Wednesday, December 31, 2008

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.)

Monday, December 29, 2008

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.

Saturday, December 20, 2008

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.

Thursday, December 11, 2008

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.]

Monday, December 01, 2008

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.

Thursday, November 27, 2008

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.]

Monday, November 17, 2008

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.

Friday, November 07, 2008

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.

Tuesday, November 04, 2008

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.]

Monday, October 13, 2008

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.

Friday, October 03, 2008

Another autistic victory

"... the Tribunal finds that the complaint filed by Ms. Dawson against Canada Post is substantiated and that the Respondent has contravened sections 7 and 14 of the Act."
That's from paragraph 248 of a decision just released by the Canadian Human Rights Tribunal, in the first ever autism-related case referred to this Tribunal for a hearing.

You can find this decision here in html and here in pdf.

In some ways it's a very strange decision, with a stupefying number of just huge factual errors in it. Due to my own incompetence in representing myself (and in just generally functioning throughout the extensive hearings) and for other reasons, including the enormous factual errors made by the Tribunal, I lost some aspects of this case. But to my own astonishment, I won other aspects. Indeed the aspects I won are those most important to me, and also those which I was firmly discouraged from pursuing by the Canadian Human Rights Commission (which was a party to this case, representing the public interest).

Setting aside the astounding factual errors about the specifics of the case, as I believe they should be set aside, and setting aside my own personal situation, as I believe should also be set aside, this decision is entirely good for autistics in Canada. It is unprecedented in establishing under a human rights law in Canada that autistics--as autistic people, and regardless of what kinds of interventions we may or may not have received--are human beings with human rights.

Here is an excerpt:

[242] Be this as it may, the Tribunal finds it disturbing for the future of autistic people that they be seen because of their condition to pose a threat to the safety of others and some form of nuisance in the workplace. An employer has a duty to ensure not only that all employees work in a safe environment but also that ill perceptions about an employee's condition due to poor or inadequate information about his disability lead other employees to have negative and ill-founded perceptions about him.

[243] An autistic person should expect that his workplace be free of any misperception or misconception about his condition. It goes to the right of autistic individuals to be treated equally, with dignity and respect, free of any discrimination or harassment related to their condition. In this respect, in a society where human rights are paramount, an employer has the duty to dispel such misconception or misperception about such individuals.

[244] This duty stems from the Canadian Human Rights Act and the need to get rid of any discriminatory behavior in the workplace as well as in society in general. It is worth reminding employers as well as society as a whole that the purpose of the Canadian Human Rights Act, as stated in section 2 of the Act, is to give effect to the principle that all individuals should have an opportunity equal with other individuals to make for themselves the lives that they are able and wish to have and to have their needs accommodated, consistent with their duties and obligations as members of society, without being hindered in or prevented from doing so by discriminatory practices based on race, national or ethnic origin, colour, religion, age, sex, sexual orientation, marital status, family status, disability or conviction for an offence for which a pardon has been granted.

[245] Autistic people, if they want to be able to accomplish themselves in a workplace or in society, need to be reassured that everything possible short of undue hardship will be done in order to ensure that misperceptions and misconceptions about their condition are properly handled by their employer, so that co-workers have a proper understanding of their condition and are not inclined to discriminate against them or harass them.

[246] To discriminate on the basis of somebody's physical appearance or social behavior might be one of the cruelest forms of discrimination. Here, Ms. Dawson was seen or perceived, at one point in her career at Canada Post, to be a threat to her co-workers because she had self-injured in the past, not because she had assaulted colleagues. She was later on perceived as a form of nuisance because she insisted on obtaining rational responses to her queries and never backed down. The fact of the matter is that Ms. Dawson was, until her diagnosis became officially known to Canada Post in 1999, seen as an excellent employee.

[247] The Tribunal is of the opinion, in view of the evidence, that the Respondent needs to review its policies in relation to discrimination and harassment and put in place educational programs that will sensitize its employees as well as management to the needs of disabled individuals in the workplace, notably autistic individuals, so that individuals such as Ms. Dawson will not have to suffer from a lack of knowledge and understanding of their condition. In this respect, given the Canadian Human Rights Commission's expertise in these matters, the latter can surely provide assistance, which should be welcomed, to the Respondent.

