Home | Index | Blog | No Autistics Allowed: Autism Society Canada Speaks For Itself 1. The Auton Case: Application, Opposition, Order 2. The Auton Case: The Intervener's Factum 3. The Many Varieties of Being Written Off - An Argument About Autism As Catastrophe 4. The Auton Case: The Decision of the Supreme Court AN AUTISTIC
VICTORY by Michelle Dawson
(Opening) A. The
Startle Response (Sources, notes, and references)
(Opening) Everything that is said, done, and decided about autism in Canada enmeshes the lives of autistic Canadians. Daily, we live practical and emotional consequences of having our fate in the hands of non-autistic factions quarreling over our treatment. These factions, ABA parents and governments, are indistinguishable in their convictions about our place, worth, and rights as autistics. For example, their refusal to consider us as equals is identical. So is their adherence to the premise that autistics are inherently doomed. Where they superficially disagree is in the fine print of how autistic differences must be removed from society, and, more detectably, in who should pay for this. The intensity of the resulting altercations confirms the common observation that the most academic differences are most obstinately defended. In areas crucial to autistics, the opposing factions have shaken hands in common cause. They would prefer a world without autistic differences, and they do not want autistics standing in the way of this goal. Auton has been and continues to be the most important and representative of the profusion of ABA-parent-versus-government legal disputes. The behaviour, or misbehaviour, of the two factions in Auton, and of the phalanxes of supporters amassed behind each, has generated in Canada a climate in which autism, like cancer, is agreed to be the enemy of the public good. Hostility and ridicule pelt down on anyone begging to differ. This climate experienced a hiatus when Auton traveled to the Supreme Court of Canada (SCC). Autistics, the untreated wasted autistics said by both sides to have no place in society, or in these proceedings, briefly were welcomed, were respected, and were considered. We had rights, we stood equal. In a situation where it seemed we could only lose, we won. Briefly, the sun broke through and we and our allies celebrated, unnoticed. The non-autistic
factions and their phalanxes produced copious public
post-Auton analyses about how the SCC decision
impinges on their extremely important agendas.
Auton was by and for non-autistics throughout,
and this has never been more obvious than in the
immediate and eventual reactions to the SCC decision.
There was the uninterrupted clamour of non-autistics
with axes to grind. There was the scramble by the
factions and phalanxes to claim the high ground for
the next battle over our future. And those pretending
to advocate for the rights of autistics were beside
themselves with fury because these rights did, at the
SCC, unexpectedly emerge. |
A. THE STARTLE
RESPONSE
2. O. Ivar Lovaas is the psychologist who pioneered the treatment demanded by the ABA parents in Auton. In a letter he wrote in 1989, he illustrates how the interests and indeed the humanity of autistics are discarded in high-profile quarrels among non-autistics about what is best for us. A scientific rival had berated Dr Lovaas for one of his electric shock experiments. In response, Dr Lovaas expressed how hurtful these attacks on his reputation were. If he could change history, he wrote, he would not have used electric shock in this experiment in order to induce fear and pain in his autistic study subjects. 3. Instead, he would have used the then-popular holding therapy, which, he noted, was known to produce considerable distress. Autistics have identified holding therapy as abuse. The narrow range of treatment offered by Dr Lovaas in his rejoinder, and his overwhelming concern for his own well-being, presage the relationship between autistic people and those claiming to have our best interests at heart in Auton. 4. The Auton ABA parent petitioners demanded ABA (Applied Behaviour Analysis)-based early Intensive Behaviour Intervention (IBI)—which they also called Lovaas Autism Treatment, or Lovaas—as "medically necessary" treatment for all autistic Canadians. The original demands had been for preschool-aged children, but as Auton progressed, the age limit increased such that eventually there seemed no age at which the petitioners would stop considering ABA/IBI medically necessary for any autistic who had not, to their satisfaction, recovered. 5. The premise of Auton, promoted by both factions and accepted by the lower courts, is consistent with the premise of the treatment demanded by the ABA parents. In Auton, as in ABA/IBI, autistics are seen as entities lacking the essential qualities universally held to define humanity. We have no worth, dignity, integrity, abilities, possibilities, and future. We are unable to learn and we contribute nothing. We are by definition inhuman and doomed. We do not belong in society, but in institutions. We must pervasively improve before we can be ushered into the fully human status, the human rights, and the human dignity which are considered to be inherent to all non-autistics. 6. There is a long documented history of humans denying other humans humanity and personhood. We would only unreasonably expect that this kind of aberration would be confined to centuries past. Where we have progressed is in banishing these aberrations to the fringes of society, such that their overt emergence in any but the most marginal contexts is startling and produces immediate, reflexive protests. When humans are dehumanized, there are individual, organizational and societal startle responses. Choruses of outrage instantly follow. 9. In his recent book, Dr Lovaas describes a "pilot study" at the UCLA Autism Clinic. The experimenters fired a starter’s pistol without warning two feet behind the back of each autistic child in this study. In spite of these children being wired with sophisticated recording equipment, no response to the gunshots could be measured. 10. As often happens in autism research, this experiment sheds less light on autistics than on those pulling the trigger. But with the roles reassigned, the absence of a startle response speaks to the situation of autistics in Canada throughout the history of Auton, and in the wake of Auton’s ultimate decision. 11. The arguments put forward by both sides in Auton depended on the dehumanization of autistics and would have collapsed without this dehumanization. I set out to intervene in Auton because individuals and organizations in positions of power and influence failed reflexively to protest. There was no outrage. Instead of being startled, individuals and organizations either unholstered pistols of their own, or provided the ammunition of encouragement, or passively became inured. All were so entirely absorbed in pursuing their own interests that nothing in the gunfire struck them as amiss. 12. The
dehumanization of autistics failed to be startling or
outrageous. Then it garnered praise, sympathy,
approval by the lower courts, and medals. And the
adversarial judicial system failed to produce any
dissenting view. I decided to go to the Highest Court
of the Land. |
B. THE INTOLERABLE
PRECEDENT
"I believe in the judicial system and I cannot, in my wildest dreams, imagine that the Supreme Court of Canada could forsake these children." —Sabrina Freeman, Vancouver Sun, Nov 18, 2004 "I’m confident that the Supreme Court of Canada is going to protect the most vulnerable group of Canadians."—Jean Lewis, Director, FEAT BC, ABA parent, Vancouver Sun, Nov 18, 2004 14. In their previous legal battles, the ABA parents had easily prevailed. Their loss at the SCC was described as stunning, but the comprehensiveness of their failure was even more so. This was a total defeat without mitigation and the ensuing uproar shows no signs of subsiding. 15. While the SCC decision looks minimal at first glance, it is more than was strictly necessary to decide the case. The Court established that the Auton parent petitioners—Sabrina Freeman and three other ABA parents—were claiming discrimination under no existing law. The petitioners presupposed that all Canadians have a right to public funding for all "medically necessary" services. No such right or accompanying benefit exists under the law for anyone. This took care of the Canadian Charter of Rights and Freedoms section 15 equality arguments at the first step of analysis. 16. A case involving an equality claim for a benefit not provided under the law had not previously come before this Court. We now know that engaging section 15 to cry discrimination when the benefit involved does not exist is likely to fail. Why this strategy didn’t fail in the lower courts is a question that was overlooked in the post-Auton ruckus. 17. In spite of the simplicity of this equality analysis, the uniqueness of Auton compelled the Court to elaborate on their decision. They asked, what if the benefit claimed were provided under the law? 18. In a second and legally superfluous step of equality analysis, the SCC looked for evidence that precisely equivalent groups were provided with benefits that were specifically denied to autistics. No such evidence exists on the record because none was provided by the petitioners. In step two, the Court therefore found no discrimination, in the hypothetical case of the Auton parents not failing at step one. 19. The Court went on to dismiss the petitioners’ Charter section 7 arguments. The claim was that failing to fund Lovaas Autism Treatment deprived autistics of life, health, liberty, and security. The petitioners failed to provide the necessary legal foundation for arguments which the SCC described as "fleeting". 