Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue 13 - Evidence
OTTAWA, Friday, December 8, 2006
The Standing Senate Committee on Social Affairs, Science and Technology met this day at 9:02 a.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: Good morning. I call to order this meeting of the Senate Standing Committee on Social Affairs, Science and Technology as we continue with our examination of the issues involving autism.
[Translation]
I would like to welcome everyone here this morning. The committee is anticipating an informative day which, I am sure, will greatly help us in the drafting of our final report on autism.
[English]
Members of the committee may recall that during our meeting of November 2 we heard from Dr. Rémi Quirion of the Canadian Institutes of Health Research, who introduced the idea of holding a round table on autism research. Today we welcome several distinguished specialists in the field who were proposed as participants by Dr. Quirion.
We have decided, for the sake of providing some structure to our discussion to split the day into two sessions. This morning, we will discuss what we know. After lunch, we will focus on what needs to be done or the way ahead.
On your agenda, this morning's session is called ``Autism in Canada.'' Elements of the discussion, as you will note, include statistics on prevalence and trends, whether or not there is an epidemic, assessment tools used for diagnosis, diagnostic guidelines, treatment services and related wait times. We have heard a bit about this from parents, from organizations involved in autism spectrum disorder, ASD, and from some adults who are diagnosed with ASD. Variability across the country is the other bullet point on here with respect to assessment, diagnostic guidelines and access to treatment.
We will begin the session. This will be the only sort of formalized part. We will begin with an invitation for our 16 participants to make a short presentation. Please try to keep it to about four minutes. Given the number of participants, we have some time constraints, but it is important to hear what you have to say.
I will start with Dr. Ridha Joober, who is a researcher at the Douglas Hospital Research Centre in Montreal.
[Translation]
Dr. Ridha Joober, Researcher, Douglas Hospital — Research Centre: Good morning, Honourable Senators, dear colleagues. I would like to begin by telling you a bit about my field of research: I am a practicing psychiatrist; I work with adults and children, and I also do research relating to genetics and mental illness. I will, in my presentation, deal mainly with a few key elements that underlie my research work.
It is my belief that one of the most important findings recognized in autism research is the importance of genetic factors. It is estimated that approximately 90 per cent of the variability in this phenotype is due to genetic factors. I would like to put this in perspective in relation to the other psychiatric illnesses: 90 per cent of the factors involved in autism are genetic, which is more than in any other psychiatric disorder. I believe that this is a very important factor to be taken into account.
Another element I wish to mention is early diagnosis. Indeed, early interventions improve the long-term prognosis of those suffering from autism.
These two elements put together allow us to conclude that, if we are able to do an early diagnosis based upon genetic factors, then it will be possible to diagnose autism very rapidly and thus intervene even before any clinical manifestations appear.
That being said, even if genetic factors are very important in autism, we well know that it is not a simple illness genetically speaking and that, despite the numerous research initiatives under way, it remains difficult to identify the genetic factors involved in this illness. Major efforts will be required in order to identify these genetic factors, and I believe that, given the way research is presently structured and funded in this area, it will be vastly insufficient in order to achieve this objective.
[English]
The Chairman: Next, we will hear from Dr. Normand Giroux.
[Translation]
Normand Giroux, Associate Professor, Université du Québec à Montréal: Mr. Chairman, I am a professor of psychology, and more particularly of applied behaviour analysis and intensive behavioural intervention at the graduate level at l'Université du Québec à Montréal. I supervise intensive behavioural intervention internships and I co-direct doctoral research in this area. I have 40 years' experience in clinical child psychology and I have a four-year old grandson who is autistic.
In the brief I distributed earlier, and which you have copies of, I outline for you three age-based views of autism. I begin by talking to you about a 45 year old autistic adult, I move on to discuss a school-age child of 11, and, finally, I deal with the case of a four year old boy, my grandson. I show you, with empirical data to back it up, the difference that applied behaviour analysis and intensive behavioural intervention programs can make in the lives of these people, depending upon their condition and their age.
In this brief, I also attempt to evaluate, to the best of my knowledge, the additional costs required in order for Canadian children affected by pervasive disorders, aged one to seven years, to receive early intensive intervention. According to my calculations, an extra 350 million dollars would have to be put into the pot.
Furthermore, access to services remains very problematic, because the waiting lines for diagnosis are clogged, and that is the first serious obstacle to receiving early intensive stimulation intervention services. I therefore recommend the establishment of express lines for this condition, the treatment of which is dependent upon the speed with which interventions are made and their continuity at as early an age as possible.
In my brief, I also propose the establishment, in all of Canada's provinces and territories, of at least one centre of excellence in intensive behavioural intervention for purposes of demonstration and of support to the various bodies that offer intensive behavioural intervention. I identify the problem of staff training and of program standards as being the second most serious problem that we are faced with today, after that of access to diagnosis.
I propose a three-part model and provide you with a broad description of what a university on site ABA and IBI centre might look like. I provide a diagram as well as costs. As a matter of fact, this is a project that I submitted to my home university. It was very well received, but they have no money. That is all I have to say for now.
[English]
Dr. Lonnie Zwaigenbaum, University of Alberta — Glenrose Rehabilitation Hospital: Thank you for the opportunity to participate. I am a developmental pediatrician. I am associate professor of pediatrics at the University of Alberta. I spent most of my career at McMaster University.
This committee has already heard about some of the challenges faced by Canadian autism researchers, particularly with respect to resource constraints and compared to our neighbours to the south. However, we also have something very special in Canada. It is a collaborative spirit and a sense of collegiality that allows us to work together across the country to address the most pressing needs in autism research. It is from that experience that we can have a national perspective and a sense of how there is variation across the country as well as common themes and challenges.
Let me speak to the issue of prevalence and the question of whether there is an epidemic. There is no question that the best prevalence data on autism spectrum disorders in Canada comes from my esteemed colleagues around the table this morning. They can speak to the data from their outstanding research with greater authority than I.
The first Canadian epidemiologic study of autism was conducted by Dr. Susan Bryson in Nova Scotia and Cape Breton in the 1980s and estimated a prevalence rate of one in 1000. In contrast, in July Dr. Eric Fombonne reported on children and youth attending the largest anglophone school board in Montreal and based on current diagnostic criteria estimated a total rate of 6.5 per 1000 of autism spectrum disorder, including 2.2 per 1000 who met full criteria for autistic disorder. I believe this is similar not only to recent prevalence estimates from the U.S. and the U.K., but also to administrative and service data from Dr. Helene Ouellette-Kuntz, together with Dr. Jeanette Holden's group ASD- CARC, Autism Spectrum Disorders Canadian-American Research Consortium, which is examining rates of autism at centres across the country. Administrative data is not entirely comparable with population-based prevalence studies; there is a remarkable convergence around this figure of just over six per 1000.
Does this increase in prevalence rates represent an epidemic? Beyond the formal interpretation of the term in a purely epidemiologic sense, I think the critical question is the following: Is the increase in rates entirely accounted for by changes in ascertainment in our diagnostic concept or are there contributing factors as well? As we do not yet have studies that have used the same criteria in the same communities over time, we do not have the definitive answer to that question.
From my perspective, the more pressing issue is that autism, which was regarded as a rare or uncommon condition, is now diagnosed in one in 165 children. It is one of the most prevalent developmental disabilities, compounded by arguably the greatest and highest burden of suffering of all disabilities. Autism has become a genuine public health issue regardless of how we interpret the prevalence data.
There is no question that there is remarkable variation in how diagnostic services are organized across the country and in particular how diagnostic assessments are conducted. The location varies tremendously from community physicians to regional health centres to tertiary care centres. Some regions work together in a coordinated matter. Other regions work with considerable gaps, with people working in isolation and a lack of coordination. This is often simply a reflection of the history or idiosyncrasies of the region.
It is worth commenting that, with the increased prevalence of autism, this is no longer a condition that can be restricted to tertiary care centres. We need to build the capacity of communities to be able to serve and care for their own children.
Taking that into account, there is a need for increased use of standardized assessment tools to improve the quality and consistency of diagnostic assessment. It is also very important to keep in mind that training, mentorship and support are also needed so that diagnoses are not based on a cut-off on a diagnostic tool but are based on a deep understanding of the disorder and its impact on children and families.
It is important to acknowledge the increased complexity at the ends of the age range in terms of diagnosis for very young toddlers as well as adolescents and adults. Our research has suggested that there are exciting opportunities to diagnose autism at an earlier age.
I am referring to the research of Dr. Bryson and myself together with Dr. Peter Szatmari, Dr. Wendy Roberts, whom you heard from previously, and a number of other esteemed colleagues. We are working with a group of infant siblings of children with autism, looking at their early development and trying to understand processes around early diagnosis. Based on our experience with this high-risk group of infants as well as on our collective clinical experience, it is increasingly apparent that there is at least a sub-group of children with autism who could be diagnosed by the age of 18 months. The behavioural signs are there to be seen at an even earlier stage, not only by parents but by experienced and sensitive professionals.
However, there are considerable challenges as we push the limits of our clinical experience and our available assessment tools. Considerably more work is needed in this area.
In terms of treatment services and wait times, again there is tremendous variability across Canada. When we think about wait times and need for service, we must consider the needs at every step in the process, from recognition and acknowledgment of parents' developmental concerns, necessary referrals for diagnostic assessment, waiting for assessments for treatment programs, and of course in some areas of the country there is a further wait once the child is acknowledged as being in need of the most intensive interventions, yet the intervention providers are not available.
I know there has been discussion before the committee that in areas such as Alberta, where to many there is a perception of more easily accessed services, the limitations are human resources: the lack of trained personnel. It underlies the complexity of the issue, that this is not simply a financial resource issue but a collective need for more expert professionals who can support these families.
It is also important to keep in mind that we are not talking only about intensive preschool intervention; we are talking about a range of other supports as well, such as respite for families who are providing support to their children.
Finally, we cannot lose sight of the needs of older individuals with autism, adolescents and adults. We have a wave of preschoolers who are being diagnosed and served right now. Autism will become the next epidemic unless we address the needs of the older population.
The Chairman: Thank you. You may have brushed up against the four minutes. You packed a lot in.
Dr. Zwaigenbaum: My colleagues would say that that is not the first time.
The Chairman: You mentioned Dr. Bryson several times. She is next.
Dr. Susan Bryson, Dalhousie University, Department of Pediatrics, Autism Research Centre: Thank you very much for the opportunity to speak here and for your efforts on behalf of individuals with autism and their families.
I am a researcher, a teacher and a clinician. Currently, I consult to all three provincial government departments in Nova Scotia: Health, Education and Community Services. I speak to parents and service providers virtually every day. It is based largely on those interactions that I comment today. I will not take much time emphasizing some of the very important points that have been made by colleagues and advocates before me.
Let me emphasize several things. Autism does form a spectrum of related disorders. While some individuals are less severely affected, the vast majority suffer severe impairments. That is important for us to keep in mind.
Even among those who are less severely impaired, social isolation and psychiatric problems such as severe anxiety and depressive orders are common. Most of these youngsters suffer enormous bullying, particularly through the school years.
These are facts well corroborated by our research, by the research of others, and by reports of parents and professionals. However, I do want to emphasize that there are success stories as well. In the context of developing early intervention in Nova Scotia, I have witnessed directly the joy and relief of parents whose children now speak and no longer tantrum, lash out or bite others. Similarly, I know of adolescents and adults who have been appropriately treated for depression and now are much more able to function effectively.
Two points bear emphasizing here. First, despite the many outstanding research questions, there is evidence of treatment effectiveness. Second, despite the fact that we need a continuum of care, it is important not to over- complicate the challenges.
We have learned a great deal about evidence-based best practices. These can be adapted to meet the diverse and individual needs of children, adolescents and families. There also is a need in Canada for us to establish treatment priorities.
What are the central considerations for a national strategy? I think an evidence-based website would be helpful, as would greater national awareness of autism and its challenges.
I emphasize that these do not even come close to addressing the real challenges they face right now and in the immediate future. I think the critical issues that have been identified by others include the following points. We need to reduce wait lists for diagnosis and treatment. Wait lists of 12 months to 20 months are just untenable, if not unethical. We also need transparent pathways of care with single entry points so that parents are not further frustrated by trying to make sense of our systems.
As to treatment, the time is right for Canada to make a major investment in people with autism. We need to establish treatment priorities, and treatment programs need to be embedded in well-funded studies of efficacy. We also need to make concerted efforts to train others, particularly child clinical psychologists, speech language pathologists and adult psychiatrists.
Like other countries, we need to invest in research, not just basic research, but research focused on evaluating treatment as well. We can learn from others, model programs that have been developed for cancer, diabetes, and autism elsewhere. We need opportunities to develop model programs of care and training.
We need to put our best minds together to develop competitive, innovative proposals to reduce waiting lists and to develop and evaluate high priority programs for treatment and training.
We need help from the federal government, but we also need partnerships from the provinces. We can change the autism culture in Canada, and as Ms. Mary Anne Chambers said, a Canadian autism network is important, but it will be more viable if we can share our successes and multiply them across the country.
Canadian families want efforts aimed at improving their lives and improving the lives of their youngsters. I hope my comments have been helpful.
The Chairman: Thank you. Next is Dr. Peter Szatmari, who has been before us another capacity.
Dr. Peter Szatmari, Head of Division of Child Psychiatry, McMaster University: Thank you very much. I am very pleased to be able to come back today and share some more of my thoughts about how to develop a national autism strategy.
Last time I came I spoke on behalf of CAIRN, the Canadian Autism Intervention Research Network. Today I want to talk more about my role as a scientist and think about the ways in which science, policy-makers and parents can work together to develop a national strategy.
