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 recent post asking if autism is different in girls led to an interesting discussion; Sullivan also noted that the IACC Strategic Plan specifically mentioned “research on females with ASD to better characterize clinical, biological and protective features.” Back in August of 2007, the Telergraph, Charlotte Moore (author of George and Sam and the mother of three sons, two of whom are autistic) interviews four autistic women—one of whom (Lauren) was only diagnosed at the age of 23—-and asks whether the rate of autism in women is lower than that in men is due to women being better able to pretend to be “normal.” The women whom Moore interviews are very much aware of being different and of struggling to “conform to normal social expectations of female behaviour”; they’ve been bullied and been misdiagnosed with psychiatric illnesses or learning difficulties:

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.

Moore also cites a theory connecting autism to anorexia in some women:

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.’

One psychiatry professor has even described anorexia as possibly being the “female Asperger’s. (Conversely, it could be argued that anorexics, while being obsessive-compulsive and having a “distorted pattern of processing information,” are too aware of social, of society’s norms and hyper-imagine what other people might be thinking about their bodies and appearance.)

Moore makes this comment about changing trends in the diagnosis of autism:

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?

I’m going to hazard a less-than-hesitant “yes.”

Help needed for autistic children in Puerto Rico: Please contact Maria.

And a mother recently wrote about her 7-year-old daughter in a post on autism being underdiagnosed in girls and women:

i have a 7 year old daughter that i know is autistic. she has every sign. she is seeing therepists and has seen diff doctors since the age of 3. she dont like clothing touching her skin, she struggles to fit in with other children, she used to keep washing her hands, obsesed with routine and would get very anxiouse and upset if things was different. ……………….there are so many things i could go on forever. is there help out there for girls as she is falling through the cracks and nobody is helping me as a mother. i feel like i,m failing my little girl

Suggestions and support—more than appreciated.

Addendum, 20.15 EST: The BBC News just reported on a yet to be published study that has shown that girls with “mild autism” are less likely to be identified and diagnosed than boys, due to the girls showing different symptoms and “fewer signs of symptoms traditionally associated with autism, such as repetitive behaviour.” And:

The researchers, who have yet to publish their research, found that the girls were more likely to have obsessional interests centred around people and relationships.

However, these interests were more likely to be acceptable to their parents, and therefore tended not to be reported to doctors.

In addition, these types of obsessions were less likely to be discovered using standard diagnostic questionnaires.
The investigators said more research was needed to analyse how autism spectrum conditions manifest differently in the sexes.
…………….
Judith Gould, of the National Autistic Society, said: “We hear from many women who have been diagnosed later in life.
“The way autism is presented in women can be very complex and so can be missed.

“It might be that due to misconceptions and stereotypes, many girls and women with autism are never referred for diagnosis, and so are missing from statistics [my emphasis].

“This may mean that many women who are undiagnosed are not receiving support, which can have a profound effect on them and their families.”

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……

Autism does change everything I wrote last Friday—-looking over the topics of last week’s posts, it seems that a little bit of everything from lipstick to sushi to communication notebooks to psychoanalysis to services for autistic adults to fictional mercury-based substances to how many girls have autism was discussed.

• Yes, No, Brown Noodles!
  On the uses of “yes” and “no” and why there’s nothing like a big bowl of shrimp chow fun.
• Toxic Mom
  Once “refrigerator mothers” were blamed for causing a child to become autistic—-now are “toxic mothers” (who’ve been using too much bismuth-containing lipstick and face make-up) the culprits?
• Looking Ahead: CT Pilot Program for Autistic Adults
  A $1 million pilot program for autistic adults was launched in New Haven, CT, in July of 2006 and currently serves 28 people, among whom is 47-year-old Jonathan Ross, who was only recently diagnosed with Asperger syndrome, and also 24-year-old Shannon McEvoy, who received services throughout her education and is now “trying to figure out what she might do.”
• Stealth Autism
  You don’t “catch” autism though understanding autism—-seeing that a child is autistic—-can happen slowly, stealthily, and then (for me at least) one day you realize, it’s not a catastrophe, not at all.
• It Shouldn’t Happen But…
  A teacher’s assistant, Christopher Blansett of Baldwinsville, NY, is accused of slappig a 13-year-old autistic student and has been placed on administrative leave.
• Thimerasol Is Not a Primary Cause of Autism and Neither Is Mercuritol (Except, Maybe, on ABC)
  ABC is airing a new legal drama, Eli Stone, on January 31st: In the first episode of Eli Stone the former Pharma now “fights for the underdog” lawyer sues his old client on behalf of a mother who believes that, yes, her son became autistic from a vaccine containing the mercury-based preservative thimerasol, which is instead referred to as “mercuritol.”
• Is Autism Underdiagnosed in Girls and Women?
  ABC’s Nightline airs a special report on girls with autism: “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.”
• So Much To Talk About
  Good parent-teacher communication is essential in a school program for kids like Charlie, who struggle to talk and to otherwise communication.
• Iowa Mother Tried to Kill Autistic Son Before Taking Her Own Life
  Investigators have determined that Sheila Tegtmeier, who was found dead in her Ankeny, Iowa, home on January 4th, tried to strangle her 20-year-old autistic son, Rory Jr., before taking her own life.
• Sushi Scare?
  My son Charlie, as I’ve noted more than a few times, loves sushi. So has my worry quotient gone up in light of the recent reports about high mercury levels in tuna sushi?
• Autism Does Change Everything
  ’m not sure if Autism Speaks co-founder Suzanne Wright chose the title of “Autism Changes Everything” for her article in today’s Parade magazine; I suppose the title can be seen as referring to the changes (loss of speech, behavior issues) that Wright saw happen in her grandson. There’s another way to understand the notion of “autism changing everything”: Unlike Wright, I don’t think that autism took my son in its “grip” and turned him into some wholly other child like the changeling stolen by trolls in a folk tale.
• Therapy Moms and Psychoanalysis (for autistic children)
  Martha R. Herbert, M.D., Ph.D., of the Harvard Medical School and Massachusetts General Hospital, uses the phrase to describe mothers of autistic children in an article on WebMD (CBS News) about why psychoanalysis should be part of the treatment for autistic children. And New York city psychoanalyst Susan P. Sherkow, MD, says that psychoanalysis can help parents understand the “‘meaning of what these children are trying to convey.”

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.