20. The British Columbia government’s appeal was upheld by the SCC, with the effect of overturning the lower court decisions in Auton. These decisions were certainly the "bad law" that the ABA parents deliberately sought by making themselves into the hardest of "hard cases", the most pitiful of innocent victims, the most worthy of causes. So long as these decisions stood, the inhumanity of autistics, as agreed upon by both parties, was enshrined in Canadian jurisprudence. A comprehensive disrespect for science, ethics, and Canadian values as represented by the Charter, also agreed upon by both parties, also was enshrined. 21. Disabled people do not only need equal benefit of the law. We require its equal protection, including from those intent on agendas involving our remediation, rectification, or eradication. While the overturning of the lower court decisions in Auton does not guarantee autistics will experience equality in Canadian society, it has removed otherwise insurmountable obstacles to us working towards, and eventually achieving, this goal. 22. The parent petitioners’ cross appeal, an attempt to improve on their lower court victories, was also dismissed by the SCC. After the decision, governments issued smug statements that they could now dictate program priorities unhampered by the judiciary. In reality, the SCC, while failing to censure the BC government for behaving as reprehensibly as their opponents, made no such concession. Governments remain responsible for writing and administering laws which neither intentionally nor unintentionally are discriminatory, in their effect on groups enumerated in the Charter. 23. From the outset, Auton was a dispute between factions of non-autistics united and indistinguishable in their antipathy and disrespect for autistics. In the history of Auton, and in the history of all similar legal battles, the SCC decision is unprecedented. The SCC restored some rudimentary form of citizenship for autistics in Canada. The procedures and processes designed to protect all other Canadians suddenly protected autistics, and that had never happened before. At the same time, the ABA parents who throughout Auton had hovered above the law suddenly fell under it. 24. Canadian
society, under the unopposed leadership of the ABA
parents, had been educated to find these developments
intolerable, and responded accordingly. |
C. THE AUTISM
HORROR SHOW
"‘It means we've lost another generation of children to autism,’ [Sabrina] Freeman said. ‘And they're going to be institutionalized as adults. That's what it means.’ […] Freeman … said the decision will directly result in B.C. children going into foster care ‘probably in the next six months because the parents are not going to be able to live with a child not in a treatment program.’"—Victoria Times-Colonist, Nov 20, 2004 "It’s open season on people with disabilities. A lot of people are really hanging on by a thread. When people get really desperate, they either give up their child to the state, or they murder their child."—Sabrina Freeman, Vancouver Sun, Nov 20, 2004 "It has been suggested that if one were to replace the word ‘autism’ with ‘cancer,’ the gravity of the situation may be made clearer. Cancer, after all, is an entity that most people have been touched by. Autism, on the other hand, is an ‘invisible disability.’ These children are beautiful, they look so ‘normal,’ not ‘sick.’ Yet, cancer is an apt analogy. Cancer is a disease of abnormal cell growth resulting from genetic mutations. […] Cancer that is not eradicated will advance and (in most cases) cause death."—Dr Ursula Lee, physician and ABA parent, Vancouver Sun, Nov 23, 2004 "You have to choose your illnesses carefully. My son would be better off having leukemia because then he would have treatment immediately."—Andrew Kavchak, ABA parent, Reuters, Nov 19, 2004 "No one understands the horror we are going through."—Andrew Kavchak, Ottawa Sun, November 24, 2004 "Most of the families that I know in this province are suffering beyond what you can even conceive. They are selling their homes, if they have them to sell. I will speak of my own self. I have nothing. I will remain in poverty for the rest of my life. My grandfather developed this province's health care system and my son is outside of that. I will never own a home, a decent car. I may never even be able to hold down a decent job because of my son's disability. He is improving, but I have given up everything to save my son's life, and you know what? I would do it all again. I have given up my health, my husband and at times, my country. I had to leave Canada to seek treatment when they would not provide it here, and families are suffering. Parents think about killing themselves and their children in this country. It is horrible."—Norrah Whitney, ABA parent, executive director of FEAT Ontario, testimony to the Standing Senate Committee on Social Affairs, Science, and Technology, February 15, 2005 "About one in every 195 children are now being diagnosed within the autism spectrum. Or put another way, ‘today it is our children, tomorrow it can be yours or your grandchildren.’"—Robert J. Shalka and Elena Gudyrenko, ABA parents, Hill Times, March 28, 2005 26. In the lower courts, the Auton parent petitioners successfully painted their children as horrors and themselves as martyrs. The SCC noted this forceful strategy while failing to be swayed by it. This failure provoked an outpouring of public sympathy, making it unlikely the ABA parents would contemplate alternative strategies. 27. Certainly they accused the SCC Justices of being as shameful as their decision. Government officials were described in similar terms. The ABA parents have demanded an inquiry into the "total unadulterated garbage" and "shocking errors" of the SCC decision and into the officers of government and law who conspired to produce it. 28. However, no ABA parent accused these officers of being so inherently defective they do not belong in families or in society. These officers were not en masse relegated to foster homes, then institutions. They were not described as "a suck on the tax system", as Dr Freeman said of autistics. 29. Nor were these officers characterized as having a cancerous nature. Also, they were not said to be better off if they had cancer. The ABA parents did not threaten that, because they did not get their way, these officers may be killed. Instead, they threatened these officers, and the greater public, with the possibility that they, too, may have autistic children or grandchildren. 30. Autistic children hear and read. They may reasonably fear they will shortly be removed to foster homes or institutions when this inevitability is widely disseminated and ubiquitously reported in the media. Some autistics will have read that some parents, perhaps their parents, were desperate and may kill them. Many more would have read or heard that they have something exactly like cancer, and have only one hope for getting rid of this and surviving. 31. ABA parents and their supporters filled the media with stories of autistic children now deprived of life-saving treatment, tragically lost, drifting away, doomed to marginalization. This also will have been heard and read by autistic children. In comparison with what they did to autistics after the SCC decision, the ABA parent faction treated the Court and the governments with respect, if not kindly. 32. The strategy of the ABA parents was flattered by imitation, if not actual competition for the most horrific scenarios. The intervener group LEAF/DAWN, whose Auton written and oral arguments had redeeming qualities, responded to the SCC decision with promises that autistics would now not only be institutionalized, which perhaps was not sensationalist enough, but would be sexually assaulted. 33. Influential editorial boards managed both to congratulate the SCC on its decision, and to enter the horrifying-scenario stakes. While the Court was correct, they maintained, provincial governments absolutely must fund Lovaas (the "key" to the "prison" of autism) for all autistics. Nothing else can impede us from rolling downhill into the awaiting institutions, where we will accumulate and destroy the economy. 34. The competition for the most horrifying portrayal of autistics, and the most poignant description of the destroyed and horrific lives of our parents, quickly invaded the federal political arena, where it continues to flourish in the House of Commons and the Senate. Rules of procedure, and of basic human decency, have flown out the august windows of Parliament, and the ABA parents have triumphantly reported every grotesquely false portrayal, every sensationalist denigration of the autistics for whom they claim to advocate. 35. The horrific scenarios were never examined critically, by the media, by disability or other organizations, or by Canada’s political leaders. Martyrs with horribly sick children get a lot of leeway, not just in breaking rules, but in immunity from scrutiny. They are assumed to be right. For example, all media outlets uncritically reported that 90%, if not all, ABA/IBI-deprived autistics end up in institutions. 36. Tristram Smith, the behaviour analyst and colleague of Dr Lovaas, was an expert witness for the parents in Auton. In a letter published in 1988, Dr Smith wrote that the approximate 1960s era rate of institutionalization for autistics was 40% while the rate as of 1980 was 8%. A similar assertion was made by Drs Lovaas and Smith the same year in a book chapter. In 1996, Dr Smith wrote that these approximate rates, for the 1960s, then as of 1980, were 39%-74% and 7%, respectively. 