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The Auton Case: Application, Opposition, Order | The Auton Case: The Intervener's Factum
VARIETIES OF BEING WRITTEN OFF
By Michelle Dawson
One of my first practical observations about autism was about how difficult it is for anyone to represent us. I have no idea if this observation is generally true, but it was specifically true at the Auton hearing at the Supreme Court of Canada on June 9, 2004.
Lawyers, and no one else, are allowed to speak in this Court, so my lawyer Doug Mitchell spoke for me. When you are represented by a lawyer, your job as a client is to defer to your lawyer’s expertise. Throughout the process of applying for leave to intervene in Auton, then producing a written argument, my difficulties with deferring were evident and often productive. The end result was a fair representation of my position in this case.
This happy outcome was not repeated at the hearing itself. Here lawyers are segregated from clients, and the requirement for flexibility in simple matters like scheduling, and in sophisticated manoeuvres like improvising in response to previous arguments, meant that I could not do anything but watch in silence from the pews in the back.
Doug had warned me in advance that it was inevitable he would not meet some or even many of my expectations, and he was right to warn me. He has expressed satisfaction with what he said, and his opinion deserves great respect. I’ve expressed to him my difficulties with what he said (for its carelessness) and how he said it (flamboyantly). My frustration with not being able to have the last word is not easy to live with. As well, I feel I have failed. I pin my hopes on either Doug being proved right and shaming my own doubts, or on the Justices giving priority to my written argument (called a factum) which largely consists of my own words.
What follows is what I would have said, had I been allowed to speak to the Court.
"Respondents" are the parents of autistic children
who originated this case, and the "Appellants" are
the British Columbia government departments named in
I respectfully submit that Justice Binnie’s remark about autistic children being written off requires elaboration. Throughout today’s hearing, the Court has been informed of some of the many varieties of being written off which comprise the central experience of being autistic in Canada.
Setting aside the exceptional argument provided by LEAF/DAWN, for which I am inexpressibly grateful, we have witnessed in this hearing the perpetuation of the stereotype which has permeated the proceedings to this point. This is the idea that autism is incompatible with humanity, or with human life. The humanity of autistics who learn and communicate, who move and interact in autistic ways has been written off by both sides and their supporters.
In fact, Counsel for the intervener FEAT of Ontario, speaking in support of the Respondents, claimed that without Lovaas-type early intensive behaviour interventions, autistics will be less than half living. This means that I am, by their standards, mostly dead. Another interpretation of "less than half living" is "less than half human", which might also mean not human at all. Autistic people are given the one stark choice: strive to learn, communicate, interact, move, think, and become like a normal person, or prepare to meet our doom. The possibility that autistic people whose nature is not substantially rectified are "alive" and "human" has been written off.
The same intervener made a point, as have the Respondents, of insisting that autistics can’t learn. We have to "learn to learn". This is ridiculous even at a logical level. A person who can’t learn can’t learn to learn or even learn to learn to learn. What really is meant is that autistics have to learn to learn the way non-autistics do, or else we are doomed. Our own learning is written off.
This construct also assumes that before Dr Lovaas set up shop, no autistic person ever learned anything, myself included, due to us entirely lacking this human capacity. By writing off autistic learning, the Respondents and their supporters write off our basic abilities.
This learning and these abilities are present and measurable in all autistics, regardless of our age and our presumed "level" of functioning. Our learning and abilities are sometimes accepted when they are expressed but are more often rejected, since they don’t look "normal" at all. Nobody has studied the human consequences of rejecting universal autistic abilities, since no one has cared enough about them.
These abilities, which involve basic processes like perception, may, when they are allowed expression, result in extraordinary achievements in learning and innovation, and in beauty and insight. It is necessary to repeat that all autistic people contain these abilities. But in the world which has represented itself in this Court today, these abilities are more likely to be greeted with horror than with awe when they are expressed in an autistic child. The very signs that an autistic child is learning like an autistic are now known, through public education efforts by many of the organizations here today, as symptoms that something is terribly wrong. Now every effort must be taken to fix these appalling and useless aberrations.
