Revisiting the costs of autism

Michael Ganz of Harvard has published two papers about the costs of autism, a book chapter in 2006 and a peer-reviewed paper in 2007. Media attention followed, including a 2007 Globe and Mail story under the headline "Autism a lifelong burden, study shows."

Dr Ganz's work was embraced by leading autism advocates in Canada, as evidence that unlimited ABA-based autism interventions must be funded by governments, or else staggering costs to society will ensue. Here is leading autism advocate Harold Doherty, writing in 2007 in response to Dr Ganz's work:

"In Canada the courageous parents who litigated the Connor Auton case started telling government over a decade ago that the financial burden to society down the road would be tremendous if early ABA intervention was not provided intensively right away and funded."

Here is Senator Jim Munson, leading autism advocate, as reported by CBC, also in 2007:

"Not providing ABA treatment is more expensive because it involves respite care, group homes and institutionalization, said Munson, who referred to a Harvard University study that put the annual cost of autism to Canada's economy at $3.5 billion."

Senator Munson again, from a 2007 speech:

"A recent study by Harvard University demonstrates that each child in the U.S. with autism will cost society about $3.2 million in medical and non-medical costs over his or her lifetime [1]. With the rising number of diagnoses of autism, the eventual costs will be staggering. We're in a situation where spending on treatment, even expensive treatment, is actually a savings."

The footnote [1] is to Dr Ganz's 2006 book chapter, and the sole treatment referred to by Senator Munson, as "proven to work," is ABA-based intensive intervention.

FEAT in Canada, which is also called "Medicare for Autism Now," is a powerful autism advocacy lobby group. FEAT demands that Lovaas-type ABA be mandated as medically necessary treatment for autism under the Canada Health Act. Here is FEAT in 2008:

"AUTISM is a North American health care epidemic of staggering proportions... The costs to the Canadian economy of NOT treating autism is $3.5 billion a year... the cost in human suffering is immeasurable."

While FEAT makes no direct reference to Dr Ganz's work, the $3.5 billion figure does not come from any existing Canadian study. According to the CBC, Senator Munson also used this figure and attributed it to Dr Ganz, and indeed this figure shows up in the Globe and Mail story about Dr Ganz's work that I referred to above. Dr Ganz's published work about the costs of autism does not make any mention of Canada, but Canada's leading autism advocates have apparently embraced an estimate based on Dr Ganz's US work and published only in a newspaper.

In any case, the premise of these leading Canadian autism advocates is the same. First, they use Dr Ganz's work as an occasion to unscientifically deny the existence of older autistics. Like many autism advocacy signature positions, this is an excellent way to ensure that many autistics will have very difficult lives and will be unlikely to have good outcomes. But Dr Ganz's work, if you read it, assumes a high, stable rate of autism.

Second, leading Canadian autism advocates cite Dr Ganz's work as evidence that government funding for ABA-based autism interventions is the only way to avoid the staggering costs of autism.

In the paper reporting his methodology, Dr Ganz does write about the costs of behavioural interventions for autism. From the "Behavioral Therapies" section of Ganz (2006):

"Although it is not completely clear how effective different types of behavioral interventions are for children with autism, it is rather well accepted that some type of intervention should be initiated. Because their use is becoming more pervasive and as more states are legislating that behavioral therapies become covered services as part of health insurance plans, their costs are included here."

Then Dr Ganz goes on to describe the possible benefits of these interventions:

"However, as the estimates of effectiveness, and hence the financial and nonfinancial benefits, are controversial and because the correspondence between improvement in symptoms and the costs of these interventions are not clear, only the costs of the intervention are enumerated here and are not offset by potential benefits."

Dr Ganz provides a range of references to support the above statements. The upshot is that according to Dr Ganz's model, existing evidence for the effectiveness of behavioural interventions in autism is insufficient for any conclusion that these interventions have benefits, financial or otherwise. Instead, there is only sufficient evidence to conclude that these interventions have costs. This is the model on which Dr Ganz's 2007 paper is based, as is directly stated in the paper.

So autism advocates who promoted Dr Ganz's work about the costs of autism in reality promoted a study whose author concluded that the effectiveness of ABA-based autism interventions has not yet been established, such that no benefits for this kind of intervention can be claimed. As often happens, the question arises as to whether autism advocates read the study and misrepresented it, or did not bother to read it and made public claims about it anyway. Those who are not enamored with autism advocacy standards, and who are genuinely concerned about the future of autistics, will take the trouble to read the primary sources and will draw their own conclusions.


References:

Ganz, M. (2006). The costs of autism. In S.O. Moldin & J.L.R. Rubenstein (Eds.), Understanding Autism (pp. 475-502). Boca Raton FL: Taylor & Francis.

Ganz, M. (2007). The lifetime distribution of the incremental societal costs of autism. Archives of Pediatrics and Adolescent Medicine, 161, 343-349

Verbatim: About autism severity

This episode of Verbatim finds autism researchers and clinicians wrestling in various ways with the (apparently) elusive concept of autism severity:

Note that in several cases, formal criteria for Autistic Disorder were met but a diagnosis of PDD-NOS or Asperger’s Disorder was given to the family. The reason for this was that the child had previously been given a diagnosis of PDD-NOS or Asperger’s and had continued to improve so that symptoms were fewer or milder than they had been. It was considered to be counterproductive to give the parents a more severe diagnosis when the child had actually shown significant improvement, and in many cases, the symptoms were present but in relatively mild form. (Kelley et al., 2006)

Indeed, in some ways, children with AS [Asperger syndrome] are more severe than those with autism as the discrepancy between their intellectual potential and their actual adaptation in terms of socialization and communication is so very marked; they look so "normal" but their behavior is so "odd." There is also some evidence that adolescents with AS have more symptoms of anxiety and depression than do children with autism (Szatmari et al., 1989), although the mechanism for this finding may only be that they have the ability to communicate their distress more readily. In this context, they have the more severe disorder because they have better communcation skills. It all depends on what dimension of severity one is talking about. (Szatmari, 2000)


References:

Kelley, E., Paul, J.J., Fein, D., & Naigles, L.R. (2006). Residual language deficits in optimal outcome children with a history of autism. Journal of Autism and Developmental Disorders, 36, 807-828.

Szatmari, P. (2000). Perpectives on the classification of Asperger syndrome. In A. Klin, F.R. Volkmar & S.S. Sparrow (Eds.), Asperger Syndrome (pp. 403-417). New York: Guilford.

Szatmari, P., Bartolucci, G., & Bremner, R. (1989). Asperger's syndrome and autism: Comparisons on early history and outcome. Developmental Medicine and Child Neurology, 31, 709-720.

The origins of ABA-based autism interventions

When it comes to behaviour analytic approaches to autism, the paper that started it all, and set the tone for what was to come, was Fuller (1949), the first published report of operant conditioning in a human being.

Fuller opens his paper by noting that classical conditioning had been tested in "normal and subnormal" humans. For example, it had been found that "subnormal" children formed conditioned responses to shock faster than "normal" children. But so far, operant conditioning had only been tested in animals ("infra-humans"). Fuller was given permission--no mention of by whom--to experiment on a person he described as an 18 year old "vegetative idiot" incarcerated in a "feeble-minded institution."

This person, referred to as "S," is reported never to move his trunk or legs, though no reason is given for this. According to Fuller, S had limited movement of his head, shoulders and arms, but couldn't roll over or change his position from where he was left lying on his back all day. S was never given solid food; liquids and semi-solids were "stuffed into his mouth," Fuller reports, while S coughed and choked. While Fuller writes that S never made any sounds, "in the course of the experiment vocalizations were heard."

Fuller's experiment started by depriving S of food for 15 hours. A syringe full of warm milk-sugar solution, which was squirted into the corner of S's mouth, was the reinforcer. A bit of this solution was given to S when he raised his right arm.

Eventually, S was conditioned such that after being deprived of food for five hours, he raised his right arm 19 times in 16 minutes. After this he fell asleep. The next morning, he raised his right arm and opened his mouth simultaneously. And while S had earlier also raised his left arm sometimes, by this point, he only raised his right arm.

