Oswald D. Heck Developmental Center
"What they really told him was that the very core of who he was was broken." Kirk Murphy's sister
What if autism is an identity as well as a disability? What if, when you try to "recover" a child from autism, you are doing the same sort of violence done to Kirk Murphy in the experiment described above?
In case you missed what I wrote about the first part of this series, the dead researcher mentioned in the clip above is O. Ivar Lovaas. Lovaas is the guy who adapted Applied Behavior Analysis for use with children who have autism.
In River Town, Peter Hessler's wonderful book about the cultural conflicts he endured while teaching English in China, he talks about the tendency people have to cling to often repeated statements in ways that make little sense. Deng Xiaopeng, one of the leaders who followed Mao Zedong, tried to allow people to continue to revere Mao while recognizing the excesses and violence of the Cultural Revolution: he said Mao was 70% correct and 30% wrong.
These were numbers that everybody seemed to know, and they had an almost talismanic ability to simplify the past. During conversations, I sometimes nonchalantly mentioned that Mao had been 67 percent correct, just to see what sort of reaction I would get. Invariably the listener corrected me immediately. It made the Cultural Revolution seem incredibly distant, a question of statistics: the lifetime batting average of Mao Zedong. (pages 171-172)
"Mao was 70% correct."
"Applied Behavior Analysis (ABA), the gold standard for autism treatment."-- Press release today from Rethink Autism
Warren and his colleagues concluded that intensive behavioral therapy or behavioral treatment started in very young kids has helped some of them improve reasoning and language skills, as well as their ability to interact with others. It’s hard to know which kids will benefit from those therapies, however.
“Some (behavioral) interventions can show some pretty dramatic changes,” Warren said. “At the same time, understanding which specific treatments are going to be best for specific (kids) – we’re not quite there.”
Warren's research indicated that ABA could indeed be effective-- but necessarily more effective than the Denver Early Start Model, and not with all children.
But ABA is "the gold standard," so his findings are being pretty much ignored. So are the findings published in the same issue of Pediatrics that most medication for autism does children no good.
Because medication is science and science is good and no one should ever question a scientist.
And Mao was 70% correct.
The rationale was positive, to help children, help the parents, who come to us in their distress, asking questions, "What can we do to help our child be better adjusted?"-- George Rekers
Lovaas was co-author of this paper. He signed off on a system that worked like this: Kirk Murphy got blue poker chips when he acted "masculine," and red poker chips when he acted "feminine." On Friday nights, his father would beat him, based on how many red poker chips he had.
It really is not okay that Ivar Lovaas thought that was a good thing to do.
It really should concern you that ABA as it is applied to autism came out of the same brain that helped come up with that.
But it probably won't.
Because ABA is the gold standard for autism treatment.
And Mao was 70% correct.
I had a very nice lady try to explain away Lovaas' participation in this experiment in the comments to my response to the first part of the series. She kept claiming that the only purpose of the experiment was to eliminate feminine behavior, and that Rekers was somehow perverting Lovaas' work by using it to justify treating gay people. She even referred to Rekers as "some disgusting person" perverting the original work. Except the Rekers was Lovaas' co-author. He certainly knew what the experiment was intended to do. Lovaas certainly was aware of Rekers' publications and never made any effort to distance himself from them. He must have known that Rekers' organization, NARTH, used his name to legitimize itself. He never chose to disassociate himself from treatment to stop people from being gay.
And like somehow it would have been okay to do this experiment (tell a father to beat his son for acting too much like a girl) if it wasn't linked to trying to change sexual orientation.
She insisted that abusive treatments like this were all in the past. When I pointed out that people were still being tortured at the Judge Rosenberg Center, she wrote this:
In regard to the Judge Rosenberg Center, they do use "aversives" (positive punishment), but only as a LAST RESORT, and with extreme behaviors of aggression and self-injury. These are individuals that could lose their eye-sight or even their lives if punishment based procedures aren't introduced to decrease these life-thereating behaviors.
It breaks my heart that you think punishment is only used as a "last resort" at JRC, when you must know that it was possible for a prankster to have two blameless teenagers shocked over a hundred times in one night by merely calling and giving the order. That's not "last resort"-- it's "daily practice."
