How do you classify a condition like autism? The condition affects so many different people in such different ways that, the saying goes, “If you’ve met one person with autism, you’ve met one person with autism”. How can a condition that may have affected as diverse a group as Alan Turing, Leonardo Da Vinci, Temple Grandin, and Emily Dickinson be treated? What, or who, is to blame? What is there to celebrate in a life with autism? Our understanding of autism has changed so much and NueroTribes: the legacy of autism and the future of neurodiversity covers every step of that change, from asylums, to Rain Man, to the Neurodiversity movement. Once autism was thought to be a rare form of childhood schizophrenia, now 1 in 68 children are identified with Autism Spectrum Disorder. With numbers like that, a closer look at the history of this disorder is past due.
In the first part of the 19th century autism was studied by both Dr. Leo Kanner and Dr. Hans Aspergers. They came to startlingly different conclusions, treating people with the condition very differently. Ever since, there has been an ongoing debate about just what autism is. This debate affects people with autism, their families, their schools, their communities, and, in a world where many unusual and creative people could be “on the spectrum," this debate affects us all.
In the past no one knew how to deal with autism. Doctors flailed around, trying to cure autism with electroshock and LSD. Professor Bruno Bettelheim helped to popularize the “refrigerator mother” theory, blaming mothers for autism. Doctor Andrew Wakefield suggested a link between vaccinations and autism (that has been discredited). And every time the DSM (The Diagnostic and Statistical Manual of Mental Disorders ) comes out, the professional definition of autism seems to change. Each time the definition changes, then the question of who is entitled to services and treatment has to be readdressed.
Meanwhile, there are people trying to live in a world that doesn’t seem to fit them, a world that places too much emphasis on spoken communication, where their daily world is filled with horribly disruptive sensations, and where strange, unspoken social cues confuse even simple interactions. There are families who work relentlessly to ensure the best lives possibly for their loved ones. Some search everywhere for a cure. Some embrace alternative therapies and develop their own methods for dealing with everything from doctor’s visits to occupational therapy. Some families, far too many, face endless battles with school systems and insurance companies to get services and education for their children.
NeurotTribes is the story of a struggle, fought day by day. As you read this book, it becomes clear that the people who work on autism are, for the most part, tremendously devoted, fierce and relentless. And, with the use of modern tools, people dealing with the autism spectrum disorder have a greater chance to reach out, to live their lives, and finally tell their own stories.