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?

From a November 16, 2006, post on autistic adults in relationships, a couple of questions and comments from readers: A suggestion about a dating agency—–queries from mothers—-and some comments on those who are dating or married to autistic individuals.

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……

First, Happy Mother’s Day to every mother reading this and many more (my own included, of course)!

An essay by Robert Hughes in today’s Chicago Tribune is entitled What Autism Means to a Father and much of what he says strikes home with me as a parent. Hughes captures how a parent feels as he or she strives so patiently to help an autistic child, and how bad a parent can feel when you’re not “doing the right thing,” even though you’re trying your best.

Hughes’ son is 21 years old and, on being asked about the “meaning of the latest statistic on autistic births”—that 1 in 150 children in the US have autism—-Hughes offers this “emotional, seldom-discussed meaning to the 1 in 150 statistic”:

It means that the chances are growing alarmingly that my friend [a work colleague] or someone he knows will one day have an autistic child. And as an old veteran of the autism war, let me tell you what that means.
…..
It means your colleague will sometimes feel so proud of his parenting skill that he would like to brag but doesn’t for fear of making you feel inadequate. He may show up for work after having been up all night with his screaming autistic son, but he’s happy because:

• He never raised his voice.

• He never shook his fist at the boy.

• He dreamed up several different and creative but ultimately futile ways to distract and interest his child, always speaking in soft, firm and reassuring tones even though the kid was running through the house, shouting, biting him and leaping up and down.

He knows you and 90 percent of other parents couldn’t have handled the riot as well as he, so he feels, this morning at least, like a paragon of parenting.

It means, though, that the next morning when your friend arrives at work, he feels as though he belongs in jail. He had spent a second night up with his child speaking in soft, firm, reassuring tones—that is, until he lost it, hit his kid, yelled at his wife, sobbed afterward, and so is now certain he’s the worst sort of monster dad in existence.

He has seen the best and the worst of himself, has been St. Francis and Vlad the Impaler in such quick succession that he’s dizzy with sickening self-discovery.

It’s not easy. When you’re trying to shove a pillow in the general direction of your son’s forehead, as he is trying to slam it on the ground, and your husband is trying to hang onto your son and telling you to get ice, it’s hard to stay in control, no matter how much parent training you do. What parent hasn’t yelled or said some angry, terrible thing and wished that she or he could take it back?

I know it’s not easy being a parent, period. I’ve had a number of conversations with parents of my students in the past few weeks—sometimes with both the parent and student sitting opposite from me in my office—and hearing phrases like “how did this happen?” or “what is going on?” and wishing I had a box of Kleenex handy, remind me, yes, parenting’s not easy for anybody.

One difference for Jim and me as Charlie’s parents is that he has so little language to answer any questions and, due to his neurological make-up, he’s sometimes on the ground even before we realize he’s upset. But rather than continually mourn the fact that Charlie’s different, we’ve tried to change ourselves so we can best help Charlie. Charlie expresses himself plenty in non-verbal ways and part of being Charlie’s parents is understanding Charlie on Charlie’s own terms. A very big part of being Charlie’s parents is accepting him and loving him as he is, while encouraging and supporting him to learn and progress.

I know that the thought of having an autistic child can be scary—even unthinkable—-to a parent who has a young child and has read too much about topics like vaccines. In the May 11th Chicago Tribune article about the not-uncontroversial notion of “recovery from autism,” Julie Deardorff writes:

One of my greatest fears is that autism will break into my house and steal my son. It may be irrational, but it’s there: He’ll wake up one morning and vacantly look through me. He’ll lose his words, open and close doors for three hours, or begin screaming, as if in pain.

Then, bam! The child I know and desperately love will disappear into a mysterious world where I can’t reach him.

Deardorff writes about the “recovery movement” as being “stronger than ever, in part because actress, model and author Jenny McCarthy went public with her own sobering journey after her son, Evan, was diagnosed as being autistic.” Deardorff quotes Talk About Curing Autism (TACA) founder Lisa Ackerman, who says that recovery is

“…….like a car accident, where some individuals may die and some receive different wounds…….You can’t be cured, but you can recover through treatment and time to heal.”

I’m not quite sure how “recovery from autism” can be compared to a “car accident”—-is the process of “recovering” or “curing” a child from autism being likened to getting into an accident? When Ackerman says that “some individuals may die,” is she suggesting that some children “may die” in recovery? Ackerman makes a distinction between “cure” and “recovery,” terms that are usually equated in discussions about autism; I’m not sure that the terms are too different.

Deardorff refers to the “fledgling neurodiversity movement” in discussing autistic adults who believe autism is not a disorder but a difference, and that “‘recovery’ is an upsetting concept because it implies they have something to recover from; it’s a loss of identity.” Autistics like Alexander Planck, founder of founder of WrongPlanet.net and a student at George Mason University, are said to be “high-functioning” and also “functioning member[s] of society,” and are contrasted to severely autistic children who may be non-verbal, have violent and aggressive behaviors, and minimal academic ability.

This is a familiar contrast, between “hfa and lfa” autistic individuals, between those with Asperger’s and those who (like my son) are “classically,” even severely autistic. I understand why there is a need to make a distinction (indeed, the very suggestion that there might be a deep and underlying similarity between an Asperger’s adult and a non-verbal autistic child seems to bring out strong feelings of ambivalence and more). As my son has gotten older, and we’ve more of a sense of his limits and abilities (and of his potential to surprise us), the very things that cause him the most difficulty—anxiety, catastrophic thinking, obsessive-compulsiveness, sensory sentivities—are the same sorts of things frequently cited by some autistic adults I’ve spoken too, and certainly getting to know adults on the spectrum has helped me to understand and help Charlie, in many, many ways.

if there’s one thing parenting has taught me, it’s that, as a parent, I sure don’t have all of the—or any—answers. I know what behavioral strategies I should use; that Charlie has delayed reactions to things that bother him; that there’s a reason he does not want to relinquish his blue fleece coat on a warm day. But sometimes these are all forgotten in the heat of a moment and I feel I’m back at square one. Being Charlie’s mother has been all about learning to see who Charlie is; it’s been a continuing education.

And: It’s been great to be a mother—–to be Charlie’s mother. As Theresa Waldron writes in today’s Atlanta Journal-Constitution about how she feels after getting her 13-year-old year son, Kenneth, to bed,

“As I kissed his cheek and turned out the light, I breathed a sigh of relief. We made it relatively unscathed through yet another day, and my boy is happy.”

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.