The mother of neurodiversity: how Judy Singer changed the world

‘It was like [my mother] came from another planet, or another dimension’ … Judy Singer. Photograph: Anna Gordon/The Guardian

Judy Singer is several thousand miles from her Australian home, on a two-week trip around the UK, which includes an onstage interview at Cambridge University and her receipt of an honorary fellowship from Birkbeck, University of London. Soon after we meet, she will do a round of sightseeing, then travel to meet relatives in Hungary. Her itinerary sounds very taxing, but her tiredness is combined with the pleasure of being belatedly honoured for her trailblazing work.

We meet in a central London cafe where, for nearly three hours, she guides me through a life story that takes in the aftermath of the Holocaust, life in communist eastern Europe, her family’s migration to Australia, and a life that has mixed academia and activism with plenty of struggle and hardship. But what we talk about the most is neurodiversity, the concept she quietly introduced to the world in 1997.

Nearly 30 years after she coined the term in an undergraduate thesis, it is now almost universally used and understood: an idea that beautifully captures the plain fact that autism and a range of other conditions – ADHD, dyspraxia, dyslexia and more – are part of the endlessly different ways that human minds are wired. In doing so, it also achieves something even more powerful: implicitly demanding liberation and acceptance for people who are, to use an associated 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 originated with the black American civil rights movement. ‘Biodiversity’ is really a political term, too. As a word, ‘neurodiversity’ describes the whole of humanity. But the neurodiversity movement is a political movement for people who want their human rights.”

Back in the 1990s, Singer could sense that movement stirring in some of the groups that had sprung up in the early days of the internet. What people were talking about chimed with her own history and experiences – her apparently neurodivergent mother, Singer’s autistic daughter, and a range of traits she recognised in herself. To some extent, what people were discussing online was centred on their own psychologies, but it was also about wider society: the ways that its organisations, institutions and attitudes made many people’s lives all but impossible, and how those things could be changed.

Singer well knew the potential importance of what she was trying to describe; in giving it a name, she hoped she might somehow speed up its growth into something unstoppable. “I thought, ‘We need an umbrella term for a movement.’ And I also perceived that this was going to be the last great identity politics movement to come out of the 20th century.”

There then comes an unexpected reference point. “It partly came to me when I saw that film Grease,” she says. “There was this character … what was his name? Eugene. The nerd. It was considered perfectly OK for him to be bullied and pushed downstairs and everything else, and I thought, ‘This is not OK. This is a movement that needs to happen.’”

She pauses. “I thought, ‘We’re no longer going to be fair game’ – in other words, we’re going to change this. And we have.”

Singer, who is 72, was born in Hungary, to a Jewish mother who had survived the Holocaust – transported to Auschwitz, but saved from death when she was made to work in a German aeroplane factory. In 1956, she, Singer’s father and their four-year-old daughter left their native country as a result of the failed Hungarian Revolution and the Soviet crackdown that followed it. They settled in the Australian city of Brisbane – where, as she grew up, Singer began to notice her mother’s seemingly odd behaviour.

“It was like she came from another planet, or another dimension,” she says. “I started thinking that when I was quite young; I thought she came from somewhere where the rules were much simpler. She didn’t understand our rules, and she would get extremely frustrated and upset. I think I became my mother’s social translator, to some extent, because her naivety got her in trouble.”

‘It was considered perfectly OK for [Eugene in Grease] to be bullied and pushed downstairs and everything else, and I thought, “This is not OK”’ … Judy Springer Photograph: Anna Gordon/The Guardian

A troubled look flickers across her face. “She had meltdowns all the time. She monologued. What she wanted to talk about was her village [in Hungary] and the relationships between all the people – all their life stories, and where they worked and where they lived, but not really showing any understanding of the emotional side of it. She would always segue into that if you were talking to her.”

Singer says she is still unsure whether her mother’s behaviour was down to autism, the trauma of the Holocaust or both. But when she herself became a parent – in 1987 – she soon began to think deeply about the complexities of human psychology, and traits and tendencies that people inherit from their parents.

Her newborn daughter, Singer says, “looked at everything around her, but not into my eyes”. When she started school and Singer observed her in the playground, “all the children were playing together, and there she was, walking up and down, 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 tended to be understood as a clearly differentiated condition, largely associated with people who were either non verbal or had very limited speech, and appeared somehow cut off from other individuals. Her daughter, by contrast, was “the most loving, affectionate child you could ever hope to meet”. But when she finally spoke to people at the Autism Association of Australia, she got her first sense of new thinking that recently had been sparked by the trailblazing British psychologist Lorna Wing – about autism being a spectrum condition that blurred out into humanity as a whole, and Wing’s identification of a sub-category of autistic people she named after the Austrian psychologist Hans Asperger.

I asked an old friend from university, the other day: ‘Do you think people thought I was eccentric?’ She said, ‘Oh yes’

“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 at the age of nine, Singer began to recognise certain traits in herself. “Difficulty making eye contact. Confidence. I actually asked an old friend from university, the other day: ‘Do you think people thought I was eccentric?’ She said, ‘Oh yes.’ I would sit side by side and talk to people without looking at them, in a monotone really. I was a nerd: a brainy egghead. And I have dyspraxia. I’m disorganised.”

