On last night night's episode of ABC's "What Would You Do?" patrons in a restaurant consistently stood up for actors playing an autistic 14-year-old and his family. Not a single one was critical of them the entire time the producers were filming.
People noticed, but were tolerant of the boy speaking loudly and pacing around the restaurant. When another actor playing an irritated customer made a scene, they objected to him. When the family rose to leave in response to his rudeness to them, two women comforted the mother and insisted they stay. And when he rose to leave, the restaurant erupted into applause.
After producers revealed themselves, one crying woman said, "My heart went out to the kid." And, yes, my favorite was the sweet, sexy cop who said,
If we had children, and one of them was like that, never in a million years would I want anybody to do what he did. . . You can't put anybody in a bubble and just leave them there.
I could only watch the whole segment online by going to the entire episode player and sitting through a lot of commercials. It's the third part.
I had mixed feelings when they played Michael Savage's ignorant rant to prove that people do indeed blame autistic kids and their families for behavior that is part of the disorder. It's a good example of hate, but why give him the free publicity? And I was scared that they were going to interview him on the show (they didn't).
I liked that they started with Andrew Goring's point of view, rather than that of his mother Lisa, who is Vice President of Family Services at Autism Speaks, although I didn't not enjoy the slightly ominous way the narrator intoned, "He has autism." I want to admit that this may be my bias against that organization showing itself, but it seemed to me that Lisa wanted to keep the focus more on parents, in the way Autism Speaks traditionally has in the past, and how bad it feels for them when people are mean to them because their kids are behaving oddly. In her example, she talks about the pain being called bad parents and (as edited at least) does not really address the pain of not being wanted somewhere because of your disability.
I was not too impressed with the performance of the actor, but I guess he was okay-- it did seem more like they had him look at a list of "symptoms" of autism rather than talking and observing autistic kids. I think if Lisa Goring was really responsible for "keeping it real," she could have done a better job there, too. Apparently, one of the "autism experts" he consulted with was OWL's Easter cartoon ("Eggs! Eggs! Eggs!")- or maybe somebody was thinking about Pink Flamingos?
And, one of the reasons I liked the stuttering segment I linked to yesterday more is that they used an actress who stutters. Not that they had to find an autistic actor, but they could have, and it sure would have been cool.
I think it's important to acknowledge that without the work of Autism Speaks and all the "Autism Awareness" stuff that I find sort of obnoxious, I don't think patrons would have have had the knowledge to show this level of compassion, but I think their ability to rise to the occasion also provides evidence that maybe it's time to be "All Done Autism Awareness."
It did a lot of good.
Now it's time for more.
Donald Trump has a theory about autism and vaccines. And FOX News celebrated Autism Awareness Day by letting him spew it all over TV.
The Raw Story offers a partial transcription:
“I’ve gotten to be pretty familiar with the subject,” Trump said. “You know, I have a theory — and it’s a theory that some people believe in — and that’s the vaccinations. We never had anything like this. This is now an epidemic. It’s way, way up over the past 10 years. It’s way up over the past two years. And, you know, when you take a little baby that weighs like 12 pounds into a doctor’s office and they pump them with many, many simultaneous vaccinations — I’m all for vaccinations, but I think when you add all of these vaccinations together and then two months later the baby is so different then lots of different things have happened. I really — I’ve known cases.”
Gretchen Carlson did try to talk him down and offer some fact-like material, so good for her.
Trump's sources for all of this garbage? According to him, Autism Speaks founders Bob and Suzanne Wright. As Orac at Respectful Insolence says:
Let's just put it this way. The Wrights have drunk deeply of the antivaccine Kool-Aid, so much so that the continued embrace of antivaccine nonsense by Autism Speaks in the face of overwhelming evidence that vaccines are not linked with autism is a large part of the reason why Alison Singer left that group. Trump's even done fundraisers for them.
Given the piece I published earlier today about Risperidone, I have a hard time getting excited about a new intitiative between Autism Speaks and a group of pharmaceutical companies to create new drugs:
The $38.7 million effort is being spearheaded by Autism Speaks, King’s College London and Swiss pharmaceutical giant Roche. Other drugmakers on board include Eli Lilly, Servier, Janssen Pharmaceutica, Pfizer and Vifor Pharma.
