Saturday, October 28, 2006

Message to Andy Scott: Autistics deserve better

Andy Scott, a Liberal MP from New Brunswick, is pushing a National Autism Strategy for Canada. Like all our eminent "autism advocates", he's so busy trying to save Canada from the alarming affliction of autism that he has no time to bother with science, ethics, or basic human decency. This is a letter Mr Scott's office received on October 19, 2006. I've added references at the end.

Sir,

I've been alerted to a letter you've written to other MPs, which I found here. You make no mention that you consulted with any autistic people before making your decisions about our future. Also, I'm very disappointed to see, yet again, important political leaders spreading false, anti-scientific information about autistic people, as well as characterizing us in inappropriate and offensive ways.

For example, the Canadian Down Syndrome Society states directly that it is inappropriate and offensive to refer to people with DS as "afflicted with" or "suffering from" DS. Sir, I hope you will see fit to give the same consideration to Canadians who are autistic.

With respect to the science, there is a wide consensus in the peer-reviewed literature that there is no evidence for an "alarming" increase in the prevalence of autism (a few of the many possible references include Fombonne, 2001, 2003; Wing & Potter, 2002; Rutter, 2005; Barbaresi et al., 2005; Fombonne et al, 2006; Gernsbacher et al., 2005). There is instead evidence for a high, stable rate of autism (Chakrabarti & Fombonne, 2001, 2005). If you have been provided with different information, then you should regard these sources of information as non-credible. Canada is fortunate to be home to the most respected autism epidemiologist in the world, Eric Fombonne at McGill (he is also a Canada Research Chair). It's very disappointing that neither you nor your staff made the effort read the science or consult with renowned Canadian experts before spreading alarm about the existence of autistic people.

Using a current 1 in 166 figure (this is a consensual prevalence figure, not an incidence figure), but declaring that this represents an "alarming" increase in autism, both denies and stigmatizes the existence of autistics. You are denying the high, stable rate of autism which has been empirically documented. You are distorting the true picture of autism in Canada. Pushing an "autism epidemic" is a popular practice designed to spread fear and dread of autistic people as well as a sense of crisis, but it is anti-scientific and unethical. I do not understand why you are promoting an anti-scientific view of autism, sir, or why you believe this will help autistic people in Canada.

The ABA-based autism interventions which you are promoting are supported by a scientific literature which is enormous in quantity but very poor in quality. In 45 years of research in this field, there is only one randomized controlled trial (the standard of research applied to non-autistics) of ABA-based early intensive interventions for autism, and this study was a failure (Smith, Groen & Wynn, 2000).

There are also very few multi-year non-randomized controlled trials of this kind of intervention. Only one showed good outcomes for a large minority of autistics, and this study (reported in 2 papers: Lovaas, 1987; McEachin, Smith & Lovaas, 1993) was dependent on the use of physical punishment (contingent aversives), which is no longer acceptable practice. One of the better designed non-randomized controlled trials now has a presented 10-year follow-up which shows that the few children who did well in early ABA/IBI did not maintain their gains (Birnbrauer & Leach, 1993, 2006). No other follow up into school ages of a non-aversive ABA program is available.

A recent Canadian study (Eaves & Ho, 2004) showed no effect of kind or amount of any currently marketed autism treatment on outcomes in about 40 autistic children in the "crucial" 2-5 year range: some of the children did well, others less well, but this was unrelated to the kind or amount of treatment they received. Half these children were in ABA programs. There was no difference between the outcomes of the children who were or weren't in ABA programs. Another recent study (Sallows & Graupner, 2005) shows that neither intensity nor quality of ABA-based early intensive interventions is correlated with outcome measures; in fact, in this study, the control group outperformed the experimental group, and only by lumping the groups together (resulting in an uncontrolled trial) could this study claim a large minority of good outcomes. Indeed, not one controlled trial of ABA/IBI in autism has found a correlation between treatment intensity or overall quantity and outcome measures.

In 45 years of research, there has not been one peer-reviewed paper providing data about the adult outcomes of early ABA/IBI programs. Nor has there been a cost-benefit analysis that allows for more than three years of ABA/IBI--a level of service that has been rejected by ABA advocates in Canada, who are now demanding ABA/IBI across the lifespan for autistics. Therefore, your promise that ABA/IBI will save money in the long run has no current factual foundation. The assumption that unless autistics are extensively trained to be or act like non-autistics, then we are doomed to be burdens on society, is possibly becoming more and more true in a society where political leaders inform our communities that we are alarming, debilitated, afflicted, and suffering. But a thorough reading of the science would reveal that many popular assumptions about autistic outcomes are founded in clichés and prejudice, not in the available peer-reviewed literature.

