The autistic way of laughing

There are real and fake smiles that can be distinguished visually, if you know how, and it turns out that there are real and fake laughs. William Hudenko, a clinician and researcher, patiently explained this to me at IMFAR 2009. Real laughs are "voiced" versus fake laughs that are "unvoiced" and these two kinds of laughs can be distinguished acoustically.

Hudenko et al. (in press) describe voiced laughs as having a "tonal, song-like quality" and as "strongly associated with positive affect," while unvoiced laughs are "largely atonal and noisier." Instead of reflecting a person's genuine emotions, unvoiced laughs are hypothesized to reflect various social signals.

When nonautistics laugh, about half the time their laughs are unvoiced. So how do autistics laugh?

Hudenko and his colleagues collected a lot of laughs from autistic children and two groups of nonautistic children (matched on chronological age, and matched according to vocabulary test age equivalents). Laughs were elicited in a 10-minute "laugh assessment sequence" in which "an examiner playfully interacted with each child."

The results? Autistics laughed just as much as nonautistics. The sole difference between autistic and nonautistic laughs was in proportion of voiced laughs. While on average, 97% of autistic children's "laugh episodes" were voiced, only 63% and 47% (age-equivalent and chronological age groups respectively) of nonautistic children's laughs were voiced. And about half the autistic children produced only voiced laughs.

You can find some autistic and nonautistic laughs here.

In their discussion, Hudenko et al. put forward this view:

...children with autism routinely produce fewer types of laughs than typically developing children because their laughter is more closely linked to their internal experience of positive affect.

If this is so, then the autistic children in this study expressed more positive emotion--more genuine happy affect--in interacting with another person than did the nonautistic children. Hudenko et al. also refer to an earlier study which found, in the typical population, more positive responses to voiced versus unvoiced laughter. Nonautistics prefer voiced laughter.

Given prevailing standards in the autism literature (arising from prevalent standards of autism advocacy), no one should be surprised at how Hudenko et al. interpret their findings. The authors imply, in the absence of any evidence in this direction, that all this happy, genuine, engaging autistic laughter is unlikely to be socially "appropriate." Unfortunately, according to the authors, autistics "are not using laughter in a socially subtle manner." And here is the paper's unfounded concluding sentence:

In fact, by using laughter in a less social manner it may be that this expressive pattern actually contributes to the social deficits exhibited by children with autism instead of serving to facilitate connections with others.

But the story doesn't quite end there. I ran into Dr Hudenko at IMFAR because he and one of his colleagues had a poster (abstract is here), a follow-up of sorts. In this new and as yet unpublished study, recordings of voiced and unvoiced autistic and nonautistic laughs were played for 135 nonautistic college-aged students. The students were asked to rate their "affective response" to each laugh on a scale from strongly negative to strongly positive. In a different task, the students were asked whether each recorded laugh came from an autistic or nonautistic child.

The results? The students rated their responses to autistic laughs as being significantly more positive than their responses to nonautistic laughs. Interestingly, this held true even when voicing--whether laughs were voiced or unvoiced--was accounted for. And when asked to do so, the nonautistic students could tell autistic and nonautistic laughs apart. The students performed above chance on this task, while only about one-fifth of them believed they could make this distinction.

So Hudenko et al. (in press) contend that autistics' way of laughing is defective and detrimental--a presumed contributor to autistics' presumed social deficits. This in turn implies that ideally, autistics would not have such engagingly positive, genuine and distinctive laughs, and instead should have the only "right" kind of laughter, the kind which characterizes nonautistics. But according to Dr Hudenko's IMFAR follow-up study, "improving" autistics this way would result in their laughter being less preferable to nonautistics than is currently the case.


Reference:

Hudenko, W., Stone, W., & Bachorowski, J. (2009). Laughter Differs in Children with Autism: An Acoustic Analysis of Laughs Produced by Children With and Without the Disorder Journal of Autism and Developmental Disorders DOI: 10.1007/s10803-009-0752-1

Addendum: This post is included in the 5th edition of Scientia Pro Publica (more information here), hosted by Pro-Science.

Saving autistics and the world: Skin shock at the 2009 ABA convention

The press release for the 2009 Association for Behavior Analysis International convention claims that behaviour analysis "Reveals Methods for Solving Global Issues." There is a list of "major topics at the convention" which include:

How behavior analysis will help save the planet... How behavior analysis will help save the economy... How behavior analysis will help save lives... How behavior analysis will help us understand each other...

Autism is modestly mentioned in the third topic only (lives will be saved), even though claims that behaviour analysis can save the economy by saving children from autism are as common as they are unfounded in existing published evidence.