Fuller declared success at this point, and then extinguished this response by removing the food reinforcer. The extinction procedure took 70 minutes, at which point S stopped raising his right arm. This completed the experiment.

Fuller wrote about S:

"An interesting feature of this study is the example it affords of phylogenetic overlap. While of normal human parentage, this organism was, behaviorally speaking, considerably lower in the scale than the majority of infra-human organisms used in conditioning experiments--dogs, rats, cats."

The physicians in the institution in which S had been an inmate (this word is used) for a year had reported to Fuller that S had not, in all his 18 years, learned anything at all. Fuller simply accepted this as true, even though he had no relevant information about S's history and minimal information about S's present. This allowed Fuller, and many behaviour analysts to follow, to be very impressed with what Fuller accomplished in conditioning S. After all, Fuller is reported to have trained a vegetative organism to move, a stunning and unprecedented achievement.

Along these lines, here is Fuller's conclusion:

"For years, many psychologists have experimented exclusively with infra-human [subjects], and they have expressed a preference for the simple, less variable behavior of the lower organisms in the laboratory. Perhaps by beginning at the bottom of the human scale the transfer from rat to man can be effected."

Fuller's "classic" paper, a landmark in the history of ABA, resonates with the much later words of Ivar Lovaas and his colleagues, about autistic human beings:

"You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense—they have hair, a nose and a mouth—but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person." (from an interview with Chance, 1974)

"In any case, what one usually sees when first meeting an autistic child who is 2, 3, or even 10 years of age is a child who has all the external physical characteristics of a normal child—that is, he has hair, and he has eyes and he has a nose, and he may be dressed in a shirt and trousers—but who really has no behaviors that one can single out as distinctively ‘human’. The major job then, for a therapist—whether he's behaviorally oriented or not—would seem to be a very intriguing and significant one, namely, the creation or construction of a truly human behavioral repertoire where none exists." (Lovaas & Newsom, 1976)

"To use another analogy, at the beginning of treatment, the children may be regarded as having close to a tabula rasa. In this sense they can be considered very young persons, as persons with little or no experience, presenting the teacher with the task of building a person where little had existed before." (Lovaas & Smith, 1989)

"Instead, the fascinating part for me was to observe persons with eyes and ears, teeth and toenails, walking around yet presenting few of the behaviors one would call social or human. Now, I had the chance to build language and other social and intellectual behaviors where none had existed, a good test of how much help a learning-based approach could offer." (Lovaas, 1993)

The currently predominant autism advocacy policy position that autistics can't learn, develop, communicate, progress, etc., or become human, except via ABA programs, reminds me of assumptions behaviour analysts have made about the nature of Fuller's S. They just know, like Fuller did, that S had never learned anything at all until Fuller came along. Fuller needed no evidence for this, or any information about S's past. He just knew there were subhumans in human form, including vegetative human organisms who were lower in the scheme of things than rats (and were treated as such). So all he had to do was to never, ever question any of this, and then go out and find one of these vegetative organisms and experiment on him. And so Fuller became famous, just like Dr Lovaas did later for "building" human behaviours in autistic children who he claimed had none at all, for "building" a person where he claimed none existed.


References:

Chance, P. (1974). "After you hit a child, you can't just get up and leave him; you are hooked to that kid": A conversation with O. Ivar Lovaas about self-mutilating children and why their parents make it worse. Psychology Today, 7, 76-84.

Fuller, P. R. (1949). Operant conditioning of a vegetative human organism. American Journal of Psychology, 62, 587-590

Lovaas, O.I. (1993). The development of a treatment-research project for developmentally disabled and autistic children. Journal of Applied Behavior Analysis, 26, 617-30.

Lovaas, O.I., & Newsom, C.D. (1976). Behavior modification with psychotic children. In H. Leiteberg (ed.), Handbook of Behavior Modification and Behavior Therapy. Englewoood Cliffs, NJ: Prentice-Hall.

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.

Autism in California: The MIND's new epidemiology

The MIND's recently published autism epidemiology (Hertz-Picciotto & Delwiche, 2009) has been widely publicized (press release is here, typical media story is here), with the upshot that large increases in reported rates of autism are real rather than apparent and should be studied as such.

Bloggers have taken on several aspects of the MIND's new autism epidemiology (here, here, here, here, with more and a summary here) as well as discrepancies between the paper itself and how it has been promoted. I'm going to add just a few more points to consider.

This isn't the MIND's first crack at epidemiology. Their previous highly publicized but unrefereed report, described as "A Comprehensive Pilot Study," was shown, in a refereed paper (Gernsbacher et al., 2005), to suffer from "unwarranted conclusions" about the effect of changes in how autism is diagnosed on reported rates of autism.

So what's new, this time around? Hertz-Picciotto and Delwiche use census data to account for migration into California, so as to generate what they call incidence (rather than prevalence) figures. Also, they've included individuals identified as autistic, for the purpose of receiving services, before age three.

But the basis for the MIND's new epidemiology remains the same: the California DDS data. Turning DDS figures into incidence data doesn't alter the problem that DDS-type administrative numbers should not be used as epidemiology. The pitfalls of using service-based numbers have been explored formally in the literature (e.g., Laidler, 2005; Gernsbacher et al., 2005) and expressed less formally by an NIH official:

"I'll call a kid a zebra if it will get him the educational services I think he needs."

Hertz-Picciotto and Delwiche's inclusion of children identified in service records as autistic before age 3 raises the problem that early diagnosis of autism may be very unstable. In Turner and Stone (2007), only 53% of children diagnosed autistic at an average age of 29 months kept their autism diagnosis at an average age of 53 months. Diagnostic instability was related to earliness of diagnosis (the earlier the diagnosis, the less stable it was) but unrelated to interventions received.

Like Hertz-Picciotto and Delwiche's conclusions about changes in diagnostic criteria (pulled from an unrelated Finnish prevalence study; Kielinen et al., 2000), their conclusions about effect of including other autistic spectrum diagnoses (Asperger's and PDD-NOS, which the authors presume are "milder cases") do not arise from the incidence data they report. Instead, figures were taken from an earlier paper involving a specific (much smaller and narrower) sample of children recruited to study environmental causes of autism (Hertz-Picciotto et al., 2006).

According to Hertz-Picciotto and Delwiche, their study involves children with the specific diagnosis of autism only. The authors refer to "an International Classification of Diseases (ICD) code of 299.0 (autistic disorder)" (except of course this is a DSM-IV, not ICD, code and category), while assuming that children diagnosed with other autistic spectrum diagnoses do not meet ADI-R or ADOS cut-offs for autism or ASD (ADI-R has autism cut-offs only). This, the premise of the authors' analysis re what they presume to be "milder cases," doesn't stand up well to scrutiny.

For example, in Baird et al. (2006), 69% of children with non-autism autistic spectrum diagnoses met autism criteria on the ADI-R. This doesn't count Asperger children, who were lumped in with autistic children, virtually all (98%) meeting ADI-R autism criteria. In work I'm involved in, virtually all Asperger individuals (as virtually all autistics) meet all ADI-R and ADOS cut-offs for autism.

Also, in using the ADOS (which has, more recently, been revised again) and ADI-R, as well as clinical experience, Baird et al. (2006) produced a range of prevalence figures for children aged 9-10, from ~25/10,000 to ~116/10,000. That's a 4.6-fold discrepancy in the same sample at the same time with the same instruments and the same group of diagnosing clinicians.

Maybe there are other ways of exploring whether children receiving DDS autism services in the past are similar to children receiving these services more recently. In their unrefereed 2002 report, the MIND compared subsamples of children born from 1983 to 1985 with children born from 1993 to 1995. In the earlier subsample, 61% were judged to be in the range of intellectual disability, whereas in the later subsample, 27% were--a discrepancy noted by Gernsbacher et al. (2005).

More data about the entire population receiving DDS autism services are available. In a 1999 DDS report, graphed data show that whereas in 1987, ~84% of those receiving DDS autism services were judged to be in the range of intellectual disability, by 1998 that figure was 58%. A further look at DDS quarterly reports shows that by the beginning of 2002, that figure was 42%, and by the end of 2007 it was 33%. Between 1987 and 2007, the proportion of individuals receiving DDS autism services and scoring in the severe and profound ranges of intellectual disability dropped from ~36% to ~6%.