Also, ABA/IBI is not, as all the experts for both sides in the Wynberg trial agreed, medical or medical treatment in any way. ABA/IBI was not pioneered or developed by medical professionals, nor is it researched or provided by medical professionals. ABA/IBI is about learning and education, which may explain why it is not necessarily funded as medical treatment.

Sir, you characterize autistic cognition as "enormously debilitating". The most replicated and robust findings in autism research are autistic strengths, strengths which are remarkably complementary to the non-autistic pattern of strengths. These strengths are found across all ages (toddlers to adults) and presumed levels of functioning. You can find a short, incomplete, and now out-of-date list (more strengths have been found and published) of these strengths in my Senate brief here (references at the end). As I wrote at the time, autistics can only achieve "normal functioning"--the ideal of ABA/IBI programs--by losing our very tenacious strengths, which are a great obstacle to our passing in any way for normal. By using words like "alarming", "afflicted", "suffering" and "debilitating" to describe autistic people, you are saying that you see no value in having a variety of abilities in society. Instead, you see autistics as sick, and as needing medical treatment until we become "healthy", which means "non-autistic".

Sir, I disagree, for scientific and ethical reasons. Autistics deserve much higher standards of science, ethics, and advocacy. We do not deserve the very low standards now considered by our leaders, political and otherwise, yourself included, to be good enough for autistics. Autistics should receive the assistance we need in order to succeed in society as autistic people. Your discarding of both science and ethics in order to make popular claims about saving Canadian society (and the Canadian economy) from autism does not help. Your contribution to and encouragement of the irrational and unbalanced nature of the public discourse about autism in Canada does not help. Your promotion of anti-scientific views of autism as what autistics deserve does not help.

I realize that autistics have been taught to accept low or no standards in how we are regarded and treated, and to be profusely grateful for this. This is what I've been forcefully and persistently taught myself. I do not think this is a good thing. Autistics have a lot to offer Canada, as autistic people. I am disappointed that you have not seen fit to consider this.

Regards,

Michelle Dawson
Pervasive Developmental Disorders Specialized Clinic
Rivière des Prairies Hospital
University of Montreal

References:

Barbaresi, W.J., Katusic S.K., Colligan, R.C., Weaver. A.L., and Jacobsen SJ. (2005). The incidence of autism in Olmsted County, Minnesota, 1976-1997: results from a population-based study. Archives of Pediatrics and Adolescent Medicine, 159, 37-44.

Birnbrauer J.S., & Leach, D.J. (1993). The Murdoch Early Intervention Program after two years. Behaviour Change, 10, 63-74

Birnbrauer J.S., & Leach, D.J. (2006, June). The Murdoch Early Intervention Program at 10 years. Association for Behavior Analysis Annual Conference abstract. Atlanta, GA.

Chakrabarti, S., and Fombonne, E. (2001). Pervasive developmental disorders in preschool children. Journal of the American Medical Association, 285, 3093-9.

Chakrabarti, S., and Fombonne, E. (2005). Pervasive developmental disorders in preschool children: Confirmation of high prevalence. American Journal of Psychiatry, 162, 1133-41.

Eaves, L.C., and Ho, H.H. (2004). The very early identification of autism: outcome to age 4 1/2-5. Journal of Autism and Developmental Disorders, 34, 367-378.

Fombonne, E. (2001). Is there an epidemic of autism? Pediatrics, 107, 411-2.

Fombonne, E. (2003). The Prevalence of Autism. The Journal of the American Medical Association, 289, 87-89.

Fombonne, E., Zakarian, R., Bennett, A., Meng, L., & McLean-Heywood, D. (2006). Pervasive developmental disorders in Montreal, Quebec, Canada: Prevalence and links with immunization. Pediatrics, 118, 139-150.

Gernsbacher, M.A., Dawson, M., and Goldsmith, H.H. (2005). Three reasons not to believe in an autism epidemic. Current Directions in Psychological Science, 14, 55-58.

Lovaas, O.I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3-9.

McEachin, J.J., Smith, T., and Lovaas, O.I. (1993). Long-term outcome for children with autism who received early intensive behavioral treatment. American Journal on Mental Retardation, 97, 359-72.

Rutter, M. (2005). Incidence of autism spectrum disorders: Changes over time and their meaning. Acta Pediatrica, 94, 2-15.

