Ever heard the one about the man who wouldn’t ask for directions, or the woman who couldn’t read a map?
Society is full of jokes about the ways in which men and women are different. Many of them are nonsense, but most of them are based on an acceptance that men and women’s brains work in different ways. We know this because biologists and researchers tell us this.
Scientists have created tests to show that women score better at languages and men score better at spatial reasoning, that women can multi-task and men prefer single-subject learning.
These results are of course open to interpretation and conjecture. The conversation about the differences between men and women is an on-going and very busy one. But one thing that everyone in the room accepts is that the sexes think differently. Why then, do we assume that men and women with autism will think, and thus behave, in exactly the same ways?
Britain’s National Autistic Society defines autism as a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them.
Ask the person on the street to define autism and the answer is likely to come back: Rainman. That Dustin Hoffman’s character brought autism to a worldwide audience and shone a light on a diagnosis that many had previously never heard of is to be applauded. That it is still, nearly 30 years after the film’s release, the benchmark for autistic behaviour, is a problem.
There are no women with autism in Rainman. But there are many women with autism in the real world, and their needs are going unmet because we are all still working to a male template, according to Dr Liz Pellicano, a developmental cognitive scientist at University College London.
“Difficulties in detecting autism in girls by professionals (and parents) is unsurprising given that there has been so little research on gender differences,” she said. “All of the research thus far has been conducted on girls vs boys who have already been diagnosed with autism under a biased male-centric diagnostic system.”
As a result, “GPs don’t really believe, even now, that girls can be autistic”, explained Sarah Wild, headteacher at Limpsfield Grange, a school for girls with autism.
“We have heard stories of doctors telling women on the spectrum that they can’t be autistic because they can make conversation and have relatively good eye contact. We need to unlearn what we think we know about autism and start again, this time with a girl bias.”
The ways in which women with autism differ from men with autism vary widely. After all, it is a spectrum condition, neatly summed up by a well-known saying in the community: “When you’ve met one person with autism, you’ve met one person with autism.”
But talk to a room of parents of girls with autism and patterns quickly start to emerge. One of the most common is that many girls with autism will try to hide their difficulties in understanding the social conventions around them, and attempt to blend in, bowing to the expectation that girls behave more sociably than boys.
The stress and overload that this causes them often results in major meltdowns once they get home. One parent, speaking anonymously, explained: “My daughter hates getting up for school in the mornings because she can’t bear the prospect of the day ahead of her.
“When she gets home she is pale from the strain of the noise and the faces – ‘all the eyes’, as she puts it – and trying to follow the lessons and understand the jokes, while feeling permanently on the outside. She will often burst into tears as soon as she comes in the front door, or fly into an uncontrollable rage.”
Given these responses it does not come as a surprise, then, to hear from parents about how many of their daughters have anxiety-related mental health illnesses.
A chink of light in this bleak scenario is that because these effects are so often closely linked to autism in girls, they may offer a way in for doctors seeking diagnosis guidelines.
“As autism is a medical diagnosis, I think the starting point needs to be to stress the importance of clinicians considering the possibility of autism being an underlying cause of, for example, anxiety, depression, self-harm, eating disorders and the like in girls and women,” explained Dr Rona Tutt, SEN lead at the National Association of Head Teachers.
“As we seek to raise awareness in the medical profession that girls also have autism, this needs to be kept in mind when confronted by someone who has the above symptoms.”
The act of raising awareness is often cited by professionals and charities as an essential part of improving understanding and support. But what does “raising awareness” in this context actually mean?
“Raising awareness is an important next step. But it is difficult to do so without knowing precisely what we need to raise awareness of,” continued Dr Pellicano.
“I think we can only do this properly once we know much more from research – which will unfortunately take time.
“We need much more research in girls and women across their life-span, including on their early behavioural features (for diagnostic purposes), their social experiences, their developmental trajectories, their mental health and wellbeing, their engagement with education and healthcare services, and the like relative to boys and men. All of this is especially important for determining whether we need to develop specific ways of identifying and supporting girls and women on the spectrum.”
It will also be vital to have buy-in from health, social care and educational establishments from the NHS to Children and Adolescent Mental Health Services (CAMHS), social services and schools.
“There is a need to link closely with health professionals who are in a position to educate their colleagues in improving diagnosis,” added Dr Tutt.
In the end, the benefit is not just for the girls, points out Carrie Grant, a mother to three daughters on the spectrum.
More girls with autism being able to live independently and take up employment and lead more fulfilling lives would reduce the nation’s benefits bill and increase the happiness of all concerned.
But a more profound result than that, Ms Grant points out, is the fact that societies flourish when they embrace those who think differently.
“High-functioning girls with autism have a lot to offer. They are assets, not burdens. When they are fully understood, they can fly.”
- Sophie Walker is a journalist, author, campaigner and member of special needs association nasen’s working group established to examine support and provision for girls on the autistic spectrum. Visit www.nasen.org