Saturday, May 02, 2009

Autism Advocacy? Anti-ABA Activist Michelle Dawson at the Supreme Court of Canada

Elizabeth Svoboda, like Erin Anderssen before her, has received criticism from Michelle Dawson, for daring to characterize her activities in ways that Ms Dawson, an outspoken public figure, does not approve of. Her letter reacting to the Svoboda article about the Neurodiversity movement in Salon.com contains a number of points of disagreement including her role as a crusader and, in particular, her role before the Supreme Court of Canada in Auton where she intervened as an "autistic" a person with an unspecified Autism Spectrum Disorder.

I actually agree with Ms Dawson that it is inaccurate to state that she personally:

"convinced the Canadian Supreme Court to overturn an appeal that would have provided state funding for ABA therapy."

Apart from the Appellant British Columbia government a number of provincial governments intervened seeking to have the Supreme Court of Canada reverse the lower court orders directing the BC governement to fund Early Intensive Behavioral Intervention (ABA). The Supreme Court of Canada agreed with the various governments' arguments which were essentially based on the premise that it was the role of legislatures, not the courts, to decide what treatments should be considered medically necessary for what disorders. According to the governments' submissions the absence of evidence that the autistic children involved in the case had been discriminated against with respect to the provision of services determined by the legislature to be medically necessary the Courts erred in intervening under the equality and non-discrimination provisions of the Charter of Rights and Freedoms to order funding of EIBI (ABA) for autistic children.

While I agree that Ms Dawson's role in Auton was probably not determinative, I do agree with Ms Svoboda that Ms Dawson is, and has been, a "crusader" or activist. Ms. Svoboda refers to her as an "autistic-rights" crusader. Ms Dawson was in fact before the Supreme Court of Canada, not just to "provide information to the court that it did not already have" as she claims in her letter to Ms Svoboda. In Auton Michelle Dawson was there as an anti-ABA activist opposing ABA for autistic children. In that proceeding she opposed the parents' request that the SCC uphold the lower courts' Orders directing the BC government to fund EIBI (ABA) for autistic children.

In Auton, The Orders of the Supreme Court of British Columbia and of the British Columbia Court of Appeal directed the BC government to fund early intensive behavioural therapy for children with autism or autism spectrum disorder. Failure to do so constituted a breach of the childrens' rights under s. 15(1) of the Charter. Ms Dawson, in the interveners factum filed on her behalf, and available online, expressly opposed the request of the autism parents involved to uphold those orders by asking the SCC to reject the premise of those Orders which were the findings by the lower courts that the refusal by the BC government to fund EIBI (ABA) treatment for autism infringed s. 15(1) of the Charter:

80.
The following orders are requested:


That the Respondents’ request to uphold the British Columbia Court of Appeal finding of an infringement of s.15(1) in the particular circumstances of this case be denied.

In the argument portion of her factum Ms Dawson takes issue with the science demonstrating the effectivness of ABA. She clearly opposed ABA in the proceedings on that basis contrary to the views of credible agencies which had reviewed the scientific literature on the effectiveness of ABA and contrary to the expert witnesses in the case, including the BC government's expert witness. She also opposed ABA on the grounds that, in her not so humble opinion, the practice of ABA was unethical because it could extinguish autistic behaviors and because "autistics' were not involved in the practice.

Ms Dawson had also expressly stated her opposition to ABA in the Notice of Application filed on her behalf in which she sought leave to intervene in the Auton proceedings:

5. The applicant is concerned that the judgments of the court below appear to endorse the principle that a particular type of treatment (Applied Behaviour Analysis) constitutes a medically necessary treatment for autistic individuals such that the failure of parents to provide that treatment or the failure of autistic individuals to seek that treatment could constitute a deprivation of basic medically necessary principles;

The Supreme Court of Canada summarized Michelle Dawson's position in Auton succinctly in paragraph 5 of that Court's decision:

"While increasingly accepted, Applied Behavioural Analysis (“ABA”) or Intensive Behavioural Intervention (“IBI”) therapy is not uncontroversial. Objections range from its reliance in its early years on crude and arguably painful stimuli, to its goal of changing the child’s mind and personality. Indeed one of the interveners in this appeal, herself an autistic person, argues against the therapy."


