Asperger's Syndrome
An Interview with Neurodiversity Originator Judy Singer
A new framework to promote honest discussion about impairment.
Posted June 26, 2023 Reviewed by Gary Drevitch
In 1998, Australian sociologist Judy Singer coined the term “neurodiversity” in a thesis documenting the emergence of a new “disability and social movement” led by and for mildly affected autistic individuals – such as her own mother, as well as her daughter, who had been diagnosed with Asperger’s syndrome. Singer modeled her new term after the word “biodiversity,” which offered a compelling analogy: “Why not propose that just as biodiversity is essential to ecosystem stability, so neurodiversity may be essential for cultural stability?” she wrote.
Singer’s proposal collided with the nascent Autism Self-Advocacy Movement – which had launched five years earlier when Jim Sinclair famously scolded parents not to “mourn” for their autistic kids – to create a cultural phenomenon that today informs every aspect of disability philosophy, policy, and practice.
The problem? Neurodiversity has morphed into what Singer calls a “Pollyanna/Pangloss” ideology that bears little resemblance to the movement she launched more than a quarter-century ago. Afraid to say anything for years because of the aggressive trolling critics typically receive on social media, Singer finally decided that she needs to speak out. “I could put it [neurodiversity] out there, but I couldn’t control it,” she told me in a recent interview.
What Singer Envisioned
Singer’s personal history has always informed her work. Having spent most of her life trying to understand her mother’s “singular oddness, her unusual body posture, her harsh unregulated voice, her egocentricity, her inability to sense what others were feeling, or how their minds worked,” the emergence of some of these same traits in her own daughter was like the proverbial light bulb going off over her head, that “there was something hereditary in the family.” By the time Singer’s daughter was 10, she had been diagnosed with Asperger’s.
Singer spent years supporting this population and their families. She started a group for adult children of parents with Asperger’s and later organized a social club for teens with the disorder. She felt deeply for the “teasing, bullying, and discrimination in education and the workplace” such individuals faced, and imagined a world in which they would not be “expected to perform in ways for which they are simply not ‘wired.’” For Singer, neurodiversity was another identity, like gender or race, with potentially enormous impact that could best be understood through an intersectionality framework.
Neurodiversity Today
“I was very clear in my thesis that I was only talking about Asperger’s,” Singer told me. And in fact she couldn’t have been more explicit: In an early section entitled “Notes on language,” she wrote, “I want to make it clear that when I used the term ‘autistic,’ I am referring only to people with what is called High-Functioning Autism (HFA) or Asperger’s Syndrome (AS), that is, people who have normal to high ‘intelligence.’” Singer made this distinction because it was obvious to her that the challenges faced by the “brainy but socially inept nerds” at the center of her thesis were both qualitatively and quantitatively different from the profound impairments that characterized classic autism. “What is now called autism isn’t a unitary condition, and I only know Asperger’s – I can’t speak for severe autism.”
But if you look on social media, you will find that most neurodiversity advocates reject nearly every part of this claim – that autism isn’t a unitary condition, that lives at the two ends of the spectrum are vastly different, that those who are mildly affected shouldn’t speak for the severely impacted. In 2017, John Marble, founder of the San Francisco-based advocacy organization Pivot Diversity, tweeted “There Is No Such Thing as Severe Autism,” a claim that was amplified on other platforms such as Reddit and Instagram. More recently, neurodiversity activists have targeted researchers and clinicians in language guides frankly prohibiting the use of “ableist” and “harmful” descriptors such as “severe” and “high functioning” altogether. And over 20 neurodiversity organizations signed an open letter to the Lancet Commission objecting to its introduction of the term “profound autism” to describe autistics who also have minimal language, IQs below 50, and who require round-the-clock supervision – a carve-out that, if adopted by the American Psychiatric Association, would reverse DSM-5’s lumping of Asperger’s, Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS) and other variants into the singular Autism Spectrum Disorder. Such activism, according to its champions, “specifically includes and advocates for those who are unable to do so themselves.”
Neurorealism
Twenty-five years after she introduced the revolutionary term “neurodiversity,” Singer has a new word to debut: “NeuroRealism.”
“When I tried to promote it recently, I got an avalanche of opposition,” she said. “I understand because politically, the term ‘realism’ has been hijacked by the political right. But it shouldn’t be. You have to be realistic – meaning evidence-based – to survive in this world. If you can’t swim and you go in the ocean, you’re going to drown. That’s realism. NeuroRealism is a counter to Pollyanna/Pangloss neurodiversity. It demands that we aim to meet the actual needs of everyone, as they experience them, whether they consider themselves disabled or different.”
As a parent who is constantly being told by neurodiversity advocates that my severely autistic son really can live independently, work a competitive, minimum-wage job, or even write poetry, NeuroRealism sounds like an idea that is way overdue. We are not doing anyone any favors by obscuring devastating impairments – that may, according to recent estimates by the CDC, affect almost 30 percent of the autistic population – behind the celebratory façade of identity politics. “Autism is trendy now,” Singer reflected, with some surprise.
But I was even more surprised that Singer reached out to me in the first place, and that so many of her beliefs aligned with mine. “I’m on your side,” she confirmed, in closing. And it’s not because she has abandoned the philosophy she created. It’s because the philosophy she created has been twisted.
Most surprising of all, for me, was how my conversation with Singer cemented my growing conviction that, despite much media attention focused recently on the so-called “Autism Wars,” there is a growing number of people – maybe even a majority – on both sides of the traditional fault lines in the community who are genuinely interested in collaboration. Who believe that autistic adults, families, researchers, clinicians, and other providers are all important stakeholders who deserve to be heard – who believe that this is, in fact, the only way to advance the goals of the entire community. Who recognize that those goals will look very different at the opposite ends of the spectrum. Who believe, in other words, in NeuroRealism. At 72, Judy Singer isn’t done transforming our ideas of autism yet.