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First Published Wednesday, 27 May 2009

Charlotte Moore

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.

The two psychologists who first investigated the condition (independently of each other) were Leo Kanner and Hans Asperger. The work they did more than 60 years ago set the pattern for the way we still see autism, and it happened that Kanner studied few female patients and Asperger none at all. Could it be that this led to a false assumption that autism was overwhelmingly a male disorder? And do autistic women, as Frith suggests, often fly beneath the radar because of their ability to mask their difficulties?

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.

When the first of my two autistic sons was diagnosed in 1994, someone told me that autism was more prevalent among Jews (my sons’ father is partly Jewish). This notion probably arose because many mid-century psychiatrists and psychoanalysts were Jewish, so interest in and awareness of unusual mental states was higher among Jewish families, who were therefore more likely to seek consultations for their children. Similarly, Asperger believed autism to be more prevalent amongst the professional classes, failing to see that it was simply more likely that such a parent would seek his advice. We now know that autism is not related to ethnicity, income or social class. Are we about to find that it is not as strongly linked to gender as has been supposed, that there are more autistic women out there than we imagine?

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.’

Understanding of autism in males has increased dramatically over the past couple of decades. Now, it seems, it is time to take a fresh look at the way autism manifests itself in women.

  • *The National Autistic Society’s helpline is 0845 070 4004. For more information, visit www.autism.org.uk
Why Girls with Asperger’s Might Not Be Diagnosed

More Than Just ‘Quirky’

Because they may have different symptoms than boys do, some girls with Asperger’s syndrome don’t get diagnosed.

White Star Girl


Women From Another Planet?: Our Lives in the Universe of Autism

Jean Kearns Miller, Editor

Mention the word autism and the room suddenly turns silent. It’s the dreaded A word.

People’s attention turns to late night TV public service ads declaring that autistic children are “imprisoned” by autism and need curing at all cost. Recent autobiographies have helped dispel this dire description by suggesting that autism is not a prison and that the door is unlocked and you’re free to come in. Women from Another Planet? moves beyond these autistic life stories in important ways. It’s a collection of stories and conversations, all of them by women on the autism spectrum who speak candidly, insightfully, and often engagingly about both their gender in terms of their autism and their autism in terms of their gender. It is written not just for parents and professionals, like the other works, but also to those women still searching for ways to understand the unnamed difference they live with, as well as the wider audience of discerning readers. If you enter the unlocked door of these Women from Another Planet? you may end up with a question mark or two about your planet. Is normalcy really all it’s cracked up to be?

Girls Growing Up on the Autism Spectrum
Shana Nichols
With Gina Marie Moravcik and Samara Pulver Tetenbaum


Aspergirls: Empowering Females with Asperger Syndrome
Rudy Simone
Foreword by Liane Holliday Willey
22 Things a Woman with Asperger’s Syndrome Wants Her Partner to Know
Rudy Simone
Asperger’s in Pink: A Guide for Raising or Being! a Girl with Asperger’s Syndrome
Julie Clark
Safety Skills for Asperger Women
Safety Skills for Asperger Women: How to Save a Perfectly Good Female Life
Liane Holliday Willey
Foreword by Tony Attwood
Pretending to be Normal
Pretending to be Normal
Living with Asperger’s Syndrome
Liane Holliday Willey
Foreword by Tony Attwood
Emergence: Labelled Autistic
Temple Grandin  Margaret M. Scariano
Thinking in Pictures
Temple Grandin
The Way I See It
Temple Grandin
Animals in Translation
Temple Grandin and Catherine Johnson
[DVD]Temple Grandin
The People in a Girl’s Life
How to Find Them, Better Understand Them and Keep Them
Martha Kate Downey and Kate Noelle Downey
The Girl Who Spoke with Pictures
Autism through Art
Eileen Miller
Foreword by Robert Nickel MD
Illustrated by Kim Miller
Parenting Girls on the Autism Spectrum
Overcoming the Challenges and Celebrating the Gifts
Eileen Riley-Hall
Foreword by Shana Nichols
Unwrapping the Mysteries of Asperger’s: Guide for Girls and Women with Asperger’s Syndrome
Kristi Hubbard
Nobody Nowhere: The Remarkable Autobiography of an Autistic Girl
Donna Williams
Somebody Somewhere
Donna Williams
Like Colour to the Blind
Donna Williams
Not Just Anything: A Collection of Thoughts on Paper
Donna Williams
Everyday Heaven: Journeys Beyond the Stereotypes of Autism
Donna Williams
Nobody Nowhere: A Music CD
Donna Williams
Life Behind Glass: A Personal Account of Autism Spectrum Disorder
Wendy Lawson
Foreword by Patricia Howlin
Life and Learning with Autism Spectrum Diffability
Wendy Lawson
Build Your Own Life: A Self-Help Guide for Individuals with Asperger Syndrome
Wendy Lawson
AS Poetry: Illustrated poems from an Aspie Life
Wendy Lawson
Illustrated by Alice Blaes Calder
Lucy’s Story: Autism and Other Adventures
Lucy Blackman
Congratulations! It’s Asperger Syndrome
Jen Birch
Finding a Different Kind of Normal
Misadventures with Asperger Syndrome
Jeanette Purkis
Foreword by Donna Williams
Do You Understand Me?: My Life, My Thoughts, My Autism Spectrum Disorder
Sofie Koborg Brosen
Asparagus Dreams
Jessica Peers
The Aspie Girl’s Guide to Being Safe with Men
The Unwritten Safety Rules No-one is Telling You
Debi Brown
Foreword by Sarah Attwood
Asperger’s and Girls
Tony Attwood  Teresa Bolick  Catherine Faherty  Lisa Iland  Temple Grandin  Jennifer McIlwee Myers  Ruth Snyder  Sheila Wagner  Mary Wrobel

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“Asperger’s Syndrome In Women: A Different Set Of Challenges”:

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“Girls and Asperger’s Syndrome”(1 Comment):

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“List of Asperger Traits”:

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“Rudy Simone: I’m Right Here: Life As An “Aspergirl”:


“Interview re Females on the Autism Spectrum: Rudy Simone and Kristen Desmond on the Condition, Employment and Relationships”:



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comments (1)

1. J left…

Tuesday, 15 September 2009 9:48 pm

The better question is why so many people are being labeled autistic. Maybe some people don’t want to be pathologized and treated as impaired just because some people don’t understand them. You may notice that many of the greats society now tries to pathologize don’t proclaim themselves to be “aspies” and go around going, “Oh, Asperger’s awareness, Asperger’s awareness!” They’re out doing their thing and not telling sob stories about sitting alone at the lunch table and enduring some rude remarks. I’m not saying that there aren’t some legitimate “Asperger’s” cases, but going on a witch hunt is inappropriate and destructive. Except in extreme cases, let people live their lives.