Did you know that boys are 10 times more likely to be referred for an autism diagnosis than girls? Or that boys who are referred for an autism diagnosis are more than twice as likely to be diagnosed as autistic as are girls who have been referred? But this shouldn’t be surprising, as ‘autism is a male problem’, right? Almost every autism-related website, research paper or journal article tells us that autism occurs much more frequently in boys, on average about four times as often, although ratios of 15:1 have sometimes been quoted.
But suppose you were told that teachers, presented with identical vignettes of hypothetical children, are more likely to identify the child as autistic and in need of support if the child is called ‘Jack’ than if the child is called ‘Chloe’. That girls who are eventually diagnosed as autistic may wait several more years than boys to be assessed. That research shows that up to 80 per cent of autistic females may initially receive an inappropriate diagnosis – of social anxiety, or an eating disorder, or borderline personality disorder – before it is recognised that they are autistic.
Importantly, these missing autistic women have found their voices. There is an online forum for late-diagnosed autistic women called the Late Discovered Club. And over the past decade, we’ve seen powerful personal testimonies from women who have been told autism was ‘just for men’. As one mother said: ‘I kept asking to have her evaluated, but with her being a girl, it was even less likely that the paediatrician would refer us. I remember her saying that this is usually a boys’ thing and she is only a little different.’ Now the mountain is a bit easier to climb. All in all, the newly diagnosed women reveal a flaw in our understanding of what autism is, fundamentally.
Why and how were autistic women sidelined? On one level, a fixed belief in the maleness of autism was so strong that some researchers hunted for a ‘female protective effect’ or blamed autism on an ‘extreme male brain’. On top of that, gendered socialisation has driven autistic women underground, causing them to disguise and internalise their struggles, and depriving them of the help they need.
Let’s start with bias in the research itself. A 2021 survey found that, in more than 1,400 studies investigating autistic brains, more than 30 per cent studied only males. My own 2024 survey reported that, of more than 100 studies on brain models of autism, nearly 70 per cent tested only males (or included just one or two females). Of more than 4,000 autistic participants in these studies, fewer than 10 per cent were female. Early versions of ‘big data sets’, where results were combined to increase their scale and scope, also highlight the male spotlight problem. The first report from the Autism Brain Imaging Data Exchange (ABIDE-I), launched in 2012 and containing fMRI brain scan and other data from more than 539 diagnosed individuals, reported only on analyses of 360 males. Scrutiny of the full ABIDE cohort, moreover, revealed that 485 (88 per cent) of the data sets were from males and 25 per cent of the sites invited to participate had excluded females ‘by design’. When it comes to finding an explanation for autism, maleness was the only place many researchers looked.
How did this happen? ‘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,’ Noam Chomsky said back in 1993. And all along, autism researchers have suffered from this ‘streetlight’ effect, falsely shining their light only on males.
The film Rain Man provided an instant stereotype of autism that powerfully influenced public consciousness
Yet being male has never been part of any autism diagnosis in the formal sense. In 1943, Leo Kanner, one of the so-called ‘fathers of autism’, described 11 cases of what he called ‘early infantile autism’ – eight were boys, three were girls. But as cases of ‘Kanner’s syndrome’ accumulated, epidemiological surveys reported far greater prevalence in boys. Hans Asperger, writing at the same time as Kanner, made more of the maleness of the condition, referring to ‘an extreme variant of male intelligence’. His seminal paper focused on just four boys.
When the profile of autism was broadened in the 1980s, diagnoses increased so much that there was talk of an epidemic. Yet female diagnoses remained low, with some reporting male-female ratios of just 6-7 per cent. The film Rain Man (1988), with Dustin Hoffman depicting an autistic savant with both extraordinary skills and bewildering behavioural problems, provided an instant stereotype of autism that powerfully influenced public consciousness of the condition. The picture of autism just didn’t include girls.
Typical of self-fulfilling prophecies, the male spotlight was switched on. Committees of diagnosticians painstakingly drew up checklists of commonly occurring signs and symptoms, generating lengthy profiles of ‘typical’ autistic behaviour. So-called ‘gold standard’ tests became near compulsory, not only for a universally accepted diagnosis, but also for inclusion in research studies. And embedded in these assessment schedules was a pre-existing, circular problem. They were all derived from close attention to individuals who had already been diagnosed, the majority of whom were male. Parents might be asked about unusually intense, nerdy ‘boy-type’ interests: historical facts, calendar dates, makes of cars. Clinicians were asked to note ‘loner’ type behaviour: lack of eye contact, failure to engage with others. No tick boxes for more socially normal ‘girl-type’ interests, such as Barbie dolls or ponies, or red flags for apparently normal social exchanges that might, on closer analysis, come across as slightly stilted, even scripted – all hallmarks of autistic girls.