So our abilities—and these are at the very center of us, involving how we experience the world and how we learn from it—are written off. Why these abilities are perceived by non-autistics as "wrong" is an interesting problem. But autistic people are not the first human beings with differences to be assumed to be wrong on the basis of intolerance for their essential characteristics.
The more pertinent problem is perhaps that our abilities are now written off because they are known to be "treatable". A family with an autistic child can now hope for the kind of child they really wanted, a non-autistic child. This is the consequence of describing Applied Behaviour Analysis-based early IBI as, first, the "scientifically proven" treatment for autism; then in Canada, expediently to make the case in these and similar proceedings, as the "medically necessary" treatment for autism.
While the Respondents want me to believe that their legal position, if upheld, will have no effect on me, or on any autistics who do not believe we are less than half-living, they are being fundamentally dishonest. I respectfully submit that their position has an effect on every autistic in Canada, and on autistics elsewhere. This has been true from the outset, ever since the Respondents started insisting that autism is a catastrophic disorder or illness. They have pathologized autistic traits and abilities and all who possess these traits and abilities have been pathologized. The differences which are central to our identity and integrity have been equated with cancer and AIDS. Our core medical need has been described as a treatment which will rid us of our cancerous identity and our sick and disordered integrity.
Anyone arguing that the residential school system had no effect except on the aboriginal children who attended and were "treated" would risk being denounced as ignorant. So would anyone arguing that a government-funded "medically necessary" early IBI, as developed by Dr Lovaas, designed to avert the possibility of non-heterosexual development, would have no effect on anyone but those being treated.
I respectfully submit that autistics are seen as so much less than human that whatever is decided in public policy about us is assumed to have no effect on us. Our emotions, our daily lives under this public policy, our engagement and interest in our own fate, all are written off.
The Appellants’ complete disregard for any of these considerations is a measure of the true dimensions of our comprehensive status as write-offs. They never considered, as is their obligation to consider, that autistics are human beings and may want a say in our future.
Also, the Appellants could easily have challenged the Respondents on any of their facts. Instead, they chose to provide inaccurate facts of their own, sometimes drawn from the Respondents’ witnesses. For instance, the Appellants’ assertion that 75% of autistics have below normal measured intelligence is a statistic that is contradicted in the literature, where the figure is at most 25% and has been for some time now. The additional problem of why low measured intelligence is conflated with institutionalization and similar written-off fates in a society with values represented by the Charter was not raised by anyone at all.
In any case, it was not just the facts, but the position of the Respondents, which depends utterly on the premise of autism as catastrophe, which was not challenged in the supposedly adversarial proceedings below. The Appellants were apparently in accord with this premise, described by the trial judge as "beyond dispute". This meant the Appellants did not bother to question the totally inaccurate presentation of the famous one in 64 statistic.
The study responsible for that figure, published by Michael Rutter in 1970 and dating back to patients in the fifties described as "psychotic", is not on the evidentiary record. In spite of this, it has been cited by both the trial and the appeal judges, as well as today by Counsel for the Respondents. All expressed certainty that only one in 64 autistics shows "any improvement" without early IBI treatment.
In reality, this study shows that one in 64 untreated autistics becomes totally normal and shows no trace of autism in either his work or his social life. Many others in this study did very well, completing "O" levels, for example. Eight, at the relatively young age of final follow-up, were working and three others were continuing their education such that their subsequent presence in the workforce was assumed. Among the "non-improved" autistics included a person attending music college. In these proceedings, one of the infant Respondents, Miki Tamir, is described, after more than ten years of Lovaas treatment, as being in a fine arts high school studying music. I respectfully submit that if the reporting of the Rutter study in these proceedings is accepted as accurate, then Ms Tamir, like her Rutter study counterpart in music college, has not shown "any improvement", in her case in spite of more than a decade of Lovaas autism treatment.
Of course, many of Dr Rutter’s study subjects did poorly, but a significant number, almost one third, were untestable at intake and therefore would have been ineligible for Dr Lovaas’ 1987 study. Some would have been eligible for the Smith et al. (1997) study, in which study subjects achieved only minimal improvements in spite of their ABA-based early IBI treatment.
