Thursday, November 30, 2006
The Health Canada page elaborates on this government's position, a position now being imposed as public policy:
Despite the frequency of ASD, there is much that is unknown about these disorders. More research is needed to better understand the incidence, causes, effective early screening tools, optimal treatments, and hopefully one day, prevention.
Canada's government has taken the position that autistics have nothing to contribute to society, have no role at all to play in Canada, have no worth or value as autistics, and ideally would not exist at all. This government hopes for a Canada free of autistic people, a Canada where all autistic traits and abilities have been stamped out.
I've phoned someone in Mr Clement's office and asked if they were sure this is what they wanted to promote as public policy. And were they aware of what the consequences would be to autistic peoople, of having our government tell Canadians that autistic people are unwanted and unwelcome in Canada, and that it would be so much better if we were extinguished.
In the recent autism "debates" in Canada's House of Commons, there have been many self-congratulatory comments about how productive it is to have all the major national political parties agreeing on an issue, and working together towards the same goal. It should be clear what this goal is.
The MP Ruby Dhalla articulates the Liberal Party of Canada position about autism:
I am sure this national strategy is going to ensure that we have the proper investment to do further research into whether there are other treatment options available and into how this type of condition can be prevented.
Here is the MP Peter Stoffer, articulating the official position of the New Democratic Party of Canada:
We need to find out what causes autism, what we can do to prevent it from happening, if that is possible.
That's Canada's three major national political parties, and all three agree that autistic people should not exist. Society, according to our government and the major national opposition parties, should consist entirely of non-autistic people. Autistics are sick, and this sickness has to be eradicated, for the good of society.
The MP who is most responsible for these autism "debates" taking place, the Liberal Andy Scott, opened the first "debate" in the House of Commons by referring to the many autism advocates he consulted with before deciding on the future of autistics in Canada:
They are Canadians concerned about something that is unfinished business for Canada.
That unfinished business is the unacceptable continued existence of autistic people in Canada. All our major political parties are determined to make autism into a very finished business. Right now, they want all autistics in medical treatment until we are no longer autistic, but they are also demanding that autism be prevented, so that no more autistic people are born. They don't want autistic people in Canada at all. They see our existence as being wrong, as being diseased, as being a burden on non-autistic people, as being bad for Canada, as being an insult against what Canada stands for. There is no one to disagree with them, as these non-autistic leaders work hard together on their important eugenic agenda.
Tuesday, November 28, 2006
This is from a 2005 editorial by Nancy Minshew in the Journal of Autism and Developmental Disorders, of which she is an associate editor:
A third issue raised by the studies in this issue is the degree to which theories once proposed have been held sacrosanct. The executive function and central coherence theories have held nearly sacred status for at least a decade and a half. This has in some cases meant that papers submitted with data or ideas that did not support these theories were frequently rejected or sternly directed to revisions that conformed. This is not a problem unique to these two theories. This has gone on for as long as there has been autism research. Autism is a field that seems to worship its theories and theories appear to assume a position of far greater value than the data or the search for an answer—the purpose that theories are supposed to serve. Theories are essentially hypotheses or theoretical constructs that formulate what we know into a scientifically reasonable question about what we know and we don’t know but propose to test with the next phase of research. Theories are by definition disposable or under reconstruction and the sooner the better. The goal of the theory is the same as a canoe--to get across or up the stream. Once we learn what we need to know from the trip, we take the canoe apart and use the materials to build the next transport. The near death grip on theories by this field has impeded progress. It has also isolated the field of autism to some extent from mainstream science. Some theories and conceptualizations held within autism are not mainstream science. Somehow autism evolves its own lingo or pragmatics that is idiosyncratic. When this happens, it can repel senior scientists from other fields of expertise highly relevant to autism who find these idiosyncrasies nonsensical and too much of an added burden to deal with. It also confines the field of autism to what it knows rather than stretching outside its traditional behavioral origins to fully embrace neuroscience. Autism needs these scientists and neuroscience. It is important that open mindedness be a goal so that insularity and circular logic is avoided. Autism will not benefit from evolving its own language of science that is different from the mainstream.
Minshew, N. (2005). Ask the editor. Journal of Autism and Developmental Disorders, 35, 877-879.
Monday, November 27, 2006
The first reason is that in Canada, the Labour Code only protects workers who are judged to be "normal", as opposed to all those who are able to perform any particular job. So those who are not deemed "normal" are considered to have a "medical condition", are not protected, and can be obliged to do pretty much anything by their employers, even if it is dangerous to them. E.g., while it is illegal to put a hearing person in danger by not providing proper ear protection in a noisy environment, it is not illegal to put a deaf person in danger by removing from their workplace the kinds of information they need in order to work safely. The deaf person is considered to have a "medical condition", even in a workplace where s/he has advantages over hearing persons, and not to be entitled to a safe workplace under this law. I used this specific example when I argued the appeal.
The second reason is that what I was being asked to do was not part of my job description, and therefore did not fall under the law. That is, if an employer asks you to do something dangerous, you cannot use this law to refuse, if this something is not part of your job description.
The original decision hinged on wording that was only available in one language, an anomaly which caused a lot of dictionary-searching. It was long ago (regardless of Mr Doherty presenting this as news), but I vividly remember the extent to which the original decision was based on semantics.
The first reason, as described above, is problematic. It means if you are not "normal" (by the definition of whoever decides these things), no matter how well you do your work, you can be gratuitously put in danger at any time by your employer, and you do not have the right to refuse to do what they demand. Your only recourse is a human rights case, which would involve losing your job and taking years and years to fight (at your own expense) for an uncertain outcome. However, Mr Doherty is not objecting to this interpretation of the law, but to the fact that I contested it.
In my case, I was gratuitously put in danger, and this continued for a long time with multiple variations on the theme. Mr Doherty's complete response to this is in the link above, including the derisive implication that I was arguing that autism is an occupational hazard. No, Mr Doherty, I was arguing that the consequences of disability-based harassment and discrimination, including the disregarding of relevant laws and contracts, are hazardous in many ways, including to one's safety.
This is my response to Mr Doherty, major league Canadian autism advocate, and his views of an autistic adult attempting to make workplaces safe for autistic people. I've also posted this response here. The CSST (a French acronym) is Quebec's workers health and safety board.
That is an extremely and deliberately misleading subject line.
I had a better safety and work record than most Canada Post letter carriers, and maintained this for a long time. It was recognized, e.g., that I could work safely, accurately and quickly in hazardous conditions that my co-workers refused to work in.
This case involved an illegal (no legal or contractual basis, no credible reason of any kind was ever given) expertise which was scheduled in many contradictory ways, including without notice. Notice was required, both under the law and under the collective agreement.
Provincial but not federal jurisdiction workers are protected from this kind of harassment under a provincial law (ARIAOD, administered by the CSST). This kind of harassment, in my case, set precedents such that no one knew what to do or how to apply the law.
For example, apart from never agreeing with themselves over why an expertise was being demanded (only about half the time was I told it had something to do with the short, long-ago work accident), Canada Post management threatened me with disciplinary action if I refused to see a doctor who did not exist. This "doctor" was not listed as a doctor anywhere in Quebec, and it turned out that indeed, he did not exist.
Throughout the time of this case, and long after, I was at work and doing my job to the usual "exemplary" (Canada Post's word, in writing) standards. My attendance record was recognized as superb, with extremely infrequent absences for any reason.
