NeuroTribes: The Legacy of Autism and the Future of Neurodiversity
NeuroTribes takes readers on a journey through the history of autism from the turn of the 20th century. The determination to carve out all eccentricities—the very eccentricities that built the ship humanity stands on—faltered our course. Hence, the book departs from the port that pathologizes autism to one that revels in its contribution to human civilization.
The first few chapters were as gripping as they were devastating. To think that our differences were met with such intolerance is a haunting reminder of life a mere hundred years ago.
The tide was turning in the early 20th century, and the the field of “eugenics” was used not only against the institutionalized children and wayward of society, but also against the entire population. In Germany, the juxtaposition of science and nationalism was being seized by Hitler that led to one of the most merciless and tyrannical periods of history.
Efforts to recognize the value of autistic people were spearheaded by a pediatrician named Hans Asperger in Vienna. Despite his best efforts to convince people, he was tossed into the sidelines and forgotten for decades. Meanwhile, across the Atlantic, another researcher named Kanner, was celebrated and acclaimed for his perspective on autism. Unfortunately, Kanner's narrow and monlithic model was a setback to the understanding of Autism. His view was that the “syndrome” was limited to childhood and caused by the callous indifference of caregivers. He became infamous for the "refrigerator mother" slogan, describing his patients as being,
““Kept nearly in a refrigerator which didn’t defrost”.
The idea that mothers who were cold and nonchalant caused their children’s autism caused a deep-seated sense of shame in parents of autistic children. It was not until other researchers, like Bernard Rimland, who emphasized the biological bases for autism that later challenged Kanner’s damaging perspective. Despite the tumultuous shifts and pivots in the United States, much progress was made. However, it lagged behind the quiet achievements of research elsewhere.
Much like the tale of the tortoise and the hare, While the US was consumed by a constant stream of new pathologizing labels and conspiracy theories, the UK quietly steered away from the extremes. In England, Lorna established the term “autism spectrum” which allowed for individualized and nuanced diagnoses. She compared this christening to the creative and eccentric interplays and exhibits of nature, saying,
"Nature never draws a line without smudging it."
One of my favorite parts about this book is the thread of love that runs through the chapters.
I so loved the focus on individual families, such as the one in “The boy who loved green straws”, which helped place me in the challenges of dealing with scarce information and limited time. When mainstream medicine had still not come up with treatments of care for autism, parents sought out different avenues that could provide them with a sense of control. Moreover, as the number of autism diagnoses seemed to rise, speculation emerged about the potential role of pollutants in driving this development. While this was later debunked, there actually was a period of time when cases were alarmingly high, and for good reason.
To my surprise, an error in the DSM was behind a significant increase in the diagnoses of children between 1994-2000. Instead of requiring that a child must display impairments in social interaction, communication, AND behavior to receive a diagnosis, the word AND was replaced with OR. This seemingly innocuous error went uncorrected for years, resulting in a significant number of misdiagnoses.
While this book was an enjoyable read, there are a few areas for improvement:
1. The author focuses on the historical approaches of the United States, the UK, and Vienna, without much regard for other approaches and cultures around the world. I would have liked to see a more global perspective.
2. The book also lacks a detailed exploration of the Autism spectrum. However, the reader can infer behaviors and modalities by reading in between the lines through learning about oral histories and diagnoses. For those who are looking for a straight-forward manual, this book is not for you.
3. The title is slightly misleading. Seeing the words “Neurodiversity” written in bold on the front cover, I approached the book thinking there would at least be a single chapter on that. However, the topic of neurodiversity was only briefly mentioned in the last few pages.
Bonus: My favorite story mentioned is about an elderly man named Bill.
...
After being institutionalized at the age of seven, Bill only saw freedom more than 40 years later. Finding joy in daily things including passing cars and people going to work, Bill seemed to be experiencing life as if for the very first time. Soon enough, an unlikely friendship blossomed between him and Morrow—a young man in his 20s. However, after Morrow left for Iowa for a new job with his family, Bill’s health deterioriated. His ulcerated leg was at risk of being amputated, which would result in him moving back in an institution, bedridden for the rest of his days.
Upon finding out, Morrow took matters in his own hands and brought him under his care. This, according to Minnessota authorities, could be grounds for kidnapping. So a case was needed for Morrow to become his legal conservator.
On the day of the hearing, Morrow put in all the extra effort to ensure that he would be taken seriously and appear like a truly competent conservator. He asked Bill to stay silent throughout the meeting. When it appeared, things were not proceeding as planned, Bill interrupted saying,
“Let us pray!”
..
“Our father who art in Heaven, hollow by thy knee….And thank you dear Lord, for bringing me my buddy Mister Barry, he takes good care o’ me. I got a bird named Chubby, I got a good life now, and I don’t want to ever go back to that hellhole—you know that, Lord……amen”
A brief silence followed, and the official form was signed which Bill christened “on-my-own papers”.
He later worked at a café in Iowa until his passing. Wild Bill’s café continued to operate and employ people with disability until 2020, It is now a learning lab as part of the University of Iowa.