Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue 11 - Evidence - November 22 meeting
OTTAWA, Wednesday, November 22, 2006
The Standing Senate Committee on Social Affairs, Science and Technology met this day at 4:16 p.m. to consider the inquiry on the issue of funding for the treatment of autism.
Senator Art Eggleton (Chairman) in the chair.
[English]
The Chairman: We will continue with our examination of the issues with respect to autism. I want to point out that at a previous meeting we heard from Mary Law, and she has now given us a copy of her presentation. You have that in front of you. We will also receive copies of the statement that the Minister of Health, Tony Clement, made yesterday with respect to the issue.
Today, for the first segment of our meeting we have Michelle Dawson, who has appeared before this committee previously during its study for the Out of the Shadows at Last report. Michelle Dawson is autistic. She is also an autism researcher and an autism rights activist who is best known for writing a paper challenging the ethical and scientific foundation of applied behavioural analysis, ABA. She is here to make a presentation. Welcome. We have up to half an hour for this segment. That time covers whatever comments Ms. Dawson wants to make and then any questions and answers or dialogue. Ms. Dawson, the floor is yours.
Michelle Dawson, as an individual: Thank you very much. Apart from what has been said already, as a researcher I work with two different groups, one is Laurent Mottron's group at the University of Montreal — you will probably meet him later.
The other group is Morton Ann Gernsbacher's lab in Wisconsin. Dr. Gernsbacher is a well-respected experimental psychologist and she is also the president of the Association for Psychological Science this year.
What I will do first is read the words of two other autistic people. Unfortunately, I could not appear with them, so I will bring you their words. I have the great privilege of knowing these two autistic people and they have both given me permission to give you their words.
What these two autistics have in common is that they both have great difficulty producing typical speech. One of them has no functional speech, and the other struggles mightily to produce speech. For these and some other reasons, these two autistic people have attracted labels such as "nonverbal," "profoundly retarded," "low functioning" and so on. These kinds of labels tend to result in people assuming that people like this must want and need certain things. They will speak for themselves.
The first one is Drew Goldsmith. He is 10 years old. He was diagnosed autistic when he was 23 months and, at that time, was untestable in any of the popular child IQ tests and, again, therefore attracted harsh diagnoses. He was asked to answer several questions on a panel at an Autism Society meeting in Wisconsin. I will read you a few of the questions and answers.
Question: How did you find out you were on the autism spectrum? When did you find out? Was this knowledge helpful or upsetting?
Answer: I discovered that I was autistic when I was two years old and I was enrolling in preschool. My mother offered to train the teachers about autism. My wistful dad didn't think I was autistic but my mother did. The preschool teachers assumed that I was also retarded, but I understood everything they asked me to do. I just wasn't able to perform to command. Was this knowledge helpful or upsetting? It was depressing originally, until I discovered the power of my mother's utter support and her passion for advocacy.
I should add at this point that these answers are given in text because both these people communicate through text, as many autistic people do.
Question: Do "normal" people sometimes scare you?
Answer: No, normal people don't trouble me, but people who wish that I was normal, that is, people who see me as only a broken normal person rather than an intact autistic person — do hurt me.
Question: Describe one or two things that people can do or have done that helps you.
Answer: They have utter respect for diversity and they understand that diversity leads a tattered life when not wedded to tolerance.
Question: Do you think it would be a good thing if research found a cure for autism and Aspergers?
Answer: The road to Hades is paved with good intentions.
Question: Would you want to be cured? Why or why not?
Answer: I would want to be cured of bigotry before being cured of autism.
This 10-year-old boy who was diagnosed as autistic and profoundly retarded at 23 months is in high school, and he is a much better writer and much clearer thinker than I am.
The second autistic person is Amanda Baggs, who is in her mid-20s. She also communicates via keyboard. She started making videos because people tended to disbelieve that people like her actually exist. Like many other autistics, myself included, she has lived the consequences of the widely promoted view that autistics naturally belong in institutions.
This transcript is of a video she made in response to an exchange of information between two groups, one of which is Autism Speaks — and you will hear from their Canadian branch tomorrow, I believe. The other group claims to represent some autistic people. This is her response:
I am a non-speaking autistic woman. While I do not agree with functioning labels, I have been labelled low-functioning in the not-too-distant past and I am considered severely disabled. People who look at me without seeing me type often think that there is nobody inside me. I have many of the difficulties described in Alison Tepper Singer's article about her daughter, and more that she did not describe.
She is referring to an important Autism Speaks official who is featured in a widely distributed video that was promoted in The Globe and Mail yesterday. Amanda Baggs continues:
It is wrong to say that your own child has no skills. It is wrong to go on a national video and say you have considered killing your autistic child. My parents faced worse hardships with less privilege and never once thought of killing me. It is wrong to condescendingly assume that autistic self-advocates have never heard of those of us labelled low-functioning, and that somehow the so-called low-functioning among us have no skills and need a cure, and that all you needed to do was say we exist and then everyone would understand what you want to do to us.
Our viewpoint was not represented in this "exchange of ideas".... All the two of you have done is repeat caricatures: The autistic child happy in a world of her own versus the autistic child needing to be cured, high-functioning versus low-functioning, Aspergers versus autism, able versus incapable. You have equated differences in the way we function with differences in the amount of rights we deserve. These things are not how we live, and you have avoided the substantial issues, including the fact that it is not only those labelled high-functioning who oppose cure.
Your articles promote misunderstanding, not understanding. Both of you have essentially told the world that I and others like me do not exist. I am here to tell you and rest of the world that we do.
I write a lot about autism advocacy. Autism advocacy is the widespread effort to make the world as free of autism, that is of autistic people, as possible. Autism advocacy is not about helping autistic people succeed in society as autistic people, but about removing autistic traits and abilities from individuals and society to the greatest extent possible.
In Canada, autism advocacy is encoded in our jurisprudence and is enforced by public policy. The ideal promoted by our government — and this is on the brand new Health Canada site that went up yesterday — and by all the major federal and provincial political parties, is that autism should be prevented. That is, the goal of our leaders is a Canada where all autistic traits and abilities have been eradicated and where there are no autistic people at all.
There is a contrasting science- and ethics-based view of autism, and I will express it through an abstract from a lecture given recently by Dr. Mottron in Wisconsin. I will read from this lecture.
The inventory of autistic strengths and information processing has increased considerably since scientists began considering them as an object of interest. Most of these assets were traditionally associated with low-level cognitive operations like rote memory skills or manipulation of visual spatial material.
They were also considered as by-products of cognitive deficits. However, 15 years of investigations from our group and others indicate that autistic strengths may instead reveal an overall enhanced perceptual functioning, embedded in a profound difference in information analysis. Moreover, these strengths involve higher order operations, encompassing the classic definition of intelligence and therefore demonstrating another kind of intelligence — an autistic intelligence.
