Who coined the term ‘neurodiversity?’ It wasn’t Judy Singer, some autistic academics say (2024)

Last month, six autistic academics published a letter in “Autism,” a journal dedicated to autism research, with an explosive assertion: Sociologist Judy Singer, who has been described as the “mother of neurodiversity,” should not be regarded as such and did not originate the concept she has built her career on.

The claims come on the heels of a rocky year for Singer, who has been accused of making transphobic statements on social media, allegations she denies. The letter’s authors say it has been those comments that spurred them to speak out.

“She was getting away with taking credit for the whole neurodiversity idea, presenting herself as the inventor, not the observer. The rest of us were tired, and it wasn’t worth the fight. But her attacks against some of the most marginalized among us were impossible to ignore,” said Martijn Dekker, a computer programmer who helped to host an online forum in the mid-1990s called Independent Living on the Autistic Spectrum, or InLv, where he and the letter writers say the term “neurodiversity” first appeared.

Singer is widely credited with coining neurodiversity in her 1998 honors thesis for her bachelor’s degree at the University of Technology Sydney. Neurodiversity describes the ways people with cognitive disabilities interact with the world in a more neutral, non-pathologizing way than the traditional medical model of disability. But it also describes the social movement for the civil rights of autistic people and those with other neurological conditions.

In an interview with Clare Kumar on the Happy Space podcast that aired this month, Singer said that attempts to discredit her were due to jealousy and mental illness.

“The males that attack me, it’s all competitive jealousy,” she said. “The females who attack me — first of all, they worship me. They claim they’re my best friend. We correspond. I offend them with something, imaginary usually, and then they turn against me and try to destroy me. … It’s called borderline personality disorder.”

In an email to The 19th, Singer said she did not coin the concept of neurodiversity or neurological diversity, but that she only coined the word “neurodiversity” itself. She also accused Dekker of not understanding the academic process.

“If you have read the methodology section of my thesis, I did a full search both in journals and across the internet and found nothing,” she wrote. “Of course I was not privy to the private conversations that may have been happening in the advanced civilizations of the Northern Hemisphere.”

Singer contends that others labeled her the “mother of neurodiversity,” continuing, “I’ve also been called the “Fairy Godmother of Neurodiversity” in jest in case you need more ammunition.”

However, in a now-deleted post on LinkedIn from last June, she described neurodiversity as “a concept that took decades of my blood, sweat and tears lived experience and scholarship to develop, which in my Pollyglossian 60s idealism naivety I did not trademark.”

In another post on LinkedIn from last April, she encouraged people to contribute to a GoFundMe if they “feel that you or your business have derived benefit from my hashtag #Neurodiversity concept.”

Singer’s work and thesis drew on conversations among members in InLv, with the consent of those involved. Dekker and the authors of the letter in “Autism” assert that crediting Singer is in error because the ideas were not only developed on InLv, but because she was not the first to discuss the concept and term there.

Dekker is autistic and joined the neurodiversity movement at its inception, in 1996, before the term “neurodiversity” existed. He was 22 at the time and, like many autistic people, he found it easier to form relationships and connections online. As a programmer, he had experience building and moderating online communities, so he decided to apply his experience to creating an online space for autistic people.

“Social media didn’t exist, Zoom was science fiction and all communication was via text,” Dekker told The 19th. There was one other online forum for autistic people, the Autism Network International Listserv or ANI-L, but “not everyone felt like they fit in there,” Dekker said. So, encouraged by some online friends, he made his own.

InLv is no longer active, but Dekker maintains the archive. He has not made a majority of InLv’s archive publicly available due to concerns about consent and privacy — conversation on the forum encompassed everything from employment to dating to medical issues, and could be highly personal.

“For many of us, myself included, the text-only connections we made on that group were more real than anything we had experienced in ‘real’ life. There was some activism, but mostly we were just sharing our lives, building collective autistic lived experience as we did so,” Dekker said.

Dekker currently conducts autism training for frontline care workers, social workers and others who work directly with autistic people.

In a chapter for a 2019 collection on the history of the neurodiversity movement, Dekker credits Singer, saying she was, “correctly credited with coining neurodiversity.” However, in an interview with The 19th, Dekker said that at the time, he was already having doubts.

“I did have doubts, and if you read my words on it in that chapter, I think you can probably see those doubts implied there. But I was willing to let her have that credit. After all, with her sociological undergraduate thesis and her book chapter based on it, a couple of years later, she was the first to introduce the whole idea to academia. That is a significant achievement,” Dekker said.

Steven Kapp is a lecturer in psychology at the University of Portsmouth and edited the book Dekker’s essay appears in. Kapp is also autistic and an author of the letter. He confirmed Dekker had doubts when his chapter was submitted.

“When [Dekker] submitted his chapter, he knew the neurodiversity concept may have earlier origins than publicly known, but he didn’t have the time [to do the archival work],” Kapp told The 19th. Kapp also felt he did not have adequate funding to compensate Dekker for the time it would take to do the archival research.

Dekker finally felt compelled to dig into the archive on his own, as a direct result of Singer’s statements about trans people, particularly trans women, on social media.

Upon investigation, Dekker found that the earliest discussion of “neurological diversity” was by InLv member Tony Langdon in conversation with Phil Schwarz, before Singer joined the forum. He initially published his discovery as a blog post. In her response to the blog post, Singer called Dekker’s assertions “libels.”

Meanwhile, autistic academics reached out to Dekker about examining his findings, as well as potentially publishing them somewhere more formal.

Robert Chapman, an assistant professor in critical neurodiversity studies at Durham University, was one of the academics who reached out.

“We thought Dekker’s new archival findings were important but unlikely to be widely noticed since they were published on his personal blog,” Chapman said. They emphasized the collective, collaborative nature of the letter.