Let me summarize. One of the major projects that many of us around the table are working on is Autism Spectrum Disorders: Pathways to Better Outcome. I sent you a brief summary of that project. We are excited about the project because it is an opportunity, probably the largest study of its kind anywhere in the world, to follow young children with autism from the point of diagnosis until the end of grade 1. That time frame represents a number of key transition points in the development of those children, including the extent to which they enter into a service and begin to receive some interventions but also make that key transition into the school environment where the services available to them are quite different.
We embarked on this particular study because there are so many gaps in our evidence about how these children develop. Let me briefly summarize what we know and emphasize what we do not know.
We know that the majority of children with autism spectrum disorders have a very poor outcome. There is no cure for this condition. Think about that: there are very few conditions in medicine that affect children for which there is no cure. Perhaps 10 per cent of the children have a good outcome, and by the time they are adults do resemble typical adults, but that leaves 90 per cent of this population who have a poor outcome.
On the other hand, these children do improve over time. Their autistic symptoms are reduced, their language skills improve and some of their social skills improve, but every time there is an improvement, there is a new challenge, because expectations in their environment change and so they are challenged more.
For example, as they get older, although their autistic symptoms get better, they develop new disabilities like psychiatric disorders. Dr. Bryson and I have recently completed a study following kids into late adolescence and young adulthood, and we found that 60 per cent of our population of higher functioning kids with autism spectrum disorder develop an anxiety disorder or a major depressive disorder. That is 60 per cent compared to a general population rate of 10 per cent to 15 per cent.
Another very important thing is that, as adults, individuals with autism require support for their living arrangements and for a vocation. Currently, with the closing of institutions, more and more adults with autism are living with their parents and, as their parents age, that becomes a very difficult environment for them.
Another important issue is variability. We do not know why some kids do so much better than other children. There is enormous variability in those who have better language skills and those who have better cognitive skills. Some do quite well, but some continue to do very poorly. We have no idea what accounts for that variation. We are studying that closely in our longitudinal study project.
We are looking at the time to receive a diagnosis. We believe that the longer it takes to receive a diagnosis, the poorer the outcome of these children might be. We know that there is enormous variation across Canada in the time it takes to get a diagnosis. There is no formal data on this, but in our study we are including children from Nova Scotia, Montreal, Hamilton, British Columbia, and hopefully from Alberta as well. We will be able to measure the time it takes from when parents first become concerned about their child's development to the time of receiving a diagnosis, and how long it takes from getting a diagnosis to entering into treatment.
I know from informal discussions with colleagues across Canada that frequently it takes a year from the time parents have a concern until they get a diagnosis, and it often takes another year to get into treatment. That is two years before they enter treatment. Since we know that the earlier these children enter treatment the better they do, that is unacceptable. We have to try to understand some of the factors that lead to those delays.
It is fair to say that over the last five years policy-making for children with autism spectrum disorders has in Canada roughly been determined by the legal system. The policy that has been developed in different provinces has been made as a result of parents challenging provincial governments in court. Those challenges have even gone to the Supreme Court.
Scientists have been left out of this discussion, and it has not been a constructive discussion. The discussion has been filled with conflict, animosity and adversity. A very important thing that this committee could do is to try to develop opportunities for scientists to become engaged in that discussion on how policy should be developed in this country.
One example is that with a number of colleagues, including Dr. Adrienne Perry, who is here today, we are developing clinical practice guidelines for the development of services of intensive behavioural intervention in Ontario. We are reviewing the literature to learn for whom this intervention is most effective, what benefit we might expect and how long they should have treatment.
Previously all these important decisions were based on opinion, not on a review of the evidence. At least in Ontario, I think we will be able to help decision making in this area totally based on the evidence. There are parents on our committee as well as scientists and policy-makers, and working together like that will enable us to see the way forward.
The Chairman: Thank you very much, Dr. Szatmari. This is the first time we have heard the statistics that you cited, which are based on your research. We are very happy to have that.
We have quite a number of written submissions from our witnesses, and I appreciate those as well.
Dr. Jeanette Holden, Co-Director of Research, Queen's University — Cytogenetics and DNA Research Laboratory: Thank you very much. I appreciate this opportunity as well.
In addition to being a professor in the department of psychiatry and physiology at Queen's University, I am a sibling. I have a brother with autism who turned 54 years old last week. I speak from the perspective of a very close family. Although I have not always lived with my brother, my brother and my mother have now lived with me for six and a half years. I brought them from Vancouver to Kingston, which was a big shock, but they have adapted extremely well.
I am speaking to you from the experience of thousands of families that I have met and spoken with over the many years of my involvement in the research community studying intellectual disabilities and autism.
I entirely agree with all the previous comments made by my colleagues here. There are other things that I would like to bring to your attention from my unique perspective of a sibling. I am not sure that siblings have yet been represented at this meeting.
When my brother was very young, he was typically tantruming, very upset with things and very frustrated with the world. That is my childhood memory of autism. Children who have changed remarkably as a result of various kinds of interventions give much hope to families. Although this condition is very difficult and very trying for families, the fact that there can be such changes means that there must be ways in which we can make a difference to the lives of all children with an autism spectrum disorder. That is one of our goals.
We must also remember that this is an extremely heterogeneous condition and we must identify the various factors that contribute to the disorder.
Our research group, ASD-CARC, is interested in understanding autism spectrum disorders. The more I see my brother and observe what is going on with him, the less I understand what autism is about and how it works.
Remarkably, at the age of 50 my brother started talking. It is amazing that he went from non-verbal to talking after half a century. It is a tremendous gift for my mother, who is now 84, as all parents would understand. The problem is that waiting 50 years for that to happen is not acceptable.
It is very important to recognize that treatment effects can be astounding. I can think of no greater gift to a child than giving them a means of communicating their interests and needs, be that through language, drawing or music.
I think often about the fact that my mother does not drive anymore. She may have a craving for something. Think about an item you may have a craving for but you have no way of getting it because you cannot go out to the store. That is the life of a child who is non-verbal.
Every single day of their lives, these children cannot indicate to you where they are hurting because they do not have a good appreciation for where they are hurt. They cannot tell you that they do not like something except by tantrumming, getting frustrated or by becoming upset over something. They cannot tell you that they like something very much because they cannot put their hands on it; they cannot go out and get it. We have to remember that giving a means for communication is critical. Giving a means for social interaction and being accepted in the social setting in regular everyday grouping is critical.
Waiting for the train yesterday in Kingston, I started speaking with a lady. I tend to do that kind of thing quite often. We exchanged a few interests and so on. I told her that I have a brother with autism and I did research in this. She said she had a son with autism. He died at the age of 22. Twelve years ago, he committed suicide.
As Dr. Bryson has pointed out, these individuals, adolescents who may be very verbal, are feeling socially isolated. We must be able to help incorporate them and give them the gifts. It is not that they do not want to be a part of society. The stereotype of autism used to be that they did not want to be a part of the world and therefore went into a corner. On the contrary, they cannot deal with the world, so they must be given the gifts to do that.
I have also been thinking a lot about how we could pay for this. Our research is aimed at trying to establish technology to accomplish that. We have established a website called Autism Connects, in which we are putting families together through discussion forums and providing information about all of the resources available in a specific area and an opportunity to learn about research updates, as others have pointed out.
I would like to conclude with one thing. My mother is 84 now. For 54 years, she cared for my brother every single day. She has had five days away from him in 54 years and eight days to attend her mother's funeral.
She asked me to provide this message to you: Do not make other mothers wait 54 years before they have some idea that their child will not be alone after they are gone. My request to you: Do not let my mother wait any longer either. Make sure that all families get the attention they need, not just children who are very young, but throughout the ages. These kids grow up, and so do their parents.
The Chairman: Thank You. Dr. Fombonne has also been with us before in another capacity. Welcome back.
Dr. Eric Fombonne, Director of Child Psychiatry, McGill University Health Centre: I would like to provide four points in my brief statement. The first deals with epidemiological data, and I want to reinforce what has been stated previously.
It is very clear now from most studies, including the recent ones in Canada, that the rate for pervasive developmental disorders, PDDs, is at least 0.6 per cent of the population of children, which makes the disorder one of the most common handicapping conditions.
In our study involving the youngest age group, age 6, the rate was 1.1 per cent. There are studies in the U.K. and studies from the U.S. that indicate rates closer to the figure of 1 per cent. If we take the rate of 0.6 per cent or 0.7 per cent as an estimate, which is agreed upon by most people now, it translates into 55,000 Canadian youth under age 20 who have a PDD today. I think that emphasizes the scope of the public health problem you are dealing with in your committee.
There is much reason to believe that a large part of this increase is due to changes in concepts over time and increased, improved diagnostic criteria that have been broadened. However, there remains the possibility that there are additional factors and that change in some type of environmental risk mechanism may also be contributing to these increased numbers. I think the idea that we need to monitor what is happening with the incidence of autism in several populations should be followed up.
The second point deals with detection and early diagnosis. Over the last 20 years there has been so much progress in terms of the age at which we diagnose young children. In most studies completed about 20 years ago, the mean age at which children were diagnosed was roughly age 4.5, 5 or 5.5. Presently it is more likely age 3 or 4 in many centres. That has improved, but there are still gaps and waiting times that are problematic and concerning for families.
The typical pattern is that parents become aware of problems at age 16 or 18 months on average, and then they must wait. They go to their pediatricians, and there is a waiting time of six to eight months before they are taken seriously. Then they refer the child to us, and they wait in my centre for 12 months at this point in time before they can be seen.
By that time, they are three years old when we diagnose them. We refer them to community resources where an additional waiting time of eight to 12 months is very common. By then, the child is four years of age. Sometimes if they are five years old, they will not have access to ABA, applied behaviour analysis, because the school system will take over the care and these children will have missed opportunities that are quite considerable.
I think all of these waiting times are problematic. We need to address them by training and primary care professionals. We now have tools that need to be improved but do a much better job than years ago in detecting the first signs of autism.
By decreasing the waiting times, I think we could improve the outcome of the population of PDD in a serious way. We need to address that.
I agree with Dr. Zwaigenbaum that the scope of the problem is such that not only tertiary centres are implicated. We can deal with this as a public health problem, and we need to boost community resources in all sorts of ways to address it.
Third, I concur of course with my colleagues that we are all engaged in genetic research. That needs to be pursued. We have strong evidence that genetic factors play a role, but the research has so far been frustrating.
It will be years before we identify genes. Maybe less than that, but it will take time before we develop a disease model and the genetic research becomes informative for treatment. We need to conduct research on treatment efficacy. We have, as you know, evidence that early interventions and all sorts of interventions actually do make a difference, but there are many unknown factors in this research.
I think it is important that scientists get involved in this debate in Canada. There are many claims, but not all of them are based on solid data. We know that many interventions work, but there are many unknown factors in that regard.
For instance, when should intervention start? Is there a critical age period beyond which treatment does not work as well? We do not know exactly. We have ideas, but we do not know exactly which treatment will match a particular type of child with a particular type of outcome. We do not know that. We need to develop that.
I think genetic research and treatment research should be combined because there are probably some genetic factors that mediate treatment response. We could probably join the two forces in that way.
My last point deals with service delivery. We are concerned about young children's access to services, but as was stated before, I think there is a paucity of services for adolescents and adults in various parts of the country. I am concerned that with the increasing numbers, we are not prepared as a country, as provinces, in terms of services, community integration and vocational training to deal with these new numbers of adults or teenagers who are currently maturing.
Louise Fleming, Executive Director, Autism Society Canada: Autism Society Canada is pleased to have been invited to participate in this round table. We are the national autism charity with member organizations in all provinces and two territories. Our provincial and territorial member societies provide direct services to individuals with autism spectrum disorders and their families. As a national charity, our mandate is to work toward the necessary changes that will improve the quality of lives for Canadians with ASDs across their lifespan. We promote current understanding of ASD issues. We work with our many partners to address the national priorities facing our community. We are a member of CAMIMH, the Canadian Alliance on Mental Illness and Mental Health, and we support the recommendation to create a mental health commission which came out of the Senate committee's report.
We lend our support and we participate in research projects to ensure that stakeholder perspectives and concerns are incorporated and that there is a mechanism for disseminating the results of the research.
We need to ensure that there is knowledge translation to truly improve outcomes for people with ASDs and their families. Our most recent involvement in research is as a decision-making partner on the systematic review of autism interventions that is being undertaken by the Cochrane Child Health Field and is funded by the Alberta Centre for Child, Family and Community Research. Autism Society Canada sees targeted autism research that is adequately funded as key.
At Autism Society Canada, we consider people with autism and their families as vital parts of the autism community. Many people with autism as well as their parents have developed considerable expertise about autism. Their first-hand knowledge has made them strong and compassionate advocates. We believe strongly that individuals with ASD and their families must be included in the research agenda.
In 2002, we worked with our many partners to organize and convene a Canadian autism research forum. The Canadian Institutes of Health Research, CIHR, and the National Alliance for Autism Research, now Autism Speaks, were our funding partners. Several researchers around this table helped us plan the research workshop and participated in the workshop: Dr. Holden, Dr. Bryson, Dr. Szatmari, Dr. Mottron. As well, many people around this table had their research awards included in our white paper: Dr. Zwaigenbaum, Dr. Scherer, Dr. Fombonne, Dr. Lewis, Dr. Yu and Dr. Perry. We see ourselves very much as part of the research community in Canada.
Since we convened our workshop and issued our white paper, which has been distributed around the table, we have worked with our many partners to develop a comprehensive national autism strategy. We are pleased that the government has taken some baby first steps to develop and implement a national autism strategy, and we know these are modest first steps, and we will be working to ensure that there are many more steps taken by this government and future governments to meet the multi-faceted needs of our community.
We are pleased also that members of Parliament this past week recognized a pressing need to establish a national autism strategy. These MPs, senators around this table and other concerned advocates have been working hard to make this a reality.