Ms Dawson, like anyone, can reasonably disagree on subjects of public interest. It is not reasonable though for her to contend that she has not been a "crusader" or activist. She has been very active in a number of forums offering her view of what it means to be an "autistic". She has publicly opposed ABA treatment for autistic children on what she considers to be scientific and ethical grounds before the Supreme Court of Canada and the Canadian Senate.

Michelle Dawson may prefer now to be known solely as a researcher but she has been, and remains, an activist with her own ideological, and sometimes political, agenda. That agenda is one which includes opposition to ABA treatment of other people's autistic children notwithstanding the desires of the childrens parents that they receive such treatment and notwithstanding the opinions of a number of credible authorities that ABA is solidly evidence based and supported in its effectiveness at reducing self injurious behaviors in autistic children and helping them to acquire specific intellectual, social and communication skills.




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18 comments:

autistic self-advocate said...

Harold,

I have read various posts on Michelle Dawson's blog. She has stated she has "autism." That means she has an Autistic Disorder diagnosis. Her diagnosis is not debatable.

What right do you have to question her autism spectrum diagnosis?

What do you have against Michelle Dawson, an adult with Autistic Disorder and severe challenges?

- Katie

Autism Reality NB said...

Katie

I have nothing "against" Michelle Dawson.

I disagree with her publicly expressed views about the science and ethics of ABA treatment of children with autism.

I disagree with her public efforts to prevent autistic children in Canada from receiving ABA treatment which is what she did in the Supreme Court of Canada in the Auton case, before the Canadian Senate committee which examined funding for autism inteventions in Canada and her numerous appearances in the Canadian media, particularly on the publicly financed Canadian Broadcasting television and radio services.

I disagree with Ms Dawson's efforts generally to prevent parents of autistic children from obtaining ABA treatment for their own children and her implicit dismissal of their right and responsibility to do so as parents.

Members of the public generally, and parents of autistic children in Canada specifically, have the right to disagree with Ms Dawson when she expresses her views on public issues affecting our children.

I did not challenge Ms Dawson's diagnosis. I do not know what it is because it is not identified in the materials I have read such as the Auton court materials filed as part of her submission. Her diagnosis is relevant to an assessment of her statements in the SCC and elsewhere as an "autistic".

You appear to assume that her self references to being autistic meant that she has been diagnosed with Autistic Disorder rather than another Autism Spectrum Disorder. If you can provide a reference, and preferably a link, where she has identified her diagnosis as Autistic Disorder please do so.

When Michelle Dawson, you or I, speak on any public issue other members of the public have a right to disagree and express their opinions just as Ms Dawson herself does frequently. Just as you do, and did in this comment.

You have questioned my right to speak about autism disorders when, in doing so I express my disagreement with a person with an autism disorder. I am surprised, and disappointed, that you appear to believe that parents of autistic children should remain silent about questionable characterizations of autism and ABA just because such questionable characterizatons are made by a person with an autism spectrum disorder.

Penny said...

ABA, 3 years and 3 months of it, is something I wish we'd never done. It made our child more autistic, robotic, prompt dependent, created a great deal of anxiety that lingers today, almost five years after we stopped. All ABA is not *good* ABA. There are better, kinder ways to intervene than ABA.

cmasp said...

Harold,

I very much agree with your blog post and comments to autistic self-advocate.

A diagnosis of blindness doesn't make anyone a medical expert on blindness. A diagnosis on the spectrum doesn't necessarily make anyone an expert on autism.

Obviously, people who are blind and on the spectrum have a vested interest in matters pertaining to them, and have a right to their opinions. But it doesn't make them immune from being wrong.

I have an official diagnosis of Aspergers. I firmly believe Michelle Dawson is wrong, and doing many of us on the spectrum a severe disservice because of her activities.

