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'Too many suffer in silence': Why we urgently need to talk about autism and girls
As experts meet today to discuss how autism affects girls, Bee Rowlatt discovers why women on the spectrum are slipping through the net and how they learn to cover up their symptoms.
"I dread her becoming a teenager. My worst fear is her entering a world that doesn't understand her." Lizzie* has a seven-year-old daughter, Maya*, who is on the autistic spectrum. "If Maya has a meltdown in public I sometimes have to restrain her physically, so she can't run away. She screams and bites, and people around us think she's just an awful child, and that I'm a bad mum."
Most of the time Maya is cheery and articulate. She could repeat full sentences aged 20 months. So Lizzie's friends and family couldn't believe it when Maya was diagnosed: "I had a lot of people tell me how 'mild' she must be, usually followed by a disparaging remark about how quick people are to label children these days!" The trouble is, people don't expect girls to have autism.
Autism is a spectrum disorder that makes social communications difficult, and has been described as "extreme male brain". At first glance it does indeed seem to be a predominately male problem: only one in four diagnoses are female, according to the National Autistic Society.
There's a gender bias towards boys
But Dr Judith Gould, director of the Lorna Wing Centre for Autism, challenges this long-held view. She argues that girls on the spectrum are slipping through the net. "There is definitely a gender bias towards boys when it comes to diagnosis."
This sounds familiar to singing coach and TV presenter Carrie Grant, who's got two daughters on the autism spectrum. "Primary school is where most diagnoses are first made. Boys with autism are likely to kick off and get violent, and this behaviour gets acted on. But girls on the spectrum tend to not be disruptive in class, so the school may not notice. This means way too many girls are suffering in silence, not getting the support they need."
Undiagnosed girls already have to navigate their social difficulties alone, but many are also repressing their autism as a way of trying to fit in. In Dr Gould's experience this can lead to mental health issues, such as depression and eating disorders. Even with diagnosis, gender inequality persists in adult life. Spectrum-friendly jobs such as IT and software are still male-dominated.
Women are expected to smile
On a more nuanced level, the weight of expectation on basic daily exchanges can be different. It's OK for men in the workplace to be geeky or eccentric. For women; not so much. Why? Women are generally expected to smile, and be nice. (Hands up if you've had some irresistible rake bellowing "Smile love, it might never happen!" when you're hurrying down the road wondering if you left the back window open.)
It's hard enough for anyone having an off day, but for people on the autistic spectrum the presentation of a socially acceptable public face can be a huge challenge. It has given rise to what's known as "passing". This is the term for how people with autism pretend not to have autism. They learn how to modify their behaviour, so that - heavens forbid - the people around them don't have to feel awkward.
Larkin Taylor-Parker is an autistic law student who plays the tuba. She compares passing to mastering a musical instrument:
"It takes more practice to fake facial expressions than to make a forty-pound horn play a semiquaver. Tuba can be self-taught. Learning to pass took me years of practice."
Have some compassion
This raises an obvious question. Why is she doing all the work here? How hard can it be for the rest of us "neuro-typicals" to make the effort, and have a bit more insight? Someone who seems surly or is avoiding eye contact may still be doing her best to pass, on top of all her other stresses. It seems a high price for social conformity.
So the next time you see a parent struggling to calm a raging child, don't stare and tut. Chances are they're both in distress. Lizzie has had all sorts of inappropriate reactions to Maya's behaviour. And her advice is simple: "Take a moment. She doesn't perceive the world like you do. Just have some compassion!"
It may be a hard and judgmental world for parents of children with autism, but many emphasise the positives.
Carrie is a passionate advocate for her girls. However tough it gets, she still cherishes their condition as a gift: "I celebrate their special needs as a potential creative force. Their insight is extraordinary."
But even she acknowledges that not everyone sees them this way. "I don't want my children to be seen as an acceptable burden; my children are an asset. But I do worry about whether they will be accepted. Has society moved on enough to understand them, even celebrate them?"
*Lizzie and Maya's names have been changed
The autism conference takes place today at the Copthorne Tara Hotel in London. It aims to further the discussion around diagnosis and support for women and girls with autism. Visit the website for more information.