Another flagrant dishonesty has surfaced repeatedly today, and that is the idea that without Lovaas-type early IBI, autistics will deteriorate. We get worse and worse. The spectre of regression, hopelessness, and institutionalization hangs over this room. In fact, moment by moment, I am getting worse and worse before your eyes. Because, everyone here has been informed, this is just what autistics do. We are write-offs, after all.
I respectfully submit that there exists no evidence for this assertion, which is a statement of prejudice. In the 1993 follow-up to Dr Lovaas’ 1987 study, one of the control children was indeed described as faring poorly in an institution. It was revealed in 1998, in the literature, via personal communication from Dr Tristram Smith, a witness for the Respondents, that this child had a proper diagnosis of Rett syndrome. Rett syndrome is not autism, and while it has been placed on the autism spectrum, it is scientifically proven that ABA-based early IBI is totally ineffective in Rett’s. It is also known that deterioration happens in Rett syndrome. Many who provided representations in these proceedings had the knowledge to provide this information, had anyone thought it beneficial to ask.
The existing evidence in published science shows progress through the natural course of development in autism, including cases in which the person could no longer be diagnosed as autistic. These studies have important flaws, but enough such studies exist to raise serious questions. Consider also the problem that order and progress of development are entirely different in autistics as compared to non-autistics, and that the autistic version is assumed to be wrong. Then there is the further complication of the care, and the expectations, deemed appropriate for those who are not developing properly and have a diagnostic label synonymous with doom.
There is also evidence that autistics have great potential for learning and progress throughout our lives.
The Respondents entirely deny this potential unless it involves the acquisition of typical traits in early IBI. They have to write off our possibilities as autistics in order to make autism a catastrophe meriting a substantial re-allocation of public funding. But their position equating autism and catastrophe has a wider purpose. I respectfully submit that this wider purpose is to deflect scrutiny, and in fact to make scrutiny of their actions and motives seem reprehensible.
Once a group of people is assumed to be hopeless and doomed, any improvement, whatever its human or monetary costs, is considered better than the presumed status quo. The untrue characterization of autistic people accepted in these proceedings has historical resonances in Canada. Aboriginal people were also assumed to be hopeless and useless and a great effort was made to improve those who could be improved—the children—before it was too late. We should have learned from the native residential schools that the possible acquisition of skills deemed typical and valuable by the majority does not compensate for the denigration and destruction of the value and contributions of minority groups and their special characteristics.
I respectfully submit that in these proceedings this lesson has been ignored. We haven't learned that we must exercise extreme caution in evaluating and altering people who are significantly different from ourselves.
Serious errors have been made, even with "scientifically proven" or "medically necessary" treatments when they have been applied to persons assumed to be hopeless or less than human, and to groups barred from all decision-making about themselves. We’ve forgotten, for example, that the inventor of the lobotomy won the Nobel prize. There is no reason to believe our society is somehow immune from these kinds of errors.
Both parties in these proceedings characterize untreated autistics as expensive write-offs and both parties have rejected the possibility of autistics participating in decisions about autism. A minimal requirement when we are seeking to get rid of a difference about which we are ignorant is to consult with those who will live all the various consequences of having their differences seen as defective and slated for eradication.
None of these problems has been raised by either party or any of the interveners with the exception of LEAF/DAWN. In fact, it has been suggested in arguments from both sides that the mere existence of autism in a human being is a violation of the section 7 Charter rights of that person. This is just another consequence of autism as catastrophe, a construction that has a long history, a history with which I’ll finish my argument.
Five years before
the start of the Young Autism Project at UCLA, Dr
Lovaas published a study about a successful behaviour
intervention that resulted in observable social
behaviour in autistic children. Here are some
statements made by Dr Lovaas in this study:
I respectfully submit that it is not 1965 any more. And that is the point, isn’t it. That science could be justified by the standards of that time. As a brief aside, in this study Dr Lovaas thanks the late Donald M. Baer for help in the "design and report" of this study. This is the same Dr Baer, a psychologist, who provided the definition of "medically necessary" that was accepted by the trial judge in these proceedings and has been repeated many times today in this hearing.