37. A study done in Canada, led by Peter Szatmari and published in 1989, followed up diagnosed autistics with an IQ over 65 (Dr Lovaas' "best outcomes" had an average IQ of just under 70 at intake), born before 1970. Of the 16 autistics followed-up (ages 17-34; IQ 68-110), seven had university degrees (one was an MBA), and one was a community college graduate. This represents a higher percentage of university graduation than in the typical population. 38. Half of Dr Szatmari’s autistics were completely independent; six required minimal assistance (I would fall into this category); one required "moderate" supervision; only one, the youngest, required "constant" supervision. Most were working or were students. One was married. None was institutionalized. All were deprived of Lovaas Autism Treatment, a treatment which was not yet marketed when these autistics were children. 39. This study, like Dr Smith’s statistics, pertains to the specific diagnosis of autism, versus the autistic spectrum at issue in Auton and in the horrific scenarios. All of those with an Asperger's diagnosis, as well as 93% of those with a PDD-NOS diagnosis, will have a measured IQ over 70. The majority with the specific diagnosis of autism now also have an IQ over 70. For example, in an epidemiological study of autism published in 2000, the most recent cohort, born in the early 1990s, shows that 75% of those within the specific diagnosis of autism have a measured IQ of more than 70. 40. It could be argued that perhaps Canada is an anomaly, with particularly institution-prone autistics, and that there have been catastrophic changes since Dr Szatmari’s study. What if the horrific scenarios were true? Christopher Hinkson, counsel for the Auton parents, as well as the parent-supporting intervener groups in Auton, issued the figure of $500,000/year for every institutionalized autistic. Other figures were reported, the lowest of which was $100,000/year. 41. As of 2004, Canada has about 48,000 autistic children (ages 0-19). There are 144,000 adults, with only an insignificant few having had ABA/IBI as children. According to the horrific scenarios, at least 128,000 of us must be uncontrollable, unsalvageable, and therefore institutionalized. This does not count older ABA/IBI-deprived autistic children, who may similarly be written off. Autistic adults in institutions must be costing Canada from $12.8 billion to $64 billion a year. Ontario must have about 50,000 institutionalized adult autistics, costing from $5 billion to $25 billion a year. 42. The Ontario Ministry of Community and Social Services provides for these adults. For the fiscal year ending in 2004, the total operating expenses for this Ministry, which among its many other mandates also runs Ontario’s welfare system, amounted to $6 billion. 43. In reality, claiming that 90% of autistic adults who remain autistic belong in institutions is at the same level of accuracy and ethics as claiming that 90% of aboriginal adults who remain aboriginal belong in prison. A small percentage of autistic adults are likely in institutions, and this percentage exceeds that of the typical adult population. A small percentage of aboriginal adults are in prison, and this percentage exceeds that of the non-aboriginal adult population. However, "autism" does not cause autistics to end up in institutions, any more than "aboriginality" causes aboriginal people to end up in jail. Advocates in other areas understand the role of history, intolerance, and ostracism, as well as mistreatment and abuse, in the outcomes of people with differences. In contrast, "autism advocates" insist that we inherently belong in institutions and can escape them only by sufficiently becoming non-autistic. 44. There is evidence that institutionalization, along with the unethical use of medications and physical restraints, is a cause of inevitably poor outcomes in autism, instead of institutionalization being the result of the inevitably poor outcomes promised in the horrific scenarios. The forceful promotion of these scenarios contributes to a society in which it becomes inevitable that more autistics will be institutionalized, and will therefore have poor outcomes. 45. The refugee horrific scenario is premised on the US being a paradise for autistics and for all disabled people. A recent meta-study of 68 US ABA/IBI legal cases under the IDEA law shows American ABA parents losing half these cases (both for kind of treatment, and for implementation of treatment), a far worse record than the Canadian ABA parents’. Major US media stories headline, or mention in passing, the struggles of American families to obtain ABA/IBI services and have them paid for. The New Yorker ran a lengthy feature about one such struggle. In an article devoted to American ABA/IBI battles in both the private medical insurance and the public education systems, the New York Times reported that one state’s education department provides ABA/IBI for 900 autistic children, but not for more than 3,000 others. 46. In its recent autism series, NBC reported, about US parents fighting for ABA/IBI, that "because of a lack of scientific evidence supporting certain therapies, parents often find themselves battling health insurers for coverage or suing school systems to provide home-based instruction." An American autism professional states, about the legal situation in the US, "Some parents hire a lawyer before they meet the preschool teacher." There are stories of millions spent in disputes over ABA/IBI, and US-based websites indistinguishable in their laments from those of Canadian FEAT groups. An American parent of an autistic child wrote in a letter to Newsweek, "Where is the outrage from taxpayers who will eventually foot the bill to care for these individuals when the families can no longer do so? My son's future would be much brighter if he had AIDS." 47. Universally feared fatal diseases lend poignancy to the horrific scenarios, whether they are deployed in court, in the media, or in political arenas. Auton, pre- and post-SCC decision, has resulted in widespread public acceptance that autism is worthless and dreadful, as cancer and AIDS certainly are. The message—from editorial boards, judges, autism societies, political parties, etc—is that getting rid of every bit of autism in a person, and in society, would be a very good thing, a great improvement. It is the prevention or remediation of an unwanted burden on society and represents a loss of exactly nothing. 48. Several weeks before the SCC decision was handed down, the Globe and Mail published an article about a group of people with significant inherent differences resulting in their existence being dreaded. These people are viewed as "economic and social burdens". However, their existence can be prevented or curtailed in many ways, and efforts in these areas have been successful enough that their high prevalence versus the typical population has significantly diminished. The unacceptable burden on many families was alleviated or eliminated. This sounds like successful control of a serious congenital disorder, but it is not. In this case, the significant inherent differences result from femaleness. These "economic and social burdens" are females, in current day urban India. 49. When "advocates" work tirelessly to ensure an identifiable group of people is rendered worthless via their comprehensive denigration as burdens on society, these advocates are creating a society in which people in this group will suffer and do badly, even if they are competent, or brilliant, or Albert Einstein. 50. Unlike all other
groups, autistics are considered impervious to
discrimination, intolerance and hatred, even when
these are officially funded as public policy and
practiced by those, like the ABA parent faction and
phalanx, claiming to advocate for us. What would
obviously hurt other identifiable groups does not hurt
us because we are unhurtable. We cannot protest
against the horrific scenarios and their false
foundations because the first steps on the road to Auton
were to dehumanize us, to pathologize our experiences
and abilities, to erase our emotions and our voices,
and to deny our dignity, integrity, and existence as
autistics. |
D. THE PERFECTLY
FLAWED DECISION