As our workshop white paper indicates, we have been talking about a national autism strategy for many years. This is not a new term for us. We believe there are some key components, and you will probably hear about some of them from the various researchers. From our perspective, we need a comprehensive plan; we need to make it a national priority; we want Health Canada to work with researchers; and we need people from around this table to undertake surveillance and reporting. It is essential that national guidelines for treatment and service delivery be established so that appropriate services are available regardless of age and no matter where a person lives. This is not the case in Canada now. If you live in a rural area or if you are a francophone living outside of Quebec, you do not get those services.
We need the Government of Canada to work with the provinces to get guidelines in place so that we can ensure appropriate treatment is being provided. We need to improve screening and diagnosis. You have heard that from the experts; I will not elaborate further. We need to improve access to treatment, and that is a comprehensive point in our strategy with many details that perhaps I will have a chance to speak about later. We need to improve services and supports across the lifespan. We see that as an essential component of any plan.
The last point I would like to make is that we need to foster research. We believe that significant funding should be given to the funding agencies to help support the excellent research from the researchers around this table. The Combating Autism Act that was recently announced in the United States includes almost $1 billion over five years for autism research. We would like to encourage the government to provide significant new funding for our excellent Canadian researchers.
We want to ensure that all Canadians have access to treatment, supports and accommodations, not just those living in large centres who have access or have their own personal means of accessing treatment. We feel that this is a right for all Canadians with autism.
Tammy Ivanco, Associate Professor of Psychology, University of Manitoba: Good morning, honourable senators, colleagues and visitors. I was excited to be asked to speak at this discussion for a national strategy for autism. I come to the table with a slightly different perspective than many of the people here. I do not work with children; I work with animals, and I am interested in how the animal brain changes in response to experience. Certainly, we know that looking at animal models can tell us a lot about what is going on in human beings. In my lab, we are interested in how the brain undergoes learning, and one of the ways that we do this is look at animal models of disorders. That is why I am interested in autism.
I was excited by a colleague's comment here when he indicated that bringing people together at this table was quite wonderful. Canadians are good at doing things with very little and, unfortunately with the issue of autism, it is hard to do a lot with little, the cost of treatment options being so high for children over a long period of time. Research options for looking at autism are problematic because autism is not something you can look at quickly and understand a great deal.
I would like to talk about the idea that autism is very observable. Dr. Holden talked about things we see in cases of autism, such as a child having tantrums or not speaking, but there are many unobservable things that are much more difficult to investigate, and I am hoping the national strategy for autism would help look at those.
With respect to the idea that autism is a genetic disorder, looking at genes is expensive, but by looking at genes we will understand more about susceptibility genes and modulating genes. The diagnostic ability of understanding genes is so important for autism. If we could identify genes that are associated with autism, we would have a great tool for understanding or better diagnostic situations.
Autism is a brain disorder, and we often see the results of a brain disorder in the behaviour children exhibit. We need to understand what is going on in the brain. Autism is very different from other brain disorders that we do understand. We know it is not a single gene disorder. It is not something like Parkinson's disease where you have a single type of cell that is affected. It seems to be much broader. Unlike Parkinson's, it does not have an advocate like Michael J. Fox. The symptoms and severity suggest that many brain regions are involved in creating the behavioural problems that we see in children, and one of our goals is to understand what brain regions are involved, why they are involved and what happens.
Autism is a developmental disorder. We have heard that if you incorporate treatments into children's lives earlier, you have better outcomes. I would like to argue that children have autism from early on after conception, not five years of age when they are often diagnosed. We have a responsibility to understand how we might diagnose even earlier. It seems a long shot to be talking about things like prenatal assessments that provide diagnostic ability for clinicians, but I would like to see that in the future; we should be able to look at kids even younger and target them with therapies much earlier. Again, that is a long-term goal, not something I expect to happen next week.
It is important to remember that autism is not an isolated disorder. It is often seen with other kinds of childhood disorders, such as ADHD or attention deficit hyperactivity disorder and seizure disorders. Many of those disorders have some type of treatment. When we are giving children treatments, we do not understand what happens with all of these treatments. A child that has a developmental disorder has an altered brain to start with. We do not understand what the treatments are doing to his or her brain, and when we combine that situation with potentially combinations of treatments for a series of disorders, we do not know what is happening.
We also need to think in general about keeping these children healthy and happy for the long term. Kids are difficult to study. We know we have tools like MRIs and others that we should be able to use, but kids are difficult to put in MRI machines. We need to think about ways to investigate brain disorders in children and use a more comprehensive strategy.
We have short-term goals that relate to early treatment, mid-range goals that relate to better treatment, and long- term goals that relate to understanding this genetic and brain and developmental disorder that can help us get closer to cures.
Dr. Suzanne Lewis, Department of Medical Genetics, Children's & Women's Health Centre of British Columbia: Thank you, honourable senators, friends and colleagues. It is an honour and a privilege to be here today and to be afforded this opportunity to meet with you.
As a clinical professor at the University of British Columbia, but primarily in my capacity as a pediatrician and a clinical geneticist, I have had the pleasure of working with individuals and families with autism spectrum disorders for nearly 16 years. Autism spectrum disorders, or ASDs, have a strong genetic component to their cause. Yet, their mode of inheritance is unclear. A complex cause involving multiple genes and their interactions with environmental factors is most likely.
Autism is a spectrum disorder, meaning that the symptoms can be present in a variety of combinations ranging from mild to severe. In genetics terms, ASDs are considered to be heterogeneous. That variability confounds attempts to define diagnostic criteria and to identify its underlying cause and effective treatments.
It is very difficult to accurately diagnose autism, since this is based solely on behavioural and developmental indices that vary by age, by function and by the diagnostic instruments used. Since ASDs are variable, or heterogeneous, the lumping together of all cases without subgrouping based on common characteristics makes the identification of culprit genes extremely difficult. Methods of separating individuals into subgroups based on specific clinical findings are vital. Therefore, a multidisciplinary approach is needed. It is critical to understanding ASDs, together with advances in their genetic and clinical characterization that are essential for more accurate and early diagnosis, prognosis, prevention and timing of what we might call best-fit services.
Over 14 per cent of cases of autism co-occur with other well-described genetic disorders. I think that the frequency is probably higher. Many are due to clinically undetectable changes in our genome — that is, the gene structure that makes up our human genes — which new research technologies are now able to identify. We are also better able to identify physical characteristics of autism that to date remain largely unrecognized despite indications that the earlier diagnostic tools can be applied to recognize autism risk, the better the outcome.
Through ASD-CARC, we have applied three-dimensional facial imaging as a means to objectively discern facial features unique to autism when compared to both non-ASD siblings and controls. These tools, which are novel in their nature, help recognize the more than 20 per cent of individuals with autism that have unique physical features or other medical problems. This is important, since these individuals are at least twice more likely to have lower IQ scores, seizures and abnormal brain structure. All these findings are vital to recognizing other medical and developmental risks, guiding approaches to therapy, and approving prospective health management. Such findings also correlate with a high rate of chromosome changes in autism, which can be detected using novel genomic screening tools which may assist in uncovering underlying autism susceptibility genes.
In the last two decades, the number of children diagnosed with autism has grown significantly, and so have society's ethical responsibilities. Society needs to radically re-think the conventional models for recognizing and treating autism and for understanding its causes. This needs to be supported. Autism is now more common than childhood cancer. Yet the number of researchers working within the field of autism is not commensurate with the number of researchers working in those other areas and the amount of research is the not proportional to the number of cases identified as compared to other disorders that begin in childhood.
Canada has a relatively small nucleus of experienced, high quality researchers who are working specifically on autism issues. Collectively, we form a strong foundation from which to build greater capacity through enhanced funding, training initiatives, and a research agenda sustained through interdisciplinary, interinstitutional and international networking and autism research. ASD-CARC serves as an example of such a coalition, together with others around the table.
We are very enthusiastic about contributing to a national strategy for autism and an autism research agenda that enables adequate funding supports for research and training, building capacity in the field of autism research and expertise throughout Canada and elsewhere that will translate back to benefiting our patients and families with autism spectrum disorder now and in the future.
The Chairman: Thank you. I want to reiterate that the focus of this morning's session is the current state of ASD in Canada. A number of you are jumping in with suggestions about the way ahead. That is fair; you may not get the opportunity to the extent you want this afternoon. However, by and large, we are looking for what are the problems and the issues around ASD in Canada at present. This afternoon we will get to your advice about the way ahead and what this committee should be considering as part of its report and recommendations to the government.
Adrienne Perry, Department of Psychology, York University: I am a child psychologist and board certified behavioural analyst. I have been involved in diagnosis, treatment, research and training in the autism field for many years. I appreciate the opportunity to be here, and I thank you all for your efforts on behalf of children with autism and their families.
I want to highlight a few issues that I thought would be less likely to have been highlighted by others, although some of them have been mentioned, related to research and training and the service system.
First, I will address gaps in research and research funding. In spite of recent advances, there are still many gaps in the research about autism, as well as the important genetic and neurobiological research that needs to be funded. It is also important, first, to properly fund developmental research such as attention processes, cognitive abilities, and so on, associated with autism; second, to evaluate new controversial treatments quickly that come up frequently in the autism field; and, third, research on psychosocial interventions as they are being applied in the community. In Ontario, my colleagues and students and I have done a number of interrelated studies on the effectiveness of intensive behavioural intervention.
Training is next. Greater knowledge about autism and greater training is needed at many levels. I am sure you have heard that many times before. Some progress is being made, but there are significant shortages, particularly in the senior professions. For example, behavioural intervention programs are usually supervised by psychologists or behaviour analysts. It takes about 12 years to train a child psychologist. We cannot graduate enough of them quickly enough to meet the demand. There need to be more Ph.D. programs or the ones that exist should be expanded. There needs to be greater financial support for graduate students and internship opportunities so that they do not have to go to the U.S. to complete their training.
I will now move on to the service system. There are many service gaps and inequities, as you have heard. I will highlight several particular issues, some of which have been mentioned by others.
In the preschool years, all experts agree that early intervention is crucial. Most would say that intensive behavioural intervention is the treatment of choice, but many children are not receiving it quickly enough. The IBI program in Ontario, for example, though it involves a substantial commitment of resources, is now being provided regardless of age. The unfortunate consequence of that is that the two- and three- and four-year-old children, the most likely to benefit, are not receiving it, and they remain on long waiting lists as the program is serving mostly school-aged children. It is imperative that action is taken to provide IBI as early as possible after diagnosis.
Although some older children may continue to need intensive, comprehensive services, the issue becomes where that should happen and who should pay for it. Should it be departments of social services? Should it be departments of education? Should it be departments of health? The children do not care who pays for it. They just need us to get on with the job. Maybe we can talk more about that this afternoon.
School-aged children are entitled to an appropriate special education, yet many parents are dissatisfied with what is being provided. Teachers, educational assistants and others need training in autism and in behavioural teaching methods and then ongoing supervision and support from psychologists or behavioural analysts. The school system as a whole needs to demonstrate the will to provide appropriate, evidence-based methods of education or intervention.
Some in the education system are fond of making a distinction between education and treatment, stating that their job is education and not treatment, but the treatment that a child with autism needs is to learn how to communicate, to learn how to behave and so on. Children need intensive, comprehensive intervention in a variety of ways — whether you call it treatment, education, therapy or whatever. The children do not care what we call it. They just need us to do it.
The service system for adults is woefully inadequate, as others have pointed out. The recognition of the mental health needs of adolescents and adults is very important and often missed and misunderstood.
Research has shown that families of children with autism experience high levels of stress, more than families with other types of disabilities. However, many cope amazingly well. You heard from some of the well-coping, articulate families. Many other families are struggling just to cope on a day-to-day basis and would not be able to appear before you, so there is a great need for respite care services and other family support services for parents and siblings. They need not just more services, but a greater coordination and integration of services would also benefit families who spend a great deal of time and energy seeking out various components of service in a fragmented system.
I would be happy to elaborate on any of those points later in the question period.
[Translation]
Dr. Laurent Mottron, Researcher, Faculty of Medicine — Psychiatry, University of Montreal: Mr. Chairman, I am a professor at the University of Montreal and my area is cognition neuroscience. I am also a clinician with probably a thousand stories of autistic adults' lives behind me.
The purpose of my work is to understand how autistic people process information, create representations and categories and how they memorize them once they have reached that stage. The main result of our work is the demonstration that autistic individuals, with a brain that is profoundly different from that of neurotypical people, manage to successfully process the same information as us on condition that they be presented with data that they are capable of processing.
The point of my intervention is to introduce a few false notes in the apparent consensus that exists around early intervention and its most calibrated aspect, ABA. I would also like to propose that another research agenda, with another logic, be integrated within the national strategy.
The reasoning that you have heard up until now, and that you will hear yet again because I believe it is somewhat of a temptation of the mind, and that I especially wish to refute, is that we already know what must be done — ABA or IBI, which are related methods — and that the main purpose of this meeting here is to pursue the government in order to get more money to do these things that we are already familiar with.
The research version of this reasoning is to say that we must do evaluative research, that we know of a certain number of treatments and that we must simply compare their effectiveness in order to arrive at something that is based upon evidence, so as to replace claims or rumours by substance based upon data.
I believe that, to the contrary, that is not at all the way to go about things. The effects of ABA, based upon present day knowledge, have not been in any way proven scientifically — the methodologies are not valid scientifically speaking and their long term effect — over more than three years — is completely unknown. There has been no proper study of the future development, as adults, of individuals treated with ABA, and there has been even less of a comparative study of the long-term effects of ABA and simple spontaneous maturation.
The long-term effects of ABA on IQ and language are insignificant. There is at present — and it is rather conservative people who are saying this — no relationship between the duration of the use of these methods and the results obtained. No method is truly better than another and, finally — and this is a detail which has its importance —, the great majority of lobbying efforts on the part of autistic adults are opposed to these methods. Which tells us something.
