what I do (pages)

Saturday, November 03, 2007

Erin Anderssen does not take autism seriously

The following is what I will probably send to Globe and Mail reporter Erin Anderssen, if I can get my email to work (yes, you can blame my computer for my long lapse in blogging)--about this Globe and Mail article.


Ms Anderssen,

With respect to "Autistics: We don't want a cure" from the Globe and Mail (November 3, 2007):

When I spoke with you, I stated directly that I should not be falsely described as an "activist." Once I understood what the word "activist" meant (this did take a while, which is typical for me), I knew I wasn't an activist--something I've known for some years now. Some people have called me an activist, but some people have also called me a fraud, and neither is accurate. At the time, you agreed that you would describe me only as a researcher. Yet in your article, you dishonestly chose to falsely describe me as an activist.

My correspondence with you also shows that I had not understood what kind of article you were planning to write. But once I realized you were writing an article about a cultural phenomenon (this was not what I had understood about your article; you had been referred to me by a scientist), I stated, in writing, that I should not be in this kind of article--which tends to add more irrationality to the already irrational public discourse about autism. But you put me in your cultural phenomenon article anyway.

And while I am in your article, the factual and verifiable information I gave you, which is typical of the information many autistics publicly provide, was overwhelmingly ignored. Instead, your article depends on caricatured and harmful stereotypes of autism and autistic people.

All my statements to you about neurodiversity (a subject far beyond the scope of autism, and about which I've written virtually nothing) included the information that neurodiversity is part of the general idea that disabled people should have human rights. I gave numerous examples from other disability areas, including blindness, Down syndrome and the general area of developmental disability.

I provided you with examples of legal cases where the demands of some parents of disabled children and the interests of disabled people were incompatible. Developmentally disabled people--who would be written off as "low-functioning" by autism advocates like Harold Doherty--have used the courts to oppose those trying to deny their human and legal rights. As I wrote to you, the work of groups like People First, which I admire enormously, exemplifies what neurodiversity means: that disabled people are fully human and should have human rights, regardless of how hard some groups and individuals work to write us off.

Instead of acknowledging this view, which is commonplace among autistics, you report only the false distinction, that autism is a difference but not a disability, as if disability is necessarily something wrong and inferior. This is the opposite of what I communicated to you, and the opposite of what neurodiversity represents.

But you were only getting started: then you go to town presenting extreme and offensive views--including that autistics are superior beings with "superpowers"-- held by some autistics. These unfounded and offensive views are, as much as possible, publicly criticized and opposed by many other autistics whenever they are expressed--an essential bit of balance that you totally failed to report.

You also failed to report what should be considered extreme views on the part of autism advocates, but which are in fact mainstream views supported by major autism organizations and political parties. For example, I provided you with FEAT's statement--in the Globe and Mail--that autistics who have not received unlimited ABA-based interventions starting early in life--that is, most autistics in Canada--must be institutionalized, abused (kept in restraints), and mutilated (our teeth pulled). FEAT is Canada's most powerful and influential autism advocacy group. Their extreme public statements have not resulted in any opposition or criticism from autism advocates, and have indeed been greeted with their applause. And FEAT has full support from two of Canada's major national political parties: the Liberals and NDP, whose only objection has been to any suggestion that FEAT's positions are extreme.

I also provided you with my one-sentence position: that autistics are fully human and should have human rights; and that autistics deserve the recognized standards of science and ethics that automatically protect and benefit nonautistics--such as yourself--and without which you could not proceed safely in society, much less have a good outcome.

This is the position that Mr Doherty so vehemently opposes.

I communicated to you the important question of why autism advocates--powerful and influential leaders like FEAT and Mr Doherty--have been unwilling or unable to make their demands for services--whatever those services may be--accurately (including with respect to the existing science), ethically, and respectfully.

I communicated to you the problem of autism advocacy leaders like FEAT and Mr Doherty writing off autistic people, denying autistics basic human rights, denying autistics recognized standards of science and ethics, and successfully demanding that laws that protect themselves should not protect us. The actions of Mr Doherty and others similar, as I wrote to you, make daily life difficult and dangerous for many autistic people--just as the denial of basic rights and standards, and of the protection of the law, would make daily life difficult and dangerous for anyone. Then Mr Doherty et al. point at our difficult and poor outcomes, declare us a crisis and drain on society, and demand that autistics be eradicated.

As I wrote in response to Mr Doherty's comments on my blog about self-injury and institutionalization, he would be the first to write me off if he saw me in difficulty. He would be the first to use me as an example of why autism is a horrific disease that must be eradicated.

Indeed, as I explained to you, I have experienced being written off via the values Mr Doherty and other powerful autism advocates embody--and impose on all autistics. No doubt I'll be written off this way again. I'm well placed to understand why autistics often suffer and have poor outcomes--and will continue to so long as Mr Doherty and others similar persist in dehumanizing us, in spreading false, anti-scientific information about us, in spreading the word that we're dangerous and violent and/or frauds and criminals, in denying us rights, standards, and the protection of the law--and in writing us off.

I provided a short summary of my views about neurodiversity when I first spoke with you. I don't know much about neurodiversity, but it's easy when there's organizations like the Canadian Down Syndrome Society, which disseminates information like this:

"Down syndrome is not a disease, disorder, defect or medical condition. It is inappropriate and offensive to refer to people with Down syndrome as "afflicted with" or "suffering from" it. Down syndrome itself does not require either treatment or prevention."
I also told you that in a major advertising campaign (including a large ad in the Globe and Mail), the CDSS expressed their ideal that in the future, intolerance will be cured, not DS. I could have added that the CDSS utterly fails to silence or deny the worth of people with DS based on what kind of DS they have or what their apparent abilities are. I did tell you directly that only autism advocates would leap to the irrational presumption that the CDSS is really saying that DS people (unlike all other human beings) do not need assistance or services, and that DS people (unlike all other human beings) never suffer at all and never face any challenges or difficulties.

But large portions of your article are founded on this kind of irrational presumption, which would be instantly spotted as both absurd and dangerous in any other disability area.

I have no idea where this bit of your article

"They say autism should be seen as part of the “neurodiversity” needed to evolve smarter human beings
and this one

"In blog discussions, autistics sometimes even speak of themselves as a “superior species”
and many others similar ("superpowers," etc.) came from, as they (and many positions attributed to "autistics" in your article) were not sourced. But as I noted above, a lot of autistics, myself included, consider that statements like these--and many of the views ascribed to autistics in your article--range from unfounded to ludicrous, extreme, offensive, dangerous--and/or pathetic. Etc. Many of us have publicly written a lot in criticism of and opposition to these views.

Yes, you are free to choose to report claims of unfounded, offensive, etc., views held by some autistic people--from whatever sources you wish. But reporting these views as though they were representative of "neurodiversity" or of autistics is dishonest and unethical. It is in the same neighbourhood as taking David Ahanakew's (or James Watson's) extreme and offensive statements, and reporting them, without naming their source, as being representative of the views of aboriginal people (or white people). And then seriously reporting the views of non-aboriginals (or non-whites) about these extreme and offensive positions held by aboriginal people (or white people).

The Globe and Mail should print a correction, clarification and apology. First, a correction--of the false information in your article that I'm an activist, which you dishonestly reported. Second, a clarification--to make it clear that many of the views you have ascribed to "autistics" or associated with "neurodiversity" are regarded by many autistics, myself included, as ranging from unfounded to offensive and dangerous, contrary to the strong and misleading impression given throughout much of your article. Third, an apology--for the problems caused by the false information printed in your article, as well as for recklessly and knowingly (you did not lack accurate, verfiable information) promoting harmful stereotypes of autistic people as a group.

I realize this request is ridiculous. It belongs in an as-yet non-existent world, where autism and autistics are taken seriously. As I've written before, autism advocates trivialize autism and in so doing, harm autistic people. Autism advocates, who claim to know what's best for all autistics, do not take autism seriously and, following their powerful and influential leadership, nor has the Globe and Mail.

Regards,

Michelle Dawson
Autism Specialized Clinic
Rivière-des-Prairies Hospital
University of Montréal

Friday, August 03, 2007

Autism and ABA in the UK: A controlled trial

The ABA non-randomized controlled trial presented by Patricia Howlin at the International Meeting for Autism Research this year has recently been made available online. You can find the abstract of this in press paper here [edit: If you follow the link, you'll see that this paper has now been published]:

Magiati, I., Charman, T., & Howlin, P. (in press). A two-year prospective follow-up study of community-based early intensive behavioural intervention and specialist nursery provision for children with autism spectrum disorders. Journal of Child Psychology and Psychiatry.
As I wrote earlier, Dr Howlin's study is a prospective, community-based study comparing the outcomes of 28 autistic children receiving home-based intensive ABA-based interventions (the ABA group) with a control group of 16 autistic children receiving "autism specific nursery provision" (the nursery group). The interventions are described as being "typical" of ABA and nursery services available in the UK. The children were between 23 and 54 months and had a very wide range of IQs (16 to 138) at intake. They were followed up after ~26 months.

The ABA group received intensive 1:1 Lovaas-type ABA, with two children receiving additional Verbal Behaviour services. For 20 ABA group children, ABA services were provided by "recognised ABA organisations in the UK, Norway or USA", while the remaining 8 children had independent providers. The nursery group was distributed across 10 different schools. They received what would be called "eclectic" intervention, where the "most common named practices" included TEACCH, PECS (an ABA-based approach), Makaton, and SPELL (from a 2001 guide published by the UK National Autistic Society), as well as "other developmental and behavioural teaching methods".