"Ms Dawson rejects the accounts of the facts provided by both the Respondents and the Appellants."—Factum of the intervener, Michelle Dawson 52. False and pejorative views of autism were presented by both parties. These views played essential and prominent roles in their respective and largely indistinguishable positions. This went unchallenged by all the government interveners, and by all the organization-based non-government interveners who, while claiming to represent the best interests of autistics and/or all disabled people, were complicit in perpetuating gross stereotypes of autistics as "fact". 53. I found it impossible to imagine any decision deriving from the history of Auton, up to and including the SCC hearing, that would not result in permanent harm to autistics in Canada and elsewhere. Nor could I imagine that an autistic voice, speaking against the will of both parties, would be heard. 54. The Court subverted my expectations. Their decision is flawed, fair, and just; it both mirrors and reverses Auton’s history. Most importantly, this history now includes two overturned lower court decisions in which neither science nor law nor autistics were respected. 55. Errors in fact loom large in this history, and their long shadows are part of the SCC decision. They are historical artifacts of the way Auton was argued. The adversarial system failed in Auton, and this resulted in an absence of respect for the existing science and for principles of science and ethics. The false information presented strategically by both parties in order to denigrate autistics appears in the SCC decision, but in a context which highlights the problem of gross errors in fact. Putting Ivar Lovaas in Texas is as anti-factual as putting 90% of autistics in group homes or institutions. The SCC runs these "facts" one after the other. They are equally wrong, and reflect the inaccuracies and biases in the "facts" about autism and its treatment in Auton, going back to day one. 56. The SCC decision importantly mistakes one of the parents’ main witnesses for a government witness. This too is a perfect mirror of Auton’s history. The ostensibly-at-loggerheads parties tweedledummed and tweedledeed their way through the proceedings. The trial judge quoted the testimony of the government’s star witness as definitive evidence in support of the parents. Excerpts of the cross-examination of a government witness show identical ignorance of the science and equal disrespect for autistics on both sides. My intervention stressed the wide areas of agreement between the parties, all having to do with the nature, worth, treatment, and rights of autistics. 57. I also urged the Court to exercise caution in deciding the larger constitutional issues for which Auton was a magnet. This caution permeates the SCC’s decision. The Court stayed within the realm of their own expertise, which is not medicine or autism, but the law. For example, there was no attempt to determine what is or is not "medically necessary" for autistics; the SCC decision is indifferent to this question. The parents’ section 7 arguments, which were sensationalist and offensive when they weren’t merely ignorant, were summarily dismissed. 58. The SCC decision is also indifferent to cost issues. Auton was awash with dire threats of what would happen both if ABA/IBI were funded and if it weren’t. After the decision, the ABA parent faction and phalanx, including in this instance LEAF/DAWN, were scathing in attacking the Court for having been scared off by the government side about the ruinous costs of a decision in the parents’ favour. 59. These were the same parents and supporters who throughout Auton brandished cost-benefit analyses "proving" autistics are so inherently worthless that without ABA/IBI, we will collapse the economy. The SCC decision is free of any such dramatic and prejudicial threats. 60. The Court took no consideration of the many parent-side interveners who claimed to be authorities about what autistics need. The Court mentioned no interventions at all except mine. Autism Society Canada (ASC) claimed to represent all autistic Canadians, yet their intervention, a paean to cost benefit analyses, was ignored. The SCC’s wholesale dismissal of autism and disability organization interveners is a fair rejoinder to the expedient non-representation and misrepresentation of autistics by these organizations. 61. The SCC called ABA/IBI "emergent" and "novel". In part, this referred to the very recent and limited funding of ABA/IBI in some jurisdictions, along with no funding at all in others. However, a glance through the index of the Appellant’s Record shows that of the 5,000 pages of evidence in Auton, less than 30 are devoted to published studies of ABA/IBI. 62. This represents three articles describing two studies. One is Dr Lovaas’ 1987 study, with its 1993 follow-up. The parents were firm in declaring they did not want the treatment described in this study. They did not want contingent aversives, which Dr Lovaas, in his study design, proved not only essential in producing stable behaviour change, but essential in achieving the "mainstreaming" of autistics as promised by the parents. 63. The other study is retrospective. Records were analyzed for study subjects whose results were already known. In this second study, led by Dr Smith and published in 1997, gains were minimal and highly variable, including significant losses, in the treatment group. The average IQ gain in the treatment group was eight points, almost half of which resulted from gains in one of the eleven experimental subjects. There were no reports of "recovery", and many measures were based on subjective observations. 64. If ABA/IBI were not "emergent" or "novel", surely the parents could have supplied more than two published studies of this treatment, neither of which supports the claims they were making. 65. In comparison, the record in Auton contains an overwhelming amount of evidence from both sides devoted to secondary sources, personal anecdotes, and hired opinions recruited according to the agendas of non-autistic factions who had nothing good to say about autistics. It is possible the SCC noticed this and other discrepancies. But contrary to the post-Auton outcry, the words "emergent" and "novel" were not central to the SCC’s decision. These words appear only in the superfluous second step of the Court’s equality analysis. The crucial first step was not based on any aspect of ABA/IBI except that it is not provided by physicians. 66. The ABA parents have successfully educated the public that ABA/IBI is "medically necessary" treatment for the quasi-fatal disease of autism, to the point where many assume that medical experts pioneered and are responsible for providing this treatment. For example, an outraged letter-writer predicted in the Globe and Mail that not only would ABA parents flee the country because of the SCC decision, so would "the medical experts we parents rely on to create these vital programs for our children". The SCC did not make this kind of comprehensive error. 67. The Court’s more
fundamental acknowledgment that ABA/IBI is
controversial as to its history, nature, claims, and
goals serves to protect autistics and all disabled or
disadvantaged people. We are always at risk of having
non-disabled or non-disadvantaged groups deem us
defective and burdensome to society. We are then at
risk for being subject, without consent, to arbitrary
measures designed to alleviate or eliminate the
differences which the majority have decided are
worthless and intolerable. We are protected when
caution is shown in examining promises that unwanted
differences, and unwanted people, can be altered,
restricted, or eliminated to the great benefit of
society as a whole. |
E. THE BLANK SLATE
"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."—Ivar Lovaas, 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."—Ivar Lovaas, 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."—Ivar Lovaas, 1993 "[T]hey need to be taught virtually everything, and the teaching needs to proceed in minute increments instead of major steps. Thus, at the beginning of treatment, the individuals may be regarded as being close to a tabula rasa. In this sense, they can be considered very young or recently born, as persons with little or no experience."—Ivar Lovaas, 2002 69. Autistic characteristics were described as atavistic, pathological, bizarre, impoverished, and primitive. Autistics were said to be "a sad and baffling lot", "untouchable—even more so than the lepers of old"; they cause "confusion, agony, and despair". Then we were firmly classified as less-than-human blank slates. The portrayal of autistics as inhuman, and as inherently failing to meet the requirements for personhood, has continued to the present and was ubiquitous in Auton and Auton’s aftermath. 70. Under the influence of Auton’s history, Allan C. Hutchinson, associate dean at York University's Osgoode Hall Law School, wrote a representative version of autistic inhumanity or non-personhood. In a prominent Globe and Mail op-ed piece, he despairs because the SCC decision denies constitutional status to autistics in Canada. That is, he believes that unless we undergo fully-funded ABA/IBI, we are not human at all. We are the zeros described by Dr Lovaas. Our humanity and our personhood have to be built from scratch, because we don’t inherently have any. Mr Hutchinson accepts that there are humans who are not born but must be built, and only by being built can these entities attain humanity and therefore constitutional status. 71. Mr Hutchinson has a great deal of company, as witnessed by the post-Auton clamour generated by those calling themselves equality rights or autism advocates. As noted above, the SCC decision was widely declared to be the end of equality, Canada, justice, the Charter, etc, as we know them—all because autistics would not as a matter of course have our transformation from inhuman to human via Lovaas fully funded as "medically necessary" treatment. This widespread alarm takes as a starting point that anything is better than being autistic, and that there is literally nothing to lose if autistics are medically mandated to dedicate our lives to achieving non-autistic status. 72. This view of autistics is most strikingly manifested in ABA/IBI not in the behaviour analysts’ catalogue of apparent autistic weaknesses, but in how ABA/IBI practitioners deal with evident autistic strengths. In 1985, a published study co-authored by Dr Lovaas looked at "self-stimulatory" behaviours in six of the experimental group children whose outcomes were later reported in Dr Lovaas’ famous 1987 study. One of these six children, a "best-outcome" or "recovered" child, was a savant. By the time this boy was in kindergarten, he was a calendar calculator. This ability "suddenly emerged". The boy was able rapidly and accurately to extract weekdays for any date in any of the five years since his birth year. He had other extraordinary abilities. A neighbourhood woman called him a "genius". 