Nomocentrism —
— and the simplest way to explain it is the study of autistic people as defective, non-autistic people —
— has intrinsic methodological and ethical limitations. We now consider that research in, and recognition of autistic neurobiological and cognitive differences should not lead to rejection, but to a friendly recognition that different brains are complementary in advancing different aspects of knowledge.
In this contrasting view, autistics should receive the assistance, accommodation, acceptance and respect we need to succeed in society as autistic people. While these contrasting views are often posed as matters of opinion, both science and ethics exist to provide a foundation for making decisions about how human beings should be treated.
Also, both science and ethics provide ways to verify information. My own view, which is not exactly welcome or acceptable in Canada at the moment, is that autistics deserve high standards of science, ethics and advocacy.
I will go through a few things that I have found. When you read a lot of research, you find things that really stay with you. Every eight or 10 years, some of the major researchers in the field of autism come out in a peer-reviewed journal with a review of the literature as a whole. This review is ambitious because, contrary to what has been said, there is a lot of research in the field of autism. The last review of the literature was in 2004. Here is a quote from that review in the area of autism interventions and treatment, which is what you are concerned about here. They write:
However, the past five years have yielded both a "practical consensus"...and a formal consensus from the National Academy of Science in the USA (NRC, 2001) that no single approach is the best for all individuals or even across time for the same individual with ASD.
This is after 63 years of autism research. Really, there is still no good idea, whatever the goals of an intervention actually are, of how to achieve this goal for any given individual.
I will refer to the actual report from the National Academy of Science. This report is in book form. It is an enormous survey of educational and psychosocial interventions for children with autism. Apart from noticing no one intervention or approach is suitable for all individuals, they also point out that outcome research has studied the effectiveness of the programs, not the appropriateness of various goals. In fact, this question is what I have looked at. That particular question is an ethical question. That question is not saying, "Can we do this?" It is saying, "Should we do this? Is this a good idea?" What is so striking is that in autism, nobody has asked that question. Certainly, nobody has asked it officially in the science since 2001 when these major researchers concluded that this question had not been asked. They also point out that it is a much harder question to answer than the question of, "Is this effective?"
This is important to note because research that we lack entirely, certainly in the area of treatment and intervention, the areas that this committee has been most interested in, is the area of applied-behaviour-analysis-based early interventions. Even though there is 45 years of research in this field starting in 1961 and there are apparently hundreds or possibly thousands of studies published in this area, we do not have one single peer-reviewed adult outcome study of an early ABA-based intervention.
This lack is something to remember at the political level. It has been said over and over again, now in the House of Commons and on the floor of the Senate, that we all know that these early ABA-based interventions save money. We know that if we pay now, we will pay less later. We do not know that. That is not based on any peer-reviewed published data about the adult outcomes of these interventions. Again, this is after 45 years of research in this field. The children who went through the UCLA program and whose results were reported in 1987 are pushing 40 now, but we do not know what happened to them as adults because that has never been reported anywhere in the science.
Also, on the subject of these interventions, I am concerned about standards of science as well as standards of ethics. Another thing that is striking is the quality of this research as opposed to its quantity. In those 45 years of research into ABA-based interventions and these hundreds and possibly thousands of studies, there is a total of one randomized controlled trial of this kind of intervention. By any standards, that one randomized controlled trial, and that is the standard of science that would be applied to the rest of you in this room, was a failure. That was reported in the year 2000. There was one randomized controlled trial, and the results were not good.
Including that study, there is a total of eight controlled trials of an intensive early intervention. There is also one study of a non-intensive, early intervention. If we look for a multi-year prospective — which means that we gather data as we go as opposed to looking at charts and then reporting data about children whose outcome we already know, which are retrospective studies — in all this history, we have three prospective, multi-year controlled trials. One of them, the one that has gotten the most attention and so on, is the Lovaas study in 1987, with a follow-up in 1993. This study is the only one that reports a large minority of good outcomes, but that study, according to its author and its design, was dependent on the use of physical punishment, and that practice is not acceptable anymore.
One of the other better designed controlled trials, which was published in 1993, now has a presented follow-up. It was presented this year at the conference of the Association for Behavior Analysis. Researchers did not obtain as good results as in the Lovaas study, but they did have a few children — four of them — who did well, but the researchers reported that this result was not maintained on follow-up 10 years later.
A third controlled trial was published this year, and it illustrates the problem of not having randomized assignment to groups. Researchers end up with groups that are not matched. In this case, about 29 per cent of the children in their experimental group did well, but their control group also did better than they expected. They found that when they controlled for all the variables that were not matched between the groups, the significance of their results in the outcome measures that they chose vanished. They were left with only one significant result, which was the difference between classroom placements for the two groups: This was no longer tied to the achievement of the children.
I will add one more thing. It is hard to imagine having enough money, resources and so on to do what is being suggested should be done, which is, in effect, to rid Canadian society of autistic traits and abilities. We are reaching the point where that situation will be demanded, and why will it be demanded? It is because there are such effective advocates spreading the word that these traits and abilities signal disaster, and that at the first sign of these traits and abilities, what we call these red flags early in development, panic and despair sets in because these autism advocates say these children are doomed: If something is not done right now, that is it. I do not think that position is science-based or ethics-based. It is the one you have.
By concentrating on autism treatment, and treatment necessarily has the goal of lessening the traits and attempting to produce as typical a person as possible, you pathologize autistic traits and abilities.
You make them unwanted in society. That has an effect on all kinds of people besides children, including autistic people trying to seek employment or apartments, or trying to maintain their autonomy and stay safe in society. Our traits and abilities have been pathologized because we have had such effective advocacy and this pathologizing has not been subject to critical thinking at any level. It is hard to imagine enough resources to rid society of all these traits and abilities until people are satisfied that there is no more autism. I will leave you with that thought, and whatever questions you may have.
The Chairman: Thank you very much, Ms. Dawson.
Senator Callbeck: Ms. Dawson, you spoke about labels and people with autism sometimes being labelled as having no skills and non-functioning. What are your views on a public-awareness campaign that would help Canadians have more understanding and help to eliminate these labels?
Ms. Dawson: I think that some labels can be used accurately. In the science, for instance, we use high- and low-functioning in the strict, narrow sense of a snapshot IQ on a specific instrument at a specific time. Those labels are much abused, because "at a specific time" might not necessarily mean much for a two-year-old child, and so on.
As far as a public campaign goes and so on, there are two problems. We have a lack of accurate information. By "accurate information," I mean things that can be traced to primary sources in the science. What we have now is information from "fact" sheets that have no resemblance to what is published in the science. We have information from legal decisions where these statistics, and so on, cannot be traced to any primary source in the science. We have information from websites, and so on. That information is the standard applied to autistic people. Again, that would be fine if it were all verified by referring to primary sources, but that does not happen.
