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
More Than Just ‘Quirky’
Because they may have different symptoms than boys do, some girls with Asperger’s syndrome don’t get diagnosed.
Liane Willey watched from behind a two-way mirror as doctors at the University of Kansas performed a series of psychological tests on her 5-year-old daughter. From the day the girl was born, Liane had worried about the child’s behavior: as an infant, she would not suckle. As a toddler, she bit other children and refused to let anyone hug her. Doctors had continually assured the young mother that her daughter was normal, if a bit quirky. But with each passing year, ‘quirky’ had become less apt a description. By the age of 5, she had no friends and a profound obsession with monkeys. “If another kid came to school with a toy monkey or something with a monkey picture on it, she would freak out,†Liane says. “She would try to take it away from the other kid, because she didn’t get that not everything ‘monkey’ was hers.†Liane had been a quirky child herself, and knew the difficult path that lay ahead for her daughter. “Growing up, I tried everything—psychotherapy, group therapy, antidepressants—none of them gave me a better sense of the world or my place in it,†she recalls. “For her, I wanted something that would actually work, and I wanted them to put a name to the angst once and for all.†Doctors were hoping the psychological tests would yield-up some clues.
The “Sally-Anne†test involved a simple skit: ‘Sally’ put a marble in the basket and then walked away. Once she was gone, ‘Anne’ took the marble out of the basket and put it in a box. When ‘Sally’ returned, the doctors asked where she would look for her marble. Anyone over the age of 5 is expected to know that Sally would look in the basket first, because she doesn’t know that her marble has been moved. Expecting Sally to look in the box first suggests that the test-taker doesn’t understand that other people don’t know everything they know, and vice versa. Psychologists refer to this as a “theory of mind,†and people who fail the Sally-Anne test are said to lack one, meaning they can’t anticipate other people’s thoughts and feelings. Liane’s daughter failed the Sally-Anne test, along with every other assessment meant to screen for Asperger’s syndrome, a high-functioning autism spectrum disorder, which the doctors promptly diagnosed her with. The good news was that they had caught it early.
It’s not uncommon for girls with Asperger’s to go undiagnosed well into adulthood. Like heart disease, this high-functioning autism spectrum disorder is 10 times more prevalent in males, so doctors often don’t think to look for it in females. But some experts have begun to suspect that unlike heart disease, Asperger’s manifests differently, less obviously in girls, and that factor is also causing them to slip through the diagnostic cracks. This gender gap may have implications for the health and well-being of girls on the spectrum, and some specialists predict that as we diagnose more girls, our profile of the disorder as a whole will change. Anecdotally, they report that girls with Asperger’s seem to have less motor impairment, a broader range of obsessive interests, and a stronger desire to connect with others, despite their social impairment.
But much more research is needed before those anecdotes can be marshaled into a coherent picture. “Ultimately, we might want to look for different symptoms in girls,†says Katherine Loveland, a psychiatry professor and autism researcher at the University of Texas in Houston. “But we have a lot more questions than answers at this point.†Answering those questions has proven a tricky proposition: to draw any real conclusions, many more girls will have to be studied. And that means more of them will have to be diagnosed in the first place.
Anyone who knows a boy with Asperger’s syndrome might tell you that the disorder (characterized by obsessive interests and an inability to connect with others) is impossible to miss. For starters, the things most boys get obsessed with are difficult to shrug off as quirky. Imagine, for example, a 7-year-old boy with encyclopedic knowledge of vacuum cleaners or oscillating fans but almost no friends or playmates.
Now, replace oscillating fans with something more conventional – say horses or books – and imagine a girl instead of a boy. A horse obsession, even one of frightening intensity, might fly under the radar. “Girls tend to get obsessed with things that are a little less strange,†says Elizabeth Roberts, a neuropsychologist at the Asperger Institute at the New York University Child Study Center. “That makes it harder to distinguish normal from abnormal.†That observation is consistent with a 2007 study of 700 children on the spectrum, which found that girls’ obsessive interests reflected the interests of girls in the general population; the same was not true for boys.
In addition to more socially acceptable obsessions, Roberts says, the Aspie girls she sees are more adept at copying the behaviors, mannerisms and dress codes of those around them, than Aspie boys tend to be. “From my personal experience, they seem to have a greater drive to fit in than boys with Asperger’s do,†she says. “So they spend a lot of time studying other girls and trying to copy them.†When social settings change, this can spell disaster. “As you move from high school to college, or from one group of friends to another, you have a whole new set of rules to learn,†said one Aspie woman who asked not to be named. “Not only do you lose your own identity, but if you end up surrounded by the wrong people—mimicking their behavior without understanding the motivations behind it can lead to big trouble.â€
Of course, it’s not just different symptoms that stymie diagnosis—cultural conditioning may also play a role. What looks like pathological social awkwardness in a little boy can seem like mere bashfulness or just good old-fashioned manners in a little girl. “We tend to notice shyness in boys as ‘off,’†says Loveland. “In girls, we can almost see it as a good trait.†And while boys are often diagnosed when they begin expressing their frustration as aggression and find themselves in trouble at school, girls —even Aspie girls—learn to internalize their feelings, not to act out, which can make them more anxious and less noticeable at the same time.
