The Gender diagnosis discrepancy thread

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Historically, researchers have thought that autism affects mostly boys and men. But is that truly because they have the neurodevelopmental condition more often than women, or could something be going on with diagnoses? A study published February 4 in the journal BMJ indicates that autism incidence among more than 2.7 million female and male participants in Sweden is similar, but that female individuals are diagnosed at older ages than their male counterparts.

“Our findings suggest that the gender difference in autism prevalence is much lower than previously thought, due to women and girls being underdiagnosed or diagnosed late,” lead author Caroline Fyfe, a public health researcher at the University of Edinburgh in Scotland, tells the Guardian’s Anna Bawden. The work demonstrates a need to figure out why diagnoses in female individuals are often delayed, she and her colleagues write in the paper.

Autism prevalence, particularly among girls and women, has been rising over the past couple of decades, likely because of a better understanding of the disorder and therefore a better ability to diagnose it. But no large population-based study has looked at the male-to-female ratio to disentangle factors affecting autism incidence rates, such as age at diagnosis, the study authors write.

So, Fyfe and her colleagues investigated autism incidence among millions of people born in Sweden between 1985 and 2020, who were tracked up to 2022. About 78,500 participants, or 2.8 percent of the entire group, were diagnosed within that timeframe, at a median age of around 14.

All age groups, organized in five-year cohorts, showed the highest rates of autism diagnoses during the period from 2020 to 2022, the team found. In male participants, diagnoses peaked at 10 to 14 years old, while for female participants, they peaked at 15 to 19 years old. Though male individuals were more likely to be diagnosed as children than female individuals, girls “caught up” as adolescents. By 20 years old, the male-to-female ratio was close to 1-to-1, and the researchers estimate that it should be equal by that age by 2024.

“This is a really rigid, perhaps classically Scandinavian-type study, where the data is amazing data, collected over time, valid, reliable, et cetera,” Gina Rippon, a neurobiologist at Aston University in England who wasn’t involved in the new work, tells Scientific American’s Jackie Flynn Mogensen.

James McPartland, a child psychologist and director of the Yale Developmental Disabilities Clinic who wasn’t involved in the study, tells Medscape Medical News’ Tara Haelle that he found the study striking because sex differences in autism incidence have been “pretty consistent across countries and cultures, and even across different diagnostic criteria as they’ve changed over time.”

The findings didn’t surprise some experts, including Diana Schendel, a public health researcher at the A.J. Drexel Autism Institute who didn’t participate in the research. “We’ve seen that same kind of pattern, in terms of age-specific rates between males and females, in Denmark,” she tells MedPage Today’s Judy George, but also notes that no such study has been done in the United States.

What might be behind the later diagnosis ages in women and girls? Anne Cary, a disability advocate and director and co-founder of Autistic and/or ADHD Adults of Colorado who wasn’t involved in the study, notes that the skewed male-to-female incidence rate in childhood might be misleading.

“It could be that the onset of autistic traits is delayed in females; if that is the case, it may be unreasonable to assume that autism is being missed in young girls,” Cary writes in an accompanying BMJ editorial. “It might, however, suggest that the assessment tools contain sex biases and need reworking.”

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.

It has do a lot with misogyny. Girls aren't usually referred to doctors and when they are, it is often dismissed as whining, hormones or because of their social life.

Girls who are diagnosed early have more severe presentations of autism while girls diagnosed later have milder presentations or had no access to healthcare.

It has do a lot with misogyny. Girls aren't usually referred to doctors and when they are, it is often dismissed as whining, hormones or because of their social life.

Girls who are diagnosed early have more severe presentations of autism while girls diagnosed later have milder presentations or had no access to healthcare.