She just knew I was wrong-- without having any remotely current or accurate knowledge, she just knew I could not possibly have any idea what I was talking about.
Maybe if she knew I had an MS in education, she would have considered the possibility that I might have some clue. But that would have taken almost as much work as googling "Judge Rosenberg Center" and reading down five whole results before defending it-- why on earth would anyone bother to go to that much work regarding some autistic guy with a blog?
That's when it hit me that what I was seeing was clericalism.
Clericalism is unreasonable deference to a priestly class. It's been in my mind a lot lately because the United States Conference of Catholic Bishops is meeting this week, and they'll be discussing their sex abuse guidelines.
But the conversation will be meaningless because they won't address the issue of clericalism, and that's always been the real problem.
When a Philadelphia grand jury indicted four priests and said that 37 other credibly accused priests were active in its ministry, the head of the archdiocese sexual abuse review board was as shocked as anyone else. She wrote an article in which she explained what went wrong in Philadelphia:
In a word, clericalism. In his book Clericalism: The Death of the Priesthood, George B. Wilson, SJ, articulates “unexamined attitudes” typical of clerical cultures: “Because I belong to the clergy I am automatically credible. I don’t have to earn my credibility by my performance.” And: “Protecting our image is more important than confronting the situation.” And: “We don’t have to be accountable to the laity. We are their shepherds.” Over the past few months, that’s how some Philadelphia Catholics and review-board members have perceived the attitude of Philadelphia’s bishops. When will bishops exemplify the teaching of Lumen gentium that laity and clergy are equally responsible for building God’s kingdom on earth? What will it take for bishops to accept that their attitude of superiority and privilege only harms their image and the church’s?
It is crucial that we begin to move past scientific clericalism in our understanding of autism.
We can't worship pseudo-science, just because it's the best science we've got. It doesn't really matter if some ABA shill tries to get people to ignore me. But it does matter a lot when people who try to speak up about abuse that they have witnessed are ignored.
And they are.
The science that says ABA is the best and only method for treating kids with autism is terrible science. That doesn't mean ABA itself is terrible. ABA can be good or bad, depending on the practitioner, sort of like any other reasonable method of instruction. People should be aware of its overly coercive roots and open to other methods if they seem more promising for their child. That's the extent of my bias against ABA.
But it's not the gold standard.
And Mao was wrong at least 67% of the time.
Panarama's troubling documentary on abuse in the Winterbourne View faciity.
Last week, the BBC program Panorama broadcast an episode that documented horriffic abuse going on at Winterbourne View, a facility that cares for people with autism and other disabilities. Yesterday, the New York Times told a disturbingly similar story about the Oswald D. Heck Developmental Center, where a 13-year-old boy with autism named Jonathan Carey was crushed to death by one of the men hired to care for him:
Yet on a February afternoon in 2007, Jonathan, a skinny, autistic 13-year-old, was asphyxiated, slowly crushed to death in the back seat of a van by a state employee who had worked nearly 200 hours without a day off over 15 days. The employee, a ninth-grade dropout with a criminal conviction for selling marijuana, had been on duty during at least one previous episode of alleged abuse involving Jonathan.
“I could be a good king or a bad king,” he told the dying boy beneath him, according to court documents.
In each case, the most shocking element is that the people who tried to alert authorities, both inside and outside the institution, were ignored. Mary Maioriello recorded a conversation in which she could not get Kate Bishop, who supervised homes across New York to acknowledge that hitting patients with a stick constituted assault:
“Well,” Ms. Bishop said, “in the original report that you made, it didn’t appear to rise to the level of ...”
“Hitting someone with a stick?” Ms. Maioriello asked.
“In the initial manner described ...” Ms. Bishop responded.
“Really?” Ms. Maioriello said. “So what’s the severity that you have to make an assault?”
When disciplined for being one of several staff members under Ms. Bishop's supervision who attacked a patient, one employee posted this on Facebook:
“im on administration vacation as well,” adding, “cheers brother here’s to beating retards.”