If I am targeting ABA, it is because of the disproportionate importance this technique has been given by national lobbying efforts, because of the fact that it is virtually compulsory in Quebec and because of the apparent consensus it seems to be enjoying among several of the other Canadian groups represented here.
I greatly fear that, with regard to avenues of treatment, the government may give in to lobby groups that have nothing to do with any real scientific consensus. This is all the more worrisome because the lobbying on the part of the parents of young children who are traditionally vulnerable to exaggerated information on miracle treatments is also traditionally much stronger than that of adults who have no one to defend them and whose parents are either old or have passed away.
According to the data that we can deduce from Dr. Fombonne's work, there are in Canada approximately 200,000 autistic persons, of whom 47,000 are children and 150,000 adults. Of that number, 26,000 children are aged between 10 and 19 years.
In my view, present day consensus on early intervention is quite damaging to adult support. Today, in Quebec, there is a one year waiting line to obtain two hours every two weeks for job and housing support, as opposed to some ten to fifteen hours of automatic intensive behavioural intervention.
This is why I made the decision to listen to, to defend and to represent here autistic adults. Given that the financial envelope is not elastic, I will do this by targeting, among other things, the intellectual paucity of the scientific basis for modern early intervention, which is gobbling up all of the available resources.
This is also true to some extent of intensive behavioural intervention overall. It is to my mind urgent, and I would like this to at least be added to the national agenda, that research be done on natural autistic learning modes. I believe that we should in fact be looking for the equivalent, for the autistic, of what sign language is for the deaf.
For a century, people harped on about sign language preventing the deaf from talking, and it is thus that they were forcefully discouraged from using sign language. Then, they came out with the cochlear implant as a means to cure deafness and to eliminate the use of sign language.
It is my belief that sign language for the deaf has its equivalent for the autistic in hyperlexia, with natural learning, without any specific effort, nor information having to present certain characteristics.
I believe that the ambition of treatment should in fact be to extend the capability of processing information from the savant syndrome to autism in general. Because if one compares the percentage of autistic people who spontaneously learn to speak and to read to the entire autistic population, then one sees results that have no relationship whatsoever with the results attributed to behavioural methods.
This is particularly true in the case of the spontaneous learning of the written code, and I believe that there must also be an equivalent for the oral code.
[English]
Dr. Wendy Edwards, Director, Autism Canada Foundation: Mr. Chairman, honourable senators, peers and guests. I will make my opening comments brief. I have been invited as a director of the Autism Canada Foundation. However, I hope you will allow me to speak also as a pediatrician who works in the trenches with these patients and, more importantly, as the mother of an autistic son.
Statistics show us that the prevalence of autism is growing at an epidemic rate. This country is in a state of crisis with a lack of professionals to provide diagnosis and effective treatment to patients with autism. Canada needs a national autism strategy to ensure that individuals diagnosed with an ASD have their multi-faceted needs met over their lifespan and to ensure that guidelines to monitor that treatment are adequate and appropriate for all levels of ASD.
I, along with Autism Canada Foundation, am of the firm belief that the best chance for improvement and potential recovery is a multidisciplinary approach to treatment. This approach should include not only behavioural and educational therapy for the child but also biomedical treatment. Individuals' metabolic needs must be met for them to be in an optimal state to learn. I see over and over again in my practice children who have been responding beautifully to dietary and nutritional therapies. I have letters with me here today from many parents who feel strongly that this treatment, with or without IBI, because some are still on a waiting list, has resulted in increased eye contact, increased speech abilities and increased socialization of their children, amongst other things. As a mother, I saw first hand extremely dramatic improvements in my child with the start of biomedical treatment. He only blossomed more when we added behavioural interventions.
The question is how the federal government will ensure that every individual diagnosed with ASD is given what he or she requires to be the best they can be. Whatever this best might be, we must never lose sight of the fact that we are dealing with individuals and what works for one does not always work for another.
Please do not be misguided into believing there is only one therapy for treating autism. IBI treatment is wonderful and I wholly support the use of it with autistics. However, I also support doing more than just that.
I was disheartened to read in the November 11 issue of the National Post — the National Enquirer for doctors — that Ontario's program of intensive behavioural intervention for young autistic children is so effective that nearly half, 41 per cent, of the mild to moderate autistics left the program as non-autistics according to analysis. I assure you that many of these children are not just receiving only that one intervention. I know this because my child is part of that number and many in my practice are part of that number too. There are many other variables that are not accounted for in this study, one of them being co-morbid use of biomedical treatments for these children. I feel that these variables deserve some attention and also part of the credit for how well these children have done.
Not only do we have to lessen the waiting list for diagnosis and IBI treatment, we have to understand what might be causing this epidemic. We acknowledge the contributions of the research that has been done thus far. Basic science has been focussed on genetics and brain imaging, but there is also new research looking at the biology of autism. I would like to see this supported by government funding as well.
Autism Canada Foundation applauds the multidisciplinary research team at the University of Western Ontario that is looking at environmental factors, particularly involving diet and digestive tract and their impact on childhood autism. They are looking at compounds produced in the digestive tract and found as a preservative in foods that can result in inflammation of the gastrointestinal track and neuronal tissues of ASD patients. This research was brought forth to the committee before.
This research could certainly lead to novel ways of risk reduction and/or screening for the general population and children at risk. We need a two-pronged approach to the national autism strategy. We have to provide timely access to multidisciplinary treatment for people with ASD, which would involve biomedical treatment and support, educational assistance and behavioural instruction and intervention.
Also, we need to fund multidisciplinary scientific and reliable research to identify not only the best practices for treatment, but also to find possible causative factors and perhaps one day a cure for this disorder.
Dr. Stephen Scherer, Senior Scientist, Genetics and Genomic Biology, The Hospital for Sick Children: Honourable senators and colleagues, thank you for the opportunity to address you. I am a professor of medicine at the University of Toronto, associate chief of infrastructure at the Research Institute of The Hospital for Sick Children, the director of The Centre for Applied Genomics and a fellow of the Royal Society of Canada.
I will take a few moments to bring the committee up to date on the latest breakthroughs that you will hear about in the next 12 months or so regarding the genetics of autism. We heard quite a lot about the fact that genes probably account for up to perhaps 90 per cent of susceptibility to development of autism. That is based on twin studies and family studies that are well established in the scientific literature.
Less known is the role of Canadian scientists, many of whom are sitting around the table here, in an international effort to understand and discern the genes involved in the development of autism. As indicated, it is a very complex problem. We know that more than one gene is involved, perhaps up to a hundred genes. To tackle such a complex problem, a group of us around the world came together. There were 170 scientists from 19 countries. I have a handout that will be circulated after my presentation that summarizes this activity. Thirteen scientists in Canada, from seven different cities, are involved in this project.
The idea was to collect DNA samples initially from families that had two or more affected individuals and from what we call single trio families with one child with autism. We used the latest state-of-the-art genetic genome scanning that allows us to look with high resolution at hundreds of thousands of markers across the human genome to see which of those are associated with the development of autism.
We have found that we can use this data to come up with a genetic model that we think is roughly correct, though of course it has to stand the test of scientific review. Papers have now been submitted and you will hear more about this probably in the press in the next few months.
As was indicated earlier, it seems that 10 per cent or so of autism arises due to the combination of other medical conditions. In some cases probably a single gene is sufficient to develop a condition of autism. These are single gene disorders. This may account for perhaps 1 per cent to 5 per cent of autism cases.
Using new, state-of-the-art genome scanning technologies, new microscopic or sub-microscopic changes have been detected in about 10 per cent to perhaps 15 per cent of cases. This is entirely new technology, much of which was developed in Canada. In this 10 per cent to 20 per cent of cases, this information will be very important for early diagnosis. This will be coming now to clinical diagnostic laboratories in the next few months.
For the remaining 70 per cent to 80 per cent, most likely the genetic model is that a person has to have one or more so-called common genes to develop autism. In other words, the genetic variants are present in the general population and the susceptibility of autism depends on how the combinations of those variants are inherited.
For the first time, we actually have some type of model around which we can start to develop good hypotheses. This will lead us at least in some instances to a potential for early diagnosis and, perhaps more importantly, to an understanding of the basic, fundamental cause of the disorder.
I should say this has been a large project. It has been funded primarily in Canada by Genome Canada to the tune of about $7 million. Canadian Institutes of Health Research is also involved. The worldwide commitment is $35 million over the next four years. The people around the table who are involved are Peter Szatmari, Lonnie Zwaigenbaum, Susan Bryson and Eric Fombonne.
We are very excited that we are entering a new era where we can start to understand the etiology at least from the genetic perspective of how autism develops, but we have a long way to go. Genetics is very complex. Even for single- gene disorders, like cystic fibrosis and Parkinson's disease, when you identify the gene it does not mean there is a cure. We have to have continued investment. However, I am proud to say that Canada really is the lead country in this international effort. We need to continue and in fact enhance that investment.
Also, this needs to be done in a way that brings together basic and clinical researchers in a multidisciplinary approach. Very importantly, any investments that go into the research have to go through a very thorough national or international peer review type of system.
I would reinforce what Dr. Szatmari said earlier that right now we are lacking in involving scientists in policy development. That is one part of the project, not just at the provincial or national level but at the international level also.
Helene Ouellette-Kuntz, Associate Professor, Departments of Community Health and Epidemiology and Psychiatry, Queen's University: My comments to you today will be from the perspective of an epidemiologist and the work we have done over the past five years, detailed in the brief I submitted.
The simple fact that you have in this room the first authors of the only three papers that have been published on the prevalence of autism spectrum disorders in Canada is remarkable and indicates that not much work has been done on this subject. We have Dr. Bryson's work which dates now from approximately 20 years ago; Dr. Fombonne's recent study in Montreal; and our paper that was published this year as well, reporting a rate of three per 1,000 in Prince Edward Island and Manitoba for children under the age of 15.
I would like to comment on the approach that we have used in our study of the prevalence of these conditions. We have been working on this for the last five years, but it has not simply been to do a prevalence study; rather, we wanted to establish a network of collaboration and a system of data collection that allows us to consider what is happening with the prevalence of ASDs across regions and over time in our country.
We have established the national epidemiologic database for the study of autism in Canada, and that is proceeding in three phases, thanks to funding from Canadian Institutes of Health Research.
We have established teams in Newfoundland and Labrador, Prince Edward Island, South Eastern Ontario, Manitoba, Calgary and British Columbia. These regions of our country represent approximately 23 per cent of the population. It does not cover the entire country, but a fair chunk. Our collaborators in these regions include government departments of education, health and social services and, in some areas, boards of education, as well as diagnostic and treatment centres.
Over time, because we are collecting this information on an ongoing basis, we will be in a position to comment on trends. In the meantime, we have been able to access information from the Ministry of Education in British Columbia and have examined the assignment of a special education code for autism in that province over a nine-year period from 1996 to 2004.
We found that in 1996, approximately 1.2 per 1,000 children between the ages of four and nine years in British Columbia had this code assigned to them. In 2004, that number had risen to 4.3 per 1,000. Because of the way this data is collected, we are able to consider how the identification of previously undetected cases, or what has been looked at and described in the United States as diagnostic substitution, replacing developmental disability or mental retardation with autism and so on, affects the number. We have also been able to examine migration, children moving in and out of the school system in that province, and changes in the denominator to consider what is left after you eliminate all of those factors.
We found that those factors explain all but 26 per cent of the increase. In the end, the increase is less than 0.1 per 1,000 that is left over. That is in the assignment of special education codes in one province.
We know, then, that a portion of the increase may still be due to an increase in risk. We cannot eliminate that possibility. However, there are certainly a number of other factors that explain the increase in diagnosed prevalence in our country.
Are there too many children affected? Yes, definitely. However, an epidemic would mean in excess of normal expectancy. I would argue that we are just beginning to understand normal expectancy of this spectrum as defined today. That is a major challenge we face.
We must continue to monitor the prevalence, the occurrence of ASDs, but this must be based on standard clinical and diagnostic approaches over time and across regions. Through our work over the past five years we have learned important lessons that might be of interest to an eventual establishment of ongoing surveillance of ASDs in this country.
First, not every province currently has the capacity to centrally provide information on children diagnosed with ASD. Diagnostic approaches vary, not only across provinces but also within provinces. Some information that is relevant to surveillance is not systematically recorded in clinical or educational files of these children.
Finally, we know that we are in an era where privacy is a major concern, and in some of the regions we are studying we are required to obtain consent from families to participate. That becomes very critical if we want to count and know how many children are affected. Our response rate to participate in this study is in some regions as low as one third of parents, yet in Prince Edward Island as many as two thirds are participating. We must take that into account if we are to establish a system that will require the participation of parents.
At Queen's University and involving various collaborators across the country, we continue to work with our partners in the various regions to improve the quality of the data that we are collecting and to provide timely analysis of our data and other data, such as from the Ministry of Education in British Columbia.
C.T. Yu, Director of Research, St-Amant Research Centre, University of Manitoba: I am pleased to be here today. I am an associate professor of psychology at the University of Manitoba and director of St-Amant Research Centre. I specialize in applied behaviour analysis and developmental disabilities. My research involves both children and adults with developmental disabilities, including autism.
I would like to give you a very brief overview of my collaborative research and then offer some comments on ABA treatment and training. Over the last few years, I have been working with other researchers from ASD-CARC. In Manitoba we have established a regional research team to support this collaboration. For example, Dr. Ab Chudley from the Faculty of Medicine is engaging in genetics research, while another scientist from the National Research Council is engaging in imaging research. I have been working with Hélène Ouellette-Kuntz and others to study pervasive developmental disorders.
In Manitoba, the epidemiology study has received tremendous provincial support from Eleanor Chornoboy, the director of interdepartmental initiatives, and from Children's Special Services under the Department of Family Services and Housing. I am also collaborating with colleagues from various institutions across Canada to help train the next generation of autism researchers. This interdisciplinary training program involves mentors and trainees from various institutions. This project is also funded jointly by Canadian Institutes of Health Research and the National Alliance for Autism Research.
