Simon Baron Cohen - More awareness, little practical effect

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As a graduate in the 1980s, Simon Baron‑Cohen taught autistic children at a special school in London. Little was known about autism then, and people often misheard him, assuming he taught “artistic children”.

“People would be ashamed if they had an autistic child, or ashamed of saying, ‘I am autistic’, whereas now it’s treated as more ordinary and there’s less judgment,” he says. “In the 1980s, autism was seen as categorical, so ‘you either have it or you don’t’ … nowadays, we talk about a spectrum.”

Today, Baron-Cohen, 61, is a world expert on autism, a Cambridge professor and director of the university’s influential Autism Research Centre. There is also greater awareness of autism, a lifelong condition affecting how people interact or process information.

Yet his latest research reflects how improved awareness and understanding of autism have not led to improvements in the lives of people with autism. In the studyexploring how autistic adults experience disproportionately more “negative life events”, 45% of the 426 participants say they often lack money to meet basic needs (compared with 25% of non-autistic people) and 20% have been sexually abused by a partner (compared with 9%). The research, involving questionnaires created with autistic people, suggests why those with autism may experience more depression.

These findings add more weight to existing evidence about the significant challenges facing autistic people. Diagnosis can take years; children face cuts to special educational needs provision; just 16% of autistic people had jobs in 2016 (compared with 80% of non-autistic people); and they are among those locked up in secure hospital-style units instead of living in communities. The Autism Act a decade ago obliged the government to create a strategy to improve support, but legislation has fallen short of promises.

"Many autistic people and their families will tell you that while the [government’s] autism strategy has raised awareness, nothing much has changed on the ground in the last 10 years. And, despite our research flagging up suicide risk and other kinds of vulnerability, too many autistic people are languishing unsupported because there’s no new money in social care for autism. This is unacceptable,” says Baron-Cohen.

He says: “The old style of doing research was, without [us] realising it, arrogant, in that the scientists thought up the questions and then did it. The new way is to involve people from the outset … to codesign the studies, and check the relevance and wording.” Gaps between research and practice influenced plans for a £35m Autism Centre of Excellence by 2025. Aiming to be the UK’s first national clinical and research centre for autistic people, it will combine academic expertise with practical help. In theory, children or adults referred by a GP would get a diagnosis, then immediate support from specialists like psychiatrists, employment or benefits advisers. “Locally, we’ve got this research centre and world-famous university, and all around it people are sitting on waiting lists, unable to be seen, and they’re struggling, so it’s about closing that gap,” he explains.

Baron-Cohen’s late sister, Suzie, had severe learning disabilities. She was sent to an institution aged two (common advice from doctors at the time). Later in life, he moved her to supported housing near his own home. She died in 2014. In an emotive eulogy, he recalled of his sister: “Our lives were richer for having shared the journey with her.” He talks movingly of her and how she influenced his work. “Maybe because I had a sister with a disability I was already sensitised to and fascinated by people who think or develop differently,” he says.

He has won national and international awards for researching the biological, hormonal and genetic factors in autism. Yet Baron-Cohen’s theories remain controversial. The extreme male brain concept, outlined in his provocative book, The Essential Difference, describes men’s brains being wired for systemising and women’s for empathising. This led to criticisms of “neurosexism” and gender stereotyping, which could risk misdiagnosing or underdiagnosing autistic women, and also of fuelling the idea that people with autism have no cognitive empathy. In his defence, he stresses that “equality between the sexes is very important”, adding that his research explores groups of males and females “on average”, adding “this is not about individuals”. With empathy, he argues that while autistic people may struggle to imagine others’ emotions, they feel emotion if others are upset (the distinction between cognitive and affective empathy).

In future, he hopes the idea of neurodiversity becomes more mainstream. “Brains come in different types and they’re all normal,” he says. “What we want is that one day every workplace will be diverse – we already encourage that with gender and ethnicity, but the next frontier is neurodiversity and it will become ordinary. People won’t think twice about it.”

Autistic adults are vulnerable to many types of negative life experience, including employment difficulties, financial hardship, domestic abuse and ‘mate-crime’, according to new research published today in the journal Autism Research.

This research highlights the challenges that autistic adults face in our society. With the right support many of these events are preventable
Sarah Griffiths
These negative life experiences could partially explain higher rates of anxiety and depression symptoms and lower life satisfaction in autistic adults compared to non-autistic adults.

