It is almost a cliché, at this point, that when questions arise about the increase in autism diagnostic rates, or increase in visibility of autism in public life and schools, for laypeople to protest, “We didn’t use to see this many autistic people 30 years ago!” or “when I was a kid” or “when I started teaching school…”
Particularly in the wake of Secretary of Health and Human Services Robert F. Kennedy, Jr. repeatedly elevating this fallacy to renewed public prominence, there has come to be a widespread tendency to respond that before a certain point, “Autistic people were all hidden away in institutions.” Sometimes our tendency to be segregated in special ed classrooms or sheltered workshops is noted. I have even seen variants of “autistic kids were all just thrown into institutions and chained to the wall.”
In ways, both of these groups are right: There did used to be fewer autistic kids in general education classrooms, and autistic people were, broadly speaking, probably less visible to the general public.
In ways, they’re both wrong.
Many advocates and experts in this subject before me have addressed the reasons why the epidemic theory of autism is mistaken. General lack of awareness, narrower diagnostic criteria (and capricious application of those criteria), professional bias against diagnosing girls, children of color, adults, etc., diagnostic substitution and overshadowing—as well as institutionalization and educational discrimination—have all contributed to autistic people having been much less in the public or professional line of sight than we are now.
But I want to explore why the standpoint that autism isn’t actually more common now but that autistic people used to all just be thrown into institutions or hidden from public view is also an assumption we should question.
In the first place, I think it’s worth second-guessing whether it’s mathematically plausible that this was true.
In the 1980s, the reported diagnostic rate of autism was around 4 in 10,000. That number has recently been revised to 1 in 31. If it’s true that the actual prevalence of autism hasn’t substantially increased, that means that for every autistic child diagnosed in the early 1980s, around 76 were not.
If we were simply failing to diagnose the overwhelming majority of autistic people, then it is also not likely that we were all being institutionalized.
And while it is absolutely imperative to remember that too many of us were, including for reasons other than a diagnosis of autism such as actual or supposed intellectual disability or mental illness, my strong suspicion is that we were not institutionalizing over 3% of the population.
Even diagnosed autistic people were not uniformly institutionalized. Famously at this point, both Temple Grandin and Daryl Hannah’s parents were recommended to institutionalize their children by professionals but refused. Others were institutionalized intermittently, but did not simply disappear into the system. Donald Triplett, the first person to be diagnosed with autism, was briefly institutionalized as a child, but was removed by his parents to a foster family and ultimately lived a long life integrated into his community.
There was a point in time when there were eleven children in the United States diagnosed with autism. Were all the rest of the nation’s undiagnosed autistic kids being institutionalized?
If not, what did their lives look like?
I think that’s worth investigating, but we can never know the answers if we’ve already decided the worst.
Secondly, an assertion about an interminable, unbroken past in which autistic people were inescapably institutionalized portrays institutions and institutionalization as more eternal and inevitable than they in fact were. The institutions where, supposedly, most or all autistic people used to end up, have not always existed, but emerged from specific schools of thought in politics and medicine in the mid-to-late 19th century. They do not represent the way things always were in this country up until Willowbrook closed and public opinion started turning against large state institutions in the 1980s. There have been huge swaths of time in which this isn’t what happened to autistic people by default, simply because these places did not exist on a widespread basis.
Furthermore, accepting this as a foregone conclusion is erasing of the truth and complexity of our lives and histories, our presence in society, and what did happen to us for complex and interrelated sets of reasons. For the autistic community, which has faced such severe and genuine hardship, it can seem obvious that to take our community’s history seriously means repeating the common knowledge that the primary reason autistic kids weren’t more recognized in school 30 years ago was because we were all institutionalized.