This is a real shame, because I have read some of her opinions, and think she has a number of unique insights, and a very good mind. If put to other uses, I think she could help us all. It is her insistance that if she doesn't believe in a treatment, no one should have it, that I think causes many to ignore some of the good insights she has.

Thanks for your thoughtful analysis, as always.

Chris (cmaspt on Twitter)

farmwifetwo said...

Waves hand!!!

ABA in this country is as different per provider as it is per child that has autism.

When they actually regulate the therapy, and an Occupational Therapist supervisor that supposedly knows all about autism and her "daycare trained" supposed autism specialists that are completely inflexible to meet and individual childs needs are removed from the practise of ABA in this country.... we'll agree.

When these supposed autism specialists actually consult with OT's and SLP's and don't claim to know all there is to know about these professions as well... we'll agree.

When they treat children as children and not little robots that must complete one task perfectly before moving onto another. That refuse to work with the family first, not their little book of notes... we'll agree.

Now, saying that, the concepts - breaking tasks into smaller pieces, token systems - and other tools used that are part of the general theory of ABA... I use daily and so does the school.

It was the unending, sitting at the table, Pavlov's dog training, disaster, parents and other professionals know nothing about autism... I have issues with.

It needs to be researched properly and regulated. LONG before it's funded in full. And if it's funded in full... ALL autism therapies - floortime to speech and OT - need to be funded as well.

Because when the very nice SLP in your house stops playing the game to get your kid to do "work" before she'll play some more, and your kid walks away and refuses to have anything to do with her... and it took 3 sessions for him to let you walk from the kitchen table to the sink.... So that every time after that they "tidied up" and her "work" had to be put at the door out of sight before he'd "play".

There's something seriously wrong with ABA in this country.

S.

Autism Reality NB said...

Penny and Farmwifetwo

It is unfortunate that your individual results were not good. My son has learned many skills and reduced problematic self injurious behavior with ABA. He receives ABA instruction at school where he looks forward to attending every day. See the perfect attendance photos on my sidebar.

But the fact is that ABA is supported empirically by many studies and several credible professional reviews of those studies from the US Surgeon General in 1997 to the AAP in 2007.

No other autism intervention enjoys anywhere near the same level of objective empirical support for its effectiveness.

It is really too bad if FW2's child was rendered robotic by her ABA practicioners. My son has not had a negative experience and I know of no serious study supporting the "robotic" mischaracterization of ABA.

Thanks for your comments.

Autism Reality NB said...

Chris, nice to hear from you.

Harold

Penny said...

Harold,

Allow me to explain why I wish we had not done ABA. And it's not because it didn't "work".

ABA, for us, did EXACTLY what it targeted. My child was considered a success because she flew through her programs. But it made her more autistic, not less. More rigid. More prompt dependent.

She knew lots of "stuff" but had no reciprocity, no interaction. She was one sided.

She was happy, and enjoyed it.

The behaviorists (we were on our 4th bcba when we finally quit) didn't understand development. They only understood behavior. There's a difference. The BCBA's came from two states, three university programs, and one had experience at a Lovaas replication site on her resume.

I've blogged about aspects of it quite a bit.

Here are two blog entries:

http://notnewtoautism.blogspot.com/2008/10/oldie-young-man-on-bicycle.html

http://notnewtoautism.blogspot.com/2008/12/why-i-decided-to-homeschool.html

Please don't make the mistakes we made.

Michelle Dawsom has some important points. (I'm not saying she's 100% in the right, but we need to listen to her message carefully. I wish I had.)

Autism Reality NB said...

Penny

ABA programs properly practiced include prompt fading. If ABA was done properly with your child and did indeed work then prompt fading would have been included and would have worked. With all respect it does not sound like your child's program included prompt fading, or if it did it was not done properly.

