My sister was nine years old when she was diagnosed with autism. Up until that point, I believed she was gifted, extremely anxious and often demand-avoidant, but never autistic.
As a SEND teacher with additional responsibility for autism spectrum conditions (ASC) provision at the time, I had been arrogantly confident that my sister could not be autistic as too many of her personality traits did not fit with the autism profile I had long understood.
And my job was not the only reason I was so sure: years before my sister had been born, my brother had been diagnosed with autism as an infant. Everything I had learned about autism matched his description perfectly.
Quick read: Professor Uta Frith on autism
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After my sister’s diagnosis, it became my mission to unpick what it was that had thrown me off the scent. Could there be a different presentation of autism in women and girls? I soon discovered that the guilt should not entirely sit with me, for I had learned that our shared global understanding of autism required some catch-up.
Research studies and anecdotal reports are telling us that many women have been living with undiagnosed autism for years. Women diagnosed in their adulthood frequently report that they have experienced bullying or have been misdiagnosed with different mental health labels growing up, or have, in fact, been correctly diagnosed but as a result of an unmet underlying need. This is also true of some men.
The diagnosis rate of girls to boys is on average 1 in 4. Significantly, this climbs to 1 in 2 where autism co-exists with a moderate or severe learning disability. Conversely, the rate in intellectually able individuals has been reported to be much lower, at 1 in 10.
Conclusions could be drawn that autism simply affects more boys than girls, but others believe a combination of girls having greater masking abilities and biased societal perspectives mean they are not as likely to be spotted.
Masking and stress
Previously, I had dismissed autism as a diagnosis for my sister because of her clear strengths in imagination (another autism myth-bust) when I would watch her role-play teacher with her many teddies. When I think about my sister’s play now, I am reminded of the Ofsted inspections that she carried out, the IEP targets she had set her furry students and the post-parents evening conversations she had asked me to share. At one time, I had even gifted her with the national curriculum as a Christmas present.
Clearly, it is not the type of interest that matters but the intensity of it.
Autistic girls are also great at social observation and mimicking conversational phrases and expressions to manage interactions with unfamiliar people. This appearance of sociability can be misleading and disguise the difficulties they actually have with intuitive understanding.
The lack of diagnosis for women with autism means there is far less information about girls with autism. But if you seek it out, you can find it.
When my sister learned of her diagnosis, she began to read books written by autistic girls, women and those that support them.
At this point, I want like to recommend The Curly Hair Project – a great resource for understanding neurodiversity in both girls and boys.
And it is reassuring to see an increasing number of blogs, YouTube videos and podcasts all promoting a positive acceptance of autism in girls.
Last November, I was delighted to deliver Inset training to staff from Merseyside schools on this very topic. I was also thrilled to have been joined by our students at Abbot’s Lea School; Alison, Mya and Saoirse.
Alongside their mothers, they spoke honestly about their lived experiences of autism. The workshop participants were left reaching for the tissue box as they realised just how exhausted the girls were from continuously masking social interaction and sensory difficulties, and trying to fit into a society that was too often disabling to them.
Compassion and collaboration
Are you thinking hard enough about the well-behaved-in-school girls who are also meltdown-monsters-at-home girls? Have you considered why this might be happening?
My next recommendation is for special schools where autistic girls are usually outnumbered, with many classes limited to just the one. A weekly girls club can bring about greater opportunities to talk to girls about personal safety, feeling empowered to say no, and to ‘find their tribe’ where special interests can be enjoyed and shared.
Most importantly, we need to continue talking about different presentations of autism and collectively bust long-held beliefs of what being autistic ‘looks like’. Acceptance of difference is a must, understanding where support is needed is vital and creating a world that enables girls and women to use their unique strengths and abilities to contribute to society is the goal.
Micah Grimshaw is head of autism research and development at Abbot's Lea School in Liverpool