Understanding autism in women and girls

CNN

02-04-2025

Summary
Autism diagnosis often misses girls, with up to 80% receiving incorrect diagnoses first, research suggests.
Diagnostic criteria developed based on male symptoms often overlook girls, brain imaging expert Gina Rippon says.
Girls with autism often internalize problems and mask their difficulties, unlike boys who act out.
Nearly 70% of autism studies tested only men or included very few women, according to a 2024 review.
Sensory sensitivity, recently added to diagnostic criteria, may help identify autism in girls. Researchers historically have viewed autism as a distinctly 'male' neurotype.
But why? Is it because they only paid attention to symptoms in boys, and girls haven't been screened properly? Boys are 10 times more likely than girls to be referred for autism assessments, a 2020 review showed, and a 2023 study suggests that up to 80% of girls and women may receive a diagnosis of social anxiety, eating disorder or borderline personality disorder before being accurately diagnosed as autistic.
These biases and shortcomings are the subject of 'Off the Spectrum: Why the Science of Autism Has Failed Women and Girls,' a new book by brain imaging expert Gina Rippon.
Rippon, professor emeritus of cognitive neuroimaging at the Aston Brain Centre in Birmingham, England, investigates how and why scientists and clinicians have systematically underestimated and overlooked autism in women and girls.
In a 2024 review, Rippon found of the more than 120 studies testing brain models of autism that she examined, nearly 70% of the studies only tested men or included very few women. She noted that less than 10% of the 4,000 participants in those studies were women.
Rippon said she was startled to discover the extent to which she and her colleagues had fundamentally misunderstood the nature of autism in girls and women.
CNN recently talked with Rippon about autism in girls and women, the challenges of current diagnostics, and how medical professionals can think differently about screening without bias.
This conversation has been lightly edited and condensed for clarity.
CNN: What inspired you to investigate autism in girls?
Gina Rippon: There was this very strong belief up until recently that autism was a male problem. As a result, a big industry grew around autism diagnosis to reliably indicate whether a child had autism. But they were only looking at the kind of behavior that was characteristic of boys. If girls came along with similarly disordered behavior, the idea that it might be autism just didn't emerge.
There were so-called 'gold-standard' tests, but because the tests were based on boys, girls would be screened out. For a neuroscientist like me who wanted to look at autism in females, I wouldn't be able to find any females who had been diagnosed as autistic. It got embedded in our consciousness, 'OK, this is a male problem, so we probably better just look at males.'
CNN: How did the system get so biased?
Rippon: I like to say the diagnostic dice were loaded from the start. There is no biomarker for autism — there's not a handy X-ray or some physical test we can use to diagnose autism. Instead, there are a huge array of different behaviors which, over the years, have (been) identified as characteristic of autistic children. (But) it's all based on what it looks like in boys.
Kevin Pelphrey, one of the top autism researchers in the world, has two autistic children — one girl, one boy. His wife describes how difficult it was for them to get their daughter diagnosed. You would think they would know what they were talking about, yet their daughter's diagnosis was dismissed across the board. Experts would say, 'She's shy, she'll grow out of it.'
CNN: Why is it so difficult for experts to identify autism in girls?
Rippon: There's the classic confirmation bias, which is the tendency to interpret new evidence as a confirmation of one's existing beliefs.
Researchers have presented identical hypothetical scenarios to teachers, saying, 'This child presents with these kinds of issues in the classroom, so do you think this child might be autistic? Do you think this child might need special support?' Teachers are much more likely to say yes to the notion that the child was autistic and needed support if the child was named Jack than if the child was named Chloe.
Behavioral differences in autistic children emerge early on. Those are times when teachers who have broad experience of a much wider range of children should be able to say, 'This kind of behavior is unusual. I think we should take it further.' Instead, if behaviors are unusual and it's a boy, it's autism, but if behaviors are unusual and it's a girl, she's shy, socially anxious, and people might say, 'she'll grow out of it.'