The expertise was never related to autism, though multiple conflicting reasons for this expertise were given by Canada Post. Sometimes different reasons were given on the same day, as the threat continued for months. The duly certified injury on duty leave lasted 4 days and was my first declared work accident for 8 years. Canada Post failed to ask for an expertise within the time allowed for by the CSST's law (ARIAOD), but continued to demand an expertise for months after the time allowed, though for multiple different and contradictory reasons not founded in any contractual or legal right on their part.
I don't know about the autistics Mr Doherty works with, but it has been very dangerous for me and many other autistic adults to see health-care professionals who have no knowledge of autism--the kind of professional I was being forced to see. This was regardless that it was suggested (by doctors) that I see doctors who were knowledgeable in autism, something I would have been willing to do if a credible reason were provided for an expertise. Instead, the suggestion that I see doctors who had some familiarity with autism (doctors I had never seen before and didn't know of) was rejected by Canada Post.
The obstacle to employment for autistics here is not a failed attempt to protect us from being put into danger via gratuitous threats of an illegal medical expertise. The obstacle comes from a psychologist (a behaviour analyst) who recently informed Canada Post at the national level that there is nothing good about autistic people. This psychologist promoted a dire view of autistics as being less than human (e.g., we have no emotions) and good for nothing (e.g., if we have any abilities, we use them in totally useless ways), which Canada Post took and continues to take to heart. Yes, this psychologist was prosecuted for her grossly biased presentation and for conflict of interest (I was her client) by the Quebec Order of Psychologists, but it was already far too late. Having a long-standing excellent work record, including in the area of safety, does not protect you against this kind of professionally-promoted prejudice.
All of the above has been testified to, complete with hundreds of pages of evidence (some of it publicly available), at the Canadian Human Rights Tribunal, in the first autism-related case referred for a hearing there. This case is the result of my revealing my diagnosis to Canada Post after 11 years of service, and succeeds a previous Canadian Human Rights Commission case that was settled in my favour.
It's unclear what Mr Doherty would have wanted me to do. He does seem to be implying--I'm sure he'll correct me if I'm wrong--that an autistic who knows a medical expertise is likely to be dangerous should not be believed, even when (as in my case) she has medical documentation to back her up. And nor, apparently, should any consideration be given to engaging a medical professional who has some knowledge of autism. This is typical of how my attempts to stay autonomous--and not require a high level of services, and to basically survive--have been dealt with by Canada's important autism advocates.
Sunday, November 26, 2006
Legal decisions--the lower court Auton decisions and the Wynberg trial decision--that grossly dehumanize autistics have been overturned. This has resulted in extreme protests from autism advocates, who cannot tolerate even the possibility that autistics might be human, might have personhood, might merit basic human rights as autistic people. Autism advocates insist that autistics have humanity and are persons and have basic human rights only if and when we are intensively trained via ABA to be less autistic or not autistic at all. Once we can suffiently pass for normal, then and only then may we be considered to be human and treated as such.
The overturned decisions remain, regardless, in our jurisprudence, being quoted in the House of Commons and the Senate and in other legal decisions, and otherwise governing the lives of autistics in Canada.
In contrast, here is some jurisprudence for non-autistic Canadians (I've taken out the citations):
It is an unfortunate truth that the history of disabled persons in Canada is largely one of exclusion and marginalization. Persons with disabilities have too often been excluded from the labour force, denied access to opportunities for social interaction and advancement, subjected to invidious stereotyping and relegated to institutions [...] This historical disadvantage has to a great extent been shaped and perpetuated by the notion that disability is an abnormality or flaw. As a result, disabled persons have not generally been afforded the “equal concern, respect and consideration” that s. 15(1) of the Charter demands. Instead, they have been subjected to paternalistic attitudes of pity and charity, and their entrance into the social mainstream has been conditional upon their emulation of ablebodied
norms [...] One consequence of these attitudes is the persistent social and economic disadvantage faced by the disabled.
Our powerful and influential autism advocates have ensured that it is now inconceivable that autistics would fall under this kind of jurisprudence. Instead, they have demanded and ensured that emulation of the norm is our only avenue to obtain even the most basic human rights. That would include the right not to be abused in institutions, this institutionalization and this abuse being not only condoned but promoted by our autism advocates and our national media as what we deserve--unless we undergo unlimited medically necessary ABA and become sufficiently normal.
The legal decision above continues:
Deaf persons have not escaped this general predicament. Although many of them resist the notion that deafness is an impairment and identify themselves as members of a distinct community with its own language and culture, this does not justify their compelled exclusion from the opportunities and services designed for and otherwise available to the hearing population. For many hearing persons, the dominant perception of deafness is one of silence. This perception has perpetuated ignorance of the needs of deaf persons and has resulted in a society that is for the most part organized as though everyone can hear [...]
This legal decision was handed down by the Supreme Court of Canada almost 10 years ago (Eldridge v. British Columbia (Attorney General),  3 S.C.R. 624). This year, in another legal battle (argued by a Deaf lawyer), sign language has become a de facto official language in Canada. The judge in this case wrote: "It is fundamental to an inclusive society that those with disabilities be accommodated when interacting with the institutions of government."
Nearly 10 years after Auton started its way through the courts, autistics are as far from achieving inclusion or accommodation as is possible. We are considered not only to be abnormal and flawed, but sick, diseased, less than human, and doomed. This is consequent to the work of autism advocates. We are subject not only to pity and charity, but to constant messages that we are unwanted and ghastly burdens, and dreaded and feared inhuman collections of senseless, useless, repulsive and dangerous behaviours. And we are frequently treated as such. This too is the work of autism advocates. We daily live the consequences of "invidious stereotypes" and multiple other forms of denigration, all aggressively promoted by those who claim to represent us and who demand that our dehumanization and denigration be enshrined in our law once and for all.
Tuesday, November 21, 2006
This is the opening from today's Globe and Mail column by Margaret Wente:
It's hard for the rest of us to imagine what it's like to have a child with autism. Imagine a kid who has the Terrible Twos -- forever. A kid who screams for hours, bangs his head and doesn't sleep at night for weeks on end. A child who doesn't speak, is often inconsolable, who bites and hits other kids, and whose diaper you may still be changing when he's 10.
Then Ms Wente introduces one of the sources of this information, who is a leading Canadian autism advocate (and FEAT director):
"My son is in a mainstream class. He goes to other kids' birthday parties," says Jean Lewis. She is the mother of an autistic 12-year-old and also a director of a B.C. parents' lobby group. Where would her son be without treatment? "He wouldn't be living at home," she says. "Without treatment, kids like this are usually institutionalized by the time they're adolescents. They're living in restraints, living in diapers. They have to have their teeth removed because they bite."
Now the "choice" for autistics is either to undergo unlimited "medically necessary" ABA (no other kind will do), or to be institutionalized, to live in restraints and to have our teeth pulled. Maybe institutions have gotten to be old hat. Maybe the powers that be have become inured their daily bombardment of messages that autistics just naturally belong in institutions. So Ms Lewis, being an eminent autism advocate, had to make things a little more compelling.
In Ms Wente's column, Ms Lewis is describing the same autistic boy who Michael Lewis, her husband, promised to institutionalize "immediately" or "shortly thereafter" if ever his ABA program stops for any reason.
I'm pretty sure it's hard for Ms Wente and Ms Lewis to imagine what it's like, to wonder if you'll lose your freedom, again, because so many important people keep dehumanizing you and insisting you don't belong in families or society, but in institutions and in restraints. And then to wonder if, next time, they'll also pull your teeth. Because Ms Lewis says that's what we need. And Ms Wente reports this uncritically.