Mental health conditions, such as anxiety and depression, are extremely common in autistic adults. Negative life experiences increase the risk of anxiety and depression in the general population, yet few studies have investigated whether vulnerability to these types of experiences might be responsible for higher rates of depression and anxiety and autistic adults.

One barrier to investigating vulnerability in autism is the lack of suitable measures. The research team, based at the University of Cambridge, Autism Research Centre, therefore developed a new measure called the Vulnerability Experiences Quotient (VEQ).

The team worked with an advisory group of autistic adults to develop the measure to ensure that it included experiences that autistic people felt were relevant to them. The VEQ asks participants whether they have experienced 60 negative life events, across a wide variety of settings, and including both adulthood and childhood experiences.

426 autistic adults and 268 non-autistic adults completed the VEQ via an online survey. The two groups had similar levels of educational attainment and the majority of autistic adults did not have intellectual disability. The autistic participants reported higher rates of 52 of the experiences in the VEQ.

This included items relating to financial hardship: 45% of autistic adults said they had had a period of life without enough money to meet basic needs, compared to 25% of the non-autistic adults; domestic abuse: 20% of autistic adults that had been in a relationship had been sexual abused by their partner, compared to 9% of the non-autistic adults, and ‘mate-crime’: 70% said they had been bullied by someone they considered to be a friend, compared to 31% of the non-autistic adults.

Participants also completed measures of anxiety and depression symptoms and a brief life-satisfaction scale. Autistic adults reported higher levels of depression and anxiety symptoms and lower levels of life satisfaction.

Those individuals with the highest number of negative life experiences on the VEQ also experienced the highest number of current anxiety and depression symptoms and the lowest current life satisfaction.

Although this study cannot prove that these negative experiences cause depression, anxiety or lower life satisfaction, as these are just associations, these findings are consistent with the idea that vulnerability to negative life experiences is partially responsible for higher rates of anxiety and depression and lower life satisfaction in autistic adults.

Lead author Dr Sarah Griffiths, said: “This research highlights the challenges that autistic adults face in our society. With the right support many of these events are preventable. We need to ensure that all autistic adults have appropriate support to reduce their vulnerability and to improve their mental health outcomes.”

Dr Carrie Allison, one of the Cambridge research team said: “The results of this study are a wake-up call indicating the serious extent of negative experiences that autistic adults suffer in most areas of their lives. This study focused on intellectually able autistic adults due to the online survey method. Future work will focus on adults with intellectual disability who may have a different set of vulnerabilities.”

Professor Simon Baron-Cohen, director of the Autism Research Centre at Cambridge, said: “This research is vital to inform Government policy makers worldwide about the appalling violations of autistic people’s human rights. Our next step will be working hard to translate these findings into new policies, such as the need for every autistic person to have a life-long support worker to whom they can turn to help them navigate the world”.

Clara, an autistic adult from London commented on the study: “This research is so important to me. Despite being intelligent and good with people, I've had too many negative challenging situations in my life - with work, close relationships, access to health, social services, and education. It has affected, and continues to affect my mental health"

This study was funded by the charities Autism Research Trust and Autistica. The research also benefited from funding from the Queen Anne’s Gate Foundation, Mishcon de Reya LLP with support from Gesher School, the NIHR CLAHRC East of England and the IMI AIMS2TRIALS.

Discussion
This cross‐sectional study measured vulnerability of autistic adults to a variety of negative life experiences using a newly developed VEQ. The VEQ was designed based on the literature on risk factors for mental health conditions, and using a participatory research approach [Nicolaidis et al., 2011], to measure negative experiences that autistic adults felt impacted on their mental health. Autistic adults were more likely than non‐autistic adults to have experienced the majority of the events assessed by the VEQ, demonstrating their significant vulnerability in society. Furthermore, autistic traits, measured using the AQ‐10, were associated with experiencing a greater number of negative life experiences in the VEQ in individuals with and without an autism diagnosis.

We found an association between vulnerability experiences and current anxiety symptoms, depression symptoms and life satisfaction in autistic and non‐autistic adults. As expected, autistic adults had higher rates of depression and anxiety symptoms [Joshi et al., 2013; Mazurek, 2013; Roy et al., 2015], and lower life satisfaction [Kirchner et al., 2016; Schmidt et al., 2015] than non‐autistic adults. A mediation analysis suggests that these group differences may be partially due to greater vulnerability to negative life experiences in the autistic group. Although we cannot determine the direction of causality from this study, future longitudinal studies should test whether victimisation and other negative life experiences are a cause of high rates of co‐morbid anxiety and mood disorders and lower life satisfaction in autistic adults.

