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THE MISBEHAVIOUR OF BEHAVIOURISTS
by Michelle Dawson
Since the publication of O. Ivar Lovaas' landmark 1987 study, scientific and legal attention has been lavished on Applied Behaviour Analysis as an autism treatment. Dr Lovaas' supporters and opponents, whether principled or opportunist, have been loud, plentiful, prolific, and well-credentialed. But when it comes to the test of ethics, to allotting autistics rudimentary ethical consideration, all sides and factions for and against ABA have persistently and thoroughly failed.
In an investigation of this failure,
diverse aspects of ethical standards in the autism-ABA industry are explored
and compared. A framework emerges suggesting the nature and scope, as well
as the causes and motives, of the unethical treatment of autistics. At
the same time, a narrative emerges. It resonates with the past and current
unethical treatment of other atypical human beings. Since ethics problems
do not spontaneously resolve themselves, instead tending to accumulate
and escalate, the interlocking framework and narrative are put to work.
This results in specific ethical challenges, and some proposed remedies,
for behaviourists of all kinds who have as their goal extinguishing autistic
behaviour, and therefore autistic people.
PART ONE: SEGREGATING ETHICS FROM AUTISM
1. Introducing behaviourists and behaviourist ethics
Not everyone is a behaviourist these days, but so long as the target for behaviour modification is autistic, the ranks are impressive. Apart from the behaviour analysts themselves, autism-ABA adherents include therapists, educators and instructors; parents, grandparents, friends-of-the-family; funding bodies, autism societies, professional and pressure groups; professors, lawyers, judges, and journalists; politicians, bureaucrats, and the Quebec Human Rights Commission. All have failed to notice that they themselves are behaving unethically. Instead, they are taking for granted that any ethical concerns about ABA have already been dealt with and disposed of.
For instance, aversives. When systematically hurting autistic children in ABA programs raised ethical concerns, to the point where laws were passed, ABA became non-aversive: problem solved. The just concerns about continuing physical punishment of autistics in other programs can no longer be used as ammunition against ABA.
Then there is the behaviourist quandary of whether a controlled trial of autism-ABA would be ethical, since the controls would be deprived of this presumed-to-be-effective treatment. ABA goes nowhere without its unique vapour trail of adjectives like "scientifically-proven" and "medically-necessary". Parents and researchers alike have found this sky-writing difficult to resist. In consequence, protocols like randomized assignment and matched controls have been switched from the good science camp to the bad ethics camp: problem solved. An objective observer might notice how circular this logic is, and how expedient.
2. Rhetoric in autism treatment
Another issue has earned the attention of behaviourists. In 1999, the mother of two autistic boys testified before a US bioethics committee. She pleaded that applying ethical standards, in the area of informed consent, to autism research would be harmful to autistics. Her emotional testimony was reported favourably in the newsletter of the Association for Science in Autism Treatment (ASAT), which has been prominent in its support for the autism-ABA industry. ASAT's stringent scientific standards are splashed around its website and newsletter and are integral to its mission. With the authority of its hefty advisory board, ASAT reported that good science and good ethics are incompatible in autism. Further, ethics would be destructive of autism research and the death of hope for parents of autistics everywhere.
More recently, Dr Catherine Maurice tackled a series of autism-ABA ethics questions, about recovery from autism, posed by an on-line journal with "Leadership" in its title. Her stratagem was to substitute in each question the word "cancer" for the word "autism". She sealed her argument by rebranding ABA as chemotherapy, and who's against chemotherapy? This piece of rhetoric then showed up in ASAT's newsletter. When I asked ASAT to explain the scientific basis for equating autism with cancer, they responded with silence, not science.
The behaviourist behaviour of recruiting cancer has also found free reign in legal battles arising from the sheer expense of sustaining the autism-ABA industry. In the Auton case, Canada's ABA legal epic, the autism-equals-cancer statement of Madame Justice Marion Allan echoed and was echoed in the autism-equals-cancer variations of the petitioners and became a media staple. When a judge, or Dr Maurice, or any behaviourist yells cancer, any ethical consideration for autistic people obediently hurries to the nearest exit.
3. False equations and false oppositions
A false opposition is a perversion of reality using an if-then or either-or construction: false in that the opposed entities constitute a non-sequitur, and false in that the existence of any other possibility is denied. False oppositions (if autistic children must be treated ethically then they will be doomed) and false equations (autism equals cancer) have elbowed aside empirical evidence and have become central to the legal, scientific, and popular promotion of the autism-ABA industry.
Here are some more: Autism equals tragedy, suffering, and doom. Either autistic children are successfully treated through early intensive behaviour interventions or they are condemned to a life of isolation and institutionalization. Autism is incompatible with achievement, intelligence, physical and psychological integrity, dignity, autonomy, and learning: either you are autistic or you have access to these possibilities. Either the autistic gets ABA, and comes to resemble a non-autistic, or the autistic is doomed. Autism equals a nuclear bomb, a stroke, diabetes, a terminal illness, being "riddled with pain from a terrible accident", and again, always, cancer. If you are against ABA then you are for institutionalization. If ABA is criticized then children will be destroyed. Autism is incompatible with humanity: either you are autistic or you are human. If an autistic is deprived of ABA then he will end up being thrown to the floor and sat on by four large attendants in a group home.
All these overlapping views were expressed by behaviourist parents, judges, organizations, lawyers, and experts, in documents and in conversation. Here's another one: in Auton, a behaviourist expert witness testified that autism equals AIDS. This equation appears in Justice Allan's decision, which accurately reflects the parade of entirely non-autistic witnesses through her courtroom, as well as the priorities of the lawyers and parties involved. A statement like the following,
"The adult petitioners (and the families of autistic children 'behind the scenes' in this litigation) are remarkable individuals. As parents of autistic children, they have endured emotional and financial hardships and grief unknown to most people. They have exerted tremendous energy educating themselves and others, including physicians, with respect to the nature of the autistic disorder and the efficacy of Early IBI."consistent with Justice Allan's decision in its entirety, expresses automatic and comprehensive biases that in autism can still be called, as racism once was, community standards.
The Auton parents' lawyer Chris Hinkson, in the government's appeal of the parents' victory in Auton, contributed this: "The inability to communicate is one of the hallmarks of autism. These children, left untreated, will be doomed to a life of institutionalization and looking inwardly only." This mosaic of false equations and oppositions, which might equally have been uttered by any of the Auton judges, again and easily prevailed. Any ethical consideration for autistics had long vacated the premises. And while ethics were exiled, as has happened in other times, places, trials, disciplines, and battles, those opposing ABA were preoccupied with other matters.
4. The confounding factor of unethical dissent
Apart from objecting to aversives, autism-ABA opponents have been, it seems, too busy to take on ethics. What they have taken on would fill a phone book: threats to internal and external validity, randomized assignment, differential sex proportions (inadequate chi-square analysis), selection bias, statistical regression, outcome measures, the problem of residual autism and how to detect it, the problem of replication, the perpetual how-many-hours-per-week question, etc., and this just for Dr Lovaas' 1987 study and its 1993 follow-up.
The non-behaviourist-generated scientific criticisms of ABA are mostly indistinguishable, as Dr Lovaas would say, from behaviourist criticisms. Both have at times been tinged with unsuccessfully-disguised awe for the magnitude of Dr Lovaas' accomplishments. It didn't take long after 1987 for developmental theories and treatments of autism to develop behavioural offshoots and practices.
Idealistic protests, unique to non-behaviourists, that discrete trials turned autistic children into robots or trained seals, have been easy targets for the ridicule of the autism-ABA industry. More measured objections to ABA by hold-outs against the behaviourist tide have been marred by vested interests, professional jealousies, and the promotion of scientifically-suspect pet theories and alternative treatments.
In a situation where disregard for ethics is blatant and ongoing, persistently skirting this ommission--either out of self-interest, or to hurl incompetent accusations, or to dissect repeatedly all other possible points of contention at length and in copious detail--becomes in itself unethical.