It was not until the beginning of the 21st century that a wave of powerful personal testimonies from late-diagnosed autistic women eventually raised awareness of this gap in the autism story. Autistic women had found their voice and made clear their omission was not just a matter of not being truly autistic. Books with telling titles such as Odd Girl Out: An Autistic Woman in a Neurotypical World (2017) by Laura James, or Autism in Heels: The Untold Story of a Female Life on the Spectrum (2018) by Jennifer Cook O’Toole revealed lifelong struggles as an outsider in a bewildering, highly socialised, world. There were stories of being ostracised, bullied and ‘othered’, of being terrified to be spotted as different, of struggling fruitlessly to understand the invisible rules of social engagement that allowed others to effortlessly understand each other, form friendship groups and be popular. And of constantly being rebuffed when seeking help – ‘girls don’t get autism’, ‘you can’t be autistic, you make eye contact’, and ‘you don’t look autistic’. Stories of parents being told their daughters were ‘just shy’, and their adult selves diagnosed with borderline personality disorder, or generalised anxiety disorder, or depression, or eating disorders – clinicians missing the fundamental diagnosis: autism.
In the wake of all this, research woke up as well, offering a much-needed framework for sex and gender differences. Scientists began proactively recruiting females into their research cohorts, rather than avoiding them altogether or statistically screening them out as part of the ‘noise’ in their data. They were pressed to design research protocols that would actively identify aspects of autism that varied between males and females. It had become clear that there was a need to move away from the ‘less than’ approach based on a male template, with autistic females described as ‘less’ socially impaired than autistic males, or ‘less’ likely to show repetitive behaviours or highly focused interests than males. Researchers needed to acknowledge that the male spotlight problem in autism research meant that, when it came to autistic females, they had been looking in the wrong place and asking the wrong questions.
The camouflager might come across as extremely shy. The masquerader might come across as an extravert
Are autistic females really different? The most startling answer concerns the very nature of autism, supposedly signalled by intentional social avoidance and elective isolation. Once there was a closer look at females on the spectrum, a core aspect of their social behaviour was found to be, conversely, an intense focus on finding ways to ensure social contact with others, of obsessively trying to find ways to fit in, to belong. Part of this was a powerful fear of being spotted as different, resulting in a lifelong pattern of exhaustive and exhausting attempts at camouflage, of devising ways to blend in, of ‘putting on their best normal’. This drive might entail closely watching facial expressions or gestures, mimicking styles of speech, or even generating scripts by listening to others’ verbal social exchanges and repetitively rehearsing them in secret. Interviewed for my new book, one late-diagnosed woman explained:
When I was a young child, I went through a phase where I was terrified of going first in any group activity (and would have meltdowns if I was asked to do so). In hindsight, I was terrified at the prospect of having to demonstrate a behaviour without first being able to observe and copy an ‘acceptable’ model of that behaviour.
Their painful struggles might be disguised by creating many different identities or masks that they could hide behind, masks that they hoped would allow them to join the gang, to be accepted as part of a social group. The camouflager might come across as extremely shy or quiet, never putting themselves forward, the girl in the corner, quietly tucking herself away from view. The masquerader, on the other hand, might come across as an extravert, or the performer.
‘I had been the geek, the book lover, the dancer, the academic, the sports fanatic, the food guru, the makeup expert. I had been whoever I needed to be,’ explains Katy Wells in her book The Painted Clown (2021). ‘Whichever role I had played, had depended on who I had been with. My personas changed so readily. My survival had depended on my ability to adapt, to perform… to mask.’
In the unfolding story of autism, these behaviours had never served as any kind of red flag, and so these camouflaging chameleons, as they have been dubbed, remained unnoticed and overlooked – hiding in plain sight.
Sadly, these undercover activities did not lead to a happy and successful life, filled with contented membership of multiple social groups. Once clinicians and researchers started to pay attention, they found that camouflaging behaviour was linked to high levels of depression and anxiety, suicidal ideation and self-harm. Personal testimonies describe years of mental health crises, associated with multiple misdiagnoses, inappropriate treatment and medication, an ‘alphabet soup of diagnoses’, until the pieces fell into place and an autism assessment was finally suggested.
