The Provocateur: ‘We’re failing autistic girls’
When it comes to diagnosis, treatment and research, women with autism are being left behind by sexist misconceptions, says author – and mother of an autistic son – Jessie Hewitson
Close your eyes and picture an autistic person. Someone awkward who finds it hard to make eye contact? Aloof and socially detached? Sheldon in The Big Bang Theory, Dustin Hoffman in Rain Man, Christopher in The Curious Incident Of The Dog In The Night-time? Are you ever not thinking of a man?
I can’t blame you – it’s the image I had when, aged two, my son was given an autism diagnosis. I hadn’t even realised I pictured it as a specifically male condition. Only in researching a book about autism did I correct a preconception that the vast majority of us have.
Because not only were many of the autistic people I interviewed for my book women, they were also funny, bright, chatty, empathetic and sensitive; mothers in long-term relationships. They did not remotely fit with my preconditioned stereotype. So much so, I’m ashamed to say, I sometimes caught myself thinking: were they really autistic? My knee-jerk reaction is telling. The more I learned, the more I became convinced that autism is a feminist issue. Our handling of autism is sexist – autistic men don’t have their diagnosis questioned or dismissed, autistic boys are often identified earlier and supported better at school.
Broadly speaking, an autistic person is likely to have different social needs to a non-autistic or ‘neurotypical’ person. They may have intense special interests and sensory issues; commonly, they experience sound, smell and visual information differently. They may have difficulties with ‘executive function’ – a set of mental skills that helps with planning, which means while they may fly through a PHD, they will struggle to fill in a form or make beans on toast for dinner.
Trouble is, it’s tricky to generalise about the differences between autistic men and women, just as it is between non-autistic people. But one generalisation that can be true is the ability of autistic women to do a better impression of being neurotypical than autistic men – albeit at massive personal cost, with mental health problems often the norm for this group.
An autistic girl in the playground might be found in the company of others, but she could be confused by many of the encounters and may well be teased or bullied because of this, all the while trying to cover up her difference. Meanwhile, a male classmate may already be diagnosed and receiving specialist support.
Once I started asking more about the challenges faced by the women I interviewed, I realised there was no doubting their diagnoses. Laura James, author of Odd Girl Out, a memoir about getting a diagnosis of autism in her forties, says she can easily do a TV interview but finds herself in a state of paralysis when it comes to doing a weekly shop. She can walk into a restaurant and something about the smell or the lights will overwhelm her to such an extent she has to leave.
‘Sometimes, the world feels too much and I cannot communicate,’ she says. ‘I will go for weeks not responding to emails or calls, except from a few “safe” people. I can write a feature in 20 minutes but go for two days without remembering to feed myself, only realising I need to when I almost faint. I have to set alarms on my phone to remember to clean my teeth.’
For Dr Catriona Stewart, who runs the Scottish Women’s Autism Network, autism is without doubt a feminist issue, for what she calls a historically marginalised group. For autistic women, the glass ceiling is double-glazed. ‘ They are invisible, missing from research, strategy and services,’ she says. ‘ We know that there are issues within the whole population around promotion at work, of various forms of gender or sex-based discrimination, but I would argue this is exacerbated for autistic females. Many of them report feeling they don’t fit the mould of what society expects of them as females.’
When autism was first described by child psychiatrist Leo Kanner in the 1940s, he assumed it to be an exclusively male condition. And, since then, the diagnostic framework has been continually geared towards men and boys. It’s thought there is one autistic girl for every four autistic boys in the UK. That gap will narrow as we get better at identifying autistic girls. Some believe the real ratio is one to two; others think the numbers are equal.
So why the delay in recognising autism in women? Because, I think, of autistic women’s tendency to try to fit in. But also because we have dismissed the experiences of autistic women. We know from research that autistic girls can arrive at their assessment appointment and present with similar challenges as an autistic boy, but they are less likely to receive a diagnosis. According to the National Autistic Society, 42% of women report they were diagnosed with another condition first because their autism was not identified.
Take Ruth Moyse, a doctoral researcher at the Institute of Education at Reading University. ‘I was bullied at secondary school. Failed my A-levels. My twenties were spent struggling to make or maintain friendships, and using alcohol to selfmedicate. I need one special person I can trust and depend on to help me navigate the world, and unfortunately my inability to gauge people’s intentions resulted in some very poor choices of boyfriend, and some hideous and emotionally scarring experiences. I didn’t understand how to be me. I had constantly high levels of anxiety, which frequently made me ill, and serious episodes of depression.’
It took Ruth until her thirties to begin to work out who she was and feel comfortable with herself. She is now married with kids, one of whom is also autistic. In fact, it was only when having her daughter assessed that Ruth realised she too might be on the spectrum. She was diagnosed in her forties. And it mattered. ‘It was incredibly empowering,’ she says. ‘I felt I had finally found myself.’
In the future, I hope that when we close our eyes and imagine an autistic person, it will be like thinking of a neurotypical person – gender will be neither here nor there. ‘Autism: How To Raise A Happy Autistic Child’ by Jessie Hewitson is out now (£14.99, Orion Spring)