As history is largely male history, the history of autism is the history of male autism. The condition was defined by two men (Hans Asperger and Leo Kanner) as an predominantly male condition [1] and continues to be associated with a male researcher who characterises it as ‘an extreme male brain’ type (Simon Baron Cohen 2001; 2018). And yet it is widely known that girls are consistently underdiagnosed with autism, and this, combined with the need to ‘pass’ or camouflage as a socially functioning individual, may contribute to the high levels of mental health problems including anorexia nervosa, anxiety, depression and ODC among late-diagnosed autistic women (Will Mandy et al, 2016). There is evidence to suggest that young people with undiagnosed autism [2] and other developmental conditions – especially women – are more likely to be the victims of exploitation, including sexual abuse (Ohlsson Gotby et al, 2018). My questions are: how does the male brain theory of autism help these young women? What if we feel that we are both highly empathic and autistic? Does the EQ really test for empathy as we would ordinarily define it, or might it really be measuring extroversion?

For the researcher Simon Baron-Cohen, autism is intrinsically related to the idea of empathy, as a result of his belief that what he calls ‘cognitive empathy’ requires a fully functioning ‘theory of mind’ that allows us to infer the mental states of others (2001; 2018). In several high-profile pieces of research, he has concluded that the deficits in empathic behaviour by those identified as autistic (according to Baron-Cohen’s Autism Quotient or AQ scores) are due to theory of mind deficits (or ‘mind blindness’ as it has been called elsewhere). Baron-Cohen defines empathy as ‘1) the ability to keep in mind someone else’s mind (a ‘dual-focus’ of attention), which in turn 2) affords the ability to recognise (cognitive empathy) and 3) respond (affective empathy) appropriately to the emotions, thoughts, and feelings of others’ (2001).

Baron-Cohen’s ideas about autistic empathy deficits hit the news again as a result of latest data sample developed as a result of the Channel 4 documentary ‘Are You Autistic?’ (2018). In a recent interview for The Conversation Baron-Cohen was keen to assert that this does not mean that ‘autistic people lack empathy or that autistic people are more male’, but this assertion reveals the tacit assumption that society characterises us on just this basis. The prominent TV writer and producer Bryan Fuller has reportedly described empathy as ‘the opposite of autism’ in a much-cited interview (at least by autistic viewers who identified with the highly empathic character Will Graham) with the Writers Guild of America West. No wonder young women who are already experiencing difficulties do not wish to self-identify as autistic, since we only have Rainman to compare ourselves to.

In the article for the National Academy of Sciences upon which the Conversation piece is based, Professor Baron-Cohen and his team argue that the data from the 671, 606 respondents to the online questionnaire supports ten predictions from the Empathizing–Systemizing (E-S) theory of sex differences and the Extreme Male Brain (EMB) theory of autism. The empathising-systemising theory of typical sex differences ‘posits that, on average, females will score higher on tests of empathy than males, and that, on average, males will score higher on tests of systemising than females’ (Greenberg et al). The team ‘confirmed that typical females on average are more empathic, typical males on average are more systems-oriented, and autistic people on average show a “masculinized” profile’, meaning they have ‘type S brains’ (or systematising brains, where systematising is ‘defined as the drive to analyse or build a rule-based system’).

Baron-Cohen links these findings to pre-natal exposure to testosterone, arguing that boys are by definition more at risk. He hypothesises that it is this exposure which leads to the reduced empathising and increased systematising abilities in all autistic individuals. Yet the American neuroscientist, Lise Eliot, believes that the data to support the idea that testosterone determines brain differences in men and women is ‘extremely weak’ and based on non-transferable research on animals. This overlooks ‘potentially more powerful social, psychological, and cultural contributors’ (quoted in Braithwaite, 2018).

Baron Cohen and his team’s latest findings are significant not only because of how they will impact on the cultural realm, but also in terms of the direction of future research, since it lends support for genetic ‘treatments’ of autism via the proposed presence of pre-natal testosterone exposure. The research also provides support for the notion that society must impose a kind of moral education on autistic people, without asking autistic people whether we do experience empathy, and what it means to us.