And--as reported in the abstract--after a bit more than 2 years, there were no significant differences to report between the ABA and nursery groups in a multitude of outcome measures. On only one measure was a difference approaching significance found in favour of the ABA group (Vineland Daily Living Skills, where p=.06). In contrast, there were major individual differences among the children in progress made, regardless of which group the children were in.

As happens in non-randomized controlled trials, the two groups were not matched on many variables at intake. The authors accounted for only one of these unmatched variables--a significant difference in mean intake IQ which favoured the ABA group (83 for the ABA group; 65 for the nursery group). Other significant differences at intake (e.g., Vineland socialization, Vineland composite, parental education) favoured the ABA group and were not accounted for, while other unaccounted for differences favouring the ABA group were just short of being significant (e.g., the ABA group was younger at intake). None of the between-group differences at intake favoured the nursery group.

The authors also made no attempt to account for gender. The nursery group had a higher percentage (33%) of females than the ABA group (4%). In my view (and apparently, in the authors' view), this isn't a major issue and if anything--according to the lore that autistic females are at a disadvantage--this difference would again favour the ABA group.

The ABA group also had the advantage of receiving a significantly more intensive intervention than the nursery group, both at the outset of treatment and at follow-up, with the ABA group at ~33hrs/wk (range 18-40) and the nursery group at ~26hrs/wk (range 15-30). Within each group, intensity of intervention did not change from the outset to follow-up. That is, the children's need for services did not decrease over the course of about two years. The nursery group received little in the way of 1:1 intervention (6hrs/wk average, compared to the ABA group, where the full ~33hrs/wk was 1:1).

Because they received a more intensive intervention, the ABA group also received a significantly higher total number of intervention hours than did the nursery group--an average of 3415 hours versus 2266 hours per child. This is a difference of 1149 hours favouring the ABA group.

Using the average intensity of intervention for the ABA group, the ABA group received an equivalent of 35 weeks more in the way of intervention time than the nursery group children. Using the average intensity of intervention received by the nursery group, the nursery group received an equivalent of 44 weeks less in the way of intervention time than the ABA group children. That is, for the amount of intervention to be equivalent in both groups, the nursery group children would have had to receive an additional 44 weeks of intervention (at their average intensity of intervention).

On the other hand, this study found no relationship whatsoever between intensity of intervention and any outcome measure. This is keeping in mind that the range of intensity in the ABA group was 18-40hrs/wk. In my IMFAR poster this year, I mentioned the failure of the ABA literature to relate higher intensity of ABA-based interventions with better outcomes, and in Dr Howlin's study, that failure continues.

Another factor that had no effect on outcomes was age at intake. Whether the children were younger or older at intake, across the range from 23 to 54 months, made no difference to how well they did. The popular if not ubiquitous contention that, when it comes to autism interventions, "earlier is better" has failed--again--to be supported by evidence from a controlled trial (for a previous failure, right up to intake at age 7, see Eikeseth et al., 2002, 2007).

And regardless of the ABA group starting with an average IQ well within the "high-functioning" range (indeed, the intake IQ here for the ABA group is the same as the follow-up IQ in Lovaas, 1987), after ~2 years of intensive ABA, all children in this group were still receiving ABA services and none was in a mainstream school without 1:1 assistance. This is also regardless that almost one-third of the ABA group did not have the specific diagnosis of autism at intake, instead being assigned a subthreshold "ASD" diagnosis.

On average, neither group did well. They both made progress in age-equivalent scores but, as the abstract reports, standard scores changed little. Individuals either did well or did poorly, and this was unrelated to which kind of intervention they received, the intensity of intervention, or the age at which intervention began. This is similar to what was found in a recent Canadian observational study (Eaves & Ho, 2004).

Dr Howlin's study, like all studies, has weaknesses and limitations (and of course I want a lot more information about practically everything), some of which are addressed by the authors. I find it ironic that the authors argue for autism-specialized services by citing Cohen et al. (2006). While it is difficult to compare across studies, it could be argued that the control group in Cohen et al. (2006), which received completely inadequate services that no one should recommend (generic segregated special education of low intensity), fared better by the usual standards than both groups--the ABA group and the nursery group--receiving autism-specialized services in Dr Howlin's study. Dr Howlin and colleagues also fail to point out that when unmatched intake variables are accounted for in Cohen et al. (2006), the few significant differences between groups (ABA vs generic segregated special education) in all but one outcome measure (classroom placement) disappear.

Dr Howlin and colleagues conclude that:

Our data support the growing consensus that no one intervention for children with ASD is universally superior to all others (NIASA, 2003).
My own conclusion is one I've arrived at before: after more than 60 years of autism research, encompassing the colossal existing autism intervention literature, researchers still cannot scientifically claim to know how to help autistic individuals (Volkmar et al., 2004). The best adult outcomes reported in the autism literature continue to belong to individuals who grew up before the current era of early interventions and who as children met the narrowest, strictest autism diagnostic criteria ever devised (Dawson et al., in press).

I'm prepared to agree with Dr Howlin that autism-specific services are important. But even the evidence Dr Howlin and colleagues drum up in support of these services glaringly reveals how poorly autism research has served the interests of autistics. Even if you leave out ethical concerns that would be paramount with any non-autistic population, the major currently-popularized and -marketed autism educational interventions (as opposed to non-popularized non-marketed science-based approaches; see Aldred et al., 2004; Gernsbacher, 2006) leave little to choose from. Autistics deserve a whole lot better.


References:

Aldred, C., Green, J., & Adams, C. (2004). A new social communication intervention for children with autism: pilot randomised controlled treatment study suggesting effectiveness. Journal of Child Psychology and Psychiatry, 45, 1420-1430.

Cohen, H., Amerine-Dickens, M.S., & Smith, T. (2006). Early Intensive Behavioral Treatment: Replication of the UCLA model in a community setting. Journal of Developmental and Behavioral Pediatrics, 27 (S2), 145–155.

Dawson, M., Mottron, L., & Gernsbacher, M. A. (in press). Learning in autism. In J. H. Byrne (Series Ed.) & H. Roediger (Vol. Ed.), Learning and memory: A comprehensive reference: Cognitive psychology. New York: Elsevier.

Eaves, L.C., & 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.

Eikeseth, S., Smith, T., Jahr, E., & Eldevik, S. (2002). Intensive behavioral treatment at school for 4- to 7-year-old children with autism: A one-year comparison controlled study. Behavior Modification, 26, 49–68.

Eikeseth, S., Smith, T., Jahr, E., & Eldevik, S. (2007). Outcome for children with autism who began intensive behavioral treatment between ages 4 and 7: A comparison controlled study. Behavior Modification, 31, 264-278.

Gernsbacher, M.A. (2006). Toward a behavior of reciprocity. Journal of Developmental Processes, 1, 139-152.

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.

Volkmar, F.R., Lord, C., Bailey, A., Schultz, R.T., & Klin, A. (2004). Autism and pervasive developmental disorders. Journal of Child Psychology and Psychiatry, 45, 135-170.

Wednesday, July 18, 2007

About that surge in autism

So are autistics really going to take over the known world? We know there's been a staggering surge in irresponsible autism-related journalism. It's even hit the BMJ.

There's overwhelming evidence that 1 in 58 is not a genuine autism prevalence figure, but the product of shoddy and dishonest reporting (see Ben Goldacre here, looks like he's going to be in the BMJ on Friday, and the Times here). Nothing like irresponsible reporting to waste heaps of time and effort that could otherwise be spent in applying accurate information to help autistic people.

But what about that surge in autism? Is there one? This is not a popular position in our era of autism advocacy--but when in doubt, consult with the peer-reviewed data.

Here are 7 recently reported autism prevalence figures for children of various ages in the US and UK. All figures are for all autistic spectrum diagnoses combined. I've rounded them off to the nearest 5--autism prevalence figures don't come with pin-point precision. Here goes:

1 in 175
1 in 170
1 in 160
1 in 150
[1 in 150]
[1 in 150]
1 in 85
1 in 58

Wow, that looks like a big autism surge, even without that last figure. And those low/no standards for autistics so successfully pushed by autism advocates would demand that the 1 in 58 be tacked on at the end (there it is, in red, from shame). Now it looks like autism is surging even more.

I've also put two of the figures in square parentheses. That's because they're not quite like the other non-red figures. I'll get back to this.

Maybe we should look at when these figures were published in peer-reviewed journals, just in case it's informative.

1 in 175 (2000)*
1 in 160 (2001)**
1 in 150 (2001)
1 in 170 (2005)**
1 in 85 (2006)*
[1 in 150 (2007)]***
[1 in 150 (2007)]***
1 in 58 (not published)

That looks slightly less persuasive, but we could probably still argue that autism is surging, all the more so if we adopt autism advocacy standards for autistics and include the red-faced 1 in 58.

Or we could subject these studies to a bit of scrutiny. With two (non-red) exceptions, these studies meet two criteria: (1) they used DSM-IV or ICD-10 criteria for autism and the other autistic spectrum diagnoses; and (2) at least some of the counted children were directly assessed by the researchers using one or the other or both of the current standardized, quantified gold-standard autism diagnostic instruments.

The two exceptions are in square parentheses. They are US prevalence studies that don't meet my second criterion. They don't involve direct assessment of autistic children, instead relying on less reliable information from educational and/or medical records. But these two are very popular studies. I've included them (in parentheses) because their 1 in 150 has, since these studies were widely publicized early this year, often been reported as the prevalence of autism.