There is a lot of inaccurate information out there, as well as a lack of accurate information. It would be great to have accurate information; this is what I testified last time, for anybody who was here. I underlined that we do not have accurate information. Instead, a lot of people are spreading panic, fear and dread of autism. We now have Health Canada saying that we should be prevented altogether. This information is not helpful: saying that "hopefully" autism can be prevented. They are telling people that in Canadian society, we do not want people like that.
I think we can do a whole lot better than that to help autistic people to be successful. There is the provision of inaccurate information in many areas, for example, epidemiology and the false epidemic problem that I hope will be spoken about later. Providing accurate information is absolutely crucial, but you are working against government-funded organizations that are providing extremely false information.
I agree with you; we need accurate information.
Senator Callbeck: Are you aware of the Canadian Autism Intervention Research Network that runs a public awareness campaign?
Ms. Dawson: Yes; I am aware of their group. When I phoned them, they told me that I sounded too intelligent to be autistic. This is what I was told by their administrator. I was upset because they do not include autistics in their conferences. I think they should do so. They also do not include autistic people in their governance. I question also some of the information they have on their website. They do not identify autistic people as stakeholders, and so on. They would be a good platform for spreading accurate information. They do attempt to show what critical thinking looks like on their website, but I would challenge many of the things that they have up there.
I am not sure what to say about the network. I have criticized them as much as I can. I think they should include autistic people. Sorry, but I am not too organized in answering questions.
The Chairman: I need to move on, because we are running out of time.
Senator Munson: Ms. Dawson, thank you for being here. You talked about government organizations, false information and the whole campaign you refer to out there as fear and dread. However, we have heard from other witnesses, we have listened to families and we have heard people talk about the necessity of applied behavioural analysis/intensive behavioural intervention therapy. What are you telling us? You talk about the science. None of us here are scientists, but we are trying to reach some sort of conclusion of helping families who have autistic children. That help ranges from hopefully leadership with a national strategy, working with the provinces, and so on.
As you know, more and more people are being diagnosed as autistic.
Ms. Dawson: I am not sure what the question is.
Senator Munson: The question is this. From our perspective, when we hear from thousands of families and people with autistic children, they hope that somewhere along the way individual treatments do work from their perspective and that there should be a role for governments in dealing with these families.
Ms. Dawson: You have to look at each family individually. One family can express despair and they are terrified about the child's future. They will need to sell their house, and so on. However, then you look at another family where the parent says, "I am fortunate to have a child like this." You would assume that there is a vast difference between the children. That is not true. Families react differently to children who have the same kinds of characteristics. Possibly, this reaction has to do with the kind of information that the families are given. If the families are told that their child is doomed, and so on, of course they will be desperate. They are given utterly false information, including the child does not communicate, the child cannot learn unless she is in an ABA program, and so on. Giving information like this tends to produce certain results. If you tell parents their child cannot communicate or cannot learn, then they will be frantic about that child until they get whatever treatment is said will change this. Again, it depends what kind of information the families have.
If you have heard from thousands of parents, it shows the effectiveness of autism advocacy. Of course, they are desperate. Who would not be when you have people saying in The Globe and Mail that your child will live in an institution, in restraints and will have their teeth pulled, and so on. There is no scientific basis for that, or for the famous 90 per cent of us who are supposed to be in an institution. You cannot trace that statistic to a primary science in any era much less the current one. You have people out there who are utterly convincing. Yet nobody does any critical thinking about this. You now have this "fact" in the jurisprudence and there is no getting rid of it. You have it in Hansard, and so on. Does it have anything to do with science? No it does not.
Another thing you are missing is that maybe these parents would be less desperate if they were aware of people like the ones whose words I read because those are the autistic people that supposedly everyone is desperate about. They are the ones who have attracted these harsh labels. You heard their words. People tend to dismiss the existence of people like them. Also, there is no presence of older autistics, and so on, in society so that people can look at them and say, "Oh, these people grow up." Even if they are highly atypical, they grow up. They have achievements, and so on. Instead, if it is reported that I have certain achievements, and this has happened to me — what achievements I have are because I am autistic, not in spite of it — they say, "If she has achievements, she cannot possibly be autistic."
There is too much wrong with this for me to cover it all in a few minutes. As far as ABA programs go, if we are interested in funding autism research, we should pay attention to it. There is no point in funding the highest quality autism research if it is utterly ignored when it comes time to make decisions about autistic people and instead, the decisions are made on the basis of effective lobbying.
Autism research is funded because that is the way to find out things. You may not find out what you want to find out — and that certainly happens to us. You should apply the standards that you would want to apply to yourself — that the decisions made about you are based on excellent quality research guided by ethical principles, the kind that do tend to protect and benefit non-autistic people — then I think autistic people should profit from that, too, and not have the decisions made about us based on things that are sometimes at the level of an urban myth.
Decisions should be genuinely informed by the science; but I also think that the science, as the National Research Council pointed out, has not been guided by ethics in this area, and that is necessary also.
The Chairman: Because we are running out of time, I ask each senator to ask one brief question.
Ms. Dawson: Ask easy questions, please.
Senator Keon: I find it difficult to be brief, Ms. Dawson. First, I want to compliment you on your objective presentation. You last appeared before us in a different forum. It was not dedicated to autism, and my conversations with you at that time indicated that you felt we were not the right people to address the subject.
However, you talked about science. In my former life, I was a medical scientist. Do you think it will be useful to create a chair for research in autism, and must that chair be coupled with the kind of ethical backup that you talked about?
Ms. Dawson: That is a hard question. We already have some autism research chairs in Canada. There is Susan Bryson, who has a dedicated autism research chair and there is another one at the University of Western Ontario, which has recently started up.
I fully support autism research. There is a lot of it, but I think we need more quality and more direction. Yes, we need ethics. One of the reasons is that this huge bulk of research, which we run into every time we do a literature search, has not necessarily helped autistic people all that much. Some of it has. There is really good research out there. Epidemiology has impressive research in that area, as you will hear. Some areas are pretty good, but other areas need the guidance of ethics.
I will tell you what happened in my field. I work in cognitive science and neuroscience, and I am a harsher critic of that area than I have ever been with ABA. However, the reaction to the criticism has been rather different.
There is this huge inventory of autistic deficits that is truly massive. If you look through the literature, there is practically nothing that has not been proposed as being wrong with us — it is defective, missing or whatever. These are often fundamental human characteristics. We have been said to miss effectively what makes humans human. If we were actually missing all those things, we would be a low form of life.
There is clearly a problem in how the research is framed. We are starting to put forward criticisms of this research, in the way the data are interpreted and so on. It is here where even basic ethical considerations, I think, would make the research more productive and more accurate. It would make unproductive courses of research less likely. They have plagued the autism research — and major researchers have commented on this; we have theories that stick around like tradition and everyone bows down to them. They clog up the research.