The work of Dr Frank Gresham has exemplified unethical dissent. He continues to be renowned and widely consulted as a debunker of autism-ABA, but I found his testimony in Auton contradicted this reputation. When I asked for clarity, Dr Gresham confirmed that he is, in his words, the biggest ABA supporter anywhere. He is just locking horns with Dr Lovaas over who is the better scientist. This rivalry has always been about the needs, character, and ambitions of the two opponents and has nothing to do with autistics, never mind ethics.
Dr Gresham also found the idea of autistics being involved or consulted in legal, research, or treatment decisions absurd--like consulting with the mentally-retarded, he said. If anyone at all disagrees with or has ever disagreed with this position, which has always been and continues to be fully manifested in reality, they have kept their dissent to themselves.
The needs of the autism-ABA industry
are well-served by Dr Gresham and the many others who maintain the fiction
that ABA has rigorously been challenged and emerged with a few superficial
scratches. Unethical dissent isn't the whole story, but it has been the
major confounding factor impeding an accurate assessment of ABA through
PART TWO: HISTORY, SCIENCE, PHILOSOPHY, RELIGION
5. UCLA's other early intensive behaviour intervention project
In the 1970's, researchers at UCLA authored peer-reviewed articles about the first successes of their program for transforming the inadequate and inappropriate behaviours of young children.
This behaviour intervention was considered essential for many reasons: the children's disordered behaviours caused emotional distress in their parents; the behaviours were disruptive and judged unacceptable by society and the children's peers; the behaviours also displaced the proper functioning of these children, who were said to be suffering; and intervention at the earliest possible sign of deviant behaviours was necessary since the prognosis for adolescence and adulthood was notoriously poor and treatment later in life was known to be futile.
This project, like many others at the time, was generously funded by the National Institute of Mental Health. The principal investigator, that is the person whose name brought in the funding, was Dr Lovaas. This comprehensive and intensive behaviour intervention used the principles of operant conditioning to displace maladaptive behaviours, which were punished, with more desirable behaviours, which were rewarded. The most effective punishment was found to be spanking or hitting the children.
The reported success of this intervention was unqualified. People seeing videos of one of the children before and after treatment described him as "two different boys"; he now looked and acted like any other boy. The goal of creating children "indistinguishable" from their peers was apparently achieved. The reports of this success generated controversy, requiring Dr Lovaas and the other researchers involved to defend their project and its results.
6. Dr Rekers and his principles
The UCLA project described above was the Feminine Boy Project. Its immediate goal was to replace feminine behaviours (e.g., "maternal nurturance" and playing with girls) with masculine behaviours (e.g., playing with a toy submachine gun and rough-housing with boys) in gender-role-deviant young boys. Its workhorse was Dr Lovaas' student, the young researcher George A. Rekers. And prominent among its long-term goals was preventing homosexuality.
The role of societal intolerance in choosing target behaviours was mentioned in one of the Rekers/Lovaas studies. The authors concluded that it is more realistic to change those hurt by intolerance than to change the intolerant behaviours of society. This position is known to be short-sighted and to extrapolate badly, as many dissenters noticed.
In fact, ethics-based dissent, including from the late ABA pioneer (and defender of Dr Lovaas' work in autism) Donald M. Baer, dominated the considerable criticism generated by this project. Everyone noticed that a project presuming to transform the nature of unconsenting clients through behaviour interventions must be challenged as to its ethics. Criticisms of the FBP's choice of good-male/bad-female behaviours were plentiful. The participation of interested parties, such as transsexuals, homosexuals, transvestites, and feminists was argued to be essential in project decision-making. The impoverishment of society through the eradication of a variety of behaviours and what those possessing them may contribute was mentioned. The assumption that non-heterosexuals are dysfunctional and miserable as adolescents and adults was severely questioned.
Critics barely touched on the issue of aversives, and did not split hairs over data points; instead they highlighted the problem of to whom therapists are responsible. Who do they serve: the client, or the client's parents, or society and its values, or themselves and their own values?
Dr Rekers, Dr Lovaas, and some others responded with their own ethics: "Once parents and professionals have concluded that a boy has a gender disturbance, a therapist cannot ethically refuse to treat the child." Dr Rekers, with two others, added in another defence: "If a parent brings a child to a psychologist and asks that the possibility of homosexual development be prevented, is this not an ethically and professionally proper goal for the psychologist?" Defending his work with Dr Lovaas, Dr Rekers also used the rationales that homosexual behaviour was (in California, at the time) illegal, and that he shared the same Christian values as the parents involved.
This and Dr Rekers' great volume of similar work revealed that his principles were fundamentalist, rather than scientific. He objected to homosexuality being removed from the DSM, and proposed it be returned there. He expressed incredulity and indignation that those having the pathology of homosexuality had any say in its classification and treatment.
The two FBP successes reported in Rekers/Lovaas case studies were found to be bisexual on follow-up. One of these successes had attempted suicide at age 18, after his first homosexual encounter.
When I described the FBP to Dr Gresham, he stated that such a project would not, by his standards, pass ethical review.
For some time the FBP ran concurrently at UCLA with what later became known as the Young Autism Project. While Dr Lovaas, whose FBP NIMH funding terminated in 1976, has wisely distanced himself from the former, the latter has made him a legend. So the problem is not that apparently successful behaviour interventions, and those like Dr Lovaas who develop and implement them, are immune to ethical challenges from behaviourists and others. As demonstrated in Auton, the problem is that Dr Rekers-style intolerance of autistics is the unexceptional norm: it is community standards, it is de rigueur, it resembles--see Dr Maurice's "Let Me Hear Your Voice"--religion.
7. Revisiting aversives
Provocative evidence that intolerance of autistics is embedded in behaviourist views of autism, and of how this intolerance may be manifested, inadvertently emerged from a study designed for entirely another purpose.
In 1991, researchers from Rutgers, including the well-known behaviourists Sandra Harris and Jan Handleman, published a study about the consequences of aversives in autism programs. The study was called "Does punishment hurt? The impact of aversives on the clinician." They compared the morale and job satisfaction of more than 100 staff, divided into those who could use only mild aversives, and those who could use severe aversives on their autistic clients. Severe aversives included (and one assumes were not limited to) "slap, pinch, electric shock, noxious odor, noxious liquid, and hair pull."
Restraints were removed from the scope of this study when no one involved could decide whether their use on autistics constituted a "mild" or "severe" aversive. Clearly, they did not ask an autistic. Nor did anyone notice that autistics had been injured and killed in restraints, which might argue for a classification of "severe".
In any case, the researchers' concern that clinicians routinely applying severe aversives to autistics would suffer for this proved groundless. They found that those applying severe aversives were happiest and reported less job-related stress and greater personal accomplishment. In fact, the longer they had been at it, the more personally accomplished they reported being. The study design could not answer the question why, but the authors made the behaviourist assumption that strong aversives applied to autistics produce the most satisfying results. This would be from the staff point of view. And the authors conclude that "allowing staff to use a wide range of interventions including strong aversives may diminish job stress and enhance one's sense of personal efficacy."
Aversives are no longer supposed to be an issue in autism-ABA, but can they honestly be set aside? The Rutgers researchers' conscientious survey is more evidence that the intolerance lurking in behaviourist false oppositions and false equations, and in emotional accounts like Dr Maurice's, goes right to the core of the autism-ABA industry and its scientific foundations.
8. Science-based claims, or articles of faith?
Autistics cannot communicate. Autistics are incapable of learning from a typical environment. Autistic behaviours and interests are useless and wrong. These are some behaviourist claims at the core of autism-ABA. When this treatment was being developed, intelligence and autism--that is, autistic behaviours--were assumed rarely to co-exist. There have since been radical changes in autism diagnostic criteria and epidemiology which are subversive of most core behaviourist claims about autistics. No commensurate adjustments have been made in the tenets of the autism-ABA industry: tenets which, having been deserted by their scientific basis, remain stubbornly in place as articles of faith.
As I naively pointed out to the behaviour analyst Gina Green, there is no scientific evidence that autistic behaviours are incompatible with intelligence, learning, and achievement. She countered that there exists no proof they are compatible. Untreated intelligent autistics are mere anecdotes, which, in her view, means non-existent. All ABA-deprived autistics are by definition unintelligent, uneducable, and unaccomplished, until the day behaviourists like Dr Green decide to believe, by their criteria, otherwise.