So--there are a few more reasons to question Hertz-Picciotto and Delwiche's conclusions about the effect of differences in how autism is defined and diagnosed. Also, there are many reasons to question the whole enterprise of trotting out DDS numbers yet again and pretending that, with enough distracting decorations stuck on, they in fact are epidemiology. After all, Hertz-Picciotto and Delwiche are denying the existence of older autistics, and they are doing this by using poor quality data dressed up in definitive conclusions. I would be much more cautious than Dr Hertz-Picciotto and her university have been, in going out in public wearing the MIND's new epidemiology.


Reference:

Irva Hertz-Picciotto, Lora Delwiche (2009). The Rise in Autism and the Role of Age at Diagnosis Epidemiology, 20 (1), 84-90 DOI: 10.1097/EDE.0b013e3181902d15

Where are the autism researcher bloggers?

Of course there are bloggers blogging about autism, everywhere, in staggering if not epidemic numbers. But my question is about bloggers who are also autism researchers. Where are they?

Prominent academics, scientists and researchers who blog aren't hard to find, including Nobel and Fields Medal winners, major journal editors, and clumpings together of well-known figures in various areas of research. You can't go far in Science Blogs without colliding with NIH-funded researchers in various non-autism fields.

And there are many bloggers who blog about autism research, including researchers, clinicians and academics in non-autism areas. But I'm looking for autism researchers who blog, about any subject, but particularly about autism research. For my blog-searching purposes, "autism researchers" are those whose main field of research is autism and whose autism-related work has been published in peer-reviewed journals.

Apart from me, there is the postdoctoral fellow Lindsay Oberman, who sporadically blogs at Psychology Today. Back in 2006, New Scientist published a letter I wrote in response to an informal article authored by Dr Oberman. Michael Merzenich has been in the authorship of a few autism-related papers and also has a blog, but he has extensively published in non-autism areas and is not primarily known as an autism researcher.

The Hub blogger and behaviour analyst Interverbal promises to cough up some published research some day, for which I'm impatiently waiting. There are now other behaviour analysts who blog about autism, but those I have located are service providers, rather than researchers.

In the remarkably science-and evidence-free vaccines-cause-autism camp, there's Mark Blaxill, known for calling autism a "silent holocaust." Mr Blaxill has been in the authorship of a few published papers, and is the sole author of a 2004 review in which he beautifully demonstrated--without in the least noticing--that amount of thimerosal in routine childhood vaccinations is totally unrelated to prevalence of autism. Autism Diva was kind enough to give me the space to point out the obvious. Mr Blaxill blogs with his ilk at "Age of Autism," but who would call him an autism researcher?

So where are they, the autism researcher bloggers, and if there really are so few of us, why might this be? There is no shortage of researchers in the area of autism, and autism has been a high profile field for longer than there have been blogs. I've limited my blog reading to English-language blogs, and I've left out individuals who are involved in autism research but who haven't yet published any of this research in the peer-reviewed literature. So maybe my criteria are too limited. But where are--for example--any of the numerous well-known autism researchers I've seen at IMFAR year after year? Why aren't any of them bloggers? Can anyone point me to more autism researcher bloggers?

Do you copy? Autism advocacy standards strike again (a brief note in passing)

Doreen Granpeesheh is a well-respected Board Certified Behavior Analyst who "serves on the Defeat Autism Now (DAN!) Executive Council," works at Andrew Wakefield's Thoughtful House, is on Autism Society of America's Board of Directors, and has won ASA's highest award. ASA is part of a collaboration of organizations which agree that there has been an epidemic of autism caused at least in part by vaccines.

Dr Granpeesheh is executive director of CARD (Center for Autism and Related Disorders), a high-profile organization which provides ABA services. CARD has recently started a blog, which apparently has gotten rave reviews from leading Canadian autism advocates (you know where to find them...). Of the few CARD blog posts I read, two gave me déja vu.

One is about ABA (see also the CARD website), and the other is about autism (see also the CARD website). Just at a glance, chunks of this writing are taken, without attribution, from the unrefereed MADSEC report, published in 2000. I also spotted an unattributed piece from the US Surgeon General's report, released in 1999. And that's only at a glance, which is all the time this is worth.

As I briefly showed in a presentation this year, pieces of the MADSEC report have often been copied without attribution, including by behaviour analysts--a practice that continues up to the present. So it seems those frequently copied, but infrequently attributed, "30 years" and "several thousand published research studies" that have "documented the effectiveness of ABA" haven't budged an iota in a decade. The MADSEC report covers papers published up to 1998; among those "several thousand published research studies," which sadly are not listed, not one single RCT of ABA-based autism interventions is cited.

Failing to attribute copied chunks of text may result in applause from leading autism advocates, and for all I know it may be good for business. But in my view, if you are going to copy someone else's writing, and put it on your website or blog, it's a very good idea to provide the source for this writing rather than passing it off as your own. This is true even if copyright is not an issue, and even if you have permission to copy someone else's work.

(This brief note is more like a TMoB message, but the TMoB board has gotten cranky about posts with more than a few links. If I've made any factual errors, I hope someone corrects me.)

An assortment of 2008 autism papers

Here's a handful of interesting autism-related papers published in 2008, ranging across scales and subjects:

1. Autism and speech: Gernsbacher et al. (2008)

Why can't some autistic children speak? The remarkably few existing explanations for this high-profile phenomenon have collapsed under scrutiny. This embarrassing failure on the part of autism researchers was, at long last, addressed in 2008. Dr Gernsbacher and colleagues found "prominent associations among early oral- and manual-motor skills and later speech fluency" in a large sample of autistic children, who ranged from highly to minimally fluent. Early oral-motor skills are therefore crucial in explaining why some autistic children can't speak. What's more, associated manual-motor skills should be considered a confound in "assessing autistic cognition, receptive language, and ‘nonverbal’ social communication."

2. An effective intervention: Tyrer et al. (2008)

This was a multi-site RCT of three different interventions targeting "aggressive challenging behaviour" in intellectually disabled adults, a minority of whom were autistic. The authors found that haloperidol, risperidone, and placebo all resulted in rapid, dramatic and sustained decrease in the targeted behaviours. And while "no important differences between the treatments were recorded," after four weeks of treatment, "the greatest decrease was with placebo." The conclusion? "Antipsychotic drugs should no longer be regarded as an acceptable routine treatment for aggressive challenging behaviour in people with intellectual disability."

3. Absolute pitch for speech: Heaton et al. (2008)

In the past two years, Pamela Heaton and her colleagues have published a series of papers about enhanced perception of speech in autism. This case study goes a step farther in showing exceptional absolute pitch for speech in an autistic adult, AC, who has had little musical training. The authors found that "AC's naming of speech pitch was highly superior" compared with nonautistic controls who had absolute pitch--many of whom had extensive musical training. While delayed in his development of speech, AC had gone on to be competent in numerous languages. This calls into question the ubiquitous assumption that enhanced processing of perceptual aspects of speech in autistics can only be detrimental to what are regarded as much more important language abilities.

4. Unsung autism epidemiology: Williams et al. (2008)

Autism epidemiology tends to get a lot of media coverage, but this UK study, whose methodology resembles the much-publicized 2007 CDC epi studies, somehow got overlooked. Within "a large representative population sample" the authors found a prevalence of autism ranging from 51.5/10,000 (using more stringent standards) to 61.9/10,000 (using more relaxed standards). That's 1 in 194 to 1 in 162, strikingly lower than the 1 in 86 reported in a famous 2006 UK study involving a slightly older cohort. Within this sample, less than 15% were assessed to be in the range of intellectual disability, with this proportion falling to 13% for those with the specific diagnosis of autism (a higher rate, 27%, was found in those diagnosed with "atypical autism"). Also, having an autistic child was not associated with paternal age (a hot subject these days), and was only slightly associated with maternal age. Clearly, these are not the kinds of findings that attract the media, or autism advocates who produce press releases.

