Person who coined "Neurodiversity" controversies

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Australian sociologist Judy Singer, who coined the term ‘neurodiversity,’ was forced to delete her Twitter account after sharing her TERF views on the social networking site. In two tweets, the woman attacked the transgender community and also quote-tweeted JK Rowling, leaving netizens infuriated.

The academic is well-known for her study on autism. She was initially renowned in the community. However, it now seems like she has come under fire for her views.

Judy Singer took to Twitter and announced to her followers that those who do not have autism cannot call themselves autistic, those who are Caucasian cannot call themselves Blac, and those who are biologically male cannot call themselves a woman. Adding fuel to the fire, she tweeted:

“If you are an actual biological woman, don’t be suckered into your own erasure.”

Judy Singer went on to quote tweet JK Rowling, who had said in a tweet that in the current day and age, a woman can only be defined in reference to a biological male. She went on to say that a person can be described as a woman only by “an absence, a vacuum where there’s no man-ness.”

The popular author was referring to a John Hopkins study on the LGBTQ community, which was describing the lesbian community.

Judy Singer added in the tweet:
“Enough is enough. This is going too far. As a lover and a coiner of clean language, I promise that there is no such thing as a #Trans #Woman. Rather, I propose Trans Femoid. #Femoid.”

Followers of the sociologist were enraged by her transphobic views and opined that she is a danger to the autistic community.

Judy Singer coined the term ‘neurodiversity’ in between 1997-1998, as part of her honours thesis at the University of Technology, Sydney. In her work, titled A personal exploration of a new social movement based on “neurological diversity,” she introduced the “autistic self-advocacy movement.”

The sociologist coined the phrase ‘neurodiversity’ after discovering that people with different ways of thinking were similarly oppressed to women and gay people. She believed that they needed their own movement, which led to her finding a movement that has helped several people battling mental health struggles today.

She has also done her best to support the neurodivergent community. As per Neurodiversity2:

“she was the founder, via the internet, of the world's first support group for people raised by autistic parent, became the secretary of Sydney’s largest support group for the parents of autistic children and a co-founder of Sydney’s only independent social club for teenagers on the spectrum.

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.

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.

“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.”

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.”

“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.

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.

“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.’

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.”

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.

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.

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.”