This sort of "science" informs the autism-ABA industry's omnipresent exercise in fiscal coercion, the cost-benefit analysis. In its most popular manifestation, Dr Green and colleagues base their analysis on an elaboration of the articles of faith listed above: all ABA-deprived autistics are a financial burden on society; all ABA-deprived autistics are lifetime liabilities; and all ABA-deprived autistics contribute nothing whatsoever to society.
Similar articles of faith have been imposed on other groups. I couldn't vote until 1940 or deliver the mail until 1980 in the province where I live. This is because, like Dr Green, I'm female. Quebec females did not undergo behaviour modification in order to become intelligent enough to vote or strong and tough enough to deliver the mail circa 1940 and 1980. In fact, we did not change at all. We did not prove anything we hadn't already proven for centuries. But suddenly, we were discovered to have qualities we never had before.
Failing to detect that people with differences have abilities and worth, because they fail to be like those self-designated as exemplifying capability and worth, is a denial of basic human rights. So is the insistence that people with differences prove by the criteria of those without, by the criteria of those who denigrated these differences in the first place, that they are capable and worthy and should not be denigrated and eradicated.
I also naively suggested to Dr Green--who is a mainstay of ASAT and the Behaviour Analyst Certification Board--that parents should accurately be told their autistic child is not more difficult than, but simply different from, a non-autistic child. She vehemently responded that being different is the worst possible thing. The brunt of science and history cohesively argue otherwise, and an abhorrence for human differences is usually spotted as a human rights problem. When acted upon, it is routinely greeted with social, if not legal, censure. Different from whom? Dr Green's non-scientific belief could not achieve credence and respect anywhere but in the context of the autism-ABA industry.
9. Generalizing intolerance across environments
One widespread result of autism-ABA industry articles of faith is the dismantling of autistic people into series of bizarre and inappropriate behaviours. Similar dehumanizing strategies have formed the backbone of human rights violations throughout history. In autism, this behaviourist strategy generalizes effortlessly and unchallenged across all available environments and populations: the scientists, the parents, the courts, the journalists, the next generation.
A recent New Yorker article shows how it's done. It describes in depth one family's recent legal and logistical struggles to get ABA for their two autistic children. A purely behaviourist view of autism, adopted early by both the parents and the journalist, pervades this article. Dr Lovaas' autism work is described with uncritical reverence. The parents are poignantly described through their ordeals and suffering, their despair and determination. Their young non-autistic daughter is easily recognizable as a human being with character, needs, and rights. The two autistic children are either complying with their ABA program, or perceived, described, and treated as oblivious, insensate, monstrous collections of purposeless and repugnant behaviours. Neither the journalist nor the parents nor the behaviourist experts offer any other possibility.
In this context, the non-autistic daughter has a crisis. She is terrified she will "catch" autism. Immediately, she is whisked to a psychiatrist who exerts his expertise in reassuring her that autism cannot be caught. He in effect reassures her that she will never, ever be anything at all like her autistic brother or autistic sister. She then writes a letter to this psychiatrist begging him to "hurry up and cure autism before the sun goes down", demonstrating that while autism is not a contagion, intolerance is.
There is no immunity. The Quebec Human Rights Commission was infected in 2001 and still is. They decided to intervene in support of a class action by parents insisting that autistics are doomed without ABA. The extreme behaviourist views of the parents, consistent with Dr Green's, easily repelled real scrutiny of the issues and apparently led the commission to believe in the non-existence of autistics able to think and speak freely. In its legal and public position, this human rights commission sees autistics as catastrophic collections of defects, rather than as human beings possessed of human rights.
10. Serendipity and the hilarious accident
The élite of the autism-ABA industry have determined that autism does not exist at all. It is, as Dr Lovaas and his UCLA colleagues declare in their Clarifying Comments (2000) paper, a misleading hypothesis which must be rejected.
In what the behaviour analyst James Mulick calls a "hilarious accident", Kanner observed "symptoms" common to a few boys who came into his care, and leaped erroneously to the conclusion that these behaviours were related to some underlying organizing idea or central difference. Sixty years later, this idea or difference, or any effective treatment or plausible cause related to either, has failed to materialize. The conclusion is that Kanner was sadly mistaken (they do not say whether Asperger was equally and simultaneously mistaken), and that inappropriate behaviours are more effectively treated as such rather than as part of an entity, autism, which is merely a social construct. There are no autistic people: their existence is an unfortunate, widespread societal delusion. Rather, there are organisms emitting inadequate behaviours. Once this is understood, research can forge ahead unimpeded by false notions and unproductive restrictions, and better behavioural treatments for the afflicted emitters are promised.
Ignoring the creative ethics required so that Dr Mulick, for example, can promote in public and in court the "scientifically-proven" treatment for a diagnosis he, the scientist providing the proof, insists is a scientific gaffe--and setting briefly aside the ethical fall-out of further divorcing behaviours from behavers--and forgetting for the moment the ethical quagmire of determining who the now-denatured emitters should be and how they should behave--what would happen to non-autistics treated this way?
A boy has abnormal gaze, no eye contact, does not point, is unresponsive to familiar people, has rigid rituals involving the placement and manipulation of objects, and reacts inappropriately to small changes. ABA seems indicated, before it's too late. I've seen reported a case where an autistic child spent a year in an ABA program being drilled in how to point, and this treatment largely failed. The boy I describe would also fail, year after year, because like the autistic, he has no use for pointing or appropriate gaze or eye contact. He is blind. Scientists denying the presence of a central difference or organizing idea guiding this boy's behaviours would not be admired.
In the early 90's, a trio of children with autistic behaviours got the full ABA treatment from the very best, including Dr Lovaas. He, Tristram Smith, and Morten Klevstrand reported on the results in 1995. The treatment was an utter failure; the one girl who showed any progress in any area concurrently regressed so drastically in others that the authors seemed actually distressed. The children, who started with low intelligence scores, finished untestable after thousands of hours of intensive behaviour intervention. They did not recover or become indistinguishable from peers designated as typical.
A few years earlier, Dr Lovaas had written, in a retrospective of his work in autism, about the important elements of this work. An essential aspect was serendipity. In autism, this led eventually to the serendipitous discovery that an intensive, relentless behaviour intervention applied to very young autistics resulted in unprecedented--in any kind of children--gains in measured intelligence. Given what was presumed by behaviourists about autism, this intelligence was seen as coming from Dr Lovaas, not from the autistics.
The three children, however, were not impressed. They remained themselves. They had been diagnosed as autistic, the requisite behaviours being observably in place. This turned out to be an error; they had Rett syndrome, but the behaviourists, spotting an opportunity, went ahead anyway. They didn't care about the radical differences between Rett syndrome and autism in genetics, anatomy, development, cognition--the behaviours were autistic and autistic behaviours were, they knew, treatable. I noticed that while Dr Lovaas and colleagues have never acknowledged progress through the natural course of development in autism, they did so in Rett syndrome in this study. In any case, serendipity did not strike again. Dr Lovaas and his colleagues did not make these three girls typically intelligent and did not make them typically behave.
The girls with Rett syndrome experienced the pervasive ethical poverty usually reserved for autistics. Apart from the comprehensive failure of their arduous treatment, they failed to teach Dr Lovaas and Dr Mulick and their followers that the diagnosis of autism must be respected. The failure of researchers, behaviourist and otherwise, to define exactly what autism is cannot credibly be ascribed to the non-existence of autism. Instead the evidence suggests this scientific poverty is related to the ethical poverty. The evidence suggests that autism remains an unknown quantity due to the ongoing non-existence of autistics, in science and in society, as human beings with rights.
11. Do autistics deserve ethics?
It is time to answer the question of whether autistics should get ethical consideration, in the autism-ABA industry and more generally in science and in society. This is really two questions. The first comes from ASAT's position: are ethics bad for autistics?
Behaviourists often call themselves empiricists to call attention to their fondness of and adherence to empirical evidence. Using these standards, ASAT's position can't be defended. There is no way to know what would happen if autistics were treated ethically in the area of consent, because, in the ABA research and treatment ASAT promotes, this has not happened yet. The autism-ABA industry has never come to grips with the serious ethical issues that arise whenever powerful behaviour therapies are imposed on clients who can't consent. Until this happens, it remains equally valid to propose that ethical standards might improve not only the outcome for autistics, but the state of the science.
