Under Diagnoses of Women - Costs and Progress

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Melanie Sykes described the experience of her autism diagnosis at the age of 51 as “life-changing” and one that helped her make sense of previously unexplainable struggles she had faced. It is also part of a wider trend, with an exponential rise in the number of women being newly diagnosed with autism in adulthood in the past two decades.

Francesca Happé, the director of the Social, Genetic and Developmental Psychiatry Centre at King’s College London, said: “It’s a phenomenon at the moment. There’s been a lot more awareness and a lot of women coming for a first diagnosis in mid-life.”

In 1998, 18% of new diagnoses in England were of females, increasing to 23% in 2018. Studies based on active screening of children rather than diagnostic records suggest that the ratio for those meeting current diagnostic criteria is closer to 3:1.

From this new body of work, evidence is emerging of subtle differences in how autistic traits present in males and females. “Cognitively, females might have some advantages in terms of memory and mental flexibility which means they’re better able to perform in social situations, in effect masking their autism,” said Hannah Belcher, an autism researcher at King’s College London.

We also know that this group is more likely to camouflage, possibly due to socialisation pressures to ‘fit in’ with others, and so will attempt to compensate for their autistic traits.”

This does not necessarily mean that the core traits are different – but they may be perceived differently by others. Recent research by Belcher suggests that, for instance, non-autistic people view the social behaviours of autistic women more favourably than they do those of autistic men.

The increasing awareness that autism affects women is set against a huge increase in diagnosis across the board.

This shift is a point of contention in the autism research community. “Some question the clinical utility of the broadening diagnostic criteria,” said Russell.

Russell said that the broadening of the criteria might mean that a diagnosis was “not that useful” for recommending a clinical pathway because the group is now so diverse.

Some point to the potential risks of failure to diagnose autism, which is linked to a range of other mental health issues, including anxiety. One small study found that 23% of women receiving hospital treatment for anorexia met the diagnostic criteria for autism, although it did not establish whether the women’s social and communication difficulties predated their eating disorder.

Another study, published this year, suggested that women diagnosed with autism in adulthood were more likely than men to have previously been misdiagnosed with personality disorders or other conditions.

In Belcher’s experience, autistic women are often told “but you don’t look autistic”, because the image of autism has been biased towards males and children. “Previously we weren’t visible … but with people like Mel Sykes coming out, so to speak, it gives the others courage to do the same,” she said. “This is really positive for raising awareness of different autism presentations.”