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(from a letter to Doug Mitchell, February 9, 2004)
About the poll, and some of its uses:
The poll was conducted and reported free of charge to FEAT BC. This organization was considered to be a good cause by Ipsos-Reid, according to John Wright (Senior Vice President, Ipsos-Reid, Public Affairs). Mr Wright confirmed that the "facts" stated in the poll questions were accepted as given by FEAT BC and were not in any way verified.
Here is the poll information (the pdf contains the complete poll and results):
According to Justin Himmelright (ABA parent), on the morning of its release, "that poll was send out to every federal MP, every BC MLA and every Ontario MPP. It was also sent to every newspaper in Ontario and BC." (from the FEAT BC public discussion forum).
Here is an MP's press release: http://www.scottreid.ca/12-20-2004.html
The poll in a brief to a Senate Committee: http://www.canadaautism.com/Portals/1/FEAT%20ON%20sub.%20Mental%20Health%20in%20Canada.pdf
The poll in a parent press release: http://www.canadaautism.com/Default.aspx?tabid=55&mid=402&ctl=ViewEntry&EntryID=45
The poll in a news story http://www.oacrs.com/News/2005/January/Jan12.htm
There was a news story in the Vancouver Sun, re the poll, on Dec. 21, 2004, under the headline "Canadians support autism treatment". The full text is:
"An Ipsos-Reid survey conducted for Families for Early Autism Treatment of British Columbia finds 89 per cent of Canadian families surveyed believe provincial health-care programs should cover the cost of intensive behavioural treatment, which has been proven to effectively treat children who suffer from autism. B.C. was slightly behind the Canadian average at 85 per cent."The article finishes with numbers from each province.
The end of a statement read by Peter Stoffer, MP, in a press conference held in (and broadcast from) the Parliament buildings:
"In a recent public opinion poll conducted in December 2004 by IPSOS-REID, a full 84% of Canadians stated that Canada's medicare program should include Intensive Behavioural Treatment for children suffering from autism. The Canadian people want it and the autistic children need it. In a wealthy and responsible country like Canada children with autism deserve no less."What the poll says
1. The first question: "Do you believe that children who suffer from autism should be covered by their provincial healthcare program to receive an Intensive Behavioural Treatment, which has scientifically been proven, to effectively treat autism?"
Comments: Children are said to suffer, and what they suffer from is said to be autism. It is then said that there is a "scientifically proven" treatment to "effectively" treat the autism from which these children suffer. This treatment is put under the responsibility of the healthcare program, which would indicate that there are health/medical issues (versus, for example, education issues) involved.
The message is that there are children who are ill or unhealthy (and suffering), and need healthcare. The healthcare is available, in the form of a scientifically proven and effective treatment. Do you then want this to be covered?
2. The second question is prefaced by this statement: "Now, as you may know, there was a recent decision by The Supreme Court which indicated that provinces are not legally responsible for covering the Intensive Behavioural Treatment for children with autism. This means that while your province is not legally bound under the Canada Health Act to provide funding for this service they still can choose to do so out of their health budget. It is estimated that The Intensive Behavioural Treatment, a scientifically proven effective treatment for children with autism, which costs a family approximately $60,000 a year would save taxpayers 1-2 million dollars over the lifetime of an autistic child." Then the question is "whether or not they think that while not obligated to cover this healthcare cost, their province should do so anyways."
Comments: The preface states as fact that there is a scientifically proven and effective treatment for a health problem in children which can save taxpayers $1-2million/child. Then the question is whether this treatment should be funded.
There are many messages. One is that without this one named treatment, all autistics are $1-2million burdens on taxpayers. Taxpayers can save this amount of money if they will agree to fund treatment for all autistic children. The question in effect is: "Autistics are a burden on society. One specific scientifically proven, effective treatment can alleviate this burden. Do you want this burden alleviated?"
Factual and other foundations
1. For question one: even in the current atmosphere of fear, dread, etc, of autism, many autistics, including autistic children, strongly and publicly dispute that we "suffer" from autism, and find this description offensive. This is consistent with other developmental disability areas. For example, the Canadian Down Syndrome Society says, in a position statement, that DS is not a "disease, defect, disorder, or medical condition"; DS does not in itself require "treatment or prevention"; and that it is inappropriate and offensive to say a person "suffers from" or "is afflicted with" DS.
