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August 15, 2007

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.

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Comments

What do you say to parents who write that their baby was fine before getting the MMR vaccine, and then started spinning?

What do I say to them? Nothing, unless they ask me what I think. Parents of children with autism get enough people getting in their face telling them things without invitation.

If they ask me, I tell them that the scientific evidence of mercury in vaccines in the U.S. causing autism does not exist, that the hypothesis has been debunked, and that their child's condition has a different cause based on the evidence.

Can't it be the active ingredients in vaccines, and not the mercury?

I have two sons with autism as well (12 and 6). They've never displayed the same symptoms even though they both fit under the autism-spectrum-disorder umbrella. It rather galling to hear people mouth-off about what they think they know about the problem.

One thing I can tell you with certainty is that it's not the end of the world. Keep loving your children and keep them engaged with the world and things will improve over time.

Marc - thanks. It's already great, despite it all.

Eric - from what I understand, it is profoundly unlikely to be the vaccines at all, but there is more evidence against specifically the mercury preservative hypothesis due to dates of discontinuance of use. Out of caution, I am less willing to stick my "chin" out against vaccine theories categorically than against the mercury-preservative hypothesis. Others may be more willing. Problem one with most vaccine theories is the post hoc ergo propter hoc problem, particularly since autism rates have increased as mercury preservative use has been curtailed, and since diagnoses occur earlier now than before the mercury preservative thimerosal was discontinued in the U.S. out of abundant caution.

Marc - thanks. It's already great, despite it all.

Eric - from what I understand, it is profoundly unlikely to be the vaccines at all, but there is more evidence against specifically the mercury preservative hypothesis due to dates of discontinuance of use. Out of caution, I am less willing to stick my "chin" out against vaccine theories categorically than against the mercury-preservative hypothesis. Others may be more willing. Problem one with most vaccine theories is the post hoc ergo propter hoc problem, particularly since autism rates have increased as mercury preservative use has been curtailed, and since diagnoses occur earlier now than before the mercury preservative thimerosal was discontinued in the U.S. out of abundant caution.

Bruce, thanks for filling in with such an informative post!

From what I understand, current theory is that the reason some kids seem to develop normally and then lose speech at 18 months to two years old is because the developing brain is handing off speech function from one section to another at that age. If the damage is in the "new" section of the brain, then symptoms don't manifest until it comes online at that age. If that's true, then what we're seeing is a correlation (MMR vaccines happen to be given at the same age as this particular brain development milestone) rather than causation. Additionally, the more they're studied, the more researchers have found autistic symptoms in seemingly normally developing children who manifest at 18-24 months instead of birth. A lot of interesting studies have focused on younger siblings of autistic children, who are more likely to develop autism themselves and therefore make excellent research subjects.

"correlation rather than causation"

Next thing you know, you'll be telling us that the decline in the population of pirates hasn't caused global warming!

memyself- the pirate population is not in decline, it has shifted north.

Since so much of how we perceive autism is about social behaviour it is unsurprising that it becomes gender stereotyped. My son's class consists of 7 boys and 1 girl, all with varying degrees of autistic behaviours. As we learn more about the neurological features of the disorder we will have more gender neutral ways of diagnosing it.

Having worked with autistic children for 15 years, I have to tell you that many many report their child having "his" vaccines and that night screaming and holding their heads. Almost all were brunette with brown eyes that had this reaction. Can you explain that?

Feathers McGraw -

I was referring to spinning, and so the need to use a different section of the brain for speech wouldn't explain a baby spinning after getting the MMR vaccine.

Disabled Rights revolves around some basic perceptions of normality which finds humans who they are because the speak language. Autism frustrates this view of cognition and raises a very deep view of human worth. Is human worth primarily language cognition?

Autism secondly profoundly raises connection processes that while language like are also emotion work processes as well as language. That is when we connect we look each other in the eye. We then find autism challenges two kinds of really profound concepts of human worth, language work and emotional connection. Is the work of human thinking solely what we find in these two avenues of 'neurotypical' activity?

I would suggest contrarily that we don't understand language as a means of connecting people, and we don't understand what is the meaning of emotion. Most autistic people feel emotions, can think emotions, but use the tool in a different mode of living. This then is the most profound of challenges to the state as republics are founded. A vote to represent democracy cannot be true to a democratic republic that autistics persons might be part of. The conceptual basis of democracy is the public dialogue, the house of representative debates. This concept of connection by language, and by motivating feelings must surely be false because it's foundation has not autstic meaning.

Hi, I have a few questions about autism and was hoping you could give me a brief and easy explanation. Many of the sites I find are to complicated and I don't understand them. I just need a decent straight forward answer. I have this project and here are my question.
Is autism found in one type of diversity or gender more than the other?
Is it found more likely in certain groups of people (religious groups, ethnic, etc.)
Is autism a dominant, recessive, sex linked, or a mutation of the genes or is it unknown?
Which chromosome does it occur on?

Thank you for reading this. Hope you can answer my questions.

Great post and lots of insightful comments.

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