In a recent interview, Prof Simon Baron-Cohen has anticipated the announcement of a £26m ($34.5m) gift for autism research at the University of Cambridge from the US philanthropist K. Lisa Yang. The university has said that $28m (£20.9m) would be used to create The K. Lisa Yang Centre for Autism Research, with the remaining sum used to establish an Autism Clinical Centre in the new Cambridge Children's Hospital, which is due to open in 2030.
Such a significant sum donated to autism research is of course noteworthy. The very good news is that Prof Baron-Cohen’s current research direction is looking increasingly at an important gap concerning physical and medical issues among autistic people, in particular their increased risks of cardiometabolic conditions and premature mortality. This kind of research, that sets out to improve the lives of autistic people, is most welcome.
Furthermore, this change in direction appears to have followed the cancellation of the Spectrum 10k project and the resulting acknowledgment by Prof Baron-Cohen of the importance of full consultation and indeed co-creation with autistic people in identifying future research directions. Since I was one of the people who raised objections to Spectrum 10k at the time (for which I received considerable online abuse from someone claiming to represent the project), I am naturally delighted that a project that seemed, at worst, to be potentially eugenicist, has been abandoned and that lessons appear to have been learned.
Even more pleasingly, the interview firmly contradicts Professor Dame Uta Frith’s recent assertion that autism is being over-diagnosed, something else that has concerned me. Prof Baron-Cohen “dismissed the idea that people would seek a diagnosis in a casual way” and he has committed his team to equipping GPs with diagnostic skills for autism, so that waiting times may be dramatically reduced.
The article, though, is headlined “Pioneer of ‘extreme male brain’ theory of autism now says phrase unhelpful” and he does seem to have rowed back somewhat on this, although he now says only that he was “misunderstood”. Unsurprisingly the reaction to this in the autistic community has been characterised by an extreme scepticism mixed with bitterness, with people pointing out that, because of this theory, many autistic women and girls have not been diagnosed.
He also seems to have shifted his position on the question of whether autistic people lack empathy, something that arose from his work with Uta Frith and Alan Leslie in the 1980s which led to the proposition that autistic people lack a theory of mind. He argued that whereas neurotypical people could read other people’s minds effortlessly, autistic people have a “mindblindness” that lies behind their social difficulties (Baron-Cohen 1995). This has been another immensely damaging theory that has affected peoples’ lives very directly and has attracted much recrimination both in online discussion and in academic publications (Botha et al. 2022). The problem was not simply that these theories were proposed, but that they rapidly escaped the laboratory and became accepted as descriptions of autistic people by clinicians, educators, journalists and the wider public.
The ToM-lack idea has largely been superseded by frameworks that emerge from within the neurodiversity paradigm, such as the Double Empathy problem (Milton 2012), but the lingering tail of its effects remains, with lack of empathy being a popular and recurring misconception. Prof Baron-Cohen has clarified in recent work that autistic people have difficulties with cognitive empathy – such as noticing other people’s emotional expressions – rather than affective empathy (the ability to feel for another person). This sounds much more plausible, but for a lot of autistic people the damage has already been done and his reputation is severely compromised. Perhaps this recent change in direction will remedy that.
For me, two important things emerge. The first is the power of research. It is certainly true that research gets misinterpreted – it happens all the time – but it is also crucial that those undertaking research recognise its potential for causing harm. We have ethics committees that are assiduous in assuring that we do no harm when interacting directly with participants in studies. They are much less assiduous when it comes to the long-term consequences of findings. If a Professor has announced a new theory for which they appear to have rigorous evidence, that is usually a cause for celebration in research circles. It is the prize which wins future funding. It is no surprise, therefore, that Professors will fashion plausibly innovative theories as often as possible.
The second comes down to a familiar cliché: nothing about us without us. Had autistic people (what he calls “the autism community”) been involved in Prof Baron-Cohen’s work from the outset, I have no doubt that it would have turned out very differently. At any rate, it is now very clear that the misbegotten Spectrum 10k would never even have started. The imperatives that must be insisted upon are that autistic people must have a co-creative role in the development and undertaking of research into autism. This is neither a plea for downscaling scientific rigour nor for abandoning objectivity. Autistic people are just as capable of reasoning from evidence and recognising unpalatable truths as anyone else. No, this is a plea for involvement in the shaping of a research agenda which materially affects the lived experience of millions of people who so far have been treated more as research subjects than as partners in knowledge creation.
References
Botha, M., Dibb, B. & Frost, D. M. (2022) "Autism is me": an investigation of how autistic individuals make sense of autism and stigma, Disability & Society, 37:3, 427-453, DOI: 10.1080/09687599.2020.1822782
Baron-Cohen, S. (1995) Mindblindness: An Essay on Autism and Theory of Mind. (Cambridge, MA: The MIT Press)
Milton, D. (2012) “On the ontological status of autism: the 'double empathy problem”. Disability & Society, 27 (6). pp. 883-887.