Returning to Dr
Lovaas’ study, he was, in point four, arguing that
while other methods were available, electric shock was
most efficient or effective or efficacious. Shouldn’t
the meaning and consequences of "effective" and
"efficacious", two words ubiquitous in this hearing,
be questioned? Yet this hasn’t happened. Perhaps this
oversight stems from same reason that Dr Lovaas’ work
with electric shock met little in the way of
objection. Here is point five from his study,
While repeating that when it comes to electric shock in routine early IBI in autism, it is not 1965 any more, in some ways little has changed. So long as the natural home for all autistic people is assumed to be in an institution, anything can be justified as a treatment for us. So long as our future is "certain institutionalization" as less than half-living half-human beings, anything which promises to avert this fate will be pursued with the vehemence displayed by the Respondents in these proceedings.
Autistic people will notice that while this vehemence has in itself become an issue, the possibility that autistics are more than the sub-human write-offs flourished for the convenience of the supposedly polarized parties has not been considered. From an autistic point of view, there exists so far a consensus among the parties and the courts that an accurate and impartial view of autism founded in Canadian values and human rights, in the accounts of autistic people who once were autistic children, and in the existing published science, was just too "time consuming and laborious" to contemplate.
This is a terrible irony. If there is one quality which autistic people most require and most easily achieve, it is accuracy, which for us encompasses impartiality.
I respectfully submit that for these reasons I do not support either side. I reject both their positions. They are the agendas of parties who have written off autistic people and who wish that we didn’t exist. Accepting either position is to accept that autistic Canadians are a catastrophe and do not deserve the Charter rights and freedoms guaranteed for all other Canadians.
Thanks to Camille
and Philip, who surely know who they are, for
reminding me that the past counts. Also thanks to
Morton Ann Gernsbacher for her logic, which I
borrowed. And with infinite thanks to Doug Mitchell,
in the hope that he is right again.
The above article is meant to be spoken out loud and likely exceeds the 15 minutes Doug was allowed in the Court. It is rife with the benefits and pitfalls of hindsight.
LEAF stands for
Women's Legal Education and Action Fund.
Boyd, R.D. (1998). Sex as a possible source of group inequivalence in Lovaas (1987). Journal of Autism and Developmental Disorders, 28, 211-214.
Chawarska, K., Klin, A., and Volkmar, F. (2003). Automatic attention cueing through eye movement in 2-year-old children with autism. Child Devlopment, 74, 1108-1122.
Fecteau, S., Mottron, L., Berthiaume, C., and Burack, J.A. (2003). Developmental changes of autistic symptoms. Autism, 7, 255-68.
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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
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.
Medical Research Council. (London, December 2001). MRC Review of Autism Research. Epidemiology and Causes. www.mrc.ac.uk
Mottron, L., Dawson, M., Berthiaume, C., and Soulières, I. (2004, May). Peaks of ability reflect G factor in individuals with autism. Presentation at the IMFAR conference. Sacramento, CA.
Rutter, M. (1970). Autistic children: infancy to adulthood. Seminars in Psychiatry, 2, 435-50.
Scheuffgen, K., Happe, F., Anderson, M., and Frith, U. (2000). High "intelligence," low "IQ"? Speed of processing and measured IQ in children with autism. Development and Psychopathology, 12, 83-90.
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.
Smith, T., Klevstrand, M., and Lovaas, O.I. (1995). Behavioral treatment of Rett's disorder: ineffectiveness in three cases. American Journal of Mental Retardation, 100, 317-22.
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.
(2000). Egas Moniz and the origins of psychosurgery: a
review commemorating the 50th anniversary of Moniz's
Nobel Prize. Journal of the History of the
Neurosciences, 9, 22-36.
the full text of the Charter, click here.
further developments see:
|© Michelle Dawson 2004 | Published June 15, 2004|
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