Emily Bazelon has to be applauded for using both her own high profile and the TED brand to bring attention to the fact that there are autistic women and girls who are not named Temple Grandin, and that they have difficulties which can be distinct from those faced by autistic males. But I have serious concerns about the way she handles the topic.
She is right that we tend to be less forgiving of women who violate social norms. I also appreciate that much of the presentation focuses around telling the stories of real autistic girls. Caitlyn was 13 when Bazelon first wrote about her in 2007, and she emerges, both in that article and in this presentation, as a painfully recognizable example of what it can be like to be a young woman with Aspergers.
Bazelon states directly that, like Simon Baron-Cohen, she is interested in autism because she is interested in empathy, specifically for her the failure of empathy that leads to bullying. She identifies their own lack of empathy as the reason that autistic girls like Caitlyn find themselves socially excluded and depressed-- in fact, the assumption that autistic people simply lack empathy is one that she never seems to question at all.
And that's especially problematic when talking about autistic women and girls. Many autistic women believe that they do not have any deficit in empathy, but that differences in communication style look like a lack of empathy to neurotypical observers. It is my observation that autistic boys and men are more likely to say that we actually have problems empathizing with other people, and I think that might be, in part, because autism may tend to actually impair empathy less for girls. Or it could be that, as Bazelon notes, autistic girls tend to have better language skills than autistic boys. The stereotype of a numbers-obsessed geek is more accurate for boys with Aspergers than girls, but, like most stereotypes, it's more inaccurate than not for both genders. It would be nice to see acknowledgement of that.
Another question that inexcusably goes unasked is "What causes the disparity in autism diagnosis between the genders?" There is good evidence that girls are simply less likely to be diagnosed even when they show as many signs of autism as boys do. One of the biggest problems that autistic women and girls face is that they are undiagnosed, without services or any even the emotional support of being able to name their differences from their peers as something other than personal failings. And, frankly, addressing this diagnostic disparity would probably do more than anything else to convince people to stop ignoring female autistic experiences.
I think it's possible that autistic girls experience depression at even higher rates than autistic boys, but both here and in her 2007 article, Bazelon gives the impression that depression is rare in boys with Aspergers, and that's simply wrong. Depression is highly correlated with Aspergers for people of both genders. I know Bazelon knows this because she referenced this study connecting Aspergers and suicide when she was criticized by the producers of the film Bully for suggesting that they were irresponsible for not disclosing that Tyler Long, a subject of that film who killed himself, had Aspergers.
For me, the most annoying aspect of Bazelon's talk are the facile solutions she offers for the problems she describes. Her most concrete example is social skills camp. She says:
We can help women and girls with autism with our extra empathy.
And that sounds sort of nice, but also really condescending, and I have no idea what it means. In lieu of explaining or supporting the claim, she just plugs her book and talks about how bad the Internet is for empathy in general. Apparently her best hope for autistic girls to avoid being bullied is for their peers to stay off Facebook and develop the empathy they will need to intervene.
And I think that autistic women and girls are their own best hope. By telling our stories and supporting each other, autistic people are making our place in the world. And women are very often leading that movement.
According to some parents of autistic children, it is never legitimate for autistic people to say anything about autism. Because "real" autistic people are nonverbal. like their kids, so anyone who can speak does not understand what "real" autism is. It is not surprising that some people who fall into this group would feel the need to release the video above, which suggests that screaming, naked children should have been part of last week's congressional hearing on the federal response to autism.
But-- there is no demand that autistic people shut up. In fact, the maker of the video even claims to admire Ari Ne'eman of the Autistic Self Advocacy Network.
This is progress. When Ari was nominated by President Obama to the National Council on Disabilities, his confirmation was anonymously held up for months. Age of Autism tried to keep him from serving. A petition to try to keep him off the Council was signed by over 750 people, and is still getting new signatures.
Sure-- we still have comments, like this one on the video from John Best, that suggest that Ari Is Evil:
Ari Ne'eman is a degenerate liar. ? Nobody in their right mind admires anything at all about this sadistic pig. Every word out of this liar's mouth is designed to do one thing, obfuscate the truth about the true abject horror of what autism really is.
But-- even the people who think vaccines cause autism are getting used to the idea that autistic people are going to have something to say about our lives, whether they like it or not.
A year ago, "Autism Every Day" was the top video when you searched for autism on YouTube.
The Firth family has been found safe. Parents James and Mai had threatened to kill themselves and their children if daughter Kristen's autism did not improve or they stopped being able to afford treatment.
A memorial was held for Heidi and Arnold and James Krumm, whose son Christopher killed them after saying his father gave his Asperger's syndrome,
A San Francisco man has been charged with raping an autistic teenager:
Gary Steven Atkinson, 36, was arraigned Tuesday on charges of kidnapping, three counts of rape of an incompetent person, three counts of lewd acts upon a child, and one count of an attempted lewd act upon a child, CBS reports.
"This is by far one of the most sickening cases I've seen in my career -- to take advantage of someone of this stature," Oakland Police Chief Howard Jordan said at a news conference.
Last Saturday, the American Psychiatric Association approved many changes to the ways that autism amd other conditions will be diagnosed. Yesterday, radio station KQED hosted a discussion of how the new diagnostic manual may affect autistic people and our families. The guests were:
- Emily Willingham, freelance science writer and editor, parent of an autistic son who was diagnosed with Asperger's
- Michael John Carley, executive director, The Global and Regional Asperger Syndrome Partnership (GRASP)
- Sally Rogers, professor of psychiatry and behavioral sciences at UC Davis MIND Institute
- Steven Kapp, PhD student in developmental psychology at UCLA and a member of the Autistic Self Advocacy Network
The panel is intelligent and well-informed, with a broad rage of opinions about the DSM-5. Very highly recommended.
Police are searching for a family of four after the parents threatened to kill themselves and their children:
The Florida Department of Children and Families (DCF) was called to investigate threats James and Mai Firth allegedly made to kill their children and themselves in a “suicide pact” they had agreed to. The family resides in Vietnam and traveled to the United States to obtain treatment for their 4 year-old Autistic daughter Chieu “Kristin” Firth.
Law enforcement says that the “suicide pact” was the result of James and Mai Firth’s frustration that “Kristen’s” Autism is expensive to treat. James and Mai Firth stated they would kill the children and themselves if “the money ran out” or “Kristen” didn’t show improvement during treatment.