Singer worked for a while in the embryonic IT industry. Then, in her early 40s, she enrolled as a part-time undergraduate at Sydney’s University of Technology, where she did sociology and disability studies. Her sudden access to the internet meant that she could now talk about autism using newly established online mailing lists, including one named Independent Living on the Autism Spectrum, AKA InLv. This was where Singer found the American writer and journalist Harvey Blume – who, in a piece written for the New York Times, described the defining idea of InLv as “neurological pluralism”.

He and Singer then began to talk regularly on the phone. To quote from the definitive autism history Neurotribes, by the American writer Steve Silberman, “it was in these talks with Blume that she came up with the term neurodiversity”.

In the meantime, Singer had decided to write a thesis focused on the online communities she was now part of, and her sense that they were cohering into a new social movement, comparable to those focused on feminism and gay rights. In keeping with convention, she began to look for academic experts: high-ranking specialists in autism and the discourse around it who might be able to help her. But she couldn’t find anyone.

“And then I had that moment: ‘Oh my God, it’s me. Someone’s got to do it, and that’s why I’m here. To write about it.’ And also, we needed a movement. So that’s I wrote my thesis about.”

It was titled Odd People In, and had two subtitles: The Birth of Community amongst people on the Autistic Spectrum, and A personal exploration of a New Social Movement based on Neurological Diversity. Some of it was autobiographical – about her mother (“I was fascinated and repelled by her singular oddness,” Singer wrote), her daughter and herself. Much of the rest described a burgeoning movement that insisted on autistic people’s right to be heard and respected. Singer was clear that her focus was on those then known as “high-functioning”, many of whom had Asperger’s diagnoses – people who could self-advocate, which inevitably omitted many autistic people. But that did not diminish the force of her arguments, nor the sense that if the movement she wrote about made real advances, all neurodivergent people might feel the benefits.

The text, which was soon included in a British Open University anthology titled Disability Discourse, is now available in an ebook called Neurodiversity: The Birth of an Idea. In retrospect, almost everything in it seems unbelievably prescient. “Linked together by computers and the internet,” Singer wrote, “autistics have begun to elaborate a new kind of identity. They counterpose themselves against those they have dubbed ‘neurotypical’ or NT, a term they have coined to sideline the word ‘normal’ with all its prescriptive connotations. Autistics are beginning to see themselves as a kind of neurological ‘other’ who have existed amongst and been oppressed by the dominant neurological type, the NT, whose hegemony has until now neither been noticed nor challenged.”

Here was a new vision of what it was to be autistic, and how societies needed to change. Slowly, it began to make its way into the wider world.

***

Harvey Blume published a short article in The Atlantic magazine in September 1998, which contained the first mention of neurodiversity in the media. Then, Singer says, “I forgot about it. No one was interested. I had to get on with my life, I had to make a living. I was a sole parent, I lived in public housing …”

She sighs, but then the conversation brightens. In 2013, there was a belated watershed moment. That year marked the 20th birthday of Wired magazine, which ran a special issue centred on the most influential ideas of the last 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 the idea’s invention.

“Somebody rang me – one of my friends,” she says. “They said, ‘Did you know you’ve just been cited 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 that.” Silberman has since paid tribute to Singer by not only telling her story in Neurotribes – which was a bestseller – but paying glowing tribute to her work: “Few can claim to have coined a term that changed the world for the better. Judy Singer can.”

Singer then watched as neurodiversity began to snowball, including in Australia. “People would ring me up and say, ‘Neurodiversity’s been mentioned again.’ It was on the ABC news at home. Someone said, ‘You’ve been mentioned as the Australian sociologist who came up with this idea.’ I thought, Great. So I rang ABC and I said, ‘I live near you – I could run there if you’d like to talk to me.’ And nothing. I know you’re meant to persist if you want to get on, but I’ve got other things going on in my life.”

This story returns the conversation to something Singer feels very deeply: the frustration of being largely unrecognised in her home country. “It’s Australia that hurts,” she says. “And the fact that I don’t have any close people to discuss ideas with because I have to wait until someone wakes up in London, or the United States. I don’t have any kind of collegiate thing happening at home. Everything has to happen on Zoom, and that’s exhausting.”

We’ve now been talking for more than two hours, but the conversation goes on. We talk about her unease about the removal of Asperger’s syndrome from international diagnostic manuals, the lack of women in the tech industry, and much more. And then she alights on one of her frustrations about latter-day understanding of what neurodiversity means: the fact that it is sometimes used as a corporate buzzword, denoting the need to include different kinds of people in the workforce. This, she says, sounds reasonable, but it misses a lot of crucial points.

“On my blog, you’ll see that one of my subtitles is something like, ‘I’m not here to make capitalism more efficient; I’m here to make it more humane,’” she says. “I also say that there’s a right to work and there’s 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 no punitive welfare systems, which are often about forcing the nearest square peg into the nearest round hole. Is that going to happen? Well, it should happen.”

I go and buy her another coffee; when I return, it seems a good moment to remind us both of her basic achievement. Notwithstanding those inevitable misunderstandings of neurodiversity, the fact remains: she came up with an idea that not only became part of millions of people’s lives, but altered the way we think about human difference. In that sense, she probably changed the world.

“I know,” she says. “I’m aware of it. And I’m here. It’s just been absolutely gruelling, because I’ve had to drag my luggage up and down stairs all over the place, and I’m tired. But I get recognition here. And that’s really nice.”