The end of Ms Wente's column reveals a further source of Ms Wente's information. That would be the Autism Speaks video, "Autism Every Day", which Ms Wente describes as "a glimpse of a day in the life of autism parents". She fails to see "Autism Every Day" as a glimpse at what autistic children have to endure, every day, when they are seen as appalling burdens, when they're talked around and shunted around as though they're non-sentient props. Ms Wente demonstrates that when you dehumanize autistics enough, as Ms Lewis so proficiently does, right down to pulling our teeth if we don't behave, then we disappear altogether, so that the only humans Ms Wente can perceive in "Autism Every Day" are the parents.
Monday, November 20, 2006
This is from Lovaas et al. (1967):
Reinforcement was given in the form of small bites of the child's food, such as pieces of Sugar Flakes, a breakfast cereal. As learning progressed, evidenced by the fact that the child might occasionally emit an approximation to the current response without prompts, food reinforcement was withheld for prompted behavior and only delivered contingent upon unprompted behavior. This step is a rather important one in the training, since continual reinforcement for prompted behavior probably would prevent a shift into imitative responding.
The use of food as reinforcement apparently "forces" the child to behave correctly. We have observed that some children would not acquire new responses unless it was impossible for them to survive without the new learning, i.e., unless their sustenance was contingent upon the new learning. Stated differently, social rewards, such as attention and approval, which effectively control the behavior of most individuals were inadequate during these early stages of learning. The child not only did not learn, but became very uncooperative and tantrumous.
Lovaas, O.I., Freitas, L., Nelson, K., & Whalen, C. (1967). The establishment of imitation and its use for the development of complex behavior in schizophrenic children. Behaviour Research and Therapy, 5, 171-181.
Sunday, November 19, 2006
A Canadian Senate committee (the Standing Committee on Social Affairs, Science and Technology) is holding hearings about autism treatment funding, and about a national autism strategy, at the demand of Senator Jim Munson. Senator Munson equates autism with cancer and promotes the view that unless autistics get early ABA/IBI, almost all of us just naturally belong in institutions. This view is unsupported by the existing science and instead reflects Senator Munson's view of autistics as sick, substandard human beings who, unless we become much less autistic or not autistic at all, do not belong in society. Senator Munson is also one of the Senators in the Committee holding hearings to decide the future of autistics in Canada.
This committee has just decided to ban autistics from participating in the major meeting of their series of autism hearings. This is a round table meeting scheduled for December 8, 2006. The purpose of the round table is to discuss autism research in Canada. Non-autistic autism researchers and two parent organizations (which are also appearing as witnesses elsewhere in the hearings) are invited. These parent organizations are the FEAT-like Autism Society Canada and the DAN!-like Autism Canada Foundation.
Autistics have been banned before. One of the ways our leaders, our autism community leaders and our political leaders, let us know that autistics are substandard, and therefore put us in our place, is by making a rule that autistics aren't allowed to participate when autism research is being discussed. Research is a non-autistics only water fountain. Autistics have a separate, unequal water fountain down the hall, a place where research is never discussed, where decisions about research are never made. We're not allowed to go near that non-autistics only fountain. It's against the rules.
The Canadian Institutes of Health Research of course agrees to ban autistics--look at their name, Canadian Institutes of Health Research, which is an automatic instruction for autistics to give up our seats. Or rather, stay away from that fountain. One of the groups listed as a witness at the Senate autism hearings is the Canadian Autism Intervention Research Network. They've banned autistics from their fancy conferences too. It's not hard--they're invitation only conferences, so they just don't invite autistics. And they have no autistics anywhere in their governance. After all, they too have Research in their name, and everyone knows that's a non-autistics only water fountain. You have to figure it was a priori guaranteed that the Canadian Autism Research Workshop, which combined Autism Society Canada--a paragon of putting autistics in our place, the CIHR, Autism Speaks (who exclude autistics automatically, as a sort of reflex), as well as some people from CAIRN, and a whole lot of government people, like the Office for Disability Issues and Health Canada, would bar autistics, except as lunch time entertainment for the important non-autistic decision-makers.
Similarly, the Senate Committee people told me that if I appear in their hearings, I can't be put with a particular group of witnesses, because these witnesses are researchers. This Committee just can't have autistics near that non-autistics only fountain. We just get in the way and mess things up, being the substandard types we are (the sick, if not cancerous, ABA/IBI-deprived autistics Senator Munson says belong in institutions). Parents, on the other hand, are autism research experts and essential contributing stakeholders by definition, so long as they're non-autistic. If you're an autistic parent, sorry, your fountain is down the hall and nowhere near anything related to research. That's the rules.
I've had it explained to me, many times, v-e-r-y s-l-o-w-l-y, that this is research, as if I only had to be told this important fact to realize how totally absurd it is to even imagine that autistics would have anything to contribute or anything at stake. The decision-makers I've spoken with have been utterly baffled when I didn't fold up and skitter away in abject shame when they said that magic word, research, the one supposed to make all autistics disappear instantly.
This Senate Committee claims they'll have a few autistic witnesses in their hearings, all at a safe distance from that non-autistics only fountain, though none has yet appeared and none is yet in the published schedule. Indeed, on one day next week, they have a full slate of six autism organizations (including one which isn't an autism organization but pretends to be), none of which is represented by an autistic person.
In a their previous report (warning, big pdf), this very same Senate Committee wrote:
In future, we hope to have the opportunity to undertake a thematic study on autism. Meanwhile, we advocate a fuller debate among all stakeholders. In particular, the Committee believes that persons living with autism must be recognized as full and equal partners in the discussion.
Full and equal? Excuse me Senators, but you've banned us, on the grounds that we don't belong at the table when major and crucial decisions about us--decisions about autism research--are being hammered out.
I've raised a ruckus about this. I don't see a lot of issues a whole lot more important than the "full and equal" participation of autistics in discussions and decisions about research priority, policy, and design. Right now, very nearly one hundred per cent of these discussions and decisions are happening with zero per cent autistic input. And now our political leaders in the Canadian Senate have banned us again. Shame on them, for perpetuating grossly prejudicial stereotypes about autistics and autism research. Shame on them, for seeing us as unwanted impediments to the important non-autistic people they welcome to sit at the round table and decide our future. Shame on them, for refusing to see us as essential contributors, both to society and to any discussion about autism research. Shame on them, for refusing to see us as human beings who live and suffer the consequences of decisions made about us in our absence. Etc. Shame, shame, shame.
Saturday, November 18, 2006
The introduction states that cancer kills 193 Canadians a day, or about 70,000 a year. Canada doesn't have a national cancer strategy, as is noted in an accompanying editorial. The words "scourge", "torment", "affliction" and "horrific" are used in this editorial. We are so used to those words being used to describe the existence of healthy autistic people.
Autism is routinely equated with cancer. Or we're told it's worse than cancer, because it doesn't kill us--if only autism were fatal, we would all be better off. The autism advocate Andrew Kavchak states that his autistic son would be better off if he had cancer. The famous behaviour analyst, Gina Green, equates autism with acute lymphocytic leukemia (ALL), and ABA-based autism interventions with treatment for this kind of malignant cancer. The only difference between autism and leukemia that Dr Green can spot is that there's "probably more known scientifically about ALL than autism" and "there are reliable, objective tests for diagnosing ALL".
Nowhere does Dr Green mention that without treatment, ALL kills people in about 3 months.
I don't think ABA advocates like Dr Green, and Mr Kavchak, and so many others who glibly use cancer analogies, really see any difference between a cancer that kills people and autistic traits and abilities. They see autistic traits and abilities as needing eradication just as much as malignant cancerous cells and tumours.