The second question is whether autistics are human beings with human rights. There are all kinds of rights, but human rights are those claimable by and essential to all humans. At first glance this question is impossible to argue on the facts. I'm an untreated diagnosed autistic. How do I prove I'm human? And should I have to?
A second look bases the answer on what happens to human beings whose human rights are denied. Historically, it has been arduous, expensive, and ultimately futile to study and develop treatments for persons who have no human rights. Science also has a bad history of conjuring experiments, evidence, and data to prove that prevailing prejudices are justified. We did not find out a lot about women until women became human beings with human rights. Instead, we found out about the researchers and the societies they served. Past attempts to treat the many defects of womanhood now look grotesque and contemptible. So do the research and treatments directed at different races, abilities, and orientations before these differences were recognized as being intrinsic to human beings with human rights.
After elbowing aside all the conspicuously
non-empirical behaviourist false equations, false oppositions, and articles
of faith, the real evidence predicts that regardless of how diligent scientists
are in every other respect, if the human beings who they study and
treat are denied human rights then this study and treatment can be considered
neither ethical nor scientific. Further, evaluating the scientific validity
or "success" of the results of this kind of science is impossible.
PART THREE: A SHORT LIST OF SPECIFIC ETHICAL CHALLENGES
12. Aversives again, and the ethics of 47%
Autism-ABA would not easily have become an industry in the absence of Dr Lovaas' famous 47%. None of the objections to this figure--which is reported as gospel in the media, in the courts, by researchers, by autism societies, and by pressure groups--has been effective and none has been about ethics.
47% represents the best outcomes of Dr Lovaas' 1987 study, the 9 out of 19 pre-school autistic children in his experimental group who underwent 40 hours of ABA per week for two or more years. At the end of therapy they were reported to have "recovered" and become indistinguishable from their typical peers. They maintained this result through a battery of tests at the 1993 follow-up. Of the 40 children in two different control groups, the first getting 10 hours of ABA per week and the second drawn from existing cases in the community, only one from the second group tested as "recovered" in 1987.
This study design left Dr Lovaas vulnerable to arguments about placebo variables, there being no way of knowing which, if any, part of the experimental treatment was the effective part. To remedy this, he conducted a study-within-the-study in order to confirm that one component of the treatment was an "active ingredient". The chosen component, which was applied only to the experimental group in the main study, was in the internal study manipulated in four children from the experimental group and four from the first control group. In the absence of this component, improvements in behaviour were described by Dr Lovaas as small, unstable, and insufficient. Introducing this component resulted in "sudden and stable" desirable changes across environments, in both the experimental and the control subjects. This component was the use of contingent aversives.
In a confluence of poor ethics and dishonest science, the autism-ABA industry has downplayed and even denied the importance of aversives in achieving the famous 47%. Dr Lovaas' 1987 study in fact emphasizes the importance and effectiveness of aversives, the sole scientifically-proven "active ingredient" which, outside of the "within-subjects replication design" described above, were not used on the controls. In spite of this, the denial of the facts of Dr Lovaas' study and the disregard for the implications of this denial persist.
For example, Glen Sallows, a former student of Dr Lovaas' who directs the corporate outgrowth (the Wisconsin Early Autism Project) of a YAP replication site, supports in his writing the view that aversives were unimportant in Dr Lovaas' 1987 results. Dr Sallows is then in the position, as many others are, of claiming that while Dr Lovaas' science is excellent in all other respects, his study design and conclusions about aversives are totally wrong. And if Dr Sallows, and the many others, take their ethics seriously, they must point out that Dr Lovaas had all those kids hit for nothing, gratuitously, since he decided to use, and highlight the use of, aversives instead of exploring the equally-effective option (the treatment without aversives) available.
Dr Lovaas' own position remains the same as in the 1987 study. In the Clarifying Comments (2000) paper, the recent illegality of aversives (in many jurisdictions, including California) and their consequent withdrawal from ABA are cited as reasons his 1987 results have not been replicated. This position made it into Justice Allan's decision in Auton, the judge noticing neither its scientific nor its ethical implications. Dr Lovaas, when I spoke with him in 2003, frankly stated that getting results without aversives was a lot more difficult. Dr Smith agreed when I attributed Dr Lovaas' spectacular results, versus Dr Smith's much more modest outcomes, to the use of aversives, rather than to something apparently of greater import to these scientists, like randomized assignment.
Those promoting autism-ABA have some choices about using Dr Lovaas' results. First, they can use the 47% with the caveat that this was achieved with, and is scientifically proven to be the result of, the use of aversives and is unlikely according to both the study's author and the study's design to be achieved without them. This seems a fair and ethically-neutral position, but it is not. It draws attention to the effectiveness of aversives, which continue to be legal across Canada and other jurisdictions. It makes their use pragmatically attractive, and therefore tempting to parents, professionals, and governments seeking optimal behavioural and fiscal results. It may be noticed, by cash-strapped parents or governments, that in the "within subjects replication design", aversives were said to achieve similar results ("sudden and stable" improvement) in experimental 40-hours-per-week and control 10-hours-per-week subjects. Given that non-autistics seem already inclined, per the Rutgers study, to derive satisfaction from applying aversives to autistics, adopting a position which makes aversives more appealing is not ethically justifiable.
The second choice is to go ahead and use Lovaas' 47% without accounting for the aversives at all. Behaviourists deciding on this approach will encounter, as Dr Sallows should have, the ethical difficulty that deliberately and systematically hurting children, who by definition cannot consent to this, is a last resort. One is permitted to cut a child open in surgery, for instance, if no alternative is available. If Dr Lovaas' 47% is valid minus aversives, then Dr Lovaas and all others involved in making the decisions about this study behaved unethically. They decided to hurt children while other options were available and remained unexplored. Further, the prominence of aversives in Dr Lovaas' study is well-documented. Both a doctoral dissertation and a paper presented at an Association for Behaviour Analysis convention are cited by Dr Lovaas as describing the successful use of aversives in his "within-subjects replication design". Pretending that aversives were trivial and irrelevant in this context is dishonest, unscientific and unethical.
That leaves a third choice which is entirely ethical. Behaviourists promoting autism-ABA could do so without citing Dr Lovaas' troubling study and its 47% success rate. Other group studies, all with weaker designs and/or results, as well as hand-picked case studies, could then be tested as to whether they are sufficient to make the legal and scientific case for ABA--without, as is now universally done, being used in conjunction with and subordinate to Dr Lovaas' study. There could no longer be court cases such as Auton and media reports--as in the New Yorker, the New York Times, and the Globe and Mail--and arguments from pressure groups--such as FEAT groups, ASAT, and autism societies--which have as their linchpin Dr Lovaas and his unprecedented and unreplicated results.
Behaviourists in all their varieties have mostly made the second choice. This choice is scientifically and ethically untenable. In so choosing, they are violating precepts they claim to exemplify. This kind of behaviour, sustained across time and environments, can only be called inadequate and inappropriate--and indefensible.
13. Deciding how autistics should behave
ABA is hard to argue against. Its behavioural principles are used in teaching all kinds of children basic skills. As an intensive intervention, ABA is agreed to be a powerful therapy. In autism it has the specific benefit of forcing an autistic's adult entourage to behave consistently, rather than emotionally and arbitrarily, towards the child. And certainly there is evidence that autistic children can with time and effort learn skills this way.
Where ABA needs scrutiny is when its power is used to remove odd behaviours which may be useful and necessary to the autistic (such as rocking, flapping, and analytical, rather than social or "imaginative" play); and when typical, expected behaviours which may be stressful, painful, or useless to the autistic (such as pointing, joint attention, appropriate gaze, and eye contact) are imposed.
In a situation where a powerful behaviour therapy is applied to clients unable to consent, the ethical question of which behaviours should be treated should have been asked. Instead, the stated goal of autism-ABA is a "recovered" child indistinguishable from his typical peers.
