Science Friday - Autism Rates Appear To Be Even Across Sexes. Diagnosis Is Not

Episode Date: February 21, 2026

There’s a long-held idea that autism is more prevalent in boys than girls—the CDC says it’s three times as common. But a growing body of research suggests the reality is more complicated. In a n...ew study, researchers tracked autism diagnoses in millions of Swedish people born from 1985 to 2022. They found that the prevalence of autism is actually pretty even across the sexes, but people with “female” stamped on their birth certificate are often diagnosed later in life.  Host Flora Lichtman speaks with epidemiologist Caroline Fyfe about what this study teaches us about the prevalence of autism. Then, psychology researcher Rachel Moseley, an autistic woman herself, shares how late and missed diagnoses can affect autistic people. Guests: Dr. Caroline Fyfe is an epidemiologist at the University of Edinburgh who studied sex differences in autism diagnoses.  Dr. Rachel Moseley is a researcher in psychology at Bournemouth University in the UK, studying the experiences of autistic adults.Transcripts for each episode are available within 1-3 days at sciencefriday.com. Subscribe to this podcast. Plus, to stay updated on all things science, sign up for Science Friday's newsletters.

Transcript
Discussion (0)
Starting point is 00:00:02 Hey, I'm Flora Lichtenen, and you're listening to Science Friday. There's a long-held idea that autism is more prevalent in boys than girls, like three times more common, according to the CDC. But a growing body of research suggests the story is more complicated. In a new study, researchers tracked autism diagnoses in millions of Swedish people born from 1985 to 2022. And here's what they found. The prevalence of autism is actually pretty even.
Starting point is 00:00:32 across the sexes, but people with female stamped on their birth certificate are often diagnosed later in life. The study tracked sex assigned at birth, which is why you'll hear us use that language. Here to give us a rundown on the study is epidemiologist Dr. Caroline Fife, the lead author who did the research at the Karolinska Institute in Sweden. Caroline, thanks for being here. Thank you. What made you want to look into this? So we have been looking at sex differences in autism, and we wanted to look at the... influence of time scale because what we had noticed was that over time autism diagnosis had increased markedly but the sex difference seemed to remain at about three to one and so we were interested in
Starting point is 00:01:17 why that was occurring and whether that had something to do with either the age children were diagnosed the period in time at which they were diagnosed or was it something to do with each generation so the birth cohort. And what did you find? What we found was that the sex difference hadn't changed in children under 10 over that time. It had fluctuated between about 2.5 and 4 boys for every girl diagnosed, but it hadn't actually changed. But when we looked at children over the age of 10 and adults, the sex difference had gone down markedly over that same period. And in particular, we found that there was an increase in the number of girls diagnosed during adolescence.
Starting point is 00:02:08 Wow. So the diagnoses catch up for girls as they get older. Exactly so. So the average age overall is 10 to 14 for boys and it's 15 to 19 for girls. You start to see girls catching up and particularly later adolescence between the ages of 15 to 19. you see this rapid catch-hub. By the age of 20, it was one-to-one. So there was as many boys as girls diagnosed. You know, we know that research suggests that autistic people are more likely to be trans. Were you able to account for trans people or non-binary people in this study?
Starting point is 00:02:45 No, we weren't. There's potential in the Swedish registers to do that. So that is something that could happen in the future. But we didn't do it for this study. You know, I know you're not a clinician and your focus is on, so the epidemiology, but from your point of view, does this study suggest that diagnostic criteria needs to change or that we need to understand autism differently? Like, what flags does it raise for you? I think it does raise flags about the diagnostic criteria because boys have always been diagnosed with autism at higher rates and. girls, the research has been done mainly on boys, including sort of all aspects of it, so sort of the genetics as well as the behavioural, and that may have influenced how these criteria
Starting point is 00:03:38 were developed and how they're interpreted towards male photopist view on autism. So perhaps a good idea would be to try and extend that and to understand more about how autism manifests in girls. I mean, medical sexism. Tell us all right. oldest time. Indeed. Dr. Caroline Fife is an epidemiologist and the lead author on this study, she did the research at the Karolinska Institute in Sweden. Caroline, thanks for being with us. Thank you very much, haven't you? This study brings up a lot of questions, like what accounts for this discrepancy in the timing
Starting point is 00:04:15 of diagnoses and how does a missed or late diagnosis play out for people? A warning that the answers can get heavy. Dr. Rachel Mosley is a researcher in psychology at Bournemouth University in the UK who studies the experiences of autistic adults, especially women. And she's the perfect person to give us insight because not only does she study this, she's lived it herself. She was diagnosed as autistic in her late 20s. Rachel, welcome to Science Friday. Oh, thank you so much for having me here. What do you make of this study we were just talking about?