Our findings highlight several important understudied areas of vulnerability for autistic adults. First, as well as confirming previous findings that autistic children are often bullied by peers [Cappadocia et al., 2012], our study also found high rates of other types of victimisation. An alarmingly high number of autistic adults reported having been victimised physically, verbally, emotionally and sexually by adults when they were children. This is in line with a recent study that found that autism diagnosis was associated with parent‐reported experience of maltreatment [Dinkler et al., 2017]. We also found that autistic adults who had been in a relationship were more likely to have been sexually, physically, financially and emotionally abused or threatened by a partner compared to non‐autistic adults in relationships. We believe this is the first study to report an association between autism and domestic abuse. The lack of previous research in this area may be due to the belief that few autistic people have romantic relationships. However, in our sample of intellectually able autistic adults, 83% had been in a romantic relationship, suggesting that many autistic adults are potentially vulnerable to domestic abuse.

A second understudied area of vulnerability explored in this study is financial hardship and exploitation. High numbers of autistic adults reported financial difficulties, including having nowhere safe to life. These difficulties may result from financial exploitation, as well as unemployment, given almost half of our sample reported being tricked or pressured in to giving someone money or possessions. Studies have shown that parents of autistic children experience financial difficulties [Sharpe & Baker, 2007] and vulnerability to financial victimisation has been reported in adults with intellectual disability [Gillian, Lynn, Kenneth, Michael, & Priscilla, 2017] but this is the first study to show the extent of financial difficulties for autistic adults. Our finding that many autistic adults have housing difficulties is in accordance with a recent study that found high levels of autistic traits in a homeless population [Churchard, Ryder, Greenhill, & Mandy, 2019].

A third unexplored area of vulnerability investigated in this study was parent contact with social services; a topic suggested by our advisory group. Nineteen per cent of autistic parents, around four times as many as in the non‐autistic group, reported that their ability to care for their child had been questioned by a professional. There was no statistical evidence that autistic parents were more likely to experience referral to social services, a child protection investigation, or have their child removed by social services than non‐autistic adults. This may be due to insufficient power to detect group differences for these rarer events. Nonetheless, it is important that further research looks at why the parenting of autistic adults is being questioned and how autistic parents can be supported without feeling judged.

As well as highlighting some relatively understudied areas of vulnerability, our study also found high incidence of some well‐established vulnerabilities. In line with previous studies [Taylor et al., 2015], we found evidence of substantial difficulties in employment. Although 90% of our sample had held paid employment, rates of negative experiences such as long‐term unemployment and losing jobs were high. Similarly, although 62% had university level qualification, many reported experiences of difficulty within education, for example missing lessons due to anxiety and depression or stress. This demonstrates that individuals that might be considered ‘high‐functioning’ are vulnerable to negative events in education and employment that may affect their mental health.

Similarly in line with previous research [Rava et al., 2017], we found that autistic adults are at high risk of being cautioned and possibly arrested by police. However, we did not find that autistic adults were more likely to have been charged with a criminal offence, to hold a criminal record, or to have spent time in prison than non‐autistic adults. Again, this may be due to insufficient statistical power to detect differences between groups for these rarer events. Alternatively, it may suggest that autistic individuals are more likely to attract police attention, perhaps due to unusual behaviours, but are not more likely to commit crimes. Either way, this finding highlights the importance of autism awareness training for police [Crane, Maras, Hawken, Mulcahy, & Memon, 2016].

Negative experiences related to mental health were very common in our autistic group. Perhaps most strikingly, 60% reported having made suicide plans, 41% reported making a suicide attempt and 64% reported self‐harming. This is higher than a previous estimate from a study of recently diagnosed adults that reported 35% had experienced suicidal plans or attempts [Cassidy et al., 2014]. This may be explained by the higher prevalence of depression (63%) in our sample compared to the previous study (32%) [Cassidy et al., 2014]. There was also evidence of experiencing difficulties with getting diagnoses of co‐morbid conditions, with 40% of autistic adults compared to 5% of non‐autistic adults reporting having been misdiagnosed with a mental health condition.