We should be able to do a whole lot better than that, but some of this quality has to do with fundamental ethical things. Some of it has to do with the quality of the science itself.
In the research groups where I work, I am a merciless critic of the science in multiple areas. The quality could be a lot better. Again, there is some good quality research, but there are definitely problems with the research.
We need to set up a research chair, not presuming ahead of time that we want to fix autism, we want to cure it or we want to prevent it — not setting a priori goals like that. We have a situation where nobody knows what autism is; we are not at that point of the research yet. At the level of cognitive processes and neurology, we do not know what autism is; but we want to get rid of it, no matter what. We do not care what it is; we want it gone. I do not think that is a recipe for good science or ethics.
Senator Pépin: You said no single approach is good for everyone. In your view, how can the committee recommendation be a recipe for the family with autistic children, while respecting the concern of a highly functional autistic person?
Ms. Dawson: I do not know who you are calling highly functional and on what basis you make that judgment. We tend to be diagnosed a lot over the phone and by the media and so on. That is not how a diagnosis works. I want to make that clear, because it happens all the time.
We are instantly judged by people who never met us when we were a child, and have no idea of the difficulties we face. An uneven profile of abilities is a characteristic of autism. Most people would be absolutely shocked at how I live because there are things I am absolutely appalling at. There are things I am tremendously good at, and the same is true of the autistic people whose views I read out. Would you guess that one of them wears diapers — and, no, this person is not ashamed of this? Would you guess that?
People look at their writing and say they must be too high functioning to understand. Then they see their picture and say this must be an empty shell; this person must be doomed, they must be in an institution. I think people should show more caution in the judgments they make about us.
To answer your question, I was not the one who said that no individual approach works. That was a major consensus in the science. We should have respect for consensus because it is so rare in autism science; it does not happen often.
What do you tell families? You give them information as accurate as you can give them. I cannot say any more than that. You try to point out that if only they had better information, if only they knew that there are good outcomes reported in the science in adults — and remember, we do not have adult outcomes of ABA programs.
We do have successful adults recorded in the science. We should be concerned about what on earth happened to them when they were kids. The people are not interested in successful autistic people because they say we must not really be autistic. I think we should give families accurate information. We point out that it may be unrealistic for a lot of children, according to the science — remember we have this one randomized control trial, which was not a success. I cannot say more, sorry: give them accurate information. That is what they deserve and anything else, I think, is condescending.
Senator Cochrane: Ms. Dawson, yesterday when you called, I was hearing from five different members who have children with autism.
Ms. Dawson: Members of the Senate?
Senator Cochrane: No, they were people from B.C. who were part of a group and were coming to us to tell us their concerns about their children. They wanted some help. One of them is now six years old. He was on ABA treatment for a couple of years. He is completely better.
Ms. Dawson: Better than what?
Senator Cochrane: He is functioning. He is functioning on his own. I have to be careful of my wording. He is doing everything for himself that children can do at six years old, and he does not have these disabilities that he had before he took this ABA treatment. Now, needless to say, she has another child who will always have concerns. This other child is also on ABA, but she says it is working. The other three ladies gave me examples of the children they have, and they told me that ABA is functioning and is an intervention that is working.
Because of your intelligence, your skill and so on, I want you to specify for us what in your opinion are items or interventions that will work, and what are interventions that will not work?
Ms. Dawson: Scientists far better than I have pointed out that we do not know that, and I will not argue with them. They are a lot bigger than I am.
Senator Cochrane: In your experience?
Ms. Dawson: First, I do not think decisions about autistic people should be made on the basis of anecdotes. This is why we have science. Anecdotes have often not worked out well. Parents of children with autism, and this has been noticed from way back, have praised all kinds of interventions. You can have anecdotes for anything — for chelation, for miracle diets and so on. Behaviour analyst Tristan Smith has pointed out that Bruno Bettelheim had glowing testimonials from parents and had a long waiting list.
We should be careful with anecdotes, particularly in autism. We have anecdotes for secretin, which the science absolutely proved did not work. I think we should be cautious with anecdotes. I have used a few because of the ones that have shown up already here, but I do not think that using anecdotes is okay.
One of the great triumphs of autism advocacy is that everyone is totally startled and believes that it some kind of a miracle when an autistic child learns something and progresses, but the science shows, going back to the first study to identify autism as a distinct condition in 1943, that progress is part of the natural course of development in autism. People view autism like a disease, as if it is cancer. People expect these children to get worse, but that is not what the science says. It is an anomaly if these children do not make progress. You should not be surprised when an autistic child makes progress. Again, whatever approach is used will tend to be the one to which the progress is attributed.
I will say briefly that a study out of British Columbia was doing a number of things in working with young children, ages two and a half to five, which are supposedly the critical ages. This study was published in 2004. They were checking a few things such as accuracy of really early diagnosis, but they also tracked what kinds of treatment these children were in over the course of that time. They performed thorough intake and outcome measures. They ended up with about 40 kids. About half of them were in ABA programs and half were not. The scientists found no difference in the outcomes of the two groups: none at all. They found no effect of either kind or amount of treatment, and these treatments in the study are all currently marketed autism treatments. Some of these children did really well. For about a third of them, their IQs went up by more than 25 points. Some of these children did badly. Some of these children stayed about the same. You better believe that the parents of the children who were doing well would be absolutely sure that whatever approach they used was responsible for the child doing well, but these scientists in this particular study showed that this was not the case. There was no effect of either kind or amount of any of these currently marketed treatments, including ABA-based treatments on these children. This research was done in Vancouver.
You have to be careful with anecdotes. They should be respected to a certain degree, because they are important, but you need science to make major decisions that affect a huge group of people in a country before you decide. Deciding on the basis of anecdotes poses serious risk. Again, you can refer to a lot of science. There is science, and I will even quote it, and it is via the study I talked about. Other researchers, Boyd and Connelly, did an ABA study which showed poor results. It is an uncontrolled design, so I have not included it. They noted that "parents were satisfied with their home-ABA programs despite lack of measurable improvement in the children." This observation was reported in the major review of the science that I quoted earlier because it has cropped up three or four times now.
You have to be careful with anecdotes. My plea is, look at the science. Look at it in great detail. I do not know how many studies I have read now, probably several thousand. It is a lot of time and trouble. It is a lot harder than reading fact sheets or legal decisions or whatever, but in my view autistic people deserve that standard of science and ethics.
The Chairman: Ms. Dawson, thank you very much for being here today. You have brought a different perspective from some of the others we have heard, and it is valuable input for us.
Ms. Dawson: Thank you for listening.
The Chairman: Three people have joined us at the table who will make presentations. We must be out of here by 6:15 because another committee meets at that time.
We have three witnesses. First, with the Canadian Autism Intervention Research Network, is Dr. Peter Szatmari from the Faculty of Health Science at McMaster University. His clinical involvement has been primarily with children with autism spectrum disorder. He has worked in the field for 20 years and is involved in developing a pervasive development disorder team at Chedoke Site, McMaster Children's Hospital, a regional diagnostic and treatment program for children with this diagnosis.
