Tuesday, December 12, 2006

Talking to the Senate

A while back, Autism Diva wrote about some testimony I gave as a witness in Canada's Senate. This was for the Standing Committee on Social Affairs, Science and Technology hearings about autism treatment funding (and about a national autism strategy).

The official transcript of the hearing where I spoke has now been posted. You can find it here.

I haven't looked through it carefully, but at least some of the errors in the first effort at transcribing have been corrected. I can spot one place where my correction wasn't accepted, and the "correction" is worse than the original. I was trying to say "Boyd and Corley", and now they are insisting that I said "Boyd and Connelly", which gives a fair indication of how poor my enunciation can be when I'm not reading word for word from a script. And when I'm stressed right out. I've just spotted another place where something that was correct first time around was changed so it is now incorrect, based no doubt on my lousy articulation. I'm definitely a stenographer's nightmare.

Last time I appeared before this Committee, I read my brief word for word. In this case, I had insufficient warning, and apart from the words I had from other people, who were generous in allowing me to present their writing, I was not prepared at all.

I remember vaguely that after I spoke and I was sitting there shaking, an enthusiastic person rushed up to me and said things and I had to ask, "Who are you?", and it turned out to be one of the Senators. That was right before I was whisked out of the room and backwards through security and out to a taxi stand because I was about to be late for my train (the last one to leave town).


Lucas said...

Don't know how it sounded but it still read really well. I'm not sure how many if any and who listened in the room though going by what something a senator later said...

Senator Keon said:

" Ms. Ofner, while you testified, I was thinking that we did not need anybody besides you and the former mayor; all other evidence was unnecessary."

...there appears to be an incredible quantum phenomenom bending reality localised exactly within the dimensions of that room.

Ms Ofner's statement sent shivers up my spine, so I don't know if Mr Keon was awake when you were speaking.

I can only imagine the abuses that would occur if only behaviourists were permitted to make reccomendations on Autism treatment. I'm horrified and ironically because of something which I and Ms Ofner agree on: "If you are a clinical psychologist and your Ph.D. is in ABA, you always recommend ABA treatment because you understand what behaviouralism is and how this treatment works."

So, a behaviourist will always reccomend ABA, which is why Ms Ofner would want it. She sees no problem with this, even though there isn't a behaviourist anywhere that can say ABA 'works' for Autistics truthfully.

She was basically contradicting what is possibly the only consensus, mentioned to the commitee earlier, in Autism: no one treatment, method of therapy is ideal for every individual.

I don't understand why you were questioned based on the views of someone else who spoke with a senator, but Ms Ofner or anyone else was asked to clarify their position in light of a different view. The questions I'm refering to were Mr Munsun's and Mr Cochrane's.

Lucas said...

Meant to say that Ms Ofner and anyone else was *not* asked the kind of questions asked of you: where confronted with another point of view and asked to speak in light of it.

Michelle Dawson said...

One thing I found interesting (and I have Dr Ofner's brief) is that Dr Ofner, claiming expertise in the science of ABA/IBI (and the help of other autism advocates and one famous behaviour analyst in preparing her position), cannot tell a controlled trial of ABA/IBI from an uncontrolled trial of ABA/IBI.

Either that or Dr Ofner, an important public health academic, can tell the difference, but doesn't think autistics deserve a standard of science that recognizes the difference between studies that have and don't have comparison groups. It's always hard to tell with FEAT, whether they don't know the science, or whether they know, but don't bother with it when it comes to autistics.

GFriend said...

Michelle--I want to thank you and other autistic people for having places on the web. I am an American mom of a 3 year old lving in BC and currently going through the BC system at SunnyHill in an autism evaluation for my son. If I had know what the political climate here in BC was towards autistic people, I probably wouldn't have taken the job I was offered up here last year.

Some questions:

I have been searching various sites by autistic people to try and find interviews and/or narratives of what ABA/IBI is like from the autistic's POV--I've found a couple small descriptions, but no in-depth interviews. Do you know of any online communities where autistic kids/teens/adults would be willing to share their experiences in ABA/IBI?

Also, have any of the victims of Lovaas's studies written about their experiences?

Frank Klien made mention on his site of AS folks who had undergone ABA/IBI and presented as "notmal" experiencing great depression/anguish later in life when the pressure to conform simply got to be to much--do you know of anyone who has written about it?

Also, has Lovaas ever apologized to the victims of his original study who received shock treatment?

You spawned a great deal of outrage in me--thanks for that :D

Michelle Dawson said...

Hi Gfriend,

There are long published interviews with a young man (the interviews go up to age 18) who as a child "succeeded" in an early ABA/IBI directed by Dr Lovaas at UCLA (Green, 1987). These interviews (there is an interview with this young man's parents also) are extremely disturbing to read.

This early ABA/IBI was not the Young Autism Project directed at autistic children, but the concurrent Feminine Boy Project directed at very young boys considered "at risk" of non-heterosexual development. As with the YAP, Dr Lovaas and colleagues declared the FBP to be a great success in peer-reviewed papers.

I wrote about the FBP here, among other places (there are notes, sources, and references).

Dr Lovaas has not apologized for using electric shock, or extreme food deprivation, or any other extreme method (there are some pretty hideous methods recommended in The ME Book) he deemed at various times to be necessary in the treatment of autistic children.