Secondly, autism presents differently in girls versus boys. Girls who are distressed in some way very often internalize their problems. They become withdrawn and shy, stand in the corner, don't engage with other children. If you've got children who are shy and quiet and stand quietly in the corner, you aren't going to think there's a problem and maybe you'll even move on. If you've got children who are acting out by banging their heads against a desk or kicking, which is more characteristic of boys, those are the kids you're going to look at more closely.
The third layer is that there is clear evidence that girls try to camouflage or disguise or mask their problems. That happens very early on, at age 4 or 5. If you find the right way of asking them questions, they will say, 'Other people in the class think I'm weird. I try and find out why they think I'm weird, and I try and behave not weird.' I call these kids chameleons.
This is nothing new. In the 1980s, a researcher named Dr. Lorna Wing, who was partially responsible for broadening the notion of autism, said, 'Maybe girls are just better at disguising their problems,' and 'Maybe girls are taught to behave better earlier on.' It's not socially acceptable for girls to act out, so they don't.
CNN: What can a diagnosis mean to a young woman who has been struggling?
Rippon: All the women I spoke to said their first and most powerful reaction on getting a diagnosis of autism was a sense of relief, because it suddenly made so much sense of their lives. For older women, it was very often then a sense of regret, how different their lives would've been if they'd known.
Particularly the girls who are so desperate to belong, what struck me is how much at odds this is from the view of autism as an aloofness — as if autistic individuals aren't interested in social contact. With autistic females, it's almost the reverse. They're desperate for social contact, but they lack what you might call social instinct, knowing how to behave in social situations.
One of the girls I talked to for my book told me it's a bit like how people who are deaf from birth wouldn't understand that there's this kind of invisible something that is the sound of words, which people use to communicate with each other. Autistic girls could be described as deaf to the language of social behavior, so they don't understand how you stand properly or maintain eye contact, or that you aren't supposed to go on about your favorite subject for an hour. For these girls, a diagnosis can be very freeing and validating.
CNN: How can experts learn to diagnose girls at a younger age?
Rippon: One thing that has struck me is that the notion of hypersensitivity to sensory issues such as scratchy clothes, bright lights, smells and so on, is more characteristic of girls on the spectrum than boys. And that's only just come into the diagnosis. It was in the latest edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5-TR).Although sensory issues have been very characteristic of autism as a whole — and very often there are reports of autistic children hating loud noises or bright lights or whatever — it wasn't a diagnostic characteristic until quite recently. Having this in the diagnostic criteria might help.
Raising awareness and accepting that autistic children of both sexes should be allowed special accommodations at school, such as taking tests in a separate room or wearing headphones. That's very important.
For autistic girls like chameleons, who might be hypersensitive to what they perceive as social rejection, it's also important to teach kindness to all children. Some of the saddest interviews I had were the ones with young girls who were hyperaware that people thought they were weird and odd.
CNN: What role can medicine play here?
Rippon: I'm not a fan of pharmaceutical solutions for young children, partly because it is a time at which our brains are hugely plastic. At the same time, sleep disturbances and gastrointestinal disorders are characteristic among autistic kids, and if left untreated these (issues) can interfere with social activities.
There's also a lot about autism you can't treat. A lot of the behavioral difficulties that autistic individuals have are side effects of their autism; they get hugely anxious because they don't know how to deal with social situations, not because they need anxiety medication.
CNN: How important is it to hear from people with autism?
Rippon: It's critical for researchers to speak to autistic people and ask, 'What is it like to be you?' That perspective is invaluable. There's a big movement for what is called inclusivity or participatory research, where autistic people become part of the research team.
They advise what kind of questions to ask, they advise how you might interpret the answers you're getting. There's a video I recommend called 'Here Come the Girls,' and in it, autistic women basically say, 'We are autistic, and this is what it's like for us.' I think that inclusivity is the future.
CNN: If we take away one thing from your work, what should it be?
Rippon: Autism doesn't only affect boys; girls can be autistic, too. The world has not accommodated autistic girls until the last decade or so. Thankfully, that's changing. Here come the girls.