Over five years, organizers of the Europe-based initiative say they hope to make major strides toward developing drugs specifically to treat autism.
One of my major concerns about Risperidone is that fact that Peter Bell, a former marketing executive for Johnson and Johnson, the company that developed the drug, is one of the most important executives at Autism Speaks. It similarly worries me that Robert Ring, who announced this project, "served as head of Pfizer’s autism research unit before joining Autism Speaks last year."
Video version of this post
How outraged should we be by the use of Risperidone to treat autism?
What is Risperidone?
Risperidone is an atypical antipsychotic medication developed by Jannsen-Clegg (a subsidiary of Johnson and Johnson) and released in 1994. It was first approved as a treatment for schizophrenia.
"It is tempting, if the only tool you have is a hammer, to treat everything as if it were a nail." Abraham Maslow (Click here to see larger.)
The last time I really wrote about Autism Speaks, it was to acknowledge that "Autism Every Day" had been made private on YouTube, and that the way I write about the organization needs to change since their most negative messages about autistic people are, at least for the moment, largely a thing of the past.
Autism Speaks has greatly improved in other ways, as well. Their last round of funding included four grants to study adolescents and adults with autism, the best evidence yet that John Elder Robison, the only autistic person to ever play a significant role in the organization's decision making, is, in fact, having some influence on where money is going. They continue to include the voices and perspectives of autistic people more frequently in their promotional materials as well.
But that does not mean that I think Autism Speaks is a good idea or a helpful force in the lives of autistic people. I still think you should give your money and time elsewhere, and that you should try to avoid the media they produce.
And, again, this is not because Autism Speaks is run by bad people. It is run by people who mean well, but have a few very wrong ideas, and those ideas do make everything that they do a little dangerous. I want to go through these ideas and explain to you why I think they are wrong, and how they hurt Autism Speaks.
1. Autism is a disease.
It isn't. It's a neurological difference. It is entirely possible, even likely, that there are diseases that result in symptoms similar to autism, but autism itself is a difference in how the brain grows and makes connections. It's not a sickness. You don't need medicine for it, although you may need medication to help negotiate the difference between the internal world that your unique brain has created and the external world of neurotypical expectations and harsh sensations.
But Autism Speaks is far too quick to suggest medication, I think because it is the only tool doctors like Geraldine Dawson, their chief science officer, really feel comfortable using. Note how readily she suggests it in a January 5 chat session held on Facebook:
Desi: I am a concerned sister my brother has been displaying very defiant attitude about going to school and doing his routinely schedule. He also has this tendency to lash out and talk to his hands naming them Oobi and Uma… He does very forcefully and it happens about 53 times an hour. His school brought this attention to us this summer 2011. His teachers have noticed he is doing this more and more which deters and delays the time to complete a task. Would you happen to know what this is?
Hi Desi, This is Dr. Dawson. The behaviors you are describing are common in children with autism. Your brother is having trouble knowing how to express his feelings in an appropriate manner. When he gets frustrated, he likely doesn’t know how to express his frustration using words, and therefore he lashes out. Repetitive behaviors are also common. Both the lashing out and repetitive behaviors can helped through behavioral interventions and sometimes with medicine. To find resources, take a look at Autism Speaks resources library.
At least she says "sometimes," but it is just not ethical to tell someone's sister that maybe he should be on medication because he likes to play with his hands.
In particular, Autism Speaks has been inappropriately enthusiastic about the use of risperidone to treat behaviors associate with autism-- Dr. Joe Horrigan suggested that a parent consider putting her child on it in the same chat. And here's the thing-- the drug works fairly well on treating repetitive behaviors, but those are rarely problematic enough to merit its horrific side effects (breast growth in adolescent boys, neurological tremors that never stop, even if you stop taking the drug). It is most frequently prescribed because of aggressive behavior, but is is less effective for that than placebos are.
But Peter Bell, who is probably the most influential single person in Autism Speaks today, was a marketing executive at Johnson and Johnson, the company which created risperidone and marketed in under the name Risperdal. I don't think Bell is unethically promoting a drug that he knows to be ineffective, but I do think he believes the half-truths about it he was once hired to sell. Drugs are the only tool he knows.