Judy Singer is thousands of kilometers away from her home in Australia on a two-week tour of the UK, which includes an interview at Cambridge University and receiving an honorary scholarship from Birkbeck University in London.
Shortly after we meet, she will tour the city and then travel to meet her relatives in Hungary.
The itinerary sounds very demanding, but her fatigue is combined with the satisfaction of being belatedly recognized for her innovative work.
We meet in a cafe in central London where for almost three hours she takes me through her life story, which includes the aftermath of the Holocaust, life in communist Eastern Europe, her family's migration to Australia, and a life that has mixed academic life and activism with a lot of struggle and hardship. But what we're talking about the most is neurodiversity, a concept she quietly introduced to the world in 1997.
I started thinking about it when I was quite young; I thought mom came from a place where the rules were much simpler. She didn't understand our rules and would be extremely frustrated and upset
Almost 30 years after she coined the term in undergraduate work, it is now almost universally used and understood: an idea that beautifully captures the clear fact that autism and a host of other conditions—ADHD, dyspraxia, dyslexia, and more—are part of an endless the different ways in which the human brain is wired. In doing so, it accomplishes something even more powerful: an implicit demand for liberation and acceptance for people who are, to use a related word, neurodivergent.
"I knew what I was doing," she tells me. “'Neuro' was a reference to the rise of neuroscience. 'Diversity' is a political term; it arose out of the black American civil rights movement. "Biodiversity" is also a political term. The word "neurodiversity" describes all of humanity. But the neurodiversity movement is a political movement for people who want their human rights.”
Back in the XNUMXs, Singer could feel that movement brewing in some of the groups that emerged in the early days of the Internet. What people talked about matched her own history and experiences—her apparently neurodivergent mother, Singer's autistic daughter, and a range of traits she recognized in herself. To some extent, what people talked about online centered on their own psychology, but it was also about society at large: the ways in which social organizations, institutions, and attitudes have made many people's lives nearly impossible, and how these things can be to change.
Singer was well aware of the potential importance of what she was trying to describe; by naming him, she hoped she could somehow accelerate his growth into something unstoppable. "I thought, 'We need an umbrella term for the movement.' And I also realized that this would be the last great identity politics movement to come out of the 20th century.”
Then comes an unexpected reference point. "Part of it came to mind when I saw that movie Brilliant," she says. “There was a character... what was his name? Eugene. Nerd. It was considered perfectly fine for him to be bullied and pushed and all that, and I thought, 'This is not right. This is a movement that needs to happen.”
She pauses. “I thought, 'We're not going to play fair anymore' - in other words, we're going to change this. And we did.”
Singer, who is 72, was born in Hungary to a Jewish mother who survived the Holocaust - transported to Auschwitz but saved from death when she was forced to work in a German aircraft factory. In 1956, she, her husband, and their four-year-old daughter fled their native country as a result of the failed Hungarian revolution and subsequent Soviet retaliation. They settled in the Australian city of Brisbane - where, as she grew up, Singer began to notice her mother's seemingly strange behavior.
“It's like she came from another planet or another dimension,” she says. “I started thinking about it when I was quite young; I thought it came from somewhere where the rules were much simpler. She didn't understand our rules and would be extremely frustrated and upset. I think to some extent I became my mother's social interpreter, because her naivety got her into trouble."
A worried expression appeared on her face. “She kept having breakdowns. She would talk to herself. But what she wanted to talk about was her village (in Hungary) and the relationships between all the people - all their life stories, where they worked and where they lived, but without really showing any understanding of the emotional side of it. She would always commit to it if you talked to her.”
Singer says she's still not sure if her mother's behavior was a result of autism, the trauma of the Holocaust, or both. But when she became a parent herself - in 1987 - she soon began to think deeply about the complexity of human psychology, and the traits and tendencies that people inherit from their parents.
Her newborn daughter, says Singer, "looked at everything around her, but not into my eyes." When she started school and Singer watched her on the playground, “all the kids were playing together, and she was walking up and down and kicking leaves from one end of the playground to the other. I knew there was something, but I learned not to say anything."
What confused her, she says, was that autism was usually thought of as a clearly differentiated condition, mostly associated with people who are either non-verbal or have very limited speech, and seem somehow cut off from other individuals. Her daughter, in contrast, was "the most loving and pleasant child you could ever meet." But when she finally spoke to people at the Autism Society of Australia, she got her first glimpse of new thinking being pioneered by British psychologist Lorna Wing - about autism as a spectrum condition that has become virtually invisible in humanity as a whole, and the identification of a subcategory of people with autism which Wing named after the Austrian psychologist Hans Asperger.
"They said, 'Well, there's a new thing called Asperger's syndrome,'" Singer recalls. “And we actually got some support.” Moreover, after her daughter was diagnosed with Asperger's syndrome at the age of nine, Singer began to recognize certain traits in herself. “Difficulty making eye contact. Confidence. In fact, I asked an old friend from university the other day, "Do you think people thought I was eccentric?" She said, “Oh, yes.” I would sit next to someone and talk to people without looking at them. I was a nerd... And I have dyspraxia. I'm disorganized.”
