National Public Radio
NPR reports on Henry Frost's campaign to attend his neighborhood school:
Frost has autism and a list of related physical problems which have so far eluded a tidy diagnosis. He communicates using an iPad app that speaks what he types.
The right Frost is seeking is the ability to attend Wilson Middle School in his South Tampa neighborhood. The Hillsborough County school district has told Frost they believe he is better off at a specialized program at Coleman Middle School, his family says.
Frost’s photo – and his cause – has gone viral since the photo was posted at the end of August. Thousands have given it an electronic thumbs-up on his I Stand WITH Henry Facebook page. And more than 2,100 have signed an online petition asking Hillsborough schools to let Frost attend Wilson Middle.
Henry was inspired by seeing the movie Wretches and Jabberers:
The movie follows autism activists Larry Bissonnette and Tracy Thresher as they travel the globe talking to reporters and others about autism. Often, they answer reporter questions by typing answers into a device which speaks the words.
It was the first time Frost had seen people with autism describing life with the disorder in their own words.
Something clicked in Henry, his family said.
“It knocked him off his path,” Russ Hunt said of the movie’s effect on Frost wanting to switch schools. “From that point on that was how it built.”
Bissonnette and Thresher visited Tampa and met with Henry soon after.
Although imperfect, this NPR story on the progress researchers have made toward understanding the autistic brain is state of the art reporting. It includes the voice of an autistic person and is based on years of proven research, not the latest fad.
Jeff Hudale has been working with researchers since the 1980s, when he was first diagnosed with autism at the age of 13:
"When I first started learning what this is really about I thought — if I can get some benefit to help my health out that would be great," he says. "But now I realized this not only helps me, but it can help other people with similar troubles, and I'm all for it."
So Hudale said yes to just about every scientist who asked him to participate in an autism study.
What researchers are learning, and what most informs my personal understanding, is that autism is a difference in how brains make connections. This science began when it became possible for people like Marcel Just to observe which parts of the brain were active when it performed different sorts of activities.
Just says scans of people without autism have showed him that in a typical brain, the activity in areas near the front is synchronized with the activity in certain areas toward the back.
"It was obvious that they were working together," says Just. "I mean we all knew in some vague way that the different parts of the brain would work together, but to find this sort of beautiful rhythmic dance together was a very eye opening moment."
When he began to study the brains of people with autism, Just realized that beautiful rhythm wasn't always there.
"There was this lack of synchrony between the frontal areas and posterior areas," he says.
You also see there a problem with the reporting-- a seemingly unquestioned assumption that the neurotypical brain makes beautiful music and that mine does not. The most beautiful thing in my world is the music of my brain. The connections in my brain are different from those of most people, but it is rude, and not completely accurate, to call them, as reporter Jon Hamilton does "just not good enough":
Just and his colleagues soon came to believe that the problem could be traced to fiber tracts that connect key areas in the front of the brain to key areas in the back. The connections just weren't good enough.
Just says it helps to think of the brain as being a bit like the Internet.
"The Internet would be nothing without cabling and wi-fi," he says. "It's the fact that we have this fabulous connectivity that lets our smartphones and computers connect to each other and get information back and forth quickly."
Hudale has a more succinct version of what's become known as the "underconnectivity theory of autism."
"Well, I'll put this to you simply, like, if I'm messed up it's because my wires are messed up," he says.
Neutral reporting avoids presuming that neurotypicality is superior.
The larger problem is with the research itself, which really has taken the MRIs and PET scans of people like Jeff much more seriously than what we have to say about how our brains work. This story is based on a study of recognizing faces, which made me think about Temple Grandin's recent comments at IMFAR:
Temple Grandin, in receipt of her Advocate Award yesterday stated “Researchers, you must do more work in sensory processing and visual thinking in order to improve our quality of life.” She noted that there are already hundreds of papers on Face Recognition.
Qualms aside, this is the sort of research I have found personally useful in my understanding of what autism is-- a difference in how our brains make connections. And the way to change connections is through education:
If connections really are the problem, there are tantalizing hints of a partial solution. A study of dyslexia has shown that when people do mental exercises that use certain fiber tracts, the connections get stronger.
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.