The November 13th Newsweek has an article, More Than Just Quirky, about girls and women with Asperger’s Syndrome: Are girls and women sometimes not diagnosed as being on the autism spectrum because they do not have the same symptoms as boys and men do?

Girls, it’s noted, have more “socially acceptable” obsessions—”horse and books,” perhaps, rather than “vacuum cleaners or oscillating fans”:

“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.”

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.

Newsweek also points out that “social mores might also make the disorder more harrowing” for girls, especially as they grow up and are expected to be more ’sympathetic and empathetic than boys.” It’s even noted that “desperation” for some kind of social connections “can make girls with Asperger’s easy prey for sexual predators.”

Over the past few years, it’s occurred to me that more than a few friends and others whom I’ve known—-and women, in particular—are on the autism spectrum. Most of them are undiagnosed; knowing about Asperger’s has helped me to understand why one friend, one instance, used to get so irritated when I started analyzing books and movies (her feeling: just talk about them, no need to “break them down and ask all those questions”). Another related some misunderstandings about what a member of the opposite sex was saying and found herself in a situation that wasn’t so easy to extricate herself from. And, adolescence was the beginning of many difficult years after a childhood that had been comparatively peaceful, especially thanks to parents who were glad to encourage some obsessions and cultivate them.

The Newsweek article opens and closes by referring to a mother, Liane Willey, whose daughter was diagnosed with Aspeger’s. Willey notes that she is “quirky” herself:

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.

I’ve got my own set of “quirks” and—following Charlie’s diagnosis, have wondered if I might be somewhere on the spectrum and, while there are many qualities that Charlie and I share, I don’t think I’m autistic (well, that’s what I think). Has having an autistic child made you more aware of your own “quirks” and obsessions, and possibly of an actual diagnosis?

“[A] sweeping theory of brain development that would change the way mental disorders like autism and schizophrenia are understood”——a “new idea” that “provides psychiatry with perhaps its grandest working theory since Freud, and one that is grounded in work at the forefront of science”: Today’s New York Times uses such grand language to introduce a new theory of psychiatric disorders in which parents’ genes are “in competition.” The theory is the work of Bernard Crespi, a biologist at Simon Fraser University in Canada, and Christopher Badcock, a sociologist at the London School of Economics. Here’s how the New York Times describes it:

Dr. Crespi and Dr. Badcock propose that an evolutionary tug of war between genes from the father’s sperm and the mother’s egg can, in effect, tip brain development in one of two ways. A strong bias toward the father pushes a developing brain along the autistic spectrum, toward a fascination with objects, patterns, mechanical systems, at the expense of social development. A bias toward the mother moves the growing brain along what the researchers call the psychotic spectrum, toward hypersensitivity to mood, their own and others’. This, according to the theory, increases a child’s risk of developing schizophrenia later on, as well as mood problems like bipolar disorder and depression.

In short: autism and schizophrenia represent opposite ends of a spectrum that includes most, if not all, psychiatric and developmental brain disorders. The theory has no use for psychiatry’s many separate categories for disorders, and it would give genetic findings an entirely new dimension.

What’s going on is not so much a “turning on or off” of genes but a “muffling” or “altering” of a gene “with a chemical marker that makes it hard for the cell to read the genetic code.” To illustrate how such an altering of a gene can present itself in seemingly opposite conditions, Dr. Crespi and Dr. Badcock point to Angelman Syndrome and Prader-Willi Syndrome, which both involve genetic disruptions on chromosome 15. Individuals with Angelman Syndrome have a “stiff, jerky gait, absent speech, excessive laughter and seizures.” Those with Prader-Willi Syndrome have “low muscle tone, short stature ….., incomplete sexual development, and a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity.” If the father’s genes dominate in the region of chromosome 15, a child develops Angelman Syndrome; if the mother’s genes dominate in that same region of chromosome 15, a child has Prader-Willi Syndrome: “The former is associated with autism, and the latter with mood problems and psychosis — just as the new theory predicts.”

Dr. Badcock noted similar contrasts in autism and schizophrenia, in terms of eye gaze (while autistic persons fail “to meet another’s gaze,” people with schizophrenia “often believe they are being watched”) and the notion that autistic persons are “mind-blind” and unable to infer others’ intentions and feelings, while (in contrast) “people with schizophrenia see intention and meaning everywhere, in their delusions.”

