Personal testimony from a FiLiA Team Member

Today is World Autism Acceptance Day, a day which generally passes with relatively little notice - a little more widely known than Car Insurance Day (Feb 1st) but nowhere near as popular as World Book Day, for example.

Women and girls are particularly invisible on the autism spectrum. When someone says “autism” most people think of a boy of around eight, rocking, playing with trains, lashing out. Few people think of girls, and even fewer of women. For reasons which may be to do with sex or may be to do with socialisation, or both, autistic boys will often externalise frustration or anger (“acting out”), while autistic girls will silently watch, fit in by mimicking, and internalise their frustration or anger (“acting in”). Because a quiet or even silent girl is quite acceptable in patriarchy - she is “shy” or “retiring” or “keeps herself to herself” - women and girls are far less likely to be diagnosed as children. [These are of course generalisations: there are many autistic girls who will act out and many quietly anxious autistic boys.]

I was diagnosed with Autism Spectrum Disorder (ASD) as an adult after a breakdown. Looking back through old school reports the assessor saw what my teachers had not: that being “one of the more challenging pupils I have taught,” my “unfortunate manner,” the perceptible bafflement that “she struggles to socialise and prefers her own company” was evidence not of a difficult nature but of a different neurotype.

I am lucky to have been diagnosed at all. Many girls who struggle in their teens are dismissed as “attention seeking” when they present with mental health problems, or self-harm or eating disorders. Many of us find it very hard to describe and name emotions, or to ‘feel’ those emotions physically. I was into my thirties before I realised that the turns of phrase other people use to describe emotions are experienced by them physically: like many autistic people I have poor interoception and have never had “a red mist of anger” or “a pang of jealousy.” Many of us feel either broadly fine, or really, seriously, not fine at all. But try explaining to a doctor that you are happy other than during a period of ‘shutdown’ when you feel intensely anxious and suicidal - and you are less likely to get the help you need processing and recognising emotion than to be offered a Michelin starred menu of medication, and for some, a bewildering array of possible misdiagnoses: rapid cycling bipolar disorder, generalised anxiety disorder, emotionally unstable personality disorder. If womanhood is unduly pathologised, autistic womanhood is even more so.

And it is not just in medicine that patriarchy works against autistic women. It’s estimated that 80% of communication is indirect - not the words someone says, but the facial expression, including micro-expressions, body language, tone, and so on. I do not read facial expressions or body language well. Sometimes I miss it altogether. In my teens I learned from magazines, books and films that “would you like to come back to mine for coffee” was a code for “would you like to have sex.” Neurotypical girls around me somehow inferred that this applied to other situations too. It turns out that “I’ve missed my train, could I stay on your sofa” also means “would you like to have sex.” Who would have thought?

Autistic women are often more vulnerable to sexual violence, because we find it harder to know when someone is flirting with us, when they think we are flirting with them, or to know when we are being invited to have sex we do not want. The same difficulties in processing unspoken language can make us susceptible to abusers in friendships and relationships as we miss the invisible red flags others would see: the number of autistic women with abusive ex- or current partners is truly alarming. And no surprise, when we spend all of our lives being told to believe the words of others over the experiences of our own bodies (of course that light’s not too bright! no, you can’t hear the fridge distracting you, don’t be silly! looking at someone never hurts!) we are susceptible to gaslighting (but I’m your friend! I’d never hurt you! I didn’t raise my voice!)

If you think that’s exaggerated or overblown, do read this piece on autism and the trope of the Manic Pixie Dream Girl. A study on the role of autism in women who befriend or enter relationships with abusers would be very welcome.

It’s not all bleak. Autistic women are increasingly finding one another, sharing the knowledge we have painfully gained of unwritten social rules, building communities of those who share special interests and don’t care about eye contact. Autism is beginning to be much better understood across the board, and particularly in women. And where we are now moving from a model of “awareness” to one of “acceptance,” one of the best things society can do to accept and accommodate autistic women is to challenge patriarchy.