But in this case, insistence on a single story risks obscuring authentic knowledge of the true variety of lives we’ve lived and reasons why autistic people are seen as having been less present in schools and society 30 years ago—from institutionalization and segregated special ed classrooms, to simple lack of awareness, diagnostic disparity, misdiagnosis and diagnostic overshadowing, students who were considered behavior problems but not disabled, who dropped out, switched schools often, were homeschooled or unschooled … or who just made it through despite being rampantly misunderstood and unsupported, and who as adults expended every scrap of their resourcefulness and creativity just to survive.
Finally, the claim that before some point in the 1980s or 1990s, autistic people were unseen and absent from school and society, is not only to erase the complicated truth of our own histories, but to reinforce some of the very misperceptions we claim to oppose.
It carries an implication that those of us who did have lives in our communities, or who were sitting in school, weren’t really autistic. That perhaps we were the “very high functioning,” or “just quirky,” but that noticeably disabled autistic people would’ve been institutionalized. And it’s not only not true, it inadvertently reinforces assertions of autism epidemic proponents who insist that anyone truly autistic would necessarily be readily identifiable as such.
The truth is that very often we were seen, our challenges were noticed, but most people didn’t know how to understand what they were seeing, and thus substituted other explanations. Mel Baggs wrote about this experience in “On growing up with strange sensory reactions, and the difference between passing and being passed off.”
“What happened was people saw every single thing I did and then since they didn’t know about autism they formed other explanations. So I was crazy, or on drugs, or wanted attention…or any explanation at all they could come up with. Sometimes several at once.”
Autistic Science Person has written about how for many autistic people, repeated misdiagnosis is the default path to an accurate autism diagnosis. In some cases, those misdiagnoses themselves resulted in institutionalization, and in others, they did not. For those of us among this faction, our lives didn’t start when we were finally identified as autistic. Sir Anthony Hopkins was 70. He’d had an entire, decades-long, high-profile acting career, much of it occurring during the time when we now commonly assert that autistic people were all in institutions.
“Books, websites, and the popular media often portray autism as a condition of childhood, rendering autistic adults nearly invisible,” wrote one author in the anthology We’ve Been Here All Along: Autistics Over 35 Speak Out in Poetry and Prose, published in 2012. “And when the concomitant message is that autism was nearly unknown in past generations, those of us who grew up undiagnosed can feel doubly marginalized.”
But the truth is that autistic people have always been present in the world. In schools, in every profession, in every element of society.
We have been scientists and inventors and writers, artists, lawyers, doctors, politicians, farmers, parents and grandparents, architects, actors and doctors, and weirdos and loners. We have been homeless and imprisoned. It is possible to see ourselves in so many figures of history, literature, and art, because we did live in the world. We can’t both accept widespread speculation that people like Darwin and Einstein were probably autistic, see ourselves in Mr. Darcy and Bartleby the Scrivener, and also that all autistic people at the time were institutionalized, killed, or abandoned as changelings.
These things happened to us, and so did a wide variety of other outcomes. To declare otherwise erases so much struggle, so much effort, creativity, resourcefulness, culture, and accomplishment. It erases our friendships and our families who didn’t institutionalize their autistic children, and the very fact of families in which autism is so commonplace as to be considered unremarkable. Of parents who were identified as autistic only once their children were. Many of us can point to relatives or ancestors who, knowing what we know now, would almost certainly be identified as autistic today. They lived in the world. They married and had families and got by.
It promotes invisibility and ignorance about our lives, not information or enlightenment, to say that we weren’t living those lives when we were, and it’s trivializing of the lives of people who were institutionalized to say that’s just what happened to everyone, when it wasn’t. It isolates today’s autistic children and young adults and their families from knowledge of how we did live and move through the world, and of possibilities for their own lives they may not have imagined. It risks cutting off autistic young adults from mentoring and professional development, if they mistakenly assume that there simply have not been autistic people in their chosen career fields with valuable personal experience to share.
It still serves as an excuse for not seeing the ways we have always been part of humanity and of society, for not knowing far more varied and complicated truths about what’s happened to us, the kinds of lives we’ve led, and why.
I think we owe it to our community, and to autistic people who came before us, to do better.