Canada is much more likely to get a national autism strategy--with the goal not of helping autistic people, but of attacking autistic traits and abilities as though they were malignant--than a national cancer strategy. Parents with autistic children who, according to their parents, are as sick as or even sicker than children dying of cancer command a lot of respect, as they speak of devastation and tragedy, of how their children are doomed, of losing a child to autism, as if an autistic child is a dead child. No one has questioned them, or their goal of having autism treated as if it were a dreaded fatal disease.
Meanwhile, 193 people are killed by cancer every day in Canada.
Green, G. (2006). Foreward. In: M. Keenan, M. Henderson, K.P. Kerr, & K. Dillenburger (Eds.), Applied Behaviour Analysis and Autism. London, UK: Jessica Kingsley.
Friday, November 17, 2006
There won't be a last word on aversives...
... until autism advocates (including politicians, parents, and professionals), in Canada and elsewhere, stop promoting Lovaas (1987) and its follow-up (McEachin et al., 1993) as evidence that ABA-based interventions are "effective".
In reality, this famous study is evidence that an early intensive behaviour intervention wasn't effective at all, for even a minority of autistics--not without the unacceptable systematic use of physical punishment. Lovaas and colleagues instead provide guidance in how to spot ineffective (meaning, e.g., grossly inadequate, and possibly harmful) interventions or programs. These would be interventions or programs accompanied by claims or evidence that unless autistics are deliberately and systematically hurt, we will fail to learn and/or are doomed. Would our influential autism advocates call a preschool program for non-autistics "effective" if the kids only made meaningful progress when they were hit? And if our eminent autism advocates wouldn't, why are they insisting that autistics deserve such lousy standards?
... until autism advocates stop using the Auton trial decision, the New York State Dept. of Health report, and the US Surgeon General's report as "proof" that ABA-based interventions are "effective".
All these popular lobbying tools are heavily dependent on Lovaas (1987) and McEachin et al. (1993). Using them sends the same message as the invariable flourishing of the famous 47%: that it's acceptable to use aversives on autistic children when ABA-based interventions do not otherwise work. This is the current-day rationale for existing aversive interventions, including those provided at the JRC.
... until autism advocates stop claiming that ABA-based interventions are "effective" for all autistics, and that all autistics are doomed without ABA.
This follows from the previous point. According to the published data, and by their own standards, ABA programs fail more often than not; in the current climate, autistics who do poorly in ABA programs are likely to stay in them indefinitely. But there are also some parents and professionals who claim that when non-aversive ABA fails, the necessary next step is the use of aversives. There's Matson (2006), who raises concerns that non-aversive ABA programs are excluding autistic children who really need aversives. Kit Weintraub's letters and the vehement support for the JRC, the routine use of risperidone or other anti-psychotics as part of some ABA programs, etc., are examples of how uncritical cheerleading of ABA programs can be seriously hazardous for autistics who do poorly in ABA.
... until autism advocates stop their extraordinary campaign to deny autistics basic standards of science and ethics, and basic human rights.
This campaign (here's a popular example; links to another popular example, Canada's autism community flagship website, can be found within my response to it) being, with occasional digressions, the subject of this blog ... So long as autistics are feared, dreaded, unwanted, dehumanized, reduced to drains on society, written off, and have our voices denied, there will always be those who can, with impunity, claim that we really need to be hurt, or we are doomed. So long as it is so vigorously argued that there is nothing worse than being autistic, then it will remain acceptable to treat us in ways that would never be acceptable for other human beings.
... until aversives are illegal, everywhere.
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.
Matson, J.L. (in press). Determining treatment outcome in early intervention programs for autism spectrum disorders: A critical analysis of measurement issues in learning based interventions. Research in Developmental Disabilities.
McEachin, J.J., Smith, T., & Lovaas, O.I. (1993). Long-term outcome for children with autism who received early intensive behavioral treatment. American Journal on Mental Retardation, 97, 359-72.
Tuesday, November 14, 2006
Comments submitted to JRC from the mother of two autistic children
From: email@example.com [mailto:firstname.lastname@example.org]
Sent: Wednesday, March 29, 2006 6:40 AM
To: Burt, Sarah
Subject: Comments Submitted by Kit Weintraub
Comments: Dear Judge Rotenberg Center, Just wanted to say that I saw Dr. Israel on CNN with Anderson Copper and Bennett Leventhal. I was so impressed by Dr. Israel. I have two kids with autism, one, a girl, twelve, who is extremely self-injurious. We have run a very high quality ABA program for her for years, but could never get rid of the self-injurious behaviors. Only on risperdal are they reduced, and we have seen her gain close to 100 lbs on the medication. We have had all sorts of behavioral experts come in and try to extinguish the behavior with positive behavioral interventions, unfortunately, they did not work. No one wants to try electric shock with their child, it is a last resort, but I would do it in a heartbeat if I could get my precious child to stop hurting herself. Is the risperdal less abusive? Weight gain, tardive dyskinesia, disabetes, Dr. Leventhal has no answers. I am sorry you had to be subjected to his condemnation, but you carried yourself with grace and dignity. Thank you. Kit Weintraub, mother to Emily Weintraub PS I had to check admission in order to send this, unfortunately, in Wisconsin, there is no way our district would pay for the school. I am checking admission in order to send the email, this is really just a comment. PS, I sent a similar comment to Anderson Cooper.
From: Kit Weintraub
Sent: Wednesday, March 29, 2006 7:48 PM
To: Israel, Matthew
Subject: Re: Comments Submitted by Kit Weintraub
Thanks, Dr. Israel. You are welcome to use my comments on your blog. I have been a very outspoken advocate for behavioral treatments that raise the quality of life for our children. It is not easy to stand up for the truth, and the truth is, for some kids, aversives are all that keep them from killing themselves or others. No one should be judged or condemned for earnestly trying to extinguish dangerous behaviors in children who cannot be taught by any other means. It never fails to amaze me that people don't get the difference between beating a child and using an aversive under controlled circumstances in the presence of extreme behavior that has not responded to anything. Leventhal was lying. There are kids for whom nothing besides aversive behavioral interventions works short of drugging them into a stupor. Good God, what parent wants to be in the position, or what clinician, for that matter, of choosing electric shock or watching their child put their eye out? Bottom line is, I guess most people would rather see the kid put their eye out, and just wring their hands and shrug their shoulders. I guess I am preaching to the choir. I have been lambasted, too, for supporting aversives in extreme last-resort circumstances too, so I guess I can somewhat relate to what you and your staff must be going through. It is hard. No one likes being called a child abuser.
Thanks for all that you do.
mother to Emily and Nicholas Weintraub
As I wrote earlier, the JRC isn't widely admired by behaviour analysts, and I've assumed it isn't admired by autism advocates in Canada and elsewhere. I would never dispute Ms Weintraub's claim that she is a "very outspoken advocate", and she clearly has many important supporters, among whom ASAT and Canada's leading autism advocates are prominent. For this reason, among many others, it's important to know what exactly Ms Weintraub is advocating for, and what some of the consequences of this kind of advocacy are, for autistic children and adults.
Sunday, November 12, 2006
Another of her claims is that behaviour analysts didn't stop systematically using physical aversives in early ABA programs because this practice became unacceptable. Instead, behaviour analysts found that aversives weren't genuinely effective, and altered their practices accordingly. To support this view, Dr Freeman provides evidence from a 1996 Canadian TV documentary in which Ivar Lovaas appeared and explained the methodological reasons why he abandoned aversives. She also provides a quote from Smith and Lovaas (1997), and also lists three "replication studies" in which aversives weren't used, but which had "significant and impressive" results.
