Q&A with Gina Rippon on Autism in Women

In this Q&A, Gina Rippon discusses her research interests relating to the study of female autism. She has recently published a review in the BMC journal Biology of Sex Differences, and her latest book, published by Pan Macmillan (UK) and Seal Press (US), will be released in 2025.
Q&A with Gina Rippon on Autism in Women
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Gina Rippon is Professor Emeritus of Cognitive Neuroimaging at the Aston Brain Centre in the United Kingdom. She uses brain imaging techniques to investigate developmental disorders such as autism. Her work also challenges the myth that gender gaps are linked to ‘essential’ differences between female and male brains. She is an outspoken critic of "neurotrash", the populist (mis)use of neuroscience research to (mis)represent our understanding of the brain and to prop up outdated stereotypes. Her book on this topic, ‘The Gendered Brain’, was published in 2019.

Please tell us a little about yourself and your research interests. What are the foci of your publications and of your forthcoming book, and why are they so important to convey to the academic community as well as practitioners?

Throughout my career, my research interests have always been focussed on trying to understand what makes brains different, and how those differences might explain differences in behaviour and/or deficits in particular cognitive skills. My Ph.D was on what was then called the 'psychophysiology of schizophrenia'; I was trying to find ways of measuring the neurobiological differences between paranoid and nonparanoid schizophrenics.  This ‘brain differences’ theme has been a thread through my subsequent research into atypical cognitive problems such as dyslexia, and issues of neurodiversity typified by autism in all its various manifestations.

The current focus of my neuroimaging research publications is on autism, particularly with respect to linking the predictive coding model of the brain to the characteristic signs of autism, from sensory sensitivities through to social communication difficulties. (Although “current” is rapidly becoming a misnomer, as my ‘hands on’ imaging research days are pretty much over). I have to – shamefacedly - admit that this research did not involve any consideration of sex differences. 

I also spend a lot of time working with national and international colleagues on critical analysis of communication in the field of sex/gender research. This type of research attracts a lot of public interest but can worryingly be open to misunderstanding and misinterpretation, which can then sustain inaccurate and possibly harmful sex/gender stereotypes. Researchers may unintentionally overstate what they have found or use ambiguous or confusing jargon to describe it. My colleagues and I have an ongoing campaign of “impression management”, urging researchers to ‘mind their language’ and ensure they are really clear about how they write about any sex differences they find and what they mean. 

My forthcoming book brings together my mainstream autism research interests and my involvement in gender equity issues. The initial aim of the book was to describe the science behind the emerging stories of late-diagnosed autistic women, a recent wave of powerful personal testimonies from women who had not been identified as being on the autistic spectrum until well into adulthood; I wanted to investigate what neuroscience might have to say about such individuals. The answer to my initial investigations was “not a lot”! When, as I found, more than 70% of brain imaging studies into autism had not, until quite recently, included women, then it seemed clear that there was a major problem of bias in the autism story.

The evidence of women being sidelined or ignored in the recognition of, and research into, autism is certainly an issue for academic researchers as well as practitioners. In fact, what I call the ‘male spotlight’ problem in autism highlights the entanglement between the two communities. The persistent focus on autism as a ‘boy problem’ meant that the diagnostic dice were loaded in favour of males, with the result that women on the spectrum were just not available or considered eligible for neuroimaging research projects. Not only were they denied any therapeutic support that an autism diagnosis might have afforded them (an issue for practitioners), they were also excluded from contributing to the research evidence that was exploring the bases of their neurodivergence.

Please discuss the key points of your review article: Differently different?: A commentary on the emerging social cognitive neuroscience of female autism within the context of your research and your forthcoming book: The Lost Girls of Autism: How Science Failed Autistic Women - and the New Research that's Changing the Story.

The key thing I wanted to draw attention to was the startling evidence that, until the last decade or so, neuroimaging research into the brain bases of autism rarely included females. My forthcoming book about autistic women was to be about the science behind the emerging stories of late-diagnosed autistic women who had been ignored and overlooked until well into adulthood. However, it turned out that this sidelining also applied to the very research that might have offered some answers.  This means that many of the early exploratory models had been based on ‘men only’ studies, but with the inference that such models applied to all autistic individuals.

How did this happen? A more general point with respect to science and research in general, is that the observed preponderance of males in autistic populations has served as a long-standing framework in all spheres of autism-related issues. These range from recognition and diagnosis, through to public awareness and stereotypical media representation, to theoretical models as well as cutting-edge research agendas. This makes the autism story an interesting case study into the origins of bias in science, and how many strands of the scientific process can be affected.

What inspired you to write a book particularly about autism in women and girls? What was it that piqued your interest about this topic when you began your career?

Shamefacedly, I should admit that the highly technical research I was pursuing with respect to autism did not initially intersect with my activism in the field of sex/gender research. My attention was drawn to the issue of the apparent under-representation of women in autism by criticisms of my criticisms of generic sex/gender research!

The (mistaken) illusion that my colleagues and I were advocating a ban on sex differences research was frequently countered by reference to conditions where there was “irrefutable evidence” of sex differences. The alleged consequence was that research into such conditions would be harmed if ‘sex difference deniers’ or ‘feminazis’ such as myself undermined or derailed their efforts.

Autism is almost invariably the #1 nominee for conditions ‘much more common in males’. So I thought I should investigate what NI had to say about sex differences in the autistic brain. As the answer began emerging as …”Neuroimaging research has had virtually nothing to say about sex differences in the autistic brain because, in general, no-one has been looking for sex differences in autistic brains” it did seem that there was an issue that should be aired!