Second, there is Dr. Eric Fombonne, professor of psychiatry and epidemiologist. He directs the child psychiatry division at McGill University Health Centre.
Finally, we have Marianne Ofner, a professor of epidemiology at the University of Toronto — a good university in a good city, the Faculty of Medicine, Department of Public Health Science.
Welcome to all three of you. We will start with Dr. Ofner.
Marianne Ofner, Department of Public Health Science, University of Toronto: I want to thank you for inviting me to speak today. I come with a unique perspective. As a university professor in epidemiology, I am also a senior epidemiologist for the Public Health Agency of Canada, and I have two children with autism. I have two little girls, age seven and two and a half, who have both been diagnosed.
It is essential, when any decisions are made with respect to the treatment of all in Canada, that we use evidence-based medical principles. Presently, the only treatment that meets these stringent rating systems are the same rating systems that we use with the public health guidelines. We have rating systems for guidelines. When my daughter was diagnosed, I did a huge literature review of what treatments were available for autism. I put the treatments against the same set of criteria to rank the strength of the evidence to make sure the evidence was valid and reliable. Certain methodologies are used for evidence-based practice.
After reading enormous amounts of literature in doing my review, I was totally convinced that the only thing that was considered scientifically proven was what is called the Lovaas-based intensive ABA therapy, and the paper that indicated 47 per cent of the children lost their diagnosis. Glen Sallows has replicated that study; others have done other studies. I have provided the Senate with a list of the peer-reviewed research articles that support ABA, and there is more than one article.
As both a parent and a health professional, I would consider it immoral and unethical if I did not give my child ABA treatment. What parent would withhold giving their kids antibiotics if they had pneumonia when antibiotics is the treatment for this kind of disease? I could not deny my child this.
I know some professionals do not recommend ABA treatments. When I looked into why someone would not recommend it, I found out that these people generally were not behavioural analysts or research methodologists. They do not conduct research in ABA. They may do research in autism. They may study the genetics of autism and the pharmaceutical treatments of autism, but they are not clinical psychologists whose Ph.D. is in ABA. If you are a clinical psychologist and your Ph.D. is in ABA, you always recommend ABA treatment because you understand what behaviouralism is and how this treatment works. Canada has many Ph.D.-trained clinical psychologists trained in ABA and there are a lot in the United States.
In my opinion, these health care professionals who have expertise in this area should be making recommendations on treatment. Recommendations should not come from people who are not experts in ABA therapy.
I have these two hats: One as an employee and epidemiologist of the Public Health Agency of Canada, PHAC; the other as a mother. The federal government must play a significant role. The development of a national autism strategy is paramount. We must recognize that autism is an epidemic in Canada. We need to put resources through PHAC into a centre of excellence in autism surveillance and research. Autism is more prevalent than AIDS and schizophrenia. We have bureaus of AIDS and of mental health: we have these resources in Health Canada or PHAC right now. However, we do not have resources specifically for autism. We do not know how fast this trend of autism is increasing or what is happening. We need to study these things. To discuss how a disease progresses, we must do surveillance on that disease.
We need to develop national evidence-based guidelines for the treatment of autism. The federal government writes guidelines for effective control practices for AIDS treatment; the federal government can write guidelines for autism treatment. The provinces are not required to follow the guidelines, but when the federal government, as a leader, writes guidelines, then provinces usually follow because the guidelines are an area of expertise. People look upon the federal government as a leader in these areas.
We need to work with provinces to establish a regulatory body for the certification of behavioural analysts, similar to what the Americans have. Behaviour analysts can be board-certified. In Canada we have registered nurses and we have registered speech and language pathologists. We need Canadian or Ontarian, or whatever province you are in, registered behavioural analysts. As for including autism under the umbrella of medicare for payment of treatment, the federal government will not pay for it: The provinces will decide. However, autism is a disorder. It is treatable and it needs to fall under that umbrella.
I brought pictures of my two little girls. I am not sure if it is appropriate to show them. They are very cute. I will pass them around, only because my little one is exceptionally cute.
I was not planning to show this picture, although I did bring it for other people's reasons. This is how my older daughter Nadia, who is 7, used to be sent home from school. Her head was banged up; her eye was blue. This is when she does not have ABA. When she is put into an unfriendly environment, it is like sending someone who cannot walk and making them stand up at school. That is the only way I can describe it. They cannot walk; they will fall.
If you do not have an ABA therapist in the classroom with your child, or wherever the child is, the children will have behaviours because they do not understand what is happening. They need to be given appropriate treatment to function.
When my daughter started receiving ABA, she became a completely different kid. I know this is anecdotal, but I cannot describe for you the difference between my daughter before ABA and after. Knowing the evidence that is out there, and reading it as a pure scientist, no one can deny that these studies have shown significant gains in IQ and in receptive and expressive language. Significant activities of daily living skills are only able to be reached empirically through ABA.
To conclude, thank you for letting me come. I hope this committee will be able to work on this difficult issue.
I want to thank you on behalf of all the children and all the people with autism who are unable to speak for themselves. I know that if I were someone with autism, I was not given ABA and I was never able to speak, I would want someone to come and ask for this treatment.
Dr. Peter Szatmari, Faculty of Health Science, McMaster University, Canadian Autism Intervention Research Network: Senators, I am deeply grateful as a representative of the Canadian Autism Intervention Research Network, CAIRN, to address you today and to highlight certain issues that I think will help you decide whether we should develop a national autism strategy. The Senate deserves a lot of credit for focussing on the plight of children and families affected with this condition. I am proud to be part of this venture. I am sure good will come of it.
I have provided you with a fuller exposition of my brief, as well as some other materials in the portfolio I have handed around.
I wish to make four points today. First, I want to make the argument that autism is a unique medical condition.
Second, I want to make the point that there are major gaps in the provision of evidence-based services across the country.
Third, I want to point out that the solution to this problem is the creation and the dissemination of scientific knowledge.
Fourth, I want to make some suggestions as to how I think the federal government can play a role in this situation.
First, how is autism a unique medical condition? Autism is probably the most common severe condition of childhood. It is certainly the most common severe developmental disability. You will hear from my friend and colleague, Dr. Fombonne, that the prevalence is roughly 1 in 160 children, and it is probably still increasing.
Autism spectrum disorders have probably the worst outcome of any childhood disability. Individuals with autism continue to have some of the difficulties as adults. With the closure of institutions in this country and other support services, these adults are living at home with their aging parents. They are living in group homes that do not understand autism. Many of them are now living on the streets.
