Dr. Peter Gerhardt spoke yesterday in Toronto about helping autistic people transition to adulthood, with a focus on sexuality:
“When I talk to professional groups, they say ‘How do we get parents to want to address this?’ When I talk to parent groups, they say ‘How do we get professionals to want to address this?’ Part of it is that we’re both so reluctant to really talk about it.”
In a world where sexual “rights” are routinely discussed, Gerhardt told the audience that people with autism have as much a right to safe, healthy sex lives as the general population. But sex can present particular challenges for people with ASD.
“Because our guys have trouble understanding social nuance, it’s easy to get in trouble.” Saying that sexual experiences should happen in “private” is vague: how private? And people with autism can be particularly vulnerable to predators if they fail to recognize the signs of trouble.
Today, Autism Speaks is sponsoring a conference for families and professionals called "Treating the Whole Person with Autism: Comprehensive Care for Children and Adolescents with ASD."
It featured my favorite neurotypical autism expert:
Peter Gerhardt, Ed.D., director of the McCarton Upper School and chair of the Scientific Council for the Organization for Autism Research, emphasized the need to continually think of the changing care needs across the lifespan. Dr. Gerhardt stressed the importance of making optimizing adult outcomes a much higher research priority. In particular, he noted the need to identify and focus on meaningful knowledge and skills vital for independence and fulfillment.
And then there was a lot of stuff about gut bugs and genetics.
Chief science officer Geraldine Dawson said:
"The theme of this conference, treating the whole person, reflects our ultimate goal of helping individuals with ASD to have healthy and successful lives."
But is that the ultimate goal of Autism Speaks? Or, as they are telling Walmart shoppers across America, is Autism Speaks "dedicated to finding a cure for Autism"?
It's nice that the Twin Mills Camping Resort is raising money for Autism Speaks. It would be even nicer if the version of Awareness that Autism Speaks espouses in 2012 included telling them that many autistic people feel hurt when NT people give events to raise money for us names like "Camp for a Cure."
Oh-- and Autism Speaks is advertising on thAutcast today! So they can pay for you to read why I think eugenics are a major part of their agenda.
Thanks, Autism Speaks!
Both this report on autistic adults and the video version of it are interesting to watch because of the different attitudes shown by the neurotypical experts who are interviewed. Of course, although we do see an autistic adult, nothing he nor any other actual autistic person has to say was included.
We do hear from Dr. Peter Gerhardt, one of the most compassionate NT experts:
"Right now we talk about what a horrible, challenging, significant developmental disability it is, but then I come along and I say yeah, but you can hire him," Gerhardt said, "If we give a little on one end in terms of accommodating our need for specialized services on the other end diminishes a little bit. So we can find a very positive accommodation I think by working on both ends of this spectrum so to speak."
But we also get a lot of Autism Speaks horror talk, both from the anchors and from the Cleveland Chapter founder:
"There's, what I call, a tsunami of children coming in down the pike," said Shari Goldberg. Her 15-year-old son Noah was diagnosed with autism at 18-months, "If one in eighty-eight children right now have autism then imagine how many adults and we have to help those adults and figure out how they're going to fit into our community because they are our community. They're our children, our brothers, our sisters."
It's been quite a birthday in Autismland for me. Today, for the first time, someone from Autism Speaks actually listened to me. I had a lengthy talk with Kathy Streng, who is the Southeast Regional Director of Something That Is Not Exactly Clear to Me. And she was very nice, and very interested in listening.
And that has never happened before.
So thank you, Kathy.
And thank you, Jennifer.
Also thanks to the Autism Science Foundation, who let through my question today to Dr. Peter Gerhardt, another thing that has never happened before:
Does it concern you that autistic people are usually left out of organizations that study us and claim to help us? Any ideas about what could be done to improve that situation?Peter Gerhardt: It does bother me and it should be a focus of advocacy on behalf of the ASD community. I think OAR can do more in that direction as well as any number of other organizations. I am glad, however, that Ari is now on the IACC as that is the source of much funding.
Jack Robison and Kirsten Lindsmith, the subjects of Amy Harmon's well-received New York Times story about love and Asperger's syndrome, appeared yesterday on National Public Radio's Talk of the Nation. It was really great to hear host Jack Donvan talking to autistic people about autism.
Lindsmith was especially interesting when Donvan asked her if she had worked to understand nonverbal cues:
LINDSMITH: Oh, I definitely do. I don't know about Jack, but I - the Internet is a wonderful tool. I've found myself Googling things like body-language dictionary. And I found a website that has a very comprehensive body-language dictionary, and I learned things like, for example, if someone is talking to you and squinting one eye, that means that they are talking down to you from a superior position, often giving orders.
And I realized that my old boss used to talk to me this way, and I had always assumed he had some sort of facial tic because he would squint one eye when talking. And now that I'm aware of it, I see it everywhere. Even on TV, actors will unintentionally do - will do it, or maybe intentionally, but that I - things like that I pick up on now that I've learned it.
DONVAN: But you needed to be - you didn't just absorb it, you needed to essentially read about it or be told about it, and then you can notice it?
LINDSMITH: Yeah, like I have a slightly easier job reading signals and facial expressions than maybe the more average autistic, but I know that, like, say different types of smiles, I can recognize a genuine smile from a non-genuine smile, or at least I think I can. But more subtle things like the direction that a palm is facing when someone is gesticulating apparently has a lot of meaning that that doesn't come naturally to me.
I wish all three of these people had been clearer about the fact that Asperger's syndrome IS a type of autism (Donvan said "it's sometimes described" as one, which is nonsense). And I hate it when high-functioning and lucky people with Aspergers want to deny, as Jack's father John Elder Robison sometimes does and both kids do here, that Aspergers is a real disability. No. Asperger's is mild but disabling autism, not "a type of person" or "a way of being."
Peter Gerhardt of the Scientific Council at the Organization for Autism Research joined the discussion to offer the perspective of an enlightened neurotypical expert and take calls:
When I talk to professionals about the issue of sexuality and relationships on the autism spectrum, they often say, well, parents don't want to deal with this, parents are afraid to deal with this. And then when I talk to parents about the issue, they say, well, professionals don't want to deal with it. So what ends up is nobody deals with it, and it becomes, sort of this, you know, elephant in the living room that nobody is really dealing with. So we end up with situations where, you know, for her son, you know, simple physical contact is seen almost as a precursor to a sexual assault, where, in effect, it may be just simple physical contact in most cases.
And - which I think sort of goes back to this, you know, I have a friend Donna, who's on the spectrum, has Asperger's syndrome. And we were discussing social events one time and she commented that, you know, if you neurotypicals have all the skills, why don't you adapt for a while, damn it? And I really started to think that, you know, we wouldn't, I guess - and she said, if I was a person who used a wheelchair, you wouldn't say, well, I'd love to hire you but you have to walk first. And we often do that to folks on the spectrum because we fail to address the issue of translating to the other side. What do neurotypicals know about people with autism? What can they do to better interact? How can they understand this person? I really think we're missing a big part of the equation when we don't do that.