As for Michelle Dawson the subject of this post is her claim not to be a crusader. That claim does not pass the giggle test with respect. Parents across this country who also have their childrens' interests at heart seek ABA for their autistic children. Ms Dawson with no direct personal relationship or ties to these children, has appeared before legal and political tribunals and the media in opposition to those efforts.

As for the merits of ABA I know many more stories of persons like my son who do not "turn robotic" from ABA. ABA is in fact an individualized intervention and one which is both in demand by parents seeking to help their children across North America and endorsed by many experts and profesisonal reviews as evidence based and effective.

You are free to listen to Ms Dawson if you wish. She has no expertise in ABA or any other autism intervention that I am aware of. Her ABA comments as articulated on the internet, that I have read, are exaggerated distortions of ABA and are not made respectfully or reasonably.

As for her autism insights. Again, I don't know what her specific diagnosis is. But I see no reason to take her "insights" into autism a being applicable to all persons with autism spectrum disorders. You of course are free to subscribe to her views if you wish.

My son's abilities, disabilities and personal characteristics bear little resemblance to Ms Dawson. She has no particular information that I would see of assistance to my efforts to help him live a better, fuller life.

Respectfully,

Harold

Penny said...

I am free to subscribe to her views?

That's not what I'm doing.

I'm telling our story in hopes that no other family will make the mistakes we made.

I held on to ABA for waaaay too long because of the "science" behind it.

I know I am not the only family in this situation. I've met many.

ABA is not the end-all-be-all for autism. And it's not all good.

And folks on the autism spectrum warned me.

That's all I'm saying.

Autism Reality NB said...

appear to accept the critique of ABA by SOME people on the autism spectrum.

In your replies you mentioned prompt dependency as an issue you have with ABA. When I pointed out that a good ABA program includes prompt FADING you did not reply to that point. It doesn't seem that you want to acknowledge that MAYBE your child's ABA wasn't done properly.

Anecdotal evidence aside the empirical evidence is overwhelmingly supportive of ABA and no other intervention comes close in terms of reducing seriously problematic behavior like self injury or helping autistic children acquire skills.

Not all persons "on the spectrum" subscribe to the anti-ABA critiques. But regardless I will seek counsel from professionals who actually work with autistic children trying to help them not persons who happen to share some of my child's diagnostic criteria but have no personal or professional interest in his outcomes.

Penny said...

There was a lot more done badly in our ABA than the way they thought they were fading prompts and prompt dependency.

But all four BCBA's who worked with us, from two states, three different universities -- all of them worked the same way. None of them came in and corrected what the others had done.

That makes me sad.

Stephanie Lynn Keil said...

Michelle Dawson realized that being an "activist" doesn't make sense sense she claims to have autism and pretty severe autism at that.

She stated that she was incapable of being an activist or participating in "autistic culture."

I find it strange that she decided to finally mention that now.

Any logical person knows that it is impossible for a truly autistic person to be an advocate, activist, crusader or anything of the sort. I noticed this logical fallacy immediately with the so-called "autistics" and this is actually what made me question the validity of their autism.

I've stated this ridiculous fallacy many times and kept having to remind everyone that I wasn't an advocate or anything of the sort because that is impossible and I could really care less.

Two posts before the letter is something about "People First," an advocacy thing she included in her presentation, but in the letter she claims she isn't an "advocate" or "crusader" because she is incapable.

She is beginning to sound just as illogical and false as Amanda Baggs, just keeps getting "autisticer" and "autisticer" to keep the story straight. I didn't dispute Michelle Dawson's diagnosis of some kind of ASD, such as Asperger's or PDD-NOS until recently. Now, I am not so sure...

Meanwhile I, and every other autistic person I know whose diagnosis is indisputable, is getting normaler and normaler as we age since autism is a developmental disorder that normally improves with age and appropriate treatment...

Autistic self-advocate said...

Harold,

"While Ms Dawson has a specific diagnosis of autism..."
http://www.sentex.net/~nexus23/naa_fac.html#part_one

That means she has an Autistic Disorder diagnosis.

I, a person with an Asperger's Disorder diagnosis, do not have the right to question Michelle's diagnosis.