I've also paired up most of the studies. The ones with one asterisk (*) belong with each other. This pair of studies was done in the exact same geographic area. The ones with two asterisks (**) also belong with each other, and also were done in the same geographic area. And the ones with three asterisks (***) belong with each other too, and have some overlap in geographic area.

Regardless of geographic area, and keeping in mind the two criteria for studies I provided above, the pairs are paired in two different ways: studies using the same methodology with different birth year cohorts; and studies using different methodology with the same birth year cohort.

If autism is indeed surging, studies using the same methodology with different birth year cohorts should show autism prevalence increasing over time. And studies of the same birth year cohort using the same diagnostic criteria (DSM-IV or ICD-10) should show the same autism prevalence. If not, then the extent to which differences in methodology contribute to reported differences in prevalence would have to be contemplated--and this might inconvenience the "surging autism" contingent.

So if there really is an autism surge, we should find that the (*) pair represents two studies with the same methodology but different birth year cohorts, where the higher figure (1 in 85) is found in a later birth year cohort than the much lower figure (1 in 175). And we should find that the other two pairings, where the figures are the same (the *** pair, with 1 in 150) or nearly the same (the ** pair, with 1 in 160 and 1 in 170; this is not a significant difference), are studies of the same birth year cohorts done with whatever methodology, provided the same diagnostic criteria are used.

Well, it doesn't quite work out that way. In fact, it's the opposite. That (*) pair represents the same birth year cohort, different methodology. And those other pairs (*** and **) represent different birth year cohorts, same methodology.

That's keeping in mind that apart from the square parentheses (***) pair, and apart from the beet red 1 in 58, all the other studies meet both my own criteria--they use the same current diagnostic criteria, and they involve at least some direct assessment of children with one or the other or both of the current gold-standard diagnostic instruments.

How about ordering all the studies according to the years in which the children being studied were actually born. If that autism surge is autism reality, then we should see that surge, uh, surging right along as birth year cohorts become more recent. It's about time I named the studies, and I've kept the asterisks, just in case anyone's keeping track. Here goes again:

1 in 150 (1988-1995; Bertrand et al., 2001)
1 in 175 (1990-1991; Baird et al., 2000)*
1 in 85 (1990-1991; Baird et al., 2006)*
[1 in 150 (1992; ADDMN, 2007)]***
1 in 160 (1992-1995; Chakrabarti & Fombonne, 2001)**
[1 in 150 (1994; ADDMN, 2007]***
1 in 58 (1993-1997; not published)
1 in 170 (1996-1998; Chakrabarti & Fombonne, 2005)**

That didn't work out too well either. Now we don't have a surge at all, just a bunch of findings--spanning a decade of birth years--that are very close to each other, and (leaving out the crimson 1 in 58) one figure that looks like an outlier. But we can't attribute the 1 in 85 (it is actually 116.1/10,000) in Baird et al. (2006), a figure often rounded off to 1 in 100, to a surge in autism, because much lower prevalence figures have been found in several later birth year cohorts. Never mind that a much lower prevalence figure was found in the same cohort in Baird et al. (2000).

Indeed, what the two Baird et al. studies demonstrate is the dramatic effect methodology can have on reported autism prevalence within the same cohort--even when the same diagnostic criteria are used, even when there is an overlap in the standardized diagnostic instruments used (both Baird studies used the ADI-R), and even when the studies are conducted by an overlapping group of researchers. The two studies differ primarily in that the later study also used the ADOS, two of the diagnosing clinicians changed, and the method of case finding was altered. That was enough to double the reported prevalence within the same cohort.

In contrast, the two Chakrabarti and Fombonne studies show that applying the same methodology to different birth year cohorts results in the same autism prevalence. No surge in sight. The two in-parentheses studies, which are the now-famous CDC prevalence studies, show the same thing but with weaker methodology over a shorter timespan.

Autism advocates are free to seek that recent surge in autism--that catastrophic epidemic--in anecdotes, in education numbers or the CDDS, in sensationalist headlines and so on. This is all in keeping with the rotten standards of science and ethics they've imposed on autistics, and with their own steadfast resistance against verifiable information. But on the off-chance anyone's interested in the published, peer-reviewed data, I thought I'd go fetch some. If anyone finds any factual errors in the information I've presented, I'd greatly appreciate knowing. Accurate information is always good for autistics.

(Edit: Ben Goldacre's now had his say in the BMJ. You can find his column here.)


References:

Autism and Developmental Disabilities Monitoring Network Surveillance Year 2000 Principal Investigators; Centers for Disease Control and Prevention. (2007). Prevalence of autism spectrum disorders--autism and developmental disabilities monitoring network, six sites, United States, 2000. MMWR Surveillance Summaries, 56, 1-11.

Autism and Developmental Disabilities Monitoring Network Surveillance Year 2002 Principal Investigators; Centers for Disease Control and Prevention. (2007). Prevalence of autism spectrum disorders--autism and developmental disabilities monitoring network, 14 sites, United States, 2002. MMWR Surveillance summaries, 56, 12-28.

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.

Bertrand, J., Mars, A., Boyle, C., Bove, F., Yeargin-Allsopp, M., & Decoufle P. (2001). Prevalence of autism in a United States population: the Brick Township, New Jersey, investigation. Pediatrics, 108, 1155-61.

Chakrabarti, S., & Fombonne, E. (2001). Pervasive developmental disorders in preschool children. JAMA, 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.

Thursday, July 05, 2007

Learning in autism

Dawson, M., Mottron, L., & Gernsbacher, M. A. (in press). Learning in autism. In J. H. Byrne (Series Ed.) & H. Roediger (Vol. Ed.), Learning and memory: A comprehensive reference: Cognitive psychology. New York: Elsevier.

This book chapter, mostly written circa the fall of 2006, was accepted for publication recently. It's more like an encyclopedia entry, where there are four volumes to the (very ambitious, and expensive) encyclopedia, encompassing some 159 articles and more than 3,000 pages. So far as I know, this encyclopedia is scheduled to be published in early 2008. It should also be published online, making individual articles available.

Our piece of the encyclopedia was limited to ~6,000 words, which wasn't nearly enough, particularly given that we had to write for a general readership (which may or may not have any knowledge of autism).

Researching and writing this review article was a both an enormous challenge and a fantastic opportunity. Whatever its limitations (I never have any difficulty spotting limitations in my work or work I'm involved in), I hope our short overview of a neglected area of research will encourage a more systematic and rigorous study of learning in autism, of how and why autistics learn well and learn poorly.

Wednesday, July 04, 2007

Verbatim: John Staddon's error

John Staddon, PhD (James B Duke Professor of Psychological and Brain Sciences and Professor of Biology and Neurobiology at Duke University), has a lot of published work in the area of the experimental analysis of behaviour (none of which I'm familiar with). As with every other Verbatim, providing a quote from Dr Staddon does not mean that I generally agree with his views--though in the case of this particular quote, it seems we both made the same error.

This shortest Verbatim in the short history of Verbatim is from a 2004 commentary Dr Staddon wrote in response to a review of one of his books:

I thought behavior analysis was science, not religion, but maybe I was wrong.


Reference:

Staddon, J.E.R. (2004). The old behaviorism: A response to William Baum's review of The New Behaviorism. Journal of the Experimental Analysis of Behavior, 82, 79-83.

Friday, June 15, 2007

A tale of two ABA studies

Back from the far-away land of deadlines with some very-belated information from IMFAR (International Meeting for Autism Research) 2007, and some thoughts about researching autism interventions.

I saw two presentations involving data from early ABA-based interventions at IMFAR this year. Both studies are community-based.

A Canadian study was presented by Isabel Smith of Dalhousie (the abstract is here). Her ongoing study involves children in a government-funded ABA program in Nova Scotia. She was presenting data after one year for 27 autistic children with an average age just over 4yrs at intake, 6 of whom are described as "non-verbal".

Dr Smith reported improvements in various measures, 6 and 12 months after the children started in their ABA program. Does this mean the chosen ABA program is "effective"?

It looks like we'll never find out, because there is no intention of ever having a control group. Dr Smith cited ethical considerations as to why a control group was unthinkable.

That's a familiar argument: ABA-based interventions are known to be effective, so denying any autistic children the benefit of an ABA program is unethical. This is a subject in itself which I hope to get back to.

In this case, there's also the greater context: Dr Smith's study is an offshoot of the Nova Scotia government's decision to provide ABA-based interventions to autistic children in NS. First, the decision was made to fund the intervention (that is, provide a public program). Then the idea was to study it, once it was in place, to see if it worked.

So assigning children to a group that would be denied what had already become a government-provided program was out of the question. So far as I can tell, the utility of a non-randomized controlled trial (allowing for parents who might choose a different program for their autistic children) was discarded. Ergo--the effectiveness of this government-funded ABA program will be determined solely by an uncontrolled trial. This is now a CIHR-funded study.

And it all sounds like great news for autism advocates. ABA programs are indeed considered so effective--by governments, researchers, the CIHR, etc.--that controlled trials comparing the effectiveness of an ABA program to another program are rejected as unethical.

But the ABA program being funded by the NS government, and being studied in Dr Smith's uncontrolled trial, is a non-intensive, 15hrs/wk PRT (Pivotal Response Training) program. While PRT has some scientific support, there has never been a major controlled trial of PRT as a comprehensive autism intervention. So there has never been a major controlled trial of PRT as it is being studied and funded in NS. Regardless, non-intensive PRT is being assumed to be effective as a comprehensive intervention, in the absence of any evidence for this, such that any experimental design that risks being informative about its effectiveness is considered unethical.

