Noah Britton: "Ask me about my fear of strangers"
Noah Britton is most famous for co-founding the first comedy troupe composed entirely of people with Asperger's, Asperger's Are Us. He also performs music by himself and with the band The Best Thing Ever. In 2012 he was named as a public member of the federal government's Interagency Autism Coordination Committee. In his spare time, he is a psychology professor in Boston, MA.
I spoke with Noah by telephone two days after the Boston Marathon was bombed.
Landon: You’re in Boston, right? Are things going okay for you since the bombing?
Noah: Yeah, I had an incredible coincidence that happened that day. I got asked to go there by my girlfriend, and I said, “No, don’t want to watch a marathon.” And we fought about it and didn’t go anywhere and broke up. And in the midst of breaking up, we heard about this bombing that we would have been a part of had I not said no. And that was pretty amazing. I felt glad that we spent the day breaking up instead of getting killed. But I’m doing fine. Thanks for checking. How are you doing?
Landon: I’m doing fine. You know, I don’t like April very much. Autism Awareness is pretty exhausting.
Noah: I know what you mean. The one thing that’s been helpful for me is that Asperger’s Are Us always gets shows every April because of it.
Landon: Yes, it does build traffic and get people excited. But people who are excited about autism are kind of hard to deal with.
Noah: Yes, excited people in general aren’t rational and they won’t listen very well. I was just teaching about this.
An Algebraic Approach to Humor
Landon: Everyone in Asperger’s Are Us has Asperger’s syndrome. Do you find that it’s a very different experience to work with them?
Noah: Absolutely. I love it, and we get along really well, and we come up with similar stuff. The camp where I worked where these guys were campers was filled with similar senses of humor, and I would latch onto the ones who were most similar to mine. There really is something about how we can make the same jokes with each other all the time. We approach humor very algebraically: “Okay, reality is this, so what can we change about reality that’s funny?” As opposed to approaching it like a lot of typical comedians do, where it’s, “How can I make the audience empathize with me? How can I tell them something that they understand?” And that doesn’t interest me when I watch comedy.
"Neuroscience Fiction" by Gary Marcus for The New Yorker's blog succinctly expresses the sad truth about neuroscience: it is in its infancy, and claims that we are the the verge of understanding or treating complex neurological differences like autism have been inflated to the point of dishonesty:
The real problem with neuroscience today isn’t with the science—though plenty of methodological challenges still remain—it’s with the expectations. The brain is an incredibly complex ensemble, with billions of neurons coming into—and out of—play at any given moment. There will eventually be neuroscientific explanations for much of what we do; but those explanations will turn out to be incredibly complicated. For now, our ability to understand how all those parts relate is quite limited, sort of like trying to understand the political dynamics of Ohio from an airplane window above Cleveland.
It's not that significant research is not being done or that scientists are not making important discoveries. They are. But they are rarely honest with the general public about just how much there still is to learn before we are even going to able to able to make a legitimate hypothesis about a question like "how does autism work?"
I am depressed, both about what passes for "autism research" and about how that research is shared with the public in ways that reinforce stereotypes about autistic people.
Sometimes studies are presented to the general public as giving us information about autistic people, but no actual autistic people are used in the research. Instead, scientists take a group from the general population and give them some variety of the Autism Spectrum Quotient. Although there is a high correlation between a high score on the AQ and autism, there is no question that is based on stereotypes about autistic people popularized by its creator, Simon Baron-Cohen. It's based around the idea that people with autism are "extreme male brain" types, who like science and don't like talking to people. It identifies the sort of geeky person you see on The Big Bang Theory, who may or may not have autism. It does not identify real autistic people who don't match that stereotype.
So it's very dubious to begin by taking a random group of people and giving them the AQ, then expect those results to generalize to autistic people. Reseach about autistic behavior needs to include actual autistic subjects.
Catrin Finkenauer's study of autism and compulsive Internet use is shockingly stupid and twisted, and The Journal of Autism and Developmental Disorders should be embarassed to have published it. She gave a group of married couples the AQ, then asked them about their Internet use. She did not find that people who scored higher on the AQ used the Internet more often, but she did find that their usage tended to be more compulusive. The problem with that conclusion is that the questions used on the AQ indicate that people would prefer to avoid other people and fixate on subjects of interest-- the same things one would ask about to indicate compulsive behavior. So-- she found that people described their Internet usage in a way that matched the way they describe their behavior in general.