I am not a psychologist, physiatrist, or other certified professional; therefore, I do not have the right to question neurological disorder diagnoses.

I also do not have the right to question the diagnoses of people with Asperger's Disorder such as: Ari Ne'eman, Scott Michael Robertson, Alexander Plank, or Katie Miller.

I do not have the right to question the diagnoses of people with Autistic Disorder such as: Dora Raymaker, Amanda Baggs, Shelley, Stephanie Lynn Keil, Conor Doherty, or Charlie Fisher (Kristina Chew's son).

- Katie

Autism Reality NB said...

Katie

You are accusing me of something I have not done.

I am going to say this one more time and I would appreciate it if you would read what I say carefully before repeating your accusation.

I do not challenge Ms Dawson's diagnosis, whatever that is. I do not actually know what Ms Dawson's specific diagnosis is. And your reference does not indicate that either.

"Autism" is not a specific diagnosis. The DSM lists five specific Pervasive Developmental Disorders, which are now referred to as Autism Spectrum Disorders.

DSM-IV:

299.00 Autistic Disorder

299.80 Rett's Disorder

299.10 Childhood Disintegrative Disorder

299.80 Asperger's Disorder

299.80 Pervasive Developmental Disorder Not Otherwise Specified
(Including Atypical Autism)

I am not going to repeat this again and if you simply make the same accusation without actually reading and responding to what I have just said I will not bother posting it again.

Autistic self-advocate said...

Harold,

I apologize for accusing you of challenging Michelle Dawson's autism diagnosis.

Michelle did make some good points in Auton.

- Aversives should never, EVER be used in Applied Behaviour Analysis, for children with Autism Spectrum Disorders or children with other disorders or conditions.

- ABA is not "medically necessary." Autism is not a medical but neurological disorder. Adults on the autism spectrum - such as Michelle Dawson and Alex Bain, do not need ABA to lead productive, quality lives.

- Alternatives to ABA such as: Speech, Occupational, Physical, music, other therapies, and some biomedical treatments are just as beneficial. ABA is not the only science-based treatment for people on the autism spectrum.

- Katie

Autism Reality NB said...

Katie

Not all persons with autism spectrum disorders lead the kind of lives enjoyed by the persons you named.

There are many who live in residential and institutional facilities dependent on the care of others. I have visited two institutions in the province in which I live and personally met some autistic persons living there.

Some autistic children endanger their lives through self injury, self starvation or lack of understanding of real world, every day dangers, like automobile traffic. They need special care, provided largely by ABA. I have been personally involved with ensuring that such services continue in my province and met with the professionals involved in providing these badly needed services.

I have also met some persons with Aspergers who function well in the world despite some challenges. One such person was actually an important part of our provincial Autism Society Board of Directors. But examples of persons at the high functioning end of the autism spectrum should not be used to hide the realities faced by those persons with more severe autism challenges.

No other therapy or intervention is supported with the same degree of scientific, empirical research as ABA. That is not just my opinion. That is the opinion of several credible agencies in the US over a 10 year period from the US Surgeon General in 1997 to the NY State Department of Health, the Maine (MADSEC) Autism Task Force, the Association for Science in Autism Treatment and the American Academy of Pediatrics in 2007.

This is what the AAP said in its 2007 report about ABA:

"The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4"

That is the documented evidence in support of ABA and how it can help autistic children. No other therapy is mentioned by the AAP report as having anywhere near that level of evidence of its effectiveness.

Claire said...

From Autistic Self-Advocate, "Autism is not a medical but neurological disorder." I am genuinely curious as to how a neurological disorder is not medical in nature? Are neuro. disorders not "simply", in layman's terms, screwed up nervous systems...aspects of which can be treated or alleviated with medication and/or supplementation (or a variety of other treatments for that matter)? Am I wrong on this one?? Post-stroke, my daughter has a host of "neurological disorders" all of which are decidedly medical, regardless of the fact that I am not fond of the medical system.