A third project I am involved in is the longitudinal evaluation of children receiving applied behaviour analysis, ABA, or intensive behavioural intervention, IBI, in Manitoba. The ABA treatment program for children with autism in Manitoba is funded by the province and is directed by Dr. Angela Cornick, the director of the ABA program and psychology services at the St-Amant Research Centre.
Last year, in collaboration with St-Amant and with the support of the provincial government we initiated a five-year follow-up of children after graduation from the program.
I would like to comment briefly on two issues regarding ABA treatment and the training of personnel. Regarding training of personnel, our current capacity to train graduate students specializing in applied behaviour analysis is simply not keeping up with demand. A lack of qualified personnel causes delays in treatment and stress for families. Another serious consequence is that programs must fill positions with less qualified people, which, in turn, impacts negatively on the quality of the service.
Regarding the delivery of ABA intensive early intervention, I am concerned with maintaining the integrity of the treatment, and this relates to the variability of services. Considering that ABA intervention spans several years, upholding the integrity of treatment is a daunting task, but one that we must accomplish.
We need to keep in mind that the current research evidence supports not just an intensive intervention defined by the number of hours, but an intervention that is based on principle and methods derived from the experimental and applied behaviour analysis of behaviour.
Having trained and qualified personnel is an important step. We also need to develop standards of practice to help practitioners to maintain treatment integrity. Having such standards will also help consumers to distinguish this treatment from the spectrum of available services and to make informed decisions in choosing what is best for them.
The Chairman: Thank you to all of our witnesses. You have provided a wealth of information. I feel a little overloaded here. You have certainly covered the range of subject matter. You have dealt with prevalence a great deal. I have heard many statistics on that. The need for early diagnosis and early intervention was a theme that I detected more than anything else from the various presentations. Certainly, that is one that I want to explore with you further this afternoon.
Before I go any further, I want to introduce the members of the Standing Senate Committee on Social Affairs, Science and Technology. They are interspersed here. I did not bring their biographical material, so I will wing it. That is a risky business with my colleagues.
I see Senator Joyce Fairbairn, a senator from Alberta. Senator Joan Cook is from Newfoundland and Labrador. Senator Jim Munson has been particularly interested in this subject and has referenced it here through Senate resolution. I always think that Senator Munson is from New Brunswick, but he points out he was appointed for Ontario. I know where his heart is. Senator Nancy Ruth was here briefly. She has left and might be coming back. She is a senator from Ontario, from my city of Toronto as well. We have the deputy chairman of the committee, our own in- house cardiologist, Dr. Wilbert Keon, who, along with my predecessor who recently retired, Michael Kirby, has done some outstanding work in the health care area, having produced most recently Out of the Shadows at Last, a report on the mental health situation in Canada and what the federal government can do. It is a great report that I hope the federal government will adhere to.
One of the good things about our committee is that we have people of different political parties, but you will have a hard time knowing that at times, because they are into the policy development much more than the politics.
I am Art Eggleton, a senator from Toronto. I used to be a member of the other place, as we call the House of Commons. I appreciate the difference being here in the Senate and having the chance to get our teeth into subjects such as autism.
I will ask my colleagues to begin the dialogue or questioning. They may direct questions to individuals around the table to clarify some of the remarks that you made in your presentations, or they may direct their questions to the floor, in which case I will need to see your hand if you want to say something about the question posed.
Senator Keon: Thank you all very much for giving up your day to help us with this tremendous dilemma. It truly is a difficult subject to grapple with, so I will zone in on one area. I will ask the six people who talked about genetics to address the following. Maybe in the next round I can come back to some of the other interesting comments that were made.
Perhaps, Dr. Scherer, you could lead off. I will ask you a semi-political question, as well as a basic science question.
The whole field of genome scanning technology to me is tremendously exciting. For example, it is breaking down the leukemias into a group of diseases. You in genetics know this better than I, but I find it exciting. Instead of us talking about this big disease entity, we are now getting right down to the nuts and bolts, so that specific drug therapy can be targeted and, more than that, can be followed.
I am not clear just where genome scanning technology is in autism, but I suspect it is the tool we need to separate all the entities that you are trying to grapple with and that we are trying to grapple with in the report.
I would like to ask whether collectively you think that this exciting technology on the horizon has the capability of accurately defining the entity and the subgroups of the entity.
I will ask you something else, Dr. Scherer. How important is it that Genome Canada continues? Could CIHR fill the void if Genome Canada did not continue?
Dr. Scherer: It is absolutely critical that Genome Canada continues. It fills a very important niche to study large- scale biology that CIHR could not do. Genome Canada is an arm's-length agency of Industry Canada, the federal government, that funds large-scale projects to the tune of millions of dollars, in genomic and proteomics studies.
As was indicated by several speakers, to do this type of science is very expensive. I talked about the worldwide project; the genome scan that we did on about 6,000 individuals cost us roughly $5 million. That was paid for mainly by non-Canadian sources, so in fact we leveraged that investment quite well.
This type of large-scale, very expensive science does not fit within the mandate of CIHR. If we want to be competitive, active and leading, which actually we are now, we need to continue to have funding for Genome Canada.
I would point out that Genome Canada funds not only health but also forestry, fisheries and agriculture, the study of any genome of any organism, in order to understand the biology of it, and of course the applications of that information.
Senator Keon: I will move down to the science. Can you see on the horizon the kind of breakthroughs that are there in other entities?
Dr. Scherer: This is the experiment we did. The genome is the total complement of DNA in the cells, the collection of all 30,000 or so genes. If you could scan the genome at a high enough resolution, could you get a bar-code, if you will, or a fingerprint that would help categorize the different genetic groups that are contributing to what we call autism spectrum disorder?
We try to design the experiment in the best way. We try to use as many individuals from as many different geographical backgrounds as possible and, most important, use the state-of-the-art technology at the time.
We used two technologies to do this, and we have now used a third. All of this data has been submitted to a very high-impact journal and we got excellent reviewers' comments back. I think the study will be published soon. We will have to wait and see.
As I said earlier, we know that there are probably a small number of single genes that, when there is a variant or a mutation, can give you all the classic characteristics of autism. That is published in the literature. If you do a karyotype under a microscope, you can see changes. In about 5 per cent to 7 per cent of cases the individuals would have a chromosome change that you do not see in the parent or in the general population. That is well established.
The new technology that allows us to scan the genomes is picking up new changes in these individuals, which again we do not see in the parents or in the general population, in 10 per cent to 15 per cent of cases. We are not entirely sure yet what that means, but it is suggestive that those regions or genes are involved in some way. This is largely unpublished research.
The remainder fall into a grab bag of probably several genes that need to be involved. We can categorize those 70 per cent or 80 per cent of cases into families that have specific genes located on specific chromosomes in the genome. We think we have mapped seven or so of these.
We were quite surprised to see one specific chromosome region come up in families that have more than one individual with autism when there is a female. We did not expect that. That gives a hint at the biology and reinforces that our data is probably correct. I suspect that there are dozens of genes involved, but we can now start to categorize them based on this genome scanning.
The price of doing these types of experiments has dropped drastically. For the technocrats in the audience, we are typically using an Affymetrix 500,000 single nucleotide polymorphism array. A few months ago that experiment would cost about $2,000 to perform. We can now do that experiment for about $400, which is in the range of a typical clinical diagnostic test. In fact, a karyotype is about the same price.
I am concerned about how the information will be interpreted by the families and the medical community when these scientific papers are published. There will be a push to have these tests done. How will we provide the tests? Most clinical diagnostic laboratories cannot do them yet. Also, how will we understand the information? That is why we need a multidisciplinary approach to attack this problem.
As we all know, technology will move things forward. People are accepting technology and they will look to it to provide information for things like family planning and, of course, early diagnosis.
Over the next six to 12 months much information will come out in the press. In a way, we are well positioned in Canada because of the way the molecular diagnostics are delivered, in that they largely come through hospital-based testing. The basic scientists need to work closely with these labs to ensure the right tests and technologies are in place and that the information is delivered in the right way.
[Translation]
Dr. Joober: I would like to make a comment on what has been done in genetic psychiatry in general. Over the course of the last ten to 15 years, there have been many publications and much talk about genes, but the major problem does not so much have to do with discovery. It is rather the replication of results and ensuring that the results truly are what they are.
The main problem we have is not so much the technological platform, because we have this platform here in Canada, from the genomics point of view. The big problem is that of phenotyping platforms. We do not possess sufficient technology to be able to characterize the heterogeneousness of these children with ASD.
As was mentioned earlier, autism is a very heterogeneous condition, whereas, in the case of leukemia, for example, there can be molecular markers present which therefore allow for more precise clinical diagnostic work. In the area of behavioural disorders, generally speaking our main limitation is phenotyping technology. This is a major problem, not only in Canada, but probably throughout the world, and it is not essentially a problem of discovery, because an awful lot of discoveries are made. It is more a problem of reliability and of replication of these discoveries.
[English]
Dr. Lewis: I would like to underscore what Dr. Joober just said. I very much support the importance of genome scanning and screening. We have been doing this for several years using a different type of technology that does make significant findings even though it may not be as high a resolution form of genome scanning. This work has been done collaboratively with colleagues through ASD-CARC, but the strategy was to focus on a multidisciplinary approach that involves myself, primarily as a clinical geneticist; my colleague Dr. Evica Rajcan-Separovic, a molecular cytogeneticist at the University of British Columbia; and Dr. Holden, a molecular geneticist, to try to cover the continuum of issues that Dr. Joober underscored that extend beyond the platform for screening. Our focus looks at families as part of this, not DNA samples.
We need to understand the individuals who are contributing to this research, because the heterogeneity of the disorder is so confounding to our being able to interpret what we are discovering. The challenge is to translate what is found in the laboratory to what we see in individuals or families to try to explain why some families have single- incidence cases whereas some have multiple-incidence cases. How does that speak to the genetics and the interrelationship of findings, and why would one single finding perhaps translate to a recurrence in one family?
It is much more complicated than simply defining the genetic studies. We must correlate them to the clinical findings that are behavioural in nature as well as medical and physical metabolic in nature — the whole spectrum of the disorder. You can only do that through hands-on translational research that extends from the laboratory to the clinic and back. I believe there is much promise in that kind of research if that kind of approach is taken and followed in the future.
I can speak to other things such as the involvement of Canadian Institutes of Health Research. They have been very supportive of that kind of research, perhaps in a different capacity than Genome Canada has, which tends to focus more on the technological development. CIHR was the first in developing an interdisciplinary health research team approach to research, which was essential to our ASD-CARC's formulating five or six years ago.
That kind of focus on supporting research must be sustained, but it has not been. That is unfortunate, because people formulate a team, take two or three years to get going, and then must focus the rest of their time on how to sustain themselves rather than on building upon the knowledge we have already gained. CIHR had the right idea; they just have to find the means to sustain it.
The Chairman: On the subject of genetics, I find it confusing that some people have one child with ASD and other children who do not have it, and some people have two children with ASD, with no signs of it in the parents. If genetics account for 90 per cent of it, I thought there might be some sign in the parents.
Dr. Scherer, the Genome Canada project with which you are involved is a work in progress. It sounds as though what they will learn could radically change how we deal with ASD in the future. It could change the diagnosis and the treatment.
We have all heard from people who say more research needs to be done and many things are still unknown. Will our recommendations be partly irrelevant in a few months' time as a result of the changing nature of the research, Dr. Scherer?
Dr. Scherer: I would ask Dr. Szatmari to comment. He is co-director of this project with me.
The funding for the Genome Canada project started in the last year or so. It brought Canada to the table as part of an international effort. It builds on many investments, particularly from CIHR over the last decade or so, where we have collected families and DNA samples and positioned ourselves. In order to complete that big experiment, we had to have a big investment of money. It cost millions of dollars.
We have a whole new data set around which we can start to develop new hypotheses. Over the next 12 months, several key papers will be published, not just from our group but from a few others, that will redefine our understanding of genetics. There will be more directed and targeted hypotheses in genetics research.
Genetics is not everything here. We know that. This is only the starting point. We still do not have all the genes. We will know the positions of chromosomes and be able to define and pinpoint changes in the genes. We need millions more dollars. The research becomes even more expensive.
I am quite confident saying there will be continued progress. I would suspect that over the next few years, not all but many of the genes will be identified. That will be significant progress.
The Chairman: Will that take several years?
Dr. Scherer: Yes.
Dr. Szatmari: We know that about six or seven per cent of families have two affected children. That is a much greater risk than in the general population.
Some families have risk higher than that — 15 per cent, 20 per cent, even 30 per cent. If there are two affected children in the family, the probability there will be a third is upwards of 30 per cent. That is a minority, but it is certainly much greater than in the general population.
We know that first-degree relatives, parents and children, also have a greater risk of traits or endophenotypes. They may not be obvious, but they are there. They could relate to difficulties with conversation, poor social skills or eccentric interests. That is what has been called the broader autism phenotype. It extends beyond the spectrum to isolated traits.
This makes perfect sense genetically. If we have 20 or 30 genes involved in the disorder, it makes a lot of sense the parents would have isolated traits that might come together, perhaps with a second hit that may be causing the disorder.
Further, I agree that the work we are doing will profoundly change the field, but that will be 10 or 15 years down the road. Probably the first thing that will happen is that we will have better diagnostic instruments and tools based on genetic findings we are discovering, but I think that will be in a minority of cases. We will continue to rely on developmental history and observation to make the diagnosis.
Once we have the genes and we know what the genes are doing wrong, too much or not enough of, we can develop better biomedical treatments. Even with the discoveries we will come up with in the next six months or so, that is a long way away. We have dramatic short-term issues that we need to address in the meantime.
