Simon Baron-Cohen’s Change of Direction and the Legacy of Autism Research

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.

 

The Autism Spectrum has not collapsed.

Dame Professor Emeritus Uta Frith has recently suggested in an article in the Times Education Supplement that autism should no longer be understood as a spectrum. In her view the category has expanded so far that it has “widened to the point of collapse”.

I think she is wrong. However, I am not going to attempt a line-by-line refutation of her argument. Several other writers have already done that very effectively. I just want to offer some more situated insights.

Speaking from the inside, the expansion makes perfect sense.

I say that both as an autistic person (diagnosed or, as I prefer, “professionally identified” as such by psychologists) and as someone who has spent much of his working life thinking about how different minds organise perception, attention and creativity.

The idea that autism is a spectrum is not an abstract theory to me. It simply and effectively describes the sheer range and variety of autistic people I have known, worked with and read over many years.

For most of the twentieth century autism was defined quite narrowly. It was primarily associated with children who had very visible developmental differences and who were usually diagnosed early in life. Many other people who would now be recognised as autistic simply passed through life under different descriptions: shy, eccentric, obsessive, socially awkward, gifted, difficult. Some struggled quietly, while others built lives that accommodated their differences in various ways.

What has changed in the past two decades is that these experiences have begun to coalesce into a shared language. Adults have started recognising themselves in descriptions of autism. Women who were overlooked in childhood have begun receiving diagnoses later in life. Autistic people themselves have increasingly written about their experiences in ways that were largely absent from earlier research.

To some observers this widening of recognition looks like diagnostic inflation. I believe instead that we have simply become better at recognising autism.

Part of the tension here is historical. Much of modern autism research developed around a set of cognitive theories that attempted to explain autistic behaviour in terms of deficits. The most influential of these was the idea that autistic people struggle with “Theory of Mind”: the ability to infer other people’s thoughts and intentions. This idea, which was partly developed by Uta Frith herself, has been enormously influential and helped shape research agendas for decades. But it has also caused great harm to autistic people.

Once autism is framed primarily as a deficit in understanding other minds, it becomes easy to make assumptions that autistic people lack empathy, lack imagination, or lack insight into their own experience. Those assumptions have travelled far beyond academic psychology to become part of the cultural story about autism.

What has changed in recent years is the arrival of autistic writers, researchers and advocates into a space that was previously populated by non-autistic psychologists. Their presence alone contradicts the idea that autistic people lack a theory of mind.

These autistic writers and researchers have increasingly challenged the notion that social differences can be explained simply as a one-sided deficit. Damian Milton’s “double empathy problem”, for example, suggests that misunderstandings between autistic and non-autistic people arise from differences in perspective on both sides. Communication difficulties may reflect a mismatch between neurotypes rather than a failure on one side alone.

I should add a personal observation here, although it is not a scientific one. In my own experience I often find that I “click” more quickly and more comfortably with autistic people who have significant learning disabilities and little or no spoken language than I do with many neurotypical people. Communication takes a different form, of course, but the sense of mutual understanding can be surprisingly immediate. Experiences like this make it difficult for me to see autism as a collection of unrelated conditions. There is often a recognisable affinity across the spectrum itself. If the spectrum had truly “collapsed”, as Frith suggests, that affinity would be much harder to explain.

The growing diversity of people identifying as autistic is not evidence that the concept has broken down. It reflects the fact that autism was never a single uniform condition to begin with. Even among those diagnosed in early childhood there has always been enormous variation: in language, cognition, sensory experience, interests and ways of engaging with other people. The word “spectrum” was introduced precisely to capture that diversity.

To be clear, I am not especially attached to the term “spectrum” itself. It is often misunderstood as a simple linear scale running from “mild” to “severe”, which is not a very good description of autistic variation at all. A more accurate image might be something closer to a circle, or perhaps a landscape, in which different traits appear in different combinations. Two autistic people may have very little in common on the surface and yet still recognise something of themselves in each other.

It is also not possible to infer very much about someone’s intellectual abilities simply by looking at them. Some autistic people who speak little or not at all have extremely rich inner lives. Equally, people who appear highly articulate, successful and independent may still find themselves overwhelmed in particular situations and, at those moments, require a great deal of support.

My disagreement with Frith is therefore not really about terminology. It is about the argument that the growing diversity of autistic people somehow invalidates the concept altogether. In my view the opposite is closer to the truth.

What has expanded is not the category of autism, but our recognition of how many different forms it can take. My own experience illustrates the point. Once I had the diagnosis, many aspects of my own history suddenly became easier to understand.

Much of my music is built from rule systems, permutations and constraint-based processes derived from areas of focus that are often non-musical. This is a way of working that many autistic people immediately recognise. What I have described as a “stubborn literalism” often gives rise to abrupt formal changes in focus, rather than smooth and continuous transitions.

Only since my diagnosis did I begin to recognise how closely these habits of thought aligned with descriptions of autistic cognition. Ideas such as monotropism, intense focus or Flow and pattern-based reasoning are highly appropriate. The autism was not new. What was new was finally having a name for it.

When I speak with other autistic people, I often hear similar descriptions of attention and perception: a pleasure in pattern, an attraction to detail, an instinct to explore structures very thoroughly. These ways of thinking can sometimes create friction in social environments that rely heavily on implicit expectations and rapid intuitive signalling. But they can also be powerful creative resources.

None of this means that autism brings no difficulties. For many people it involves real challenges, and some autistic individuals require substantial support. But it also involves distinctive patterns of attention and perception that are part of the richness of human cognitive diversity.

From that perspective, the claim that the autism spectrum has “collapsed” looks less like a discovery than a reaction to a changing conversation.

For many years autism research was shaped almost entirely by clinicians and psychologists observing autistic people from the outside. Today autistic people themselves are participating in the discussion about what autism means, as writers, artists, scholars and researchers. What Frith describes as the “collapse” of the spectrum looks rather different from the inside. What has expanded is not autism itself, but our ability to recognise it.

That shift inevitably unsettles some older frameworks.

Autism may not be a straight line running from “mild” to “severe”. It may be closer to the circle or landscape I described earlier: a space in which different patterns of perception, attention and communication appear in many different combinations.

The autism spectrum has not collapsed: it is the people describing it who have changed.