Monday, October 30, 2006

Instant institutionalization

It's a basic tenet of Canada's autism advocates that autistics just naturally belong in institutions, and can only stay out of institutions by undergoing "medically necessary" ABA starting very early in life. From the autism advocate "fact sheet" again, the one disseminated to all of Canada's political leaders,

Without treatment, autism is a lifelong affliction that results in 90% of afflicted individuals placed in institutions and residential facilities, facing an unfulfilling and bleak existence for both the individual and family members.

This has clearly caught on. Here is Senator Jim Munson, speaking about autistics in the Senate on May 11, 2006:

However, honourable senators, we need to act. Nine out of 10 children who do not receive the treatment they need are institutionalized.

The 90% institutionalization rate (even higher rates have been promoted) is a reflection of the values and goals of autism advocates and has no foundation in the existing science. It's a complete fabrication that I wrote about from many different angles here. I would challenge autism advocates to give me one reference (a primary source from peer-reviewed science, please) that supports this fictional figure, in any era, much less the current one.

But what happens to autistic children who, as autism advocates demand, undergo "medically necessary" ABA from an early age? Michael Lewis is a Director of Autism Society Canada and the President of Autism Society British Columbia. He has been involved in ABA litigation and is one of our leading autism advocates and promoters of "medically necessary" ABA for all autistics. His son was diagnosed autistic at age 3. From a 2005 media story, here's a description of Mr Lewis' son:

Now in grade five in a regular classroom, the boy is a busy 11-year-old. He bikes, skis, swims and even plays clarinet in his school orchestra. He's also, "an active participant in family life," says Mr Lewis, who also serves as the President of the Autism Society of British Columbia. "Whatever we do, he's part of it."

Mr Lewis credits all of this to his son's ABA program. However...

But if his son's treatment was stopped, Mr Lewis is convinced the child would need to be institutionalized, possibly immediately. "If not now, then shortly," he says.

So Mr Lewis' son has undergone "medically necessary" ABA for many years, and has, according to his father, acquired a lot of impressive skills in this program. But the moment this ABA program stops, Mr Lewis promises to put his son in an institution. The impressive skills don't seem to belong to the boy, but to the "medically necessary" ABA program on which he is totally dependent, and without which the impressive skills instantly vanish and he is instantly doomed. He goes straight from a regular classroom to a bleak existence (as they say) in an institution, immediately or shortly after his ABA program stops.

This seems to cast some doubt on the effectiveness of "medically necessary" ABA, but Mr Lewis has no such doubts. Instead, there's that certainty that autistics belong not in families or society but in institutions. Even autistics who are considered to have succeeded in ABA programs, who stay in them for years, aren't safe. The only way to be safe is to be normal. Or else.

A strategy to deny autistic lives

It was an historic occasion. Andy Scott's motion to create a National Autism Strategy for Canada was debated in the House of Commons last Friday, October 27. A record of this debate is here. It's a tribute to "autism advocacy" that all of Canada's political parties are determined to legislate an autistic-free Canada, the sooner the better. In fact, you can see the success of "autism advocacy" all over this historic debate, something I may try to get back to later.

For now, I'll concentrate on one of the greatest triumphs of Canada's leading "autism advocates". Here's Liberal MP Ruby Dhalla, taking her turn in the House of Commons' historic autism debate:

"Autism spectrum disorder is currently reaching epidemic levels. If we look 10 years back, statistics show that almost one in every 10,000 children was diagnosed with autism. However, in 2006 the statistics are quite shocking. One in 166 children is diagnosed with autism."

In other words, according to Ms Dhalla, there are very few autistics over the age of 10 in Canada. In fact, there would be only ~3,000 in the entire country. There would be less than 500 autistic children between the ages of 10 and 20, and not much more than 2,500 autistic adults, in the entire country.

Ms Dhalla is also saying that there are only ~25,000 autistics, of any age, in the entire country. And this very low approximate figure only applies if the prevalence of autism leaped from 1/10,000 to 60/10,000 (that's 1/166) overnight, about ten years ago. If Ms Dhalla is proposing a more gradual increase over the past ten years, then this would mean considerably fewer than 25,000 autistics in Canada.

Ms Dhalla is correct about the current-day consensual prevalence figure for the spectrum. But where does her figure of 1/10,000 for 10 years ago come from?