Is Dr Freeman right?
Re Dr Lovaas' turn on TV, using a TV program as a credible source for scientific information seems like a bad idea. But it's consistent with the standards that our finest autism advocates have decided are good for autistics. Autism advocates in Canada have also used education numbers as epidemiology. They've promoted the use of legal decisions, opinion polls, "fact" sheets, political speeches and media reports as credible sources of information about autism and autism treatment, often without bothering with primary sources in peer-reviewed science (see an example here).
Setting aside Dr Lovaas' TV appearance, Smith and Lovaas (1997) is a published rejoinder to criticisms of the UCLA Young Autism Project. It doesn't contain data reporting the success of a non-aversive early ABA program. Instead, in responding to concerns that Lovaas (1987) depended on the use of physical aversives, Smith and Lovaas state that since the time that study began (in the early 1970s), advances in research have "rendered such procedures unnecessary". However, this paper provides no evidence, and no references, indicating what these advances might may be, when they were introduced, when they replaced aversives at UCLA, etc.
As for the three "replication studies" cited by Dr Freeman, one is an uncontrolled trial (Anderson et al., 1987), one is a retrospective study (not a true experimental design) which has been roundly condemned by Dr Lovaas (Sheinkopf & Seigel, 1998; Lovas, 2002), and one is a non-randomized controlled trial which now has a presented follow-up showing that the few autistic children who did well did not maintain this ten years later (Birnbrauer & Leach, 1993, 2006). Not one of these three studies reports even one child who achieved normal functioning in the short term, by the criteria in Lovaas (1987).
So what other evidence is there, besides Dr Freeman's, about why and when aversives stopped being used at UCLA in ABA programs for autistic kids? Is there any evidence for when those advances in research, the ones making aversives obsolete, actually occurred?
Lovaas (2002) writes:
Contingent aversives were employed in the Lovaas (1987) study. Many states now prohibit the use of aversives, and many parents object to such treatment. Either of these factors could prevent replication of the Lovaas (1987) study. However, although the UCLA Young Autism Project no longer uses aversives, we have taken advantage of alternatives to aversives developed during and after the time of the 1987 study was completed (treatment in the Lovaas, 1987, study took place between 1970 and 1984).
Again, there are no references pointing to primary sources reporting data from non-aversive early ABA programs. However, Dr Lovaas doesn't appear to be claiming, as Dr Freeman does, that the unacceptability of aversives (including their illegality) played no role at all in altering the practices of behaviour analysts.
Then there's Smith, Groen and Wynn (2000, 2001). This is the only existing randomized controlled trial of an early ABA program. This study took place at UCLA, involved researchers trained and overseen by Dr Lovaas, and involved, in sequence, all children who were referred to the UCLA YAP between 1989 and 1992. The authors report how their treatment differed from the treatment in Lovaas (1987):
Finally, though contingent aversives were employed briefly with the first 4 children, they were then stopped for all children, whereas Lovaas (1987) employed this intervention more extensively.
So we now know when aversives stopped being used at UCLA: sometime between the 4th and 5th referred child in Smith et al. (2000). It seems unlikely that the original plan was to use aversives with some children and not others; there is, in any case, no mention of this by the authors, who report other abandoned plans. Instead, it seems more plausible that the authors had started by using aversives with the intention of having this as part of the treatment for all the experimental group children. Something then happened between child 4 and child 5 such that child 5 (and all the children after) didn't receive aversives at all, and aversives were removed from the treatment of the first 4 children.
This seems to narrow down the time when, apparently, there were these reported advances in research, and it was decided that they should supplant the use of the now unnecessary and ineffective aversives. Or possibly something else happened. In 1991, a law was passed in California, making the use of physical punishment in behaviour programs illegal. This law was first introduced in 1990. In 1989, it may have already been known that such a law was going to be proposed.
So we know that aversives were considered "effective" at UCLA at least into 1989. If they were not, it would have been grossly unethical to use them on the first 4 children in Smith et al. (2000). It's possible that sometime between child 4 and child 5 in Smith et al. (2000), there was suddenly an advance in research allowing for the abandonment of the suddenly non-effective and unnecessary aversives (for which these researchers must have received the requisite institutional review board permission). Or it's possible that this was about the time it became known that this procedure--physical punishment--was likely to become illegal in California.
Dr Freeman's book was published in 2003, but she doesn't mention Smith et al. (2000), the only direct evidence of exactly when aversives were abandoned by the UCLA YAP. As to why, there is no way precisely to know, unless Drs Lovaas or Smith decide to disclose this information. However, the evidence doesn't entirely support Dr Freeman's account. There's still the problem of Dr Lovaas taking the trouble to prove how effective contingent aversives were in his famous 1987 paper. And the available evidence does strain the credibility of the assertion that it was advances in research which solely were responsible for the UCLA YAP's apparently sudden about-face re aversives.
Anderson, S.R., Avery, D.L., DiPietro, E.K., Edwards, G.L., & Christian, W.P. (1987). Intensive home-based intervention with autistic children. Education and Treatment of Children, 10, 352–366.
Birnbrauer J.S., & Leach, D.J. (1993). The Murdoch Early Intervention Program after two years. Behaviour Change, 10, 63-74
Birnbrauer J.S., & Leach, D.J. (2006, June). The Murdoch Early Intervention Program at 10 years. Association for Behavior Analysis Annual Conference abstract. Atlanta, GA.
Freeman, S.K. (2003). Science for sale in the autism wars. Lynden, WA: SKF Books.
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 . (2002) Teaching individuals with developmental delays: Basic intervention techniques. Austin, TX: Pro-Ed.
Sheinkopf, S.J., & Siegel, B. (1998). Home-based behavioral treatment of young children with autism. Journal of Autism and Developmental Disorders, 28, 15–23.
Smith, T., Groen, A.D., & Wynn, J.W. (2000, 2001). Randomized trial of intensive early intervention for children with pervasive developmental disorder. American Journal on Mental Retardation, 105, 269-85. Erratum in American Journal on Mental Retardation, 105, 508. Erratum in American Journal on Mental Retardation, 106, 208.
Smith, T., & Lovaas, O.I. (1997). The UCLA Young Autism Project: A reply to Gresham and McMillan. Behavioral Disorders, 22, 202– 218.
Saturday, November 11, 2006
"I try not to dwell on it ... I try not to look at my kids like they're sick. I know they have a problem but I try not to look at them that way. I try not to treat them any different than any mother treats her children."
"I started crying and I was just sobbing because I thought there wasn't anything I could do about it... The child you thought you were going to have really dies when you find that out. You've got to become acclimated and accepting of the fact that that person is gone... it was the most devastating thing you could imagine... The public needs to get it that this is a common, expensive and devastating disease that needs the full attention of society."
Well, it's not hard to spot the second set of parents as having an autistic child. The media story is about these parents' "anguish". Here's how their devastating autistic child is described:
Jon likes activities such as rollerblading, swimming and, most recently, riding his new bike. Jon, who has three older sisters, also loves to read. "He seems to read better than he talks... It comes easy to him, so we're trying to run with it."