As experts meet today to discuss how autism affects girls, Bee Rowlatt discovers why women on the spectrum are slipping through the net and how they learn to cover up their symptoms.
"I dread her becoming a teenager. My worst fear is her entering a world that doesn't understand her." Lizzie* has a seven-year-old daughter, Maya*, who is on the autistic spectrum. "If Maya has a meltdown in public I sometimes have to restrain her physically, so she can't run away. She screams and bites, and people around us think she's just an awful child, and that I'm a bad mum."
Most of the time Maya is cheery and articulate. She could repeat full sentences aged 20 months. So Lizzie's friends and family couldn't believe it when Maya was diagnosed: "I had a lot of people tell me how 'mild' she must be, usually followed by a disparaging remark about how quick people are to label children these days!" The trouble is, people don't expect girls to have autism.
Autism is a spectrum disorder that makes social communications difficult, and has been described as "extreme male brain". At first glance it does indeed seem to be a predominately male problem: only one in four diagnoses are female, according to the National Autistic Society.
There's a gender bias towards boys
But Dr Judith Gould, director of the Lorna Wing Centre for Autism, challenges this long-held view. She argues that girls on the spectrum are slipping through the net. "There is definitely a gender bias towards boys when it comes to diagnosis."
This sounds familiar to singing coach and TV presenter Carrie Grant, who's got two daughters on the autism spectrum. "Primary school is where most diagnoses are first made. Boys with autism are likely to kick off and get violent, and this behaviour gets acted on. But girls on the spectrum tend to not be disruptive in class, so the school may not notice. This means way too many girls are suffering in silence, not getting the support they need."
Undiagnosed girls already have to navigate their social difficulties alone, but many are also repressing their autism as a way of trying to fit in. In Dr Gould's experience this can lead to mental health issues, such as depression and eating disorders. Even with diagnosis, gender inequality persists in adult life. Spectrum-friendly jobs such as IT and software are still male-dominated.
Women are expected to smile
On a more nuanced level, the weight of expectation on basic daily exchanges can be different. It's OK for men in the workplace to be geeky or eccentric. For women; not so much. Why? Women are generally expected to smile, and be nice. (Hands up if you've had some irresistible rake bellowing "Smile love, it might never happen!" when you're hurrying down the road wondering if you left the back window open.)
It's hard enough for anyone having an off day, but for people on the autistic spectrum the presentation of a socially acceptable public face can be a huge challenge. It has given rise to what's known as "passing". This is the term for how people with autism pretend not to have autism. They learn how to modify their behaviour, so that - heavens forbid - the people around them don't have to feel awkward.
Larkin Taylor-Parker is an autistic law student who plays the tuba. She compares passing to mastering a musical instrument:
"It takes more practice to fake facial expressions than to make a forty-pound horn play a semiquaver. Tuba can be self-taught. Learning to pass took me years of practice."
Have some compassion
This raises an obvious question. Why is she doing all the work here? How hard can it be for the rest of us "neuro-typicals" to make the effort, and have a bit more insight? Someone who seems surly or is avoiding eye contact may still be doing her best to pass, on top of all her other stresses. It seems a high price for social conformity.
So the next time you see a parent struggling to calm a raging child, don't stare and tut. Chances are they're both in distress. Lizzie has had all sorts of inappropriate reactions to Maya's behaviour. And her advice is simple: "Take a moment. She doesn't perceive the world like you do. Just have some compassion!"
It may be a hard and judgmental world for parents of children with autism, but many emphasise the positives.
Carrie is a passionate advocate for her girls. However tough it gets, she still cherishes their condition as a gift: "I celebrate their special needs as a potential creative force. Their insight is extraordinary."
But even she acknowledges that not everyone sees them this way. "I don't want my children to be seen as an acceptable burden; my children are an asset. But I do worry about whether they will be accepted. Has society moved on enough to understand them, even celebrate them?"
*Lizzie and Maya's names have been changed
The autism conference takes place today at the Copthorne Tara Hotel in London. It aims to further the discussion around diagnosis and support for women and girls with autism. Visit the website for more information.