5. Rational autistics, irrational researchers: De Martino et al. (2008)

This paper gets both honourable and dishonourable mention. The study itself was a great idea, well-executed with important and fascinating findings. Autistics were shown to perform with enhanced logical consistency, avoiding irrational and irrelevant biases that distorted decision-making in their nonautistic controls. However, autistics' enhanced performance in this study was interpreted by the authors as a litany of autistic failures, imbalances, impairments, deficits, reduced capacities, weaknesses, and impoverishments (several invocations of some of these), none of which were actually found. The authors concluded that they have discovered a "core neurobiological deficit" in autistics. In years to come, we can look forward to interventions designed to overcome this core autistic deficit and to ensure that autistics become as irrational as nonautistics.


References:

De Martino, B., Harrison, N.A., Knafo, S., Bird, G., & Dolan, R.J. (2008). Explaining enhanced logical consistency during decision making in autism. Journal of Neuroscience, 28, 10746-10750.

Gernsbacher, M.A., Sauer, E.A., Geye, H.M., Schweigert, E.K., & Goldsmith, H.H. (2008). Infant and toddler oral- and manual-motor skills predict later speech fluency in autism. Journal of Child Psychology and Psychiatry, 49, 43-50.

Heaton, P., Davis, R.E., & Happé, F.G. (2008). Research note: Exceptional absolute pitch perception for spoken words in an able adult with autism. Neuropsychologia, 46, 2095-2098.

Tyrer, P., Oliver-Africano, P.C., Ahmed, Z., Bouras, N., Cooray, S., Deb, S., Murphy, D., Hare, M., Meade, M,, Reece, B., Kramo, K., Bhaumik, S., Harley, D., Regan, A., Thomas, D., Rao, B., North, B., Eliahoo, J., Karatela, S., Soni, A., & Crawford, M. (2008). Risperidone, haloperidol, and placebo in the treatment of aggressive challenging behaviour in patients with intellectual disability: A randomised controlled trial. Lancet, 371, 57-63.

Williams, E., Thomas, K., Sidebotham, H., & Emond, A. (2008). Prevalence and characteristics of autistic spectrum disorders in the ALSPAC cohort. Developmental Medicine and Child Neurology, 50, 672-677.

Verbatim: Three conclusions about autism interventions

Five papers published or epublished so far in 2008, along with a sixth which has sat in press all year, have in one way or another reviewed the ABA group designs, sometimes alongside other approaches to autism.

The solitary RCT (where the intended comparison between randomized groups was actually carried out) in the 47-year history of ABA-based autism interventions--a small, largely failed study--is now drowned in an enormous murk of systematic, quasi-systematic, and not-systematic-at-all reviews. At this point in autism and autism advocacy history, no one should be surprised that this phenomenon encompasses dueling meta-analyses.

As with every other Verbatim, providing quotes doesn't mean I agree with them or the papers they are situated in. Here are quotes from the conclusions of three of the 2008 reviews:

Intervention studies suffer from methodological problems that preclude definitive conclusions regarding their efficacy. [...] While this review suggests that Lovaas may improve some core symptoms of ASD compared to special education, these findings are based on pooling outcomes from a few, methodologically weak studies with few participants and relatively short-term follow-up. [...] Future studies on the effectiveness of these interventions need to be more rigorous. (Ospina et al., 2008)

Given the few RCT studies, the few models that have been tested, and the large differences in interventions that are being published, it is clear that the field is still very early in the process of determining what kinds of interventions are most efficacious in early autism, the variables that mediate and moderate treatment effects, and the degree of both short-term and long-term improvement that can be expected for an individual child. (Rogers & Vismara, 2008)

Currently there is inadequate evidence that ABI [applied behavioral intervention] has better outcomes than standard care for children with autism. Appropriately powered clinical trials with broader outcomes are required. (Spreckley & Boyd, in press)

References:

Ospina, M.B., Krebs Seida, J., Clark, B., Karkhaneh, M., Hartling, L., Tjosvold, L., Vandermeer, B., & Smith, V. (2008). Behavioural and developmental interventions for autism spectrum disorder: a clinical systematic review. PLoS ONE, 3:e3755.

Rogers, S.J., & Vismara, L.A. (2008). Evidence-based comprehensive treatments for early autism. Journal of Clinical Child and Adolescent Psychology, 37, 8-38.

Spreckley, M., & Boyd, R. (in press). Efficacy of applied behavioral intervention in preschool children with autism for improving cognitive, language, and adaptive behavior: A systematic review and meta-analysis. Journal of Pediatrics.

When did the autism crisis start?

According to my dictionary (The New Penguin English Dictionary, 2000), a crisis is "a time of acute difficulty or danger, esp on a national or international scale."

The autism crisis was created by autism advocates. Thanks to autism advocacy, the existence of autistics is now widely regarded and treated as a devastating epidemic--as posing a great and immediate threat to families, communities, the economy, and society as we know it.

Crisis creation has been one of autism advocacy's greatest achievements. Public policy is based on this crisis model of autism, in which virtually all autistics are young children who must be saved from the abyss of autism right now in order to save the future of society itself. Because the heroic effort to save autistic children from autism has been and continues to be costly (in many ways), public policy also now often encompasses the ideal that autism should be prevented.

In this autism-advocacy-created autism crisis, older autistics exist only in the future, as a looming danger to the public good. Unless there is funding for unlimited ABA, autism advocates threaten that an unprecedented epidemic of autistic children will grow up autistic--which means doomed (in fact, rotten), and large, violent and destructive, and institutionalized and horribly expensive. The fact that older autistics, the vast majority of whom have not been in ABA programs starting early in life, have not already destroyed the economy is just proof that we don't actually exist.

So one question is, when did autism advocates start this autism crisis? Or in other words, how long has this autism crisis been going on? I'd like to know. In a quick look-round, the earliest declaration of an autism crisis I found comes from Cure Autism Now. CAN claimed there was an autism crisis starting in 2000, or more than eight years ago:

"Today, autism is a national crisis affecting over 400,000 families and costing the nation over 13 billion dollars a year. According to recent studies, as many as 2 in every 1000 children born today will be on the autistic spectrum."

In 2002, Lee Grossman, President and CEO of Autism Society of America, declared that "autism is an emergency, and it is a national health crisis."

In the UK, the Guardian declared an autism crisis in 2002, and described autistic children as a "timebomb building in UK schools."

A "Canadian autism crisis" was declared by Autism Society Canada in 2001, or more than seven years ago. ASC has not at any time declared an end to this autism crisis. Indeed, in 2005 and 2006 this autism crisis was "growing" and currently, according to an ASC advisor (who cites a TV program, "The View," as his source), autism is definitely still a crisis.

CAN's successor, Autism Speaks, currently disseminates the claim that autism is "a national public health crisis" on every Autism Speaks press release (this one is about new Autism Speaks board members, none of whom is identified as autistic: autistics, autistics everywhere, and not a single autistic on the board, or anywhere else in Autism Speaks' leadership).

So apart from asking when this autism-advocacy-created autism crisis started, seeing as it has continued for more than eight years, another question is, when will it end? Or will it end? After all, creating and perpetuating an autism crisis is a piece of cake. Autism advocates have successfully placed themselves above scrutiny and criticism, such that none of their false claims, no matter how contradictory or outlandish or extreme, never mind harmful to autistics, is ever questioned.

Testifying in the senate some time ago, I pointed out the obvious: autism advocates have been very successful in their perpetual autism crisis creation. So it is difficult to imagine any amount of resources and recognition that would satisfy autism advocates and their demand for a world as free of autism--of autistic people--as possible. It is unlikely that Canada or any other country has enough resources to meet the urgent and constant demands of autism advocates.

My wild guess is that so long as there are autism advocates, and so long as they dominate public policy and the public discourse about autism, there will continue to be an autism crisis. And this crisis--which is really an autism advocacy crisis--will continue to stand in the way of autistics having good outcomes.

Addendum: Many thanks to a reader who passed along some evidence that the autism crisis was first declared in 1999. See this, this, and this.