Singer worked for a while in the embryonic IT industry. Then, in her early forties, she entered part-time undergraduate studies at the University of Technology Sydney, where she studied sociology and disability studies. The sudden access to the internet meant he could now talk about autism using newly established online mailing lists, including one called Independent Living on the Autism Spectrum, or InLv. It was there that Singer found the American writer and journalist Harvey Bloom - who, in an article written for the New York Times, described the defining idea of InLv as "neurological pluralism".
He and Singer then began talking regularly on the phone. To quote from the definitive history of autism "Neurotribes", by the American writer Steve Silberman, "it was in those conversations with Bloom that she came up with the term neurodiversity".
Meanwhile, Singer has decided to write a thesis focusing on the online communities she is now a part of, and her sense that they fit into a new social movement, comparable to those focused on feminism and gay rights. In keeping with convention, she began looking for academic experts: high-ranking experts on autism and the discourse around it who could help her. But she couldn't find anyone.
“And then I had that moment: 'Oh my God, it's me. Someone has to do it, and that's why I'm here. To write about it.' And also, we needed movement. So, that's what I wrote my thesis about."
The title was “Odd People In” and it had two subtitles: Birthing Community Among People on the Autism Spectrum and Personal Exploration of a New Social Movement Based on Neurodiversity. Some of it was autobiographical—about her mother (“I was fascinated and horrified by her singular strangeness,” Singer wrote), her daughter, and herself. Most others described a growing movement that insisted that real people with autism be heard and respected. Singer was clear that her focus was on what were then known as "high-functioning," many of whom were diagnosed with Asperger's—people who could advocate for themselves, which inevitably left out many people with autism. But that didn't diminish the strength of her arguments, or the sense that all neurodivergent people could benefit if the movement she wrote about made real progress.
The text, which was soon included in the British Open University's Disability Discourse anthology, is now available as an e-book called Neurodiversity: The Birth of an Idea. In retrospect, almost everything in the book seems incredibly prescient. “Connected to computers and the Internet,” Singer wrote, “autistics began to develop a new kind of identity. They oppose those they call 'neurotypical' or NT, a term they coined to sideline the word 'normal' with all its connotations. Autistics begin to see themselves as a kind of neurological 'other' who existed and was oppressed by the dominant neurological type, the NT, whose hegemony has so far been neither noticed nor challenged.”
This was a new vision of what it means to be autistic and how societies need to change. It slowly began to make its way into the wider world.
In September 1998, Harvey Blum published a short article in The Atlantic magazine, which contained the first mention of neurodiversity in the media. Then, Singer says, “I forgot about that. Nobody was interested. I had to get on with my life, I had to earn a living. I was a single parent, I lived in public housing…”
She sighs, but then the conversation brightens. In 2013, there was a belated turning point. That year marked the 20th birthday of Wired magazine, which published a special issue focusing on the most influential ideas of the past two decades. One of the writers involved was Steve Silberman, who contributed a piece titled “Neurodiversity Rewires Conventional Thinking About Brains,” which began by crediting Singer with coming up with the idea.
"Someone called me - one of my friends," she says. "He says, 'Do you know you were just quoted in Wired magazine?' I thought, 'Oh wow.' Then I contacted Steve and said, 'That's me.' He said, 'I've been looking for you.' And that was it.” Silberman has since honored Singer by not only telling her story in Neurotribes—which was a bestseller—but also giving glowing credit to her work: “Few people can claim to have coined a term that changed the world for the better. Judy Singer can.”
Singer then watched as neurodiversity began to grow, including in Australia. "People would call me and say, 'Neurodiversity is coming up again.' It was on ABC news at home. Someone said: 'You are mentioned as the Australian sociologist who came up with this idea.' I thought: Great. So I called the ABC and said, 'I live near you - I could come over if you want to talk to me.' And nothing. I know you're meant to persevere if you want to persevere, but I have other things going on in my life.”
This story brings the conversation back to something Singer feels deeply: the frustration of being largely unrecognized in her own country. "Australia hurts," she says. "And the fact that I don't have close people to discuss ideas with because I have to wait until someone wakes up in London or the United States." No collective things happen at home. Everything has to happen on Zoom, and it's exhausting.”
We have been talking for over two hours now, but the conversation continues. We talk about her discomfort with the removal of Asperger syndrome from international diagnostic manuals, the lack of women in the tech industry and more. And then he addresses one of his frustrations with today's understanding of what neurodiversity means: the fact that it's sometimes used as a corporate buzzword, denoting the need to include different kinds of people in the workforce. This, he says, sounds reasonable, but misses many key points.
“You'll see on my blog that one of my subheadings goes something like, “I'm not here to make capitalism more efficient; I'm here to make it more humane,' she says. "Also, I say that there is a right to work and there is a right not to work. The bottom line for a better world for neurodivergent people is a universal basic income. And more investment in social housing, and without punitive welfare systems, which often boil down to forcing the nearest square peg into the nearest round hole. Will it happen? Well, it should happen.”
I go to buy her another coffee; when I come back, it seems like a good time to remind us both of her core achievement. Regardless of these inevitable misconceptions about neurodiversity, the facts are this: She came up with an idea that has not only become a part of millions of people's lives, but has changed the way we think about human diversity. In that sense, she probably changed the world.
“I know,” she says. “I am aware of that. I'm here too. It was absolutely exhausting, because I had to carry my luggage up and down the stairs everywhere, and I'm tired. But I get credit here. And that's really nice.”
Translation: SK
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