Autistic Women are Redefining Narratives about Autism

Autism can sometimes feel like a boys club. 

Rates of autism prevalence suggest that boys are, on average, 4 times more likely to be autistic than girls. This figure highlights a state of profound malaise within the research community and does not reflect the unique presentation of autism in women and girls.

Even the largest autism organisations, such as Autism Speaks — a large non-profit which touts itself as an autism advocacy group — have been riding this wave of gender stereotypes for years with the ‘Light It Up Blue’ campaign during Autism Awareness Month. 

This false gender stereotype of autism being ‘more common in boys’ is making it harder for women, girls and people with diverse gender identities to receive a diagnosis. There are many reasons why women and girls are diagnosed far less and often later in life than men and boys. 

First, women and girls tend to be better at masking their autistic traits and learning neurotypical social behaviours such as eye contact, gesture, holding conversations — sometimes evading diagnosis well into adulthood. 

In Asperger’s Syndrome, A Guide for Parents and Professionals, Tony Attwood states how “girls tend to be relatively more able in social play and have a more even profile of social skills” than boys. “They observe the other children and copy them, but their actions are not as well-timed and spontaneous”.

While we all adjust (more or less) our behaviour to fit in or conform to social norms, the constant effort to appear similar to other people can be extremely exhausting. “Over the years, I became an expert at masking the aspects of me that felt different. I blended in enough to go on nights out with friends and, in 2015, I got married. But I was pretending to be someone I wasn’t, and the marriage didn’t last,” explains the autistic activist Hannah Molesworth, in an article for Women’s Health Magazine. She was diagnosed at 23. 

Autism looks different in boys and girls. Although every autistic person is different, here are some common characteristics in autistic women and girls:

• Mimicking others to blend in and a tendency to camouflage difficulties
• A special interest (in animals, music, art, literature…) that often appears more typical than, for example, many boys’ perseverative interests in physics, statistics, or transportation
• Trouble playing with others and sharing – wanting to dictate the rules or preferring to play alone
• A strong imagination (might escape into the worlds of books)
• A desire to arrange and organise objects and toys
• An ability to hold emotions in check at school or at work, but be prone to meltdowns or explosive behaviour at home (‘masking’)
• Strong sensory sensitivities, especially to sounds and touch

In Asperger’s Syndrome, A Guide for Parents and Professionals, Tony Attwood explains that “in general, boys tend to have a greater expression of social deficits with a very uneven profile of social skills and a propensity for disruptive or aggressive behaviour, especially when frustrated or stressed”. These characteristics are more likely to be noticed by parents or teachers.

Perhaps, though, the main reason why women and girls are diagnosed later in life, misdiagnosed or don’t get diagnosed at all, is because of a bias that is built into the system. And it’s a hard one to crack. Research on autism still heavily focuses on boys, meaning that the way we understand neurodiversity tends to be based on the experiences and behaviour of men and boys. 

To break this cycle, some researchers are making it a priority to recruit girls, women and gender non-conforming participants into their studies. This could literally transform our understanding of autism. 

But autistic women and girls are already redefining narratives about autism. They are writing books about what being a woman on the autism spectrum is like (Odd Girl Out, by Laura James, is a great one!), they are creating educational TikTok and Youtube videos (teenagers’ favourite is Paige Layle), they are fighting for autism rights (we can’t recommend enough Dr Temple Grandin’s books and speeches)… In short, they are entering front-line positions to improve access to services for autistic women and girls in a meaningful way.