But even as they effectively mask Asperger’s in girls, social mores might also make the disorder more harrowing for them. As they approach adolescence, girls face greater pressure to be sympathetic and empathetic than boys do. “By the time girls reach junior high, their social networks have become extraordinarily complex, and Aspie girls can’t keep up with all the nuances,†says Janet Lainhart, a doctor at the University of Utah’s Brain Institute. “Boys struggle socially as well, but their peers mature much slower so their inability to empathize is seen as more forgivable.â€
Not everyone is persuaded that the symptoms of Asperger’s differ between boys and girls. Ami Klin, director of Yale’s autism research group cautions that no Asperger’s trait can be defined as gender-specific quite yet. “It’s a possibility,†he says. “But I don’t know anyone who has tested it and I can think of many exceptions to any rule you come up with about what narrow interests or other traits each gender has.â€
What everyone does seem to agree on is that without diagnosis, girls are unlikely to get the support—including special education and behavioral therapy—that has proven so helpful to boys with Asperger’s. Even worse, their desperation for human interaction—combined with their inability to gauge the intentions of those around them—can make girls with Asperger’s easy prey for sexual predators. “That is a real distinction and my real concern for girls on the spectrum,†says Klin. “That they will be more susceptible to rape, abuse and drug addiction because of their social deficiencies and because they aren’t getting the right guidance.â€
Despite the urgent need for more research, Klin says that scientists who study ASDs have effectively orphaned this population. Because there are so few of them, girls are often yanked from studies altogether so that they don’t muddy up the data. As a result, only a very small body of work addresses the Asperger’s gender gap, even though such studies could lead to better diagnosis of both autism and Asperger’s.
Preliminary genetic analyses suggest that autism may be caused by different genes in each gender; and at least one MRI study has found differences in the brain anatomy of boys and girls on the spectrum. Simon Baron-Cohen, a renowned autism researcher, has shown that high levels of fetal testosterone may also play a role. But that work has yet to be replicated, mainly, say Loveland and others, due to a lack of funding or interest. “A lot of people see Baron-Cohen’s work as ‘politically incorrect,’†says Loveland. “Any time you start talking about a biological basis of sex differences, you are looking at controversy.â€
Meanwhile, many schools and clinics that work with children on the spectrum have begun forming girls-only clubs in an effort to build better support systems for girls with Asperger’s. Lainhart has created a group at her Utah practice. The first things her girls, who range in age from early teens to late 20s, wanted to know: how to plan a dinner party and how to hold a dance. “They really want to understand how to do these very-female things, they just need the guidance to get there,†she says.
Of course, getting that guidance depends on getting the right diagnosis early on. And it turned out that Liane’s daughter wasn’t the only one to fail the Sally-Anne test that afternoon. Liane herself had not been able to distinguish between what she knew and what Sally knew. Doctors diagnosed her right alongside her daughter. Liane says that diagnosis changed everything for her. “It was like a light bulb went off,†she says. “I was able to seek out the right kind of treatment, and after a lifetime of mimicking others, finally find my own identity.†And early diagnosis has helped her daughter (now a healthy teenager) avoid many of the pitfalls that Liane herself fell prey to. “Her experience has been totally different from mine,†she says. “She’s had special education and behavioral therapy from the time she was a young girl, and if I introduced you to my three daughters today, you wouldn’t be able to tell which one has Asperger’s.â€
Source: Â http://www.newsweek.com/id/168868
The following is an excellent article and highly enjoyable read. Though published in September, 1999, remains highly regarded and circulated.
http://www.amazon.co.uk/Women-From-Another-Planet-Universe/dp/1410734315/ref=pd_sim_b_9
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.
http://www.authorhouse.com/BookStore/ItemDetail.aspx?bookid=16210
“Females with Asperger’s Syndrome (Non-Official) Checklist”:
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“Rudy Simone: I’m Right Here: Life As An “Aspergirlâ€:
https://www.aspie-editorial.com/2011/01/22/rudy-simone-im-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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“Celebrating Females on the Autism Spectrum”:
https://www.aspie-editorial.com/2011/01/22/celebrating-females-on-the-autism-spectrum-2/
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“Is Being Female Protective Against Autism?”:
http://www.forbes.com/sites/emilywillingham/2013/02/25/being-female-protective-against-autism/
 
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Pregnancy “Extreme Morning Sickness Could Lead To Lifelong Emotional/Behavioral Disorders in Kids/Hyperemesis Gravidarum Links & Information”:
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“DIY Mommies”:
http://www.diymommies.com/creating-your-own-baby-quilt/
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“Free Baby Quilt Patterns”:
http://quilting.about.com/od/babyquiltpatterns/Free_Baby_Quilt_Patterns.htm
1. What to expect when you’re expecting
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Baby Month Markers(for photographs):
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Pixar Alphabet:
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La Redoute Babywear:
http://www.laredoute.co.uk/children-baby.htm?page=1&nbproduits=40
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Mothercare:
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Early Learning Centre:
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Essential Baby:
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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.