Starting point is 00:04:49 It's wonderful to see because it confirms something that, Autism researchers, and of course autistic people have known for a very long time. And that is that autism is markedly underdiagnosed in people assigned female at birth. So we've known that for a number of years and there have been other studies that really back this up. But it's taking such a long time for that message to kind of go through. So it's just great to see more and more evidence really showing us that, yes, women, girls, people assigned female at birth, they're out there. You know, as we said earlier, autism is reported to be three times more common in boys than girls. Why has that been the prevailing wisdom?
Starting point is 00:05:37 Well, there's a number of reasons. When autism ended up in the diagnostic manuals, it was kind of based on these descriptions of male cases. So, for instance, people would be diagnosed if they showed a very stereotypical presentation, they would have to have very delayed or absent language, they would have to have differences that were evident from very, very early on. And this flies in the face of what we now know about how autism presents in women, girls, people assign female at birth. Tell me more about that. Yeah.
Starting point is 00:06:13 Yeah, we know that the difference between autistic boys and non-autistic boys is really obvious from early on, and it remains obvious throughout their childhood. What we see in girls, in contrast, is that autistic girls are much closer to their non-autistic peers in terms of the way they present their kind of outward social appearance. So they don't seem very different in childhood. But what we see in girls is that the size of that difference grows. So by the time they're in late childhood, early adolescence, the difference between them and their peers is much more stark. Do we know why that's the case?
Starting point is 00:06:59 One suggestion is that autistic girls are typically, they may be slightly better at masking their autism. You don't know that you're masking necessarily. You just know that if you behave in a certain way, you are less likely to be bullied or rejected. what's really important is if you look at their social understanding, they've got equal difficulties as autistic boys. But outwardly, they seem more proficient. And the reason that things will kind of start emerging more as children get older is that the social world is becoming increasingly more complicated.
Starting point is 00:07:39 You've got puberty and hormones. You've got social relationships becoming a lot more complicated. So all things that put greater strain on autistic girls and hence their differences start to stand out more. I mean, besides symptoms showing up later, are the signs themselves or the symptoms themselves different? Yes, yes, they are. Their autism does often look slightly different. So, for instance, they might use eye contact slightly more than men. their friendships look more typical to non-autistic children, so they are more likely to kind of be on the fringe of the social group, whereas autistic boys are more likely to be explicitly
Starting point is 00:08:27 rejected. And their interests likewise seem to be a little bit different in the way they present than you see males. So you might have the little boy who is fascinated in different. designs of tomato soup cans over the years, something like that. Whereas in girls, what you're more likely to see interests that are relational, they are about people, programs, celebrities, it will mark out that they're autistic, but doesn't stand out. It just doesn't line up with what people know or believe they know about autism. the girls don't get kind of flagged up as developing differently. Let's put you in charge. If you were rewriting the diagnostics for autism, where would you
Starting point is 00:09:23 begin? Gosh, where do I start? So I want to say that researchers, clinicians have already done a very good job at redesigning these diagnostic criteria. They are massively improved to where they were before. So we now recognize masking, for instance. But I think one thing I would do, since you're giving me a wonderful power here where I can redesign this, I think it's so important that the diagnostic criteria are updated to reflect what we now know about neurodiversity. So the way we diagnose autism and the way we tell someone about their autism really matters. And of course, the diagnostic criteria now, we're all about symptoms. They're all about disorder. And we know that if we use a strengths-based approach and we explain, you know, more about difference. And these are the
Starting point is 00:10:25 strengths you have as an autistic person. Yeah, you do have these areas of challenge, but you have these strengths as well. And everyone has areas of challenge. There are things that autistic people are better at than non-autistic people. So it's, I would like to. to redesign those diagnostic criteria to be much more neurodiversity affirmative. Well, that is the perfect segue, Rachel, because coming up after the break, we're going to ask you about how late and misdiagnoses affect people's lives. Yeah. Does that sound okay?
