Emily Willingham discusses the recent study that headlines told us showed that girls are "protected from autism." She explains the methodology behind the study, and then asks if the researchers were asking the right questions:
Is the issue that boys outpace girls when it comes to autism rates or that a girl or woman with autism can look a lot different from a boy or man with autism? There is a known diagnostic sex bias: Girls who meet diagnostic criteria for autism are less likely than boys to be diagnosed with it unless their symptoms are quite intense. The authors address the question of differences in how autism looks between girls and boys but focus on the idea that girls might have to show greater severity compared to boys for a diagnosis. But what if instead, they just show a different set of traits?
The girls’ ‘protection’ might not come from protection against autism. Instead, it might come from being autistic in a different way from boys, a way that clinicians have yet to recognize, a way that leads researchers unknowingly to exclude autistic females from studies. It might not be that girls are better at “hiding” behaviors, as some suggest. Instead, their behaviors differ from those of autistic boys in ways that researchers are just beginning to understand.
A big bucket of yes.
I am not surprised that no reporter was willing to admit to having written this article about how some research comparing women, men, and men with Asperger's syndrome supposedly proves that women are better at reading emotions than men are. It's a nearly perfect example of the sexism in how autism research is reported.
Gender bias begins with the design of the experiment itself. Failing to collect data from women with Asperger's syndrome does several things that distort the actual results. It marginalizes autistic women, treating their experience as not significant enough to study and guaranteeing that our understanding of what autism is is shaped mostly by the experiences of boys and men. It also produces results that the scientists expected, and probably wanted to see: when it comes to recognizing emotions, women are faster then men, who are faster than autistic men. This seems to confirm the idea that autism is "the extreme male brain."
The headline, and the article itself, make the common error of confusing what is being measured. The experiment measured reaction time, not how hard it is for men or women to read emotions. Faster does not mean better. More areas of the brain activated does not mean harder.
Scientist Stephen Lawrie knows that by saying colorful things he is more likely to get himself and his work into the paper, and he knows that no one gets in trouble for saying sexist things that brand men as inferior to women:
"We chose relatively strong expressions so slowish blokes could do it," said Prof Lawrie.
"If we had been more subtle, some of the men might have started going wrong..."
Prof Lawrie said that for men to achieve the same results as women in social situations, they probably had to think harder.
But this idea that women are better at "soft" things like feelings and men are better at "hard" things like math, can also be seen as an expression of bias against women.
Please consider the implications of a study from Yale that shows that science professors in the United States are consistently biased toward men and against women:
Discussions of gender bias in science and mathematics have long been complicated by a host of factors — including whether women receive preferential treatment through affirmative action or whether innate differences indeed exist between men and women.
To avoid such complications, the Yale researchers sought to design the simplest study possible. They contacted professors in the biology, chemistry and physics departments at six major research universities — three private and three public, unnamed in the study — and asked them to evaluate, as part of a study, an application from a recent graduate seeking a position as a laboratory manager.
All of the professors received the same one-page summary, which portrayed the applicant as promising but not stellar. But in half of the descriptions, the mythical applicant was named John and in half the applicant was named Jennifer.
About 30 percent of the professors, 127 in all, responded. (They were asked not to discuss the study with colleagues, limiting the chance that they would compare notes and realize its purpose.)
On a scale of 1 to 7, with 7 being highest, professors gave John an average score of 4 for competence and Jennifer 3.3. John was also seen more favorably as someone they might hire for their laboratories or would be willing to mentor.
The average starting salary offered to Jennifer was $26,508. To John it was $30,328.
1) Sexism is one of the fundamental problems in society. Bias against women is so deeply rooted that it becomes part of many things that seem unrelated, like autism. Girls are less likely to be diagnosed with autism, and less likely to be diagnosed early. Women are expected to be the primary caretakers of children and end up being disproportionately impacted when a couple has a child with special needs.
2) Most bias is unconscious. These professors were probably not motivated by a deliberate desire to hurt "Jennifer" or to reward "John." They just saw John as more qualified and worth investing more in than Jennifer, when the only difference between them was gender. Most of us see ourselves as being above that kind of sexism. Most of us believe that we never act out of racism. Most of us are wrong. And most of the time, when we subtly favor one group over another, we are not aware that we are doing it.
3) Members of less favored groups are biased against themselves. One of the most striking and important conclusions of the study is that women were just as biased against Jennifer as their male colleagues. Women can still hold the unacknowledged belief that men are better scientists. Gay men can still get attention by declaring themselves opposed to gay marriage or gay parenting. Autistic people carry the same bigoted beliefs that we are dangerous and incompetent that neurotypical people do.
