Judy Singer, the writer who coined the term “neurodiversity”, will be speaking at Ideas for Freedom, 22-23 June, about how society can and should make more and better space for the “neuro-divergent”. She talked with Martin Thomas from Solidarity about some of the issues.
This is not a verbatim transcript of the conversation, but a summary checked with Judy.
Can I start from an unusual angle? In mathematics, up to the present day, there have always been many — not a majority, but many — of the most brilliant mathematicians whom later historians or biographers describe as being autistic. Those people were accepted in fact as “neurodivergent” — though the word didn’t exist — as “just different”. They got support. Others went out of their way to work with them in a way that suited them. Could we say that what we want to do today is extend that support to other neuro-atypical people, including those who may be fairly average in their talents in all areas?
Yes. There’s always been a recognition of eccentrics as people with a valuable contribution. But now we live in a time when everyone is expected to have a great level of social skills. We’re trying to open up a space of recognition that people don’t entirely choose their behaviour, to a certain extent they’re born with it, and that society has got to accommodate that.
The idea of “treating” what were seen as mental afflictions is really a creation of the Enlightenment. Before that, probably, not just among mathematicians but also in a peasant village, those whom we would now call “autistic”, on any level, were mostly regarded as just different. What support they got, if any, would probably depend heavily on their family’s attitude and resources. Then we had the “medicalisation” of unusual behaviour. That was a two-sided thing. It signified recognition of a social obligation to help people with difficulties, but also a stigmatisation. Could you say that the neurodiversity movement is trying to push back that “medicalisation” a bit?
Originally we had a “Medical Model” of Autism, looking at it as a problem within an individual. Then in the UK disability rights activists started to talk about how society constructed disability by creating barriers, and about taking down those social barriers. The concept of disability arose as a concept within the welfare state to distinguish between the “deserving poor” and the “undeserving poor”.
As a maths teacher, I’ve had many autistic students who were fine, needing only some adjustments in teaching methods. And the other students were fine with them, too. But I’ve also had students like one who would sit in the middle of the room, in every lesson, knitting, occasionally shouting out about things with no connection to what the other students and I were talking about. There’s a distinction between “just a difference” and “impairment”, isn’t there?
That’s very controversial. There are some people who would say that autism is a difference which shades into an impairment. Other people would want to say that there is no such thing as “mild” and “severe” autism. My sociological research in the 1990s was based on Asperger’s Syndrome, then also known as High-Functioning Autism or HFA. I’ve not really spoken much about what was known as classical autism.
But for me it does shade from “a different way of thinking” to something which some people would not want me to call “severe”. I want to continue to make those distinctions, even though I know the boundary between difference and impairment is very hard to define.
As it is with physical traits: where’s the boundary between being slow and awkward, as I am, and being “impaired”? Apart from autism, the neurodiversity movement is concerned with dyslexia, dyspraxia, and ADHD, isn’t it? And dyslexia is the most common?
There’s also Tourette’s, and I have been invited to address the National Stuttering Association of the USA, who are interested in adopting the concept.
Dyslexia is usually taken to be the most common, but there are people who say that dyspraxia is under-counted, and a lot of people identify with ADHD. But everything here has a fuzzy boundary.
I’m working with Nancy Doyle of Genius Within CIC, who looks at finding accommodations for people who are neurodivergent. Often it’s a simple matter, e.g. of adjusting the soundscape or the lighting in a room. There we’re moving away from the labels and looking at the specific issues which prevent people from participating fully in society.
We are in a transition phase on all this, and I can’t tell how it will end. Human beings are incredibly diverse, and there is a lot of scope for much more individualised provision in education and in workplaces.
Our culture was a kind of Procrustean bed — everyone had to be cut down or stretched into a fixed norm. Now people have more of a sense of empowerment about asking for adjustments.
I’m not an extreme social constructionist. When I was doing sociology I was pretty much surrounded by extreme social constructionists. I learned much from them, but I wanted to find a synthesis of the Social Constructionism and Medical models, and I added a third element, a Minority Model, which I learned from the Deaf Movement.
The Deaf Movement defines being deaf not as a disability, but as belonging to a “linguistic minority”. I grew up in a time when people were widely reckoned to be born as “blank slates”, and eccentric behaviour was something to be blamed on the parents, on society, or on the individual. Now it’s more often described as a matter of being “born like that”. I want to move away from a punitive blame culture to a positive recognition of diversity.
I'd like to comment on Martin's tale of contrasted autistic students in his maths class.
For sure, the autistic students he describes are very different from each other - there is a significant contrast between Student A who needs just a little adjustment in order to participate, and Student B who does not participate but knits and occasionally shouts.
But it is a leap of logic to automatically conclude from this that Student B is impaired.
Student B is certainly a lot more divergent than Student A: a lot more different from typical students. Classroom education is not working for Student B, and this will not be solved by a few adjustment.
But wider divergence is not the same as impairment. It may be that this student is not suited to the teaching format or maybe to the classroom environment. It may be that s/he would learn well in a very different set-up - perhaps one-to-one, perhaps an element of self-teaching, perhaps being allowed to drive their learning through their own interests and habits (there is surely scope for learning maths via knitting?).
Or it may be that this student is impaired.
My point is that we don't know for sure just from observing that Student B is more divergent than Student A.
Student B actually spent most of his school time in the Special Education Unit. The SEU chose a few classes for him to attend (including mine) so he got at least some partial contact with regular classes. In theory an SEU worker came to my classes to work with Student B, but actually, when the worker came, he (the worker) didn't do that but worked instead with "easier" students. According to the SEU, B wasn't doing well there.
Interesting and valuable reflections.
I despair of much constructive interest from the state, however.