Looking around the 2009 ABAI convention program, you will in fact bump into the notion that ABA can, and should, save the world. For instance, from Tutorial #287:

This presentation will inspire a reconsideration of how ABA can save the world... the presenter will discuss the relevance of courage and compassion in realizing the potential of ABA to save the world...

Symposium #403 at this year's ABAI convention is chaired by Matthew Israel (Judge Rotenberg Center), and is titled:

The Use of Contingent Skin Shock in Treating Behaviors Other than Aggression and Self-Abuse

The three presenters in Symposium #403 are all from the Judge Rotenberg Center. Nathan Blenkush, BCBA-D (this is the highest status certification for behaviour analysts currently available), describes his presentation this way:

There are a number of topographies of problem behaviors that are intractable to standard behavioral and pharmaceutical interventions that cannot be classified as aggressive or self-abusive behaviors. In this presentation, we will describe the successful treatment of a variety of intractable behaviors using Contingent Skin Shock. First, we will review the literature associated with the use of CSS to treat non-aggressive and non-self injurious behaviors. Second, we will discuss how problem behaviors such as property destruction, major disruption (e.g. yelling, tantrums,), noncompliance or any other behavior in excess can severely harm students and completely interfere with treatment, education, and social development. Finally, we will present a series of case studies that will illustrate the use of CSS to treat these types of behaviors. Finally, we will discuss the treatment of these behaviors within the framework of the right to effective treatment.

Robert Von Heyn, BCBA-D, describes his presentation this way:

We describe the use of supplementary Contingent Skin Shock (CSS) to address intractable behaviors other than aggression and self-abuse. From 2003 to 2006, CSS was added to the programs of 72 students. However, in June of 2006, the New York State Department of Education put into effect regulations that limited the use of skin shock to aggressive and self-injurious behaviors. Subsequently, a federal judge temporarily blocked these regulations at the request of the parents and treatment resumed for most of these students. Here we first describe the initial effect of adding CSS to the students programs. Second, we describe the effect of the temporary suspension of the treatment for behaviors such as major disruption, property destruction, and noncompliance. Third, we describe how the regulations affected the treatment of problem behaviors such as aggression and self-abuse. Finally, we describe the effect of the reintroduction of CSS treatment, following intervention by a federal judge, for destructive, major disruptive, and noncompliant behaviors.

And Nick Lowther describes his presentation this way:

In June of 2006, the New York State Department of Education put into effect a set of regulations related to the use of aversive interventions such as Contingent Skin Shock (CSS). The regulations limited the use of CSS (and other procedures such as mechanical restraint) only to aggressive and self-injurious behaviors. The regulations also placed a number of other restrictions on the use of procedures such as CSS. However, after 9 weeks, in September of 2006, a federal judge temporarily blocked these regulations at the request of the parents. In this presentation, we discuss the impact these regulations had on the students at the Judge Rotenberg Center. In addition, the history of this lawsuit will be discussed. Finally, we will provide an update regarding the current status of the suit.

Symposium #403 comes with a written "Purpose," which adds little to the above except the false information that existing evidence supports the use of contingent electric shock for some behaviours. It is true that the current edition of the major ABA textbook (Cooper et al., 2007) promotes the use of electric shock with developmentally disabled people. But setting aside ethical issues which should not be set aside, Cooper et al. (2007) cite no good quality evidence arising from good experimental design, or anything even close, in support of this practice. In this major ABA textbook, very poor standards of science and ethics, which are known to harm human beings, coincide and are promoted as what autistics and other developmentally disabled people deserve.

In contrast there are scientists who, at least in some instances, have regarded autistics and other developmentally disabled people as deserving the benefit and protection of recognized standards of science and ethics. These scientists have unsurprisingly revealed the extremely well-established and well-recognized (outside of autism and ABA areas) importance of good experimental design (Tyrer et al., 2008; abstract is here, short description here).

I will not be attending the 2009 ABAI convention. The publicly available statements by the JRC presenters, two of whom are BCBAs at the highest level, are provided unedited here to speak for themselves. While the JRC's specific practices are the subject of controversy in some quarters, their stated standards are widely promoted as the only way to save autistics, and are not in any way unique to the JRC.


References:

Cooper, J.O., Heron, T.E., & Heward, W.L. (2007). Applied behavior analysis: Second edition. Upper Saddle River, N.J.: Pearson Prentice Hall.

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.

The autism recovery story

You have seen the autism recovery story in the media. Bloggers have jumped in too. I was at IMFAR 2009 in Chicago and saw the educational symposium presentation by Deborah Fein that was the stated cause of all the excitement.

But in her presentation, as in her abstract, Dr Fein did not associate the findings she reported with any kind or quantity of autism intervention or treatment. When speaking at IMFAR, she expressed doubt that this in fact could be done.