4) Gender still matters. We all need to see more images of women as scientists. We need more women in elected office. And we need to make sure that, when we talk about autism, we listen to both men and women.
One of the most striking things about autism is the gender disparity in diagnosis. In the latest numbers from the United States CDC, boys are more than four times more likely to be diagnosed with autism than girls. In some studies from the United Kingdom, where Simon Baron-Cohen's theory of autism as "the extreme male brain" is even more influential, men have been nine times as likely as women to be given the autism label.
Current genetic research does give some reason to believe that males are actually more likely to develop autism than females are, but there is little doubt that much of difference is in how doctors treat boys and girls.
Annette Lewns has two autistic children. Her son Ryan was diagnosed when he was three. Her daughter Rachel had to wait until she was nine:
"What angers me is that for years I was dismissed by doctors purely because Rachel was a girl. Ryan was spotted very quickly because the autism symptoms that doctors look for are so male-orientated," said Lewns. "But Rachel's autism was hidden unless you knew where to look for it.
"Rachel could express herself, she had a couple of friends and understood emotions if someone was at an extreme: really upset or really happy. But you didn't really have to look too hard to see she didn't genuinely understand emotions or relationships: she was just mimicking scripts and scenarios from TV."
"The doctors failed time and time again to see through her coping strategies. I fought for years but I was confronted with a wall of disbelief and scepticism. They were simply unable to understand that a girl might present differently to a boy."
While Ryan's condition was acknowledged by their local authority, and he is now at a specialist school, Rachel continues to struggle at a mainstream school. "Ryan is being taught all sorts of tools and techniques to cope with his condition but Rachel is not," said Lewns.
An international program called Autism in Pink is doing research on this issue.
I also strongly recommend the Autism Women's Network.
I'm a fan of The Thinking Person's Guide to Autism. I mostly try not to write about people who I don't think you should pay attention to, and I certainly think you should pay attention to them. I think it is the best site for parents of autistic children that I am aware of, and I think most of what they publish is of interest to autistic adults, too. Without exception, I think the editors and affiliate editors are intelligent, informed, kind, and important individuals. Much of what they do, both in terms of reporting and as citizens of the autism community, is essential.
Before continuing, I need to make some overdue apologies. Several of the TPGA editors and affiliates have reached out to me with kindness and I have mostly responded with anger and outrage. I've lashed out at a lot of people wrongly in waging a battle with some personal demons, as recently as yesterday, and I'm sorry for that. I should have been nicer. I will try harder to do better in the future.
Yesterday, I was troubled by this post, which is obviously extremely well-intended. I was bothered because it did something I see happening over and over in the online autism community: it pretended that autistic people are mostly female.
And this is very far from being the case. According to the best and most recent data from the United States Centers for Disease Control, about 1 out of every 252 girls has autism:
And about 1 out of every 54 boys has autism:
As I said when they came out, I think that these numbers are seriously skewed and that many, many girls avoid diagnosis.
But the current ratio is 4.6 boys to 1 girl. And included in the boys are minority populations that are also notoriously under-diagnosed. So even when we get the numbers right, I think it's very likely that we will still have two or three times as many autistic boys as autistic girls. And I don't think it's likely at all that it will ever be close to a 1 to 1 ratio.
So it matters, when doing autism things, that you not only include autistic people, but that some of them be male. And, unlike the IACC so far, that some of them be female. Of course, there should be specialty organizations like the Autism Women's Network, which I am also a fan of, but, otherwise, I think it's important that both genders be represented.
I would guess that the most typical TPGA reader is the mother of an autistic son. So, although most readers are female, the perspective of male autistics is probably most relevant to most of them.
Thus, I wish TPGA had not established an original editorial team which was 100% female and did not currently have a team which is 90% female. I wish there were more male contributors to their book, and to their website. I wish, when Shannon had written this nice post about her son's need for autistic role models, she had linked to this piece or included one male among the list of writers she mentions (she does link to the TPGA Slice of Life series, which included almost as many males as females)
And I wish they had considered the possible message sent to most autistic teenagers when a piece is published about feeling worthless and the editors do not consider the contributions of anyone of their gender "publishable." There are excerpts from an essay included-- it did not occur to anyone to ask a male writer for permission to quote from an existing piece?
Or even just to say "This one is for autistic girls"? (A note to this effect was added later, although not marked as an update)
It's one thing to be rhapsodic about an autistic woman seeing representations of herself on TV. It's another to recognize that one might oneself sometimes be denying autistic boys the same opportunity.