[Conflict of interest declaration: I'm affiliated with a research group which receives funding from Autism Speaks, among other funding sources.]

Autism advocacy standards, ABA, and challenging behaviours

Murphy et al. (in press) is a recently epublished paper about so-called challenging behaviours in autistic children.

In this study, 106 autistic children (mean age 8.5yrs, range 3-14.2yrs) were receiving intensive (27-35hrs/wk) one-on-one ABA-based interventions (the ABA school group), while 51 children received "eclectic" non-ABA autism-specialized services (27-30hrs/wk; the ASD unit children).

Some of these children (109) were judged to be in various ranges of intellectual ability, but this information was gathered by questioning individuals who worked with the children and was not verified in any way. Similarly, there is no information about these children's diagnoses, beyond that they were "children with autism spectrum disorder," and for seven children, even their age was unknown.

All 157 autistic children's challenging behaviours were assessed through a version of the Behavior Problems Inventory (Rojahn et al., 2001; Murphy et al., in press, take their description of this instrument nearly verbatim from this earlier paper). This instrument involves interviewing informants (rather than direct observation) and divides challenging behaviours into three categories: stereotypy, self-injury, and aggression.

Regardless of the reasonable sample size, this study's authors chose to organize their data in ways that made many statistical comparisons useless. There is a clear trend, though, if you slog through what information they do provide. This is summarized in the discussion, about comparisons between children in the ABA school group and children in the non-ABA ASD unit group:

With regard to the type of intervention received being a risk factor, findings show that the type of intervention is not related to the prevalence of challenging behavior. However, in relation to participants receiving an ABA intervention, they displayed a higher frequency of stereotypy and also showed higher levels of aggression.

If I adhered to autism advocacy standards, I could simply repeat some or all of this excerpt endlessly as some kind of "proof" of what intensive ABA programs accomplish.

But the first sentence in the quote above is not supported by the authors' analyses. The other sentence is accurate in the sense that what is claimed can be traced to statistical comparisons that were actually carried out.

However, these statistical comparisons are within the context of a very poor quality study where the findings, even within the given highly questionable parameters (e.g., definitions of challenging behaviours that, among many other limitations, encompass presumed mental states) are virtually impossible to interpret.

Available data that might assist in interpreting the findings are simply not reported (e.g., demographics of the two different intervention groups). But even were the data better reported, this study is based on an very poorly characterized sample (poor characterization being the standard in the vast ABA literature), and one that according to what scant information is provided, is not representative of autistic children in general.

Indeed, an inventory of the errors (some of them instantly obvious) and major weaknesses in this paper would be lengthy and would include, somewhere down the list, the authors' contention that ABA must have been effective in their study in reducing challenging behaviours in autism because, well, ABA is effective.

This paper was accepted (within two days of being submitted) by an autism journal edited by a famous behaviour analyst. In my view, in its epublished form, this paper contributes nothing reliable or worthwhile to autism research.

What is worthwhile, though, is the reminder that quality and standards matter. The selective reading and promotion of research of overwhelmingly poor quality is central to autism advocacy--is one of its signatures. Autism advocates have successfully insisted that poor quality research is what autistics deserve.

But poor quality research can be selectively invoked to support any position, as I've pointed out here. For example, the low/no standards of science and ethics that autism advocates have imposed on autistics have led to public funding for RDI. But pushing poor standards and poor quality research is not going to lead to better outcomes for autistics. Claiming otherwise, as autism advocates loudly do, harms autistics.


References:

Murphy, O., Healy, O, & Leader, G. (in press). Risk factors for challenging behaviors among 157 children with autism spectrum disorder in Ireland. Research in Autism Spectrum Disorders.

Rojahn, J., Matson, J.L., Lott, D., Esbensen, A.J., & Smalls, Y. (2001). The Behavior Problems Inventory: An instrument for the assessment of self-injury, stereotyped behavior, and aggression/destruction in individuals with developmental disabilities. Journal of Autism and Developmental Disorders, 31, 577-588.

Even more Autism Speaks epidemiology

In a May 2005 press release, Autism Speaks announced that there are "nearly 2 million people in the United States living with autism." More than three and a half years later, Autism Speaks claims that "1.5 million Americans may be affected with autism."

You would think that given their goals, Autism Speaks would be celebrating the reported--by Autism Speaks--disappearance of ~500,000 autistics in less than four years. But remarkably, this reported dramatic decline in number of autistics is instead considered by Autism Speaks to represent "a national public health crisis" and a "global epidemic of autism." What's more, Autism Speaks currently reports that

"the rate of autism is rising 10-17 percent annually. Unfortunately, the numbers appear to be continuing their upward climb."

Autism Speaks' epidemiology is characterized by two overlapping themes. One is an absurdly dishonest and contradictory reporting of the easily-available evidence. The other is a pervasive disrespect for autistics, whose lives Autism Speaks expediently and anti-scientifically denies.

In a previous post, I quoted a sentence that graces every Autism Speaks press release. Here it is again:

The prevalence of autism has increased tenfold in the last decade.

In this one widely-distributed sentence, Autism Speaks grossly misrepresents the scientific literature; rejects the scientifically sound position that there has been a high, stable rate of autism; and wipes out the lives of 90% of autistics who existed more than 10 years ago.

But this is still not sufficient for Autism Speaks' political purposes. Here are some more Autism Speaks statements about the prevalence of autism:

February, 2006: "a decade ago... 1 in 10,000"

March, 2006: "1 in 10,000 just 13 years ago."

April 6, 2006: "Thirteen years ago only 1 in 10,000"

March, 2007:"1 in 10,000 -- it was 13 years ago"

April, 2007: "Fourteen years ago only 1 in 10,000"

May, 2007: "it was 1 in 10,000 just 13 years ago"

May, 2007: "13 years ago, 1 in 10,000"

November, 2007: "1 in 10,000 just fourteen years ago"

In these statements, Autism Speaks is--at least--also erasing the lives of more than 98% of autistics who existed more than 14 years ago.

While any calculation is of necessity very approximate, if the epidemiology Autism Speaks widely disseminates is taken seriously, then public policy decisions would be based on there being not many more than 300,000 autistics in the US, of whom the vast majority (~270,000) would be young children. A very small number (~14,000) would be older children, and there would be very few (~22,000) autistic adolescents and adults.

And of course this is in total contradiction with Autism Speaks' claim that "1.5 million Americans may be affected with autism." Meanwhile, a science-based estimate would be 2 million autistics in the US, of whom about 500,000 are children (the number of autistic children, ages 0-21, in the US is estimated by the CDC to be 560,000).

In the 2007 UN resolution about World Autism Awareness Day, a resolution heavily influenced by Autism Speaks, virtually all autistics are presumed to be children (see also this message). There is no mention of autistic adults, just the "high rate of autism in children," and that autism is a disability "mostly affecting children."

Autism Speaks' autism advocacy message is getting around the world: autistics don't deserve the protection and benefit of even minimal standards of science, ethics, and advocacy; and older autistics do not exist and need not be considered.

[Conflict of interest declaration: I'm affiliated with a research group which receives funding from Autism Speaks, among other funding sources.]

Verbatim: Autism advocacy rules

This Verbatim is from a 2003 JAMA editorial by Eric Fombonne, in which he is writing about "claims about an epidemic of autism and its putative causes." More generally, this quote highlights the pervasive success of autism advocacy in imposing the lowest possible standards of science and ethics on autistics:

Yet, ironically, what has triggered substantial social policy changes appears to have little connection with the state of the science. Whether this will continue to be the case in the future remains to be seen, but further consideration should be given to how and why the least evidence-based claims have achieved such impressive changes in funding policy.

Reference:

Fombonne, E. (2003). The prevalence of autism. JAMA, 289, 87-89.

ABA success stories

Gender disturbed children desperately need treatment.