Starting point is 00:11:00 Absolutely. Okay. Don't go away. All right, let's dive in. So how does being diagnosed later in life with autism or not being diagnosed at all, What is the effect on people? I'd say across studies, research is showing us that being missed for diagnosis has a profoundly negative impact on people. So the people I typically hear from in my research and the other studies document, people who grow up undiagnosed, they grow up knowing they're different in some way. You know you're different, but you don't have an explanation for it.
Starting point is 00:11:53 You struggle at school, you struggle in relationships, you struggle in employment, you struggle across your life, you're vulnerable to exploitation, abuse, you have complex, treatment resistant, physical and mental illness. But you don't have an explanation for any of this, apart from the fact that you have to find an explanation. So it's you. You're stupid or weak or broken or weird. So you blame yourself and other people blame you for being different and not being able to do what everyone else can do. And really, really sadly, we find that being missed for diagnosis or being late diagnosed is associated with higher suicide rates. So autistic people themselves link being missed for diagnosis with their suicidality. And in fact, they actually identify
Starting point is 00:12:53 that improving diagnosis and particularly picking up autism in girls and women is a way to prevent suicide. Rachel, are you comfortable talking about your own story? Yeah, absolutely. What was your diagnosis experience? When were you diagnosed and how? Yeah, so I was diagnosed when I was 28. And it's a bit of a funny and embarrassing story, really.
Starting point is 00:13:21 So I was taken to many, many clinicians when I was a child. I didn't make eye contact. I appeared to be deaf, which is a very common thing when autistic children don't respond to their name, for instance, and they don't respond to other people. So there were signs from when I was less than a year old. My mum knew that something was different. And I was taken to many, many specialists throughout my child.
Starting point is 00:13:51 and autism was the working diagnosis at one point. And so they didn't put me forward for an assessment. And I didn't know what the working diagnosis had been. So I go off, grow up, do psychology at university, and I'm fascinated by autism. And I have a huge degree of empathy for people who struggle to fit in, who have all the struggles of autistic people. So I do my PhD in autism.
Starting point is 00:14:24 I learn how to diagnose people as autistic. I still have no idea that I was considered to be autistic. It's not until I know. So you're studying it and you don't know. I know. This is what I mean. It's so embarrassing. No, it's not.
Starting point is 00:14:39 It's not. Well, it was only when I started studying autism and girls and women. And my mom just happened to say, Oh, you know that, you know, you know, that autism was the working diagnosis for you when you were a child. And it was like a light bulb moment. I now knew about autism and girls and women. I sought a private diagnosis. I got diagnosed.
Starting point is 00:15:09 And when I told people, they were like, yeah, yeah, I know. We knew. What did it mean for you to get that diagnosis? You just gave a big exhale. Was it important for you to have that diagnosis? Very much, very much. It was important for me and also for my family. So I, like I mentioned, other autistic people in research,
Starting point is 00:15:36 I grew up believing that there was fundamentally something deeply bad and rotten about myself. and I didn't understand what, and I had various hypotheses over the years. So, for instance, at one point, I knew I was bad, and I knew that psychopaths in the movies are, you know, the bad guys. So I thought I must be a psychopath. No, massively, terribly negative view to have of yourself, and I knew that I must hide this. I must not let everyone else know how bad I am. And from the parent's side, you often hear and you're told again and again, that you're just not trying hard enough. I felt like a kind of cancer in my family.
Starting point is 00:16:23 I felt terrible. And so you don't have an explanation for that. You just carry the blame. So getting a diagnosis is like vindication. It's like a verdict of not guilty. Thank you for sharing that, Rachel. That's really profound. And then it makes clear how important research, like the research we've been talking about, is for people's lives.
Starting point is 00:16:56 Very much so. And it comes so late for a lot of autistic women, it comes too late for some. And so it's so important that the world stops seeing autism as a deficit and instead sees that autistic people. that autistic people have always been here and they always will be. It's a natural type of neurological variety. And autistic people have made wonderful contributions and they will continue to do so. But society has to stop breaking them. Dr. Rachel Mosley is a researcher in psychology at Bournemouth University in the UK. Rachel, thank you so much for joining me today. It was an immense pleasure. Thank you so much for having me. This episode was produced by Rasha
Starting point is 00:17:48 Aredi. Special thanks to Ira Kramer for consulting on this episode. We'll catch you next time. I'm Flora Lichtman.

There aren't comments yet for this episode. Click on any sentence in the transcript to leave a comment.