The first set of parents don't have autistic children, though at one point, one of their children received an autism diagnosis, which turned out to be incorrect. Here is how their non-autistic children are described:
Five-year-old Jamie and two-and-a-half-year-old Carson have Batten disease, a fatal, inherited nervous system disorder that causes the brain to shrink and shut down over time, eventually robbing its young victims of their speech, sight and motor abilities. There is no known cure or prevention for it... Jamie can't speak, see or move much on her own anymore. She has to be fed through a tube and carried wherever she needs to go. Although still sighted and mobile, Carson has lost the few words he had picked up, including "mom."
This story finishes with a short, accurate (so far as I can tell) section of information about Batten's, including that children don't live longer than 8-12 years, 20 at the outside.
In Canada there are autism advocates, including political leaders, who claim there is no worse nightmare for any parent, nothing more devastating, no worse anguish, than to have an autistic child. They also claim that autism is the most severe of all neurological disorders, that is, it is worse than fatal childhood neurological disorders like Batten's. This distortion of reality accurately reflects how they see autistic lives.
Jaime and Carson's parents have been through a lot. Their first child died at one month. Their two other children have a fatal condition. The only treatment offered that might prevent them from dying is very experimental, unproven, expensive, and dangerous. Here is the only statement alluding to the care required for these children, neither of whom speaks, one of whom has no self-care abilities at all:
Keeping's Aunt Suzy and two home care workers help out with Jamie's and Carson's care.
I don't know where the calm, dignity and grace shown by Jamie and Carson's parents comes from, but they provide a perspective that's completely missing from the hysteria surrounding the supposed autism crisis.
Thursday, November 09, 2006
Lovaas (1987) identifies "a slap on the thigh" (along with "a loud 'no'") as part of the treatment for the 19 autistic children in the experimental group, but not for the 19 autistic children in Control Group 1, in his main experiment. By his "main experiment", I mean the non-randomized controlled trial with the celebrated 47% rate of "normal functioning" as its experimental group's outcome. This use of aversives is reiterated in Lovaas and Smith's (1988) more detailed description of the study reported in Lovaas (1987).
However, as I've previously written, Dr Lovaas also took measures to demonstrate that this "aversive procedure", as Dr Freeman puts it in her book, was an effective and indeed essential component in the treatment received by the 19 experimental group children. This involved what Dr Lovaas called a "within-subjects replication design", in which the use of physical aversives was manipulated in four children from the experimental group and four from Control Group 1. This study-within-a-study is reported to be a success:
During baseline, when the contingent-aversive component was absent, small and unstable reductions were observed in the large amount of inappropriate behaviors, and similar small and unstable increases were observed in appropriate baheviors such as play and language. These changes were insufficient to allow for the subjects' successful mainstreaming. Introduction of contingent aversives resulted in a sudden and stable reduction in the inappropriate behaviors and a sudden and stable increase in appropriate behaviors. (p7)
Dr Lovaas concludes, about contingent aversives, that
...at least one component in the treatment program functioned to produce change, which helps to reduce the effect of placebo variables. (p7)
...the within-subjects study showed that at least one treatment component contributed to the favorable outcome in the intensive treatment (experimental) group. (p8)
In the within-subjects studies that were reported, contingent aversives were isolated as one significant variable. Therefore, it is unlikely that treatment effects could be repeated without this component. (p8)
Two other papers from Dr Lovaas' group from around the same time (Epstein et al., 1985, which reports on 6 of the 19 experimental group children; and Lovaas et al., 1987, which describes part of the study-within-the-study) also refer to the importance of contingent aversives in the study design and findings which were later reported in Lovaas (1987).
The literature leaves no doubt that all 19 autistic children in the experimental group in Lovaas (1987) were subject to contingent aversives. There's also ample evidence that this "treatment component" was, in a separate experiment involving 4 experimental and 4 control group children, found then argued to be essential in achieving the famous result in the main experiment in Lovaas (1987). Dr Freeman's misreporting of the literature serves her purpose, in dismissing as "spurious" any concerns about aversives. But it also exemplifies the disrespect our most important autism advocates have for peer-reviewed science.
In fact, there's a later ABA intervention study from UCLA in which only four autistic children in an experimental group were subject to contingent aversives, but Dr Freeman does not mention this study or reference it in her book. That's going to be part three.
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. Lynden, WA: SKF Books.
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, 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.
Wednesday, November 08, 2006
Her major point is that aversives are no longer used. They're a relic of the past. This point is frequently made by autism advocates. It was made in the Supreme Court of Canada Auton hearing in 2004, by the Auton parents' lawyer. ABA parents don't want to have anything to do with aversives, which are now ancient history. Everyone knows ABA programs are all positive these days. So aversives are an irrelevant non-issue, and anyone saying otherwise is grossly misguided (at least).
This position is partly right. For a while now, aversives have no longer been part of routine ABA-based autism interventions.
On the other hand, the one published study invariably used by autism advocates to argue for the effectiveness of ABA programs is Lovaas (1987). According to this study's author and its design, its famous result, those 9 of 19 indistinguishable kids, is dependent on the use of contingent aversives.
Autism advocates have also used the Auton trial decision, the US Surgeon's General's report, and the New York State Department of Health guidelines as proof that ABA-based interventions are effective and/or "medically necessary". All three of these favourite lobbying tools are heavily dependent on Lovaas (1987) and its follow-up (McEachin et al., 1993).
Autism advocates also contend that there are multiple replications of Lovaas (1987). There's no evidence to support this claim, not among the very few existing autism-ABA controlled trials, but let's say they're actually right about this. Then they continue to highlight and promote an aversive-based study when alternative, non-aversive studies are available.
This seems like odd behaviour for ABA advocates whose position is that aversives are an irrelevant relic of bygone days.
There are other reasons for not forgetting about aversives, which is in any case difficult to do when Dr Lovaas' famous 47% continues to be a staple of ABA parent lobbying efforts.
One is that aversives continue to be promoted as a necessary part of ABA programs for some autistics in some circumstances. I'm pretty sure Canada's autism advocates would strongly oppose the practices of the Judge Rotenberg Centre, where extreme aversives are used, and the JRC is not generally respected or promoted among behaviour analysts. No one should forget about the "students" at the JRC and what they have to endure. But nor should it be overlooked that some very respected behaviour analysts continue to promote the necessity of aversives in some cases. For example, Richard Foxx recently authored a book chapter about the "myth" of non-aversive treatment for "severe" behaviour (aggression, self-injury; Foxx, 2005). Dr Foxx is one of the best known and most respected behaviour analysts in the world. He was also recently an expert witness in support of ABA parents in a British Columbia legal case. James Mulick, another highly respected behaviour analyst known for his work in autism, recently was an author of a published study using electric shock to treat self-injury. Dr Mulick was an expert witness for the ABA parents in Auton. While those in charge of the JRC may be pariahs in the behaviour analytic and autism advocacy communities, Drs Foxx and Mulick are definitely not.
Another reason not to dismiss any mention of aversives as a "ruse" is that we should learn from the past and from the suffering of others. We shouldn't forget how utterly wrong all those important behaviour analysts--Lovaas, Carr, Risley, Baer, Schreibman, Koegel, etc.--were when they were claiming that without aversives, autistics were doomed. We should all remember that Lichstein and Schreibman (1976), in a review of multiple behaviour analytic interventions using electric shock on autistic children, stated that the main side effect of using electric shock was "positive emotional behavior". They were saying that electric shock made autistics happy, a claim it is hard to imagine being made about typical children. Serious errors in judgment, extreme lapses in ethics, grossly inaccurate observations, etc., have been made and reported throughout the history of behaviour analytic intervention research and this has hurt autistics. We should all remember that.