Dr Smith's study is a ringing endorsement of the low/no standards of science and ethics that autism advocates have vigorously and successfully demanded for autistics. It is perfect evidence of why, in the presence of a massive bulk of autism intervention research, researchers still cannot scientifically claim to know how to help autistic individuals (Volkmar et al., 2004).

The other community-based ABA study was from the UK. It was presented with remarkable efficiency by Patricia Howlin. You can find the abstract here.

This study included an experimental group of 28 preschool children in early intensive ABA programs, and a control group of 16 children in "autism specific nursery provision" which, unlike intensive ABA programs, is fully funded by the UK government. Because this is a community study, the groups were not randomly assigned. Outcomes after one and two years were compared.

Dr Howlin showed graphed data from the experimental group kids first. As a group, they clearly improved over time in the chosen measures--just like the kids in Isabel Smith's study.

Beside these data, she then added the data from the control kids. It looked the same as the ABA kids' data. And indeed, she found no significant difference in outcome measures between groups after two years.

Instead, she found large individual differences among the children, regardless of which group they were in. Dr Howlin presented this data graphically.

Having presented her own data, she went on to present a mini-meta-study (well, I can't think of a better name for it) of ABA group designs. She started with the long list of how these studies are inconsistent with each other in multiple aspects of their design. Then she graphed how widely (and wildly) results in various measures differ among the ABA group designs where these data are available.

Dr Howlin's ABA study is in press at JCPP (Journal of Child Psychology and Psychiatry), but not yet available online. I'd like to see the paper before I comment any more on her actual findings. But if her findings hold up under scrutiny, they will be evidence of how autistics have been ill-served by the widely-accepted and -practiced autism advocacy position that true experimental designs--and more generally the scientific and ethical standards that serve to protect and benefit all non-autistics--are not something autistics deserve.


Reference:

Volkmar, F.R., Lord, C., Bailey, A., Schultz, R.T., Klin, A. (2004). Autism and pervasive developmental disorders. Journal of Child Psychology and Psychiatry, 45, 135-170.

Friday, May 11, 2007

How many hours is forty hours?

For those interested, my first-author poster at this year's IMFAR (International Meeting for Autism Research) has been posted on the No Autistics Allowed website.

That would be this poster:

Dawson, M., & Mottron, L. (2007, May). How many hours is forty hours? Range of treatment intensity in Lovaas (1987). Poster presented at the International Meeting for Autism Research. Seattle, WA.

You can find it as a pdf linked to this page. This page also provides the full text for the excerpts of Leaf's testimony. These excerpts aren't clear on the small pdf of the poster, unlike on the original ppt version (if anyone wants the ppt version, they can write to me).

It is such an unconventional poster that I'm pretty sure we were all surprised it was accepted for IMFAR. The information we put forward raises a lot of interesting questions at multiple levels. One of the most basic questions for me was, does this kind of information belong in a venue like IMFAR? Is it autism research? The answer was yes (at least so far). This leads to more questions, about what to do with the information we have, and about what may or may not be accurate information in this case.

We don't, e.g., know who's right, or how many hours forty hours is. But for now it remains a possibility that if accurate information had been provided by Lovaas and colleagues going back 20 years, re treatment intensity in the experimental group in Lovaas (1987), then the subsequent behaviour analytic research in autism may have looked somewhat different than it does now.

Setting aside all the uncertainties and unknowns (in the absence of accurate information from the authors in question), it seems that there should be agreement on one point. Accurate information may not always serve the many vested interests of scientists, service providers, advocacy groups, politicians, and lobbyists. But accurate information always serves the real-life interests of autistics. Then it's a matter of deciding on priorities.

IMFAR was overwhelming, as usual (this was also the first IMFAR where I was involved in more than one presented study as an author), and this year I have a variety of post-IMFAR deadlines to make things a bit more challenging. I hope I'll eventually blog something useful about IMFAR 2007, once the haze clears and the dust settles.

Tuesday, April 03, 2007

The autistic person's burden

The major media have been buzzing with stories about the crushing burden autistics place on non-autistics. This reporting stems in part from the journal publication of data also published in a 2006 book (with the unintentionally ironic title of "Understanding Autism"), summarizing every autistic life as a vast financial liability.

This is also partly the fanfare surrounding the release of Canada's Senate Committee autism treatment funding report, which is poetically called "Pay Now or Pay Later".

This title resonates with the advertising slogans of "diagnostic teams" in India, as recently reported in The Times. These diagnostic teams promise to eliminate disabled children--those lacking a Y chromosome--before birth, thus entirely relieving families of the massive financial burden of raising a female child. And they provide a compelling cost-benefit analysis in their slogans:

"pay 600 rupees now, save 50,000 rupees later”

The media have also been buzzing about the latest Autism Speaks creation, the Interactive Autism Network. This network, like its sponsor, was created without any autistic input whatsoever, and is likely to continue that way. Non-autistic parents of autistic children, in contrast, are welcomed as essential and expert collaborators.

In her most recent editorial, The True Meaning of Research Participation, Association for Psychological Science President Morton Ann Gernsbacher has written a powerful antidote to these two related problems: the wholesale exclusion of autistics from any decisions related to autism research, and the escalating rhetoric relegating autistics to the role of non-autistic person's burden.

Here she provides insight into how these two aspects of prejudice may go hand in glove:

It takes just a cursory stroll through history to view the shocking collage of groups deemed incapable of stepping up to the research plate. In 20th century psychological science alone, we have Mary Whiton Calkins, the brilliant protégé of William James who, by lack of a Y chromosome, was denied her PhD at Harvard (but who later became APA’s first female president). It’s quite unlikely that APA’s founder and first (male) president, G. Stanley Hall, believed that members of ethnic minority groups would be suitable research collaborators, given his disturbing attribution of “adolescent races” who “would be better in mind, body, and morals if they knew no education.”

Maybe we shouldn't be surprised that when females and non-whites were written off as unqualified to collaborate in research, they were also judged to be burdens and dependents on their natural superiors--as in "the white man's burden".

While it makes me blush, I strongly recommend that you follow the link to Dr Gernsbacher's column and read the whole thing, and contemplate who is a burden on whom.

No one has yet calculated the costs to autistics, and to society, of the current widespread autism advocacy effort to create a world where there are no autistic people at all.

The truly staggering costs of this effort, and its consequences and byproducts, are unlikely ever to be calculated. After all, autistics are now routinely judged as having and being nothing to lose. The only way we can possibly benefit society is to stop existing--surely, society can pay even less if the existence of all autistics is prevented? Surely society would be better, if only us suboptimal types who are dragging down society receded into history and vanished?

Unless autism advocacy--the autistic person's burden--is successfully supplanted by genuine science- and ethics-based efforts to assist autistic people, we will never find out what autistics can achieve and contribute, in a society where it is okay to be autistic.

Wednesday, March 28, 2007

The autism research rogues gallery

Unfortunately, I don't have time or room to post all their photographs. So this isn't a proper rogues gallery--more like a rogues list.

This would be a list of researchers whose names appear on published or in-press peer-reviewed journal papers which find cognitive strengths in autistics, that is, which report data showing that autistics perform significantly better than non-autistics on various tasks or tests.

As I wrote in my first post here, autism advocacy is the widespread effort to make the world as free of autism--that is, of autistic people--as possible. According to autism advocates, autism research must support their autism advocacy needs and agendas. Otherwise, it should not be conducted much less reported. Researchers whose research designs (whether they like it or not) result in autistics outperforming non-autistics are therefore a bunch of rogues. We should be ashamed of ourselves for cluttering up the peer-reviewed literature with findings that are not going in the right direction.

Only authors of papers reporting data involving groups (autistics versus non-autistic controls matched in various ways) are included in this rogues list. Some researchers appear in the authorship of only one such paper; others appear in several. Here are the rogues:


Aldridge, Alcantara, J.M. Anderson, M. Anderson, Applebaum, Arguin, Barber, Baron-Cohen, Barrett, Bauman, Belleville, Bender, Bernard, Berthiaume, Bertone, Beversdorf, A. Bonnel, A.M. Bonnel, Brindley, Burack, Butler, Caron, Chawarska, Chen, Cherkassy, Chouinard, Cottington, Crucian, M. Dawson, de Jonge, Driver, Durkin, Egel, Enns, Faubert, Felopulos, Findling, Finn, Foxton, Frith, Gallun, Gernsbacher, Gilchrist, Griffiths, Hamilton, Happé, Heaton, Heilman, Hermelin, Hughes, Iarocci, Imhoff, Jarrold, Jelenic, Jemel, Jiminez, Joliffe, Just, Kamio, Kana, Keillor, Keller, Kemner, Klin, R. Koegel, Lahaie, Langdell, Lawson, Leekham, Lockyer, Lopez, Maley, Maybery, Ménard, Minshew, Mitchell, Moore, Morasse, Mottron, Nadeau, O'Brian, O'Riordan, Peretz, Pellicano, Plaisted, Pring, Prior, Okada, Rainville, Raymeakers, Robaey, Rodgers, Ropar, Roeyers, Rutter, Sakihama, Saksida, Saumier, Scheuffgen, Sears, Shah, Sheppard, B.W. Smith, Soulières, Spong, Stauder, Steinmetz, Stewert, Stone, Sweeney, Tager-Flusberg, Toichi, van der Meere, van Engeland, Volkmar, Weisblatt, Wheelright, Yamamoto, Young, Youngstrom


This is a very incomplete list--it's more or less off the top of my head. And in deference to ubiquitous and anti-scientific autism advocacy prejudices re autistic savants, I've left out the entire savant and hyperlexia literatures, which would add considerably to the above rogues. I've left out studies which have been presented at major research conferences, but have not yet been published--which means that well-known names (in autism or other fields) like Ullman, Mostofsky, Joseph and Strauss have for the time being been spared rogue status. If I had more time, I'd list all the rogue researchers' rogue universities, and I'm sure anyone versed in autism research can spot the knight--as well as the famous behaviour analyst--among the rogues.