The treatment named in the poll cannot be described as "scientifically proven". There is significant controversy in the scientific community about this "treatment". There is a recent study showing no effect of kind or amount of treatment, including ABA/IBI (the treatment in the poll), in the years when ABA/IBI is advertised as being most "effective" (Eaves & Ho, 2004, a study done in Canada). The original study supporting this treatment (Lovaas, 1987, and its follow-up, McEachin, Smith & Lovaas, 1993) has never been replicated. Catherine Lord, a major autism researcher, has recently pointed this out, and called Lovaas' results "an anomaly". Indeed, the "treatment", most of which happened in the early to mid 1970's in this study, was scientifically shown to have as its "effective" component the use of aversives, or physical punishment (hitting the child and yelling "N0!") (see Lovaas 1987; Lovaas, Newsom & Hickman, 1987; and Epstein, Taubman & Lovaas, 1985). Aversives became illegal in many American states throughout the 1990s and are now considered unacceptable in routine early ABA/IBI.
Subsequent studies without aversives have had much poorer results (e.g., Smith, Groen & Wynn, 2000), even when conducted in the same university by researchers who spent years working with Dr Lovaas. The "effectiveness" problems (which could not easily be summarized in a large book, much less a small paragraph) are compounded by even more serious ethical concerns. These concerns arise for many reasons, including that the treatment assumes that autistic abilities and characteristics (including autistic learning and intelligence; and strengths well documented in cognitive studies) are useless and worthless. These essential abilities and characteristics are therefore extinguished.
Further to the above, the term "effective" remains undefined. Effective for what? Effective has so far been assumed to mean "effective in making an autistic resemble a non-autistic". The problem is that "effective" does not always mean "good". There are "effective" treatments for left-handedness. And Dr Lovaas, at the same time as his autism work, also devised an apparently "effective" ABA/IBI for children "at risk" of non-heterosexual development. The goal of this treatment included "preventing" or "curing" homosexuality and, like in Dr Lovaas' autism work, producing a child "indistinguishable" from his peers (Rekers & Lovaas, 1974; Rekers, Lovaas & Low, 1974; Rekers et al, 1977). This "treatment" was reported to be "effective" in the science, though the long-term outcomes into adulthood were rather more complicated and disturbing (Green, 1987).
2. For question two: There is no factual foundation for the $1-2million figure. In published (Jacobson, Mulick & Green, 1998) and unpublished (Hildebrand, 1999; this was commissioned for FEAT BC) cost-benefit analyses of ABA/IBI, it is assumed that no untreated autistics ever contribute to society in any way, and that every one of us is a complete burden.
There is a great deal of evidence contradicting this assumption, including a study done in Canada (Szatmari et al, 1989) with autistics with IQ>65 (Dr Lovaas' "best outcomes" had an average IQ of just under 70 at intake; Lovaas & Smith, 1988), born before 1970. Of the 16 autistics followed-up (ages 17-34), seven had university degrees (one was an MBA), and one was a community college graduate. Half were completely independent; six required minimal assistance (I would fall into this category); most were working or were students; none was institutionalized. In contrast, FEAT BC has promised, in court and in the media, that 90% of autistics (at least) across the spectrum who do not get early ABA/IBI are institutionalized. Only one autistic in this study, the youngest, was said to require "constant" supervision. None had the treatment demanded in the poll (which was not available at the time). This is within the specific diagnosis of autism--versus the autistic spectrum, to which the poll would refer, where, e.g., 100% of those with an Asperger's diagnosis, as well as 93% of those with a PDD-NOS diagnosis (Chakrabarti & Fombonne, 2001), will have IQ>70. The majority with the specific diagnosis of autism also have an IQ>70 (e.g., the most recent cohort in Kielinen et al, 2000, born in the early 1990s, is 75% IQ>70).
While the above shows only a few of the problems with the assumption that autistics are universally a burden, the further message in the poll is that this assumed burden derives entirely from the "fact" that these children "suffer" from autism, and that treating autism "effectively" is the only solution.