Societies and scientists have historically made serious errors in determining which kinds of people are acceptable and which behaviours should aggressively be treated. People with differences have been ostracized then forced into mandatory treatments for their own good: left-handed people, and homosexuals, and many others. Societal and scientific assumptions about what constitutes freedom and integrity for disabled people have often been wrong. There exists no reason to believe that our society and its scientists are uniquely immune to these defects.
In autism, no one knows what the central difference or deficit is. No researcher can claim to know which behaviours are adaptive or maladaptive to that unknown central difference. No researcher knows or even has studied the extent to which "inappropriate" autistic behaviours are entangled with, and therefore contributors to, exceptional autistic abilities. No researcher knows or has cared to study the differences between treated (with ABA) autistics who "recover", and untreated (with ABA or anything else) diagnosed autistics who do not "recover"--and regardless of being thoroughly distinguishable, have lives encompassing learning, achievement, intelligence, and autonomy. Behaviourists like Dr Green insist that there is no such thing as this second kind of autistic.
These ethical and human rights aspects of autism-ABA haven't been addressed, and autistics have been excluded from all committees, panels, boards, etc., charged with developing, directing, and assessing ABA research and treatment programs. Behaviourists are free to act unimpeded on their assumption that autistic behaviours--for example, the way we move and play--because they fail to be like non-autistic behaviours, are useless and worthless. ASAT's information library approvingly reports elaborate behaviour interventions designed to remove autistic behaviours. For instance, the whole ABA repertoire is deployed to prevent an autistic from flapping his hands while he is alone. This article admits that autistic behaviours stubbornly persist even when the autistic is unsupervised. When I told Dr Sallows that I flapped my hands I immediately had to reassure him that I did not do this in public. Then I pointed out that different kinds of people, so long as they're not autistic, are allowed to behave according to their differences in public. But you're not allowed to run down the street with a gun, Dr Sallows said. You are when you're the police, I said, and added that blind people, for example, can wave white canes around or take dogs into restaurants. Dr Sallows replied, but they're blind.
Behaviour analysts have always taken parental consent as sufficient to enroll an autistic child in a program designed not to educate, but to transform that child into a different kind of child. Dr Baer and his colleagues noticed, when criticizing Dr Lovaas' work with feminine boys, that parental consent is not always sufficient to protect a child, or a society: a process of ethical review was considered necessary in order to balance interests and mitigate harm. The conflicts-of-interest arising from parents consenting to have their children altered to conform to the parents' wishes have been recognized in other fields. Parents insisting on surgery for a child with Down syndrome, to meet their need for a child whose appearance is typical and stigma-free, would encounter ethical objections. These objections would augment exponentially if parents en masse demanded these procedures be paid for by the public. Parents of babies whose gender is ambiguous used to arbitrarily choose a gender for these infants and have this choice surgically imposed. This is no longer necessarily the case. The tendency of children to reverse their parents' and surgeons' decisions in adolescence became evident. The parents' need to have an indistinguishable child is now considered to be outweighed by the child's need for integrity and self-determination. Whether to choose one gender, and which gender, are decisions now seen as belonging to the child.
In response to concerns about ABA in decades past, a group of behaviour analysts, including Dr Lovaas, produced and published in 1988 an influential position paper called "The Right to Effective Behavioural Treatment". Authorized proxies are considered qualified to make decisions about treatment goals and procedures for unconsenting clients. There are situations in which the authors consider review by both peer and human rights committees necessary. This is where "withholding or implementing treatment involves potential risk." The word "risk" is not defined and may not necessarily cover the autism-ABA industry's contention that autistics are doomed without ABA. In any case, peer review among behaviour analysts has never resulted in respect for the rights of autistics, and the human rights committee proposed by the authors ("consumers, advocates, and other interested citizens") is charged with imposing "community standards". Community standards, developed by and for communities of non-autistics, have resulted in our vilification and rejection as consumers, advocates, and citizens. This is the same intolerance which flourishes in and around behaviourists and behaviourist views of autism.
Ethical review and oversight should have happened in the development and practice of autism-ABA. That it didn't, and still hasn't, is more evidence that unsupervised behaviourists are prone to intolerance towards autistics. Were the autism-ABA industry serious about science and human rights, there would be an ethical review process that includes--seeks out and welcomes--autistics. The goal of the "indistinguishable" child would be rejected and replaced with an objective examination of all behaviours. Autistic behaviours would be found to be compatible with learning, intelligence, and achievement; and these behaviours, however different, would be valued. Society would receive the message that it is all right to be autistic, and that it is all right for an autistic person to be different from a typical person.
14. Autistic intelligence versus non-autistic intelligence
There are autistics with IQ's of 47 and autistics with IQ's of 150. When these scores are divided into their component parts, a unique and characteristic profile of intelligence in autism (Asperger syndrome has its own profile) emerges across all levels of intelligence. Saying that autistics differ from non-autistics in level of intelligence is false, except in that the range in autism is extraordinary. It is accurate to say that in autism, the kind of intelligence is different.
The peaks of ability evident in autistic intelligence have no equivalent, in form or manner of attainment, in non-autistics. Then autistics leverage these peaks into splinter skills, and sometimes into savant abilities. All that seems to be required is for the autistic to have the right kind and quantity of materials to work with. This progression in no way resembles non-autistic ways of learning, and the results, which encompass expertise but surpass it, are not at all equivalent to expertise developed through learning and practice by non-autistics, however talented. A stratification of autistic IQ scores finds that peaks of intelligence are related to baseline, that is non-peak, values such that the higher the baseline, the higher the peaks. No cause and effect can be extracted from this finding, but if I conclude that the "most autistic" profiles are consistent with the highest general levels of intelligence, no evidence is available to contradict me. Mostly, researchers have stayed away from studying intelligence in autism, and have shown little interest (apart from curiosity about savants) in all of the above.
"Intelligence is the biggest hit in autism," Dr Mulick told me, re behaviourist priorities, but he and his colleagues have avoided grappling with autistic intelligence just like everyone else. So no one knows the nature of mental retardation in autism, which is another way of saying no one knows the nature of intelligence in autism. Researchers have nothing to say on this subject, and cannot say if mental retardation is a fact or artifact in autism. That has not stopped anyone from classifying and dividing autistics by the level of an intelligence about which nobody knows anything.
Behaviourists don't have to know about intelligence, or about autistics, to go to work. All they need is to know the principles of behaviourism and to know how the organism, in this case a person, should behave. Serendipity will arise, or it won't. Dr Lovaas concluded from his work that autistics, under very specific conditions, may be able to learn like other organisms, that is, by the principles of operant conditioning. But in a 1994 interview, he describes two young autistic boys (one of under 50 IQ) learning and performing tasks well above their age level which they had barely been taught, or not taught at all. This should have raised pressing questions about autistic intelligence, what kind it is and how to measure it, and how to develop it. Instead, he reiterates that ABA is a slow, plodding, arduous process where each step must be earned through hard work and where progress is incremental. He reiterates that the child must learn everything through explicit drilling, and denies that learning happens or knowledge is acquired otherwise.
Dr Lovaas was right in this apparent contradiction. Autistics can do what non-autistics can't, and we do it regularly, and we do it through implicit learning, which he described rather well for someone who doesn't believe in it. He is also right in that autistics can learn explicitly, but we're so ill-equipped to do so that the procedure is exactly as arduous as he describes. The explicit learning we painstakingly acquire is rigidly adhered to and does not, as Dr Lovaas noticed, generalize across behaviours and environments. If an autistic is to learn explicitly, every behaviour must be taught in every setting. Autistics object to this. Our peaks and splinters and savant tendencies betray us as implicit learners, and it is not surprising that we have to be bribed--or more efficiently, hit--to do what we do worst. The terrible ruckus of the first weeks of ABA is not credibly the result of autistics being dragged out of our supposed private worlds. All the crying and screaming and running away are more plausibly the noise and uproar of a child repeatedly forced to give up her strengths.
This remains conjecture until autistic intelligence comes to be something worth studying, but there is also the problem of the autistics Dr Green claims don't exist. No one, least of all behaviourists, has shown interest in studying how autistics correctly diagnosed at ages two-to-three go on without treatment to develop language, however late, and normal or superior measured intelligence, regardless of having the usual array of autistic behaviours. If this course of development--which is predictably, and falsely, labelled by Dr Lovaas as "spontaneous recovery"--did not happen, there would be no such thing as "high-functioning" autistics. We are, before the age of four, indistinguishable from autistics whose development does not lead to typical language and normal measured intelligence. Measuring intelligence in children who don't talk is an inexact science and differentiating, in early diagnosis, autistics who will without help become "high-functioning" from autistics who won't is impossible.