Dr Fein clearly added more information when speaking with the media. She expressed her view that recovery from autism, what Dr Fein calls "optimal outcome," was associated with early intensive ABA-based autism interventions. Like all researchers, she is free to say what she wishes to the media.

However, her statements relating kinds and amounts of intervention to outcomes in autistic children are not supported by any of the data she chose to present at IMFAR 2009, either in her oral presentation or in a series of related posters.

Indeed her study design does not permit any conclusions about effectiveness of interventions, no matter how "effectiveness" is defined. She has not conducted a true experimental design in which well-known sources of bias can to some degree be accounted for and therefore the effects of interventions, their benefits and harms, can usefully be assessed.

In order to claim that conclusions can be drawn about the effectiveness of interventions in Dr Fein's study, as it has been presented, you have to be willing to reject and discard even the most basic standards of science. These are the basic standards that automatically protect and benefit nonautistics, the basic standards that were developed because without them people were harmed.

Two other aspects of what Dr Fein presented at IMFAR 2009 are noteworthy. One is that a major paper in the literature, published not long ago, reported a very high rate of what is now being called recovery from autism. To my knowledge, this paper did not make headlines.

Turner and Stone (2007) were looking at the stability of autism diagnosis at around age two years (mean age of 29 months). They carefully used various combinations within what is considered the gold-standard diagnosis: ADOS, ADI-R, and clinical judgment. And they found that early diagnosis, in their sample of 48 originally autistic children, was very unstable.

By age four (mean age of 53 months), only 53% of children originally given the specific diagnosis of autism retained this specific diagnosis, while only 68% were still on the autistic spectrum. The rest were not. That is a 32% rate of "recovery." Only 40% of children originally diagnosed with PDD-NOS at age two still had an autistic spectrum diagnosis by age four. That would be a 60% rate of "recovery."

The children whose age two diagnoses were unstable were largely still regarded as having difficulties, a finding that echoes Dr Fein's work, but they no longer could be diagnosed as autistic.

Turner and Stone (2007) attempted to associate instability of diagnosis (what is being called "recovery") with interventions received, but no association was found. They report:

All children in the sample received speech therapy, and the majority received additional interventions. There were no significant differences between the Stable and Change groups for the amount of speech therapy, t(46) = .30, p = .77, behavioral therapy, t(46) = .78, p = .44, occupational therapy, t(46) = 1.90, p = .06, special education, t(46) = 1.96, p = .06, or regular preschool, t(46) = .13, p = .90. Of the 6 children who received an average of 20 or more hours of intervention per week, 5 were in the Stable group and 1 was in the Change group.

In other words, few of the 48 originally autistic children in this study received what would be considered "intensive" intervention, and the majority of those who did kept their autism diagnosis.

In contrast, Turner and Stone (2007) found that diagnostic instability was related to earliness of diagnosis: the earlier the diagnosis, the more unstable it was.

The authors go on to discuss what may underlie the diagnostic instability they found while using the best available diagnostic standards. In fact there are many possible explanations. One point they do underline, however, is that given their findings,

...extreme caution must be taken when interpreting intervention findings that suggest ‘cures.’

And of course that would include intervention findings that suggest "recovery." This may be all the more so when diagnosis, and therefore intervention, is very early.

Also noteworthy is Dr Fein's use of the term "optimal outcome," a term she prefers to "recovery." Dr Fein and her colleagues have determined the criteria for optimal outcomes in autism, and these criteria assume that autistics who remain autistic are suboptimal. Remaining autistic is an undesired, unsatisfactory, inferior, suboptimal result.

According to Dr Fein, and those enthusiastically promoting her views, we know what an optimal human being is like, and this optimal human being is not autistic. An optimal outcome is not Stephen Wiltshire or Alex Bain or Daniel Tammet or Derek Paravicini or Hugo Lamoureux or Vernon Smith or Richard Bocherds or Danny Melvin or Tony DeBlois or janet norman-bain or Jessica Park or Temple Grandin or the large proportion of autistics found recently to have exceptional skills (Howlin et al., 2009) or me for that matter.

Indeed, Dr Fein's group has proposed loss of exceptional autistic skills as evidence for optimal outcomes. And given the great support Dr Fein's views have received, we should be in little doubt as to the goals of popularly demanded autism interventions, and the consequences for those of us who for whatever reason remain unrecovered. The decision as to which kind of human being is optimal and which kind is not has been made.


References:

Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2009). Savant skills in autism: psychometric approaches and parental reports. Philosophical Transactions of the Royal Society B: Biological Sciences, 364, 1359-1367.

Turner, L., & Stone, W. (2007). Variability in outcome for children with an ASD diagnosis at age 2 Journal of Child Psychology and Psychiatry, 48 (8), 793-802 DOI: 10.1111/j.1469-7610.2007.01744.x

A letter to the International Society for Autism Research

The following letter was forwarded to an INSAR (International Society for Autism Research) official...

