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.
It's wonderful that NPR talked to an actual autistic person when doing this story about the shortage of autistic brain tissue for research.
It's very sad that that autistic man, Jonathan Mitchell, views his own brain as "damaged":
Here's how Mitchell describes life with an autistic brain: "It's prevented me from making a living or ever having a girlfriend. It's given me bad fine motor coordination problems where I can hardly write. I have an impaired ability to relate to people. I can't concentrate or get things done." He adds that part of his day is spent engaging in a self-stimulatory behavior that involves shaking a pencil and some shoelaces at a certain frequency while he rocks back and forth.
Mitchell lives in Los Angeles. He has a degree in psychology and used to work, at times doing things like data entry. "But then I got fired from so many jobs, I ended up retiring and being supported by my parents," he says. Mitchell says he was fired because employers thought he was too loud, made too many mistakes and smelled bad.
Like a lot of people with autism, Mitchell is unflinchingly honest. When I say he sounds angry, he says "Yes, I'm very angry and very embittered." When I ask why he decided to talk to me, he responds that he's "a little self-centered and superficial and a little bit of a publicity hound."
What's the worst part about having an autistic brain? "The celibacy," he says. "The loneliness. The isolation."
It's even sadder that NPR did not talk to anyone who thinks autistic people are not broken or that we might have something to contribute to research before we die.
Just a quick explanation. I could keep posting pieces from people explaining that there is no link between planned violence and autism. There have been lots of good things either written by or including interviews with people I like and respect.
But here's the thing.
Research shows that corrections don't work:
In multiple studies included in the new review, researchers presented people with a fictitious news report about a warehouse fire that was initially thought to have been caused by negligent storage of gas cylinders and oil paints. The participants were then offered an explicit retraction of the information about the cause of the fire, but even after reading the correction, only about half of those in the study reported that the initial news account was wrong. The finding suggests that the original false belief may stick 50% of the time, despite a correction.
Why? One reason may be that the correction itself repeats the inaccurate information — and repetition is known to strengthen memory. Indeed, a separate study involving a patient handout containing myths and facts about flu vaccination found that immediately after reading the brochure, patients were able to correctly distinguish the myths from the facts. Thirty minutes later, however, people who read the brochure were more likely to identify the myths as facts than were participants who never saw the pamphlet. The repetition of the myths seemed to have reinforced them, rather than replacing them with more accurate data.
I don't want to accidentally make people more likely to believe something by telling them over and over that it isn't true.
So, there is a lot of good writing out there, and I encourage you to seek it out if you have questions.
But we are moving on.
Dr. Catherine Lord was written a defense of the new DSM-5 criteria for autism diagnosis that is striking for her complete lack of interest in the feelings and opinions of autistic people.
She mentions the emotions of families and caregivers many times:
As a clinician who has seen families and people with ASD almost every day of my life for more than 30 years, and as a member of the Neurodevelopmental Disorders Work Group for the upcoming revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), it has been heartbreaking to hear how frightened families were by the proposed changes.
Families arrive at our center afraid that we will not listen to them or "see" their child as he or she is, yet at the same time hoping that we won't see or hear evidence of autism. One of the problems with the DSM-IV system was that families were often given PDD-NOS diagnoses because clinicians did not want to upset caregivers. Parents were relieved by the term PDD-NOS, which avoided the stigma of "autism," and consequently they sometimes did not pursue appropriate treatments, only to discover later that their child had had autism all along.
It is not surprising that parents might be frightened to learn that the name of their child's diagnosis will be changed.
The fear of losing services for children is also understandable because many parents have had to fight so hard to get this help. Health care and insurance systems often exclude autism from reasonable coverage, and families with a child or adult with ASD live in a complicated world of conflicting information about what treatments are effective.
Providing more accurate data about these changes may seem like a small gain, but I hope our study will help us take a larger step in improving diagnosis and decreasing the fears of families who already have to fight for what their children need, often across a lifetime.
But no mention-- nothing-- about the fears expressed by autistic people. This is in keeping with the fact that Dr. Lord and her colleague have been contentsimply not to study how the new criteria will affect adults. It is in keeping with the attitude of total indifference shown by committee members who met with GRASP.
The feelings of autistic people matter. How these criteria affect adults matter. We are too often portrayed as pets or objects who do not have a legitimate interest in what happens to us.
If Dr. Lord cannot grasp these things, she is in the wrong line of work.
And, no, her defense does not address any of the concerns Emily Willingham expressed here.
Dr. Grandin's brain was previously featured on 60 Minutes.
The first detailed look at the brain of Temple Grandin reveals "striking" differences from typical neural structure, according to graduate student Jason Cooperrider:
Grandin’s brain volume is significantly larger than that of three neurotypical controls matched on age, sex and handedness. Some children with autism have abnormally large brains, though researchers are still working out how head and brain size changes across development.
Grandin’s lateral ventricles, the chambers that hold cerebrospinal fluid, are skewed in size so that the left one is much larger than the right. “It’s quite striking,” Cooperrider says.
On both sides of her brain, Grandin has an abnormally large amygdala, a deep brain region that processes emotion. Her brain also shows differences in white matter, the bundles of nerve fibers that connect one region to another. The volume of white matter on the left side of her brain is higher than that in controls, the study found.
Using diffusion tensor imaging, the researchers traced white-matter connections in Grandin’s brain. They found what the researchers call “enhanced” connections — defined by several measures including the fractional anisotropy, or integrity, of the fibers — in the left precuneus, a region involved in episodic memory and visuospatial processing.
Grandin also has enhanced white matter in the left inferior fronto-occipital fasciculus, which connects the frontal and occipital lobes and might explain her keen visual abilities, the researchers say.
Grandin also has some “compromised,” or weak, connections, defined in part by decreased integrity of the fibers. She has a weak left inferior frontal gyrus, for example, which includes the famous Broca’s area for language. She also shows compromised connections in the right fusiform gyrus, a brain region involved in processing faces.