Sallows, G.O., and Graupner, T.D. (2005). Intensive behavioral treatment for children with autism: Four year outcome and predictors. American Journal on Mental Retardation, 110, 417-438.

Smith, T., Groen, A.D., and Wynn, J.W. (2000). Randomized trial of intensive early intervention for children with pervasive developmental disorder. American Journal on Mental Retardation, 105, 269-85. Erratum in American Journal on Mental Retardation, 105, 508. Erratum in American Journal on Mental Retardation, 106, 208.

Wing, L., & Potter, D. (2002). The epidemiology of autistic spectrum disorders: Is the prevalence rising Mental Retardation and Developmental Disabilities Research Reviews, 8, 151-162.

Wynberg v. Ontario, 2005 CanLII 8749 (ON S.C.)

7 comments:

Joseph said...

I liked your reference to Down's. I've seen the DS websites and it's amazing how different the discourse there is compared to the autism discourse. It's still medicalized a bit, but not nearly as much.

For example, the aim of the Down's Syndrome Association is "Helping people with Down's syndrome to live full and rewarding lives" and one of their mission points is that "We champion the rights of people with Down’s syndrome." There's no mention of cure.

The National Down Syndrome Society's website has a list of their values, which includes: "We respect the rights, abilities and potential of people with Down syndrome."

The National Association FOR Down Syndrome (there's apparently no such thing as a Defeat Down Syndrome organization) notes that "Is is important to remember that while children and adults with Down syndrome experience developmental delays, they also have many talents and gifts and should be given the opportunity and encouragement to develop them."

A whole sociological study could be carried out on the differences in autism and DS discourse.

I also enjoyed your analysis of the ABA evidence. It's amazing how its efficacy is taken for granted, based on science that is quite poor methodologically.

Michelle Dawson said...

Hi Joseph,

The Canadian Down Syndrome Society got my attention in 2003 (before I ever had internet access), when they put a big (half page) advertisement in the Globe and Mail. There was a photo of a DS adult and a non-DS adult (both looking serious), and a very big headline saying, "Different genes, same value".

In the text of the ad, there were wishes for how the future would be. One of them was,

"Every baby born with Down syndrome, or any other difference, will be celebrated, not mourned."

Another was,

"People will look for a cure for intolerance, not Down syndrome."

I had quite a strong emotional reaction to seeing that beautiful advertisement (actually, I burst into tears). It was almost a shock, after dealing with autism societies and "autism advocates".

Camille said...

Michelle,

That advertisement sounds almost like science fiction when one thinks about how autism is constantly portrayed, in Canada and the US. I'd love to have seen it.

Ms. Clark said...

http://cdss.ca/en/store/CDSS%20resources/NDSAW%20Poster.pdf
pdf file of Canadian Down Syndrome Society poster
Thats a differnt version. It's 4 pretty blonde girls sitting at a table, they look like they are having a good time, it has the same slogan.

Do you suppose that the CDSS woud be willing to become the CDS&AS (Candian Down Syndrom and Autism Society)? I mean, they must know something about autism since some DS kids get an autism dx, too... you could sort of sail into the awareness of Canadians on some of the CDSS's intelligence and big heartedness.

Michelle Dawson said...

Hi Camille (and Ms Clark, too),

The people I communicated with at the CDSS spoke more accurately and respectfully about autistic people than any of our famous Canadian "autism advocates".

A CDSS person told me about a conference attended mostly by parents of DS children. The (big name) speaker pronounced about what a burden having a DS child is on families, and said that there is a 70% divorce rate in families with DS children, and so on. All the parents in the audience stood as one and protested against this denigration of their wanted, valuable, precious, wonderful children.

The CDSS put their "Different genes. Same value" signs up on bus shelters and billboards and so on. I'm sending you a pdf of the Globe and Mail ad I described (which stayed up on the CDSS website until late in 2004).

Anonymous said...

As a member fo the CDSS and a director of our local DS group I am a frequent visitor of the CDSS site. I wonder if folks know that CDSS hosts an article on ABA and DS...


Dave.

Michelle Dawson said...

Back in 2004, I spoke with the CDSS about the ABA article Dave refers to. They said they posted it at the (repeated) request of the author. They also made it clear that they post "personal stories" articles, such as the ABA article, which they do not necessarily agree with or endorse.

For Dave's endorsement of the ABA treatment described in this article, and for some of its contents as well as a link to it and so on--see this discussion.