Saturday, January 15, 2011

Guest Post - Roy Sanders is Magic (and other discoveries at the CHoA Autism Conference)

Yet another guest post from our good friend Walt Guthrie on the "social sciences." Enjoy!


I wasn't expecting much from this year's CHoA Autism Confernce that was held last Saturday.
Boy, was I surprised.
Who knew that Roy Sanders had magical powers?

But I'll get to that.
Let's take the events of the conference in chronological order.

First up was Catherine Rice, a behaviorist from the CDC, who was there to give us the obligatory What-Is-Autism? opening presentation.
The talk actually touched more on issues of classification than anything else I have seen so far in these types of events. In the course of her presentation, she inadvertently raised a couple of interesting points. First, until 1980, the DSM classified autism as a type of schizophrenia.
Now here's a question (one that I didn't actually ask): In 1979, WAS autism actually a type of schizophrenia and in 1981 it WASN'T schizophrenia? The implication from Rice, of course, was that this is an example of how far the understanding of autism has come. But, as my numerous public questions to "experts" make clear, the classification of autism, even today, is divorced completely from empirical evidence. James McPartland, in my questioning of him, admitted that the use of the word "disorder" in the classification of ASDs was purely definitional.
If autism, or any word, is only whatever a designated authority structure says it is, then that's what it is. If autism is defined as schizophrenia, then it's schizophrenia. And if it's defined as a disorder, then it's a disorder. And if it's defined as two parts from this column of symptoms and three parts from that column, then that is what you have.
If you believe that the evidence points to the moon being made of cheese, then upon arriving on it, you may be forced to admit that no, the moon is not made of cheese. If you DEFINE the Moon as being made of cheese, then upon discovering that the orb revolving around our planet is actually composed of a different substance, you may be forced to admit that it is not, in actuality, the Moon.
If autism,as defined, is different from autism as experienced, then it's pragmatic utility as a useful term, even for the "science" of behaviorism, is questionable indeed.
Which was brought more into focus by Rice's second tidbit. She declared that there are those with autistic traits who are not counted as having an Autistic Spectrum Disorder. She compared it as the difference between neuroses and psychoses but then didn't really touch on it again.Yet, given how much of her presentation was related to doing counts of "ASD" cases in the general populace and whether or not the rate of autism is rising, this would seem to be highly pertinent Let's follow this line of reasoning. All autism is a disorder (thus ASD). Some people have autistic traits but, they are not disordered. So now, at least according to Rices' brief explanation, we find out that, a little bit of autism equals no autism at all.
Now, why not the easier explanation of: some people have autism and they're fine with it? Is it because that interpretation would be injurious to the autistic population? Or would the real victim of such an interpretation be the behaviorist money train for whom every diagnosis is a ka-ching?
I asked Rice, what the methodological procedure was for labeling the entire autistic spectrum as disordered (taking into account that she doesn't consider autistic-lites as part of the spectrum). It was at this point that Roy Sanders, the Medical Director of Marcus popped in to shut me off.

Next up was Felissa Goldsmith, a child psychiatrist from Marcus
Dr. Goldsmith treats a PowerPoint presentation like a teleprompter. And that's not a compliment.
There was little new here. However, there was such an underlying contempt for autistic kids in her talk that I had to check with Linda later to confirm that it wasn't just me picking up that vibe.
To give just the most egregious example: Goldsmith suggested more than once that parents should be encouraged to mourn their children's autism like a death. And to do this on special occasions like birthdays and Christmas. This easily was the most sickening thing I've been exposed to all week. ("Daddy will be down in a moment, Timmy. He's mourning the child he wanted that you'll never be.") This is the advice you'd expect to come from a monster and I said as much.
I asked Sanders, if this was the official policy of the Marcus Center. Boos from the audience. He curtly dismissed the question as inappropriate.
Well, it's not like I was the one who brought it up.

Dr. Michael Morrier, from the Emory Autism Center, gave a somewhat uneven presentation on ABA that ended up focusing on how his people do it over there. I want to say some good things somewhere and it might as well be here. As I told Morrier after the presentation, he is the least offensive behaviorist I have ever encountered. When asked about his center's use of aversives, he replied that they don't use any.
Giving Morrier the benefit of the doubt, if I was forced to send a child anywhere for the application of ABA, Morrier would probably be my choice.
Still, even if he seemed more of an actual human being than any other behaviorist that I have ever personally met, he still was, after all, a behaviorist. At one point, talking about instilling eye contact as a habit in children, he observed that one could be TOO successful. If children make eye contact all the time they become creepy staring machines. And Morrier noted that regular run-of-the-mill kids don't make eye contact all the time either. Instead, they do it 63%
of the time. (Or something like that number, I neglected to make a note of his actual percentages and all the figures that follow in this paragraph are approximations of his actual numbers.) Morrier was quite explicit that the goal was to get the autistic kids to make eye contact at EXACTLY the same percentage of the time as normal kids. He even talked about making up the gap (as if this were some sort of missile crisis from the 1960s) between the two groups so that children who begin training at age three are 14 percentage points behind in eye contact percentages and those that begin at age 4 are 28% behind.
Morrier never felt the need to explain why a random sampling of non-autistic kid's eye contact percentages (or any other behavior) should serve as the golden mean against which all similar autistic behavior should be measured. There was no suggestion that it might be possible that regular kids might be indulging in too much eye contact and perhaps should receive some therapy to tone it down a bit.
There was no evidence presented that, having trained children to achieve the same percentage of eye contact to non-eye contact, that these children were indeed receiving the same benefits from this activity. Presumably, eye contact is a skill that delivers information to those engaging in it and that the everyday children doing it were themselves benefiting from the activity.
Certainly a question that you might think should be asked is: do autistic children, trained to make eye contact, receive the same benefits as regular children naturally engaged in the same activity? Or are they merely being trained to pretend that they are not autistic? A previous speaker at the AAC made a big deal about how his research has shown that those on the spectrum tend to gain their information about people from studying mouths rather than eyes. Assuming that this is indeed the case, and that all these babies haven't had laser pointers slapped on their heads for nothing, then wouldn't you want to know if forcing a child to shift his primary attention from mouth to eyes will be accompanied by an increasing ability to make use of this information? Or, will the child be left in a worse position, forced to concentrate on areas of the face he is less equipped to easily decipher?

