NYT: What Autistic Girls Are Made Of
Emily Bazelon of the New York Times, August 5th, 2007:
According to the Centers for Disease Control, there are about 560,000 people under the age of 21 with autism in the United States. (Adults aren’t included because there is no good data on their numbers.) If 1 in 4 are female, the girls number about 140,000. The C.D.C. estimates that about 42 percent of them are of normal intelligence, putting their total at roughly 58,000 (with the caveat that these numbers are, at best, estimates).
Because there are so many fewer females with autism, they are “research orphans,” as Ami Klin, a psychology and psychiatry professor who directs Yale’s autism program, puts it. Scientists have tended to cull girls from studies because it is difficult to find sufficiently large numbers of them. Some of the drugs, for example, commonly used to treat symptoms of autism like anxiety and hyperactivity have rarely been tested on autistic girls.
This gender dynamic doesn’t necessarily affect girls with Asperger’s when they are very young; if anything, they often fare better than boys at an early age because they tend to be less disruptive. In 1993, Catherine Lord, a veteran autism researcher, published a study of 21 boys and 21 girls. She found that when the children were between the ages of 3 and 5, parents more frequently described the girls as imitating typical kids and seeking out social contacts. Yet by age 10, none of the girls had reciprocal friendships while some of the boys did. “The girls often have the potential to really develop relationships,’ says Lord, a psychology and psychiatry professor and director of the Autism and Communication Disorders Center at the University of Michigan. “But by middle school, a subset of them is literally dumbstruck by anxiety. They do things like bursting into tears or lashing out in school, which make them very conspicuous. Their behavior really doesn’t jibe with what’s expected of girls. And that makes their lives very hard.”
Hi, everybody. My name is Bruce Godfrey and I blog as "Crablaw" from central Maryland. I do thank Lindsay Beyerstein for the opportunity to contribute here, particularly in these August doldrums while Lindsay is facing a few scheduling traffic jams outside the blogosphere.
In terms of understanding autism, we in 2007 have little right to scoff at our ancestors who treated diseases with leeches, as our understanding of this surprisingly prevalent variety of neurological and development disorders awkwardly called "autism-spectrum disorders" stands at approximately the blood-letting stage. A great deal of misinformation about this "set of disorder sets" is available, some of it pushed by people with well-intentioned and/or venal agendas. Some have heard that mercury in vaccinations has a scientific causal link to autism; it has no actual link but rather a sloppy pseudo-scientific one, i.e. pure gahhr-bazzh. While a skeptical, evidence-demanding approach to life is always of merit, it is particularly important when one is dealing with disorders about which little is known but a great deal of money and human emotion hangs in the balance.
My interest in the topic is personal, so a little of our personal background. Both of our sons, Sam 4, Noah 2, are autistic. Their personalities are quite different; Sam is fairly narrowly focused, quiet verbally and easily frustrated but never manic, whereas Noah is a ball of whining energy and eager beaver chatter to himself We assume that both boys developed autistic neurology through genetics, though no one else in the family has a diagnosis. While the adult men of my family, myself included, tend towards "nerdish" ways and are mostly introverted, we do not stand on the autistic spectrum. Among my wife's family, ditto except perhaps for one uncle. We do not live in a part of the country where autism is particular prevalent; the highest rates of autism in the U.S. are said to be in Silicon Valley, i.e. Santa Clara County, CA, though the extent to which sample bias, confirmation bias, better testing, a more educated pool of parents or other factors may cast doubt on that statistic's weight is unclear.
It is very likely that different genetic conditions cause the many of the same or similar symptoms of the different autism spectrum disorders. Autism is more common among boys than among girls but not overwhelmingly so in the manner of, for example, hemophilia, adding to the likelihood that some autism results from Y chromosome recessive genes while other autistic manifestations may not. It is also possible - indeed practically guaranteed - that our own perceptions are gender-skewed, both on what "normal" [sic] is for either gender or how different autism-spectrum disorders may play out differently (or similarly) for girls and boys.
Out of respect to the copyright of the NYT, I did not copy more of the article but there is fascinating information in the article about how girls with autism are more likely to excel at reading than at math - contrary to the gendered stereotype about autism and math - and that girls' autism may be underdiagnosed due to their comparatively stronger social cue perceptions than those of autistic boys. Put more simply, autism as a disorder has been "gendered" to male social styles and thus is under-diagnosed and under-treated among less "boyish" but equally autistic girls. In this sense, autism may be said to be a feminist issue insofar as sexist assumptions, if not sexist specific intent, damages the timeliness, effectiveness and scope of health care and developmental assistance for autistic girls and autistic women.
It may be a bit condescending for a neurotypical, i.e. non-autistic, male and father of two autistic boys to attempt to convey what it means to be an autistic woman - particularly so when some autistic women do in fact speak for themselves online and elsewhere. So I would respectfully direct the reader to Getting the Truth Out, a site constructed by an autistic woman who of course represents her own experiences and perspective, but who has links to other autistic bloggers and sites. A debate noted in that linked site continues in the autism community along the lines of the "cure" model vs. the "disabled citizens' rights" model. I disclose my bias as being militantly in favor of the latter model.
Again, many thanks to Lindsay for this exceptional opportunity to contribute here.