Autism causes more stress on the family than any other condition of childhood. The services that these children need are unique. The interventions we have developed for other children with developmental disabilities or mental health problems do not work for children with autism spectrum disorders because the children process information in a unique way, sometimes in a better way than I do: There is no question about that. The point is that the usual interventions we have do not work. We need specialized services for these children.
Finally, it is the most expensive of all conditions of childhood to try to treat and to help. For example, a study from the United States indicates that the annual medical costs for a child with autism spectrum disorder are three times that of a typically developing child. A study from the United Kingdom indicates that the lifetime economic cost is roughly $24 million. If you think of the concept of patient years, which is the number of years that these children will live, times the annual economic cost, the burden of autism on Canadian society is roughly equal to the burden for Alzheimer's disease or dementia. I ask you to consider the services we have for Alzheimer's disease compared to the services we have invested in children with autism spectrum disorders.
My second point is that there are major gaps in services across the country. There is enormous variation in what is funded from Newfoundland, the Maritimes, Ontario, Quebec, the Prairies, to British Columbia. There is also enormous variation in who is qualified to deliver these evidence-based services. Some individuals are qualified and others are not, depending on the funding model that is used.
I do not have to tell you that there is incredible animosity, ill will and confusion about services for children with autism spectrum disorder. I am no expert, but is there any other disorder of childhood that has gone to the Supreme Court for clarification?
We have made a huge investment in young children with autism spectrum disorders. However, have we made a similar kind of investment in older children and adults? I would argue that the services for adults with autism spectrum disorder are paltry and fall far behind what is available in other countries such as the United States and the United Kingdom.
All this variation, all these gaps and all this animosity is simply due to a lack of knowledge.
What did we at CAIRN learn about possible solutions to some of these problems? In the late 1990s and early years of 2000, we brought together parents, clinicians, scientists and policy-makers from all across Canada at a series of workshops. We tried to identify what we know about effective early intervention programs for children with autism, and what we need to know, so that Canada can boast that we have the best, most cost-effective and most efficient form of intervention anywhere in the world.
The first thing we learned is we do not know enough. As Ms. Dawson pointed out, there is only a single randomized control trial of the efficacy of early intensive behavioural intervention. Not many programs in this country have such a large investment based on only a single randomized control trial. It works. However, there is a lot of misinformation.
I would argue that the 40 per cent cure rate that is often quoted is not really consistent with the data. It is not based on the best-quality study that is available. There is no question that some children with autism spectrum disorder need intensive early behavioural invention. It is expensive. However, not everybody needs it. There are other forms of ABA, if we think of that in the broadest sense of the term, that are less expensive, less intensive and can be delivered in a more naturalistic setting, which are effective for those children. Some children will not respond to any form of intensive behavioural intervention no matter how much you give them for how long a period. These children need another form of intervention, and they deserve the right to have that intervention.
The key is that we need to match the type of intervention to the type of child. We simply do not have the knowledge to do that. The scientific evidence for that matching is lacking.
At CAIRN, we also became concerned about the kind of information that Canadians received. We reviewed the websites that were available. We were shocked about the misinformation that is on the worldwide web. There are even websites promoting treatments that harm children, such as chelation therapy, facilitated communication and secretin. The problem is that so many websites are an advertisement for a particular point of view.
Canadians do not have access to an unbiased source of information about autism spectrum disorders, an unbiased source of what causes the disorders and how to treat them. For that reason, we developed a website. We searched the literature every week. We identified the scientific studies that were the most rigorously carried out and that were clinically relevant for families. We translated them into a jargon-free summary and we put them on the web.
The problem is that academic journals are full of jargon, and I have a hard time understanding them, let alone ordinary Canadian families.
This website was incredibly popular. In one year alone, we had 37,000 regular visitors to the site. People were desperate to obtain unbiased information that they could trust. However, we ran out of funding. No one funds this form of knowledge translation. Universities do not fund it, granting agencies do not fund it and hospitals do not fund it. We ran out of money and were no longer able to operate that website.
What role do I think the federal government can play given that this matter is provincial jurisdiction? I have three suggestions. First, take over some of the role that CAIRN has played. Bring together the stakeholders from all across the country: parents, government officials, clinicians and scientists. Let us document the variation and services across the country so we can develop baseline standards. Every province is unique. I agree and understand that. However, every child deserves, as a right, to have at least a baseline fundamental level of evidence-based service.
Second, I think we need more funding for research and research training. Canada has some of the best scientists in the world in the field of autism. There is a whole generation of young scientists bursting with creative and interesting ideas about how to treat autism and what causes it. They want to test out their ideas. The problem is that there is not enough funding.
Canada is falling behind the United States and the United Kingdom when it comes to research funding. It is true that the Canadian Institutes of Health Research, CIHR, has provided $15 million of research money into autism since the year 2000. The United States spends $200 million in one year alone, not $15 million over six years.
We really need centres of excellence, networks where teams of scientists along with stakeholders can work together to address some of these issues. We need Canadian answers, not American ones.
Finally, we need to provide a forum for information. It is excellent to have a website, but that website must be updated on a weekly basis. New information constantly arises, and one cannot leave information on a website that is one or two years old. It must be brought up to date in jargon-free summaries so Canadians can be kept up to date, and ideas based on rumours and innuendo do not become more prevalent.
It is not that expensive to create and disseminate new knowledge. It is all a matter of investing now to save for the future. I do not mean investing only in money. I mean saving suffering, unhappiness and despair.
I have worked with these children and their families for 25 years and have seen moments of despair that are hard to imagine. I have also seen these kids graduate from high school, go out on a date and get their first job. They have brought incredible happiness to themselves, their families and even to me. It is all a function of sharing knowledge, trusting what science can do for us and applying that science to the everyday lives of these children.
Thank you very much for this opportunity. We at CAIRN will continue to advocate for these children and advocate for the role that knowledge can play in improving the quality of life for these children, in levelling the playing field and in reducing the burden of suffering associated with autism spectrum disorders.
Dr. Eric Fombonne, Director of Child Psychiatry, McGill University Health Centre: Honourable senators, I fully concur with Dr. Szatmari's statements. I have prepared handouts that I intend to use in support of my statement today.
I want to concentrate on a few issues dealing first with epidemiology, second with treatment issues and finally with training into autism research programs.
On the first page of the slides, I want to confirm, as an epidemiologist, that the data we have about the prevalence of autism and autism spectrum disorders in the population has changed dramatically. Thirty years ago we thought autism was rare. Recent studies, as you can see on slide three, consistently indicate that the rate of autism is around 60 to 70 per 10,000 children. That makes autism and autism spectrum disorders one of the most frequent and most prevalent childhood disabilities.
It turns out we were lucky to conduct a Canadian-based epidemiological survey within the last few years, and we have provided a copy of this paper. We surveyed a whole school board in the western part of Montreal. We confirmed, based on Canadian data, that the rate of autism is currently 65 per 10,000 children.