What I was dreading most was the same thing I had dreaded in Auton at the Supreme Court of Canada: a decision that would harm autistics, would make our lives even more difficult, would further limit our possibilities, would make it less likely that we would ever be given the opportunity to demonstrate our ability to contribute to society as autistic people. But this Tribunal decision, for all its faults with respect to the facts of the specific case, is instead a step in the right direction. It's a step towards human rights for autistics in Canada, and towards all the possibilities human beings have, when we are regarded and treated as equals, and can proceed in society as fully human beings with human rights and dignity.

As one autistic person, I did the best I could (with many thanks to those who helped along the way). And I didn't win every aspect of this specific--and very difficult and exhausting--case. But for all autistic people, this Canadian Human Rights Tribunal decision is a one hundred percent victory.

[Note: for clarity, the title "Another autistic victory" alludes to a 2005 article I wrote called "An autistic victory," about the Auton Supreme Court of Canada decision.]

Sunday, July 13, 2008

Remembering Marla Comm

Jonathan Mitchell has posted that Marla Comm has died. He was informed of this by Susan Moreno of MAAP.

According to Mr Mitchell, Marla died of breast cancer. She was not much older than me.

Cancer is a truly horrible disease.

I can't remember which years it was that Marla would often phone me. This happened after Peter Zwack (who also died far too young of cancer) asked me if he could give my phone number to an autistic called Marla so she could phone me. I said sure. Eventually, Marla started phoning me.

The first thing about Marla is that she was brilliant. She had a math degree, from McGill I think. She knew all kinds of stuff (she once started talking about the keys in which klezmer music is played, e.g.). She shared my interest in the weather. She knew a lot about computers, but I couldn't speak with her about this due to my own total ignorance (I didn't have a computer at the time). I remember at some point, someone in her workplace gave her a computer.

Marla's determination was fantastic. She had been very determined in unearthing the records of her own past. She was very determined to have her story told in a book, and succeeded more than once.

In a city that's notoriously dangerous for cyclists, Marla routinely rode her bike from the west end of Montreal all the way to the Olympic stadium way over in the east, and back--amazing. She also rollerbladed. I'm sure I saw her once (we never met--I don't think she wanted to meet me--but I did see a photo of her in a media story), whizzing by through an intersection, with great verve, poised and confident and--happy. She loved biking and rollerblading. Also, she liked walking up big hills--something we had in common.

She hated winter, disliked French, had a poor opinion of francophone Quebecois, and wanted maybe more than anything (at least, during the time she phoned me) to live in an English city where there is no winter. She hated Montreal. But she was an active citizen; she often told me that another of her letters to the editor had been published in the Montreal Gazette. She would sometimes tell me, when she phoned me, that she couldn’t talk much because she had so much email, from friends and supporters, to read.

She didn't need too much in the way of services and assistance, but what she needed, she really needed. During the time she phoned me, she had not succeeded in getting the relatively minor services and assistance she needed and which would have made a major difference in her life. She had tried very hard, and had very bad experiences in trying.

The kind of help she needed, I couldn’t have provided (even if she had asked me, which she didn’t), and I had no more success than she did, in obtaining even minor assistance via autism societies, etc. I tried to share with her ways I dealt with my own limitations, but she was neither interested nor in the least impressed. After all, I was usually in more trouble than she was, throughout the time we spoke. I could hardly recommend anything, as she astutely noticed.

One thing she told me was that she never laughed. She had no sense of humour at all. But once when she phoned me, she launched into an anecdote about her family. I pointed out that it was very funny, and she laughed, right out loud. She had a great laugh. Some other times when she talked, she got very close to laughing too. But she did outright laugh that one time--she saw the absurdity in the story she had done a superb job of telling me, and it made her laugh.

Once when she phoned me, I told her I thought she was totally cool. This was true: I often disagreed with things she said, but I thought she was totally cool. This seemed to bother her, and she never phoned me again. She had never indicated in all the time she phoned me, that she would be okay if I phoned her, much less that she wanted me to phone her. So I did not try to phone her, and that was the last we spoke, many years ago.

Now and then I would hear news about her, and when I got online found her here and there as well, always wanting to get away from Montreal, the city she hated.