The Chairman: Can you identify people who are more likely to have an autistic child by those traits that might be present in the parents?
Dr. Szatmari: No. That would be a difficult study to conduct.
Dr. Holden: Being a sibling and having talked to several families, I know there is absolutely no doubt that we all recognize that within our families there are traits that are very clearly on the autism spectrum.
When I give presentations it is predominantly women — mothers — who attend. We talk about this, and a large proportion of them say that their husbands are very much on that Asperger's syndrome spectrum.
There are definitely separate groups of families. There is a cluster of families where the mothers are very obsessive compulsive in the way they handle things. There are many fathers who are very distant and lack many social skills.
We know there are characteristics present in the parents. However, as Dr. Szatmari said, you cannot go the other way around and determine that those adults have a high risk for having a child with autism.
I am also a geneticist and I think it is also very important for us to recognize that in completing genetic studies, if we do not characterize the families more extensively and if we rely mainly on a few different types of characteristics in the children, we are not getting the full picture. Part of our research is aimed at detecting the other kinds of characteristics that we have been missing for a long time.
It is clear there are gastrointestinal issues in some children and not in others. There are issues of pain that some experience and others do not. What are these other complications? This will help us to define better the genes.
Dr. Scherer is right; you can start to narrow down a region. Once you have a better picture of all those complications in different children, you can start to narrow down which of the possible genes in perhaps a hundred are the ones that may well be contributing to part of the syndrome.
Dr. Lewis: I return to the importance of finding biomarkers. We have been pretty set in our ways at how autism has been diagnosed in the past. Diagnosis has always been based on behavioural indices that can be very variable, depending on the tool used, the age at which it is applied, et cetera.
It is critical to develop the kinds of technologies that will help us find genetic contributors. They may not be single; they may be multiple, as Dr. Scherer mentioned. They may be physical as well. We need to open our awareness to look for those correlating features. We can do that only by engaging families in research to provide the behavioural, developmental and clinical information that is so important.
Senator Munson: Thank you. I appreciate everybody's being here today. I cannot believe how a small statement made in the Senate of Canada, which I hardly covered as a reporter, can lead to an inquiry, involve other senators and precipitate this round table as well as bring all the witnesses we have had in the last few weeks. It has been a tremendous learning experience.
More than that, it is extremely important that we senators come up with a report that this government pays attention to and that there is more involvement. I do not want to get in the way of the way forward. I will have more complex questions this afternoon. For now I will ask simple reporter-type questions.
First, how long does it take to train the trainers? How big is the shortage? You talked about the closing of institutions and how autistic children and adolescents must live with their parents. I want to know where across the country those institutions are closing so that we can figure this out.
How much money is out there now for research? Is there is a broad figure that we can talk about? On the issue of Prince Edward Island and the figure of three in 1,000 children with autism, it was interesting yesterday that immediately Senator Callbeck, who is on this committee, realized that on PEI they grow potatoes and they use pesticides.
We are flooded with so much information from monosodium glutamate to the environment. It is almost too much information. Those are just four or five basic questions so that I get an idea of where we are headed this afternoon.
Dr. Bryson: In Nova Scotia, five regions of the province have no speech and language pathologists to work specifically with children with autism. I cannot comment on elsewhere, but that whole region has no speech and language service, despite the fact that communication disorder or communication impairment is at the core of autism. We are struggling.
We are also in dire need of clinical psychologists who have expertise in the treatment of autism.
We should talk about how to enrich training programs so that we can quickly make a change in this. The will is out there. We just have to talk about how to do it.
Dr. Szatmari: Child psychiatrists play an important role in diagnosis and in medication. We know that roughly 40 per cent to 50 per cent of individuals with ASD are on some form of psychotropic medication at any point in time.
In Canada, on average, we train 10 child psychologists per year, from Newfoundland to British Columbia; that is 10 for the entire country each year. Of those, hardly any go into the field of autism. One problem is that the training programs of the Royal College have so many components that no time is left over to develop other interests.
Regarding research funding, since 2001 CHIR has put $16 million into research funding. The National Institutes of Health in the U.S. put in $200 million in one year. Even considering the difference in population, that is a significant difference in the level of funding. The United States Senate recently passed an act for $1 billion a year in autism research. The Americans are way ahead of us in supporting research.
Most of the funding is from CHIR, but it is difficult. CHIR is extremely competitive. The success rate at CHIR is 17 per cent for everything. Autism does not have a protected window to receive some of that funding. I would request that there be a funding envelope for autism research at CHIR, that there be a protected amount of money that autism researchers can access.
The one area that CHIR has been poor at funding is treatment, because those requests go to the randomized control trial committee, which is used to funding large drug trials. The treatments we are doing, namely, psychosocial treatments, are very different from the large drug trials that are usually funded. I suspect that that committee does not understand the need for psychosocial treatments or how those treatments work. This funding envelope is important.
Dr. Bryson: The U.S. moved the research agenda for autism forward by allocating funds specifically for autism. That is how they changed the picture there.
Dr. Szatmari: With respect to the closing of institutions, a paper written in the 1980s tells us that 70 per cent of adults with autism were institutionalized in Ontario during the 1960s and 1970s. All those institutions in Ontario have closed since then.
All the support has been for community supports for people with developmental disabilities. However, as is case with psychiatric hospitals, the closing of the institutions has not kept pace with community supports for adults with developmental disabilities. They are left out in the cold without any services.
Parents most often go to the Internet to obtain information on autism. Most of the information available on the Internet is inaccurate. It is wrong, and it is an advertisement. We did a study evaluating the websites on autism, and they are all promoting their own product. They are not providing unbiased, evidence-based information. This committee could recommend a source of information that is evidence-based, scientifically rigorous and provides parents with simple-to-understand, credible information about autism.
Ms. Fleming: I want to respond to Senator Keon's question about how long it takes to train the trainers. Stepping back from the question of how long it takes, we need to ask who is providing services across the country and are they certified and supervised. In our organization, we hear regularly that social workers are providing ABA treatment in one part of the country and speech pathologists are providing supervisory services in other parts of the country.
The problem is that we do not have standards of care or of treatment. We believe that getting those standards in place is important for rolling out the appropriate services.
It is also important to understand that people who live in a rural part of Canada are desperate for services and will take any service they can find. Also, when parents look for information on the Internet, when they are desperate, they take those services. We can all understand that. Many people in this country have made a lot of money providing autism services. As a national organization, we are concerned about where the guidelines are. We know there are not enough clinical psychologists to provide the necessary supervision.
Parents need to find home care workers. We often hear that there is a lot of money in Alberta, but parents there tell us they cannot get anyone with training. Further, even to get someone who has only a little training to provide respite or supervised care costs parents $20 an hour. They get only so much from the province.
There is a problem with appropriate resources in the schools. Parents bring their children to school. If they are lucky, the children have had several years of ABA. Once in school, they may have an aide who has no training. Parents of children with ASD will tell you that September is probably the worst month of the year for them. They are back in the school system, having to deal again with training the teachers and the system to deal with special needs, because there is not that kind of training in the schools. We have a big problem on the service delivery side with not having adequate caregiver standards in place. That is a serious concern for our population.
Senator Munson: How long does it take to train the trainers? We have heard that most of them are coming from the United States or at least that that is where some of the training programs are. Why do we have to go to the United States?
Ms. Fleming: Sometimes that is where parents go. For example, people in New Brunswick may know a clinician in the United States. I know one family that set up a laboratory in their home. They bring in someone from the U.S. and many parents from around the neighbourhood participate.
A lot happens by word of mouth. If one is in a big city and can get a referral that is fine. Nothing replaces hands-on training and treatment by certified professionals, but there is a real gap in families' being able to access that. Measures are needed to fill that gap. Dr. Holden talked about the establishment of a service to provide on-line assistance to parents.
You heard from Dr. Karen Cohen earlier in the hearing. She talked about the lack of trained clinical psychologists. We could ask the experts around this table: How long does it take to be a clinical psychologist? We are not seeing them graduate today.
Ms. Ouellette-Kuntz: I cannot answer that question specifically, but another questions is who are we trying to train. We have information on nearly 5,000 children in the six regions we are studying. There is huge variability in who is involved in making the diagnosis. It is not clear across provinces whom we should be training to make clinical diagnoses and who should be involved at the diagnostic level. The recommendation is an interdisciplinary team approach, but not every discipline is involved to the same extent across the country.
Regarding Prince Edward Island, potatoes and pesticides, part of having a surveillance program is to look at large enough areas and different areas over time in order to identify a different occurrence of the disorder in a particular place. We cannot say at this point whether three per 1,000 in Prince Edward Island is in excess of the norm, but it is something we can be thinking about.
I will address funding and how we get to do this work. We have looked at what the Americans have done and the centres of excellence established by the Centers for Disease Control and Prevention in specific regions. Those centres do surveillance of the epidemiology of autism spectrum disorder in those regions. That is the model we used in our study.
[Translation]
Dr. Mottron: I would like to come back to Dr. Szatmari's intervention regarding the need to have non-biased sources of information. I obviously support anything this initiative could provide in the fight against fake science, to which, as we know, autism is particularly vulnerable. What worries me much more is the fact that this non-biased source is indeed always biased in favour of normalcy. In Dr. Szatmari's explanations, I have not heard anything about the place the autistic could have.
We are here talking in place of the autistic. The autistic were partially invited to this table. The same thing would not be done in the case of the gay community or an ethnic group. I am aware that this metaphor will bring screams to the lips of many, but it has some validity.
With regard to setting priorities for treatment, determining the role played be genetics and discussing the possibility of using eugenics for autism, I believe that the autistic should have their say and be invited.
A non-biased source of information is a source of information that should not be biased in favour of normalcy.
[English]
The Chairman: The other day we had a panel of four adults with autism. In a separate discussion, we had Michelle Dawson. We had different perspectives from those diagnosed with ASD. We want to take that into account.
Mr. Yu: I will try to answer two of the questions that Senator Munson raised earlier.
How short are we in terms of personnel? I can talk about what is happening in Manitoba based on my interactions with service providers. The ABA early intervention service for preschool-aged children has a wait time of approximately one to seven months. The school-aged program has a wait time of approximately one year. My understanding is that the wait time for diagnosis is also approximately eight months to one year. You can see the collective delay that could happen from the very beginning until a child receives service. With that delay, as others commented, we could be missing a critical window. That is important.
How short are we in terms of personnel? I am not directly responsible for delivering the service; I work closely with Dr. Angela Cornick, the director of the ABA early intervention service. She has a standing order from me: Any graduate students that we produce, they will take. The last time I spoke to her, she said they are the shortest in master and Ph.D. levels ABA-trained consultants. In terms of personnel, that is the area they are most short. They are also short on tutors who can work with the children directly. Looking at the wait times for diagnosis, we can certainly conclude that there is also a shortage of personnel to conduct diagnosis and perhaps a shortage in diagnostic teams.
How long will it take to train a trainer? You can look at different levels of training. I am speaking only about training in applied behaviour analysis. Typically, an ABA consultant who can practice independently to provide ABA early intervention service would require at least a master's degree or a Ph.D. with a specialty in applied behaviour analysis. At the University of Manitoba, we can take about 10 graduate students in this area. We are not keeping up with demand. We produce them as fast as we can. For master's degree students, typically it takes about two or three years beyond the bachelor's degree; Ph.D.s, are typically another three or four years. That gives you a sense of the amount of training time.
Ms. Perry: I would like to respond to the question about length of training for some of the senior professionals. There is no doubt that we need more child psychologists, speech and language pathologists, and more clinical psychologists. That is the area I am most familiar with. As Dr. Yu said, it does take a long time. Our capacity to train people is finite.
I work in the largest psychology department in Canada. We have 200 graduate students altogether, 60 of whom are in my program, the clinical developmental psychology program. They are working in many different areas of research and practice. About 15 of them are working in autism, in two different labs. Those students do a four-year B.A., a two- year M.A. and a four- or five-year Ph.D. The training for psychologists involves both an academic Ph.D. as well as the professional training interspersed throughout all of the clinical training, assessment and treatment. At the end of the Ph.D. they do a one-year full-time internship.
There are only 46 internships in Canada for the students. Many students must go to the United States to complete those internships. Also, not many internships are specific to autism. It would help to establish some autism-specific internship settings that would be accredited and paid internships.
Following the Ph.D. and the dissertation and the internship, people have to practice under supervision for one year and then get licensed or registered by their provincial licensing body. In Ontario, that is the College of Psychologists of Ontario. That takes a very long time. We do need the capacity to take more students. Last year, we had 25 short-listed students with A averages, very good reference letters and so on, and we could only take one or two because there are only two faculty.
I personally have nine graduate students, which is about four times more than most of my colleagues. I went to the university setting to train professionals for the field. We need many more people doing that and more financial resources supporting that.
Ms. Ivanco: There is definitely not a lack of interested students. Rather, we lack training opportunities, people to supervise and funding for graduate students. The lack of funding for graduate students is a big issue.
I wanted to comment on your discussion about pesticides and the environmental issues. I thought about mentioning it in my opening remarks, but I decided against it because it is a huge thing to discuss. It is true is that we have said at different times that there are environmental triggers for disorders like autism, but the question is how those triggers work. In the case of pesticides, one child might seem to have that as a trigger but the child next door or in the same household does not seem to have that trigger. That makes us aware that there are risks, but there must be some kind of predisposition. We have heard about the genetic components that are being investigated and the studies looking at the genes that are involved in susceptibility. The question really relates to that as well. We need to continue worrying about what makes children susceptible to autism. It may be that children who seem to have those environmental risk factors may also have genes that make them susceptible. Perhaps their genes give them a more fragile development that makes them more susceptible to the environment.
There is a possibility that some environmental factors have a big effect on a normal developmental time course and really what is happening is that these children are being exposed to environmental factors at a critical time during development. A number of studies have looked at what happens during neural tube closure and relate neural tube closure problems to autism and other developmental disorders. That also needs to be investigated.