If we are conservative in light of recent studies and we set the rate at 60 per 10,000 children, that rate would be equivalent to one child in 160 or 165 who suffer from the condition. Again, based on the most recent studies that are yet unpublished, these estimates are conservative.
On the next page, I have quickly prepared an estimate of the number of Canadian children under age 20 that suffer from autism today based on the 2001 census data, and on the assumption that the rate of autism is 0.6 per cent across the country. This table in slide 7 shows that in Canada as a whole, we can expect that at least 47,000 subjects under age 20 suffer from autism. In fact, because these are conservative estimates based old census data, the number is probably closer to 55,000 today across Canada.
How do we interpret these increased numbers? There has been a lot of discussion as to whether this is an epidemic. We know for certain that the high numbers we currently see reflect to a large extent that we have different criteria, we understand the disorder better, we have defined it in a better way and we are better at identifying studies when conducing epidemiological surveys. All those factors contribute to these increased numbers.
However, we are not entirely sure we can eliminate, in addition to these factors, some kind of environmental factors also contributing to this trend. Therefore, the goal for surveillance in Canada needs to be considered seriously.
In the U.S., the Centres for Disease Control and Prevention, CDC, has set up a monitoring system at five different sites within the past five years. CDC is pursuing this initiative and wants to monitor over time the prevalence of autism. It might be a good idea to embark upon this effort in Canada.
We have known for the past 30 years that the causes of autism are, to a large extent, determined by genetic factors. The items on the next page indicate that in studies conducted on twins, there is a strong inheritability in autism. It is hard to find the genes because multiple genes are involved and the same genes are not involved in different families.
Therefore, there are groups of autism researchers in the world. Canadian groups are excellent at that. We are all zooming in to the genes we have found and homogens that we know harbour some of the genes. It is complex to put our finger on gene study at this point in time, although causative research is headed there. We are at the beginning of this search for genes, long before we can fully understand how this disorder develops in the brain of young children.
Because these kinds of results will not lead to practical measures for families in the near future — although we may hope for that — we still need to embark on treatment research that is informed by evidence-based approaches.
Here I concur with the two previous speakers in saying that, as you see in treatments that do not work, many practices have developed over the years. We have been involved in this field for 20 or 30 years. Every year or two, a new technique or approach is sold by people on the Internet, and parties then borrow money from parents to take advantage of and develop these ideas.
Parents are stressed. We know the stress of parents with autistic children, compared to parents of a child with Down syndrome, for instance, is much higher. Parents with a lack of clear understanding of the disease want to try anything that might help. We understand that. Parents are willing to try things that may not work. on the chance it may work.
Unfortunately, some techniques can be harmful to the child. Children have died from chelation therapy based on the notion that mercury poisoning is causing autism, which is completely untrue. For this reason, we need to provide evidence-based information to Canadian families to inform them of what works and what does not.
On the next page, you can see that one approach has been the treatment and education of communication handicapped children, TEACCH. This patient of mine, Jacob, who is nonverbal, has been using these pictograms so he can communicate. He does not have any words but he communicates with his family using these pictures. This method has been around for many years. The evidence for the efficacy for this method has not been as good as we would like, but we have techniques like this that work.
The next slide shows you a full list of early intensive behavioural studies which have been performed. All have shown more or less that early intervention using the principles of applied behavioural analysis provide some benefit. It is true that only one randomized clinical trial has been published, which is the best evidence we have. In the next slide, you see the randomized trial of early intensive behavioural intervention, EIBI. In the experimental treatment, these children were young. After two years of EIBI, they made a gain of about 15 points of IQ, which is significant, and also gained in terms of their language and overall cognitive capacity. When you look at this study and at separate groups, some children did not benefit: others benefitted a lot. There is variability in the response to ABA treatment and to other treatments. We need to dig more into these factors. What factors explain the response of a child to a particular treatment approach?
ABA is a label which has different meanings. It refers to an original psychological approach developed by Skinner, which works. It works everywhere. Most treatment approaches use ABA principles but the ABA treatment is packaged in different ways. The Lovaas approach was one way to do it. Other recent ABA methods and other approaches use ABA principles but do not call themselves ABA. Some approaches may work for some children; others work better for other children. However, we do not know that much yet. More studies are being done at the moment, one at our site and others in the U.S., which are randomized clinical trials for young children. We will have more evidence of what does the most good for which children.
Finally, there are the last two slides. I concur with my colleague about the need for research. I wanted to outline a particular initiative that we took three years ago, organizing a summer school funded by CIHR, where we tried to attract into the field of autism research bright fellows from different disciplines, for example, occupational therapists, speech therapists, medicine genetics, and so on, by a mechanism that gave them fellowship. They all came to McGill University from different universities. Thus far, we have funded 30 fellowships. We are trying to boost research capacity in Canada and prepare for the next generation. The burden of care that was described before will require people in multiple disciplines. I would call for supporting the training of young researchers in that field, in addition to funding research per se.
The Chairman: Thank you very much. Senator Keon must catch a plane to go to that great city of Toronto, so I will let him begin the questions.
Senator Keon: Ms. Ofner, while you testified, I was thinking that we did not need anybody besides you and the former mayor; all other evidence was unnecessary.
This afternoon has been fascinating. I will impose upon you and the other committee members, and I apologize, but I do have to go. You have raised some important issues. Dr. Szatmari, you said we need a knowledge exchange centre, fundamentally, for autism. Where should it be located? I think the Public Health Agency of Canada could accommodate this centre probably better than Health Canada, but do you think it should be free standing or in one of those agencies?
Dr. Szatmari: I think it should be in a university. I think there should be a competition as to who gets it. This whole area of knowledge translation is an important part of doing research, and also in training people in the whole area of knowledge translation. When you were a scientist, I am not sure that in your training you spent a lot of time translating information to change clinical practice. That is what I think we need to do, and I think a university is best qualified not only to host this knowledge exchange centre but also to use it as an academic focus for training and sustaining the enterprise.
Senator Keon: Let me lead you down the garden path, then, and have the other two witnesses comment. The federal government seems to be ready to fund a research chair. I wanted to ask all three of you what form it should take, where it should be located, and so on. I think you have partially answered it. Tell me about it and then let us hear from both Dr. Fombonne and Ms. Ofner.
Dr. Szatmari: It is excellent that there will be a chair. I would also argue that there probably needs to be some discussion as to the mechanism that gets the most advantage — that is, the biggest bang for the research dollar. Is the research chair the best or only way to do it? Our colleagues in the United States, for example, have not really established research chairs in this mechanism. Instead, they have funded networks of excellence. They have funded scientists from different universities to come together as a team. That approach is exciting and innovative. That is really what CAIRN was. We also have launched this cross-national study where we follow children from the point of diagnosis until the end of grade 1. We have scientists from the Maritimes to British Columbia. This model is an efficient and effective way of producing more information, sharing it, and training the next generation. I missed your question a little bit on purpose.