“Part of the point of the letter is how harmful it can be to assign the products of collective efforts to individuals. … This is partly why we all signed the letter in alphabetical order rather than having a lead author,” Chapman said.

The history of neurodiversity is sometimes difficult to pin down because it is not especially well documented. A lot of organizing occurred on the early Internet, in now-defunct listservs, message boards and blogs. Much has been lost. Ira Eidle is an amateur archivist who runs the Autistic Archive, which attempts to document and preserve neurodiversity history. His work on the archive is an unpaid labor of love — he works at the Georgia Aquarium during the day. However, Eidle is preparing to start a master’s degree program in heritage preservation.

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Eidle does not host InLv in his archive. Dekker turned down Eidle’s request to include it due to concerns about participant consent and privacy. However, Eidle did have some other documentation that suggests Singer did not always see herself as the coiner of “neurodiversity.” In particular, he cited a footnote in a 1998 essay by Jane Meyerding, another early participant in the movement. At the time of the essay, Singer told Meyerding, “I’m not sure if I coined this word, or whether it’s just ‘in the air,’ part of the zeitgeist.”

“What’s really interesting to me is that she wasn’t sure if she coined neurodiversity until it was proven that she didn’t. And now she’s really certain that she did,” Eidle said.

Singer pushed back on this, in an email to The 19th. “As sociologists, we are supposed to demonstrate self-reflexivity,” she said. “It says something about our self-promoting capitalist branding obsession that self-reflexivity is seen as proof of insincerity.”

In her blog post rebutting Dekker’s initial claims, Singer references Meyerding and asserts that her critics are not reading Meyerding correctly.

“Of all the possible explanations of a quote out of context, [Dekker] has chosen the worst possible interpretation,” Singer said. She recalls reaching out to Meyerding to ask if Meyerding had heard the word “neurodiversity” before, as part of her due diligence and to show “reflexivity,” or to question the originality and motives of her idea. She says Meyerding had not heard the term before Singer used it.

Singer has always been seen as a controversial figure in the neurodiversity community due to ideological differences, according to Eidle. He cited disagreements with early movement luminary Mel Baggs about autistic parenting in particular. However, Singer was much less controversial before she began making comments on social media about transgender people last summer.

In June 2023, Singer reposted a message from J.K. Rowling in which the author criticized a Johns Hopkins University definition of lesbian as a “non-man attracted to non-men.”

“Enough is enough.,” Singer wrote. “This is going too far. As a lover and coiner of clean language, I propose there is no such thing as a #trans #woman. Rather, I propose Trans Femoid.”

In online spaces, “femoid” is a derogatory slang term referring to some women, to suggest they are subhuman.

Studies show that autistic people are more likely to be trans or gender non-conforming than the general population, and her statement was not well received by the community. After receiving pushback, Singer deactivated her X account, then posted an apology on LinkedIn.

She promptly retracted and deleted the apology. In a now-deleted follow-up post on LinkedIn, she denied writing the apology, saying it was “a conglomeration of well meaning supporters.”

“I am grateful to them trying to rescue me but I only succumbed because I was wounded and weakened by the ravening mob,” she added. “Having slept on it, I realize all it had done was declaw me. The claws are back.”

Singer has since reinstated her X account and has shared content about sex crimes allegedly committed by trans women, removing trans athletes from competition and criticism of gender-affirming care.

Singer says she is the victim of a “transphobia witch hunt.”

“I have no problem with Trans Males, some of my best friends, really are[ sic.],” she wrote to The 19th.” “I am just grateful that they don’t burn witches any more.”

In her podcast interview with Kumar, Singer went more deeply into her beliefs about gender.

“Women have fought hard for women’s places. Men and women are not the same. We’ve had that debate a million times. Men tend to be more aggressive. They have to come up with their own name. They are not women. Now, I’m not talking about people who are intersex. That’s a whole other story. I’m talking about people with a penis. Straight as that,” she said.

Those comments — and others like them —have resulted in shock and anger among many of her peers.

Nick Walker, professor of psychology at the California Institute of Integral Studies and the creator of neuroqueer studies, said she, too, researched the history of the term neurodiversity.

“In 2019, Judy reached out to me and introduced herself, and tried to pressure me into editing my definition of neurodiversity to name her as the person who coined it. That was our first contact,” Walker told The 19th.

Walker said she made the edit Singer requested, but changed it back after further investigations showed neurodiversity was coined collectively.

According to Walker, who is transfeminine, Singer referred to her and Chapman, who is nonbinary, as “boys” and accused them of “trying to tear down a woman scholar because we were sexist.”

Singer confirmed what she has said about Walker and Chapman’s gender in an email to The 19th. “It’s true that Nick Walker looks like a man, sounds like a man, so it is clear that he is biologically male. Thus as I keep saying that people who want to identify as other than male, need to get creative and find some other word. Actually, I have no idea what Robert Chapman is. I judged by their name only,” she said.

She used different pronouns at different points for Chapman: “I realise that I just called him “he.”. [sic] An honest mistake. I’m leaving it there because he has a male name and wears male clothes. ‘They’” just doesn’t work. ‘They’ need(s) to come up with new pronouns too,” she said.

According to Singer, she has lost work because of her views on trans people, including being “canceled by a German University” and blocked on social media by another unnamed neurodiversity leader and academic in Sydney because “[the leader] thinks men should be able to call themselves women.”

Walker said the real story of the term “neurodiversity,” wherein a community coined the word, is “inspiring” and one that people should know.

“As long as large numbers of people mistakenly believe that Judy is the ‘mother of neurodiversity,’ it gives Judy credibility and a platform, and she’s using that platform to cause harm,” Walker said. “So getting the truth out helps to reduce her platform and thus reduces the harm she can do.”