I've also left out the problem of the impressive heap of findings in the peer-reviewed literature showing autistics performing as well as their non-autistic controls.

Autism advocates making sweeping "autism reality" assumptions about the functioning levels, "severity", etc., of the autistic participants whose strengths were advertantly or inadvertantly revealed by the rogues will be displaying their own unfamiliarity with the published literature in autism.

Monday, March 12, 2007

Intake IQ in Lovaas (1987)

I'm grateful to Harold Doherty for providing me with a distraction from being pulverized at the Tribunal. Mr Doherty is doing science again, with the usual autism advocacy standards. This time, Mr Doherty takes on a "myth" about the intake IQs of the experimental group in Lovaas (1987).

So let's look at those intake IQs.

I'm not going to launch into a lecture about deviation vs ratio IQs. This is a relevant issue here, but it can largely be circumvented by using the measure Lovaas (1987) used at intake, the PMA (prorated mental age), and its derived ratio IQs. All the sources I cite are peer-reviewed journal articles with Ivar Lovaas in the authorship, and the information I provide can be verified from these articles.

Using the reported PMA in Lovaas (1987), the mean intake IQ in the experimental group is 63. This is an average score in the "mildly retarded" range.

In the "Method" section, Lovaas (1987) also reports that, at intake, 2 experimental group children were in the normal range of intelligence (IQ 70 or more); none was in the "mildly retarded" range (IQ 50-69); 7 were in the "moderately retarded" range (IQ 35-49); and 10 were in the "severely retarded" range (IQ 20-34). None was in the "profoundly retarded" range (IQ of less than 20). Dr Lovaas also reports that this distribution of IQ scores is "identical to that for Control Group 1".

But--even if you assign the normal range children an IQ of 100--I haven't been able to find any report of the range of ratio IQs for the whole experimental group--and also assign all the other children to the highest possible scores in their respective categories (7 children with 49 IQ; 10 children with 34 IQ), this does not even approach a group average of 63. Instead, the average is 46.

It is statistically improbable that all those kids had, at intake, the highest scores within their assigned ranges, and it also looks impossible for the two normal range children to have ratio IQs as high as 100 (this would be inconsistent with reported deviation IQs; McEachin et al., 1993). But even this exercise in trying to produce the highest possible average intake IQ falls well short (17 points) of the reported average.

In the "Results" section, Lovaas (1987) reports that at intake, there were 10 children in the "moderate to severe range", as opposed to the 17 ("moderate" plus "severe" children) reported earlier in this paper.

Smith et al. (1993) report that 5 of the 19 children in Control Group 1 in Lovaas (1987) were "high-functioning", that is, had an IQ of 70 or more at intake. This contradicts the account in Lovaas (1987), where it is reported that only 2 of the 19 children in both the experimental group and Control Group 1 had IQs in the normal range (70 or more). Smith and Lovaas (1997) report a total of 9 children (experimental group and Control Group 1) who have IQs of 75 or more. If this figure is correct, and if 5 of these children were indeed in Control Group 1 (assuming none of the kids with IQs over 70 had IQs under 75...), then 4 must have been in the experimental group. This leaves open the question of whether the experimental group might have included more than 4 children with IQs of 70 or more.

Smith et al. (1997) correctly report that all children with ratio IQs of less than 37 were excluded from Lovaas (1987). That is, none of the experimental group children in Lovaas (1987) was in the "severely retarded" range at intake. This is contrary to what is stated in Lovaas (1987), where it is reported that 10 children--the majority--are in this range.

Lovaas and Smith (1988) add that the average intake IQ of the 9 children who achieved "normal functioning" in Lovaas (1987) is "slightly under 70". In fact it is 70 (69.7), which would be considered (just) in the normal range. And "in the normal range" is another way to say "high-functioning".

Summary?

Lovaas (1987) does not include any autistic children whose intake IQs are in the "severe" and "profound" ranges. The average experimental group intake IQ is in the "mild" range, and the average for those children who achieved normal functioning is (just) in the normal--"high functioning"--range. And the distribution of intake IQ scores is incorrectly (and inconsistently) reported in Lovaas (1987).

These are data I absorbed long ago and carried around for a long time. Only when I saw Mr Doherty's latest foray into science was I reminded to cough them up. Autism advocates who use websites as authoritative sources miss all the fun (and avoid all the hard work) of looking at data from primary sources. As usual, any factual criticisms are welcome--and if anyone can find (I'm sure it's right in front of me somewhere...) a reported range of ratio IQs (not deviation IQs) for the full experimental group in Lovaas (1987), you'll be awarded a trip to that Tribunal hearing (or maybe not).


References:

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.

Lovaas, O.I., and Smith, T. (1988). Intensive behavioral treatment for young autistic children. In B.B. Lahey, and A.E. Kazdin (Eds.), Advances in Clinical Child Psychology, 11. New York: Plenum Press.

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.

Smith, T., & Lovaas, O.I. (1997). The UCLA Young Autism Project: A reply to Gresham and McMillan. Behavioral Disorders, 22, 202– 218.

Smith, T., McEachin, J.J., & Lovaas, O.I. (1993). Comments on replication and evaluation of outcome. American Journal on Mental Retardation, 97, 385–391.

Smith, T., Eikeseth, S., Klevstrand, M., and Lovaas, O.I. (1997). Intensive behavioral treatment for preschoolers with severe mental retardation and pervasive developmental disorder. American Journal on Mental Retardation 103, 238-249.

Sunday, March 11, 2007

Verbatim: Matthew Belmonte's hidden abilities

Matthew Belmonte spent four years working with Simon Baron-Cohen in Cambridge, and is now at Cornell. This passage, reflecting on priorities and presumptions rampant in autism research, is from a 2004 review.

It is quite remarkable and difficult to fathom that we currently have more functional imaging data about how the autistic brain processes a face or a theory of mind than we do about the way it processes, say, location, colour, orientation, or spatial frequency; at what level of processing do the perceptual and cognitive abnormalities begin? It is also important to recognise that absence of behavioural performance or functional activation does not necessarily imply incapacity of the corresponding brain subsystems. Rather, an apparent lack may be due to failure to engage an intact capacity. The proper stimuli or experimental paradigm can bring out such hidden abilities.


Reference:

Belmonte, M.K., Cook Jr, E.H., Anderson, G.M., Rubenstein, J.L.R., Greenough, W.T., Beckel-Mitchener, A., Courchesne, E., Boulanger, L.M., Powell, S.B., Levitt, P.R., Perry, E.K., Jiang, Y., Delorey, T.M., & Tierney, E. (2004). Autism as a disorder of neural information processing: Directions for research and targets for therapy. Molecular Psychiatry, 9, 646-643.

Wednesday, March 07, 2007

IMFAR 2007 abstracts

The 2007 International Meeting for Autism Research (Seattle this year) schedule for oral and poster presentations has been posted here. I'm involved in three studies at IMFAR this year. Here are the abstracts for two of them:


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

HOW MANY HOURS IS FORTY HOURS? RANGE OF TREATMENT INTENSITY IN LOVAAS (1987)
M. Dawson, L. Mottron

Background: 40hrs/wk of one-to-one treatment--the reported intensity of ABA-based intervention received by the experimental group in Lovaas (1987) and McEachin, Smith and Lovaas (1993)--is a benchmark in autism research.

Objective: To compare accounts of hrs/wk received by the experimental group in Lovaas (1987) and McEachin, Smith and Lovaas (1993).

Method: We compared detailed 2004 sworn legal testimony from a behavior analyst (Leaf) directly involved in treatment of 10 of the 19 experimental group children reported in Lovaas (1987) and McEachin, Smith and Lovaas (1993), to descriptions in published articles authored by Lovaas, Smith and/or McEachin.

Results:
34 published descriptions of hrs/wk in the experimental group authored by Lovaas, Smith and/or McEachin, report 40hrs/wk with no range; 4 descriptions (including 1 in both Lovaas, 1987, and McEachin, Smith & Lovaas, 1993) specify 40hrs/wk was a minimum (e.g. "40 hours or more per week", "more than 40 hours"); 7 specify an average of 40hrs/wk, including the only account by Leaf; 3 specify "normal functioning" children received 40hrs/wk; 1 is ambiguous; 2 specify "approximately" 40hrs/wk; and the rest are unqualified. Leaf testified (from Wynberg et al. v. Ontario; Leaf, pp. 16687-16692 [Compendium, Vol. II, Tab 23, pp. 692-697]) under oath that 40 hrs/wk was a group average; range in the experimental group was 18 to "in the 50 range" and that 2 of the 9 "normal functioning" children received 18 hrs/wk which diminished over time.

Conclusion: Leaf's testimony questions the influential premise that high intensity of treatment in Lovaas (1987) was essential in achieving "normal functioning". In the current absence of ABA controlled trials correlating treatment intensity with outcome measures, and considering the landmark status of Lovaas (1987) and its follow-up, we suggest that accurate data re treatment intensity and its relation with outcome measures be provided by the authors.