In the history of psychiatry, normative ideas of the proper behaviour of the sexes have a problematic history, specifically by way of imposing cruel and degrading treatments on women as a result of their ‘hysteria’, and the pathologisation of homosexuality. The idea of empathy itself has a problematic history; severed from its roots in the 19th century as the ability to project your own feelings into the inanimate work of art, and appropriated into psychology as the term that determined whether clinical subjects had any redeemable qualities (Lanzoni 2018). Baron-Cohen’s research feeds into these discourses by portraying the autistic woman in unsympathetic terms; in a society defined by groupthink, we can easily see how characterising autistic women as having ‘male brains’ this way makes them vulnerable to accusations of gender impropriety and even immorality. Further, the autistic man who does not display extrovert, socialising tendencies is seen as being unfeeling, a potential psychopath. There are also those that argue that, while we might not be psychopaths, without an adequate theory of mind we cannot belong to the community of humans in a moral sense.

You could say that I am misappropriating Baron Cohen’s theorising. In the Conversation article, he asserts that autistic people do have empathy. In earlier work he has suggested that autistic adults are able to develop a theory of mind despite having a limited innate ability. If this were true, it would mean that there should in fact be no marked difference between the ‘cognitive empathy’ component of EQ between the autistic and non-autistic subjects. We might even find that autistic individuals exceed the cognitive empathy of non-autistic peers, if we bear in mind that as a minority, we have no choice but to learn to understand non-autistic peers.

Autism consultant, writer and lecturer, Dr Damian Milton has suggested that differences in supposed empathic responses between autistic and non-autistic individuals may ‘not be due to autistic cognition alone, but a breakdown in reciprocity and mutual understanding that can happen between people with very differing ways of experiencing the world’ (Milton 2018). His theory of the ‘Double Empathy Problem’ has been supported by evidence from research by Elizabeth Sheppard and team at the University of Nottingham, Brett Heasman at the London School of Economics, and Noah Sasson at the University of Texas at Dallas, which that show that in experimental conditions ‘non-autistic people struggled to read the emotions of autistic participants, or form negative first impressions of autistic people’.

Of the 60 questions in the full length EQ test developed by Baron-Cohen and his colleagues, 11 test for Affective empathy, 11 for cognitive empathy, and the final 6 for ‘social skills’. So, it seems, if we struggle with social skills for any reason (due to a lack of experience, for example, sensory issues or difficulties with fast-paced verbal communication) we are already at a disadvantage in being awarded a higher EQ score. These questions include EQ8 ‘I find it hard to know what to do in a social situation’ and EQ57 ‘I don't consciously work out the rules of social situations’. AQ (autism quotient) test measures a number of the same ‘social’ abilities as the EQ test, creating a predetermined likelihood of the participants scoring relatively lower on EQ than Systematising (S), and relatively higher on their AQ scores.

The AQ test itself is also problematic because it focuses on a deficits-based model of autism. There are many rival theories of autism which account for difficulties that autistic people themselves report in neurobiological terms: these include the ‘Monotropism’ hypothesis and ‘intense world syndrome’ (Murray, Lesser and Lawson 2005; Markram, Rinaldi and Markram 2007). Some of this research directly involves the work of autistic researchers who are trying to understand themselves, and they are widely cited in the autistic community. Yet, we do not learn about these in mainstream media, and hence they have no chance to influence cultural understandings of autism.

As a result of the cultural dominance of the ‘male brain’ theory, autistic women seem to me to be up against a particularly insidious double or even treble discrimination: against what society counts as appropriate gender behaviour, against what counts as appropriate cognitive functioning and against receiving a diagnosis that helps them to make sense of their lives. And yet: many autistic individuals and their allies report particular strengths in autistic people, such as their honesty, integrity and focus. What is certainly the case is that propagating the idea that autistic people lack empathy or have gender-stereotypical brains will not help to positively improve the lives of women with autism who are victims of sexual abuse or other kinds of manipulation. These stereotypes will have surely impacted on both the ways people respond to autism tests and those who participate in studies such as Baron-Cohen’s.

While my concern in writing this article is to improve the likelihood of young women receiving appropriate diagnosis and support. Yet I have struggled with these issues myself: I am a late-diagnosed autistic woman, and I experience empathy even with those who cause me pain, and from my point of view this is far from untypical among my neurotype. I also have the ability to think in a way that might be defined as ‘systematising’ (I am an academic, and I believe that at least part of this is as a result of my education, and the desire to make sense of a confusing world). The idea that women should be ‘empathic’ in Baron-Cohen’s sense seems to me to put autistic women at further risk of feeling they need to respond with culturally defined appropriate emotions in situations that are damaging and dangerous to them. It would make more sense to ask autistic adults, including women, what does empathy feel like to them, rather than assuming such a state is not possible.

