Autism and women: A voyage of discovery

And why beholdest thou the mote that is in thy brother's eye, but considerest not the beam that is in thine own eye?

Supposing you had spent a large part of your academic career firing off critiques about a certain kind of bias in a certain branch of science. You had accrued a portfolio of earnest warnings about the consequences of bias in said science, handing out advice and recommendations as to how to avoid or spot such bias (some with helpful infographics). You had written a book chipping away at the evidence base that had been contaminated by this bias, triumphantly revealing the flawed arguments that had arisen from this bias.

And then you found out that your very own research displayed exactly the biased characteristics you had clearly outlined for all to see. What would you do? Well, dear reader – I wrote a(nother) book. 

The next section of this piece is an edited extract from the Preface to this book, which outlines the background – how I came to be writing the book in the first place and how what I uncovered revealed the biased world in which I was working (and to which I was contributing). 

A confession

I should start with a confession. I have been part of the problem I am hoping this book will solve.

Over many years, both as a researcher and teacher, as well as something of a social justice warrior, I have eagerly absorbed publications about how the world has short-changed women, not just way back in history, but here, now, in the twenty-first century. These include powerful books about medicine's gender problem, for example, or about the damage caused by data bias in a world designed for men. I have even written one myself, appealing to anyone who would listen, not to be misled by damaging myths about sex differences in the brain.

My 'day job' involved the use of state-of-the-art brain-imaging techniques to investigate what is officially termed autism spectrum disorder (ASD). The research group I worked with was engaged in meticulous explorations of autistic brains to see if there were ways of profi­ling the activity in such brains, to explain why their owners experience the world so differently. When talking about this outside my lab, many people would say something along the lines of 'Autism – that's a boy thing, right?' And I would trot out the 'party line' that autism was, indeed, much more common in boys, perhaps four or ­five times as much, and that, although there were autistic girls, they were 'pretty rare'. I was conscious of the fact that very few of the autistic individuals we were testing were female, which con­firmed this impression.

My wake-up call came when I and a group of feminist neuroscientists I had been working with were taken to task by various high-end media outlets for 'putting women's lives at risk'. We had written several critical commentaries about research into sex differences in the brain. We had pointed out that all too often the researchers had gone beyond what they had actually found, over-enthusiastically describing tiny differences in group average data as 'profound' or 'fundamental', or failing to point out the huge number of comparisons that showed no differences at all.

Our intended message had been that this research was so important that we must be careful to do it well and, as importantly, be cautious about how we wrote about it. This apparently was not what was heard. We were accused of advocating a ban on sex difference research – 'sex difference deniers' and 'feminazis' were some of the more publishable epithets hurled our way. 

Why was this putting women's lives at risk? Because, it was fervently pointed out, there were many brain-based physical and mental conditions where sex differences were clear, so it was vital that all research into such conditions assume that biological sex was exerting some kind of powerful effect on who did or didn't succumb, and research programmes must be designed accordingly. Top of the list for 'male' conditions were almost invariably Parkinson's disease and autism. We feminazis could not and should not ignore 'male-speci­fic risk mechanisms' and 'female-specifi­c protective mechanisms'.

And that is when I started to pay much more attention to what research could or should be telling us about sex differences in autism in general, and about sex differences in autistic brains in particular. Why were fewer females diagnosed as autistic? What had brain imagers found so far in comparing the brains of autistic females with those of autistic males? No spoiler alert, but, as you will see, what I found certainly startled me out of my own biased view of autism and made me ashamed of how much I had unthinkingly contributed to the disconcerting state of affairs in autism brain research.

Autism's male spotlight problem

Science is a bit like the joke about the drunk who is looking under a lamppost for a key that he has lost on the other side of the street, because that's where the light is.

A large part of The Lost Girls concerns how I uncovered just the sort of bias I had been criticising in other spheres – a male bias which had coloured the ongoing autism story on all fronts. Everything about autism seemed to be affected by an unchallenged belief that it was a characteristically male condition. This included the colouring of both the public and the professional understanding (or stereotyping) of who is autistic ('it's mainly males'), the loading of the diagnostic 'gold standard' tests with a (male) template of typical autism (which females would therefore 'fail' to match), a 30-year 'men-only' focus in brain imaging studies of the autistic brain, resulting in a biased evidence base that was only telling half the story.

Everyone had been looking for their own particular 'keys' to autism under the 'autism is a boy thing' spotlight. And my own brain-imaging work was clearly guilty as charged. Models were being developed, neatly mapping on the traditional picture of the autistic male as an 'aloof loner', struggling with social rules and norms. But a wave of powerful personal testimonies from late-diagnosed autistic women challenged the male spotlight and served as a wake-up call. Autistic women were being missed because nobody was looking for them. 

As I discovered, this was particularly true of the brain-imaging community to which I belonged. My book reveals many explanations for how this happened, all of which are a testimony to what happens when a biased lens is applied to a scientific or clinical field of endeavour.

Lessons learned?

And so, having bared my scientific soul and 'outed' my own scientific bias, what did I learn? 

Firstly, that I had made a pretty fundamental error in my early autism research, by accepting without question that the dearth of females accurately reflected a core autism characteristic, that it was much more common in males. I had elsewhere criticised sampling bias and self-fulfilling prophecies, especially in the field of sex/gender cognitive neuroscience, so I should have been more alert to the possibility that this might be going on in autism research. 

I learned that the discovery of autism's previously 'invisible' females was powerfully driven by such females themselves, who found their voice and shared their stories, alerting the autism world and, eventually, the autism research community, to their presence. What they demonstrated was that autism clinicians and researchers had been asking the wrong questions (or not asking enough questions). Their focus had been from an observer's perspective – this is what autism looks like to the outside world (the aloofness, the hyper-focus, the obsessive insistence on sameness – the 'maleness') – and this was the picture which informed everything from research protocols to diagnostic materials. If we had asked what autism is like from an autistic perspective ('what is it like to be you?'), then we would have had a much richer and more accurate portfolio of experiences on which to draw. As a lifelong, hardcore quantitative researcher, I had been trained to 'keep the "I" out' of research design. I think my understanding of autism was the poorer for that, and certainly blinkered. The advent of participatory research, including autistic individuals at every stage of the research process, will do much to embed the lived experience of autism where it belongs. 

This was not the book I set out to write – I had been asked to write a book about sex differences in autism, especially the autistic brain. The realisation that this would be a vanishingly small book set me off on a quest to find the missing members of the autism story, the autistic females. The process taught me much about autism itself (and how much more there is to learn). It also taught me that sometimes the scientific process should include more than closely defined recruitment criteria, backed up by allegedly reliable diagnostic screening, with rigorously controlled experimental protocols and complex analytical pipelines. Sometimes we need to look outside our scan rooms or testing cubicles and check that we are getting the full picture behind the questions we are asking. 

The closing paragraph of my book reflects something of this voyage of discovery:

We have explored the many reasons why girls and women have been missing in the history of autism, and why it matters. We have found our way behind their masks and spotted their differently different autistic behaviour. We have finally welcomed them into our scanners and mapped their differently different brains. Hopefully we can now make the world a better place for them.

• Gina Rippon is Professor Emeritus of Cognitive NeuroImaging at Aston University. The Lost Girls of Autism: How Science Failed Autistic Women, and the New Research that's Changing the Story is published by Pan Macmillan.
• See also our 'neurodivergence' collection.