Most readers know my husband works at KQED. It's a big org, he doesn't know everyone -- and he specifically doesn't know the reporter below. But she works with a friend of his, and when she said she was working on an autism report, that friend made the connection happen. (As Seymour is technically a coworker, he was not interviewed for this post):
KQED's The California Report, Interview by Lisa Aliferis: Parenting an Autistic Child
[Rosa] criticizes the media for conditioning people “to fear autism as the worst possible thing that can happen to us.” Instead, she encourages parents of autistic children to work on understanding them, and helping them to develop as fully as possible. “I see my son as a happy child who needs support in a lot of day to day activities. He needs one to one supervision, but, within that, I want people to try to accept him on his own terms,” she says. “Pity is of no use for us. What does pity do for us? Nothing. … Pity closes off opportunities. Patronizing closes off opportunities."----
Seth Mnookin hosted a rather amazing autism discussion, both on his own PLoS blog and on Huff Po Science. He "asked some of the people who've influenced my thinking about all of these issues to collaborate on a virtual roundtable." The other participants were Todd Drezner, Ari Ne'eman, John Elder Robison, and Steve Silberman. I was a bit gobsmacked* to be included. The roundtable took place across two posts:
The Panic Virus on PLoS Blogs: Autism roundtable, Part I: Angry parents, disability rights, and living in a neurotypical world
We created TPGA because we want to reach people newly affected by autism — family members, people with new autism diagnoses, people who are wondering if they themselves might have autism — before the media takes them down the pity, horror, and misinformation rabbit hole. This is in parallel to the discussion Seth and I recently had on TPGA, in which he pointed out that if more parents felt comfortable having conversations with their pediatricians, if they felt like they could get all their vaccine (and other) questions answered, then they might not go bounding off into the Internet.Huffington Post Science: Autism Roundtable: Cross-Disability Solidarity, Goals for the Future, and What it Means to "Fit in"
Mostly, I'd like to see a real-world infrastructure that combines the strengths of TPGA with ASAN and similar organizations, that brings Autistics and/or everyone who plays a major role in their lives together to provide instant community and facilitate best practices autism learning. Then, ideally, we could devote more energy and resources to beneficial policy and science. I wonder how much more we could achieve, how many more people would get the support they need, if everyone was able to hit the ground running after an autism diagnosis.----
Quoted on the very best SciFi site in the universe, io9, talking about autism and Star Trek: TNG? Doesn't get much better than this for me! Especially as I adore Charlie, Carol, and Steve (whom I didn't even know was included until publication).
io9, interviewed alongside Carol Greenburg and Steve Silberman, by Charlie Jane Anders: Why Do We Want Autistic Kids to Have Superpowers?
So why do we want autistic people to have superpowers? I talked to Rosa, and she says that there are two conflicting things at work. We want autistic people to want to be like us, like Data from Star Trek: The Next Generation. And secondly, we're "obsessed with exceptionalism," says Rosa. "People can't handle the fact that some people are just different without having something fabulously acceptable as balance, because otherwise we'd just have to accept autistic people on their own terms, and that's hard and challenging and takes patience and work."----
*I use gobsmacked often because I truly do get gobsmacked often.