It's terrible that she died of cancer at such a young age. I hope she managed to rollerblade as long as she could. That's how I'll remember her, flying by on the street, free and happy in the summer.

(This was originally posted on the TMoB board shortly after I heard about Marla's death.)

Thursday, June 19, 2008

Nine years

I wrote about the life and death of Tiffany Pinckney here.

She was a young autistic woman who was neglected for years extending back into her childhood, by her sister and legal guardian Allison Cox. In the spring of 2005, Tiffany died of starvation in the place where she lived, deliberately locked into a filthy, windowless basement, with no access to a toilet, food or water. She was skin-and-bones when she died, a skeleton, and caked with dirt and feces, just like the room she was locked into. She suffered beyond what can be described in words, in the middle of a wealthy Mississauga neighbourhood, hidden underneath a fancy four-bedroom home.

She may have been dead in her basement prison for more than two days before her death was reported via a 9-11 call.

Today Allison Cox was sentenced to nine years in prison for deliberately neglecting and starving her sister Tiffany to death.

You can find information about Ms Cox's sentencing in today's Toronto Star. Here is an excerpt:

Justice Joseph Fragomeni described the circumstances of the case as among the worst he's ever experienced as a trial judge.

He said Pinckney endured a "slow, painful and lonely descent into death," and that the "graphic and disturbing photos" presented during the trial "spoke volumes" about the last days of her life.

He told Cox that society demanded that she serve a lengthy period of incarceration in a federal penitentiary for what he described as a "tragic, horrific and senseless" death of a "vulnerable" young person.

He said Pinckney was denied the "most basic" of human necessities. "She was denied food, water and medical attention," he said.

"How is it possible in a country of such wealth and abundance that a person could die from a lack of food and water?" Justice Fragomeni asked. "Tiffany didn't see a doctor for five years ... (Cox’s) breach of trust was egregious."
The question remains why Ms Cox was not charged with a more serious crime. In a November 1, 2007 story, the Toronto Star quoted John Raftery, the prosecutor, as arguing in court that:

"Not only is there enough evidence to convict her (Cox) of manslaughter but there is sufficient evidence for first-degree murder."
In 2002, a young boy called Jeffrey Baldwin died in Toronto of extreme neglect at the hands of his legal guardians. He was locked in a room, starved, "forced to sleep in his own excrement", and grossly mistreated, though unlike Tiffany, he had a toilet to drink from. Jeffrey was not autistic. His horrific death (his body was "covered with sores and abrasions" and at nearly age six weighed less than what a one year old should weigh) attracted sustained attention from the major media. No one attempted to blame his death on his own characteristics, his own needs or abilities, his own presumed level of functioning, his own behaviour, etc.

Jeffrey's guardians were originally charged with first degree murder, were convicted of second degree murder, and were required to serve 20 to 22 years in prison (close to the maximum for first degree murder) before being eligible for parole.

Nine years in prison (and two years of house arrest for Ms Cox's husband, Orlando Klass) does not seem much, against the life and death of Tiffany Pinckney, and how much she suffered for so long.

Before being deliberately neglected and starved took all her possibilities away, and when she was away from the horror of her home, Tiffany "loved music." She was "lots of fun" and "excited and happy." She was "great." I will always remember her, every day.

Monday, June 16, 2008

Verbatim: Levels of functioning in autism

This very short entry in the verbatim series is from Lovaas (1996). The children Dr Lovaas refers to in this quote are autistic. Italics are in the original, which sits within one of the major autism ABA manuals:

Terms such as high-functioning versus low-functioning children are derogatory and should be avoided.

Reference:

Lovaas, O.I. (1996). The UCLA young autism model of service delivery. In C. Maurice, G. Green, & S. Luce (Eds.), Behavioral intervention for young children with autism: A manual for parents and professionals. (pp. 241-248). Austin TX: Pro-Ed.