Sponsor: CIHR



Université de Montréal

INTELLIGENCE IN AUTISM: WHAT ARE THE GOOD PREDICTORS?
L. MOTTRON, I. Soulières, M. Dawson, M. Gernsbacher

Background: Recent findings of discrepancies between intelligence in autism as measured by Wechsler and Raven's Progressive Matrices (Dawson et al, in press) lead to the reconsideration of established relations between variables characterizing the autistic phenotype and intelligence level reached.

Objectives: To establish how early developmental milestones and cross-sectional adaptive level predicts the intelligence level measured by various instruments, including the Raven's Progressive Matrices.

Methods: All measures were extracted from the socio-demographic data of Rivière-des-Prairies Hospital's database, which contains diagnostic and cognitive information on approximately 200 ADI and ADOS-G positive autistics. Correlations were computed between age at first words/phrases-word and other ADI items at age 4-5 and subtests, subscales and global Wechsler intelligence level (WISC-III and WAIS-III), Raven intelligence level, and Vineland adaptation level in school-age children and adults.

Results: Age at first words/phrases was not significantly correlated with intelligence level achieved later in childhood or adulthood, whether measured with Wechsler Scales or Raven's Progressive Matrices. Furthermore, ADI scores (social, communication and repetitive behaviours) was not significantly correlated with intelligence in adulthood.

Conclusion: The age at which first words or phrases are spoken by in autistic children does not predict intelligence level achieved later in childhood or adulthood. Also, ADI scores, often taken to index the so-called "severity" of autistic symptoms, does not predict cognitive outcome in adulthood.

Sponsors: CIHR

Sunday, March 04, 2007

Autism advocacy at the Canadian Human Rights Tribunal

My Canadian Human Rights Tribunal case resumes hearings tomorrow. We previously (in 2006) had eight hearing days. Ten more are now scheduled. This is the first autism-related case to be referred for a hearing to the CHRT.

The referring body is the Canadian Human Rights Commission, which investigates complaints under the Canadian Human Rights Act. I had a previous case at the CHRC involving the same Respondent (my employer, Canada Post), which was rapidly settled in my favour. But the current case has proceeded extremely slowly and arduously. Before it was finally referred to the CHRT (three years after the complaint was signed), my current case had involved two investigations (this is unusual), as well as two formal written apologies to me from the CHRC, one from the Chief Commissioner's Office. I frequently encountered autism advocacy views in those I had to deal with at the CHRC. This twice had the effect of killing my case, and twice I had to make formal within-CHRC complaints, which were found to be justified.

At the CHRT, the CHRC is also acting as a party in my case, meaning that these hearings involve three parties--Canada Post, my employer; the CHRC; and me. Are you confused yet? You should be.

At the CHRT, the CHRC is supposed to represent the "public interest". This raises interesting questions in the area of autism. In my case, the CHRC has largely been adversarial. This is not surprising, given that the "public interest" in autism is in Canada defined by autism advocates. According to the jurisprudence resulting from autism advocacy, autistics are not even human (unqualified for "membership in the human community"), and therefore do not have human rights, unless we have undergone unlimited ABA/IBI starting very early in life. As autism advocates argued successfully in both the Wynberg and Auton trials, only through ABA/IBI can autistics become human, and acquire the rights guaranteed for all non-autistic Canadians. An issue at the CHRT is whether ABA-deprived autistics are human.

I am representing myself at the CHRT. I am a truly appalling lawyer, when it comes to saying things in hearings. I can write an argument if I have a lot of examples to work with. In this case, I produced a mediation brief and a statement of particulars without really knowing what either was or what they should consist of. But I am at a total loss when it comes to speaking in a hearing. It doesn't help that I've been treated like a spectator rather than a party. It is extremely difficult just to be a witness. I am the only witness on my side of the case. I do not know how to call witnesses at the CHRT, which has idiosyncratic and arbitrary (made up as you go along) rules that diverge from more standard forms of litigation, and could not find out from anyone.

Human rights lawyers in Canada, including those few with experience at the CHRC and CHRT in disability issues, have supported or represented autism advocates in ABA-related litigation. They are not interested in helping an autistic to argue that ABA-deprived autistics are human, and contribute to society because we're autistic, not in spite of this.

Many issues in this case have been decided already, and I am not sure if I should continue. I am quite sure that the decision in this case will be harmful to autistics. Its only advantage will be that it will reflect "autism reality", that is, the overwhelming success of autism advocates in disseminating false and pejorative information about autistics, in spreading fear and dread of autistic people (this being a central issue in my case), and in ensuring that autistics are unquestioningly regarded as undeserving of recognized standards of science and ethics (including professional ethics).

One of many issues involved is accommodation. I asked to use a simple accommodation I had used previously at work. In spite of this accommodation costing Canada Post nothing (in time, trouble, or money), and in spite of it having been granted without question previously, it was this time refused.

This should be an easy issue. This was not an accommodation that could cause Canada Post "undue hardship"--the legal criterion that allows an employer or service provider to refuse accommodation. However, I asked to be accommodated in the CHRT hearings in similarly easy ways, and this has been refused by the CHRT member hearing my case. This member (the CHRT equivalent of a judge) characterized my requests as unreasonable. An employer can't be ordered to behave better than the CHRT. So a de facto decision re accommodation has been made, and that decision is that even easy, cost-free accommodations for autistics can and should be denied as being unreasonable.

The absence of the simple accommodations I asked for has caused chaos in the hearings. For example, I'm not allowed to communicate in text. So when I was unable to speak, I had to leave the room. Any attempt to make the hearings possible to endure has been, and no doubt will continue to be, judged as my being unreasonable or rude. I do not expect to be able to finish the remaining 10 days of hearings in this situation, but I will at least show up.

The de facto decision re accommodation, and my own extreme incompetence in this arena, are far from the only problems which are likely to result in a harmful decision. Others include the CHRC investigation process being a CHRT-protected haven for human rights violations. I don't have the time (or the brains, right now) to fully explain this here, but this fact alone (a respondent is free to grossly violate the rights of a complainant, in ways that can put the complainant in danger, with impunity so long as this is within a CHRC investigation) means I will never make a CHRC complaint again.

But the major problem is that the CHRT condones and embraces autism advocacy.

The CHRT has a Code of Conduct for its members (judges), which states,

it must be recognized that members of the Tribunal have been appointed because of their experience, expertise and interest in, and sensitivity to, human rights.

This requirment--for expertise in and sensitivity to human rights--is stated in the law itself (Canadian Human Rights Act). One of the CHRT's current members (judges) is Michel Doucet, who is from New Brunswick. Mr Doucet was first appointed to the CHRT (by the federal cabinet) in 2002.

In 2001, Mr Doucet made statments in the media, supporting the Auton trial decision. He was commissioned by Autism Society New Brunswick to write a report about this decision and the rights of autistics, among other things. This report appears to have been funded at least in part by the now-defunct Canada Court Challenges program, and is (or was) available free from this government body. I first found out about this report in 2002, when my then-MP received a copy, and copied me with a letter she wrote in consequence to the health minister. I knew the name of the report's author, but I did not, until this past summer, connect the Michel Doucet who wrote this widely-distributed report with the Michel Doucet who is a current CHRT member.

You can find Mr Doucet's report here.

It is prime autism advocacy, uncritically quoting and embellishing on the Auton trial decision, equating autism with cancer and AIDS, and claiming, as was claimed in Auton, that autistics are doomed and just naturally belong in institutions unless we receive Lovaas ABA from an early age. Mr Doucet's embellishments include giving the behaviour analyst Glen Davies (PhD, not MD) status as a "medical expert". This is in the context of Dr Davies' statement that it is wrong to provide autistics with support when a treatment which promises to "recover" or "cure" half of us is available. Mr Doucet repeats this statement twice.

Mr Doucet's rationale is seen in his distortion of the the Supreme Court of Canada decision in the Eldridge case. Here is what Eldridge says:

Persons with disabilities have too often been excluded from the labour force, denied access to opportunities for social interaction and advancement, subjected to invidious stereotyping and relegated to institutions [...] This historical disadvantage has to a great extent been shaped and perpetuated by the notion that disability is an abnormality or flaw. As a result, disabled persons have not generally been afforded the “equal concern, respect and consideration” that s. 15(1) of the Charter demands. Instead, they have been subjected to paternalistic attitudes of pity and charity, and their entrance into the social mainstream has been conditional upon their emulation of ablebodied norms [...]

Here is Mr Doucet's distortion, complete with the kind of offensive language ("afflicted" etc.) which is featured in his report:

The history of people afflicted with autism in Canada is largely one of exclusion, marginalization and institutionalization. They have been denied access to opportunities for social interaction and advancement and have been subjected to invidious stereotyping and in more cases than other relegated to institutions. This historical disadvantage has to a great extent been shaped and perpetuated by the notion that autism is not a medical condition and that treatment for autism is not a medically necessary service. As a result people who suffer from autism have not generally been afforded the equal concern, respect and consideration that s. 15(1) demands. Individuals who suffer from autism have been subjected to paternalistic attitudes of pity and charity and that their entrance into the social mainstream has been denied.

In both quotes, I've added emphasis in blue. Mr Doucet argues that autistics are sick, and it is the failure of society to recognize that autism is a disease (just like cancer) and must be gotten rid of via "medical" treatment (that is, Lovaas ABA) that constitutes the denial of the human rights of autistics. His very selective distortions of Eldridge show that he has no problem with the "medical" treatment he promotes having the stated purpose of requiring autistics to "emulate able-bodied norms". In Mr Doucet's report, autistics are not like the disabled people described in Eldridge, who have rights and value and dignity and humanity as disabled people. No, autistics are just sick. We are indeed abnormal and flawed (afflicted and suffering), and only "medical" treatment requiring us to emulate healthy, non-autistic people can save us from our tragic doom. Mr Doucet's views resonate with the entirely negative views of autism and autistic people that Canada Post has embraced and acted on.