Eric Fombonne's Montreal data give an across-spectrum prevalence of 67/10,000 for children born 10 years ago, in 1996 (Fombonne et al. 2006). The two Baird et al. (2000, 2006) studies involved children born in 1990-1991, or at least 15 years ago; prevalence across the spectrum ranged from ~60/10,000 to ~100/10,000 (with the 2nd, very high figure being due to the ascertainment and diagnosis of high levels of secondary PDD-NOS). Chakrabarti & Fombonne (2001, 2005) found a high, stable prevalence across the spectrum of ~60/10,000 in children born between 1992 and 1998--that is, between 14 and 8 years ago. Honda et al. (1996) found a prevalence of the specific diagnosis of autism of ~21/10,000 in children born in 1988, 18 years ago; working from the cumulative incidence figure for that birth year (Honda et al., 2005), it would appear (I would stand to be corrected on this) that the across-spectrum prevalence would fall within the 60/10,000 range also. And so on. Ms Dhalla's 1/10,000 figure doesn't appear to come from the science, any more than her declaration of a "quite shocking" autism epidemic.

It seems more than likely that Ms Dhalla got her data from this "fact sheet" produced by two of Canada's leading "autism advocates", Brenda Deskin and Andrew Kavchak. This "fact sheet" has been widely distributed among Canada's political leaders, and is posted and promoted by Canada's most influential and politically active FEAT group. Ms Dhalla's contribution to the historic autism debate shows how seriously this "fact sheet" has been taken.

Canada has brand new 2006 census figures, so it's easy to compare the science (a high, stable rate of autism) to Ms Dhalla's "quite shocking" epidemic, the epidemic forcefully promoted by our most important "autism advocates":

The science says there are ~197,000 autistics in Canada in 2006. Ms Dhalla and our "autism advocates" say there are ~25,000 or less.

The science says there are ~26,000 autistic children from ages 10-19. Ms Dhalla and our "autism advocates" say there are less than 500.

The science says there are ~150,000 autistic adults in Canada. Ms Dhalla and our "autism advocates" say there are not much more than 2,500.

One of the major accomplishments of "autism advocacy" in Canada has been the denial of autistic lives. By anti-scientifically promoting an "epidemic" of autism, those who claim to represent all autistics in Canada are telling our leaders that the vast majority of autistics in Canada don't even exist. We aren't here and we were never here and we will never be here: we have no past, present, or future. Tens of thousands of autistic lives have been denied--stamped out, abolished, gone. "Autism advocates" are lobbying against assistance or accommodation for most autistics in Canada, by insisting that our lives are non-existent.

This erasing of autistic lives has clearly caught on among Canada's political leaders. These leaders can use the anti-scientific views of autism pushed by "autism advocates" to deny the obligation of governments to accommodate, assist, or even acknowledge the existence of most autistics in Canada.

Ms Dhalla's goal is an autistic-free Canada: she states directly that autism should be prevented. While waiting for this goal to be legislated and achieved, she has done an outstanding job of using anti-science to deny the lives of most autistic Canadians. That noise you hear is the sound of our celebrated "autism advocates", applauding as loudly as they can.


Baird, G., Charman, T., Baron-Cohen, S., Cox, A., Swettenham, J., Wheelwright, S., & Drew, A. (2000). A screening instrument for autism at 18 months of age: a 6-year follow-up study. Journal of the American Academy of Child and Adolescent Psychiatry, 39, 694-702.

Baird, G., Simonoff, E., Pickles, A., Chandler, S., Loucas, T., Meldrum, D., & Charman, T. (2006). Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP). Lancet, 368, 210-215.

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

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

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.

Honda, H., Shimizu, Y., Misumi, K., Niimi, M., & Ohashi, Y. (1996). Cumulative incidence and prevalence of childhood autism in Japan. British Journal of Psychiatry, 169, 228-35.

Honda, H., Shimizu, Y. & Rutter, M. (2005). No effect of MMR withdrawal on the incidence of autism: a total population study. Journal of Child Psychology and Psychiatry, 46, 572-79.

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.


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.


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


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.)

Tony Clement's Canada does not include autistics

This is a letter I sent to Canada's Health Minister, Tony Clement, on October 16, 2006. A previous health minister once responded to a letter of mine by sending me his pity, as well as concerns about the plight of my poor family . So my expectations are low.


I've read your Autism Awareness Month message.

You call autism a "disease" and praise all the dedicated people involved in "the fight against autism spectrum disorder". This sends a powerful message to all Canadians, that autism is a very bad thing that ideally Canada should be free of. This message goes out to schools, communities and employers, all of whom are informed that autism is an unwanted disease to fight against. Employers, for example, would see a potential employee who is autistic as sick or diseased, rather than as having an atypical pattern of strengths and weaknesses which is remarkably and productively complementary to the typical pattern.

Canada has always had autistic people. Indeed, the figure of 200,000 autistics in Canada that you provide assumes the same consensual (in the peer-reviewed science) prevalence of 60/10,000 across all age cohorts--going back generations. Now you and your government are saying that autistic neurology is a disease to fight against, and that ideally, the contributions to Canadian society made by autistic people over the generations will stop.