Friday, June 13, 2008

The epidemiology of Autism Speaks

Autism Speaks promotes 1.5 million as the number of autistics in the US, a figure Autism Speaks associates with a 1 in 150 prevalence of autism. For example, Autism Speaks' FAQ states that:

"As many as 1 in 150 children are autistic, according to the Centers for Disease Control. That adds up to almost 1.5 million people in the United States."
You can also find Autism Speaks informing the public that all those 1.5 million autistics are children. Here's a quote from a recent Autism Speaks press release, where Mark Roithmayr, Autism Speaks' President, is quoted as saying:

"Toys“R”Us has been a tremendous partner in helping us shine a national spotlight on this disorder, which affects 1.5 million children in the United States."
My question is, where does the Autism Speaks 1.5 million come from? Other autism advocacy organizations use this figure, but Autism Speaks is the current authority, the major private autism research funding body, a major influence on public spending, the biggest, most powerful autism advocacy organization of them all, representing and deciding the (ideally, according to Autism Speaks, very short) future of all autistic people.

If there are 1.5 million autistic children in the US, as Autism Speaks claims, and if the prevalence of autism is 1 in 150, as Autism Speaks also claims, then the total number of children in the US would have to be 225 million.

According to the US Census Bureau, the total US population is currently just above 300 million. According to the same source, the total number of children (age 0-19) in the US would be about 80 million. If Autism Speaks is still insisting, as it did in a May 2008 press release, that there are 1.5 million autistic children in the US, then Autism Speaks has discarded the 1 in 150 prevalence figure in favour of 1 in 53 (even higher than the UK Observer could manage in its big, bogus, retracted autism scare story).

On the other hand, if Autism Speaks is claiming that there are 1.5 million autistics in total in the US, including autistic adults, this produces an overall prevalance of about 1 in 200, dramatically lower than Autism Speaks' widely advertised 1 in 150.

Or Autism Speaks might be claiming that the prevalence of autism is 1 in 150 in children, and lower in adults. In order for the 1.5 million figure to work this way, the prevalence of autism in adults would have to be about 1 in 220. This is not a figure that I can find anywhere on the Autism Speaks website, never mind its rationale.

On the other hand, if Autism Speaks applies their advertised 1 in 150 prevalence figure to the entire US population (which cracked 300 million in 2006), then the result is a total of 2 million autistics in the US, of whom about 500,000 are children and 1.5 million are adults. But this would mean that there has been a high stable rate of autism. This is a scientifically sound position, but one that Autism Speaks and autism advocacy in general has rejected.

All of the figures above are easy enough to find and calculate--well within Autism Speaks' abilities. After all, Autism Speaks has numerous scientific advisors as well as a chief scientific officer. And a difference of 500,000 between the figure promoted by Autism Speaks and the figure consistent with the existing scientific literature is hardly trivial. What major, high-profile disability organization would so persistently deny the existence of hundreds of thousands of the disabled people it claims to represent? This can only result in disabled people being unable to obtain services, unable to be recognized for their contributions, unable to have a voice in their own future, etc.

But this is what autism advocates do. One of the near universals of autism advocacy is the promotion of the autism "epidemic," and the rejection of the scientific position that there's been a high stable rate of autism. The main effect of this has been the denial of the existence of older autistics. In Canada, this denial of autistic lives by autism advocates has been extreme.

Another universal of autism advocacy is a gross disregard for accuracy and ethics in reporting what is known about autism. Autism Speaks is telling the world--including governments--that when it comes to autism, you don't need to bother with the facts. You don't need to check your basic arithmetic, much less take the trouble to look up primary sources. Autism Speaks' widely disseminated 1.5 million figure, and its casual denial of half a million autistic lives, is just one example of the standards of science and ethics that leading autism advocates apply to autistics.

Sunday, February 10, 2008

The life and death of Tiffany Pinckney

Tiffany Pinckney died on April 2, 2005, in a filthy windowless basement under a fancy four-bedroom home in a well-off neighbourhood in Mississauga, Ontario. She was autistic. She died of starvation at the age of 23, having been neglected to death. She was skin and bones, when she died. She was found to have brain damage (Central Pontine Myelinolysis) consistent with malnutrition and deprivation of or inadequate provision of water.

I didn't hear about her until she had been dead for several months. At the end of July, 2005, after an extensive investigation, police laid charges against Tiffany's older sister Allison Cox and her husband Orlando Klass. Reports of these charges (failure to provide the necessities of life; criminal negligence causing death) were the first mentions of the death of Tiffany Pinckney in the media.