Mr Doucet is not hearing my case, but his publicly available work represents what the CHRT considers to be expertise in and sensitivity to the human rights of autistics. It is unreasonable to expect an employer to behave better than the CHRT.

I've found it striking how many people have not been able to see the problem, which would be obvious if the issue weren't autism. Possibly, the problem is that you cannot imagine this happening in any other area. You cannot imagine a lawyer who writes a report full of false and pejorative statements about gay people being appointed to the CHRT, so it becomes very difficult to imagine the consequences were such a member appointed, no matter whether this member heard cases having to do with homosexuality. It is the standards of the CHRT that are displayed when members are appointed and have their appointments renewed, as has Mr Doucet. If the CHRT embraces (as expertise in and sensitivity to human rights) grossly false characterizations of and prejudicial stereotypes about homosexuals--or autistics--there is no way for the CHRT to hold an employer accountable for holding identical or equivalent views--in my case, autism advocacy views--and acting on them.

Canada Post has, after all, done what Mr Doucet and so many in Canada are applauded for doing--including applause from Canada's government--in this era of autism advocacy. They have joined the fight against autism.


[NOTE: The eminent Canadian autism advocate and lawyer, Harold Doherty, has blogged about this case. The information he provides is, predictably, inaccurate and misleading.]

Saturday, February 24, 2007

Verbatim: Kanner's autism

This is a description of one of Leo Kanner's autistic "patients", from a follow-up study Kanner published in 1956 with his colleague Leon Eisenberg. This paper is reprinted in Kanner's 1973 book.

Jay S., now almost 15 years old, presented in the lower grades considerable difficulties to his teachers, who were exceptionally understanding and accepting. He wandered about the classroom, masturbated openly, and staged temper tantrums. He learned to conform, did phenomenally well in mathematics, was sent to an accelerated school, and is now finishing the eleventh grade with top marks. He is a peculiar child, rather obese, who spends his spare time collecting maps and postage stamps and has little more to do with people than is absolutely necessary for the maintenance of a superficial relationship. He achieved a Binet IQ of not less than 150.


Reference:

Kanner, L. & Eisenberg, L. (1956/1973). Notes on the follow-up studies. In Kanner, L., Childhood Psychosis: Initial Studies and New Insights. Washington D.C.: Winston, pp 77-90.

Sunday, February 18, 2007

Autism advocates do not take autism seriously

Autism advocates trivialize autism. They do not take autism seriously. For example, compare autism advocacy to advocacy in other disability areas. Here is the Canadian Down Syndrome Society, defining Down syndrome:

Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition. The occurrence of Down syndrome is universal across racial and gender lines, and it is present in approximately one in 800 births in Canada.

Down syndrome is not a disease, disorder, defect or medical condition. It is inappropriate and offensive to refer to people with Down syndrome as "afflicted with" or "suffering from" it. Down syndrome itself does not require either treatment or prevention.


Autism, like Down syndrome, is a neurodevelopmental disability. According to autism advocates, the CDSS has fallen to the siren song of DS. The failure of the CDSS to identify DS as a terminal disease and blight on society, and their failure to deny the humanity of DS people, is a destructive and deluded squandering of the lives and futures of DS children.

In the world outside of autism advocacy, CDSS takes DS seriously, and therefore considers that services for DS people should be asked for accurately, ethically, and respectfully.

I did not get involved in autism advocacy issues by choice. Autistics in Canada live daily the consequences of autism advocacy, and those consequences include being put in danger.

Having lived the consequences of autism advocacy, I wondered why autism advocates were unwilling or unable make their demands for services, whatever those services may be, accurately (with respect to the existing science), ethically, and respectfully. I also wondered why autism advocates demanded low or no standards of science and ethics for autistics, as opposed to the high standards that automatically protect and benefit themselves.

A possible, evidence-based answer to these questions is that autism advocates don't take autism seriously. They have not bothered with the hard work of slogging through primary sources, of critical thinking, of the comprehensive and impartial (in every sense) gathering of information that is the necessary foundation for ethical decisions. Autistics are just too appalling and blighted and doomed. We aren't even human. We're not worth the bother--the hassle of seriously applying recognized standards of science and ethics.

Instead, autism advocates equate autism with terminal cancer. They have wished their child had cancer instead of autism (also see this). And they have said that autism is worse than cancer because autism does not kill us. This autism advocacy staple has the purpose of spreading dread and horror of autism, of denying the worth of autistic lives, of informing Canadians that it is better to die painfully of cancer than to be autistic and alive.

Promoting autism as a degenerative disease process is also anti-scientific and unlikely to result in research leading to genuine help for autistic people. Similarly, models of autism premised on autistic brains being damaged versions of non-autistic brains have comprehensively failed (that includes Laurent Mottron's "agnosia" model). No deficit-based account of autism has (after 64 years of research) achieved any kind of consensus in the science, possibly because deficit-based accounts have so far made remarkably poor predictions.

Autism advocates consider peer-reviewed papers reporting autistic abilities (found either intentionally or accidentally) to be romanticized and dangerous nonsense, misleading and uninformative. All findings in autism research should therefore (according to autism advocates) be interpreted as deficits or not interpreted--or reported--at all. Researchers who find and investigate autistic abilities should not be funded and their foolish and dangerous work should not be published or discussed or for that matter, allowed.

For example, if peer-reviewed research shows that young autistic children--those who would popularly be considered "severely autistic", "non-verbal" and "low-functioning"--communicate competently but are persistently ignored by their typical parents (Keen, 2005) and teachers (Keen et al., 2005), then this science has surrendered to the deadly siren song of autism and must be discarded.

This is even though, or rather, especially because it was demonstrated that these very young autistic children detect when their communication has failed, and make multiple efforts to repair this failure, including by using strategies considered too sophisticated for their presumed developmental level. Also (it only gets worse), earlier attempts to communicate by these autistic children were not problematic. It was only their later efforts, after earlier attempts had been ignored and the children were repeatedly forced to effortfully create repair strategies, that the children's attempts to communicate became problematic.

To avoid romanticizing autism and squandering the lives and futures of children, autism advocates have rejected this obviously unacceptable research, and instead have forcefully promoted autistics as being non-communicative and non-responsive. This advocacy has been so successful that autistics are described this way in the House of Commons. The full success of autism advocacy can also be seen when autistics are described in the House of Commons as "violent" and "self-destructive".

Autism advocates are definitely onto something here. It is true that persistently describing and treating autistic children or any other kind of children as non-sentient--as non-communicative and non-responsive--will very likely result in their behaviour becoming problematic. In fact, very few adults deal gracefully with being persistently treated as though non-sentient. So this is an impressive show of the power and influence of autism advocacy, and its consequences. But is this taking autism seriously?

Yes, autism advocacy is impressive in the area of spreading fear, dread, horror, and hatred of autism. Autism advocates have demanded that autism be seen as a horrific disease process or tumour, while simultaneously reducing autistics to collections of inadequate, inappropriate, maladaptive, repugnant, repulsive, etc., behaviours. These efforts have been successful. But promoting autistics as non-responsive and non-communicative is anti-scientific, unethical, and harmful. Associating violence with disability is no more accurate or acceptable than associating violence with race. The autism advocacy wholesale vilification of any science (now characterized as the killer rocky shore that breaks and destroys children) that fails to confirm their absolute certainties about autism is a trivialization of autism. It is the opposite of taking autism seriously.

Autism advocates also trivialize autism by promoting ABA-based autism interventions as "medically necessary" autism treatment. This contradicts basic principles of ABA, the bulk of the behaviour analytic literature in autism, and particularly the work of Ivar Lovaas and colleagues (Lovaas, 1979; Lovaas and Smith, 1988, 1989; Lovaas, 1993; Lovaas, 2002; etc.). Autism advocates also place ABA-based autism interventions high above scrutiny or criticism. If I provide factual and verifiable criticisms of the behaviour analytic literature, then (I'm told), I'm expressing "anti-ABA prejudices".

This is as absurd, as non-serious, as claiming that I have "anti-cogntive-science prejudices" and "anti-cognitive-neuroscience prejudices" because I have harshly criticized science and scientists in these areas of autism research (and continue to do so).

The autism advocacy rejection of criticism and scrutiny as "anti-ABA prejudice" places ABA outside the domain of science, which is dependent on criticism, and into the realm of ideology. Autism advocates demand that all decisions made about autistics conform to their ideology, which cannot be questioned or challenged in any way. They want the scientific and ethical standards that benefit and protect all non-autistics disregarded when it comes to legal and public policy decisions about autistics. This too is the opposite of taking autism seriously.

Autism advocates have further trivialized autism by successfully promoting grossly anti-scientific epidemiology which has the effect of denying the existence of most autistics in Canada, and therefore denying most autistics in Canada even minimal services. This demonstrates how autism advocates write off all autistics who have not undergone unlimited "medically necessary" ABA/IBI starting very early in life. So does the widely disseminated autism advocacy position that autistics who do not receive unlimited "medically necessary" ABA/IBI starting early in life need to be abused (kept in restraints, our teeth pulled) in institutions. Autism advocates have been successful in making Canadian society unsafe for any autistic who is not in an ABA program, but is this taking autism seriously?

Autism advocates have also claimed to know with certainty the adult outcomes of autistics who undergo early ABA/IBI. There is no peer-reviewed science to justify this certainty. When there is no science whatsoever to support their positions, autism advocates respond by pretending that there is. Here again are the standards of science and ethics that autism advocates believe autistics deserve, but is this taking autism seriously?

