The Women’s Rights blog over at Change.org has a post about the Top 10 Moments of Feminism in 2008. The selection of Sarah Palin, Governor of Alaska, as Senator John McCain’s running mate sparked (I guess that’s an understatement) lots of discussion in general, and certainly in the autism and disability community, and in particular regarding Palin’s baby son Trig, who has Down Syndrome. Would you consider the choice of Sarah Palin, special needs mother, as a Top 10 Moment in the annals of special needs families in 2008?

34-year-old Charlene Sawyer has a “rich and dark mezzo soprano voice,” today’s Charlotte Observer notes. Sawyer was not diagnosed with autism until she was 17 years old. She started piano lessons and performing with school choirs at the age of 12, and has been taking voice lessons since she was 14. And

Around this time, she says, her peers made fun of her because they knew she took special education classes. Instead of the socializing she might have enjoyed as a young teen-ager, she immersed herself in her budding gift, learning pieces in Italian, Latin, German and French.

Sawyer has written an outline of her autobiography and now lives in a group home run by the Enola Group, whose director, Fredda Monroe, “says she wants to market Charlene to perform at weddings and to perhaps cut a CD of her singing.”

Heidi Thompson, a friend of Charlene’s who accompanies her to see opera performances in Charlotte and works with her at Studio XI, says Charlene told her she wants to “tell the story of what it’s like to be an artist with a disability.”

“Most autistic people can’t feel or express emotion,” Charlene says. “I do.”

It’s not stated clearly in the Charlotte Observer article: Is it through her singing, through music, that Sawyer is able to “feel” and “express emotion”—usic certainly seems to be such a medium for my son Charlie, from the days when him singing “Frere Jacques” signified that he was upset.

(No, he wasn’t singing that song tonight!)

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?

Saying “a lot happened” in the past two weeks kind of seems like an understatement.

• The Search for Certainty (or, why we’re going to the dentist at 3.15pm)
  An emergency dentist visit for Charlie prompts me to think about why parents so often try to find medical reasons for why something’s going on.
• David Kirby exonerates thimerosal
  Maybe not exactly but the day may be coming……
• Today Show Today on Autism and Vaccines
  I’m briefly interviewed on a feature about vaccines and Dr. Paul Offit.
• A “Crusade Against Autism”—-To What End?
  Do we really need such a “crusade”? . Michael Fitzpatrick (who’s the parent of an autistic child) writes about how such a “crusade” does more harm than good.
• The Great Now What
  Though parents of just-diagnosed children often feel so confused and uncertain, Early Intervention and preschool services and programs are (here in New Jersey, at least) in place. After that, it always seems to be “the great now what” all over again.
• Positively Autistic on CBC News
  A recent CBC News special feature, Positively Autistic, says that “since the early 90’s, an autistic rights movement has sprung up, challenging the official view of autism and working to change how the world sees autism.”
• If It’s Raining, There’s More Autism?
  Another study from Michael Waldman, who wrote an earlier paper about TV causing autism.
• Pop Pop Redux
  A post about the Mugen Pop Pop Blueberry written on Election Night,
• What does it mean to lose an autism diagnosis?
  Does losing a diagnosis mean that one is “cured” of autism?
• Sensory Differences: Research at IMFAR 2008
  Should sensory processing differences be part of the criteria for autism?
• Robert Kennedy, Jr., and the EPA?
  RFK Jr. is under consideration by President-Elect Barack Obama to head the EPA?—Not good if you care about science.
• “Strange” Play As a Marker for Autism in Infants?
  Unusual use of toys in infancy a clue to later autism, according to a stuy published in the October issue of Autism, the journal of the National Autistic Society.
• Adolescence: Not easy, but no need to end it
  Newt Gingrich argues that we should do away with adolescence.
• New Theory About Autism and Genetics
  A new theory argues that arents’ genes are “in competition.”
• Over-diagnosis? Misdiagnosis? Or Just Better Diagnosis?
  Rod Welford, the education minister of Queensland (Australia), attributes the rise in autism prevalence in his state to parents in search of more services for their children—-not.
• Looks Like the Special Needs Mommy Wars Aren’t Over
  is Sarah Palin a potential leader for working mothers of special needs children?
• The Value of Money (the real stuff)
  Charlie learns to count money in the age of the ATM card.

“[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?