Your question highlights the need to understand susceptibility to this kind of disorder.
The Chairman: I want to throw something else into the mix. One witness yesterday trotted out packages of foods containing monosodium glutamate, suggesting that MSG was a big factor. If any of you have comments on that, fine; if you do not say anything, I will understand that point as well.
Dr. Bryson: I have asked toxicologists about this, and they have argued that, at least today, there is not good evidence.
The Chairman: There is not.
Dr. Bryson: No. That is the argument. I was actually approached.
I would like to reinforce a few points made by Dr. Yu and Dr. Perry. Just so it does not feel absolutely overwhelming, I do think we could train some people at the master's level, which could be two-year post- undergraduate degrees. As long as we had Ph.D. people that they could consult with, we could have very high-level people, I think, at the M.A. level, which could make a big difference. That does not mean that we do not need to deal with the issue of who will train them and how we will enrich that training. If we continue to develop good treatment programs, that will make the problem of internships easier. The two can sort of feed each other.
One group we have not talked much about is adult psychiatrists. There is a tremendous need for them, because we have hardly any in the whole country who are prepared to see adults, even adults with really significant psychiatric problems. I have struggled with this for years. Maybe we need to look at continuing education, and maybe, rather than only training new people, we need to harness people who are already there.
I do not mean to be the doom and gloom, but I am also a little worried about seeing people leave the public system. Part of it is burn-out. Some of them are real champions and are very passionate, but they are being stretched so thin that job satisfaction has become an issue. We do not want to lose those people. We in the systems need to look at that and try to take care of good people we have in the system. There are ways we can do that.
Dr. Zwaigenbaum: I would like to comment on a couple of the common themes that are emerging. Our discussions about training the trainer and service needs should consider every level, from diagnosis through to intervention of many kinds. We have heard a number of people say that the people in the most senior and leadership roles are the ones who require the most training and expertise. However, it is clear that if we make only small efforts to change the capacity of the field in terms of those senior professionals, the impact will be felt far downstream and will be way too small. We need to make a much more concerted effort to promote clinical psychologists, speech and language pathologists and physicians at a number of levels to take on leadership roles.
I would like to go back to an earlier observation. Given how common autism is, the current paradigm of the expert specialist feeding down to various levels is just not working. Service and diagnostic expertise are concentrated in too few centres, often in large urban areas, often in traditional academic centres that do not necessarily serve Canadian children, particularly Canadian children in rural or northern areas.
Dr. Bryson mentioned adult psychiatrists. I would like to put in a pitch also for family physicians and community pediatricians. The range of professionals must start to play more and more important roles rather than our setting up a dichotomous system of experts versus non-experts, so that we have a range of expertise, each level supporting and providing mentorship to the next so that we truly have a coordinated approach to both diagnosis and intervention.
Dr. Lewis: I will speak on behalf of my colleagues in B.C. who are not represented around the table here. A distinct set of service guidelines has been in place since 2000-01 for establishing diagnosis and for developing the kind of coordinated approach that Dr. Zwaigenbaum described. The British Columbia Autism Assessment Network has the professionals leaving the ivory tower and moving out into the communities. That has been funded largely through the B.C.'s Ministry of Children and Family Development.
Even with the assessment network, there is a split or a gap between the medical and educational systems. It was not until September of this year that individuals with what we characterize as more the classic autism spectrum disorder — that is, autistic disorder, pervasive developmental disorder not otherwise specified, and Asperger's syndrome — were considered as one group in the educational system in order to also get those same services that are objectively and definitively given when individuals are assessed through the B.C. Autism Assessment Network, which also overlaps with funding that comes to help them in the home setting. It does not translate to the educational setting necessarily. That gap existed in B.C. until September of this year. Where does it exist elsewhere? Even if we had enough therapists to do the job, there is a gap in how service is supplied through different provincial ministries.
Dr. Fombonne: I want to come back to the issue of pesticides and MSG. In the field of autism and other fields, many claims are based on observational studies where people look at a trend or a difference in space or a difference in time and try to correlate that with any other things that have changed in the same interval of time. That is what we call ecological studies, which usually lead to correlations, positive or negative, and give the illusion of a causation that is captured by the correlation, but it is not the case.
We have multiple examples of that in the epidemiological literature — for example, studies correlating unemployment rates with suicide rates. You can correlate that but it does not mean that unemployment leads to suicide at the individual level. The case in point for the autism epidemiological literature recently is all the claims made to connect the increased number of children with autism in the last 10 or 15 years with change in immunization practices, the mercury included and other things. You can produce these correlations, but you need to look at control studies. By control studies I mean the type of epidemiological studies that usually are referred to as either the case control study or the control study where you measure the individual exposure to a particular risk variable and try to estimate whether it increased the risk of the disease.
The control studies in the immunization studies have shown no association in the context where there was a correlation at the starting point. The hypotheses regarding pesticides and toxic environmental exposure have to be taken with a lot of caution. There needs to be evidence that is based on rigorously controlled epidemiological studies.
Recently, someone correlated the increased numbers of autism cases in California with the number of hours young children watch TV. There is now a hypothesis linking young children with autism to watching TV. Again, that is based on a fallacious correlation. There will be increasing numbers of such claims. It is very important that families and the scientific community look at epidemiological studies that are rigorously done as the mechanism to establish causation among populations.
Senator Fairbairn: Thank you all for taking the time to be here today. It is an extraordinary table we are sitting around and I feel as though I have gone back in time to early days in school, listening to such eloquent teaching from all of you on an extremely difficult subject.
On the question of how to get more young people involved in autism research and treatment, I was very pleased to hear that there is not a lack of interest on the part of students. That is encouraging.
Dr. Holden, of all the comments our witnesses have made throughout our hearings, the saddest one was your statement that those who suffer from this disability do not understand hurt or happiness.
Dr. Holden: They do feel hurt.
Senator Fairbairn: Your comment struck me because a few days ago we had a panel of four adults with autism. I thought they were very courageous to come here. One young man rather cheerfully told us not to worry about the difficulties he was having, that he would get along all right. They were so good in their presentations and in their responses, so I asked whether they shared with others that skill and the internal effort that they were putting into life. This young fellow, whom I talked to afterwards, said that he had got the point. He liked making his presentation and he particularly liked being on television. He was very open about telling us when he was having a little difficulty here. He told me afterwards that if he could keep on working at this and getting a little better, he would really like to get into television. It was a positive and forward-looking comment and he was in good spirits.
On the other hand, at the other end of the table there was a fellow who was having difficulty; it was a difficult session for him compared to the others, I think. I had a little chat with him afterwards and he blossomed a bit, saying that he kind of got off the rails answering that question while he was sitting at the table, but he said that he had been giving speeches to groups about what autism was all about. He said he really enjoyed doing that wished more people would ask him to.
Dr. Holden: Mostly right now we hear about families with young children who are desperate for services. We do not hear too often about families with adults, because we are concentrating on the early interventions.
Many children with ASD are like my brother was when he was young. My brother is perhaps one of the happiest people I know, but when he was young he hit his head against the wall constantly. He was self-abusive. He never hurt anyone else. He was very frustrated because he was trying desperately to say things. We learned when he was 48 that he has a hearing impairment. There is no excuse for our medical system to have failed my brother for 50 years; there really is no excuse for that.
I do not think this is atypical. We have heard that autism is heterogeneous. We understand that. However, we do not understand the real precipitating factors for autism in any of these cases, except when we know the specific genes that are associated with an autism spectrum disorder, and there are some.
With my brother, we did not know that there was hearing loss. With young children now, there are hearing assessments and auditory assessments to see whether or not they are even processing. My brother's problem was that he did not hear well and also he does not process well. Many kids with autism do not process language in the same typical way as other kids do. Therefore we have got to give them time. Even now, when my brother is quite verbal, he needs time when we are speaking to him. How many of us take the time with elderly people, let alone those with disabilities, to say something in a slow way so that they can follow what we are saying?
My brother will get frustrated, but he is also happy. He is glad to show people how he has gone from being totally illiterate three years ago to typing words now and telling us things he is interested in. He did it at Queen's University. I was never more proud of my brother. When he sat with me, he was the star. He was showing an audience of 150 people how he was learning how to spell words, from ``cat'' to ``Vancouver'' to ``Sechelt'' to ``Shania Twain,'' to whatever it was he wanted to talk about. He does that without the ability to understand language the way we do through phonics. Everything that he does is through his memory.
He is happy. He is very happy. If only all of us could experience, for five minutes, the joy that he experiences all day long. If only we could also understand the frustration that people with ASD feel when they are not understood. Part of the reason my brother needs one-on-one interaction is that there are people who do not understand him. When he goes to a day program and they do not understand him and he knows that other people do, despite his difficulty in articulating certain words, he cannot understand why that is. He is trying the same mechanism for everyone.
We need to appreciate the gifts they have and their ability to be happy. We also have to understand that many of these kids are suffering medical conditions that are not recognized. They may be acting out or having problems because they are in pain from unrecognized conditions. We must ask what is causing these behaviours. Is it because they just want to be naughty kids and a nuisance? No. There is a reason. They are either intellectually frustrated or medically compromised. All of these factors must be taken into account.
Yes, they experience pain. Yes, they experience love. My brother brings my mother tea every single night, and he realizes what it is that she needs. These kids are very emotional; they just do not display it the same way.
Ms. Fleming: I wanted to comment about the panellists you heard earlier this week, because over the last three years Autism Society Canada has worked hard to become more inclusive, and some of the disability activists have helped us to see that, because we have such broad needs in our community. Certainly Michelle Dawson, whom you have heard from, and others have helped us to understand that there is a need to be inclusive and to find a voice for people with autism around the table.
We began several years ago with the process of having an advisory committee of persons with ASDs. We met for the first time this September face to face; our board had a chance to meet. They are assisted by Dr. Kevin Stoddard who works with adolescents and adults with Asperger's syndrome and high-functioning individuals with autism. They came back with many recommendations for us. I did not take the time today to go through those.
Kristian Hooker is our youngest board member. He was one of the panellists you heard from the other day; he brought his mother. We can talk about the need for accommodation, which is partly what people with disabilities need. Mr. Hooker also chairs our advisory committee. You also heard from Brigitte Harrisson, who is probably one of the most high-functioning autistic people that you will meet. She is a social worker, provides training and does all kinds of educational work. She is run ragged in the province of Quebec but brings a lot of hope and information from an autistic point of view. Jason Oldford is also on our advisory committee.
It is important to recognize that a lot of work goes into allowing their inclusion. For some people perhaps it is not as difficult as for others, but we know that to include them in our society takes a long-term commitment and an ability to accommodate and to provide those services. We do not always have the money and budgets for our society and for other organizations.
I was very proud of those individuals and pleased that senators had a chance to see them, but you also need to know there are people who would not be able to do that. Those are high-functioning people and they are making a contribution. Mr. Hooker told me he was very pleased. He is 23 years old. He works in a store, and his goal was to become a cashier. He told me this week that he had actually been promoted to cashier dealing directly with the public.
There is hope. People with autism can participate fully in society.
The Chairman: What percentage of adults with autism do you think could do what the panel did the other day? Is it a small percentage or a large percentage?
Ms. Fleming: From what we know, I would say more than we think. There are more people with autism than we know about. They have not always been diagnosed. I hear from adults with autism who were diagnosed in their 30s, 40s and 50s; we know those people are in society functioning, perhaps well, perhaps less well. We do not know how many. We do not have any statistics.
Dr. Szatmari: We do have statistics on this. Dr. Bryson and I have been following a group of high-functioning people with autism spectrum disorder since they were four to six years of age and now they are 19 to 21 years of age. There is a group of young adults with Asperger's syndrome and a group with higher-functioning autism. About 20 per cent of the individuals with Asperger's syndrome are scoring in the typical range when it comes to social skills and communication skills. The individuals with autism are scoring about 5 per cent in the typical range when it comes to social and communication skills. Even so, they still need support and help in going to school, getting a job, living independently. There are other things that they need.
The Chairman: There are so many different areas we must still explore. We know that the provincial role is as the deliverer of health care services and social services. That is not to say there cannot be a federal role. We will talk about that this afternoon. Certainly the delivery of programs and services is at the provincial level.
There is a lot of variance in how the provinces handle this. Some of them look more at these programs in the social service area, others in the health area. What are your thoughts and experiences are on that, perhaps from the perspective of your own province? Which province do you think is closest to getting it right?
Regarding treatment, the biggest discussion is about ABA and IBI. We have heard various comments about how that treatment is. Some say there really is not anything else that is evidence-based that is sufficient to work on; others say there are variations for everyone. There are so many individual cases and ABA may work for some but not for all. In developing the national autism strategy, how much should we focus on those treatments?
Dr. Bryson: First, ABA really refers to a set of principles: the principles of applied behaviour analysis or principles of learning. Those principles can be applied in a variety of ways. The traditional way is using what is called discrete trial learning, where a child sits down at a table with a therapist and the therapist drives everything that goes on. It does not matter what the child is doing in terms of their interest. There is an agenda or a curriculum, and the child is put through masses of trials learning things like colours, shapes, size.
That is one application of the principles of learning, or the principles of applied behaviour analysis. It has probably received the most press, but it is only one application. I fear that many of the adults you have heard from have expressed concern about this very traditional and, to some extent, rigid way of applying ABA principles.
I do want to say that there are other ways of using the principles of learning. The principles of learning are a scientific fact. We do things that make us feel good. We do things that result in positive consequences rather than negative consequences. Those are facts. We are always using them, whether we are aware of it or not, when we interact with people.