The autism advocacy campaign to legally mandate ABA/IBI as "medically necessary" treatment for Rett's individuals also exemplifies the standards of science and ethics autism advocates find appropriate for autistics. This demonstrates exactly how seriously they take autism and the well-being of autistic people.

Autism advocates also trivialize autism, and show off the scientific and ethical standards they are sure that autistics deserve, by creating and applying novel, untested diagnostic categories and criteria. They are so creative, they can diagnose adults and children, and describe our lives in detail, without having met us or knowing anything about us. They also claim that there are perfect predictors of outcome in autism. The purpose is to divide autism into the (apparently innate) categories of "real" and presumably "fake" autism. When I have time, I'll blog about the empirical bases and seriousness of this "autism reality".

Autism advocates further trivialize autism by responding to any criticism of their actions and statements with mockery, misrepresentation, and defamation. They consider themselves to be infallible. They are right about everything all the time. Their actions, which have consequences for all autistic Canadians at the level of law and public policy, are sacrosanct--anyone who criticizes them in any way is not only deluded, but reprehensible, pernicious, and dangerous (and in my case, a fraud, imposter, and criminal). This makes a productive, science- and ethics-based, respectful public discourse about autism impossible.

The actions of autism advocates have unsurprisingly resulted in Canada's government and major opposition parties agreeing that autistics shouldn't exist at all. Contrast the non-serious non-response of autism advocates to this political consensus that autistic lives should be prevented, with the careful and very serious actions and statements of the CDSS in response to recommendations re prenatal screening. You can see the CDSS in recent media stories here, here and here.

Autism is a disability. Here is a description of what disability means, from the Supreme Court of Canada decision in the Eldridge case:

It is an unfortunate truth that the history of disabled persons in Canada is largely one of exclusion and marginalization. Persons with disabilities have too often been excluded from the labour force, denied access to opportunities for social interaction and advancement, subjected to invidious stereotyping and relegated to institutions [...] This historical disadvantage has to a great extent been shaped and perpetuated by the notion that disability is an abnormality or flaw. As a result, disabled persons have not generally been afforded the “equal concern, respect and consideration” that s. 15(1) of the Charter demands. Instead, they have been subjected to paternalistic attitudes of pity and charity, and their entrance into the social mainstream has been conditional upon their emulation of ablebodied
norms
[...] One consequence of these attitudes is the persistent social and economic disadvantage faced by the disabled.
[emphasis in blue is mine]

This powerful and accurate definition of disability shows that autistic people are indeed severely disabled in Canadian society. We are at a tremendous disadavantage. This description of disability was central to my intervention in Auton at the Supreme Court of Canada, where I opposed autism advocates on both the parent side and the government side. In Auton, both sides consisted entirely of autism advocates, just as both sides, parents and governments, in the current supposed conflicts re ABA-based interventions are autism advocates. Neither side was or is now interested in providing autistics with genuine assistance so we can proceed safely and succeed in society; as I've written elsewhere, they agree entirely about what autistics are worth and how we should be treated. They are not interested in taking autism seriously. They are only haggling over whose unwanted burden we are.

The disability of autism is trivialized when it is claimed that when autistics are badly treated, harmed or neglected, the problem that has to be gotten rid of is autism (meaning, the existence of autistic people). This is a hallmark of autism advocacy: to insist that we need to be abused and mutilated (kept in restraints, our teeth pulled) in institutions; to deny that autistics are sentient, existent, human or alive; to call us a blight on society; to deny us even basic standards of science and ethics; then to flourish our resulting suffering and poor outcomes as evidence that autism is appalling and must be eradicated. Is this taking autism seriously?



References:

Keen, D. (2005). The use of non-verbal repair strategies by children with autism. Research in Developmental Disabilities, 26, 243-254.

Keen, D., Sigafoos, J. & Woodyatt, G. (2005). Teacher responses to the communicative attempts of children with autism. Journal of Developmental and Physical Disabilities, 17, 19-33.

Lovaas, O.I. (1979). Contrasting illness and behavioral models for the treatment of autistic children: A historical perspective. Journal of Autism and Developmental Disorders, 9, 315-323.

Lovaas, O.I . (2002) Teaching Individuals with Developmental Delays: Basic Intervention Techniques. Austin, TX: Pro-Ed.

Lovaas, O.I., & Smith, T. (1988). Intensive behavioral treatment for young autistic children. In B.B. Lahey, and A.E. Kazdin (Eds.), Advances in Clinical Child Psychology, 11. New York: Plenum Press.

Lovaas, O.I., & Smith, T. (1989). A comprehensive behavior theory of autistic children: Paradigm for research and treatment. Journal of Behavior Therapy and Experimental Psychiatry, 20, 17-29.

Thursday, February 15, 2007

Autism, a blight on society

In the House of Commons late last year, Liberal MP Blair Wilson made this statement re autistic children and "medically necessary" ABA/IBI:

For the child's humanity, treatment is necessary.

Then he said:

It is time Canada took action against autism, a blight on society. We must support this bill.

To ensure that no one has any cause to wonder if this was really what Mr Wilson meant to say, Mr Wilson highlighted this statement on his website--in large, bold letters:

It is time Canada took action against autism, a blight on society. We must support this bill.

"This bill" is Prince Edward Island Liberal MP Shawn Murphy's private member's bill C-304. This bill's main purpose is to alter the Canada Health Act to single out autism as a disease for which ABA/IBI is prescribed and mandated as "medically necessary" treatment. This bill has the effect of legislating physician-equivalent status for behaviour analysts, of legislating ABA/IBI as "medically necessary" for those diagnosed with Rett's, and of legislating all autistics as not only sick but "suffering". This will be the law. But back to Mr Wilson.

According to Mr Wilson, autistics who have not had "medically necessary" ABA/IBI from very early in life--in order to stop us from blighting society--have no humanity. Most autistics in Canada have not had ABA/IBI from an early age, for many reasons, including that we are too old. We grew up before ABA/IBI was easily or at all available. There are very likely at least 150,000 autistics in Canada who have not had early and unlimited ABA/IBI. That number exceeds the entire population of Prince Edward Island, including Shawn Murphy. Mr Wilson has stated that a group of Canadians more numerous than all Prince Edward Islanders do not have humanity and are therefore not human.

When I spoke with Mr Wilson's office, these statements of Mr Wilson's were vigorously defended. They are true, I was told, because FEAT says so.

FEAT--Families for Early Autism Treatment--recently stated in the Globe and Mail that autistics who do not undergo unlimited "medically necessary" ABA/IBI starting early in life must be institutionalized by the time we reach adolescence. We must live in restraints and have our teeth pulled.

The ethicist Margaret Somerville--who was not aware of FEAT's prominent recommendations--has recently written in the Globe and Mail,

May we redesign disabled people to make them easier to care for? They used to take out all the teeth of mentally ill people so they couldn't bite their caregivers, but we are rightly appalled by that now.

But no one is appalled or even raises an eyebrow when it is recommended that most autistics in Canada (a population larger than that of Prince Edward Island, including Shawn Murphy) be abused this way. Certainly not Mr Wilson, who forcefully supports and promotes FEAT. Mr Wilson has used his full power and influence to inform Canadians that most autistics in Canada are, unlike criminals and terrorists, not even human. We have no humanity. Those who are not human have no human rights. And those who have no human rights can be grossly abused with impunity. This is an experience shared by many of us.

Other Liberal MPs have had additional ideas about how to write off autistic Canadians who they see as blighting the country.

Ruby Dhalla has stated the Liberal Party of Canada position--a position shared by the Conservative government and the NDP--that ideally there would be no autistic people at all in Canada. In order to sensationally raise alarm about a "shocking" autism "epidemic", she has also rejected the broad scientific consensus that there has been a high, stable rate of autism. Instead, she insists that in 1996 and before, there were only 1 in 10,000 autistics. She and her office have repeatedly claimed that this figure, forcefully promoted by FEAT, is true, and further, that it comes from multiple expert researchers. Her "expert" autism epidemiology, a work of pure and absurd anti-scientific fiction, has the effect of eliminating the existence of more than 150,000 autistic Canadians--more than the entire population of Prince Edward Island, including Shawn Murphy. But Ms Dhalla does not care. She is sticking to her guns. She does not want most autistics in Canada to get any services at all, or even to be acknowledged. We don't exist--because she says so.

The supposed "debate" about Shawn Murphy's bill C-304 resumed yesterday. In this "debate", Liberal MP Brian Murphy stated that autism is

no less detrimental than the diagnosis of terminal cancer

and is therefore fatal if not treated. According to Brian Murphy, most autistic people in Canada are dead. We have not had the one "medically necessary" treatment he claims with absolute certainty is the only way to save us from our terminal disease.

The above statements represent the major achievements of autism advocacy in Canada. Autistics have officially been declared diseased, a blight on society, subhuman, actually and ideally non-existent, and dead. The organizations and individuals applauded for representing us demand that we be institutionalized, be kept in restraints, and be permanently mutilated if we don't sufficiently become normal. Not one of our federal parties, not one Canadian MP or Senator, has expressed even a whisper of protest against any of this.

Canada is officially a country which hates autism, and therefore hates the existence of autistic people. No fact will be permitted to get in the way of this hideous and irrational hatred. No genuine debate about autism, no genuine assistance for autistic Canadians, can emerge from this gratuitous, dangerous and unopposed outpouring of denigration and dehumanization.