To the INSAR Board of Directors:

I am a full INSAR member who has attended the International Meeting for Autism Research (IMFAR) every year since 2004. Starting in 2007, IMFAR sponsors have been given prominent free time in plenary sessions to say whatever they wish.

This practice is problematic in itself, but what is worse is that no questions are allowed when sponsors speak. Unlike every other speaker who presents at IMFAR, sponsors are considered to be above any kind of questioning or criticism.

This should not happen at a research conference. Nobody should be able to buy time to say whatever they wish, then refuse to take questions.

My suggestion is that if sponsors are to be given such a prominent place in the IMFAR schedule, they should be required to answer questions about the information and positions they put forward.

Regards,

Michelle Dawson
Autism Specialized Clinic
Riviere-des-Prairies Hospital
University of Montreal

Autistic strengths at IMFAR 2009

The International Meeting for Autism Research was held in Chicago this year, from May 7-9. This was the biggest IMFAR to date, with more than 1350 attendees. IMFAR is organized by the International Society for Autism Research; the main purpose is to provide an opportunity for researchers across all autism-related fields and from around the world to meet once a year and exchange information.

You can find the IMFAR 2009 program and abstracts, in different formats, via this page. Archives of abstracts from previous years can be found here.

This year I was involved in two abstracts. You can find them here and here. The first is below; the information in this abstract was updated, and therefore was slightly different, in the IMFAR poster we presented.

------------------------------------------------------

Where Autistics Excel: Compiling An Inventory of Autistic Cognitive Strengths

M. Dawson & L. Mottron, Centre d'excellence en troubles envahissants du développement de l'Université de Montréal (CETEDUM), Montréal, QC, Canada

Background: Until recently, there has been little interest in autistic cognitive strengths. Instead, autistic strengths revealed through comparisons between the performance of autistic and nonautistic individuals on various tasks have been largely reported or interpreted as evidence for autistic cognitive deficits (Baron-Cohen, 2005; Gernsbacher et al., 2006; Mottron et al., 2008). Also, there is currently no compilation of empirically documented autistic cognitive strengths as reported in the existing literature. Accordingly, little is known about the full range and quantity of autistic cognitive strengths or the variety and number of autistic individuals in which these strengths have been found.

Objectives: Our aim was to further understanding of cognitive strengths in the autistic population by identifying, quantifying and characterizing existing studies reporting these strengths.

Methods: We located and characterized papers published in peer-reviewed journals which reported autistic cognitive strengths. In order to be included, studies had to compare the performance of autistics to the performance of nonautistics on a task, and autistics had to be reported to perform better than their controls on the task. Studies specific to autistic savants and hyperlexics were excluded, as were probable but unclear reports of autistic strengths, and accidental findings arising from matching strategies. Autistic cognitive strengths originally reported and/or interpreted as deficits were included.

Results: In total, 52 distinct types of autistic cognitive strengths were found, reported in 71 papers (12 reporting two or more strength types) spanning from the 1970s to the present. Only 13 papers published prior to 2000 reported strengths, but at least five papers reporting strengths have been published every year starting in 2000, with the highest number per year in 2008 (N=13). Twelve of the 52 strength types were reported in at least two, and up to 10, papers, with the most replicated finding being superior performance in embedded figures tasks. While most strengths (N=36) were found via tasks using nonsocial information, several strengths involving social information (N=8) and language (N=7) were reported. Sample size for autistic groups ranged from 3 to 40, with a mean of 16, while mean age of autistic participants within samples ranged from 2 to 39 years. Total number of autistics, encompassing 81 different samples, was 1351, of whom 885 had the specific diagnosis of autism, while 130 were diagnosed with Asperger syndrome, and 336 were in the general “ASD” category. Of the 71 papers, 25 included autistic individuals judged to be intellectually disabled according to commonly used instruments, and 29 reported or interpreted one or more findings of autistic cognitive strengths as one or more deficits.

Conclusions: Numerous distinct autistic cognitive strengths, some of them highly replicated, in a wide range of areas, and displayed by a large number and great variety of autistic individuals, have been reported in the literature. Failing to acknowledge the importance of autistic cognitive strengths may impede efforts to understand autistic differences and assist autistic individuals. We recommend more consistent and transparent reporting and interpretation of autistic cognitive strengths and more attention to their importance.

Autism and talent: Why?

Last year, the British Academy and Royal Society held a two-day discussion meeting called "Autism and Talent" which became the basis for a recently published wide-ranging special issue of the journal Philosophical Transactions B.

Francesca Happé and Uta Frith, who organized the discussion meeting, write in the special issue's editorial that although "the association of autism with special talent, sometimes at the highest level, cannot be denied" it remains true that "special talents are still less researched and less well understood than other features of autism."

