Thursday 21 August 2014

Autistic women: a life more ordinary

Lauren, Selina, Cara and Kelly. Photographs by Steve Schofield
Lauren, Selina, Cara and Kelly (left to right) are all women on the autistic spectrum 

Why do women make up only one in four of those diagnosed as autistic? Could it be that they are simply better at pretending not to be? Charlotte Moore meets a group of women for whom 'normal' is an alien language that they battle to learn

I am in Godalming, Surrey, sitting with a group of pleasant, personable women who have come together, as they do each month for an all-women's night, to share news, views and experiences. You'd imagine that the room would be alive with a babble of voices, but it's not. The gossipy, reciprocal flow of normal female conversation is absent, and so far not one of them has asked me, a stranger, a single question about myself or what I am doing here. The stilted atmosphere would strike outsiders as disconcertingly weird, but these women are oblivious to the awkwardness. They are autistic, and for them this is normality.

'We are not real women according to any of the known guidebooks… [But] we are not from another planet. We tricked you… We are from right here, Planet Earth.' So writes Judy Singer, one of 19 contributors to Women from Another Planet? (2003), an anthology written by a group of women on the autistic spectrum who met on the internet. While Singer, her co-authors, and the women gathered around me in Surrey, may not be from another planet, they do constitute a distinct minority. According to current statistics one in 100 British people has autism (I am myself the mother of two autistic boys), and one in four of those is female.

Ever since autism was first identified in the 1940s it has been accepted that autistic males heavily outnumber females. In Autism: Explaining the Enigma (2003), Uta Frith, a leading developmental psychologist at University College London, says that among those with the most severe autistic symptoms the ratio of men to women is four to one, rising to 15 to one among those with Asperger's syndrome (a variant in which autistic behaviours are less extreme and verbal ability is higher). But she goes on to speculate, 'It is worth considering whether girls are less likely to be detected… Girls are often considered to be more verbal and more compliant than boys in educational settings, and therefore might show better compensatory learning.'

She raises a vital question. Are women less likely to have autism, or are they under-diagnosed and slipping through the net because they are better than their male counterparts at adapting to social situations? The contributors to Women from Another Planet? believe the latter. Most of them were not formally diagnosed until adulthood, if at all. Most lead apparently 'normal' lives in that they study and have jobs and sometimes husbands and children. But all feel profoundly 'different'; they write of the terrible, damaging strain of attempting to conform to social expectations.


Certainly, social stereotyping can lead to autistic behaviour going unnoticed. A woman who depends heavily on a dominant husband and has little life outside the home may well escape scrutiny. In school, while autistic boys are typically loud, disruptive and destructive, girls can be quiet, passive and compliant, but mentally absent; and students who give no trouble are less likely to be flagged up by a busy teacher. It has also been suggested that autism could be one possible cause of traditionally 'female' problems such as anorexia. Christopher Gillberg of the National Centre for Autism Studies at the University of Strathclyde explains, 'A girl may be withdrawn and uncommunicative without attracting attention, but when she develops a calorie fixation it becomes a serious problem. Counting calories may be a manifestation of autism. Some women could be going undiagnosed.'

Simon Baron-Cohen, the director of the Autism Research Centre at Cambridge, has pioneered the theory that autism is caused by a testosterone surge in pregnancy, affecting the child's brain development, leading it to be born with an 'extreme' male brain - strong on systemising, weak on empathy. This, he believes, can affect both males and females. Autistic girls, he has said, often have 'tomboy' traits, and feel 'more compatibility with typical [not autistic] males simply because typical males may be more willing to adhere to the linear, step-by-step form of thinking and conversation. This is echoed by the internet group: 'We may have more in common with [non-autistic] men than we do with [non-autistic] women, for it is women who are more often the social gatekeepers, who scrutinise our manners, care more for them than for our minds, and want to keep us out of the club.'