Autistics who "keep" our diagnoses are clearly learning somehow, without spending 40 hours a week being explicitly drilled. We learn different things in different ways for different reasons with different results, and all this is strikingly complementary to non-autistic learning and achievement. This is not the place to elaborate how the behaviours we insist on keeping and those we repeatedly fail to acquire are consistent with this chain of differences. This is the place to state that it is unethical, and unscientific, a priori to deem untreated autistics unintelligent and unable to learn because our intelligence and our learning fail to be typical. The assumption that autistics have nothing to lose and everything to gain in ABA programs does not conform to the evidence and would not survive ethical scrutiny. The rush towards ever-earlier diagnoses and interventions, on the grounds that "plasticity" in the young brain can be exploited to remove all traces of autism from a child, and eventually from society, contravenes principles of science and of ethical conduct.
15. Best outcomes, worst outcomes
Parents have recruited lawyers and behaviour analysts, and in droves they've gone to the media, the internet, school boards, conferences, governments, human rights commissions, and the courts. They have been thorough. Everywhere, they insist that autistics--with our wrong and useless communication, our wrong and useless learning, our wrong strengths, our wrong weaknesses, our wrong and useless movements and play, our wrong and useless intelligence--are doomed, and not just doomed, but expensively, exorbitantly doomed to the public's great detriment. The only hope, they say, the only escape from doom, is ABA. With ABA, the autistic will learn to learn like a non-autistic does, then to act, play, move, communicate, and think like we should, the way non-autistics do. This is called a best outcome, and the yearning for it has engendered an industry.
The litany of autistic wrongness and uselessness is not an exaggeration of behaviourist views, but simply a compilation, on my part. Parents, and the industry supplying their demands, have met no opposition in widely diffusing their defamation of autistic people. It has been a successful strategy in meeting their needs, financial and otherwise. In order to continue to grow, prosper, and be paid for by the public, the autism-ABA industry has enhanced then exploited the non-autistic horror and dread of autism and autistics. The parents and their industry have marketed autistics as worthless agents of personal, social, and financial destruction. They have used sensationalism, and emotional and fiscal blackmail, and they have been praised and catered to. The industry--which includes lawyers specializing in ABA cases, and Dr Sallows' 800-employee corporation--has grown and prospered.
Auton is an official, permanent and ongoing behaviourist compilation of autistic wrongness and uselessness. Here the only views of autism represented are the behaviourist petitioners saying we are doomed without ABA and the government saying we are doomed no matter what. Auton can be seen as a gathering of the autism-ABA industry and parents, of supply and demand, complete with the important complicity of unethical dissent. In this context, the perfect absence of autistics is simply accurate. We have been ostracized all the way to the Supreme Court and it is not over yet.
The Supreme Court applications in Auton disseminate again the information that only one of 64 autistics shows any improvement without treatment, and almost all of us are languishing in institutions. In both Justice Allan's decision, and with emphasis in the appeal decision, these facts, as many similar condemnations, are applied across the spectrum of autism. I've read the one-in-64 study, which dates back to patients in the fifties who are described as psychotic, and know it is being used dishonestly. Dishonest is not sufficient to describe a new report in the Auton Supreme Court applications in which a behaviourist expert swears that musical talent is wasted on autistics who have not learned conformity and obedience through ABA.
In the autism-ABA industry, as in Auton, autistic abilities and worth are denied in variety of ways. Our possibilities and potential as autistics are also denied, and these articles of faith have been disguised as science and sold as the truth. They are not science. They are human rights violations, and day in day out autistics suffer their consequences.
My fourth ethical challenge to the
autism-ABA industry is directly stated: I challenge behaviourists to realize
that human rights violations do not just damage and destroy their victims.
They also damage those who commit them. Human rights violations compromise
your work, mar your science, and undermine your credibility. They cast
doubt on your successes and call into question your own humanity. You have
decided to deny our rights and our worth to get what you want and this
leads to worst outcomes for everyone.
CONCLUSION: THE RIGHT TO EFFECTIVE ETHICS
Behaviourists are far from the only non-autistics to denigrate and exclude autistics in order to satisfy their needs. Autism-ABA has only ineffectually been challenged by scientists promoting different autism theories and treatments. This is because they cannot pose the ethical challenges representing the strongest criticisms against autism-ABA, being vulnerable to these challenges themselves. Cognitive scientists using expensive technology for autism cliché-verification, or throwing mentally-retarded autistics overboard because they are inconvenient to their theories, would be unlikely to scrutinize behaviourists in ways they have not scrutinized themselves. Certainly, the anti-vaccination, toxic metals, Defeat Autism Now overlapping factions have exceeded in their rhetoric the abuses of the bahaviourists.
But behaviourists have a greater responsibility than these other scientists, or anyone else working in autism. They have used the words "scientifically proven" and "medically necessary", and have successfully imposed them on society. These words are not just adjectives used to sell a service. They have legal and public consequences which have been and will be felt by everyone.
"Scientifically proven" and "medically necessary" are terms that encompass the assumption that the scientific and medical ethics have been accounted for. In autism, these terms are applied to a treatment whose ethics remain unexamined and unchallenged.
Challenging the autism-ABA industry's ethics requires that autistics are seen as human beings with human rights. We do not live in a society that acknowledges this. We are in a society in which autistics have rights only if and when we resemble non-autistics.
This is like being black in a society where blacks have rights so long as they become white. My Member of Parliament recently told me that people casually and automatically assume she would prefer to be white, and incorrectly believe this would be an improvement--so perhaps my analogy is not a false equation. The poverty of autistic social outcomes, regardless of our abilities, is consistent with persons who have no rights and merit no ethical consideration. A treatment to make black people white, on the grounds that being white is statistically much better, is unthinkable in this society, never mind having it funded by taxpayers. We recognize instead that the best and least expensive way to deal with persons who have been denied rights because they are different is to restore these rights. Only when people with differences have legal and human rights can they be ethically researched and ethically helped.
Until this happens in autism, behaviourists
can't evaluate what recovery from autism means and how it might be manifested.
They have no way of knowing whether recovery from autism is a good or a
terrible result. Their criteria are the biased byproducts of human rights
violations and cannot be trusted. In pretending otherwise, behaviourists
are proposing to train autistics in appropriate human behaviours while
themselves displaying some of the most maladaptive human behaviours available.
Notes and sources:
Update: Autism Society Canada, whose URL is supplied several times below, has altered their website as of July, 2005. However, an accurate summary of ASC's positions can be found in their recent press releases here http://web.archive.org/web/20040403214415/http://autismsocietycanada.ca/en/press_releases.html
Title: source, title was inspired by a classic rejoinder to Skinner (Breland K & Breland M 1961); note, ABA is sometimes referred to as EIBI or IBI; and there are ABA offshoots like AVB and PRT which present interesting problems of their own: however, all can be related back to ABA, and the autism-ABA industry.
Introduction: source, Lovaas OI (1987).
#1: P1, note, the QHRC made the public and legal decision to intervene in support of parents in an ABA class action called Ladouceur; Quebec government official in email response to query supported ABA as "scientifically-proven" and as a priority for her government; Massachusetts Governor declared March 1997 "ABA Month", see http://www.featbc.org/files/lobby_and_advocacy/FEATBCbrief.pdf which is instructive in many ways / P2, note, aversives, law to make aversives illegal in California passed in 1991, implementation deadline 1992; sources, phone conversations 03 Sept and 04 Jan 13 with Paul Hinkle, consultant, California Department of Education, also http://eit.otan.dni.us/speced/laws_search/searchDetailsLaws.cfm?id=726&keywords=56523 / P3, sources, many examples available, see Smith T (1999); Begany T (2002) interview with Mulick, including this, "Notably, there was no control group. That, explained Dr. Mulick, is because EIBI has usually produced such promising results that it would be unethical not to offer it to an autistic child for extended periods."; Lisa Simmermon (in phone conversation 03 July) stating for Autism Society Canada of whom she is President that their only ABA ethics concern is depriving the controls of ABA; and from Auton, Justice Allan's decision, "They submit that such replication would be difficult if not impossible. First, given the known outcome of the treatment, it would be difficult to obtain the consent of well informed parents to place their children in the control group during the period of time when the window of opportunity will likely close."; re "scientifically proven" and "medically necessary", these are ubiquitous, suggest Google searches, also e.g., Gernsbacher MA (2003), http://www.featbc.org/ , and http://www.wiautism.com/about.html WEAP's site, which describes ABA as "the only currently researched and proven treatment".