In this article we do not explore the reasons that autistic adults are more likely to experience each event measured by the VEQ. Given the broad range of events covered it is likely that there are many different predictors and that these differ for each event. For example, the items in the education section will depend on support available at the school or college that the individual attended. Future research should look to determine the specific risk factors for each event to identify ways of reducing risk of these events through policy and practice changes. Individual difference in cognitive traits such as IQ, social cognition, tolerance of uncertainty, emotion regulation, and sensory sensitivities may also contribute to an individual's vulnerability to each event. These cognitive factors have been linked to negative mental health outcomes [Boulter et al., 2014; Bruggink et al., 2016; Cai et al., 2018; Eussen et al., 2013; Hollocks et al., 2014; Wigham et al., 2015], but their influence may be partially mediated by increasing vulnerability to environmental triggers. Interventions aimed at reducing negative events identified in this study may therefore work to mitigate the impact of these cognitive factors on mental health.

Limitations
There are limitations to this study that should be considered. First, our groups were not matched for age and gender. The autistic group included more males and was slightly older than the control group. After controlling for age and gender in our analyses, some of the group differences for specific events were no longer statistically significant. This suggests that these events are more common for autistic individuals partially because they are more common in men (e.g. being arrested). Conversely, there was one item on sexual abuse in childhood for which evidence for a group difference increased after controlling for gender, possibly because this experience is more common for women. However, even after controlling for gender and age, the overall picture of high rates of negative life experiences remained, as did the association between number of negative experiences and mental health outcomes, suggesting that while vulnerability may manifest slightly differently for men and women, autism increases vulnerability to negative life events in both genders. Second, the control group may not have been representative of the general population, as they reported high rates of diagnoses of mental health conditions and higher than average scores on the AQ. However, if we did have a more representative control group, the group differences in mental health symptoms and life experiences would likely be even larger. Third, the VEQ contains a number of items that are only applicable to some individuals; for example, the domestic abuse items are not relevant for people who have never been in a relationship. This means that the total score on the VEQ may underestimate the potential vulnerability of the autistic individuals who have less opportunity to experience some of the events. Finally, this is a cross‐sectional study so it is not possible to determine direction of causality. Although our findings are consistent with the hypothesis that vulnerability to negative life events contributes to higher rates of anxiety, depression and lower life satisfaction in autistic adults, it is almost certainly a bidirectional relationship in which these mental health conditions also cause vulnerability to negative experiences (e.g. make one more likely to be sectioned or lose a job). Further longitudinal studies would be needed to determine the nature of causal relationships.

I find this encouraging coming from such a high profile autism researcher. I'm still not on board with his male brain theory though

He's done some big pendulum swings back and forth.

My own view is that it is time Simon came out of the AS closet. If footballers in the UK are brave enough to come out as gay these days, and a recent one announced he was HIV positive, then maybe Simon could man up and disclose what I believe he has known for at least a year or two now.

His dark days of painting AS people in puerile or violent colours has long seemed to me a classic case of the defence mechanism known as reaction formation. (For example when a self-hating gay man in the closet campaigns against gay liberation or tries to smear gay men as pedophiles).

If he dared to come out, he could use his education and talent to more than redress the balance of his former harms.

Neurotypical people have been massively misinformed about AS. Voices of protest from the AS community are not listened to by the major perpetrators of misinformation.

I believe this could be changed, though not quickly, by selective, effective and sustained initiatives. Start with offering them some guidelines to regulating their offensive behaviours toward AS people, as The Guardian did this week

On the AS side, it seems to me that the majority of AS people sit and wait and hope for this to "just happen". If you do nothing, then nothing happens except more of the offensive or ignorant things that most NTs say and do to act out disrespect toward the AS minority, effectively oppressing them in social, educational, workplace and other major arenas of socio-cultural life.

But change has to start with AS people. Many seem to do nothing but wait for rescue/understanding/acceptance to just happen, which it will not.

I regard this as extremely sad.

I imagine that I seem quite cynical whenever I discuss these things

Neurotypical people have been massively misinformed about AS. Voices of protest from the AS community are not listened to by the major perpetrators of misinformation.

I believe this could be changed, though not quickly, by selective, effective and sustained initiatives. Start with offering them some guidelines to regulating their offensive behaviours toward AS people, as The Guardian did this week

On the AS side, it seems to me that the majority of AS people sit and wait and hope for this to "just happen". If you do nothing, then nothing happens except more of the offensive or ignorant things that most NTs say and do to act out disrespect toward the AS minority, effectively oppressing them in social, educational, workplace and other major arenas of socio-cultural life.

But change has to start with AS people. Many seem to do nothing but wait for rescue/understanding/acceptance to just happen, which it will not.

I regard this as extremely sad.