Finally it was Sanders turn.
During his presentation, Sanders literally sat on his hands and continuously kicked out his legs and pointed his feet which might have been adorable if he was a shy, pretty girl in a sundress instead a self-conscious middle-aged introvert seemingly hyper-aware of his own poor public speaking skills.
Sanders attempted to use his own personal situation to illuminate what parents in the audience would face and the things they should do to prepare for raising a child on the autistic spectrum. And, as might be expected, it was the same old, tired checklist, although this time it was wrapped in a droning awkward wallow of self-pity and look-at-me-I'm-a-martyr-for-raising-an-autistic-child self aggrandizement.
At the conclusion of his talk, I asked the question why, in the two years of this particular conference, which seems to be aimed squarely at the parents of autistic children, that they had not chosen to include a single adult or teenager who was actually on the spectrum. Someone who might be able to explain to the parents what their own children were actually experiencing.
Sanders was dismissive of this question as well.
I then asked why, with all the usual suspects that he was recommending parents consult, he had not included actual people on the autistic spectrum who could possibly contribute a valuable understanding as to why their children thought and acted as they did.
His response was that not all people who claim to be on the spectrum actually are.
Well, THAT'S awfully cryptic, Roy.
His meaning became clear soon enough, right after the meeting. And it was at this point that I discovered that Roy Sanders' has magical powers. For he revealed to me, much to my surprise, that I am not on the autistic spectrum.
Wait a minute, I hear some of you saying. Don't you have to take a bunch of intricate expensive tests and pay a bunch of money to get an autistic diagnosis? Well, yeah. That's what I thought. A major part of this whole four hour plus drone-a-thon I had just finished sitting through was about the importance of getting special testing. Nobody said anything about just dropping Roy Sanders into the room and having him magically deduce it.
But his magic didn't end there. He had an even more dazzling trick up his sleeve.
It seems, rather than being on the spectrum I'm a "schizo" something-something-something. I'm afraid I didn't catch the full diagnosis. DSM labels are like your kid's Pokemon monsters. What grown-up with a life really has the time to keep up with them all? But I invite Roy to publicly post his diagnosis to this group so that I might be properly discredited as an autistic advocate in a public forum.
This later part was all relayed to me as he walked briskly to his car, making so little eye contact with me that he practically called out for a session of ABA and Christmas day parental mourning.
I'm sure you can imagine my internal dialogue:
"Huh? What? What are you doing? You can't walk away now after dropping that on me! I'm going to need counseling. YEARS of therapy! Preferably behavioral because that's science! I need to come to terms with this diagnosis! This changes my entire life! I need to know that there's hope for me and that I can live with this schizo-whatever-whatever and still have hope for a happy and productive life!"
Perhaps I'm being unfair. After all, was not the magical diagnosis enough, and, in his quick retreat, he sure seemed like he had some place he needed to be. Perhaps, and I'm only speculating here, Saturday is the day of the week he reserves for mourning his own adopted child's autism.
And, of course, declaring me off the spectrum was probably an easy call. After all, if I am on the spectrum, it's not like Sanders or the Marcus Center are in a position to make a buck off of it.

In reality, his is the game pseudo-scientists play all the time, employing the magical intuitive powers that their credentials supposedly convey to conveniently discredit their adversaries.
Sanders was explicit that if I continue to pursue matters as I have that I will soon find myself barred from meetings such as this one. How much easier that will be if he is in a position to use his special magical insight to claim that his critic doesn't have standing.

I have spent years now arguing just how untenable the behaviorists' and their allies position are. I have shown you how they can't answer the simplest of questions.
Sanders, being the stupid man that he is, thinks that if he bars me from the meetings that he will have won. If it happens it will instead be a complete and total vindication for myself. I have, since my early days in Bob Morris' group, argued that you can't do business with these people. Nonetheless, in the time since then, I have treated them as the scientists I know them not to be. I have asked them to justify their uses of simple words they use everyday like "disorder" and those from our community who have attended these meetings have seen their complete inability to do so. What more do I need to do to show their essential fraudulent nature?
When I am barred (and i think it is a matter of when rather than if) I will have demonstrated, once and for all and for everyone here in the autistic community to see, that the behaviorists and their allies are unwilling to engage the autistic community in any form of real dialogue or debate that does not at first begin with a servile acknowledgment of their superior knowledge and authority in all matters pertaining to us.

I was asked, after the meeting, why it was that I couldn't be nicer.
Bob Morris was nice. And they repaid his niceness by treating him with contempt and running the clock out on him.
The people charged with fixing us, hate us. Loathe us. Talk about us as tragedy, a collection of deficits and disorders. They encourage parents to MOURN when their children are identified as us. They think the best that we can ever be is a crude approximation of them. They compare us to animals. They compare us to AIDS. They compare us to cancer. They compare us to death.
And in doing all this they enrich themselves.

The time for nice, from me, or anyone, is past.

Way, way past.

Walt Guthrie

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