73. Dr Lovaas classified this boy’s genius as "obsessions", and just more "self-stimulatory" abnormal behaviours. Various methods, including the physical punishment which was essential to Lovaas (1987), had been used consistently over the course of this boy’s treatment in order to eliminate all traces of unwanted autistic behaviours. Successfully extinguishing the unwanted genius behaviour near the end of this boy’s treatment was described as requiring only "minor discouragement from his parents and the project staff". 74. Special, or savant, abilities are strongly associated with both autism and with autistic traits. Peaks of ability, which act as precursors to special or savant abilities, exist in all autistics. They are central to who we are and how we learn. Behaviour analysts have treated these scientific facts as detritus littering the road to normalcy, or as a mirage. The very-respected behaviour analyst Gina Green, while urging her fellow behaviour analysts to renew their "vows to science", also warns us all against being fooled by autistics who "seem to have astonishing special talents", as if our abilities, too, are in the realm of the unethical pseudoscience she rails against. 75. Before and after the SCC decision, "autism advocates" and behaviour analysts have informed the public and the courts that without ABA/IBI, autistics are congenitally unable to learn anything at all. These advocates and experts would have me believe that Dr Lovaas somehow incrementally taught and reinforced the savant abilities of his autistic study subject, in order, one supposes, to have the pleasure of extinguishing them once they "suddenly emerged". 76. Dr Lovaas, in theory and in practice, did deny the possibility of autistics learning outside of ABA/IBI. At the same time, he encountered this non-existent autistic learning so consistently that he found it necessary to name this phenomenon. This was learning by autistics which, he admitted, happened in the absence of either teaching or reinforcement. By Dr Lovaas’ rules, this could not be learning, so he called it "generative self-stimulatory behaviour". 77. Having decided that our learning was not real learning, he went on to claim that it was only through the behavioural suppression of some forms of this "generative self-stimulatory behaviour" that "higher" forms, such as calendar calculation, can emerge. In other words, Dr Lovaas claimed both that his treatment created savants abilities, which could not otherwise be created, and successfully eradicated them. Regardless of convincing, if not spectacular, evidence to the contrary, and like the ABA parents he inspires, Dr Lovaas has never veered from his certainty that without ABA/IBI, autistics cannot learn anything at all. 78. From Kanner’s first 11 case studies onwards, the scientific fact of autistic learning and abilities is well-documented in the science, in both savant and non-savant autistics. Consistent findings in the science both illuminate and refute the prejudices of those many who, in the wake of the SCC decision, described autistic lives as lost, wasted or destroyed. Autism has been characterized as a death sentence, and ABA/IBI as life-saving, as if autistics who remain autistic are not merely lost, wasted, and destroyed, but dead. These assertions are as anti-scientific as they are offensive, irresponsible, and unethical. 79. The existing science is also a forceful denial of the blank slate ideology put forth by Dr Lovaas, promoted in Auton, and defended as gospel by the equality and disability rights advocates who look at us and see nothing at all. 80. Auton’s legacy now includes this wide array of political, academic, and organizational equality and disability rights advocates who accept the premise that autistics are inherently so inferior, so non-equal, that we are not genuinely human. Among them are the pro-parent Auton interveners, that is, all interveners upholding a violation of section 15 rights arising from Auton, and/or upholding the lower court decisions. This is another way of saying all non-government SCC interveners except me. 81. All these Auton-fed
guardians of equality have dehumanized autistics as a
matter of course or convenience. They deny our worth
and abilities. They maintain that only by striving,
via "medically necessary" treatment, to be
non-autistic can autistics become human, and in so
becoming, achieve equality in Canada. They and their
admirers and imitators have failed to notice that autistics
are human, and have interests, and live
consequences. Like Dr Lovaas and his followers, they
have treated us like blank slates, onto which their
own agendas are expediently written. |
F. THE LIFE-SAVING
TREATMENT
"I compare it to a sink full of water. With the onset of autism it's like you just pull the plug on the sink. The longer you let it go, the less you have to work with. […] We have days with Ryan that are hell. But we have a lot of good days -- we've managed to pull him out of the cesspool of autism."—Judy Anderson, ABA parent and lead petitioner in Anderson (an Auton-related case won by the parents), North Shore News, October 27, 1997 "Would you be outraged if there were only one effective treatment to save your sick child's life, and the BC Government refused to cover it under Medicare? Parents of autistic children in this province don't have to imagine it. For us, it's real, it's now, and we are fighting for nothing less than the lives of our children."—Sabrina Freeman, FEAT BC Press Release, March 30, 1998 "I would like to invite you to meet my SON/DAUGHTER; one of the young lives that is being saved by this treatment."—sample letter to MP, ABA petition website "I am absolutely convinced that the only chance children with autism have is sitting before me today. The idea of a child's life wasted, destroyed, merely because of systemic attitudinal discrimination rooted deeply behind government walls and policy is, beyond doubt, a most sobering reality. […] Their treatment can only be paralleled with that of Japanese Canadians during World War II, who were rounded up and placed in internment camps. Institutions, if you want to call them that. If we complacently allow government and society to treat children with autism as second-class citizens, then we massacre the vision of Canada, the legacy left by one of this country's greatest leaders, Pierre ElliottTrudeau. His vision of Canada died the day those tiny disabled feet pattered into the Supreme Court of Canada, only to be impaled by both provincial and federal legal armies determined to defeat their equality rights. Society should be judged by how it treats those who need help, and on this score, sadly, I must say Canada fails miserably. You must in your sober capacity bring in new legislation, so this black mark on the social fabric of this nation never occurs again. You have the power to save these lives."—Norrah Whitney, ABA parent, executive director of FEAT Ontario, testimony to the Standing Senate Committee on Social Affairs, Science, and Technology, February 15, 2005 "Your donation can be the helping hand that helps lead a child out of the darkness of this insidious disorder into the light of the real world."—from the FEAT Alberta website "It doesn't matter if a kid can read and write and do algebra if he can't go out to dinner with his family."—Bridget Taylor, PhD, BCBA, referring to treatment goals for autistic children in ABA/IBI, in the New York Times, October 22, 2004 83. The Quebec and Ontario governments both informed me that not one autistic was consulted in any of their autism treatment decision-making. The same is likely true in all other provinces. Not to be outdone, the federal government proudly and opulently funds what they call an effort to prevent autism. A federal cabinet minister bestows her approval and power on a parent-run and autistic-free American funding body whose goal is to prevent or cure autism. This government has also denied the existence of autistic lives and voices, funded an autism conference from which autistics were banned, and continues to fund Autism Society Canada, a pressure group which calls autistics "very ill" and "afflicted" and has the sole purpose of promoting ABA/IBI. 84. While there are ongoing legal skirmishes over exactly how unlimited provincial ABA/IBI funding should be, the ABA parents, the provincial and federal governments, and even the health technology academics—who, like the parents and governments, have not consulted with autistics—are still, post-SCC-decision, monotonously on the same page re the nature, proper place, and appropriate treatment of autistics. 85. The ABA parent post-SCC-decision all-out assault was not against their ostensible adversaries, but against the rights, dignity, and existence of autistics. They demand that the Canada Health Act be changed to mandate ABA/IBI as medical treatment for all autistics. They will not stop until, via lobbying and petitioning in Ottawa, all autistic Canadians legally become sick, and until becoming normal becomes, for all autistic Canadians, "medically necessary". 