#2: P1, sources, ASAT's website www.asatonline.org ; ASAT newsletters SIAT (Science in Autism Treatment, Spring 1999), ASAT Board Member/Parent Kathy Mannion Testifies Before National Committee on Behalf of Children / P2, sources, Maurice C, Recovery, in Leadership Perspectives in Developmental Disabilities, 2:4 at http://www.mnip-net.org/ddlead.nsf/linkview/Recovery ; and Maurice C, (2001) Recovery: Debate Diminishes Opportunities, SIAT (Summer 2002) / P3, sources, Auton, quote from Justice Allan "It ignores the fact that autism is a medical disability just like cancer is and both require treatment.", many quotes of this in the press, eg, Vancouver Sun, 00 Jul 28, 02 Oct 10, 03 May 16; and re parents' position, 1998 letter http://www.featbc.org/lobby_and_advocacy/letter.html which betrays its caveats by making autism equal cancer anyway, Victoria Times-Colonist 03 May 18, "These children are sick. They have a medical condition. If this was cancer, we wouldn't be having this discussion", Michael Lewis speaking re Auton, president, Autism Society BC, and Vancouver Sun 03 Aug 23, "Imagine giving a child who needs cancer treatment only one third of the cost", Dr Sabrina Freeman, Auton petitioner and president FEAT BC.
#3: P1, sources, a few examples of science eclipsed by rhetoric are in Auton, ASAT/SIAT, Lovaas OI (1993) in which, for example, he describes autistics as "persons with eyes and ears, teeth and toenails, walking around yet presenting few of the behaviors we would call social or human", and Maurice C (1993); for Maurice's importance to the autism-ABA industry, see http://dickmalott.com/autism/history_ba_autism/ and www.behavior.org/autism/Catherine_Maurice.pdf / P2, sources include Auton (from various parties), ASAT/SIAT, FEAT websites, ASC's website and press releases www.autismsocietycanada.ca , Dr Peter Zwack (Vice President, ASC), Freeman, Brigitta von Krosigk (Auton lawyer for the petitioners), Sallows, G Green, Lovaas OI (1993) / P3, source, Auton, the behaviourist expert is Dr Glen Davies, who said, "Providing a number of supportive services to a disorder that with treatment we know that half could recover, is tantamount to withholding treatment and continuing with support and respite services for AIDS patients after a treatment that can cure half of them has been discovered.", emphasis in the text / P4, source, Hinkson reported in Vancouver Sun, 02 Feb 21.
#4: P1, too many sources to list, for an example, Schopler E et al (1989); for an exemplar, Gresham FM & MacMillan DL (1998); for the scope of the opposition, Lovaas, OI (2000); the follow-up is McEachin JJ et al (1993) / P2, many sources, eg, Lovaas OI (2000), Sallows G (1999), for summaries; for an example of ABA in developmental treatments see http://www.abaforum.dk/artikler/2003/sally_rogers.php / P3, sources, Lovaas OI (2000) and Sallows G (1999), also Maurice C both articles as above; for one overview of opposition to ABA see http://www.autcom.org/ ; for a specific approach, see http://home.sprintmail.com/~janettevance/autism_research_institute.htm (warning, there is music); alternative methods proposed by ABA opponents include facilitated communication, auditory and sensory integration, diets and supplements, psychoanalytic approaches like play and holding therapy, as well as better established treatments like TEACCH and DIR/floortime / P5, P6, sources, Gresham FM & MacMillan DL (1998); Lovaas OI (2000); Auton, where Justice Allan used Gresham's testimony to support the petitioners while noting he was the major Crown witness, example from Justice Allan's decision, "As Dr. Gresham stated, 'there is no question that ABA is the treatment of choice for children presenting with autistic disorder based on over 35 years of research in the field.' He emphasized the fact that although replication of the Lovaas study was necessary, treatment should not be delayed awaiting the outcome"; Gresham's comments to me from phone call 03 Aug 28, in which the rivalry was described.
#5: sources, see #6 below.
#6: in general for the FBP, sources, NIH CRISP database (thank you to Morton Ann Gernsbacher for help with this); Rekers GA & Lovaas OI (1974) and Rekers GA, Lovaas OI, Low BP (1974) which are the two studies; Nordyke NS, Baer DM, Etzel BC, Leblanc JM (1977) and Winkler RC (1977) for behaviourist criticisms; rejoinders Rekers GA, Bentler PM, Rosen AC, Lovaas OI (1977), Rosen AC, Rekers GA, Bentler PM (1978), Rekers GA (1977); for Baer's support of Lovaas, Baer DM (1993); re Rekers, the FBP, Christianity, and homosexuality http://www.leaderu.com/jhs/rekers.html , also see www.narth.com/docs/fitz.html ; for the outcomes of the FBP, see Green R (1987), and Burke P (1996) which also criticizes the FBP; for a casual academic discussion of the FBP and its results, see http://homepages.wmich.edu/~malott/malott/malott18.doc ; Gresham from phone conversation 03 Aug 28.
#7: source, Harris S et al (1991).
#8: P1, note, these descriptions of autism are not unique to behaviourists, see conclusion; sources, of many possible examples, Lovaas OI (1987), Lovaas OI (1993), Smith T (1999), Sallows G (1999); Maurice C (1993); Auton as a whole, ASAT/SIAT; phone conversations with G Green 03 Jun 16 and with Sallows 03 Nov 5; re changes in epidemiology/diagnosis, refers to reversal in proportion of autistics assumed to be mentally retarded, from 75% in the seventies (Rutter M 1970), to the opposite situation where across the spectrum (recognition of the spectrum representing change in diagnostic criteria) mental retardation is 26%, and under 8% for PDD-NOS, in one study (Fombonne E & Chakrabarti S, 2001) and estimated as low as 15% across the spectrum in another (Gillberg C & Soderstrom H 2003); within the specific diagnosis of autism, mental retardation is reported as low as 50% (Honda H et al 1996, Kielinen et al 2003); there is 77% "functional use of spontaneous daily phrase speech" at age five across the spectrum from AGRE data, similar numbers in Fombonne E & Chakrabarti S (2001) and from an ongoing study in Wisconsin (Gernsbacher supplied this and the AGRE information) / P2, source, phone conversation with G Green, 03 Jun 16 / P3, sources, the popular cost-benefit analysis is Jacobson JW, Mulick JA, Green G (1998), wherein intelligence in autistics is briefly mentioned then ignored as to its implications by the authors, condensed version of this article at www.behavior.org/autism/autism_costbenefit.cfm ; also see www.autismsocietycanada.ca , where there is more than one ABA-based cost-benefit analysis / P4, sources, the date for women voting is common knowledge, see http://www.niagara.com/~merrwill/vote.html ; the date for women letter carriers working at Canada Post I know from experience: it could be verified through the Canadian Union of Postal Workers / P6, source, phone conversation with G Green 03 Jul 2.
#9: source, New Yorker article Sheehan S (2003) / P4, note, while I found out about the QHRC's intervention in support of the parents in Ladouceur through media reports, I later discovered the extent of the problem (Ladouceur includes the writing off of any autistic older than 6 who has not yet had ABA) inadvertently in conversation with a QHRC lawyer, and in later interactions with the QHRC.