The long-standing lack of interest in what autistics do well is understated. For example, the commonly reported estimate that 10% of autistics have savant abilities dates back to a book chapter, involving an informal parent survey, published more than 30 years ago. If anything, the "Autism and Talent" special issue highlights the current, ongoing state of ignorance about the strong abilities that have been noted in autistics from the outset (Kanner, 1943; Asperger, 1944/1991; Scheerer et al., 1945).

In their special issue paper, Pat Howlin and her colleagues use very conservative methods to find exceptional skills in about one-third of a group of autistics originally diagnosed between 1950 and 1985. While noting this is "likely to be an underestimate," the authors can only ask, about the "particularly high" "rate of such unusual talents or skills" in autism,

"Why?"

Sixty-some years after unusual autistic abilities were first highlighted in the literature, their extent, nature, and importance remain strikingly neglected as subjects of research. This neglect and consequent ignorance is evident in the special issue. Throughout questions are raised that have long been deemed unimportant or irrelevant and so have largely gone unasked never mind unanswered.

In her paper, Pamela Heaton illuminates the price autistics pay for this long history of willful neglect and ignorance. She points to fascinating new evidence about autistics' advantage in perceiving musical timbre, adding to a wide body of work showing enhanced auditory pitch processing in autism. She shows that autistics "who do not meet criteria for savant skills... nevertheless possess considerable, but often unexploited, musical potential." And she concludes that autistics are being denied opportunities to develop their strong interests and abilities.

Our paper in the special issue (Mottron et al., 2009) proposes ways in which autistics' measurably atypical cognitive processes may--given the opportunity--lead to the development of savant abilities, which we see as autistic expertise. Again we have to note the fall-out from researchers' long-standing indifference to how autistics learn well:

However, it must also be acknowledged that the information autistics require in order to choose and generalize any given interest is likely to be atypical in many respects (in that this may not be the information that non-autistics would require), and may not be freely or at all available. In addition, the atypical ways in which autistics and savants learn well have attracted little interest and are as yet poorly studied and understood, such that we remain ignorant as to the best ways in which to teach these individuals (Dawson et al. 2008). Therefore, a failure to provide autistics or savants with the kinds of information and opportunities from which they can learn well must also be considered as explaining apparent limitations in the interests and abilities of savant and non-savant autistics

This account is in keeping with the failure of researchers to find consistent predictors of outcome among the characteristics of autistic individuals on which researchers have concentrated their attention (Howlin, 2005).

Kate Plaisted Grant and her colleague Greg Davis highlight in their paper, as we do in ours, how profoundly atypical autistic minds are. They conclude there is much to gain, for autistics and nonautistics, in acknowledging, understanding and encouraging autistics' strong abilities:

Research such as that described here makes this important point: savant abilities are relatively rare, but the skills observed in individuals with ASCs [autistic spectrum conditions] in many studies are common among the population with ASCs. These skills need as much training and encouragement as is given to any individual with talent in detailed processing, mathematics, engineering, design and so on. With such dedicated training, society, business and industry will reap the great benefits of the unusual minds of individuals with ASCs.

The "Autism and Talent" discussion meeting and special issue, as well as a more recent British Academy and Royal Society panel discussion on the same subject, are small steps in the right direction. For much too long, autistics' strong abilities have been prejudicially regarded and treated as aberrant and dysfunctional excesses and deficits, which only impede the acquisition of socially-valued typical behaviours. Sixty-some years on, long overdue recognition of the importance of autistics' strong abilities is finally emerging. So is interest in how these abilities might be encouraged--rather than eliminated.


References:

Asperger, H. (1944/1991). 'Autistic psychopathology' in childhood (Frith, U., Trans.). In: Frith, U.(Ed.), Autism and Asperger Syndrome (pp. 37-92). Cambridge, UK: Cambridge University Press.

Dawson, M., Mottron, L., & Gernsbacher, M. A. (2008). Learning in autism. In J. H. Byrne (Series Ed.) & H. Roediger (Vol. Ed.), Learning and memory: A comprehensive reference: Cognitive Psychology (pp. 759-772). New York: Elsevier.

Heaton, P. (2009). Assessing musical skills in autistic children who are not savants Philosophical Transactions of the Royal Society B: Biological Sciences, 364 (1522), 1443-1447 DOI: 10.1098/rstb.2008.0327

Howlin, P. (2005). Outcomes in autism spectrum disorders. In: Volkmar, F.R., Paul, R., Klin, A.,Cohen, D. (Eds.), Handbook of Autism and Pervasive Developmental Disorders (pp. 201-220). Hoboken, NJ: Wiley.

Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2009). Savant skills in autism: psychometric approaches and parental reports Philosophical Transactions of the Royal Society B: Biological Sciences, 364 (1522), 1359-1367 DOI: 10.1098/rstb.2008.0328

Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217-250.

Mottron, L., Dawson, M., & Soulières, I. (2009). Enhanced perception in savant syndrome: Patterns, structure and creativity. Philosophical Transactions of the Royal Society B: Biological Sciences, 364, 1385-1391.

Plaisted-Grant, K., & Davis, G. (2009). Perception and apperception in autism: rejecting the inverse assumption. Philosophical Transactions of the Royal Society B: Biological Sciences, 364, 1393-1389.

Scheerer, M., Rothmann, E., & Goldstein, K. (1945). A case of “idiot-savant”: An experimental study of personality organization. Psychological Monographs, 58, 1-63.

Elizabeth Svoboda's autism culture movement: A letter

Dear Ms Svoboda,

I've read your article about the so-called "autism culture movement," something I am not involved in. In this article my actions are falsely characterized then commented on. At no point was I contacted or interviewed.

Apart from placing me in a movement I don't belong to, and falsely characterizing me as a "crusader," you misrepresent both the nature of Auton and my role in it. In Auton at the Supreme Court of Canada, I opposed both sides, and both sides opposed my intervention.

My position in Auton was about autistic people in Canada who, like me, have not received ABA-based interventions starting very early in life (for many reasons, including that we are too old). This would be most autistic people in Canada. Both sides in Auton, as well as the lower court decisions, dehumanized and wrote off this majority of autistics as doomed, as undeserving of consideration as human beings with human rights, and as belonging not in families or society but in institutions.

My stated role in Auton at the SCC was as one autistic person. Through the lower courts and up to the Supreme Court of Canada, both sides in Auton, as well as the lower court judges, agreed that not one autistic person should have a say in the proceedings--proceedings which engaged Canada's highest law, our Charter of Rights and Freedoms.

Starting before the Auton SCC hearing in 2004, I made my position in Auton fully public, posting online all relevant documents. My intervention was based on the lower court decisions, the 5,000-page evidentiary record, and the applications, responses, replies, and/or written and oral arguments of the parties and other interveners. That is, I was responding to the case as it existed as a Charter case (engaging Canada's highest law, our Charter of Rights and Freedoms), not to some generic demand for ABA services. As with interventions by others in many other cases, the purpose of my intervention was to provide the Court with information it did not already have.

The SCC decision was not based on my intervention but on the failure of the Auton parents to make their case. The premise of the Auton parents was that all "medically necessary" services in Canada are publicly funded for everyone, but this premise is false. Because of this and other major errors on their part, the Auton parents lost. My intervention is mentioned in the SCC decision (though not very accurately), so it was likely influential in some way, possibly in alerting the Court that the two sides in this case--which entirely agreed with each other in excluding, dehumanizing and writing off autistics--were not the whole story.

In your article it is falsely and uncritically assumed that US and Canadian laws and ABA-related legal issues are the same. This is not the case. The way laws have been used in ABA litigation differs by country and has changed across time, with numerous contradictory claims being made (one example here). In Canada, ABA litigation has engaged virtually all of Canada's major human rights laws. The legal status of autistics in Canada has been determined almost entirely through ABA litigation and autistics daily live the consequences.

While I have learned a lot since 2004, the basis of my position in Auton is still the position I take now. Here it is:

1. Autistics are human beings with human rights.

2. Autistics deserve to benefit from and be protected by recognized standards of science and ethics, including professional ethics. These are the standards that automatically protect and benefit nonautistics, and without which they could not proceed safely in society, much less have good outcomes.

3. Services for autistics, whatever those services may be, should be asked for accurately (with respect to the existing scientific literature), ethically, and respectfully.

That's all. In Canada, those demanding ABA services have been unable or unwilling to do so accurately, ethically and respectfully. They could have chosen otherwise. For example, they could have chosen to take the position that autistics deserve recognized standards of science and ethics. If they had, Canada would be a much different--better and safer--place for autistics.

My experience in human rights cases arises not from anything remotely related to the "autism culture movement" or any "crusade" as you falsely claim, but from my error in disclosing my diagnosis to my employer. This not only destroyed my (long, exemplary--according to my employer) blue collar career, it put me in danger. It took almost ten years and a lot of legal work to mitigate some of the damage.

I recently won the first autism-related case referred to the Canadian Human Rights Tribunal for a hearing. Because of jurisprudence arising from ABA litigation in Canada, particularly Auton, and how this enshrined legal status of autistics has influenced the Tribunal, I had to ask the Tribunal to rule on whether autistics were regarded as human under the Canadian Human Rights Act.