Yesterday’s Pathophilia reviews a group of studies (two by Mark and David Geier) about testosterone levels in autistic children. Pathophilia finds that testoterone is not increased in autistic children.

The Cambridge-based Autism Research Centre is also researching hormones in autistic individuals. The Foetal testosterone Longitudinal Study seeks to find out whether elevated levels of foetal testosterone are associated with a later diagnosis of autism spectrum conditions. The Current hormones Project is looking at whether current hormone levels might also be atypical in autism and Asperger Syndrome. And another project is looking specifically at puberty.

Yes, as you may have guessed, I’ve got puberty—so to speak—on my mind.

Charlie’s 11 (and five months, to be precise) and he has definitely entered this new stage of development. He must have shot up some 3 inches over the summer; no pair of long pants really seems to fit him, and Jim’s trying to figure out the best moment to use the electric shaver. Charlie is in middle school—-6th grade, as he IEP notes—-and he is the youngest student in his class, and the tallest. Growth spurts, growing pains, the whole puberty thing. I tend to read most about autism and special needs and neurological disorders and the like, but lately I’ve been throwing in a lot more reading about adolescence in boys.

The mornings have become chilly and it’s still dark when the alarm goes off. Consequently, getting out from under the cocoon warmth of a big fleece blanket has been less and less easy for Charlie, and more and more jarring. Charlie usually snoozes off on the bus and then has to go through a second wake-up and, some days, he’s fallen asleep at school and just can’t wake up.

My very mundane guess about this is that adolescence, with its physical and so many other changes, is proving to be hard and laborious for Charlie. I’m not surprised—when Charlie was a baby, it seemed always to take some sort of extra effort for him to roll over, sit up, scoot, stand. He was nearing 16 months when he started to walk. Talking—and much else—-started ever so slowly for Charlie.

And it’s looking like his passage through the stages of adolescence will be equally slow, full of one setback after another, and just so hard. I still remember when Charlie was about 15 months in daycare and trying, trying, to get on his feet. He didn’t talk at all then and Jim and I felt both a strange wonder mixed with misgiving to hear a girl who was not yet three speak in paragraphs, it seemed, and every other child run, skip, and hurry around, while Charlie carefully made his way across the floor.

Charlie has been quite aware of his own tiredness. For the past few notes he has, on his own initiative, taken himself to bed just after 8.30pm. He still takes melatonin (he tends to get hyper at night) and he usually does not fall asleep for a half-hour plus. These past two nights, I’ve sensed that he just wants to go lie down with his blankets and Leapsters in bed and, I don’t know, stare at the ceiling. He still tucks his hands behind his head for comfort, just how his hands and arms were when he was born. Saturday and Sunday, we’ve been glad that Charlie has no activities he needs to wake up for, and he sometimes wakes up around 7.30 and then is back to sleep till 11.30.

If you could see what a lean, lanky, leggy “long tall drink of water” as Jim sometimes says, that Charlie is growing into, it doesn’t seem surprising that he would be so fatigued. All that growing seems to be consuming vast amounts of Charlie’s energy. Coupled with the greater demands of being in middle school, it’s been a whole new world.

I have been reading Ovid’s Metamorphoses with my mythology class. Ovid opens his long poem by writing of “forms changed into new bodies“: In story after story about the nymph Daphne turned into the laurel tree, of Echo become only her voice among the rocks and Narcissus a flower, of Philomela turned into the nightingale, Ovid subtly make clear, metamorphosis hurts. Daphne’s skin becomes bark, her hair twigs and leaves, her feet grow down into the ground. All is changed and, it’s hoped, some new beauty is born.

And the growing pains—it’s hoped they rise and fade, and rise and ebb.

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.”

Since it was Father’s Day this past Sunday, comedian Jim Carrey’s “autism made a man out of me” (versus a guy of this sort?) remark—reportedly uttered earlier this month at the Green Our Vaccines rally—seemed quite well-timed. Raising Charlie has certainly been a transforming and affirming experience for me, though somehow saying “autism made a woman out of me” doesn’t have quite that, ah, ring. While taking care of Charlie has changed me a lot, one lesson I’ve learned over and over is that much that I’ve previously learned—like how to play the piano—has been hugely important in being Charlie’s mother.

Anyways, while contemplating “what makes a man,” autism, fatherhood, parenthood, mom-hood, gender, etc., etc., this song seems appropriate.

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……