AUTISM Spectrum Disorder (ASD) is diagnosed four times as often in males as it is in females. But is this actually because it’s more common in boys? Last year, a study published in the Journal of the American Academy of Child and Adolescent Psychiatry revealed that the condition may be underdiagnosed in females because the traits we associate most with the condition are masculine, and there’s a growing understanding that the condition can manifest itself in different ways in females.
Girls may be adept at “masking” and may appear more socially active than their male counterparts, but this could be an adaptation to a society where girls are rewarded for being communicative from an early age. A Swedish research team has suggested that the Autism Spectrum Screening Questionnaire (ASSQ), which is still based on research from the 1940s, should be tailored for gender to broaden the catch-net and provide a diagnosis for girls.
Hans Asperger, the Austrian paediatrician who was one of the first researchers to describe autism in children, and whom Asperger’s Syndrome is named after, only studied male subjects. Is it any wonder, then, that there are difficulties describing the condition in girls?
To compound matters, autism is a spectrum disorder; severely affected children are easy to identify, and girls may even display more of the “severe” symptoms such as lack of interest in communicating, head-banging and repetitive behaviours than their male counterparts.
But high-functioning ASD girls are more difficult to spot. Most countries have now adopted the term Autism Spectrum Disorder (ASD) instead of autism or Asperger’s syndrome. The condition affects people differently depending on IQ and severity of symptoms, and although it has a genetic aspect, its causes are poorly understood. Females on the high-functioning end may be labelled as oddballs: find it hard to maintain relationships, isolate themselves, and display excellence in one very narrow field of interest, or be prone to inhabiting a fantasy world. Sensory processing problems such as taste aversion and noise aversion are also common.
According to Swedish researchers, 53% of ASD girls opt out of physical education in school and a similar percentage will experience bullying. Diagnosis, as well as providing additional learning supports and physical therapies, can aid self-esteem by helping girls and women develop a toolkit to cope with their condition.
Australian psychologist and autism expert Tania Marshall’s first book, I am Aspiengirl, focuses on higher-functioning female children. The follow-up, I am Aspienwoman, which is due for publication in September, focuses on adults. It has an appendix with a dazzling array of possible signs and symptoms of ASD in females. Some of them, such as “may begin talking early or late” or “may have a tendency to eat only processed food”, “skilled with animals, nature and children”, could easily be character traits rather than symptoms of ASD.
Isn’t she worried that ASD is being overdiagnosed, and that these lists may be misleading? On the contrary, Dr Marshall still believes that the condition is being underdiagnosed in females, but she cautions against self-diagnosis. “My list is a screening tool, not a diagnostic tool,” she said. “You’d have to have the majority of them and they’d have to be significant enough to interfere with day-to-day functioning.”
The recent rise in diagnosis, with some reports claiming that as many as one in 68 people have ASD, begs the question of whether there really are so many more people, of both sexes, being born with autism, or whether ASD is actually being overdiagnosed; the issue is a contentious one.
Dublin-based speech and language therapist, Caroline Winstanley performs assessments on both boys and girls. She believes that current diagnostic tools are sufficient as long as the tester is experienced enough to pick up on girls’ subtler presentations. “Girls are harder to assess; their symptomology is more subtle than for boys. I certainly come across more non-verbal boys than non-verbal girls,” she said.
Dr Winstanley does feel that there is currently a trend towards over-diagnosis. “I come across children who have been given the label and I don’t agree,” she said. “Parents themselves are very much more aware of autism. I think it’s very much more on people’s minds and I feel that when a child is younger there are many other things that can look like autism. There’s a bit of a rush towards what is a permanent label. Sometimes it’s very clearcut but in some cases I’m not happy to call it and I’d like to give time.
“However, girls run the risks of other mental health problems in adolescence if they’re not diagnosed. They need a well-supported environment as they become more self-aware and conscious of their differences,” Dr Winstanley said.
Dr Marshall is keen to highlight the many under explored ways in which girls with ASD are affected by their undiagnosed condition.
A University of Cambridge study from 2013 revealed that girls presenting with eating disorders such as anorexia score more highly for autistic traits. ASD people of both genders are notoriously picky eaters. As a side-effect of their sensory processing difficulties, undiagnosed girls with ASD may be finding it physically difficult to identify the sensation of hunger or may have an aversion to the textures and tastes of their food.
“It should be standard to screen for ASD when a girl presents with an eating disorder,” Dr Marshall says.
Adult women with ASD may battle with additional mental health problems, often caused by stress and anxiety due to their ASD. Many higher-functioning ASD sufferers will be able to have a career and maintain a superficially “normal” life, yet aspects of life such as mothering may be very difficult. Sensory sensitivities can make the mess and chaos of babies and small children difficult to deal with for a mother with ASD, Dr Marshall says.
Dr Marshall discusses disclosure as a separate issue to diagnosis: “It’s one thing discovering yourself that you have ASD, but revealing your diagnosis to others can be a minefield and have consequences for employability, relationships and family life.”
Anna Catherine’s daughter Anna, now 22, was diagnosed with autism at five and is in the middle of the spectrum. Anna attended a special school, and lives at home because she can’t live independently.
“Ireland was a very different place 17 years ago,” Catherine said. “There was no common knowledge about autism.” At 2 ½, Anna made little attempt to communicate and wasn’t speaking in sentences. Catherine realised that her daughter would need help, but, in the pre-internet era, information was scarce and Catherine had difficulty persuading medical professionals that there was something wrong.
“My GP said, ‘No, no, she’s fine, I see her every day skipping up the road with you, she’s grand’. Anna didn’t look like what he considered an autistic person to be. It was very isolating and I felt very helpless,” Catherine said.
Puberty can be a minefield for girls with ASD, for whom uncertainty is a big source of anxiety. In Anna’s case, her tendency to take things literally took a comic turn when Catherine showed her an animation showing changes to a girl’s body.
“The video showed a girl going from flat-chested to fully bosomed in about 15 seconds. Anna screamed and ran away,” Catherine said.
“I realised she thought it was going to happen as fast as it did in the video. I went back over it and explained that it would happen very slowly. She looked terrified at these animated bosoms that just shot out!”
Apart from this hiccup, Catherine’s careful preparations meant that Anna dealt with her physical changes well. Fortunately, unlike many ASD girls, who often display less interest in their physical appearance and hygiene, Anna is fastidious.
Linda has a seven-year-old boy and a 10-year-old girl and both are in the process of being diagnosed with ASD. To her, the differences in how the condition presents for boys and girls are clear.
“With Tom it’s more physical,” she said. He makes unusual demands for physical pressure, such as asking to be sat on or squeezed — a common trait —and, upsettingly, is prone to bouts of self-harm. He has major “meltdowns” in response to lack of rules.
Linda’s daughter Katie is highly intelligent and keenly aware of her difficulties fitting in in school. “She asks, ‘Why am I so different?’” Linda said.
Although Katie was reading at three, she is clumsy and aged 10 can only recently tie her own shoelaces and has difficulty using buttons, zips and hair ties.
As friends around her develop an interest in boys, their appearance and social outings, Katie’s interest in fantasy worlds sets her apart.
“She has low self-esteem and constantly laments her self-perceived faults,” Linda said. She is hoping that a diagnosis will help Katie to understand why she’s different.