#10: sources for social construction, Lovaas OI (2000); phone conversation with Mulick 03 Jul 10 which is the source of the "hilarious accident" remark; Hacking I (1999) which Lovaas cites to support this view / note, Hacking is an eminent Canadian philosopher whose extraordinary book is interpreted rather differently by the well-known nativist Steven Pinker (Pinker S, 2002) / P3, note, Mulick is frequently an expert witness in ABA trials, a role he played in Auton / P4, source, the boy who couldn't point (who is Portia Iverson's son Dov) in Silberman S (2001) / P5, source, Smith T et al (1995) / P6, source, Lovaas OI (1993) / P7, sources, Smith T et al (1995); for progress through the natural course of development in autism, there are many studies (they have flaws but are instructive) eg, Fecteau S et al (2003) / P8, sources, Smith T et al (1995); Lovaas OI (2000) references the Smith T et al (1995) study without describing it and equally contains the social construction argument against the diagnosis of autism.
#11: source, SIAT re ethics as in #2.
#12: general, sources, Lovaas OI (1987), McEachin JJ et al (1993) / P5, sources, Sallows G (1999); also Mulick in phone conversation 03 Jul 10; note, since with few exceptions the 47% is used without mention of aversives and/or their importance, singling out a few examples is necessary / P6, sources, Lovaas OI (2000); phone conversation with Lovaas, summer 2003; Auton from Justice Allan, "They submit that such replication would be difficult if not impossible. [...] ["First" is reported in #1] Second, at the time of the 1987 study, the therapists used contingent physical aversives - slapping the child on the thigh and saying "no" loudly - in addition to using positive reinforcement techniques such as praising and hugging the child. There is general agreement that current treatment does not, and should not, include the use of physical aversives."; Smith from phone conversation summer 03; "modest outcomes" refers to Smith T et al (2000), where the rate of "recovery" or "best outcome" was 13%, with no significant results in many areas including language (the reported results were changed in an erratum, which has been ignored by scientists of all kinds, see Gernsbacher MA (2003) for accuracy in this area) / P7, source, Harris S et al (1991) / P8, sources, the dissertation is Ackerman AB (1980) The contribution of punishment to the treatment of preschool aged children. Unpublished doctoral dissertation. University of Californa, Los Angeles; the presentation is McEachin JJ & Leaf RB (1984, May) The role of punishment in motivation of autistic children. Paper presented at the convention of the Association for Behavior Analysis, Nashville TN; note, I have not seen these sources, they are cited by Lovaas / P9, sources, Auton; for the New Yorker see #9; the NYT 03 Apr 13, reprinted in the National Post (Canada) 03 Apr 15; the Globe and Mail article 02 Oct 21 is http://www.globeandmail.com/servlet/ArticleNews/printarticle/gam/20021021/UAUTSM .
#13: general, note, parts of this section are based on my position in a letter I was asked to write to the QHRC (03 Jun 27), which they received but have not acknowledged / P5, note, there was near universal agreement among the behaviour analysts I spoke with about these points; sources, G Green from phone conversation 03 Jun 19, also see Jacobson JW et al (1998) and www.behavior.org/autism/autism_costbenefit.cfm for the non-existence of the autistics described / P6, note, there was universal agreement among the behaviour analysts that autistics had not been involved in any way at any time; sources, ASAT information at http://www.asatonline.org/suggreading/articles/stereotypy.htm ; the hand-flapping study is Ringdahl JE et al (2002), the 15-year-old boy is not identified as autistic in the study, but he is by ASAT; Sallows from phone conversation 03 Nov 5 / P7, sources, Baer from Nordyke NS et al (1977); re ambiguous gender, Colapinto J (2000) and Ridley M (2003); note, the Down syndrome analogy is mine, constructed to show the difference between helping and altering. I refer to the reactions it has generated. However, a Canadian Psychological Association official assigned to help me with my ethics questions stated this analogy spontaneously in response to my concerns re ABA. G Green, in phone conversation 03 Jun 16, stated that the parents should be able to impose this surgery on a child / P8, sources, Van Houten R et al (1988); for community standards, see Auton, the New Yorker article, ASAT/SIAT, etc. / P9, note, the absence of ethical review was confirmed by all the behaviour analysts I spoke with; Smith in phone conversation summer 2003 stated he agreed there should be ethical review.
#14: P1, source, re intelligence profiles, Mottron L (2004) and Mottron L et al (2004); notes, the 150-IQ autistic was supplied by the behaviour analyst who assessed her; there are IQ's lower than 47, but in the lower ranges it must be considered, if the tests have fairly been conducted, that apparently autistic behaviours may more accurately belong to a different diagnosis, as in Smith T et al (1995), including in the large category of neurodevelopmental disorders. I don't believe this problem has been studied / P2, source, Mottron L et al (2004) / P3, source, Mulick from phone conversation 03 Jul 10; note, the observations about intelligence are my own / P4, sources, serendipity from Lovaas OI (1993); 1994 interview is in The Advocate, Nov-Dec 1994, by Catherine Johnson; note, one of the boys is described as two or three years old with 47 IQ (he spontaneously spells a word from cards with letters on them). The other is an "extremely self-injurious" boy confined to a state hospital who learns the alphabet in one and a half hours, a feat well above the age level of any child (also mentioned in Lovaas OI, 1993) / P5, sources, for peaks as in P1; for lack of generalization, Lovaas OI (1993); for the crying and screaming, examples, Maurice C (1993), the New Yorker article; notes, I had help from Mottron and Gernsbacher with implicit learning; the peaks and splinters are drawn generally from Mottron's work / P6, sources, G Green's position from phone conversation 03 Jun 16, Jacobson JW et al (1998), and www.behavior.org/autism/autism_costbenefit.cfm; Lovaas in phone conversation summer 03 called me a spontaneous recovery; note, the inability to distinguish autistics at diagnosis has not been formally studied. The information here comes from hundreds of diagnostic interviews conducted by Mottron over many years / P7, source, for very early intervention example see Green G et al (2002).
#15: P2, sources, for fiscal blackmail, see ASC's promise that autistics will take $60 billion out of the Canadian economy, www.autismsocietycanada.ca , www.behavior.org/autism/autism_costbenefit.cfm , and Jacobson JW et al (1998), many other sources; emotional blackmail is represented by but not at all limited to Maurice, all sources above, also see press releases again at www.autismsocietycanada.ca re Canadian Autism Crisis, in which the death of children is threatened; also see SIAT; for example of ABA lawyers see http://www.mayerslaw.com ; Sallow's corporation is WEAP, its magnitude is available at http://sagesoftware.com/pdf/mas/ss/mas_WisconsinEarlyAutism_ss.pdf / P4, sources, the Auton one-in-64 quote, "Without effective treatment, autism is a lifelong affliction that results in the placement of over 90% of untreated children in group homes or other residential facilities. Only one of 64 children will show any improvement without treatment.", text from Justice Allan, emphasis from the appeal judges; the study is Rutter M (1970); the expert is Davies in a letter about one of the infant petitioners, excerpt, "Although musical gifts are sometimes seen in untreated individuals with autism, rarely are these talents functional because of difficulties following directions, playing cooperatively, learning conventions, etc."; notes, Rutter's study is less inaccurately described by Lovaas OI (1987); Rutter's "psychotic" study subjects were gathered between 1950 and 1958. Regardless of the diagnostic and treatment standards of the time, half the 64 autistics developed language before the age of five, and seven after, two at the age of eleven.
Conclusion: P1, sources and notes, cliché-verification refers to face studies using fMRI, for example, see Schultz RT et al (2000) and Hubl D et al (2003), Hubl particularly for the all-encompassing range of conclusions; for a study which supplies yet another conclusion see Gernsbacher MA et al (2003); cliché-verification also refers to fMRI "theory of mind" studies like Castelli F et al (2002); throwing mentally retarded autistics overboard is common, for well-known examples see the work of Simon Baron-Cohen and Tony Attwood; re abuses from other directions, these exist in quantity, for a sample see Seroussi K (2000) and the Schafer Autism Report http://www.sarnet.org/ / P2, P3, note, see #1 for "scientifically proven" and "medically necessary" / P4, sources, for absence of rights, see for example Auton, the charter arguments by the petitioners, and the documents as a whole / P5, source, for poor social outcome in autism regardless of ability, Howlin P (2003); note, thank you to Marlene Jennings.
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Michelle Dawson 2004 | Published January 18, 2004
Revised (Justice Allan's name corrected) January 29, 2004
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