This quote is from Rekers, Bentler, Rosen & Lovaas (1977). It concludes one of multiple peer-reviewed articles authored by prominent researchers, defending a highly successful early intensive ABA-based treatment (see also Rekers, 1977; Rosen, Rekers & Bentler, 1978; Rekers, Rosen, Lovaas & Bentler, 1978). This treatment was part of the UCLA Feminine Boy Project, which for some time ran concurrently with the UCLA Young Autism Project. Its unprecendented success in treating what was considered to be an intractable pathology was reported by NIH-funded UCLA researchers in peer-reviewed journals (Rekers & Lovaas, 1974; Rekers, Lovaas & Low, 1974). One of the stated purposes of this treatment was to "cure" or "prevent" homosexuality.

The UCLA researchers repeatedly wrote that the young boys targeted by their early intensive ABA-based treatment suffered terribly and were in pain. At all possible levels (physical, emotional, economic, social, etc.), their prognosis was described as "extremely poor" with a high risk of criminal, anti-social and self-destructive behaviour. Their future was one of "numerous crippling difficulties" and "pain, misery and despair" (all quotes from Rekers et al., 1977).

Then there were the parents of these reportedly severely disordered children, parents whose needs, values and goals were considered paramount. Therefore, according to the UCLA researchers, there was a "moral and ethical obligation" to intervene and provide a treatment which had been demonstrated to be effective. The fundamental purpose of this behavior analytic treatment was, they wrote,

to help children whose present and future is so filled with hardship that it would be clearly unethical not to render them professional help. (Rekers et al., 1977)

One of the desperate children who was successfully treated, starting at age 4 (his treatment is described in Rekers & Lovaas, 1974), and who therefore became "indistinguishable" from boys judged to be normal and healthy, was interviewed at length when he was 17 and 18. Here are some excerpts from these interviews (in which he is called "Kyle"), conducted by Richard Green ("RG") and published in Dr Green's book (Green, 1987):

RG: The kind of feeling you had tonight with this guy who was looking at you and made you feel uncomfortable--what other times has that happened to you?

Kyle: I suppose I've been overly sensitive when guys look at me or something ever since I can remember, you know, after my mom told me why I have to go to UCLA because they were afraid I would turn into a homosexual.

.....

RG: I'm sure you're aware that there's a lot of social controversy about homosexuality and whether homosexuals should be allowed to be schoolteachers, should hold public office, have equal opportunity for jobs, housing, the whole civil rights question. How to you feel about that issue?

Kyle: I don't think they should because--well, I believe in God and everything and I think it's a pretty bad thing, and I think that they should try to be helped by whatever, but I think it is pretty bad, and I don't think they should be around to influence children, 'cause children are pretty easy to influence, little kids.

RG: Are you saying that homosexuality is sinful?

Kyle: I suppose it is. I don't think they should be hurt by society or anything like--especially in New York. You have them that are into leather and stuff like that. I mean, I think that is really sick, and I think maybe they should be put away.

.....

RG: When did you first have a crush on another male?

Kyle: Probably when I was in seventh grade.

RG: What do you remember about the first crush?

Kyle: I didn't like what was happening.

RG: Did it scare you?

Kyle: It did.

RG: Did it surprise you?

Kyle: Not really.

RG: Why not?

Kyle: Because I had been through all the UCLA stuff and all that. So I knew.

RG: Why should the UCLA stuff--?

Kyle: Well, because that was the reason for me to go, so I wouldn't be gay.

.....

(about his first homosexual encounter at age 18)

Kyle: It wasn't like I was real. And afterwards, a few weeks later, I tried to kill myself.

RG: Tell me about that.

Kyle: I swallowed about fifty aspirins.

RG: Did you really want to die?

Kyle: I think I really wanted to, but I knew I wasn't going to. But I really did want to.

RG: Why?

Kyle: Because I don't want to grow up to be gay.

RG: How strong an influence on your thinking is religious feeling?

Kyle: Not really strong, I don't think. It's pretty strong, but it's more me. I don't want to be that way. But religion is pretty strong too. Because I know it's wrong.

RG: Do you feel it's sinful?

Kyle: Yes.

RG: I'm not sure if I understand whether it's the idea of being gay or the idea that gay people don't live happy lives that's even more--

Kyle: I think it's both.

RG: It's both.

Kyle: Even if I was gay, I might feel happy and everything, but I know, I would know that it is wrong. I know it would be.

Kyle also states that he would have become a "total basket case" if he had not undergone treatment at UCLA. Asked what he would do if one day he was a father and had four year old boy with feminine behaviours, Kyle stated that he would take this child to a place like UCLA for treatment.

In the same book, Kyle's mother was interviewed and expressed how thankful she was for the early intensive ABA-based treatment which changed her son's behaviour.

The other young boy, Carl, whose successful ABA-based treatment was reported in the literature, also commented favourably (at age 12) on the treatment he received and its results. From Rekers, Lovaas, and Low (1974):

After our behavioral treatment, the two independent psychologists could find no evidence of feminine behavior or identification in Carl's test responses or interview behavior. Not only have family and friends remarked on the change in Carl, but he himself volunteered that he "used to be a queer, but not anymore." The treatment has clearly changed Carl's overt gender-related behaviors, suggesting that his sex-role development may have become normalized.

This was in an era where "queer" was an unambiguously pejorative word. Carl's parents were also reported to be satisfied; his mother was "pleased."

So by all reports, this early intensive ABA-based treatment was a great success for everyone involved. Everyone was reported to be happy about it--the parents who wanted treatment for their children, the boys who underwent treatment, and the behaviour analysts who provided the treatment.

And here again are the original UCLA researchers and their powerful defence of their successful ABA-based treatment:

For example, it has been suggested that the only appropriate goal of the psychotherapist dealing with a homosexual individual is to help him adjust to his homosexual orientation and behavior. Some critics go so far as to suggest that a referral to a "Gay Counseling Center" is even more appropriate, with the goal of placing the individual in contact with others like himself. We find this line of argument to be totally unacceptable and irresponsible. (Rekers et al., 1977)

And:

The non-neutrality of "gay counseling" imposes further limitations on the individual's growth potential, and unnecessarily sanctions a debilitating pattern of personal adjustment. (Rekers et al., 1977)

That is, any action in any direction suggesting acceptance of homosexuality was deemed harmful and unethical.

The world would be quite different now, would be comprehensively narrowed and impoverished, if an equivalent to current-day autism advocacy had prevailed, if this reportedly successful ABA-based treatment had not been derailed by serious criticism, including from the legendary behaviour analyst Donald M. Baer (Nordyke et al., 1977). In some of the most important, and most forgotten, writing in the behaviour analytic literature, Dr Baer and his colleagues made this statement:

The final reason for treatment was that the boy's parents were concerned. If a therapist takes only this point into consideration, then the therapist has become the parents' agent, rather than the child's, or society's. Can the therapist justify that short-sighted a role? What are the consequences for the field, and for society, if that were to become common practice? It is difficult for a therapist to be fully aware of all the issues involved when changing behaviors defined not by the person whose behavior is in question, but by other agents, such as parents or courts. This is especially true when treatment is not done by request of the person being treated. In such situations, it may be important and prudent for the therapist to seek out other people who may be more aware of the various issues involved. [...] [I]f therapists are to gain confidence in the ethics of their treatment, they should guard against treatment that unsophisticatedly threatens diversity in society. (from Nordyke et al., 1977)

[For more information about the UCLA Feminine Boy Project, see this article about ABA-based autism interventions. Ivar Lovaas' work with feminine boys was also mentioned in my Auton written argument.]


References:

Green, R. (1987). The "Sissy Boy Syndrome" and the development of homosexuality. New Haven: Yale University Press.

Nordyke, N.S., Baer, D.M., Etzel, B.C., & LeBlanc, J.M. (1977). Implications of the stereotyping and modification of sex role. Journal of Applied Behavior Analysis, 10, 553-57.

Rekers, G.A. (1977). Atypical gender development and psychosocial adjustment. Journal of Applied Behavior Analysis, 10, 559-71.

Rekers, G.A., Bentler, P.M., Rosen, A.C., & Lovaas, O.I. (1977). Child gender disturbances: A clinical rationale for intervention. Psychotherapy: Theory, Research and Practice, 14, 2-11.

Rekers, G.A., & Lovaas, O.I. (1974). Behavioral treatment of deviant sex-role behaviors in a male child. Journal of Applied Behavior Analysis, 7, 173-90.