It was in Ms Cox and Mr Klass' basement that Tiffany died. It's possible that she died while Ms Cox, who had been Tiffany's legal guardian for seven years, attended a birthday party with her children.

In June, 2007, Mr Klass pleaded guilty to the charge of criminal negligence causing death. He did not go to jail. He was sentenced to two years of house arrest. Meanwhile, Ms Cox was additionally charged with manslaughter in Tiffany's death.

Here is a bit about the life and death of Tiffany Pinckney. The information comes from media reports about her death in 2005 (from the National Post and the Toronto Star, among others), and media reports in October and November, 2007, about the trial of Allison Cox (from the Toronto Star and the Missisauga News).

Tiffany Pinckney was born in the U.S. and lived there with her mother until the early 1990s, when they moved to Canada.

Tiffany was born with a heart defect, and was diagnosed as "mentally challenged" when she was four. She was diagnosed autistic when she was 10 (which would be circa 1992).

When Tiffany was 16, in 1998, her mother died of cancer. Ms Cox became Tiffany's legal guardian and principal caregiver.

The first reports I read about Tiffany's death (e.g., in the Toronto Star, July 27, 2005) suggested that she had been neglected for a long time--possibly more than seven years. This would be the entire time she was under the care of Ms Cox. Some of the reported testimony at Ms Cox's trial was consistent with this.

For example, a teacher at the school Tiffany attended until 2003 (when she would have been 21) testified about Tiffany's poor condition (weight loss, obvious lack of care, "she did not look well") going back to her teens. The same testimony suggested that at this school, Tiffany was loved. She "loved music." She was considered "lots of fun" and "great." She was "excited and happy" taking the bus to school but "upset" returning home to the care of Ms Cox (all from the Toronto Star, October 12, 2007).

There was also testimony from various sources that Ms Cox persistently refused offers of assistance and services in caring for Tiffany. Also, Tiffany was not taken to see a doctor in the last five years of her life.

But neither those who witnessed Tiffany's deterioration at school, nor those whose services were refused, did anything to ensure that Tiffany was getting at least the minimum of necessary care. One of Tiffany's teachers testified that if Tiffany had been 3 years old, she "would have called the Children's Aid Society" (also from the Toronto Star, October 12, 2007). But this teacher did not do anything and nor did anyone else.

In August of 2004, Tiffany was moved by Ms Cox to a four bedroom home, described in the National Post as being on a street "lined with two-storey homes and well-kept lawns."

Here, Tiffany was kept in an unfinished windowless basement room with bare walls. She slept on a deflated air mattress on plywood or pressboard. There was no toilet in the basement. There was no running water. No source of food. Neighbours reported being totally unware that Tiffany existed.

There was a lock, on the door down to the basement. And this door had been reinforced by the addition of weather stripping. So Tiffany was both locked and sealed into the basement.

Upstairs, there was a lock on the refrigerator.

She died of starvation over a long period of time, losing more than 100 pounds. When she died, she weighed 84 pounds and was described as "skeletal." There was expert testimony that adequate provision of food and water could have saved her life.

At her death, she was caked in dirt, urine and feces, as was the room she lived in, where the stench was reported as being appalling. She looked exactly how any person locked and sealed into a basement for many months and denied access to food, water, a toilet, the light of day, etc., might be expected to look.

It is hard to imagine how much Tiffany must have suffered.

On February 2, 2008, Ms Cox was convicted of manslaughter by Judge Joseph Fragomeni. She has been free on bail since her original arrest, and will remain free until she is sentenced in May, 2008.

While I have been writing about Tiffany Pinckney sporadically since 2005, it has taken me a long time to write this short and totally inadequate post about her life and death.

In trying to write this, I've often stopped and wondered if Tiffany had ever, in the months she was dying, sealed and locked in the basement, tried to escape. Maybe she had been neglected for too long, was too sick and weak. Maybe she had been, as many autistics are, successfully discouraged from any behaviours involved in escaping. Also I am thinking of her when she was younger and not yet dying, getting "upset" on the bus going home, after enjoying her day at school. It seems to me that she was communicating something important. Possibly, she communicated this important thing many, many times and when this made no difference (perhaps she was considered to be misbehaving) she stopped. I've often stopped and wondered whether she would be alive if someone, anyone, had listened.