1 in 68. What does that number mean to you?
While you consider that I’ll share some of what it means to me.
It says we are a big part of the population – bigger than anyone previously suspected. The latest numbers make us more numerous than Japanese immigrants, American Jews, or Native Americans, to give just three examples. Like those groups, we have members who are successful and others who are not. Like those groups, we have long been on the receiving end of marginalization and discrimination. Now we are standing up for our rights.
Our numbers rose steadily these past twenty years as we’ve refined the definition of autism. Whether through psychological testing or biomarker profiling, the identified group keeps getting bigger. We realize there is no one autism; rather there are many pathways to a common set of behaviors we call the autism spectrum (ASD). In America, the DSM5 consolidation of Asperger’s, PDD NOS and traditional autism under the one ASD umbrella has made that trend even more obvious.
Critics ask if we are over-diagnosing, but I think it’s more accurate to say that we recognize more people, as clinicians learn to see behaviors that are markers for autism. At the same time, scientists who work to develop biological tests – such as blood assays of DNA, recognition of patterns in the brain via MRI –bring in larger and larger groups of people, and the findings of the experimental tests are backed up by gold standards like ADOS
The CDC prevalence numbers are based on studies of children, which make some people assume we have an epidemic in kids. What they may not realize is that studies in adults find the same rates of autism when the newer evaluation techniques and criteria are applied. That adds to a growing body of evidence that autism has been with us forever, unseen.
We used to think most autistic people were intellectually disabled. That narrow view was based on a limited understanding of what autism really is. As our knowledge grows we recognize more people whose intelligence is in the normal range, and some whose IQ is exceptional. The more autistics we identify, the closer our community’s distribution of intelligence comes to that of the general population.
One thing remains troublingly different - we have more far more medical and mental health challenges than the rest of the population. Some of us are sick from birth. Others can’t speak freely, or understand others. Adults seem to age faster, and develop other medical complications later life. Some of us are profoundly disabled. Then there are depression, anxiety, and the many other psychiatric challenges.
We have one more thing in common: all of us are disadvantaged when dealing with neurotypical society; the majority of humanity. Interestingly, the exact same thing can be said of other minority groups in America.
The biggest difference between us and the other minorities is that we have been invisible until quite recently. We don’t look different, and prior to the advent of psychological testing, we had no way to know who we were. We may have looked at others and seen kindred spirits but lacking knowledge of autism we never knew it ran deeper than that.
Our identity has come at a high cost. For many, the autism label came as a badge of shame. Autism tends to isolate us socially, and most adults my age were not even recognized as autistic until much later in life. Even when we were, the diagnosis was used to describe our problem, and not as a label for our identity.
That’s all changing now.
As we form a community identity we are beginning to take control of our destiny. Some of us are assertive; others are angry. Some are meek but that’s changing too. We’re speaking out. We’re getting a better handle on the broad range of supports and services we need to live in this society. We’re finally recognizing the needs of adults and older autistics. More and more, we’re speaking up and expressing our needs in education, medicine, workplace accommodation, and public policy.
We’re also realizing something really interesting now that we’re seeing the true size of our population – we’re realizing that a lot of our presumed disability is a construct of modern society.
We see that by looking at history, and asking what the autistic people did 100, 500, or 2,000 years ago. When we were thought to be rare it was easy to dismiss us. Now, with the realization that every few dozen households have probably always contained autistic family members, and that autism often passes from father to son to grandson, we have to rethink that question. As common as autism is – and has been – we ask how it could have remained invisible so long.
The inescapable answer is that we blended in. We grew up and went to work, just like everyone else. The social differences that cripple us today were less disabling in earlier societies where people lived and worked in the same small groups their whole lives. The evidence of autistic thought and expression in historical writing shows that we no only "fit in," some of us were leading thinkers. For example, much of Sun Tzu's The Art of War is really a codification of Asperger thought for military success. There's more evidence in the writing of every major religion,and many of the great philosopers.
One could almost say there has been a "hidden hand" of autistic thinking shaping religious and logical writing of the past few millenia. That's one of the things I have been studying here at William & Mary.
Autistic behavior was recognized, but autism as a distinct condition was never described prior to the 20th century because we fit acceptably with the social structures of the time. Our ancestors surely had all the differences, eccentricities, gifts, and challenges today’s autistics have, but they were accepted as natural variation in humanity.
In modern times, we asked: What’s wrong with autistics? We don’t fit in. Now, we are beginning to see the real question: What’s gone wrong with society, that we are now excluded?
There are many answers. Learning by doing in the field has been replaced by abstract book-based education in an artificial environment. Farm work has been replaced by industry. Work in small groups has been replaced by big business. And there’s more reliance on new cognitive skills. Today’s autistics are asked to do things humans never did before. We’re not well adapted to some of them. The artificial environments where we’re asked to work overload our senses.
Until now, all of this has been our problem. It was us that had to change, to fit in. Now that we realize we did fit in – right up to the last century – we ask society to change and welcome us back. After all, the other 98% needs us as much as we need them. We're the ones who brought you calculus, Pokemon, and much of the art, technology, and creative fire that drives the world forward. Through it all, we are people together.
Rather than wait for “someone else” to help us, we are taking charge of our destiny. Autistics – instead of outside observers – are starting to call out for what we want and need. Those of us who speak are advocating for those less able. Parents and professionals still have a role, but it's time for us Autistics to take center stage. More of us are moving into leadership positions in the organizations that support us.
A new day is dawning for our community.
John Elder Robison is an autistic adult and advocate for people with neurological differences. He's the author of Look Me in the Eye, Be Different, Raising Cubby, and the forthcoming Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept. of Health and Human Services. He's co-founder of the TCS Auto Program school and Neurodiversity Scholar in Residence at the College of William & Mary. The opinions expressed here are his own.