And this is what reporter Traci Pedersen claims that proves about actual autistic people:
Previously, Internet use had been considered positive for people with autistic tendencies as it allows them to communicate with others in a safe and structured environment without a lot of distractions.
Finkenauer warns, however, that it is important to monitor Internet use in individuals with many autistic traits to prevent damaging the contact they have with the off-line world. She believes that followup research is needed to study the exact nature of the relationship.
“For example, we would like to know if the relationship between compulsive Internet use and autistic characteristics is important for the type of activities that people undertake on the Internet,” said Finkenauer.
So-- actual autistic people may be prevented from using the Internet because parents or caretakers will see this overhyped article based on a terribly designed study that involved no actual autistic people.
So-- no, not all autism research helps autistic people.
And-- no, autism awareness for its own sake is not always a great thing.
Emily Willingham analyzes the latest "mouse study holds possible cure for autism" story:
In fact, experience makes me skeptical that we're much beyond the starting gate. The study in question appeared in the journal Science and used mice to link what the authors call "nonsyndromic autism" to the autism-related syndrome Fragile X (which sometimes includes symptoms of autism). The mice they used are bred to lack a protein, neuroligin-3, responsible for building functional synapses, the connective junctions where our neurons "talk" to each other. Perhaps not surprisingly, when the researchers had the mice without neuroligin-3 start making it, the mice improved in the "autistic-like" behaviors they exhibited. More on these results in a mo', but first, a little something about the way headlines like, "Animal study offers prospect of autism treatment" make their way to our eyeballs even if they can't live up to their promises.
It can start with the paper itself. Like many researchers working on questions related to the human condition, the authors, led by senior investigator Peter Schieffele at the University of Basel, Switzerland, couldn't help but put a little line at the end of the abstract, saying that the results highlight "the possibility for reverting neuronal circuit alterations in autism after completion of development." That's essentially science speak for, "Hey, look--maybe we could take this information and use it to develop an autism treatment." There's a long line of animal studies that hold out that clinical promise in the abstract, regardless of the condition--autism, neurodegenerative diseases, cancer, autoimmune disease. Anyone who follows these things can tell you that the "fruition" part of these promises is a rare fruit, indeed.
Oxytocin has been hyped as a love drug, the miracle molecule that makes us moral, and a possible cure for autism. Ed Yong gives two reasons why we need to be cautious and slow down:
1) Despite claims by pop scientists, oxytocin does not have reliably desirable effects:
Some scientists have found that oxytocin boosts envy and schadenfreude, as well as favoritism toward one’s own clique. In one experiment, volunteers who played a game with people they knew were more cooperative after a noseful of oxytocin, while those who played with anonymous strangers became less cooperative.
Jennifer Bartz, from the Mount Sinai School of Medicine, has found several responses that depend on a person’s mindset. She showed that socially secure people remember their mothers in a more positive light after inhaling oxytocin, while anxious ones remember mum as less caring and more distant. Along similar lines, she showed that oxytocin hinders trust and cooperation among people with borderline personality disorder.
2) It is possible that oxytocin might have legitimate therapeutic purposes, but parents should not start experimenting with it on their own children:
Why does any of this matter? Because the hype around oxytocin hurts and exploits vulnerable people. The hormone’s reputed ability to fix social ills has drawn the attention of parents whose children have autism, depression, or other conditions characterised by social problems. Many groups are looking to use oxytocin to ease those conditions, but always with great caution. Heinrichs, for example, is running a trial to see if oxytocin can help people with borderline personality disorder, when used alongside normal therapy. “If you sit at home with a social phobia and a prescribed nasal spray, the only effect you’d get would be a dripping nose,” he told me last year when I spoke to him for a New Scientist story.
But some people aren’t going to wait. Many of the scientists I have spoken to have been approached by parents who had bought oxytocin from the Internet and were using it to treat their relatives. “That’s very worrying,” says Carter. “There hasn’t been a single published study on the use of oxytocin in young children, and we have no knowledge of the long-term consequences.”