism, noting the study published by Andrew Wakefield in 1998 that suggests vaccines cause autism has been debunked several times and was retracted by The Lancet. Wakefield’s study continues to have a damaging effect on public consciousness.

Turning to the concept of neurodiversity, Silberman asserts that it is the idea that conditions such as autism, ADHD, and dyslexia should be considered as naturally occurring cognitive variations that produce distinctive strengths that contribute to the evolution of culture and technology, rather than lists of dysfunctions and deficits. Advocates of neurodiversity suggest that rather than viewing autism and other disorders as errors of nature to be eliminated and puzzles to be solved, society ought to see such conditions as valuable components of the genetic legacy of humans. At the same time, he says, we should seek to ameliorate the features of autism that are severely disabling if adequate support is not provided.

In the future, rather than investing millions of dollars in efforts to uncover the causes of autism, Silberman maintains that we should help autistic people and their families to live healthier, happier, and more productive and secure lives in the present. The author ultimately concludes that autism is a lifelong disability that calls for support, rather than a children’s disease that can be cured. This is, he says, the oldest idea suggested by autism research, but it has been forgotten.