This precludes autistics from "suffering" from factors which have universally produced suffering and poor outcomes in identifiable minority groups. These factors include intolerance, discrimination, bullying, harassment, ostracism, denigration, etc, and they produce suffering and poor outcomes regardless of the abilities of those belonging to the targeted group. Poor outcomes also inevitably result when groups are barred from the entire public discourse about themselves, are unable to influence in any way decisions made about themselves and their future, and are, in their absence from this discourse and these decision-making processes, infantilized and denigrated by those deemed qualified to argue over what is good for them.
In addition, there are no published adult outcomes of autistics who have undergone ABA/IBI programs, even though Dr Lovaas' "best outcomes" are in their early to late thirties now (Shea, 2004). There is no follow-up study for older children, except for the one follow-up of Dr Lovaas' aversive-dependent treatment, a treatment no longer in use. A recent article in the New York Times shows "successful" children from ABA programs being unable to survive in regular schools, and major figures in ABA/IBI like Sandra Harris and Bridget Taylor significantly revising their claims for producing "mainstreamed" children requiring no further services. In fact, even more (and more expensive) interventions seem endlessly to be necessary for most children who start with early ABA/IBI. In Canada, parents are now demanding at least 10 years of ABA/IBI (and many are demanding that speech therapy and other specialized services be provided concurrently); others are demanding it without limit for all ages. None of this is factored into the cost-benefit analyses used by FEAT BC, which assume three years of ABA/IBI with no other services necessary concurrently or afterwards.
Who can speak for us?
FEAT BC is a group of non-autistic people. They do not include autistics in their decision-making processes, and indeed, as the petitioners in Auton, they vigorously opposed the presence of even one autistic in the Supreme Court case described in the poll.
I believe there are many reasons to be concerned about the FEAT BC poll. This poll has widely been reported already, including being broadcast from a press conference in the parliament buildings. It is vigorously promoted and deployed as a lobbying tool. This is likely to continue and escalate.
The widespread dissemination of the "fact" that autistic people are, each and every one of us, inherently a burden on Canadian taxpayers, because we are autistic, is harmful to us. So is the information, reported as fact in this poll, that we "suffer" from autism. Spreading the information that there is a "scientifically proven" "effective" treatment which can in effect get rid of this autism problem (from which children suffer) also inevitably spreads information about the vast majority of autistics who have not had this treatment, never mind those many who fail in it.
There are 48,000 autistic children in Canada (ages 0-19). Many of the older children (and also many of the younger children) will not have had ABA/IBI. The Ipsos-Reid poll defines all these children as burdens on society. Further, there are 144,000 autistic adults in Canada. It is doubtful more than a handful of us have had ABA/IBI, so we too are all defined as burdens.
Most of us are out and around, contrary to FEAT BC's position that untreated autistics are almost all institutionalized. We have to find jobs and apartments, and most of us can't pass for normal. We have to explain to people that we are autistic. We are now having to explain that we have not had treatment. We universally face the assumption that, because we are untreated, we are write-offs, and this has many serious, severe, complicated ramifications. I've lived many of these myself.
There are many more consequences rippling out from the widespread use, or misuse, of the Ipsos-Reid poll. As with my description of some of the problems with the factual foundations and implications of this poll, I am only providing a brief, necessarily sketchy, summary.
I will only add that I did ask Mr Wright if he would publicize the fact that Ipsos-Reid did not in any way verify the information FEAT BC provided for this poll. He refused to consider this.
While I have no trouble with a wide latitude being permitted in polling, and in questions appropriate for polling, and in the presentations of these questions, I believe there may be some limits. For example, one group should not be able to spread information which will certainly be harmful to another group. Autistics have been harmed by the Ipsos-Reid poll, and will continue to be.
Identifiable groups who are characterized as burdens do not do well in society. Disseminating the premise that those belonging to such a group are a significant burden, and then promising this burden can be alleviated by applying treatment designed to make members of this group "indistinguishable" from those welcome and valued in society is also problematic. In Canada, the same premise and promise were applied to aboriginal people, by non-aboriginal people, and the outcome is still being paid for in genuine human suffering as well as in banal monetary terms.
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