There is now a move to identify camouflaging behaviour, to spot a possible disconnect between someone’s outward appearance of coping and their inner signs of struggle – or even, in a break with traditional autism assessments, of actually asking the people concerned if and how they struggled with social situations. Did they consciously try to maintain eye contact for a certain amount of time? Did they make a note of social gestures and other non-verbal cues and then practise them in front of a mirror? Camouflaging, by definition, is hard to spot, but at least now practitioners and researchers who might help are looking.
The new insights have triggered a reset in autism neuroscience research. In the early part of this century, there was an understandable focus on investigating atypical activity in the so-called social brain. This is a network of brain structures underpinning those skills needed to connect with other people, such as understanding what they might be thinking, getting pleasure from successful social interchanges or finding ways to avoid situations that might lead to social rejection. The early conclusions from such research, when applied to autism, was that it was associated with atypically low levels of activity in the social brain showing, for example, reduced coding of social cues, or an underactive social reward system, with limited signs of affective responsivity to social experiences, negative or positive. This fitted neatly with the accepted view of autistic individuals as asocial loners. But, as we know, these conclusions were based on an era of ‘men-only’ studies. What happened when you started testing women too? Evidence of an over-active social brain emerged, indicating high levels of anxious self-monitoring in social situations and powerful affective responses to social rejection. A very different picture.
This raises the idea that autistic women have been missed not because they generally show milder versions of the fundamental signs of autism, as found in males, or because they are better at hiding such signs, but because their autism presents in a different way. Far from avoiding social interaction, it appears they are powerfully driven to seek it. However, in common with the traditional view of autism, they appear to lack the necessary skill-set to successfully achieve such interaction. They have the motivation, but not the means.
Perhaps a different type of autism, but autism nonetheless. Here, there is a powerful drive for social contact, so strong that elaborate (and ultimately damaging) camouflaging schema are developed to disguise any clues that these masqueraders might not fit into the social groups they seek to join. Such camouflaging behaviour makes the underlying struggles harder to spot, but they are there, and the clinical guidelines and diagnostic definitions need to be revised to reflect this.
The evidence is that the autism community itself is characterised by high levels of gender variance
There has been a suggestion that we need to move away from the all-embracing concept characterised by the spectrum approach, and re-introduce the notion of subtypes, such as Type 1 and Type 2 autism, along the lines of disorders such as diabetes. Should these distinctions be couched in terms of a male autism phenotype and a female autism phenotype, given that most of the ‘Kanners’ are males and most of the ‘chameleons’ are female?
Probably not. There are some females who present with Kanner-type autism, as well as males who present with camouflaging behaviours. We should avoid repeating past mistakes arising from the inaccurate and simplistic grouping of so many aspects of human brains and behaviour into allegedly distinct ‘male’ and ‘female’ categories, especially in the face of evidence that the autism community itself is characterised by high levels of gender variance.
Some have suggested that chameleon-type autism is so different, it does not really fit on the spectrum at all. But that overlooks the core defining feature of autism, a distinctive difficulty with the fundamental human drive to be social, involved with the same brain networks. This can be harnessed as both a theoretical and an applied framework by attempts to understand, and ameliorate if necessary, the many manifestations of autism. Instead of finding a different home for an emerging group who don’t fit the traditional pattern, we must widen our understanding of autism yet again.
Perhaps one of the most important lessons is that this story would not have emerged so effectively if autistic women had not found their voices, and if insightful autism researchers had not listened to them. The importance of formally including and understanding ‘lived experience’ in all aspects of autism research is being acknowledged; the autism community is now leading this addition of participatory research when investigating atypical behaviour. Autistic individuals are being included as partners in all aspects of the research process, from design and recruitment through to interpretation and discussion.
Incorporating this unique type of expertise could bring equal benefits to other areas of atypical behaviour. Evidence of male bias in autism diagnosis raises a general question about the reliability of psychiatric categories as a whole. The fifth edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (2013) is several inches thick and runs to approximately 1,000 pages; psychiatric diagnosis is not an exact, unbiased science. This matters. The labels generated by consulting such tomes have real-life consequences for ensuring access to support and understanding. They also have very significant consequences both for research programmes and the development of therapeutic practice.
It is beginning to emerge, for example, that significant numbers of patients with eating disorders are autistic, and that they form a group that is qualitatively and quantitatively different from eating-disordered patients who are not autistic. So, understanding this overlap, and being able to correctly identify the characteristics of the two groups, should be better enabled by the diagnostic process.
