OPINION: We shouldn’t leave autistic women, girls behind

Apr 13, 2023 | OP-ED, Opinion

Clémentine Pirlot, a software engineer, started to suspect she might be autistic after reading an article about autism in women.

Pirlot flew to Montreal from Toronto for a series of autism assessments. In 2019, at the age of 30, she was finally diagnosed with autism.

Pirlot, now 34, is one of many autistic women who was overlooked and spent most of her life undiagnosed.

“It’s a big, giant confusion in my experience,” she said. “It’s like you try to navigate [the world] but you never understand.”

Autism spectrum condition (ASC) is a lifelong neurodevelopmental disability, in which individuals experience challenges with social communication and interaction, sensory processing, restricted interests and repetitive behaviours, according to the Centers for Disease Control and Prevention.

Autism has always been seen as a male condition.

According to the 2019 Canadian health survey on children and youth, males were diagnosed approximately four times more frequently than females.

The most widely reported male-to-female prevalence ratio for autism is either four to one or five to one.

Based on the available numbers, it is easy to draw a conclusion that autism is more common in males than females. However, research shows autism assessments and the understanding of the condition have been substantially biased toward males.

In research published in 2014, a group of researchers from the University of Cambridge reviewed 329 published articles related to females, sex, gender and autism.

Results showed most autism studies tend to include participants based on the existing male-to-female ratio or even exclude females in the studies.

The research also reported the diagnostic criteria for autism were male-biased and did not consider the influence of sex and gender.

According to the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), to meet the diagnostic criteria for ASC, a child must have persistent deficits in social communication and interaction, and have restricted repetitive behaviours.

Deficits in social skills include challenges in making eye contact, initiating or responding to social interactions, or making friends.

In short, autism, like other psychiatric conditions, is a behaviorally defined syndrome.

However, there is numerous anecdotal evidence which shows autistic females are more likely than males to adopt a social strategy, known as camouflaging, to mask their autistic traits and appear neurotypical.

In research from 2011, an expert with the National Autistic Society in the U.K. found autistic females have greater social motivation than their male counterparts and can study and imitate the behaviours of neurotypical people.

Through social interactions, they receive feedbacks on their behaviours and over time learn to appear less autistic.

Pirlot said in her teenage years, she would always offend people for something she said.

When she was rejected by a group of peers, she would go to a different one and try again, she said.

“It’s kind of like your computer programme, and every time you’re rejected, every time you are grounded for something, it’s an input you add,” Pirlot said.

When diagnostic criteria are based on expressive behaviours and do not consider how autism is manifested across sexes and genders, autistic females can easily be overlooked or even denied of their needs because they are not autistic enough.

The autism spectrum is a complex and dimensional condition, with numerous variations of how autism can be manifested.

Dr. Stephen Shore, an American autistic professor of special education, said autism is as unique as the individual.

“If you’ve met one person with autism, you’ve met one person with autism,” he said.

As the understanding of autism evolves, recognizing autism in females is the first step to closing the gender gap in autism diagnosis.

Autistic girls should receive timely diagnosis and support to overcome their challenges. No girls should be left behind.