Girls and women can be very adept at masking the traits of autism, says Professor Gina Rippon. Photo / 123rf
By RNZ
For generations, researchers have been convinced autism was a “male issue” and simply haven’t bothered to look out for signs of it in women, says British neuroscientist Gina Rippon. We now know that autism presents differently in females, who often mask the traits so they can fit in.
In her new book The Lost Girls of Autism, the autism researcher speaks with many late-diagnosed women who were miserable at school, developed eating disorders and self-harm behaviour in adolescence, entered abusive relationships and struggled all of their lives.
“The lack of awareness of this issue is quite profound, as well as the suffering that individuals have had to go through,” Rippon says.
Rippon begins The Lost Girls of Autism with the confession that she herself had been part of the problem she now hopes to help solve.
“I’d fallen into the trap of believing that autism was male and therefore we need only look at males.”
As an autism researcher, her own “wake-up call” was discovering that the belief that autism is a male or boy thing – and therefore, to understand the autistic brain, we need only study the brains of male participants – was just an assumption.
In 30 years of brain imaging, more than 70% of research into autism was done on only boys and men, Rippon learned.
But because boys are 10 times more likely to be referred for an autism diagnosis than girls with similar problems, they tended to be the only ones getting diagnosed.
The “genuine belief” that autism was inherently an issue for boys and men has fuelled what Rippon calls “the male spotlight problem”.
In recent years, though, powerful personal testimonies from women diagnosed with autism later in life have helped clinical and research communities realise there’s been a big gap in their understanding, she says.
Sadly, many late-diagnosed women – who’ve always had some kind of behavioural mental health problems throughout their lives, Rippon says, have experienced what she calls “diagnostic bingo”.
“They’ve presented for support, and they’ve been given all sorts of different diagnoses like borderline personality disorders – very popular – perhaps OCD, social anxiety, etc. So, wrong label, wrong treatment.
“Then eventually, something happens. Maybe they read a book about somebody else who’s discovered they’re autistic. And their immediate response is such relief.
“These are women in their 40s, 50s, 60s, and even 70 was the oldest one I looked at. They were actually realising all the difficulties they’d had throughout their lives. Now, they understood why they had those difficulties.”
The ability of many women to mask or camouflage autistic traits turns out to be a key factor in why so many have missed out on being diagnosed, Rippon says.
“This camouflaging is girls being socialised from a very early age so that they should try and fit in, they shouldn’t make a fuss. Girls might be sitting very quietly, but actually under the table shredding the sleeves of their cardigans to lace by picking at them just to try and calm themselves down.”
For example, the repetitive hand gestures known as stimming are often quite evident in boys and in the public consciousness as a feature of autism. The self-soothing behavioural rituals that girls invent – like picking their nails or twirling their hair – can be less obvious, Rippon says.
The “male spotlight problem” with autism diagnosis is baked in all the way along the pipeline, Rippon says. Because teachers don’t think of girls being autistic, GPs tend not to refer girls for assessments, which themselves have thresholds that boys are more likely to pass.
Now, the clinical and the research communities are “moving” in response to autism’s decades-long gender bias, Rippon says.
“There are now very focused research programmes specifically looking for sex differences, and assessments that include the presence of camouflaging and masking, which, by definition, if it’s successful, is quite difficult to discover.”