Girls and autism
By Kate Hilpern and Bernadette John
Hundreds of thousands of girls with autism are undiagnosed, ran the headlines this weekend. In fact, the supposed exposé is nothing new. The failure to recognise autism in girls and women because it is seen as a ‘male’ condition has been talked about at conferences and explored in journals for at least five years. But the revelation that the ratio of girls and boys with the condition may be as high as 1:3 or 1:2 should be a wake-up call to us all.
The NHS estimates that there are around 700,000 people on the autistic spectrum in Britain, based on a ratio of roughly 10 boys to every girl. But recent research has found a ratio of 3:1 and Professor Francesca Happé, director of the Social, Genetic & Developmental Psychiatry Centre at King’s College London – who has a £500,000 grant to investigate gender differences in autism spectrum disorders (ASD) – is among those who believe it could be as low as 2:1. That would suggest that up to 300,000 girls and women with autism are under the radar.
The ripple effect is huge. A diagnosis of ASD can be invaluable in helping people making sense of why they feel ‘different’ and in finding understanding from family and friends. No wonder Happé says the failure to recognise the extent of autism in girls and women is taking a stark toll on their mental health, with many of those affected suffering secondary mental health issues such as anxiety, depression and self-harm. Research last year found that almost a quarter of women (23 per cent) hospitalised for anorexia met the diagnostic criteria for ASD. And then there’s educational support – without a diagnosis of autism, it’s more than likely an autistic girl won’t reach her full potential.
A new study from UCL has found girls show an upsurge in autistic traits between 10 and 16 years-old. They say it’s unclear whether this is genuine late onset, or pre-existing difficulties becoming more obvious as social pressures and gender expectations increase. Parents typically contact us at the GSG with concerns about their daughters us when they are 14+. Things often unravel with the added pressures in the GCSE year – or they get through those, but the less structured studies and more self-reliance needed for A levels tips them over and they can’t cope. Often, these parents will first come to us about another issue, which can be the first clue to autism – eating disorders (as mentioned), gender querying (gender dysphoria is far more prevalent in autism), or things like bad behaviour, anxiety or self-harming.
But we also see a number of cases in girls of around seven to eight years, when parents report difficulties with friendships because a girl annoys others by trying to control play, or by copying her friends. And this is the age when independent schools often start making noises to parents about the girl needing to move elsewhere.
We regularly guide these parents towards seeking an assessment as a first step. They may want to move their daughter to a different school because she is unhappy, but if they don't get behind the reasons for it, they find the same problems emerge over time in a new school. Armed with assessment information we identify the school which is best equipped and most experienced at dealing with her particular issues.
But, as it is, the scandal remains that autism is much less likely to be picked up in girls, even by professionals. And this is not only because research has been inherently biased towards male cohorts, but because many still see autism as a result of having an ‘extreme male brain.’ In addition, studies show there may be differences in how autism appears in females, with narrow special interests more likely to be mainstream – such as horses or pop music - than, say, trains or bridges. And there is some research that suggests females may be better at masking autistic traits, for example by modelling behaviours of more popular girls at school.
We therefore applaud the drive towards more developed and nuanced diagnostic processes that will help professionals better understand the different ways autism can manifest in females, and which in turn should help bring about change in the education sector and, more widely, in society. As it is, specialist schools for autism tend to remain extremely boy heavy and the public perception of autism is almost entirely male..