86. The ABA parents have impressive political and organizational support, and no genuine opposition, but carefully portray themselves as downtrodden underdogs. They call autistic children a "minority", whose rights they are championing, but they oppose any rights for autistics except for the "right to treatment" to stop being autistic. In no uncertain terms, the ABA parents are against providing autistics with the assistance and materials we need in order to succeed as autistics. Successful autistics are oxymoronic to them, and an anathema. Like "autism", "acceptance" is, to these "autism advocates", a dirty word. 87. At the same time as they cry "minority rights", the ABA parents insist that accepting, understanding, appreciating, and protecting human difference is terribly wrong, and harmful to minorities. Their vision for minorities, including disabled people, is that there must be unlimited funding of medical treatments to remediate and remove human differences. It is essential also for society to be educated by people like themselves to find such differences sick, abhorrent and horrifying. Then minorities can, through unlimited medical treatment, aspire to being normal—like the wanted, welcomed majority—and can dedicate our entire existence to struggling with our entire being towards this one desirable, ideal goal. Then our lives—which otherwise would be forfeit to the soulless, lifeless, hopeless, darkness of the cesspool, or is it the internment camp, of autism, or of whatever human difference is currently being denigrated—will be saved. 88. Pierre Trudeau’s vision for Canada was not that human difference must be eradicated. He did not demand that minority groups undergo medically necessary treatment to resemble or become indistinguishable from the normal majority. He wanted individuals protected from the arbitrary actions of the state. There are few more arbitrary actions than the government-approved forced eradication of human difference via a medical treatment applied intensively to clients unable to consent. 89. Mr Trudeau would
not have been likely to support Dr Lovaas who,
concurrent with the autism treatment reported in his
1987 study, conducted and defended an "effective"
ABA-based early IBI to "save" the lives of boys at
risk for non-heterosexual development, and to prevent
and cure the pathology of homosexuality. In fact, it
was Mr Trudeau who, as justice minister, declared that
the state had no place in the bedrooms of the nation.
He removed homosexuality from the criminal code within
years of Dr Lovaas writing, more than once, that
intolerance against minorities, such as homosexuals,
should be responded to by changing the targets of this
intolerance to conform with the prejudices of the
majority. |
G. THE DISABILITY
COMMUNITY
"The Respondents oppose the applications for leave to appeal by: […] Michelle Dawson because, in our respectful opinion, the issues will be adequately canvassed by the Court by those referred to above, and of course the parties themselves."—Solicitors for the Respondents (the Auton parents), Feb 26, 2004 "I have taken the time to talk to all kinds of officials from the autistic [sic] community and they have actually told me not to respond to you as many of them have restraining orders on you."—Charles Matthews, disability rights activist, Disabled and Proud (Ottawa), letter to Michelle Dawson, Oct 14, 2004 91. The parents could also have objected in the SCC hearing. Indeed, they set aside part of their allotted time in order to respond to my lawyer’s arguments. Their lawyer, Christopher Hinkson, made no mention at all that I was a fraud and had lied under oath, and that there was "professional opinion" that I am not autistic. 92. Further, the Auton parents have had free run of the media. Anyone in the ABA parent faction and phalanx, or any of their lawyers, could have at any time used this privilege to reveal to the public that one of the SCC interveners was a fraud, had lied under oath, and that there was "professional opinion" that she was not autistic. 93. The accusation that autistics who disagree with ABA parents, in Canada and elsewhere, are not really autistic, and do not understand "real" autism, is so commonplace and banal that the absence of this accusation from the post-SCC-decision outcry would have been shocking. As yet there is not one instance of autistics who agree with the ABA parents being so accused. 94. Auton at the SCC was well populated by interveners claiming to represent autistics. ASC, for example, claimed to represent all autistic Canadians. I made no such claim in my application or written argument. Nor did my lawyer in his oral argument. Dr Freeman’s inability to distinguish between ASC and me does not argue for the reliability of her observations. 95. ABA parents have railed impressively against positions that I have never taken, against statements I have never made, and against actions I have never taken. This has also happened to many other autistic activists who do not agree with the ABA parents. We are still waiting to be genuinely challenged. Instead we have been defamed and disrespected in ways which are no more productive to argue against than any other form of bigotry. 96. Charles Matthews runs an Ottawa group called "Disabled and Proud" (not to be confused with an American organization of the same name) and is a self-designated leader of the disability community in Canada. He is not autistic. His response to my own brief inquiry about his support for the ABA parents shows that being a fraud is not all I have been accused of by the "autism community", none of whom has restraining orders against me, or any cause to have. Mr Matthews did not respond to a letter from my lawyer. 97. Attempting to silence an autistic by accusing her of having restraining orders against her is like trying to silence a gay man by accusing him of being a pedophile: it deliberately exploits harmful prejudicial stereotypes. This is how the autism and disability communities encounter autistics who present science-, ethics- and human rights-based challenges to legal and political actions whose consequences we cannot escape. 98. In fact, any person who in any way opposes the ABA parents, or publicly says or writes anything good about autistics (unless this autistic is in an ABA/IBI program) in Canada, can expect to get abusive and/or hate mail. Non-autistics who have taken reasoned, fact-based positions not entirely supportive of the ABA parents have found themselves opening mail, in some cases a lot of mail, containing the news that they are corrupt or have been paid off, as well as more personal insults and/or accusations that they are destroying children. 99. The Canadian disability community has largely supported the mission and methods of the ABA parents and bestowed on them tremendous sympathy as well as heroic martyr status. I’m aware of one dissenting group which, because of how the ABA parents respond to dissent, I’m not prepared to name. And I know a few dissenting individuals, prominent in the disability community, who have not spoken out in public. Should they ever, they will enjoy a barrage of insulting and threatening mail, and/or public ridicule and vilification, all from the same ABA parent faction and phalanx insisting that unless autistic children acquire proper "social skills" via "medically necessary" treatment, they are doomed. 100. In theory, the mission and methods of the disability community should be at odds with the ABA parents. The ABA parents pathologize, demonize and dehumanize disabled people. They insist that the only way a disabled person can stay out of institutions is to become non-disabled. They market disabled people as an appalling burden on non-disabled people, and state as scientific fact that the only way to alleviate this burden, which threatens to destroy the economy, is to make disabled people non-disabled via extensive, if not perpetual, medical treatment. In court, the ABA parents characterize disabled people as "less than half living". Everywhere in their work is the message that disabled lives are not worth living. Only the non-disabled have real lives and contribute to society. If a disabled person makes any progress, or has any abilities at all, this is always and only due to their "medically necessary" treatment. Further, "progress" in a disabled person always and only means "progress towards being normal". And if a disabled person has achievements that cannot be attributed to a "medically necessary" treatment, then this person must not really be disabled, because, as everyone knows, untreated disabled people just get "worse and worse" and are not good for anything. The ABA parents denounce as ridiculous the possibility of disabled people having a say in their treatment, because disabled people are inherently unqualified to make decisions about themselves. It is ludicrous, according to the ABA parents, that anyone would consider being disabled a valid way to live; and it is criminal to provide the kind of assistance which allows disabled people to succeed as disabled people. For the ABA parents, there is no such thing as a successful disabled person. 101. The disability
community, which has extensively invested itself in Auton,
has lost its bearings in autism issues. They fail to
see us as human. They are condoning and encouraging
views of disabled people utterly poisonous to
themselves, because they believe these poisonous views
are simply true when applied to autistics. No leader
in the disability community, or any kind of leader,
would dare make or act on the above statements about
disabled people except after first
substituting "autistic" for "disabled". |
H. "THIS TERRIBLE
AND LIFE-DESTROYING CONDITION"
Ms. Whitney:
I will tell you something. I believe that
discrimination and hate are learned behaviours.