Auton et al. v. AGBC, 2000 BCSC 1142 (CanLII)
Foxx, R.M. (2005). The National Institutes of Health Consensus Development Conference on the Treatment of Destructive Behaviors: A study in professional politics. In J.W. Jacobson, R.M. Foxx & J.A. Mulick, Eds., Controversial Therapies for Developmental Disabilities. Mahwah, NJ: Lawrence Erlbaum Associates.
Foxx, R.M. (2005). Severe aggressive and self-destructive behavior: The myth of non-aversive treatment of severe behavior. In J.W. Jacobson, R.M. Foxx & J.A. Mulick, Eds., Controversial Therapies for Developmental Disabilities. Mahwah, NJ: Lawrence Erlbaum Associates.
Hewko v. B.C., 2006 BCSC 1638
Lichstein, K.L. & Schreibman, L. (1976). Employing electric shock with autistic children: A review of the side effects. Journal of Autism and Childhood Schizophrenia, 6, 163-173.
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.
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 on Mental Retardation, 97, 359-72.
Salvy, S. J., Mulick, J. A., Butter, E., Kahng, R., & Linscheid, T. R. (2004). Contingent electric shock (SIBIS) and a conditioned punisher eliminate severe head banging in a preschool child. Behavioral Interventions, 19, 1-14.
Tuesday, November 07, 2006
Here is Hermelin and O'Connor (1990), writing about Michael, the "subject":
Both the subject's parents have degrees in mathematics although neither works as a professional mathematician. When they told us of their son's numerical ability we asked whether he could identify prime numbers. As he had not previously been confronted with such a task, some primes were slipped into a list of numbers which he was asked to factorize. In his mother's words, "When he came to these, he looked at me as if I were mad."
Anderson, M., O'Connor, N., & Hermelin, B. (1999). A specific calculating ability. Intelligence, 26, 383-403.
Hermelin, B., & O'Connor, N. (1990). Factors and primes: a specific numerical ability. Psychological Medicine, 20, 163-169.
Monday, November 06, 2006
He was held down and drowned in his bathtub by his mother, Danielle Blais. She was charged with first degree murder, then this was reduced to manslaughter, to which she pleaded guilty.
Charles-Antoine's murder received a lot of media coverage. Autism society officials from Montreal and elsewhere went all out. They wanted everyone to know how devastating it is to have an autistic child, and how understandable it is that a parent would kill such a child. They said that Danielle Blais' life was a nightmare and that it was wrong to punish her.
Parents of autistic children showered Ms Blais with letters of support. They raised money for Ms Blais. They held a demonstration to support her and to demand the funding of one specific autism treatment, which was widely claimed to be the only way to prevent more autistic children from being killed by their parents. Carmen Lahaie, President of Montreal's autism society, stated in the media that Charles-Antoine was "happy now" that he was dead. The media published many stories about the "tragedy" of autism. On the news, it was reported that parents of autistic children wanted Ms Blais to represent them.
In court, Ms Lahaie testified in support of Ms Blais. According to the judgment signed by Justice Jean B. Falerdeau, Ms Lahaie
...explained how much of a burden it is for parents to take care of an autistic child...
Also, Ms Lahaie
...is willing to hire Accused for 21 hours per week at the foundation of the Société de l'autisme, when Accused is released.
In his summary of the evidence, Justice Falerdeau wrote about Ms Blais,
...she did not want to leave her son alone or impose on others the burden of taking care of an autistic child.
In his review of the jurisprudence, he noted about Ms Blais that she
...could be employed in helping the parents of autistic children.
And in his summary of sentencing issues, he wrote:
It is clear that the accused does not represent a danger for society; she could work and even help the parents of autistic children.
In the summer of 1997, Ms Blais was sentenced not to jail, but to a year in a community residential centre, and she was hired as a representative--a sort of role model--by Montreal's autism society, as promised by Ms Lahaie.
When I heard this on the national news, I phoned Ms Lahaie, stunned. What are you doing, I asked. She said, you can't understand, our children have ruined our lives.
In 2003, I spoke with Justice Falerdeau, and with the two lawyers involved in this case. It was clear that Justice Falerdeau's decision was based on the evidence before him. It was not even considered that having an autistic child was anything less than devastating. It was not even considered that Charles-Antoine was anything but the burden described by the President of Montreal's autism society. Everyone saw Charles-Antoine as a burden. No one questioned this. And in the media, Ms Lahaie implied that he was better off dead--happy, to be murdered.
I have thought about the life and death of Charles-Antoine Blais every day since that day he was murdered. I'm ashamed I did not speak out at the time more than I did. I was not used to autism advocacy. I thought, what if they are right? They were in charge, after all, making all the decisions, deciding our future. They were the authorities, the people you have to go to, if you are autistic and need help and information. I didn't know any other autistic people, in 1996 and 1997. It would be many years before I got online and found I wasn't the only one who thought what happened was horribly wrong.
Charles-Antoine Blais would be 16 now, if he had not been seen as a burden and killed. I never found a photo of him, except for one in La Presse of his body being removed from his house, in his city, where his life was devalued and taken away from him. Ten years after he was murdered, autistics are still routinely described as devastating and as burdens, including by our political leaders. Charles-Antoine Blais' memory has not been respected.
Saturday, November 04, 2006
Andrew, the willing, able, but unemployable autistic young man in this article, is described by his mother Anne Bauer as,
Lost when it comes to anything social...
Ms Bauer describes in some detail Andrew's apparently profound social deficit:
He's also one of the most acute, sensitive young men I've ever known.
Above all, he's eerily, compulsively responsible. I was a single mother for five years, and when I left the house, I put him in charge. I would come back to a spotless kitchen and a pile of laundered and folded clothes on my bed.
...the manager offered Andrew a cup of coffee and my son - ever conscious of the rules - insisted on paying for it...
He was unfailingly patient and kind.
Now let's look at the social abilities of some of the other people in this article:
Target administers a computerized psychological screening test designed to eliminate people on the outer edges of the bell curve. People like Andrew.
... he was turned down, the volunteer coordinator told me, because the hiring manager thought him odd.
One screener there was uncomfortable with my son: She had called him - he apologized before saying the words - "a potential liability."
So Andrew is acute, sensitive, considerate, responsible, courteous, reliable, and unfailingly patient and kind. But he is also described as being lost when it comes to anything social.
Then there are some other people in this article. They're busy "eliminating" from employment anyone suspected of being atypical. They're refusing to consider a competent person for a job because he is "odd". They're writing off a fully qualified applicant as "a potential liability" because he is disabled. But no one comments on how totally lost these other people are when it comes to anything social. These other people encounter Andrew and fail to see him as human, fail to see his remarkable and glaringly evident abilities, and fail to put themselves in his shoes. They flunk theory of mind and empathy with flying colours, displaying what would--if they were autistic--be considered a profound social deficit. Never mind that some of these other people are so anti-social that they appear to be breaking the law--that's another issue.
This reminds me of Autism Society Canada, which spent a lot of time informing the Canadian public (including employers), as well as governments, that autistics are a "lifetime liability", with a dollar figure attached to tell everyone just how big a "lifetime liability" we are. ASC's certainty that autistics are a "lifetime liability" was repeated many times over in ASC's application to intervene in the Auton Supreme Court of Canada hearings. Yet ASC, an organization overwhelmingly by and for non-autistics, would be the first to underline the poor social abilities of autistics, and to declare that autism is characterized by a profound social deficit.
First, it is said, incorrectly, that Lovaas and his followers purport to claim that Lovaas Autism Treatment “cures” autism. In fact, neither Lovaas nor those who support him have ever claimed that Lovaas therapy “cures” autism.