A number of scientists are quoted in the New York Times article as noting that the theory seems potentially “plausible” while yet “wrong” in terms of many of its details. The theory seems to draw much on theories of autism developed by psychology professor Simon Baron-Cohen, such as his work on mind-blindness and autistic persons lacing empathy, and on the notion that autism is the manifestation of the “extreme male brain,” according to which men are systemizers/engineers, while empathy is associated with the “female” brain. I’ve wondered often about expressions of empathy as displayed by my son; certainly, his tendency to systematize is apparent in his creation of patterns of order for himself. I do rather suspect, at least a few mothers will raise an eyebrow to find themselves even theoretically linked to a “psychotic spectrum,” however much it’s linked with a “hypersensitivity” to mood and feelings.

The male/systemizer and female/empathizer categories don’t fall into place very neatly in my own household. I’m more likely to set a few principles of order around here and Jim is very much, intuitively, attuned to what others are sensing and feeling—-how “sweeping” will this new theory be?

Writes Bridget Orr, a young woman with Asperger’s Syndrome in a piece accompanying It’s not just boys who are autistic, an article in the June 4th Guardian:

Female “invisibility” in the autistic spectrum should be a feminist issue.

Selina Postgate, 53, was only diagnosed with Asperger’s Syndrome last summer; she expresses a similar sentiment:

“Being an autistic woman has been pivotal to everything that’s happened to me. If I’d been an autistic man, my story could have been very different.”

Another woman with Asperger’s, 21-year-old Robyn Seward, also notes “the invisibility of girls on the autistic spectrum and by the association of autistic traits - social awkwardness, for instance - with masculinity.” Four times as many men are affected with autism than are women and there is speculation that autism is underdiagnosed in girls and women.

Returning to Orr’s comment—-imagine autism as a feminist issue……

Researchers at Adelaide’s Women’s & Children’s Hospital and the University of Adelaide, Australia, have found that a mutant gene causes epilepsy and intellectual disabilities specific to women. As noted in Science Daily, the study links a “large family of genes known as protocadherins with a condition known as ‘epilepsy and mental retardation limited to females’ (EFMR).” EFMR is described as “relatively uncommon” and also hereditary,

…….with successive generations of women affected. In just one of seven families studied across the world, 23 women were affected by the disorder across five generations. This discovery will now enable such families to benefit from genetic counselling, including screening for the genetic mutation at pregnancy.

“This is the first time this type of gene has been found to be involved in epilepsy,” Dr [Leanne] Dibbens [one of the leaders of the study] says.

“One of the most important discoveries we’ve made is that women in families affected by EFMR carry both a ‘good’ gene and a ‘bad’ (mutated) gene, while the men carry only the bad gene. For some reason, the men remain unaffected by the condition,” Dr Dibbens says.

“We suspect this may have something to do with the male Y chromosome, but more research will be needed to find out exactly how or why.”

Of course, epilepsy and intellectual disabilities are not found in all autistic women, but these are among the co-morbid conditions that can occur with autism. Dibbens will be continuing her research by studying “larger groups of patients with epilepsy, intellectual disability, and a number of the females affected in these families have autistic features and obsessive features,” as she notes in a May 12th interview with The World Today.

The study is published in Nature Genetics.

ABC’s Nightline is airing a special on girls with autism tonight, on ABC News World News with Charles Gibson at 6:30pm (ET) and on Nightline, Wednesday, January 23, 2008 at 11:35pm (ET/PT). Aspie Dad posts a summary:  

…in a surprising twist, correspondent John Donvan and producer Caren Zucker talk to several researchers and psychologists who believe there are actually more girls with autism in the U.S. than diagnosed. Not only may there be many under-diagnosed girls, according to these experts, but some girls with autism may be assigned some other diagnosis. In fact these girls are often being under-diagnosed or diagnosed with something else. The researchers believe that many of the symptoms are being missed, or that they are just more subtle in girls. Nightline takes an in-depth look at how girls and boys are brought up culturally, and how these differences could contribute to a misdiagnosis in girls, resulting in the harsh reality that we just don’t know how many cases of girls with autism really exist.

While it’s been awhile since there was a girl in Charlie’s autism classroom, the more I have learned about autism, the more I have realized how many past and current women I know are very likely on the autism spectrum. There are friends from grad school (some of whom did not get their degrees and seemed more than loathe to leave the security of being in school; some of whom fretted over their inability to finish the requirements for their degrees and hung around, or who struggled at job interviews and moved from one temporary position to the next). There’s the girl from my childhood who refused to wear wool sweaters and to talk in class, who used a video dating service and was always dissatisfied with her job until, after getting downsized and going back to school to become a technical writer, found work she excelled at and that she liked.

And I’m sure there are many more.

Go here to read ABC’s report on autism in girls.