This was not "crusading," as you misrepresent it, much less anything related to any supposed "autism culture movement." The numerous actions taken by my employer in response to knowing I was autistic were so extreme (though they are typical of how autistics--the majority of us who have not undergone ABA programs starting early in life--are regarded and treated in Canada), I did not have much choice.

I've gone on to take the risk of testing my ideas about autism via peer-review, and to show what an uneducated autistic (who has the behaviours and lacks the basic skills routinely invoked to scare people about autism) can contribute to autism research, given the opportunity. My publication record is nothing special, but it is not too bad for someone who has never attended university as a student, who has truly spectacular day-to-day difficulties, and who has been written off numerous times.

I disagree with many of the statements made about ABA-based autism interventions in your article--on both supposed "sides." I have criticized as inadequate, inaccurate and harmful many of the popular criticisms of ABA-based autism interventions. I disagree with ASAN's overall position about ABA, which in many areas is poorly informed and ignores the major underlying issue of quality of intervention research. At the same time, ABA as an approach to autism has been defended by its promoters as though it were an ideology, as sacrosanct and above scrutiny and criticism. ABA is supposed to be a field of science. The poverty of how ABA-based interventions have been both criticized and defended demonstrates the poor standards of science and ethics that are routinely promoted as what autistics deserve.

If you asked, I would tell you that "cultural phenomenon" views of autism have been harmful to autistics, detracting from crucial issues of basic human rights and standards. You won't find "neurotypical" much less "curebie" in my writing, and I sometimes disagree with ASAN's public positions and recommendations (for example, with respect to ABA-based autism interventions and autism research priorities). I have never claimed to represent other autistics, unless individual autistics have specifically given me this privilege.

At the very basic level where I function, representation is beside the point. The issues that matter involve attempts, by those promoting ABA-based interventions and others similar, to remove the basic human rights of autistics (for example, those of us who have not undergone ABA programs starting early in life), and to deny us recognized standards of science and ethics. Anyone is free to deny their own basic human rights, and to deny themselves the basic standards that exist to protect and benefit everyone. But denying basic human rights and basic standards to others is another story.

I wrote virtually nothing about "neurodiversity" until those unfamiliar with my work persistently associated me with it. In response I defined neurodiversity as part of the general idea that disabled people should have human rights--mainstream and noncontroversial except when the disabled people are autistic. I suspect people on both supposed "sides" disagree with this definition, but I don't have a "side," much less a "crusade" and do not have what it takes to be part of any "movement" much less a cultural one.

The standards currently applied to autistics are such that you are free to misrepresent me, and major legal decisions and issues, and so on, all you want. There's nothing I can do except put accurate information on the record, again, even though it has been here all along, for anyone who takes autism seriously.

Regards,

Michelle Dawson
Autism Specialized Clinic
Riviere-des-Prairies Hospital
University of Montreal

Postscript: Sharon at The Voyage blogs about "Autism Culture in Salon."

Autism under the sun: Epidemiology from Aruba

A recently epublished paper reports autism epidemiology in Aruba (van Balkom et al., in press). The findings: autism prevalence of ~19/10,000 and autistic spectrum prevalence of ~53/10,000 (of which only ~2/10,000 Asperger individuals were identified). Because case finding methods were very conservative and limited, the authors state that:

These prevalence estimates should be considered minimum prevalence.

Even so, these figures are

similar to recent reports from the United Kingdom and the United States.

For example, the combined Chakrabarti and Fombonne (2001, 2005) studies reported autism prevalance of ~19/10,000 and autistic spectrum prevalence of ~61/10,000. Very similar figures from the UK were recently found by Williams et al. (2008). In fact the reported minimum autistic spectrum prevalence in Aruba is noticeably similar to reported autistic spectrum prevalence in the Faroe Islands (~56/10,000; Ellefsen et al., 2007).

I am no climatologist, but all available reports converge on Aruba, which sits not too far from the equator, being a remarkably sunny and dry place. This is not the case for the Faroe Islands, which have a cloudy, rainy, foggy climate where sunshine is rare.

Speculation that lack of sun exposure may cause autism via Vitamin D deficiency is back in the media, providing a reminder that Michael Waldman and his Cornell colleagues persist in claiming that less precipitation means fewer autistics. Aruba's recent autism epidemiology sheds some bright light on these hypotheses.


References:

Chakrabarti, S., & Fombonne, E. (2001). Pervasive developmental disorders in preschool children. JAMA, 285, 3093-9.

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

Ellefsen, A., Kampmann, H., Billstedt, E., Gillberg, I.C., & Gillberg, C. (2007). Autism in the Faroe Islands: an epidemiological study. Journal of Autism and Developmental Disorders, 37, 437-44.