Moreover, no matter what the presentation, an eventual diagnosis of autism appears to have a powerfully positive impact on the lives and self-image of late-diagnosed females. A common theme in many personal testimonies is the relief at ‘finally finding my tribe’, with exclamations that ‘my life finally made sense’ or ‘I’m not a broken neurotypical. I’m a healthy autistic me!’ So, however flawed the definition of autism currently is, it represents a real and recognisable community to a group for whom ‘belonging’ is the prime driver of their lives.
What does the discovery of autism’s missing women tell us about wider issues of gendered socialisation and its uneven impact on females and males? ‘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,’ wrote Joanne Limburg in Letters to My Weird Sisters (2021).
In trying to understand the ‘why’ of camouflaging, we need to discover what forces have driven a considerable number of autistic individuals, many of them women, to spend their developing years struggling to hide their autism. Why should a sub-set of the autistic population be apparently compelled to do everything they can to be part of a social group, even though their efforts result in physical and mental exhaustion and distress, and even render them vulnerable to abusive and damaging relationships?
Is it relevant that most of these individuals are female? Are we looking at the playing out of a biological script, genetically and hormonally determined, that drives females more powerfully than males to prioritise social group membership or ‘belongingness’ above many other aspects of psychological wellbeing? Or are we looking at the impact of a culturally determined social training regime, encouraging low-profile compliance and conformity, careful camouflaging of any unusual traits, or compulsive internalising of any socially disruptive traits? Or are these alternatives inextricably entangled? As is often the case when studying human behaviour, sometimes it is the exceptions that can offer insights into so-called neurotypical rules.
There is an ironic footnote here. Some critics of neuroscience research into gender differences express concern that focusing solely on biological sex as the source of such differences might support negative sexist stereotyping. On the other side of the coin, the alleged ‘maleness’ of autism is often cited as proof that there are indeed irrefutable (and unchallengeable) differences between the brains of women and the brains of men, so biological sex must be the source of such differences. The first group diminishes the concept of sex differences in the brain. The second group embraces the maleness of a brain-based condition such as autism as proof that the ‘female brain’ and the ‘male brain’ are real. At the nexus of these debates is autism’s male spotlight, which has cast a long shadow on our culture and consumed so much light we’ve been unable to fully focus on the whole picture of autism.
Their autism may itself be disguised by other conditions such as self-harm or eating disorders
And, finally, the ‘lost girls’ thread goes back further than we thought. It has emerged that the so-called fathers of autism were actually trumped by a Russian female psychiatrist, Grunya Sukhareva, who published finely detailed descriptions of autistic children in the 1920s. She quite explicitly drew comparisons between boys with autism and girls with autism. Her work was broadly overlooked until just two years ago. Yet another ‘missing woman’!
We now know that autistic women have been missing from autism headcounts because no-one was looking for them (the male spotlight problem) and because they were in disguise (the camouflaging problem). What next? How can we ensure that no-one goes missing again, and help these newer members of the autism community when they realise who they are?
We must challenge the gatekeepers, such as the teachers who believe ‘only boys have autism’, the clinicians who think ‘girls don’t get autism’, the diagnosticians who set up boy-based templates for defining autistic behaviour, the researchers who assume that their men-only findings will suffice as explanations for autism as a whole. We must raise awareness that ‘autism is not just for males anymore’ and that the ‘white, nerdy, male’ stereotypes of autism (both professional and popular) are just a subtype of a much larger group.
Autism professionals and support groups need to be aware that the lived experiences of chameleon-type autists are different from those of the Kanner group. Their obsessive need to belong at any cost makes them especially vulnerable to the type of bullying that is based on social ostracism and to abusive relationships. Their autism may itself be disguised by other conditions such as self-harm or eating disorders, which clinicians should be aware of. Therapeutic support must be geared to help the camouflagers and masqueraders, as well.
Finally, the psychologist Damian Milton has identified a double empathy problem, the mutual misunderstanding between autistic and neurotypical individuals. The bewilderment experienced by autistic individuals in the social world of neurotypicals is matched by neurotypical lack of awareness of what it is like to experience the world so differently and how hard it can be to understand the social rules of engagement that govern successful and rewarding interactions with each other. Efforts to increase neurotypical understanding of autism now need to embrace autistic sisters as well as brothers for a broader, more nuanced view.
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.