Senator Keon: As you know as a scientist, the networks of excellence in Canada were a failure. In fact, only one of them survived, despite all the money poured into them. Dr. Fombonne, you are from McGill. You know which one survived.
I am not sure that you will get a lot of traction on that one, at least up front. Let us hear from the other two witnesses. What do you think could get the focus that is necessary?
Dr. Fombonne: I would argue again that the concept of a network is required. If the focus is on treatment, be it psychopharmacology or behavioural interventions, I know of virtually no centre that can recruit enough subjects in one given study. If you look at the studies of ABA, one problem has been the small sample size. What happened in the U.S. with the clinical behaviour analysis, CBA, and status centres network is that they brought groups together to create the sample size required. To give you an example, a current study on autism has recruited 149 subjects over a period of four or five years. Several studies had to be combined to recruit the necessary subjects. It is the same for the next generation of ABA intervention research: It will need to be multicentric. In a way, you can have a chair situated somewhere in the university setting, but the chair will have a mandate to be radiating, recruiting and working in a network fashion or multicentric fashion.
Senator Keon: CIHR will do that for you anyway, because CIHR wants to see collaboration before they fund individually. We want to help; we want to be pragmatic. We want to recommend things that will fly.
Ms. Ofner: Presently, the Public Health Agency of Canada has something called the Canadian Nosocomial Infection Surveillance Program. That program looks at research and surveillance for particular infectious diseases. The program is a collaboration of 48 different scientists throughout Canada. The chairs are the chairs of the Canadian Hospital Epidemiological Committee, CHEC: One is located out of University of British Columbia, one out of University of Toronto. The Public Health Agency of Canada has annual meetings. The chairs come to the meeting. The program is a collaboration between Health Canada and an outside group of infectious disease doctors who are experts in this area.
A similar thing could be done with autism. We could appoint two chairs at two universities to collaborate with the Public Health Agency of Canada. We would have federally funded forums. Recommendations and research initiatives are decided at the meeting. We could do this on a yearly basis. The format has worked well. It has been around for ten years. All the research that comes out of Canada with respect to nosocomial infections comes out of this group. I can envision something similar for autism. We could have two chairs from two different universities, and the rest of the autism researchers are part of the committee, and they work in collaboration with the Public Health Agency of Canada. The job of the Public Health Agency is to provide the researchers with the epidemiology and the research methods, and distribute the information to the public. For the nosocomial research, the information is on the website of the Public Health Agency of Canada. People know what studies are being done and the results. Everything is published and available for people to comment on before we send it out, and it is supported by all the researchers at all the teaching universities in Canada.
The Chairman: Committee members, I have been advised that we need to be out of here by 6 because the next committee starts at 6:15. That means we have eight minutes and three senators want to ask questions. I will go back to that brief one question format.
Senator Munson: Mr. Chairman, I do not know whether I took the circuitous route to being a politician. One term that drives me crazy is jurisdiction: provincial jurisdiction and federal jurisdiction. We heard from Ms. Ofner that we need to recognize in this country that autism is an epidemic, and yet we come back to this jurisdictional argument. The committee has heard that the Canada Health Act should be amended in some way to oblige the provinces to provide services for autism treatment. What is your view?
Ms. Ofner: The Canada Health Act does not list any diseases. It does not list cancer or AIDS. However, if there is some way that the federal government can say medicare should cover autism in some bill, or however the politicians do it, then the provinces will be obliged to cover it, because the provinces are the ones who decide where the health care money goes. They will be obliged to give the proper treatment to the people who will benefit from ABA or whatever.
Senator Munson: In the United States, there is all this money. Is someone in Washington saying to each individual state, "You must?" Is there a jurisdictional dispute there, or do people say, "Let's sit down, because this is a nationwide epidemic, and we must do something about it?" I am too close to this subject sometimes. This jurisdictional nonsense drives me crazy.
Ms. Ofner: The CDC makes recommendations. However, individual states are not required to follow the recommendations. That is the problem. The medical experts make recommendations, and the provinces have the right to choose whether to follow them.
Senator Cordy: We heard some interesting testimony this afternoon. The Canadian public is not aware of how staggering the numbers are of the children born with autism. As Canadians, it is important that we invest in our futures in terms of research and treatment for those who have autism.
My question is a two-ended one, since I am only allowed to ask one question. Are we getting better at diagnosing children who have autism at an earlier age? We have heard a lot about early intervention from witnesses who have appeared before us, telling us how well it works. We tend to think of autism as a children's disorder, but children grow up. How are we doing on the other end? How are we doing with teenagers with autism, and with adults? Is there research as to what works best with older children and adults?
Dr. Szatmari: One important implication of providing intensive early intervention is that we will move a large segment of the population of children with autism spectrum disorder along the spectrum, so we will move them from severe to moderate to milder, as it were. The relative proportions will be different, and that change will have huge implications because the expectations of their adaptation in high school and as adults will be different in the next ten years or so.
We have little in the way of evidence about social skills training, vocational training and the level of services that we have. I hate to say it, but Canada is embarrassing compared to Scandinavia, the United Kingdom and countries in Europe, in terms of provision of services for adults. No one has taken ownership of the adult problem in the provinces, whether it is health, social services or education. Everyone thinks it is the responsibility of someone else.
Dr. Fombonne: Diagnoses are increasing in terms of the age at which we diagnose children, so if you look at the U.K. data, which I know well, 15 years ago the age of diagnosis was five years of age. The average age of diagnosis now is three years of age. Now we see children at age two or 18 months. Everywhere it has decreased, because we pick them up at an early stage through better education. For this reason, we have a window of opportunity that is created because now we can intervene earlier. We believe, although the science is not definitive, that the earlier the intervention, the better will be the outcome.
Senator Callbeck: I had individual questions for each witness, but if I am only allowed one, I will ask Dr. Fombonne. On the chart you have given us, you have treatments that do not work. Is there general agreement among the professionals that work in autism research that these treatments do not work, or is this list from your centre or the researchers at your centre?
Dr. Fombonne: No, these are treatments for which there has been no production of any evidence-based efficacies. These are anecdotes or case studies. As has been said before, if you start to treat a child with anything, if you follow up at one year and you say there have been gains and you attribute it to any treatment, it is a wrong inference, because there is no comparison and no randomization at baseline. We need the method of randomized clinical trials, and these trials have not been applied to many of these interventions.
In addition to that lack, the plausibility for the efficacy of this method is low. Chelation, for instance, which assumes that mercury poisoning leads to autism, has no scientific basis. It is a belief. Yet, people develop practices, and parents engage in these practices and believe the change in their child as a function of simple biological maturation is due to what they have done to remove the mercury from the body. However, these practices can be dangerous.
The Chairman: We have run out of time. This has been a most interesting contribution to our knowledge about autism. Thank you to all three of you for being here.
The committee adjourned.