Balkom, I., Bresnahan, M., Vogtländer, M., Hoeken, D., Minderaa, R., Susser, E., & Hoek, H. (2009). Prevalence of treated autism spectrum disorders in Aruba Journal of Neurodevelopmental Disorders DOI: 10.1007/s11689-009-9011-1

Waldman, M., Nicholson, S., Adilov, N., & Williams, J. (2008). Autism prevalence and precipitation rates in California, Oregon, and Washington counties. Archives of Pediatrics and Adolescent Medicine, 162, 1026-34.

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.

Definitely not autism advocacy: the People First ribbon

People First attended the recent autism conference in Halifax, where their work was featured in my presentation. Here is the information People First provides with their black and yellow ribbon pins:

We wear these ribbons to let Canadians know that too many people are still locked in institutions.

We are horrified that Canadians keep institutions open. We are angry that new kinds of institutions are being built.

The black ribbon is because people in institutions are not safe. Many have died. We mourn their deaths.

The yellow ribbon is for liberation--we want all people in institutions to step into freedom.

All people regardless of the severity of their disabilities should live in the community with the support they need.

Here is how People First defines institutions:

An institution is any place in which people who have been labelled as having an intellectual disability are isolated, segregated and/or congregated. An institution is any place in which people do not have, or are not allowed to exercise control over their lives and their day to day decisions. An institution is not defined merely by its size.

Meanwhile, autism advocacy leaders in Canada have long insisted that autistics just naturally belong in institutions, a view which in consequence is enshrined in Canadian jurisprudence, under Canada's highest law:

Unless their condition is successfully treated, almost all autistic children are doomed to a life of physical, emotional, social, and intellectual isolation and eventual institutionalization - a tragic outcome for the children, their families, and society.

Here "successfully treated" means undergoing unlimited ABA-based autism interventions starting very early in life. Most autistics in Canada cannot meet this requirement, ergo autism advocates claim there is no choice except to lock us in institutions for our own good and the good of society. Canada's most powerful autism advocacy organization, FEAT (also known as "Medicare for Autism Now!"), adds that we must live in restraints and have our teeth pulled.

Canadian Senator Jim Munson, who has publicly supported FEAT, has used his power and influence to make it widely known that autistics' natural place is not in society or communities or families or the workplace but in institutions. Like other leading autism advocacy organizations and individuals, Senator Munson is insulting and undermining the very important hard work and achievements of People First.

Autistic children in tiny, windowless rooms

Two UK sources, here and here, report the same story: a young autistic girl, Melanie-Rose Wichmann, was "shut in a tiny, windowless room for getting upset at school." She "begged to be let out." She "has suffered anxiety attacks since the incident in February last year."

A judge ruled that shutting Melanie-Rose in that "tiny, windowless room" was discrimination based on her disability. An autistic child "should not have been left, even briefly and for the best of motives, alone in a small room from which she could not get out."

Melanie-Rose's mother is quoted as saying: "I know that despite what anyone says, regardless of their disability, you don't treat children like this. I wanted to fight this no matter what. I wanted to fight for her and for all the other kids out there in similar situations."

Not so long ago, the Boston Globe reported on practices at the New England Center for Children, a school that uses ABA-based interventions with autistic individuals. The NECC is one of the most admired, most popular, most important, and most influential (in research and practice) ABA schools in the world. Here is how the Boston Globe story starts:

When a particular student acts up, Amy Giles sometimes places the girl in a tiny, windowless room and closes the door. Then Giles stands outside the closet-like chamber, waiting patiently until the child settles down.

If it were another child, it might seem cruel. But Giles, a Westborough resident, is probably that student's best chance for a quality education. Giles teaches at the New England Center for Children on Route 9 in Southborough, a school that is at the forefront of educating children with autism, a neurological disorder that dramatically inhibits the way a child learns.

"We don't want to be the biggest program for autism," said Judy Cunniff Serio, director of administration. "We want to be the best."

Smallpox, polio, and autism

A few days ago, Canada's senators were debating a law about autism. According to Senator Wilbert J. Keon, this proposed law, Bill S-210, would establish "World Autism Awareness Day in Canada, to be celebrated each year on April 2."

Senator Keon states:

Through the passage of this bill, we are showing that we truly respect Canadians with autism.

And what is the direction and purpose of this proposed Canadian law, a law to raise autism awareness, by which our government is to show that it truly respects autistic citizens? Senator Keon explains:

We must now do the necessary research to understand what autism is; then we must eliminate it as we did with smallpox and polio.

So parliament's power will be used to spread awareness--to inform schools, families, employers, communities, landlords, governments, and so on--that autism is as frightening and harmful, as dangerous to society and the public good, as smallpox and polio. And just like smallpox and polio, autism must be eliminated--regardless of science and ethics, regardless of the wishes of autistics and/or parents of autistics. According to Senator Keon, who demands a Canada free of autistic people, this is the kind of awareness Bill S-210 is all about.

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.