The need, then, is growing for 'clubs' of a different kind, spaces where autistic women can communicate with others who share and appreciate their differences. The Godalming club which I have visited is a pioneering experiment by the careworker Bettina Stott. She had run a mixed-sex social-skills group for people with autism for some years, but two years ago, at the request of some of the female members, she started an all-women group, which meets once a month. 'Our ladies are very vulnerable,' she tells me shortly before the meeting starts. 'They tend to fall in with what men suggest. In their own group they can discuss topics in a different way. It gives them a chance to talk honestly about their autism, and to learn about the way society works; they may adhere to social structures, but often they don't understand what they're for.' Group meetings begin with informal socialising, then move on to a structured discussion of a topic - anxiety, empathy, bullying - guided by careworkers. Stott feels that autistic women are more able to see things from another's point of view than autistic men, and are more emotionally responsive. Many of them have been misdiagnosed in the past with psychiatric illnesses or learning difficulties. 'Autistic tendencies are often overlooked,' she says.

Stott introduces me to four of the women who regularly attend the group - Lauren, Selina, Cara and Kelly. Lauren, 32, was not diagnosed until she was 23. She now lives in a supported flat, and accepts that she needs help with most practicalities, but loves it when her support workers are on holiday. 'It's bliss. I need time to chill out on my own,' she says. For autistic people, prolonged social contact is exhausting, and as I talk to the girls it emerges that the group is popular because it provides contact with other women, but within a definite time limit.

Selina, 27, also speaks of valuing her own space. She lives alone, works in Sainsbury's and keeps in touch with friends from previous jobs and from the special school she attended. She seems quite comfortable with one foot in the mainstream world, the other in that of special needs. She plays the clarinet, goes on theatre trips and watches television. But her autism has caused her trouble in romantic relationships, and when a recent boyfriend became over-controlling the careworkers from the women's group had to step in to help. She's now single, but hasn't ruled out 'meeting Mr Right'. But, I ask, wouldn't Mr Right invade the privacy she enjoys? She smiles. 'I don't know. Maybe.'

On the subject of marriage Lauren says, 'I know I'll never be a mum,' but 20-year-old Cara, who works part-time with pre-school children (a job she loves), is not so sure. A good-looking girl who likes parties, music and Manchester United - especially Ronaldo - Cara has also had boyfriend problems. Most autistic people find physical contact acceptable only on their own terms, if at all, and the careworkers helped Cara to understand that she could choose to say no to unwelcome advances.

Kelly, 25, well-presented with careful make-up and a cherry-red jacket, is doing a course in travel and tourism. The others seem reluctant or unable to think beyond the present, but Kelly says she has ambitions; she doesn't like the English climate and wants to work in Spain, in the tourist industry. She has a pleasant, earnest manner, has done a particularly good job of mimicking non-autistic behaviour. However, like all the others she has experienced bullying in mainstream settings and relishes the fact that at the women's group differences are fully accepted. 'People pick on people who are different because they're scared. They're like sheep,' she says. 'Society wants to put you in a box.'

All four women agree it is harder for a woman with autism than for a man, though they can't explain exactly why. This is one of the difficulties of talking to autistic people: they find it easier to talk about concrete realities - bus routes, football, a broken clothes-horse - than about issues or theories. When I ask Cara whether there are any advantages to being autistic, she says it got her to the front of the queue at Thorpe Park. I try to find out more about Lauren's relationship with her family; she says her father is going to fix her clothes-horse, so they have 'a bond'.

The women have few conventionally feminine interests. Selina stacks shelves in the health and beauty aisles at Sainsbury's, but she has no particular interest in those products. All seem to lack that instinctive understanding of social behaviour that to most women comes as naturally as breathing. Nevertheless, they have found ways to operate in society, difficult though these accommodations may have been. The Godalming women's group is an immensely useful response to a newly perceived need: to support women who, however high their academic intelligence, struggle with the social skills that most of us take for granted. More and more women like Lauren, Selina, Cara and Kelly are now seeking diagnosis, relieved to have found an explanation for a set of characteristics that in the past would have been dismissed as 'weird', and relieved to understand why they have had to struggle so hard to conform to normal social expectations of female behaviour.


The women in the internet group certainly support a reassessment of diagnostic criteria. They want to reject the pressure to conform to a limited and limiting range of acceptable female behaviours. 'Bear witness,' writes Judy Singer, 'to the violations of human rights we have suffered: the torment in the playground; the discrimination by employers on social grounds in jobs where social skills should not be part of the criteria; the pressure from families to act normal, to be more feminine, to have children.'


  • The National Autistic Society's helpline is 0845 070 4004. For more information, visit

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