Autism Women's Network
The Autism Women's Network (which I recommend highly) links to an article from Stone Hearth News that articulates much of what I believe about autism and girls. As my title indicates, I think that the reason boys are more 4 to 8 times more likely to be diagnosed with autism is that male autism tends to present in ways that are alarming to the people around them. And because autism was first discovered in boys, it's not surprising that tests that screen for autism would more accurately describe boys than girls:
In the new study, Swedish researchers showed that 18 new questions on a revised Autism Spectrum Screening Questionnaire lead to very different response profiles for school-age boys versus girls who have Asperger syndrome.
Research that includes girls with autism is rare, and research focusing on gender differences is even rarer.
“Many of these [testing instruments] are modeled on the earliest groups of children identified with autism, many of whom were boys,” says Somer Bishop, assistant professor of pediatrics at Cincinnati Children’s Hospital in Ohio, who co-chaired the gender differences session in San Diego.
Because the symptoms in girls are often different, “I think that very, very smart girls go undetected at higher rates than boys do,” Bishop says. “[Girls] often present with more subtle difficulties.”
Watch this video of Chase singing "I Love You," and playing with poker chips, which she is pretending are Huey, Dewie, and Louie.
The most adorable video of poker chips in someone's hand I've ever heard.
Her play is unusual, but not necessarily in ways that would show up on a screening test for autism, as Bishop and Marisela Huerta explain:
In focus groups, Huerta says, parents of girls often note that the questions don’t capture what is unusual or abnormal about their daughters’ play habits.
Unlike the stereotype of the boys with autism, girls with the disorder are often interested in imaginative play — obsessively so, in some cases. “You don’t expect to see a kid with autism being obsessed with a baby doll,” says Bishop.
Similarly, a girl with the disorder may be socially interested and motivated, but unsuccessful in forming relationships with her peers. “We get referrals from families who are frustrated because they know in their gut that something is not going well in terms of their child’s overall development, but can’t quite figure out why things are so hard for their girls,” Huerta says.
This is one of the reasons why Simon Baron-Cohen's pseudo-science ramblings about autism being the "extreme male brain" are so dangerous. They don't just encourage parenst and doctors to think chemical castration might be a good way to treat autism, although that would be bad enough. They also discourage people from looking for the girls and women with autism who aren't getting the treatment and support they need.
Baron-Cohen's presence on the board of the Autism Women's Network indicates that he is is aware of and concerned about these problems. But those concerns haven't stopped him from putting forth a whole new pop science view of evil, which is getting a lot of attention. He still doesn't get that making up theories and then cherry-picking mountains of data isn't science, and it's dangerous.
And nor do his supporters in the autism community.
Dr. Temple Grandin is appearing on the Autism Women's Network radio show this morning to talk with parents about helping their children reach their full potential. She also met recently with students from the Monarch School. The school posted video of their thirty minute discussion, which is available for you to watch here.
The most entertaining part is that Temple and the kids all love The Big Bang Theory and, like me, she thinks actor Jim Parsons in on the spectrum, but it's a wide-ranging discussion. The most useful part is her discussion of how she learned to regulate her emotions.
Alterna-Mom reports that the Autism Women's Network has gotten some great news in its campaign to host workshop for girls and women on the spectrum:
Rudy Simone at Psychology Today asks her readers to imagine a world where Aspergers is the norm.
Penelope Trunk explains how to get a workspace spouse.
You don't have to be a woman to love the Autism Women's Network. I would guess you don't have to be autistic, either. But I wouldn't know about that. Please vote for their Pepsi Refresh Project, which will fund workshops for women on the autism spectrum. And their Blog Talk Radio program is alwasy worth listening to. This week's episode features Borat's cousin, autism researcher Simon Baron-Cohen. It's very interesting for its discussion of women and autism.
On the latest episode of the Autism Women's Network's weekly show on Blog Talk Radio, host Sharon daVanport interviews author Kristi Sakai.
Sakai's award-winning book Finding Our Way: Practical Solutions for Creating a Supportive Home and Community for the Asperger Syndrome Family explains how to organize a home that is friendly for people with autism. She has three children and a husband, all of whom have Aspergers, and, in this interview, she discusses how much more difficult it was to get to her daughter diagnosed than her brothers. She and Sharon agree that girls with autism may be able to hide symptoms more readily than boys. Both also have teenage sons on the spectrum, and they discuss how difficult it can be for older kids to generalize their skills and hold things together.
Most of the discussion focuses on how Kristi's new book for parents, written with Joe Steiner, which deals with the extremely important topic of kids with Aspergers and sexuality. Called I Don't Want to Talk About It, the book will take a realistic attitude toward the sexuality of people of the spectrum and highlight the need for direct teaching around social customs related to sexuality. The book is scheduled to be released in the summer of 2011.
Autism Women's Network is currently broadcasting their show on Monday mornings. Next week's guest will be Borat's dad, autism researcher Simon Baron Cohen