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Brandy Schillace is a Cleveland-based historian and author of non-fiction and fiction books, including, most recently, The Intermediaries: A Weimar Story and The Dead Come To Stay.
I still remember my kindergarten Christmas pageant.
It was 1982, and the faculty had us dressed up in holiday clothes to perform a stirring rendition of Jingle Bells. Early sundown meant the gymnasium was dark. To the children standing on tiered mini bleachers, it looked like a gray-black sea of vague movement. Strangers were out there; there were parents, too, supposedly, but you couldn’t see them. The kindergartners, on the other hand, were lit up like actual Christmas trees – visible in high definition.
The music began and the teacher went through her paces, attempting to conduct the wriggling, easily distracted mass. It went surprisingly well – almost.
I fidgeted a lot more than most. I would look up, wide-eyed, as though something were in the rafters, then down to my left, as though whispering to the girl next to me (who was ignoring me). I wiggled my fingers and made little fists and puffed my cheeks out. In doing all that, I forgot to sing.
And in the audience, people muttered to each other, “What is wrong with that one?” – forgetful that they were within earshot of my embarrassed mother.
When we kindergartners were finished, I went off with my classmates to partake in a table of sweet treats as the rest of the pageant continued. I didn’t know anything was wrong until I saw my mother. With her fingers wrapped around my wrist to steer me through the parking lot, she asked me, in a voice pinched with disappointment: “Why can’t you be like the other kids? Why do you have to embarrass me? Everyone saw you. They think you aren’t normal.”
Everyone has their share of formative moments; this is one of mine. I still feel the sharp needle of regret, the pain of realizing I had once more missed the mark. It inaugurated a lifetime of trying to guess what was expected of me before I had a chance to let someone down, the start of 40-odd years of internalizing the refrain: “Don’t be weird in public.” It didn’t occur to me, that night in December, that there were social rules to school shows, or that I was being judged, or that there was a difference between the giggly behaviour we exhibited during practice and the apparently serious nighttime affair. I only knew that I was nervous, a bit confused by everyone else’s behaviour, and inclined to “stim” – the use of self-stimulating, repetitious behaviour.
I am autistic, but I didn’t know that back then. At the time, I only knew I was in trouble. Again.
I have not told this story before – partly because it is still painful to me, but also because I know many will judge my well-meaning mother. But this was a time when the world barely recognized autism in women and girls, and only a decade or so from the “refrigerator mother” psychoanalysis championed by Austrian psychiatrist Leo Kanner, who blamed women for turning their children autistic – claiming that a “maternal lack of genuine warmth” created children who withdrew and didn’t understand social conventions. The idea became entrenched in the 1950s and 1960s, and many autistic children were automatically institutionalized in the U.S. and Britain.
I was born a decade and a half later, after twin studies began to shake Dr. Kanner’s ideas. But the shadow cast by his work was long. To my mother, admitting that I was autistic meant attacking herself – or endangering me.
Yes, I had struggles: I could not bear to be held, even as an infant, which developed into a deep dislike for touch in general. I was hyperlexic, meaning I learned to speak by eight months and to read early, but I didn’t trust or understand other children. Socializing me was a nightmare – I bit, I hit – but my mother was determined to make it so that I would not stand out. I would learn to mask. I would look normal. I had to – or else.
Perhaps it was that early experience on stage, but I came to think of everything in terms of performance. Life was a play, except I hadn’t been told which one, didn’t have the lines, and had to guess from clues in real time. Neurodivergent people have cognitive processes that are sometimes referred to as “island-hopping,” or “bottom-up” thinking: going from one idea to the next via links of association. It’s getting from A to B via C, D, E, F, G (and sometimes all the way to Z). We do not think in straight lines; we don’t process things via the hub-and-spoke model. That doesn’t mean I won’t get to the point eventually; in fact, I’ve learned to speed up the process and think laterally along the way. But it does mean I spent my young life constantly hunting for clues to expected behaviour, and then faking it the best I could. As a result, I’m now better at reading people than your average neurotypical person, simply because I spend all my time studying human interaction, and I learned to write a story around myself and then hide within it. For years, it made me feel like a secret detective, ferreting out what the world wanted, then writing a plot and character to fit.
But in recent decades, the world began to change. As a senator, Barack Obama spoke out in support of autism rights, and as president, he signed the Autism CARES Act into law. Increasingly, autistic characters were appearing in television and movies, though rarely was the diagnosis openly stated. Characters in mystery fiction were reassessed as possibly neurodivergent, from Sherlock Holmes to Hercule Poirot to Nero Wolfe. And in 2024, then-president Joe Biden released a proclamation for World Autism Acceptance Day, championing the dignity and rights of the 5.4 million American adults (and one in 36 children) diagnosed with autism. “Their talents and potential are too often misunderstood or overlooked,” he declared, adding that, together, “we can work to end these disparities and ensure they have an equal opportunity to reach their dreams.”
