Autism Talk TV - Ep. 6 - Steve Silberman - Pt 1

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To be frank, to the point of crass (apologies, but no easier way to state the fact here) - Autism Speaks based upon Mommy Alison Singer is a train wreck waiting to happen. Alison Singer "Mommy Reinvented" is woefully ignorant.

Her sole qualifiction: She's a mommy. This means she knows how to lay on her back and spread her legs. Whilst this might impress Mr. Singer, it doesn't impress me much......That's not worthy even to list on any given resume. So, no wonder Autism Speaks didn't work out.

Ahem, did the modest Lab Pet say that aloud? Indeed. I'm a scientist, Alison. If Autism Speaks grows up, and one hopes they are getting there, they'll not need Mommy Alison any longer.

There sure is a lot of controversy about Alex accepting underwriting support from Autism Speaks. I know many of you probably think they are calling the shots or somehow influencing what Alex and my son put together, but they are not. Alex and Jack do their own stories their own way.

When I joined the Autism Speaks board earlier this year I made the point that they should be working with other groups, and this affiliation with Alex is one such example. Many of you have been quick to criticize Autism Speaks for not having autistic people working for them . . . I held out Alex and Jack for video production, and you criticize them them for taking up the offer. Well, Jack and Alex are on the spectrum, and they are going to help Autism Speaks with video production. That's the kind of inclusion you asked for, and I think it deserves support, not ridicule.

I agree that Autism Speaks has put out material and espoused positions that are offensive to many on the spectrum. I was troubled by much of that stuff myself. The question is . . . what does one do about it? Most of you here complain and say you want nothing to do with them. But what does that accomplish? With or without you, they will raise money and spend it as they see fit. They will also market and fund raise as they choose. I felt I could make a greater contribution by joining the organization and working to change the ways they present themselves and autism, and to promote research that benefits people on the spectrum today. I believe I am succeeding at that goal; I guess time will tell.

Meanwhile, why don't you consider giving them a chance, and see where it leads.

The 600% thing may be misleading, but it's still real. Is some of it caused by more inclusive standards in the new DSM? Sure. Is some caused by much greater public awareness? Sure. Is some caused by increases in certain kinds of autism . . . probably. There have not been any studies to clarify this point because there is no data on the prevalence of certain kinds of autism in years past - there's only data on the whole spectrum. It's very hard to explain the reason for the increase and no one has figured out a way to determine if certain conditions like childhood disintegrative disorder are increasing, or just more visible. The same can be said for Asperger's.

The Silberman article talks about pockets of autism in hi-tech areas where geek parents are drawn. But is there more autism in total, or did they simply gather the autistic people from a broad area in one place, much the same way that a science fiction convention gathers Asperger people for a short while?

That said, there is still this vast increase in diagnoses. And no matter how you feel about how that came to be, those people still need services. So what are we gonna do? One of the commenters on another thread here said "many of us live on disability." Well, I am 53, and when I was growing up, there was NO DISABILITY for people like me (or like many of you, for that matter.) That is one obvious result of this diagnostic explosion.

But that is not the point of my post . . .

Autism Speaks is a big organization with a loud voice. If you don't like what they say, go inside. Give them reasoned presentations of what they might do different; give them a chance to change. That's what I am trying to do. What would you say instead?

Regarding what LabPet wrote about Alison Singer I have something to say.

I am aware that if you are the spouse of or parent of someone with a condition then it is possible that you will become educated in it far more than the average member of the public. Same applied to medical staff, some nurses might learn a heck of a lot about a condition, which they treat on a regular basis.

But the big but is that "association with people with condition X does not mean that the person will be guaranteed to learn about the condition". The worst cases are people who have worked or lived closely with people with a condition, then drawn conclusions which they then refuse to allow to be tested. I hold the view that it is OK to create a hypothesis using inductive reasoning. But then the hypothesis must be tested in some way.

I recall meeting a woman who claimed that the wifes of drunkards get breast cancer as a result of their husbands drinking. This instantly struck me as an odd idea, but I guess that in the 1940s if you suggested that X-raying a woman's lower torso might harm her unborn child then many people would think you had an odd idea. How odd the idea is not important, what is important is "will the hypothesis resist an attempt to show that it is false".

I asked this self-appointed cancer expert why she held her view and she spouted some psychobabble. I then asked her how did she know if it was true, I pointed out that women with sober husbands sometimes get breast cancer. I also pointed out that her idea was very different to the accepted ideas in biology and medicine as to how cancer is induced, so I asked for her view on the mechanism by which drunken husbands are carcinogenic. She then retreated behind the screen of "I have worked with women with breast cancer so as a result I know what causes the disease". I think that this is a very poor system of thought.

I think that some parents of children with autism play the same silly card of "because I have a child with XXXXX I must be an expert on the subject".

This is silly in the same way as a man could work with something all his life and not have any idea of some of the aspects of it. For example a man on a building site could hammer copper rods into the ground all day long and still not understand that the rods are to be used for electrical earth connections. All the man might know is to drill and hole and then use a hammer to whack the rod into the ground.

If the nurse had a theory that working with radium, dog ownership, too much sex, bras, drinking milk or staring at the moon for too long caused the cancer and was willing to test the hypothesis in some way then I would have some more respect for her and her ideas. (My best first suggestion would be to compare two populations of women (such as dog owners vs. non dog owners)

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Health is a state of physical, mental and social wellbeing and not merely the absence of disease or infirmity I am not a jigsaw, I am a free man !

Diagnosed under the DSM5 rules with autism spectrum disorder, under DSM4 psychologist said would have been AS (299.80) but I suspect that I am somewhere between 299.80 and 299.00 (Autism) under DSM4.

I must admit, Labpet, that the one sentence made my jaw drop ... it sounded so NOT like you to me.

Just goes to prove people are full of surprises

Long run, I tend to think that is a good thing. Keeps life from getting boring.

Still, if I didn't know you I would have considered that crude and not scientific and edited it out ...

Just so you know, LabPet, Alison Singer is no longer part of Autism Speaks

Please tell us why Alison Singer has gone. If you do not want to say it in a public manner then feel free to PM me. I would so love to know why that person has gone.

_________________
Health is a state of physical, mental and social wellbeing and not merely the absence of disease or infirmity I am not a jigsaw, I am a free man !

Diagnosed under the DSM5 rules with autism spectrum disorder, under DSM4 psychologist said would have been AS (299.80) but I suspect that I am somewhere between 299.80 and 299.00 (Autism) under DSM4.