This resonated with much of my social justice/critical neuroscience interests that have threaded themselves throughout my career. If science itself has a blinkered view of a socially or politically relevant question, then its contribution to any solutions must in itself be questioned.

In your article in Biology of Sex Differences, you discuss the ‘male spotlight’ in autism research: “in many cases, only male autistic participants were tested”. We know that the research community is primarily male-dominated, but why do you think that these scientists did not acknowledge that by not studying women, they were not benefiting their research and the results?

Perhaps the statement that the research community is primarily male-dominated might be a conversation for another day! (and may actually not be an accurate representation in the autism research field – there are many great female researchers!).

I think the research shortfall that I describe comes about for several reasons. Perhaps the most powerful is, fundamentally, a pragmatic issue. The many practical and financial hurdles that neuroimaging researchers have to overcome in setting up any kind of project are manifold; if you add clinical populations into this mix, they can become overwhelming. Because of the many recognition, referral and diagnostic barriers that women who should be accepted as being autistic face, any researcher hoping to study such females will be drawing on a very diminished pool. And, as I pointed out in my paper, this is also true to the big data sets that were established in order to overcome such problems.

Entangled with this, is what I have dubbed the male spotlight problem, that the well-established and oft-repeated belief that autism is more common in males means that researchers might not have been overly concerned if there were very few, if any females, in their clinical cohorts. But, admittedly, this should have been acknowledged.

I think this has led to many missed opportunities and biased explanatory models, due more to lack of awareness rather than lack of care.

Why can we see more camouflaging in females than males, and is it related to gender socialization?

The million dollar question! It is definitely the case that autistic camouflaging appears to be more common in females. How much is this related to gendered socialisation? Certainly, the female autism ‘lived experience’ literature wholeheartedly supports this. For example, in Joanne Limburg’s book “Letters to my Weird Sisters” she observes “Many of the moments when my autism caused problems, or at least marked me out as different, were those moments when I had come up against some unspoken law about how a girl or woman should be, and failed to meet it”. The psychiatric literature on the ‘internalising’ of mental health issues in females suggests that gendered socialisation has a powerful role to play in the ’muffling’ or ‘minimising’ of internal distress. As do wider discussions on the role of what I call the ‘born to be mild’ directives in girls’ upbringing, with much greater emphasis on fitting in, belonging, or not drawing attention to yourself, for example.

Whether what we see in autistic females is just a reflection of the consequences of gendered socialisation for all females, or whether their autism makes them more susceptible to such pressures will be a very interesting research question for the future!

How are practitioners diagnosing girls and women nowadays, as opposed to in the past? If girls are still camouflaging, how do they know what to look out for?

Luckily there have been very insightful researchers working on this problem – not only drawing attention to the male bias in the so-called ‘gold standards’ tests for autism, but also devising ways of ‘spotting’ camouflaging, which, by its very nature and intent, is hard to recognise! Excellent and thought-provoking tests have now been developed specifically to measure ’camouflaging’ and ‘masking’.  This will make an enormous difference in overcoming the male spotlight problem, particularly in younger girls who may have been suffering all through their primary school years due to unawareness of their problems.

Why do you think there has been an exponential increase in the number of diagnoses of autism in children, both male and female, from 2015 until present?

I’m glad you said ‘diagnoses’ and ‘not ‘cases’- I believe the issue is not about there being more autism, but that it has become more recognised! There have been discussions about this “exponential increase” really since the 1980s, when the much more wide-ranging definitions of autism in DSM-3, and the inclusion of categories such as “Asperger’s Syndrome”, saw a very dramatic increase in the number of diagnoses being reported. (Lorna Wing, the UK psychiatrist primarily responsible for driving this change, referred to it as “opening Pandora’s Box”). The CDC in the US is now reporting a preponderance of 1 in 36 in some States. Some, but by no means all, of this increase is due to the greater recognition of females. Quite often it may be a route for getting therapeutic support for children (and sometimes adults) who are struggling.

How is your research field evolving, and what do you think will happen as a result of your research? 

With respect to autism research in general, a fundamental shift has been brought about by ‘participatory  research’, with the inclusion of autistic individuals at all stages of the research process; sometime referred to as the “nothing about us without us” movement.  This marks a great step forward in developing a valid investigatory framework. Asking autistic participants “what is it like to be you?” will allow researchers to start asking the right questions about the autism experience. This should also include revision of traditional autism screening and diagnostic questionnaires. This may also help raise awareness of what autism really looks like, hopefully switching off the male spotlight!

With respect to social cognitive neuroscience and autism, technological advances in more user-friendly brain imaging brain-imaging techniques could allow more inclusive research into the more challenges aspects of the condition. Combined with contemporary Virtual Reality techniques, it could become possible to model more realistically the everyday aspects of life on the spectrum and investigate the challenges they present.

The advent of machine learning data interrogation procedures should allow autism researchers to ask much more complicated questions of their vast arrays of data, to spot previously hidden patterns and to reconfigure meaningful groupings within such data.

What is the future of autism research with regard to the understanding and development of non-binary and transgender research? 

This is a really intriguing issue. The importance of autism as an identity (“finding my tribe”) resonates well with many contemporary issues of gender identity. As the incidence of gender nonconformity or gender variance is higher than average in the autism community, it suggests that this intersection could provide a rich source of insights into any form of identity. 

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Go to the profile of Sophie Gray
3 months ago

Such an interesting read/topic!

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Autism Spectrum Disorders
Life Sciences > Health Sciences > Clinical Medicine > Diseases > Psychiatric Disorder > Autism Spectrum Disorders
Neuroscience
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Cognitive Neuroscience
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Neurological Disorders
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