And can we be so certain that we know what empathy is? It is certainly a word that has changed its meaning hugely in the past 100 years. To me, the focus on defining autism as deviance from a far from an opaque social norm suggests a lack of interest in developing an ethics of mutuality and understanding that will help us with the troubling times we have ahead. It also means that we will never fully understand either autism or empathy.

While I believe that Baron Cohen’s research stems from genuine wish to understand autism, exploring it in terms of what it is not will never produce results that can make a positive difference to autistic lives. Theories such as the Monotropism Hypothesis and Intense World Syndrome do offer this. Until these are understood, we remain in the shadows waiting until we are allowed to have a say on who we are.

Acknowledgements: with thanks to Nick Chown and Eve Riches for their helpful comments on this article.

Asperger's 1944 paper reported on 4 boys. Kanner's 1943 paper reported on 8 boys and 3 girls. So in total they reported on 12 boys and 3 girls, a 4:1 ratio of boys to girls. Strangely, this is often the ratio referred to after all these years. I am sure this is just a coincidence. By the way, my view is that in reality the ratio is much closer to 1:1 than this.’ From personal communication with Dr Nick Chown. According to Elizabeth Hughes, women are likely to receive one of 30 (incorrect) diagnoses before they are correctly diagnosed with autism. Her findings are presented in ‘Does the different presentation of Asperger syndrome in girls affect their problem areas and chances of diagnosis and support?’, in Autonomy, The Critical Journal of Interdisciplinary Autism Studies Vol 1, No 4 (2014) n.p.

References:

Bargiela, Sarah, Robyn Steward and William Mandy ‘The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype’, in Journal of Autism and Developmental Disorders, October 2016, Volume 46, Issue 10, pp 3281–3294.

Braithwaite, Phoebe. ‘The underdiagnosis of autism in girls is a story of gender inequality’, Wired Magazine, 12 May 2018. Online at: https://www.wired.co.uk/article/underdiagnosis-autism-women-and-girls

Greenberg, David M., Varun Warrier, Carrie Allison, and Simon Baron-Cohen, ‘Testing the Empathizing–Systemizing theory of sex differences and the Extreme Male Brain theory of autism in half a million people’, National Academy of Sciences, 12 November 2018.

Greenberg, David M., Varun Warrier, Carrie Allison, and Simon Baron-Cohen, ‘Extreme Male Brain Theory of Autism Confirmed in Large New Study’, The Conversation, 12 November 2018. https://theconversation.com/extreme-male-brain-theory-of-autism-confirmed-in-large-new-study-and-no-it-doesnt-mean-autistic-people-lack-empathy-or-are-more-male-106800

Hughes, Elizabeth, ‘Does the different presentation of Asperger syndrome in girls affect their problem areas and chances of diagnosis and support?’ Autonomy, The Critical Journal of Interdisciplinary Autism Studies Vol 1, No 4 (2014) n.p.

Lanzoni, Susuan. ‘The Limits of Empathy in Schizophrenia’, in Empathy: A History, New Haven, CT: Yale University Press, 2018.

Markram, Henry, Tania Rinaldi, and Kamila Markram. ‘The Intense World Syndrome – an Alternative Hypothesis for Autism’, in Neurosciv 1(1) 2007.

Milton, Damian. ‘On the ontological status of autism: the ‘double empathy problem’. Disability & Society, 27(6)(2012) pp. 883-887.

Milton, Damian. ‘The Double Empathy Problem’, 2 March 2018. Online at: https://network.autism.org.uk/knowledge/insight-opinion/double-empathy-problem

Murray, Dinah, Mike Lesser and Wendy Lawson. ‘Attention, monotropism and the diagnostic criteria for autism,’ Autism, 1 May 2005.

Ohlsson-Gotby, V, P. Lichtenstein, N Långström N1,2, and E. Pettersson. ‘Childhood neurodevelopmental disorders and risk of coercive sexual victimization in childhood and adolescence - a population-based prospective twin study.’ J Child Psychol Psychiatry. 2018 Sep; 59(9):957-965. doi: 10.1111/jcpp.12884. Mar 23 2018.

Swift, Glenn (dir). ‘Are You Autistic?’, Betty TV/Channel 4 Television. First broadcast March 2018.