Mother of neurodiversity, Judy Singer, says people are getting it all wrong
At Free2BMe we are passionate about helping people understand what it’s like to be neurodivergent in a neurotypical world, so that neurodivergent people can live their best lives. This neurodiversity affirmative approach recognises and values our differences. It also recognises that we all have struggles. But the term neurodiversity is being misunderstood, and often misused.
Judy Singer, an Australian sociologist, has been described as the mother of neurodiversity. She coined the term, which combines “neuro”, from neuroscience, and “diversity”, which describes variety, back in 1997. And it caught on, in a big way.
Where the story of autism, ADHD and other neurodivergent conditions was once one of failings, difficulties and deficits, this new term encouraged conversations about difference as a natural variation in humans. It gave us a view of neurodivergence that valued the variety of human brains and ways of thinking and being that hadn’t existed in the same way before. Singer had created “… an umbrella term for a movement.”(1)
“As a word, ‘neurodiversity’ describes the whole of humanity. But the neurodiversity movement is a political movement for people who want their human rights.”
Singer’s concept of neurodiversity advocated the use of a social, rather than medical model, to understand neuro-difference. The medical model, used by the NHS for both addressing both physical and mental health, focuses on differences as deficits, rather than natural variations. If you have a broken leg, the medical model looks to the statistically average “typical” human and says “your leg should not be broken, we will fix it”. It does the same with the way our brains function – if you are not statistically average, not “neurotypical” in the way your brain works, then you need fixing. The social model instead considers how people can be helped to have the lives they want, by providing adaptations, access and focusing on equity, rather than seeing problems to be fixed.
But Singer has struggled to hang on to her original intent for the term neurodiversity. “I could put it [neurodiversity] out there, but I couldn’t control it”(2). She is concerned that the term is increasingly being misused.
“It is being used to mean ‘neurodisability’ when my idea was precisely to avoid dividing humanity into ‘us’ and ‘them’…”
It’s deeply frustrating to hear a term that so many people connect with, that so well describes the difference in our brains and our ways of being in the world, used to pathologise people.
And no-one can blame Singer for pointing this out. But at the same time as bemoaning the misuse of a term that has been so well received, she has alienated many, by also stating that she had not included people with more challenging autistic experiences, in her theory.
Singer believes that only those who might previously have been diagnosed with Asperger’s Syndrome, those she describes as “brainy but socially inept nerds” (2), should be considered as having a brain that fits within natural, human variation. Her challenge, she says, is with the recent move by psychiatry, to viewing autism as one single condition.
“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.” (Judy Singer, 2)
In response to Singer’s position, Steve Silberman, author of Neurotribes, agreed that autism was a disability, AND a difference, but said “I don’t believe it’s helpful to sort groups of autistic people into those for whom the medical model is appropriate and those for whom the social model of disability is appropriate.” (3).
His response notes that:
“Firstly, people with autism in all its guises require adaptation and change to mainstream society to fit in. Secondly, autistic people without learning difficulties can still need a lot of help with the significant challenges they face in their lives, and we don’t want to cut them off from being able to access that help. Thirdly, even autistic people who can’t speak should have the dignity to be able to determine the course of their own lives as much as they’re able to. If they’re trapped inside a medical model of disability, then they risk losing that dignity”(3).
If you watched the BBC’s wonderful Inside our autistic minds, headed up by Chris Packham, you will have seen a film by Murray Bruce, non-speaking autistic campaigner. His words align with Silberman’s and perfectly demonstrate how views such as Singer’s can reduce the autistic experience to deficit, rather than expanding our understanding of difference.
“The voice does not control the ability to ascertain knowledge.”
In fact, Singer’s position on autism feels utterly at odds with the principles of neurodiversity. This kind of contradictory position appears to be common in social and political movements. People connect with the underlying concept, but how they interpret the specifics may vary in important ways. This means differences of opinion can challenge the original premise, but also the power, of a social movement. The Judean People's Front, who were constantly at odds with the People's Front of Judea in Monty Python’s Life of Brian, beautifully observes this destructive tendency.
by arronpaul
Singer herself sides with the TERF feminist faction - trans-exclusionary radical feminists - who reject the idea that trans women are women, a position the seemingly contradicts the feminist notion that people should be considered equal. As with JKRowling, this stance has put a considerable dent in Singer’s reputation and popularity. Together with her stance on autism, popular opinion is turning against her.
Screenshot of Twitter comments, 2 Aug
All this is not purely academic debate - the question is, do those who support the neurodiversity movement reject it now Singer has made her claims about her original meaning, or do we continue to embrace the term as one which describes our core values?
At Free2BMe we advocate:
Social justice
Valuing the other
Recognising and supporting difference
We feel the neurodiversity movement, as it has evolved in the hands of those who believe in it, perfectly encompasses these values, despite it’s association with Singer’s problematic stance.
Our Neurodiversity 101 workshop is designed to explore the wider concept of neurodiversity as a description of human difference. In it we encourage people to consider the definition of neurodiversity from their own perspectives, so that we can gain a better understanding of what it might mean to everyone, not just to the person who coined the phrase. That way, we can create a movement with a shared purpose, not one that alienates those it intended to help.
You can book onto our 13 September Neurodiversity 101 workshop
Or you can sign up to our mailing list to be notified about future workshops
Posted 13 Aug 2023
Refs
1 The mother of neurodiversity: how Judy Singer changed the world, The Guardian, 5 July 23, @johnharris1969
2 An Interview with Neurodiversity Originator Judy Singer, Psychology Today, 26 June 23
3 Autism could be seen as part of personality for some diagnosed, experts say, The Guardian, 31 July 23 @byameliahill
4 Inside our autistic minds, episode 1, BBC iplayer, with @ChrisGPackham
5 Non-verbal, not non-intelligent, Murray Bruce, Dimensions, 2019