"The Charter does not exist to promote these stereotypes and prejudices by allowing equality, dignity, and participation only to those who succeed in a "medically necessary" treatment to eradicate their differences and render them indistinguishable from Canadians judged to be ‘normal’"—Factum of the Intervener, Michelle Dawson, Auton (Guardian ad litem of) v. British Columbia (Attorney General), SCC File No.: 29508 103. Regardless of this failure, the ABA parents have succeeded in changing the lives of all autistics in Canada. The ABA parents have largely succeeded in legally and politically defining a neurological difference, autism, as a treatable cancer-equivalent disease from which otherwise normal or healthy, that is non-autistic, people suffer. "Autistic" has been defined as "sick"; "non-autistic" has been defined as "healthy"; and an "effective" medical treatment is one which restores a sick autistic person to a healthy non-autistic condition. 104. Our rights as autistic people have vanished as surely as the rights of homosexuals would, should homosexuality be defined as a cancer-equivalent treatable disease from which otherwise normal or healthy, that is heterosexual, people suffer. 105. This success on the part of the ABA parents has been insufficient to their needs. They want autism uniquely singled out and identified in federal law as a disease for which unlimited medical treatment, that is ABA/IBI, must be funded. The only acceptable limit to this treatment is that it may stop when the autistic is "recovered" and therefore "indistinguishable" from non-autistics. Either we do not recover, and stay in treatment striving to recover; or we recover, and are no longer autistic. 106. Again, the ABA parents are succeeding. Autism is now singled out at the federal level. Canada now has ABA MPs and ABA Senators. We are, according to the ABA MP Mr Poilievre, our own parents’ worst nightmare. That is, there is nothing worse than having an autistic child. We are uniquely appalling. Our parents uniquely suffer more than any other parents. It is a "moral imperative" to amend federal law to define all autistic Canadians as diseased. 107. The ABA MPs prominently include both Conservatives and New Democrats. Conservatives Scott Reid and Chuck Strahl, and the New Democrat Peter Stoffer have, in the House of Commons, called autism a "terrible disease". At a press conference, Mr Stoffer, who has given his office space to the ABA parents, read a statement from Canada’s interchangeable FEAT groups and autism societies. He characterized autistics as "very ill" and "afflicted", and the Auton SCC decision as a "travesty". 108. It was Mr Reid who called autism "this terrible and life-destroying condition", in the House of Commons, where Canada’s leaders sit. He also said that autism must be treated via "life-changing" ABA/IBI, which only works if it is done early. If parents don’t get ABA/IBI right away, they "lose their child to autism." No one in the House of Commons objected. 109. Any objection would be inconceivable. In Canada, it has become inconceivable, if not preposterous, that autistics have value and dignity as autistic people. Here also, the ABA parents have succeeded. 110. At the highest political level, the ABA parents have succeeded in turning the existence of any child with any autism spectrum diagnosis into the most excruciating and compelling family tragedy. They have cornered the suffering market. No one is permitted to question them. It would be unthinkable. 111. Whatever else its consequences, Auton has been, and post-SCC-decision continues to be, a real-time case study in what happens when a society and its leaders respond to people who are intrinsically and inherently different by judging their differences to be incompatible with humanity and therefore with membership in this society. 112. History sadly
overflows with such case studies, in the areas of
race, ethnicity, gender, orientation, and ability.
This history, including Canadian history, duly records
the atrocities that ensue when extreme prejudices
about human difference become public policy.
Throughout human history, there exists a condition
that is genuinely "terrible and life-destroying". It
is the persistent hatred of human difference and the
great determination to wipe it out. Nothing has caused
more suffering or destroyed more lives. |
I. THE INHERENT
DIGNITY OF OUR PERSONS
114. Auton is not ideal. The SCC decision, ideally, would have censured the BC government which, like the ABA parents, wrote off autistics. While the government’s cursory and dismissive denigration of autistics pales in comparison with the more extravagant and comprehensive denigration by the parents, a government is supposed to have a greater responsibility, and to extend that responsibility to all citizens. 115. Auton is also an anomaly. I predicted, shortly after the SCC decision was handed down, that this decision would not be respected in the lower courts and tribunals. This prediction has so far largely been accurate. Both the ABA parent faction and phalanx and the government side in Auton responded to the SCC decision in ways not encouraging of change, on either side, in how autistics will be portrayed and treated. Indeed, the ABA parents are leveraging the supposed horror of the SCC decision in the same way they leverage the supposed horror of their autistic children. 116. Auton has a very different meaning for autistics and our allies in Canada and elsewhere. 117. We know that the Auton parents, accurately representing all ABA parents and the "autism community", argued at trial that being autistic violates our physical and psychological integrity and the inherent dignity of our persons. But we also know that neither the demeaning views of autism deployed by both sides in Auton, nor the explicit objections of both sides, succeeded in preventing one of the untreated autistics whose humanity and dignity was denied throughout the lower court proceedings from intervening at the SCC. There are rules and standards governing interventions at the SCC, and we now know that these rules and standards mean an untreated autistic who is denied participation elsewhere in Canadian society, and particularly in the "autism community", is welcomed to participate in this one place, in the Supreme Court of Canada. 118. We know that autistics who believe we have integrity and dignity have been ostracized. We have been demeaned, banished, and segregated by the Canadian "autism community"—by those claiming to represent us. Our requests that we be treated as equals have been rejected as outrageous. But in Auton, a case involving crucial decisions about the future of autistics in Canada, the "autism community" was forced to watch while an autistic was treated as fully human, and as an equal. This had not happened to this community before, not when anything important was at stake. 119. I don’t know how much influence I had on the SCC decision. I do know that if I had none at all, I would not have been the only intervener mentioned. "Equality rights advocates" have claimed that the Court tried to "hang" their decision on me, as if I am some kind of victim. I find this offensive. I would not have intervened unless I were willing to take responsibility for influencing the decision. Indeed, this is why I intervened. The intervention was a success. Autistics and our allies in Canada and around the world experienced and expressed intense joy. 120. In a unanimous
decision written by the Chief Justice of the Highest
Court of the Land, the voice of an untreated autistic
was not only welcomed, but heard, and considered, and
noted. Whatever we may have to endure in the wake of
this fair and cautious decision, this singular
unprecedented victory is permanent, and cannot be
erased from us. |
Acknowledgements:
Thanks to Philip Arnold Ashton, Camille Clark, and Kathleen Seidel—autism’s historians. Thanks always to Ralph Smith and jypsy (janet norman-bain), sine qua non. Also thank you, again, with apologies, to Doug Mitchell. Author
affiliation: Notes and
sources: A. For
the factum of the intervener, Michelle Dawson, see http://www.sentex.net/~nexus23/naa_fac.html
C. (General
sources for reactions to the SCC decision, FEAT BC
public chat board http://www.featbc.org/cgi-local/forum/discus.cgi
, where good vs evil is invoked, etc, and http://www.canadaautism.com/)
D.
