In honor of Autism month, I am resharing this post I wrote many years ago on a previous version of this blog. As I reread it, it connects so much with the inspiring words of Norman Kunc and the Right to be Disabled that I wrote about in a previous post.
NeuroTribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman In this comprehensive, well researched, thought provoking book on the history, legacy, and current understanding and hopes for Autism, Steve Silberman shatters the myth that there is an epidemic of Autism. By digging deep into case files, scientific and artistic history, and medical records of many individuals previously identified as childhood schizophrenics and isolated to institutions, he makes a compelling case that Kanner’s original definition of the condition was always too narrow, leading to a misconception that it was rarer than it is. As a result, many individuals were misidentified as schizophrenic, hidden in institutions and subjected to completely inappropriate “treatments”. Silberman then makes a strong and compelling case for a de-emphasis of labels, and a celebration of neurodiversity and all it has given the world, and argues for schools and a society that is more accepting and accommodating of these neurological differences.
Leo Kanner is best know for “discovering” Autism in the 1930’s. He was the first person in the United States to identify the Syndrome as we know it today, though his first definition, and one that continued into the 1990’s, was very limiting and had the devastating twist of blaming the parents. He saw the Syndrome as something quite rare and was unwilling, despite evidence from colleagues who were noticing something similar that they were calling childhood schizophrenia, to accept that his original definition might need adjusting. As a result, many children were misdiagnosed, isolated into institutions, subjected to inappropriate “treatments”, and hidden away from society.
Meanwhile, in Vienna, during the same period, Dr. Hans Asperger was working in a clinic studying very similar patients, though came to very different conclusions. In his clinic Asperger saw the “. . . children in his care not as flawed, broken, or sick, he believed they were suffering from neglect by a culture that had failed to provide them with the teaching methods suited to their individual styles of learning” (84). Asperger saw these children as functioning on a continuum of impairment that impacted how well they could integrate into everyday society. He anticipated what we now call the Autistic Spectrum. He recognized that with the right support and interventions at the right times, along with acceptance of the unique gifts and challenges these children have, they were quite capable of much more than had previously been understood.
He used intensive observations in natural settings to build a profile of the students and then organized their time into structured skill development at their level and then extensive free time to play and explore their passions. (87). “In cases of learning difficulties, the question is never “How well or how badly does the child learn?” but “Why does the child learn badly?” and “Which is the best teaching method for him”” (104). These ideas are still progressive today and we can learn much from Asperger and his approach to schooling. Unfortunately for Asperger, his kids, and the world as a whole, when the Nazis came to power much of Asperger’s work was destroyed and the kids he worked with were some of their first victims.
It wasn’t until the 1990’s when the movie Rainman lifted Autism from the shadows, and researchers and parents finally shook the definition of Autism free from Kanner’s grip, that Asperger’s work resurfaced. Overwhelming evidence finally convinced the APA to adjust its definition of Autisim in the DSM-IV. It is in the revised edition that we finally have Autism defined as a Spectrum on which individuals have varying degrees of impairment and ability to integrate into society. These two events lead to Autism being more well known and more people being diagnosed properly. However, because it had been so previously misunderstood, misdiagnoses, and hidden away in institutions, many people began to believe that there was suddenly an epidemic of Autism, leading to panic and a desire to blame something – vaccines, the environment, pollution, allergies, etc. Thus began the Autism Wars and money that could have gone to supporting families went into looking for a “cure”.
With the advent of the internet, a medium very Autism friendly, adult individuals with Autism have begun to connect to form communities and to advocate for themselves. These communities and their supporters have been promoting the idea of neurodiversity and its necessity. An analogy used in the book is the idea of the brain as a human operating system. Just because it is not running Windows, doesn’t mean it is broken. “By autistic standards, the normal brain is easily distractible, is obsessively social, and suffers from a deficit of attention to detail and routine. Thus people on the spectrum experience the neurotypical world as relentlessly unpredictable and chaotic, perpetually turned up too loud, and full of people who have little respect for personal space.” (471) Neurotypical (NT) is the word individuals with Autism use to describe the “normal” brain. As these individuals are forming communities not unlike the Deaf Culture which celebrates the richness of the experience their unique profile allows, one activists Laura Tisoncik has created the Institute for the Neurologically Typical, which seeks to explain “normal” brains to people with Autism. On the site she defines NT as ” . . . a neurobiological disorder characterized by preoccupation with social concerns, delusions of superiority, and obsession with conformity. . . There is no known cure” (441).
It was the last chapters of the book that described these communities of individuals with Autism and the power of finding their “NeuroTribe” in which they could feel “normal”, that was so inspiring. As an educator, it challenged me to think about how we can build and organize schools that have greater respect for and understanding of neurodiveristy. Early in the book Silberman considers how far society has come in its understanding of these individuals. “One of the most promising developments . . . has been the emergence of the concept of neurodiversity: the notion that conditions like autism, dyslexia, and attention-deficit/hyperactivity disorder (ADHD) should be regarded as naturally occurring cognitive variations with distinctive strengths that have contributed to the evolution of technology and culture rather than mere checklists of deficits and dysfunctions” (16).
If we believe and accept that, it must flip our model of special education on its head. What if we could build systems and schools that would make it unnecessary to label kids with these “disabilities”? What if instead, we understood that all people have unique neuroprofiles and we built schools that respected and responded to that? The role of the “special educator” and all teachers would be to help individuals uncover and understand their profile, focusing on creating opportunities to build on their strengths and interests first. Then add interventions to address their challenges. How would that reframe how we think about kids and education? Places like iSchool, High Tech High, and now the Khan Lab School, not to mention well-run Montessori schools, offer us examples of what this could look like. This is personalized learning that could allow us to finally break down labels and meet kids where they are. All kids would have an Individualized Learning Plan that mapped their learning journey. In that way, in 1930’s Vienna, Asperger was way ahead of his time. We have a lot to learn.
Additional Resources mentioned in the book:
Making Peace with Autism: One Family’s Story of Struggle, Discovery, and Unexpected Gifts by Susan Senator
Somebody, Somewhere: Breaking Free of Autism by Donna Williams
Loud Hands: Autistic People Speaking, a collection of poems
Neurodiversity in the Classroom by Thomas Armstrong
AUTISM NETWORK INTERNATIONAL: THE DEVELOPMENT OF A COMMUNITY AND ITS CULTURE
Autscape – Conference by and for individuals with Autism
Thinking Person’s Guide to Autism
Universal Design for Learning