Rekers, G.A., Lovaas, O.I., & Low, B. (1974). The behavioral treatment of a "transsexual" preadolescent boy. Journal of Abnormal Child Psychology, 2, 99-116.

Rekers, G.A., Rosen, A.C., Lovaas, O.I., & Bentler, P.M. (1978). Sex-role stereotypy and professional intervention for childhood gender disturbance. Professional Psychology, 9, 127-136.

Rosen, A.C., Rekers, G.A., & Bentler, P.M. (1978). Ethical issues in the treatment of children. Journal of Social Issues, 34, 122-36.

More Autism Speaks epidemiology

Since last I wrote about Autism Speaks' epidemiology, two changes have been made on Autism Speaks' website. See here and here, compare to original versions here. No other changes were made, and Autism Speaks has recently elaborated on their epidemiology in press releases and the media. So it's possible to sum up Autism Speaks' epidemiology:

1. current prevalence of autism in the US is 1 in 150;

2. 10 years ago, prevalence was 1 in 1500 (as stated on all of Autism Speaks' press releases);

3. the "rate of autism is rising 10-17 percent annually. Unfortunately, the numbers appear to be continuing their upward climb";

4. there is an "epidemic" of autism, and this is a "recent epidemic";

5. because the autism epidemic is recent, older autistics do not exist; and

6. there are 1.5 million autistic people, total, in the US.

Given this array of information, the question remains as to how Autism Speaks calculated their 1.5 million figure. This figure is inconsistent with existing data. Autism Speaks' Chief Science Officer, Geraldine Dawson, was kind enough to provide more information:

1. Autism Speaks is using the 2000 census figure of ~280 million for current total US population;

2. Autism Speaks is using not the 1 in 150 prevalence figure Autism Speaks widely promotes, but a prevalence of 1 in 166;

3. the source for the 1 in 166 figure is Bertrand et al. (2001);

4. applying a prevalence of 1 in 166 across the total US population of 280 million yields 1.68 million autistics (it is actually 1.69 million);

5. this figure is rounded down to the nearest half million, to the Autism Speaks 1.5 million.

I can spot some problems. Autism Speaks states that the prevalence reported in Bertrand et al. (2001) is 1 in 166. But even a cursory reading of this paper's abstract shows that this is false. Here's a quote:

"The prevalence of all autism spectrum disorders combined was 6.7 cases per 1000 children."

Prevalence of 6.7 per 1000 comes out to 1 in 149--or about 1 in 150, the prevalence figure Autism Speaks widely promotes. Applying a prevalence of 1 in 150 across the 2000 US census figure of 280 million equals 1.87 million autistics. Following Autism Speaks' apparent policy of rounding to the nearest half million, that would be 2 million autistics in the US.

Then where does the 1 in 166 prevalence figure came from? The source Autism Speaks provided, Bertrand et al. (2001), does not report this figure. Autism Speaks' epidemiological expert, Michael Rosanoff, helpfully informed me that Autism Speaks was using figures from the US only, in calculating the Autism Speaks 1.5 million.

In fact the 1 in 166 figure first appeared in the literature in Chakrabarti and Fombonne (2001), as an estimate based on the results of three epidemiological studies. Two are UK studies (Baird et al., 2000; Chakrabarti & Fombonne, 2001); the other is the US study, Bertrand et al. (2001) which reported a prevalence of ~1 in 150. No published US epidemiological study reports a prevalence of 1 in 166.

Another problem is that Autism Speaks' Chief Science Officer is stating that there is a high, stable rate of autism. This is a scientifically sound position but, as enumerated above, one thoroughly rejected by Autism Speaks.

Instead, Autism Speaks widely disseminates the information that the prevalence of autism "has increased tenfold in the last decade." That is, 10 years ago, the prevalence of autism was 1 in 1500. If this is accurate, then the total number of autistics in the US would be less than 500,000. How much less would depend on what happened prior to 10 years ago, and how suddenly the leap from 1 in 1500 to 1 in 150 occurred.

At the same time, Autism Speaks is basing its epidemiology on three US studies. In Bertrand et al. (2001), the children were born between 1988 and 1995. Virtually all would be diagnosable as autistic by ten years ago, and the prevalence in this population was found to be ~1 in 150.

The more recently published CDC studies (ADDMN, 2007a, b) highlighted by Autism Speaks feature children born in 1992 and 1994. Again, virtually all would have been diagnosable as autistic by 10 years ago, and prevalence in this population was reported as ~1 in 150.

So Autism Speaks' array of information about autism prevalence is distant from what is reported in the scientific literature. Overall, Autism Speaks is claiming there are fewer autistics in the US than there actually are. How many fewer varies enormously, depending on which of Autism Speaks' contradictory figures is chosen.

And the upshot is primarily the denial of the lives and existence of older autistics. In an international "They Don't Exist" campaign, Autism Speaks is denying older autistics--around the world--recognition, rights, a voice, the kind of basic services nonautistics can take for granted, etc. This anti-scientific and unethical practice is a hallmark of autism advocacy. Autism Speaks is denying the existence of most autistic adults and of large numbers of autistic children.

In order to accomplish this amazing feat, this disappearing of autistics in the US and around the world, Autism Speaks is widely disseminating false, anti-scientific information about autistic people. This false information is deployed to raise money and to alter public policy according to Autism Speaks' goals. There is no thought as to the consequences for autistics. Autism Speaks is sending a powerful message that scientific findings--which Autism Speaks raises money to fund--should be dishonestly misrepresented and discarded, when these findings inconveniently get in the way of autism advocacy leaders such as themselves. And according to Autism Speaks, so should autistic lives be discarded, if they are in the way.


References:

Autism and Developmental Disabilities Monitoring Network Surveillance Year 2000 Principal Investigators; Centers for Disease Control and Prevention. (2007a). 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. (2007b). 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.

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.

[Conflict of interest declaration: I'm affiliated with a research group which receives funding from Autism Speaks, among other funding sources.]

Autism advocacy as public policy: an example

Canadians are voting in a general election tomorrow. All major national political parties in Canada (Conservatives, Liberals, New Democratic Party, Green Party) are autism advocacy parties. That is, they are part of the widespread effort to make the world as free of autism--of autistic people--as possible.

Three of these parties have agreed that autistics contribute nothing to society as autistics, and that ideally our existence should be prevented.

The fourth party, the Green Party, has welcomed and adopted the views of their star candidate, the ex-Liberal MP Blair Wilson. Mr Wilson's public position is that the existence of autistics is a "blight on society," a blight against which Canada must take action. And Mr Wilson's view is that only autistics who undergo ABA-based interventions starting early in life have humanity. The rest of us--most autistics in Canada--don't. We have no humanity and aren't at all human.

Without exception, the positions of Canada's major national political parties entail writing off most autistics in Canada--those of us who haven't received unlimited ABA-based interventions starting early in life. The parties differ merely as to who exactly should pay for which aspects of the fight to achieve their collective ideal: a Canada free of autistic traits and abilities, and which has no autistic people at all.

In my search for someone I could vote for, I was given a closer look at one party's position. I was generously sent an internal Liberal policy document about autism.

This document includes information about the CIHR, about collaboration with autistic-free organizations whose goal is to prevent autism. But the Liberal's autism policy document is dominated by uncritical promotion of the premise that ABA-based interventions are the only effective "medically necessary" autism treatment, without which all autistics are expensive write-offs.

The sum total of the evidence provided by the Liberals to support this premise is Lovaas (1987). In this study, autistic preschool children in the experimental group were systematically hit--and hit "hard" according to two behaviour analysts involved in this study (Leaf & McEachin, 2008). This systematic hitting of very young children was, according to the design of Lovaas (1987) and its author, a crucial aspect of the experimental group treatment. A small-N study with major problems in reporting and methodology, Lovaas (1987) is not a true experimental design, and represents the standards of behaviour analysis circa 38 years ago.

It also apparently represents the standards of science and ethics that Liberals in Canada believe autistics deserve.

