One on one… with Simon Baron-Cohen

‘Stories of forgiveness are inspiring to me’ (includes online extras)

One moment that changed the course of your career

In September 1981, June Felton, headteacher of Family Tree School for Autism, phoned me to say she’d heard I’d just graduated. She said she had a vacancy for a teacher in her small experimental unit of just six kids and six teachers that she ran in the back of her house in Hadley Green in Barnet, North London. It was experimental in that she had video cameras in every room: staff meetings at the end of each school day comprised analysis of the videos, to learn what did or didn’t work in specific teacher–child interactions.

It was an amazing environment because in those days there were so few specialist schools for these kids, because the school learned by observation and evidence, and because the headteacher invited a stream of stimulating professionals to come visit. I was the teacher, the school minibus driver, the cook, whatever was needed. That inspiring year allowed me to get to know those six children in detail, and their parents, and led to my writing to my wonderful former tutor in Oxford, Peter Bryant, to ask him where to study for a PhD in autism. He wrote back to say ‘There is no one better than Uta Frith’. He was of course right.

Just this year I met up with June Felton again, who has just turned 80 and lives in Jerusalem. She came to Cambridge and presented me with a most special gift: a complete set of the videos from the early 1980s at Family Tree, as a donation to the Autism Research Centre, with the original parents’ consent. She and I are still in touch with the parents of those original six children, now in their early forties. We talked about how those films – even though from a small sample – might give clues from a micro-analysis of what predicts long-term outcome.

One cultural recommendation
The film The Enigma of Kaspar Hauser by Werner Herzog (1974). It is the story of a young man who turned up in Nuremberg in 1828. He had almost no language, no social skills, and just a few letters in his pocket that hinted at his history of how he had been reared in social isolation for the first 17 years of his life. It is also a fascinating factual drama depicting the efforts by Herr Daumer, back in the early 19th century, to teach language and social skills to Kaspar, despite his uncertain mental age. Daumer’s empathy for someone who is different shines through.

One inspiration
In 2013 I gave the ‘Forgiveness lecture’, and on the panel with me was Mary Foley, mother of 15-year-old Charlotte. Charlotte was stabbed and killed in east London in an unprovoked attack by a stranger called Beatriz, who believed Charlotte was someone else. Beatriz wrote to Mary from prison, wracked with pain and guilt, asking for forgiveness for killing Charlotte in a moment of madness. Mary realised Beatriz was a troubled young person who had made the worst mistake a person could ever make, and wrote back, saying ‘I forgive you’.

Stories of forgiveness over-riding the desire for revenge and the emotion of hatred are inspiring to me, and give me hope that, even in currently desperate regions like Israel and Palestine, humanity may resurface. Find out more about the remarkable charity called the Forgiveness Project here: www.theforgivenessproject.com/stories/mary-foley-england/

One autism myth
That a woman can’t have Asperger syndrome (AS) if she can chat, make eye contact, fit into a friendship group, and raise a family. This myth is one of the reasons many women who seek a diagnosis are turned away or misdiagnosed, and it persists because many clinicians focus on surface behaviour and don’t ask more probing questions.

A ‘systemising’ approach to social interaction may mean their difficulties with cognitive empathy ‘leak out’ via rather subtle clues such as frequent faux pas, or talking too loud, or standing too close to others, or failure to understand socially appropriate boundaries. It’s what Franky Happé and Uta Frith called ‘hacking out’ social skills, a good phrase that underlines how complex a phenomenon it is that we are dealing with, where a person may try to ‘emulate’ what others do more intuitively.

I would also tackle the myth that people with autism lack empathy. The autism spectrum is very wide, so it’s almost impossible to come up with any generalisations that hold true for everyone on the autism spectrum. However, I’ve met hundreds of them over my career and my experience tells me that whilst most people with autism struggle with the cognitive aspect of empathy (also known as ‘theory of mind’), most have intact if not well-developed levels of affective empathy (caring about others, and wanting to alleviate their suffering). This in some ways makes them the mirror image of psychopaths, who usually have intact if not heightened cognitive empathy (hence their ‘talent’ at deception and finding out exactly what another person’s emotional vulnerability is), but who often have reduced or sometimes absent affective empathy (hence just not caring if someone else is suffering).

Of course, there are some people with autism who struggle with both cognitive and affective empathy, and some of these even wind up in the criminal justice system for serious crimes. In my experience these are less than 0.5 per cent of the autism population, and it is vital to remember that such crimes are committed by a higher percentage of the non-autistic population. This means we really can say that aggression and cruelty are not specifically associated with autism per se.