Mr Clement, your Canada seems to have room for only one kind of neurology, and only one pattern of strengths and weaknesses, and only one acceptable range of traits and abilities. You've placed autistics outside of these acceptable parameters, by calling us diseased, and by praising those who fight against autistic differences in an effort to remove them from society altogether.

You have nothing good to say about those who are working to ensure that autistics receive the assistance, acceptance, and respect we need in order to succeed in society as autistic people. In short, you and your government seem to want a society where only non-autistic traits and abilities are valued and "healthy", while autistic traits and abilities are considered unwanted--something to fight against--and diseased. I would like to know why.

Thank you for your time.


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

What's autism anyway?

This is something I wrote that was posted on jypsy and Alex's iRunman blog:

Autism is a neurological difference classified as a developmental disability. Autistic people have atypical behaviours in three areas: social interaction, communication, and restricted interests or repetitive behaviours. Autistics are different at the most basic level available: how we experience the world, and how we learn from it. Autism presents with measurable differences in perception, attention, memory, intelligence, etc. The autistic order and progress of development is different from the typical version as is autistic brain structure, allocation, and function. Autism presents strengths not available to the typical population, but the different pattern of strengths and weaknesses characterizing autism results in many difficulties as atypical needs and adaptive but atypical autistic behaviours are at odds with what is considered or expected as "normal".

Autism isn't a disease, or a bunch of behaviours, any more than femaleness is. Autism involves neurological differences, which are basic and comprehensive. Autistic neurology is no more or less valid than non-autistic neurology: both autistics and non-autistics are able to develop, learn, progress, and achieve things, but may do so in different ways and may require different kinds of help along the way. Progress is part of the natural course of development in autistics, as it is in non-autistics, but development in autism may not proceed in the same order as is considered normal for non-autistics. Autistics may, e.g., seem advanced in some areas and delayed in others. Seen in perspective, this means that in comparison with autistics, non-autistics are likely to be advanced in some areas and delayed in others. Non-autistics may need a great deal of assistance in learning things that autistics learn easily, and the reverse may also be true. Seeing as we don't declare non-autistics to be "succeeding in treatment" or "less severely non-autistic" or "recovered" when they develop and learn, it should be clear that describing autistics in these kinds of terms is misleading and prejudicial.

Autistics are alert and aware of what is happening around us, even though we may not be able to show this or respond in expected, typical ways. Autistics also may not communicate in typical ways, and in some situations, will find it difficult to communicate at all. However, this does not reflect a fundamental inability or unwillingness to communicate. Autistics want to communicate, and can do so when provided with a context in which communication is both possible and responded to. This is also true of non-autistics, but non-autistics are much more likely to be provided with contexts in which they can communicate successfully.

Dividing autism into "severe" and "mild", or in similar ways, is misleading and harmful. Autistics may differ in the extent to which autistic traits are or are not obvious, and this may vary in individual autistics from hour to hour, day to day, and year to year, depending on many factors, including on what kind of context an autistic lives in. The extent to which autistic traits are or are not evident in any individual autistic is unrelated to our intelligence and our outcomes as adults. However, societal prejudices against autistic traits may prevent autistics whose traits are more obvious from being considered able to learn, to communicate, to make decisions about our lives, to walk around freely, to be employed, etc.

What crisis?

It's not hard to create a crisis. You can start by spreading a lot of false information about an identifiable group of people. You could, e.g., call them diseased and tell everyone that because of their disease, these people can't communicate, so no one should listen to them. Then you're free to spread fear and dread of these people, including by claiming that their numbers are exploding. This is great way to create a scary, urgent crisis demanding attention and money in the face of impending doom (for families, for society, for the economy, for the world as we know it, etc).

This kind of crisis creation has been the primary activity of "autism advocacy", which is the widespread effort to make the world as free of autism--of autistic people--as possible.

Two Octobers in a row, Autism Society Canada has declared a "growing autism crisis". This is their Canadian Autism Awareness Month campaign to make sure all Canadians know that autism is scary. Autism is so scary, according to ASC, that it must become a reportable disease--a status reserved for infectious and deadly diseases in Canada. But as ASC themselves have noted two years running, there hasn't been any increase in the prevalence of autism going back generations. ASC gives the figure of ~200,000 autistics in Canada. This means a steady prevalence of ~60/10,000 which has not changed, going back at least a full lifespan. There is no higher prevalence of autism now than there was 30 or 70 years ago, according to the figures in ASC's recent press releases. Whatever is causing ASC's scary and growing crisis, it isn't autism itself.

I'm possibly the world's slowest and most laborious writer, but when I can, I'll be writing here about the science and ethics of autism advocacy, and also about its consequences. If we're having an autism crisis, as autism advocates in Canada and elsewhere insist, what exactly is this crisis anyway, and who caused it?