I don't know of a forum where autistics who have undergone ABA-based interventions discuss this. I know of some adults who had ABA-based interventions when they were younger. Amanda Baggs has written about receiving both aversive-based ABA, and "fun", positive-reinforcement-based ABA programs.

I've also written about the consequences of early ABA/IBI programs as reported by a nine-year-old boy who had been in ABA programs for 6 years when he testified in the Wynberg case. You can read a bit about this here and here.

There are even more informal sources, like the recent NYT article devoted to what the science hasn't done, which is following into school ages autistic children who "succeeded" in non-aversive early ABA/IBI. You can read this article here.

You can see that autistic children whose lives have been devoted to being trained to pass for normal have a lot of problems when they can't in fact pass. E.g., the young boy who cries, "Why am I like this? What's wrong with me?" Major behaviour analysts (Bridget Taylor, Sandra Harris) state that ABA has been oversold, and that the mainstreaming of ABA "successes" (this NYT article is only about children who "succeed" in ABA/IBI) is not a realistic goal. These "successes" are said to need ever more treatments and interventions because they just can't pass for normal.

There are also some hints in the science (e.g., Smith et al., 2002) that confirm what was testified in Wynberg, and reported in the NYT: that autistics in ABA programs learn that it's wrong to be autistic.

Anonymous said...

Off-topic: Am I the only one in the whole wide world that spells Autism with a capital A?

Was at my NAS Prospects course this week, for Aspie adults looking for work and this came up. I asked why Asperger's Syndrome was capital A and S while Autism was 'autism'. Got faces saying "Hmm, the mystery".

Lucas said...

Oh poopy, forgot to write my name! Lucas is me, my post is above.

Michelle Dawson said...

Asperger has a capital "A" the same reason Down in "Down syndrome" has a capial "D". Down and Asperger are the names of actual people. "Autism" is not, which is why autism doesn't have a capital "a".

GFriend said...

I think Lucas's question is one that relates to the disabilities rights movements of other folks--Deaf people, for example, capitalize "Deaf"; it's part of embracing deafness as an identity. Autistic folks might want to parallel.

Thanks for the links--I don't have enough time to post what I'd really like to in depth right now but I do hope parents may come across that NYT article--your link is the first time I've seen it.

GFriend said...

Michelle--I have just been reading up on some cognitive therapies for autism. Frankly, I'm kind of baffled as to why ABA and behaviorism have such a stranglehold on autism treatment and opinion (as opposed to cognitive/neurodevelopmental approaches to understanding). Do you have any thoughts/research on why that is the case? I imagine the cognitive scientists get either dismissed or ignored, for the most part--real understanding doesn't sell very well it seems.....a blog entry on the history of alternatives to ABA/IBI and why they haven't been widely accepted would be very interesting.

WRT: the folks who write on you blog as autism advocates, primarily in defense of the treatment options they have chosen for thier kids, I think of a wise maxim I heard once--that people argue most ferociously against things that they know might be true.

Michelle Dawson said...

Hi Gfriend,

As I've written many times before, I've been a harsher and more effective critic of cognitive science and neuroscience (the field I work in) in autism than I have of ABA in autism.

In fact, I'm not sure exactly what you mean, re "cognitive therapies for autism", or "cognitive/neurodevelopmental" approaches.

I'm aware of many approaches and interventions that could possibly fall under these banners, but I couldn't off-hand guess at which ones you mean.

Lucas said...

Dyslexic is another term which I often see spelt with a capital.

Epileptic is a term which I don't often see spelt with a capital.

Insomniac is a term which I see with and without capital in equal measure, I'm certain.

I ponder the mysteries.

GFriend said...

Michelle--I would be interested in getting references to your criticisms if you have them online. I have been working under The assumption (perhaps erroneous) that an understanding of the cognitive differences and strengths of autistic people might be a better way to approach helping them to cope with the demands of NT reality (via therapies that develop coping mechanisms in an appropriate way).

I was inspired my Morton Ann Gernsbacher's page (I have a background in linguistics, so I am partial to linguists in general, personal prejudice).

In my recent foray into the world of autism and autism therapies I find a dire lack of consideration for the POV of autistics who are undergoing ABA/IBI therapy by autism advocates. In BC, the provincial health authority has ABA listed as one of it's best practices for autism therapy--in fact, I think it is the only type that is considered for funding.

My thoughts on all of this are still kind of coming together, so what I am trying to say isn't very clear. I guess I find behaviorism so inherently cynical, although I understand why it sells. It is expedient and meets the needs of parents who really are still in a grieving/denial process about their children--they are sold a bill of goods that promises their children might become "normal", especially in the age where autism has been sold as a death sentence for parents.

I've assumed that cognitive theories about autism might lend better understanding of the differences between NT and autistic reality (and with that, a greater acceptance of inherent differences), but perhaps the cognitivists are as cynical as the behaviorists.

Michelle Dawson said...

Hi Gfriend,

I agree that an understanding of autistic cognitive processes is very important in helping autistics, though I see this at the level of understanding the atypical ways in which autistics process and analyze information, and particularly, the atypical ways in which autistics learn.

But I have a lot of problems with the cognitive science/neuroscience literature in autism as it is. My criticisms are mostly within peer-reviewed journal articles where I'm in the authorship (e.g., Mottron & Dawson, 2005; Mottron et al., 2006; Jemel et al., 2006; Gernsbacher et al., 2006; etc.), and also sitting in press in book chapters (e.g., Mottron et al., in press), and there should be more to come.