The Liberals go on to make this claim:

"Currently, statistics show that 90% of afflicted individuals are placed in institutions and residential facilities, placing increasing pressure on Canada’s education and social service programs."

This isn't the first time Liberals have denigrated developmentally disabled people by using what the Canadian Down Syndrome Society calls "inappropriate" and "offensive" language. To the Liberals, autistics are "afflicted individuals" and our proper place is in institutions. The 90% figure, an autism advocacy staple, exists nowhere in the history of autism research (for a review, see Howlin, 2005), much less in the present. Instead, this fictional figure reflects the extreme autism advocacy prejudice that autistics do not belong in society--surely, at least in part because we are presumed to be a threat to others--and instead must be locked away in institutions.

The Liberal Party, like the NDP and the Greens, have fully supported the autism advocacy organization FEAT (also known as "Medicare for Autism Now!"), which promotes the view that not only must most autistics in Canada be institutionalized, we must be kept in restraints and have our teeth pulled.

The Liberals elaborate the extent of the services required by all untreated autistics:

"With treatment, it is argued that the rate of institutionalization will be greatly diminished, and the current costs of over $300,000 per untreated autistic individual per year will be dramatically reduced."

The only approach to autism promoted in this document is Lovaas-type ABA as medical treatment, which must start early in life. This leaves the majority of autistics in Canada as "untreated" more-than-$300,000-per-year drains on society.

From recently reported figures, in Ontario, it costs between $20,000 and $78,000 per year (average is $49,000) for a developmentally disabled person to stay in a group home, and ~$100,000 per year to keep a developmentally disabled person institutionalized. Even a private sector institution, the Judge Rotenberg Center in the US, with its high level of restrictive supervision and its notoriously intrusive intervention program (including the use of strong aversives), is reported to charge ~$220,000 per year per inmate, many of whom are adults, many of whom are autistics.

So according to the Liberal Party of Canada, most autistics in Canada contribute nothing at all to society, in our entire lives. But beyond this, we just naturally have to be very expensively locked away into very secure--given the enormous cost--institutions (of any size) where we are constantly supervised and kept under control, apparently--given the enormous cost--by numerous round-the-clock staff. For our whole lives.

Using the currently-popularized autism prevalence figure of 1 in 150, there are ~150,000 autistic adults in Canada, and ~50,000 autistic children. Virtually all autistic adults in Canada are "untreated" (we did not receive Lovaas-type ABA starting early in life) and therefore we must, according to the Liberals, each be costing society at least $300,000 per year. That adds up to ~$45 billion per year. This is about the total amount the federal government transfered to the provinces in the 2008 federal budget. And that's just to pay for us untreated autistic adults. This doesn't include the costs of younger autistics who might also for various reasons be untreated by Lovaas-type ABA.

These extraordinary costs would be paid by the provinces. In Ontario, there are ~60,000 autistic adults. According to the Liberals, the Ontario government would be paying more than $18 billion per year, just for the costs of autistic adults. This would be about one-fifth of Ontario's total program spending.

The Liberals, however, rush in with their solution to the terrifying and appalling situation they have invented:

"It is important to note that on the flip-side, the cost of a science-based program for every child diagnosed at the age of 2 years is typically $60,000 per year, for the first three years. Some children no longer require treatment after this treatment period; some of the children may require treatment for a few more years, and then there is a minority of children who may need some level of treatment for their entire childhood, not unlike a child who may need long-term chemotherapy. However, these treatment costs typically decrease over time for the vast majority of children."

Again, by "science-based program," the Liberals are referring to Lovaas-type ABA as medical treatment. They contend that all autistic children do well in this treatment, and provided it continues if necessary until the end of childhood (where it apparently stops), Lovaas-type ABA is always successful in producing an autism-free individual.

There are no credible (in the peer-reviewed literature) sources for what the Liberals claim. Indeed, Lovaas (2003) makes the data-free claim that autistics who do not achieve "normal functioning" in ABA programs by age 7 (and the majority of autistics don't) will remain totally dependent on ABA programs for the rest of their lives.

There is no peer-reviewed paper that reports data about the adult outcomes of a controlled trial of Lovaas-type ABA (or any kind of ABA). The only follow-up into school ages follows-up the aversive-based treatment in Lovaas (1987; McEachin et al., 1993), and does not report that all autistic children in the experimental group eventually became free of autism and therefore had good outcomes. The only true experimental design (where the intended comparison between randomized groups was actually carried out) in the 47-year history of ABA-based autism intervention research, reported largely poor results in a small-N study, particularly for children with the specific diagnosis of autism (Smith, Groen & Wynn, 2000, 2001; don't forget to read the authors' errata). A recent uncontrolled trial, often falsely touted as a "replication" of Lovaas (1987), showed that the majority of children not only did not display improvement in their scores on any of the chosen outcome measures, they had significant losses in several measures (language, adapative abilities) over 4 years of intensive ABA (Sallows & Graupner, 2005). A recent community-based study showed that while preschool autistic children had widely varying individual short-term outcomes, their outcomes did not differ according to whether they did or did not receive Lovaas-type ABA (Magiati et al., 2007; see also Eaves & Ho, 2004, for similar results in a Canadian study). And so on.

With similar disregard for science and ethics, the Liberals claim that ABA-based autism interventions are just like chemotherapy. This is in concert with their false contention that ABA is a medical treatment, researched and provided by medical professionals according to medical standards. But this also demonstrates how the Liberal Party of Canada sees autism: as a cancer, that has to be gotten rid of, from individuals and society. In the Liberals' view, there is everything to be gained and nothing whatsoever to lose if public policy dictates that autism must be totally gotten rid of, just like cancer.

The Liberals go on to confirm how much money would be saved if autistic children all undergo Lovaas-type ABA as a medical treatment:

"By implementing ABA/IBI therapy into the category of insurable health services, provinces and territories will save approximately $240,000 per autistic individual per year, with a declining cost scale associated with successful treatment outcomes."

This Liberal Party autism policy document is so distant from accuracy, from recognized standards of science and ethics, that it's difficult to respond to (where do you start?). And indeed, I've been informed by Liberals, numerous times, that any criticism of the views of autism they widely disseminate is outrageous and unwelcome--how dare I. This is another hallmark of autism advocacy: any scrutiny or criticism of claims made about how autistics should be regarded and treated--any hint of standards of science and ethics--is seen as reprehensible, and is responded to by personal attacks. Autism advocacy as public policy is above science and ethics, above scrutiny and criticism.

My purpose isn't to single out the Liberals. I'm using their document as just one example of what autism advocacy is and what autism advocacy does. I suggest that if the other major political parties in Canada have produced internal autism documents or backgrounders, these too would be filled with policies and positions based on similar extreme falsehoods and stereotypes. These too would display abysmal standards of science and ethics. All of Canada's major political parties are autism advocacy parties displaying and promoting popular autism advocacy standards, values, methods and goals.

If you're not an autism advocate, if you want a place in Canadian society for autistics, if you support full equality and participation and recognized standards for autistics, if you believe autistics deserve better--there's no one to vote for.


References:

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.

Howlin, P. (2005). Outcomes in autism spectrum disorders. In F.R. Volkmar, R. Paul, A. Klin & D. Cohen (Eds), Handbook of Autism and Pervasive Developmental Disorders. Hoboken, NJ: Wiley.

Leaf, R. & McEachin, J. (2008). The UCLA Young Autism Project. In R. Leaf, J. McEachin & M. Taubman (Eds.), Sense and nonsense in the behavioral treatment of autism: It has to be said. New York: DRL.

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 . (2003) Teaching Individuals with Developmental Delays: Basic Intervention Techniques. Austin, TX: Pro-Ed.

Magiati, I., Charman, T., & Howlin, P. (2007). 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, 48, 803-812.

McEachin, J.J., Smith, T., & 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.

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

Smith, T., Groen, A.D., & Wynn, J.W. (2000, 2001). Randomized trial of intensive early intervention for children with pervasive developmental disorder. American Journal on Mental Retardation, 105, 269-85. Erratum in American Journal on Mental Retardation, 105, 508. Erratum in American Journal on Mental Retardation, 106, 208.