There was more understanding of autism and its nuances than ever before. It felt like I didn’t have to wear that mask and perform. It was a joy to think that today’s young people with autism wouldn’t have to go through what I did. I even felt that enough battles had been won that it was safe for me to “come out” as autistic.
In 2022, I drafted a mystery novel with an autistic book editor as the lead, encoding in her what it was like to be me, a person with autism who had struggled against gaslighting and the spectre of failure all her life. I also wanted to honestly depict a character who claimed their diagnosis – someone who could show what it was like to be open and accepting of yourself as an autistic person. The Framed Women of Ardemore House was published last year, and I was surprised by how popular it quickly became. I received notes from readers saying they were finally seeing someone who was like them, and several from parents saying they understood their children for the first time.
One of those parents was my mother. She had struggled to accept my diagnosis and to free herself from implicit blame. But through my fiction, she was permitted to see the world from the inside of an autistic mind. It isn’t a burden I carry; it’s who I am, a part of how I see the world. My character Jo Jones wouldn’t change that about herself, and neither would I. “I didn’t know what it was like before,” she told me. Building that bridge was healing for us both.
There is something powerful in the stories we tell about ourselves. For years, autistic people (and women in particular) didn’t get to be the authors of their own stories; instead, they were talked at, about, and down to. Unfortunately, by the time my book’s sequel The Dead Come To Stay arrived this past fall, the world had begun to revert, with Donald Trump’s administration rolling back much of the progress we’d made.
This past April, Health and Human Services Secretary Robert F. Kennedy, Jr. held a news conference about U.S. Centers for Disease Control and Prevention (CDC) findings that suggested that the reason autism diagnoses were on the rise had to do with destigmatization – that people were feeling safe enough to stop hiding their autism, and parents were not necessarily forcing their children to mask or to lie. RFK Jr. argued against all of this – not by bringing his own evidence, but by renewing the very stigma we’ve fought so hard to undo.
First, he claimed that external influences cause autism, with his favourite targets being life-saving vaccines, which (nonfraudulent) studies have consistently shown do not cause autism. But he also put women in the crosshairs once again by claiming that Tylenol use during pregnancy causes autism. The President then popularized the baseless claim in September, blaming mothers and telling women to “tough it out” when they are in pain.
RFK Jr. has since added that children with autism “are kids who will never pay taxes, they’ll never hold a job, they’ll never play baseball, they’ll never write a poem, they’ll never go on a date, many of them will never use a toilet unassisted.” These attacks are doubly brutal in that to refute them, we would have to equate human value with economic gain, pro-creative potential, and other ableist benchmarks. And last week, the CDC quietly revised its website to say that “the claim ‘vaccines do not cause autism’ is not an evidence-based claim because studies have not ruled out the possibility that infant vaccines cause autism.” This change, which defies all existing studies, came at the personal request of RFK Jr.
Opinion: The truth of autism will continue to be found in science, not myth
For the second time in my life, I find myself living in a country that devalues the lives of autistic people and backs up claims with bad science. This time, however, it feels even more dangerous.
When I was a child, acceptance around autism struggled to overcome Dr. Kanner’s deeply biased psychoanalysis. But the language being deployed by this administration echoes a different Austrian physician – and a more lethal type of stigma. In 1940, Johann Friedrich Karl Asperger took a position in Vienna diagnosing “hereditary diseases” for the Nazi eugenics program. He was responsible for sending children he considered irredeemable to Spiegelgrund, a clinic that experimented upon them, abused them, and starved them to death – but he was also responsible for many more autistic people being forcibly sterilized. The eugenics policies under the Nazis used selective breeding strategies borrowed from agriculture in an attempt to create so-called “good genes.” Disabilities would not be tolerated, and that meant screening for everything from blindness and deafness to various mental health conditions, physical disability and, yes, autism. These were considered “lives not worth living.” The slope from there to the murder of disabled, homosexual, Jewish, and other racially diverse people was short and steep.
It is not hyperbolic to be paranoid about the eugenic echoes in the Trump administration‘s words and actions. Trump officials have argued that autism is undesirable, and thus those who have it are, as well. Mr. Trump himself has even called it a “tremendous horror show.” RFK Jr., meanwhile, has launched an effort to create a database of Americans with autism, including by pulling from private medical records, allegedly for the purpose of study. Mr. Trump has also signed an executive order to make it easier to involuntarily institutionalize people with mental health disabilities dealing with homelessness, while cutting federal programs devoted to helping Americans, including those with autism, access disability benefits.
I think a lot about five-year-old me, standing on that stage and not knowing the lines. It was difficult, growing up – but at least I was allowed to grow up. I’ve spent my working and writing life fighting for diversity and inclusivity, but as I have watched the swift deterioration of progress, I’ve had time to wonder if I should put my mask back on. I could decide to keep my head low and, as my mother taught me, not be weird in public.
But I won’t be pretending any more. It’s a frightening time to be autistic in the United States, but I am no longer afraid to be seen as what I am. And I hope, by being open, I might help protect some other little girl on life’s terrifying stage.