When we occasionally hear of someone with Asperger syndrome (AS) committing serial murder (as has been claimed about some of the recent ‘shooters’ in the US), the fact that they have AS is likely to be incidental. The more important causal factors in their case are the secondary social isolation, social exclusion, marginalisation, and seething anger and resentment that these ordinary and preventable secondary factors can cause, in anyone.

One proud moment
For the past 17 years, my colleagues and have been trying to test whether autism is associated with elevated levels of fetal testosterone (FT). It’s a hard question to answer, because you have to find a safe way to measure FT (which ‘masculinises’ brain development during fetal life during pregnancy) without interfering with the baby’s development. Back in 1997 we figured out we could measure FT in amniotic fluid, then wait for the baby to be born, and observe how he or she develops.

By 2010 we had amassed 235 amniotic samples from pregnant women. Only 6 per cent of pregnant women opt to have amniocentesis for clinical reasons, and you can’t ethically perform amniocentesis for research (because in 1 per cent of amniocentesis, this results in miscarriage). Since autism is only 1 per cent of a general population, that means that among our 235 amniocentesis samples, only 2 or 3 of these children may have developed autism – way too few to draw any firm conclusions.

Instead, we used the amniotic fluid samples from these otherwise 235 typically developing children to show that FT is positively associated with three different measures of autistic traits, rated via parental report. But how were we going to go from autistic traits to clinical autism? We needed a much larger collection of amniotic samples.

The breakthrough came when we started collaborating with the Danish Biobank in Copenhagen, where the now retired Professor, back in the 1980s, had started storing every amniocentesis sample he analysed for clinical reasons. Today there are over 100,000 amniocentesis samples in their freezer, approved for use in research. Denmark also had the foresight to set up a National Psychiatric Register, so that every time anyone in the country is given a psychiatric diagnosis, it is recorded in a single database. So we knew who in Denmark has developed autism; all we had to do was to see if their amniocentesis sample was in the Danish Biobank deep freezer. That gave us over 128 boys with autism or AS to study, and plenty of ‘controls’ without a diagnosis.

The proud moment for me came on 3 June 2014, when we published our paper in Molecular Psychiatry (see tinyurl.com/n64k2qy), showing elevated rates of FT (and the fetal sex steroid hormones from which FT is synthesised) in the amniotic fluid of babies who later received a diagnosis of autism or AS. As I cycled home from the Autism Research Centre that day and crossed the bridge over the River Cam, I reflected on the long journey from our first amniocentesis study in 1997, to this one 17 years later. We had finally seen the result we predicted all those years ago.

The pride was a collective feeling, because talented PhD students who worked on this project had come and gone, and a few of us were still there at the end of the project, to appreciate the importance of this result. To the rest of the world, it was just another paper… to me it was one of those deeply satisfying moments, marking a special milestone for our hard working and dedicated research team.

One hero
John Bowlby. He was a medical student in my college in Cambridge (Trinity), and studied psychology as part of his Tripos degree. His attachment theory is beautifully applicable across social primate species, not just humans. It led to insights into serious adult human psychiatric conditions, such as borderline personality disorder (BPD) and its links to early childhood abuse (some 80 per cent of people with BPD suffered neglect or abuse in childhood). It had humanising applications to children’s wards in hospitals that no longer separate children from parents, and to primary education (parents are no longer barred from the classroom), and beyond.

I was lucky to go out for dinner with Bowlby after his departmental seminar at UCL when I was a young lecturer there, in 1989. He was about 82. I think I managed, during that dinner in Bloomsbury, to hide my massive admiration of him, so that we could enjoy an ordinary conversation.

One book
Steven Pinker’s The Language Instinct (Harper Perennial Modern Classics, 2004). He’s a master at communicating the science of the mind to a wide audience, without dumbing it down. Whether he’s talking about FOXP2 that was trumpeted as the ‘gene for language’ (discovered by Simon Fisher in his PhD at the Institute of Psychiatry, in a large extended family many of whom had speech problems), or about how deaf kids generate syntax in their spontaneous sign language in the playground, or the evidence for language in other species, he writes entertainingly. Sprinkling his writing with references to Woody Allen jokes and deftly jumping between disciplines, he illustrates how psychology sits at the intersection of all of these.

- Simon Baron-Cohen is Director, Autism Research Centre (ARC), and Professor of Developmental Psychopathology, University of Cambridge

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