Freeman from her summary of Auton, posted here http://www.featbc.org/cgi-local/forum/discus.cgi
; factum is here http://www.sentex.net/~nexus23/naa_fac.html
E. Quotes (in
order) are from Chance (1974); Lovaas & Newsom
(1976); Lovaas & Smith (1989), Lovaas (1993); and
Lovaas (2002). F.
G.
Freeman’s summary of Auton is here http://www.featbc.org/cgi-local/forum/discus.cgi
; response from the parents is here http://www.sentex.net/~nexus23/naa_sup.html#2a
H.
I.
Auton (2002-2004), File Number 29508. In the Supreme Court of Canada (On appeal from the British Columbia Court of Appeal) between the Attorney General of British Columbia and the Medical Services Commission of British Columbia, Applicants (Appellants/Respondents on Cross-Appeal) and Connor Auton et al, Respondents (Respondents/Apellants on Cross-Appeal): applications for leave to appeal and cross-appeal, responses, and replies; applications for leave to intervene; factums of the parties and interveners; index of the Appellant’s Record. Chakrabarti, S., and Fombonne, E. (2001). Pervasive developmental disorders in preschool children. Journal of the American Medical Association, 285, 3093-9. 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. Choutka, C.M., Doloughty, P.T. and Zirkel, P.A. (2004). The "discrete trials" of applied behavior analysis for children with autism: Outcome-related factors in the case law. Journal of Special Education 38, 95-104. Dawson, M. (2005). Autism in society, law, and science. CD-rom, CECOM ed, Montréal. Dawson, M. (2004) The misbehaviour of behaviourists. http://www.sentex.net/~nexus23/naa_aba.html Epstein, L.J., Taubman, M.T., and Lovaas, O.I. (1985). Changes in self-stimulatory behaviors with treatment. Journal of Abnormal Child Psychology, 13, 281-294. Freeman, S.K. (2003). Science for sale in the autism wars: Medically necessary autism treatment, the court battle for health insurance and why health technology academics are enemy number one. Lynden, WA: SKF Books. Green, G. (1999). Science and ethics in early intervention for autism. In P.M. Ghezzi, W.L. Williams, and J.E. Carr (Eds.), Autism, Behavior Analytic Perspectives. Reno, NV: Context Press. Heaton, P. and Wallace, G.L. (2004). Annotation: The savant syndrome.Journal of Child Psychology and Psychiatry, 45, 899-911. Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217-250. Kanner, L. (1971). Follow-up study of eleven autistic children originally reported in 1943. Journal of Autism and Childhood Schizophrenia, 1, 119-145. Kanner, L., Rodriguez, A., and Ashenden, B. (1972) How far can autistic children go in matters of social adaptation? Journal of Autism and Childhood Schizophrenia, 2, 9-33. Kielinen, M., Linna S.L., and Moilanen, I. (2000). Autism in Northern Finland. European Child and Adolescent Psychiatry, 9, 162-7. Lovaas, O.I. (1967). A behavior therapy approach to the treatment of childhood schizophrenia. Minnesota Symposia on Child Psychology, 1, 108-159. Lovaas, O.I. (1979). Contrasting illness and behavioral models for the treatment of autistic children: A historical perspective. Journal of Autism and Developmental Disorders, 9, 315-323. Lovaas, O.I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3-9. Lovaas, O.I. (1989). Concerns about misinterpretation and placement of blame. American Psychologist, 44, 1243-1244. 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 . (2002) Teaching Individuals with Developmental Delays: Basic Intervention Techniques. Austin, TX: Pro-Ed. Lovaas, O.I., Schaeffer, B., and Simmons, J. Q. (1965). Building social behavior in autistic children by use of electric shock. Journal of Experimental Research in Personality, 1, 99-109 Lovaas, O.I., Koegel, R., Simmons, J.Q., and Long, J.S. (1973). Some generalization and follow-up measures on autistic children in behavior therapy. Journal of Applied Behavior Analysis, 6, 131-166. Lovaas, O.I., Schreibman, L., and Koegel, R.L. (1974). A behavior modification approach to the treatment of autistic children. Journal of Autism and Childhood Schizophrenia, 4, 111-129. Lovaas, O.I. and 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, I., Newsom, C., and Hickman, C. (1987). Self-stimulatory behavior and perceptual reinforcement. Journal of Applied Behavior Analysis, 20, 45-68. Lovaas, O.I., and Smith, T. (1988). Intensive behavioral treatment for young autistic children. In B.B. Lahey, and A.E. Kazdin (Eds.), Advances in Clinical Child Psychology, 11. New York: Plenum Press. Lovaas, O.I., and 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. Maurice, C. (1993). Let me hear your voice: A family's triumph over autism. New York: Knopf. McEachin, J.J., Smith, T., and Lovaas, O.I. (1993). Long-term outcome for children with autism who received early intensive behavioral treatment. American Journal of Mental Retardation, 97, 359-72. Mottron, L. (2004). L’autisme: une autre intelligence. Belgium: Mardaga. Rekers, G.A., Bentler, P.M., Rosen, A.C., and Lovaas, O.I. (1977). Child gender disturbances: A clinical rationale for intervention. Psychotherapy: Theory, Research and Practice, 14, 2-11. Rekers, G.A., and Lovaas, O.I. (1974). Behavioral treatment of deviant sex-role behaviors in a male child. Journal of Applied Behavior Analysis, 7, 173-90. Rekers, G.A., Lovaas, O.I., and Low, B. (1974). The behavioral treatment of a "transsexual" preadolescent boy. Journal of Abnormal Child Psychology, 2, 99-116. Schopler, E. (1988). Concerns about misinterpretation and uncritical acceptance of exaggerated claims. American Psychologist, 43, 658. Sheehan, S. (2003). The autism fight; diagnosis; treatment; litigation; flight. The New Yorker, Dec. 1. Sinclair, J. (2005). Autism Network International: The development of a community and its culture. http://web.syr.edu./~jisincla/History_of_ANI.html Smith, T. (1988). Concerns about nonspecific factors in the treatment of developmental disabilities. American Psychologist, 43, 657-658. Smith, T. (1996). Are other treatments effective? In C. Maurice (Ed.), G. Green, and S. C. Luce (Co-Eds.), Behavioral intervention for young children with autism. Austin, TX: PRO-ED. Smith, T., Eikeseth, S., Klevstrand, M., and Lovaas, O.I. (1997). Intensive behavioral treatment for preschoolers with severe mental retardation and pervasive developmental disorder. American Journal of Mental Retardation 103, 238-249. Szatmari, P.,
Bartolucci, G., Bremner, R., Bond, S., and Rich, S.
(1989). A follow-up of high-functioning autistic
children. Journal of Autism and Developmental
Disorders, 19, 213-225. |
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