So is Madame Justice Allen, the trial judge in Auton, correct?
From her own decision, 36 paragraphs after the statement above, here is Justice Allen again:
Providing a number of supportive services to a disorder that with treatment we know that half could recover, is tantamount to withholding treatment and continuing with support and respite services for AIDS patients after a treatment that can cure half of them has been discovered.
In fact, this is Justice Allen quoting directly from the British Columbia behaviour analyst Glen Davies. Dr Davies (who is not an MD) was an expert witness for the ABA parents in Auton, and is undoubtedly an enthusiastic supporter of Ivar Lovaas. This reads like a claim of cure to me, with the added kick of equating autism with a fatal disease.
How about Dr Lovaas himself? From Lovaas and Smith (1989):
Intensive behavioral interventions may act to reverse whatever neurological difficulties are involved in autistic children's problems. If so, they may come close to providing a "cure" for the problems.
This is a speculative and qualified statement, and it reflects the behaviour analytic view of autism as a series of behavioural "problems". But if Drs Lovaas and Smith had not intended to claim to some degree that ABA-based intensive interventions may "cure" autism, they would have used a different word.
In a similar context, Dr Lovaas also used the word "cure" in 1974, in making speculative claims about an apparently successful early ABA-based intensive intervention. From Rekers, Lovaas, and Low (1974):
Only followup data will allow us to claim a cure for (or prevention of) the severe adult sexual pathologies of transvestism and transsexualism or some forms of homosexuality.
So while Dr Lovaas and his "followers" don't routinely claim that ABA-based interventions can "cure" autism or other conditions they have equally assumed to be "severe" pathologies, it's inaccurate to state that no claims of "cure" have been made at all.
Auton et al. v. AGBC, 2000 BCSC 1142 (CanLII)
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.
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.
Thursday, November 02, 2006
Here's Simon Baron-Cohen:
It is known that children with autism have superior detection of detailed features in visual search tasks (O'Riordan, Plaisted, Driver, & Baron-Cohen, 2001). This can be seen as a talent, rather than a deficit. Experimentalists such as Plaisted at times see this as "enhanced discrimination" (Plaisted, O'Riordan, & Baron-Cohen, 1998) and at other times as "reduced generalization" (Plaisted, 2001). This illustrates that the very same data can be seen from opposite perspectives. "Superior discrimination of difference" highlights that although perception is abnormal in autism, it may not be arising because of damage or disorder in a perceptual mechanism, but because that mechanism is more finely tuned, functioning at a higher level. "Reduced discrimination of generality" may be a consequence of superior dicrimination of difference, but why highlight it? If the person's attentional system is tuned to notice how things differ, then of course they are going to detect differences more than controls do, and report similarity less than controls do. Focussing on the "reduced discrimination of similarity" gives the impression that the person has a deficit in a mechanism that detects similarity, essentially putting a negative spin on what is really a talent. It's like saying that someone who can tell you the names of 20 types of beetle has a deficit in saying they are all the same. To you and me they are all just beetles. To the careful observer, they are each unique.
From: Baron-Cohen, S. (2005). Enhanced attention to detail and hyper-systemizing in autism. Commentary on Milne, E., Swettenham, J., & Campbell, R. Motion perception in autism: a review. Current Psychology of Cognition, 23, 59-64.
O'Riordan, M.A., Plaisted, K.C., & Baron-Cohen, S. (1998). Enhanced discrimination of novel, highly-similar stimuli by adults with autism during a perceptual learning task. Journal of Child Psychology and Psychiatry, 39, 765-775.
O’Riordan, M. A., Plaisted, K. C., Driver, J., & Baron-Cohen, S. (2001). Superior visual search in autism. Journal of Experimental Psychology: Human Perception & Performance, 27, 719-730.
Plaisted, K. C. (2001). Reduced generalisation : An alternative to weak central coherence. In J. A. Burack, T. Charman, N. Yirmiya, & P. R. Zelazo (Eds), The development of autism: Perspectives from theory and research (pp. 149-169). Mahwah, NJ: Lawrence Erlbaum Associates.
Wednesday, November 01, 2006
Then there's the 2005 Wynberg trial decision, arising from an Ontario battle over the funding of ABA/IBI. This decision includes numerous descriptions of ABA-based autism interventions, all from recognized experts. Here's one expert description of ABA:
Dr. Luce described it as a methodology which incorporated the “systematic introduction of educational strategies to determine whether that educational strategy is effective or not”.
Here's another one:
Dr. Newman described it as a “general theory of education and learning”.
And another one:
Dr. Leaf referred to ABA as a “teaching strategy” and a “teaching methodology” and said that it was “not a treatment modality, it’s an instructional framework”
And another one:
Dr. Handleman, an expert in education, said that ABA was an education for children with autism, not a treatment.
Another expert witness, George Niemann, was asked whether ABA was education or treatment. He responded:
...we employ a non-medical model, Your Honour...
This looks like a conspiracy to deprive autistic children of "medically necessary" autism treatment.
Or maybe not. Stephen Luce, Bobby Newman, Ron Leaf, and Jan Handleman are all famous behaviour analysts. Dr Luce co-edited one of the major ABA manuals with Catherine Maurice and Gina Green. Dr Newman was but recently the President of the Association for Science in Autism Treatment. Ron Leaf is a big international ABA service provider and co-wrote another of the major ABA manuals. Jan Handleman is well known as an important behaviour analyst. And all these expert behaviour analysts were testifying for the ABA parents in Wynberg. I don't know who George Neimann is, but he too was testifying as an expert for the plaintiffs--for the ABA parents.
In other words, the experts quoted above were all on the side of Canada's autism advocates. Their testimony about the nature of ABA-based autism interventions was indistintuishable from the testimony of the Ontario government side experts in this regard. E.g.,
Dr. Dunlap described ABA as “the systematic application of procedures that are based on learning theory and principles of operant learning to produce change of importance in human behaviour”.
Dr. Siegel and Dr. Perry also agreed that IBI is not considered a medical intervention but a psychological or educational intervention.
It was unanimous: ABA is an educational methodology. It is not medical, or medical treatment, or "medically necessary" treatment. All the experts--most of whom are respected behaviour analysts--agreed. The trial judge in Wynberg, in her decision, refers to "early in the trial", when "medically necessary" ABA was "still a live issue". By the end of the trial, this issue had long been declared dead. The Wynberg trial decision, unlike the Auton SCC decision, denies that ABA is "medically necessary" autism treatment.
And Canada's autism advocates were ... delighted. They overwhelmingly celebrated the Wynberg trial decision and organized major demonstrations in Ontario to protest against its appeal.
In a victory for the Ontario government, the Wynberg trial decision was recently overturned on appeal, but this may in turn be appealed to the Supreme Court of Canada. Would Canada's autism advocates celebrate if the SCC overturned the Wynberg appeal decision? This could restore the Wynberg trial decision. But if the SCC were to restore this decision, the SCC would be denying that ABA is "medically necessary" autism treatment, something they failed to do in Auton.
Auton (Guardian ad litem of) v. British Columbia (Attorney General), 2004 SCC 78
Leaf, R. & McEachin, J. (1999). A work in progress: Behavior management strategies and a curriculum for intensive behavioral treatment of autism. New York: DRL Books.
Maurice, C., Green, G., & Luce, S.C. (Eds.)(1996). Behavioral intervention for young children with autism. Austin, TX: Pro-Ed.
Wynberg v. Ontario, 2005 CanLII 8749 (ON S.C.)