The set of principles can be applied in other ways. It is important that you know that, because people have come to equate ABA with discrete trial learning. That is only one application. In fact, there is much evidence now in the literature for the efficacy of applying these principles in other ways, in naturalistic contexts as children learn, and using very positive techniques, such as capitalizing on the children's inherent motivation, paying more attention to what the child is saying to us and capitalizing on what makes them feel good and happy. We all know that we learn better under those circumstances.
I think it is not trivial at all but very important that the people around this table understand that point. Much of the response you have heard is to what I would call traditional and to some extent somewhat outdated application of ABA principles. There has been concern even among the leading behaviourists in the field that we need to use these principles in a more positive way in naturalistic circumstances.
[Translation]
Dr. Mottron: I believe that, despite the very useful warnings Ms. Bryson has just mentioned, it is always important to recognize that, based upon present day knowledge, which will be determining in the allocation of monies, there is no solid proof relating to the duration of interventions and results at an adult age. I believe that that should not be ignored.
It would perhaps be of no importance if the amounts of money at play were not what they are; but given that when one decides to move to early intervention nothing is spared — people ask for 30 hours or more of interventions — the flow of funds is absolutely unbelievable. This is why I insist so much on the absence of any scientific work that could be relied upon for these important budgetary choices that must be made now.
[English]
Ms. Ivanco: You asked a question about treatment. I would like to bring up the issue of semantics. If you have an infection, a treatment is an antibiotic that gets rid of the infection. We do not have a real treatment for ASD; we have interventions. That semantic issue is important to remember because we do have a bigger goal of potentially doing treatments. ABA and some of the other programs are fabulous because of the principles, as Dr. Bryson suggested. However, the semantic issue is important to remember.
Dr. Holden: It is also true that we would not withhold chemotherapy from a child with leukemia because we are not really sure how that will affect him or her 30 years from now, and we have done that with so many different types of treatment. The goal is always to get a child past a certain critical age. That may mean that you are teaching some language to those who do not have language; we cannot really withhold that. I do totally understand where Dr. Mottron is coming from, that there are many individuals who are very high functioning who want to remain themselves, as individuals. I do not think that anyone wants to take that away from anyone. There are some qualities in autism that are absolutely wonderful. It is not those that anyone wants to eliminate, not for one moment. However, there are other complications that one gets as a result, such as the self-abuse that happens because they are frustrated and hitting their heads and probably causing a lot of other damage. That is what we want to eliminate, so for example we are interested in ensuring that a child who does not have language gets language. That is important to me.
Mr. Yu: The question of whether ABA is effective has been one of the most controversial questions. The original study by Dr. Lovaas, published in 1987, reported that a fair number of children — nine out of 19, if I recall correctly — achieved normal or near normal IQ after 40 hours a week of intervention over more than two years.
Since then, a number of evaluations have been published in peer-reviewed journals. The proportion of success reported in subsequent evaluations varied across studies. None approached the original Lovaas study in terms of the number or proportion of children who showed large gains, moderate gains and small gains. However, there are a number of differences in the subsequent evaluations. None approached the original study in terms of intensity, as in number of hours per week of treatment. Some of them did not approach in terms of duration of the treatment, as in the number of years the children received treatment.
Collectively, however, the evidence is compelling. Certainly, every study has some weaknesses. All the scientists around this table know that we can pick up any refereed published paper and find weaknesses. You need to look at the body of literature that has been building. Collectively, the evidence is compelling. It gives us enough to work with, until we get better, but there are sufficient benefits for children now that I think we can use.
Dr. Szatmari: I would like to respond to your question about variability across provinces. There is enormous variability across provinces from Newfoundland to British Columbia. In my opinion, no one has it completely right, but everyone has it kind of right. If everyone got together and discussed these variations, a consensus could be arrived at, and the average might be something that could be implemented across the country.
There are three ways that I understand that the provinces are different. First, we are just talking about IBI, which is intensive behavioural intervention, in the early years, which is one form of ABA, the distinction that Dr. Bryson made. One difference has to do with eligibility. Who is eligible? In Ontario, only those at the severe end of the spectrum are eligible for early IBI. As a person who has worked in the field for 25 years, I have no clue what the severe end of the spectrum is, because everyone is severely impaired. It does not make sense to me. It is difficult.
Second, in other provinces, support is only for those with autism. The distinction between autism, pervasive developmental disorder not otherwise specified, PDD-NOS, and Asperger's syndrome is an academic one. The academics cannot agree. Therefore, that does not make sense to me. Others have eligibilities for the entire spectrum of children with ASD. That is one variation.
The second variation has to do with whether interventions are provided by a regional centre or whether funding is given to the family and the family buys available services. There are very different approaches to how that is done. In Ontario, services are provided only by nine regional centres across the province. In Alberta and B.C., the funds are given to the family and the family has to shop around, which is totally overwhelming for families. The diagnosis itself is overwhelming. Trying to find somebody to provide the services is overwhelming as well.
That leads to evidence-based versus non-evidence-based interventions. In those provinces where it is possible to shop around for the services, people are being encouraged to obtain services that are not evidence-based at all; that is, there is absolutely no evidence that they are effective, worthwhile or cost effective in any circumstance.
Ms. Perry: I would like to reiterate some of these points. There certainly are varieties of applied behavioural procedures that fall under the umbrella of intensive behavioural intervention. That is also an evolving body of skills.
I argue that there is pretty strong evidence for the efficacy of IBI for the preschool years, but there is not very much evidence one way or the other about long-term use. Even in the high-quality small studies, the outcomes are variable. It is important to remember that, although it is the best we have in many respects, it is not a panacea.
Efficacy studies determine whether something can be shown to work under relatively ideal conditions. Those are usually small studies like the Lovaas study to which Dr. Yu referred, where the children are selected and the therapists are selected and supervised in a particular way. There is a lot of control over many variables. In those efficacy studies, high-intensity IBI has been shown to be more effective than low intensity for control groups that received a small amount of intervention and also more effective than eclectic forms of intervention that children received in the community. There have now been two good quality studies showing that children had better outcomes from IBI compared to an equivalent amount of a high quality, special education-based approach. That is what we can say about the efficacy of IBI. However, whether it works in the real world under the typical conditions in which it is implemented is a completely different question.
We know very little about the effectiveness of IBI in the real world. A survey has recently been done to find out what specific techniques private providers are using throughout North America. We know very little about what people are doing, let alone how effective it is.
Therefore, less is known. Of the few published studies on effectiveness that are not affiliated with a model program or an academic centre, the evidence suggests that it is probably still good, but weaker; that is, children make some gains but they are not as dramatic. It is important that research is funded to study IBI is being implemented in Canada.
We are starting to do some of these studies in Ontario. There is still some methodological work to be done in terms of research designs, because that kind of research is messier and less conclusive. The file review study that I just completed suggested that outcomes are variable, that about 75 per cent of the children were showing positive measurable gains, that about 25 per cent were showing very substantial gains, but about 25 per cent were not showing gains.
It is not a panacea for all children, and it is important to remember that. Continuing to provide that high-quality, high-intensity, expensive intervention for a very long time is not necessarily going to be any more effective. It is the most effective thing we can do for young children that we know of so far, but it is not the be all and end all.
Dr. Zwaigenbaum: I would like to follow up on the issue of differences across the country and whether there is a national role. There are differences in eligibility for services, and there are also differences in terms of the high-quality, evidence-based and effective services that are being developed and delivered.
We heard examples this morning from a number of areas of the country of innovative programs that have been successful. In addition to needing an average, that is, basic standards and principles around intervention, we need to make a much more concerted effort to share our successes and innovations and come up with something that is greater than the sum of its parts.
I would like to reinforce why it is so important that we have a national perspective. I believe the committee has heard on a number of occasions about families moving from one area of the country to another. There has been much discussion about how those are very complex decisions. It is not clear that families will necessarily receive a better set of interventions in one province versus another. However, it does underline the urgency of this issue. I cannot think of any other condition in which families move from one province to another because of a perceived difference in services. Although we cannot say that one province is necessarily better than another, the perception of the needs and the urgency of it should motivate us to move forward.
Dr. Fombonne: It is important to realize that 10 or 15 years ago we had no efficacy studies in the field of psychosocial interventions, and now we have replicated studies that show efficacy. It is true that not all children benefit from these interventions, but that is not specific to our field. In medicine, when we prescribe an antidepressant, the response rate is 70 per cent. Had we not done these studies, we would not be in a position to treat depression. This is not specific to autism or ABA; it is just a general statement.
When you asked the questions about comparing provinces, I realized that I am concerned about differences within my own province in access to treatment by different social classes. The lack of resources is about to create a situation of social inequality in access to treatment.
My patients in Montreal who are from a lower social class go on the waiting list, where they wait and wait. My wealthy patients immediately access private services. They remortgage their houses, because they have a house to remortgage. I see that constantly in addition to the difficulty of serving children who live in rural areas. There is an untold story about different access to treatment that might make a difference, based on social class, although I have no data on that.
The Chairman: That is an interesting point.
We will take a lunch break at this time. After lunch we want to focus on the way ahead. I would like you all to put on a senator hat and tell us what you would recommend if you were part of this committee. What needs to be part of a national autism strategy? What is the federal role in this, and how can the federal government play a lead role in working toward some of the solutions to many of the challenges that you have raised today? There are many.
The committee recessed for lunch.
The Chairman: This afternoon, we must end at 3 p.m. because some of us have flights to catch. That is our deadline. Let us focus on the way ahead. Your agenda notes some of the issues to be addressed.
This will be the last time the committee interacts with people with respect to autism. After this we will interact with ourselves and our researchers and develop some recommendations.
I think we are headed towards a national autism strategy. We have noted that the federal government has developed strategies in other areas, such as cancer and diabetes, even though we know that the delivery of those services is at the provincial level.
There are ways in which the federal government can be involved. I think we are inclined to do that. One suggestion that has been made by some people, which I think we are probably not inclined to do, although some committee members might disagree, is to ask for an amendment to the Canada Health Act by including autism. There is no disorder or disease of any kind in the Canada Health Act.
We are hearing from many people about a desire to do something profound and effective. Maybe they think that might be the way to accomplish it. That is probably not realistic, but a national autism strategy is realistic. In fact, a motion in the House of Commons was passed just the other day to the effect that government should develop a national autism strategy.
Thus far, we have heard a little bit from the government. I have to watch I do not become partisan. Tony Clement, the Health Minister, said a few things. One of his recommendations was a proposed symposium in 2007. He made a few other recommendations. We also anticipate receiving a paper from him on this subject over the next few days. We might get a further idea of what the Department of Health is thinking.
We are in a position to move this agenda forward with the government by indicating what we think needs to be done.
Many issues could come under the framework of a national autism strategy. This is where we need your input. What should we recommend?
We talked today about training and the lack of professionals in certain disciplines, and we heard about the importance of early intervention. Much was said about the prevalence of autism and the statistics.
This morning you told us much about the autism situation in Canada. Now we must identify the recommendations we should make. If you recall, this morning I asked you to put on a Senate hat and ask yourselves what you would do in our position.
Senator Keon: We have not received adequate feedback on the psychopharmacology of autism and the psychopharmacological management of autistic children. That aspect should be in our report. Dr. Wendy Edwards alluded to it briefly this morning, but that issue had not hit the radar screen of previous witnesses. I thought you might be interested in a bit of discussion as to whether it should go into our plan. In my opinion, it should.
The Chairman: Do you want to separate that discussion out, or should I ask the witnesses to include it in their comments concerning the way ahead?
Senator Keon: Perhaps you could. You are the chair.
The Chairman: That is fair enough. Is there anything else, senators, that you would like comments on?
Senator Cook: Because the minister said the issue of ASD has been referred to this committee, I would like some input from you around the table on the five bullets that were in his statement.
He said we would sponsor an ASD stakeholders' symposium in 2007. That is fine.
He said to begin exploring the establishment of a research chair. Should that be a stand-alone chair? Should it be in Health Canada? Where should it be? I feel strongly that it should be connected.
He is talking about launching a consultation process and about the feasibility of developing a surveillance program. Are you along that pathway? How does that fit?
He is talking about creating a dedicated web page on the Health Canada website. I heard a couple of you this morning say that some information on the web is not accurate. I want to know where that information is coming from.
The minister talks about designating the Health Policy Branch of Health Canada as the lead at the federal health portfolio level. I would like to hear your comments on that as well.
I would like to hear your thoughts on funding. How do you see the funding for a national strategy? Should it be stand-alone? What is the time frame? Should it be three years or five years?
That is the commitment of the minister. I would like to hear what the experts have to say about how it fits in with moving forward. I do not pretend to know or understand the scientific data I heard this morning. I do know we have to make a path by walking it. Are there many stumbling blocks on this road that we should address as we move forward with the strategy?
The Chairman: Those are helpful supplementary questions that Senators Cook and Keon have put together with what I asked you.
[Translation]
Mr. Giroux: I would like to put to you some thoughts on possible and, indeed, necessary elements of an eventual national autism strategy. I would draw your attention to page 13, slide 25, of the brief I distributed this morning, and in which I list those elements that must urgently and unavoidably be considered.
The first question a national strategy must provide answers to is access to diagnostic services, since they are the entry to treatment, and at the same time access to support services, because there are hundreds of Canadian families enduring unbearable stress because of the presence in their midst of autistic children.
My first recommendation is that the national strategy provide the means to shorten the wait times for access to diagnostic services and to increase the support and services offered parents.
The second element would be to establish or promote a heightening of the intensity and of the quality of intensive behavioural intervention programs, which leave much to be desired wherever you look. I will speak only about Quebec; familiar as I am with the situation in Quebec, I can tell you that we are below the minimum standards recommended by applied behaviour analysis experts.
For example, in Quebec, 550 children are registered with the public intensive behavioural intervention network; they receive, on average, 14 hours of intervention per week, despite the fact that the government's official policy is to provide, and I quote ``a minimum of 20 hours.''
We have seen develop, in a large number of facilities, an ill-advised practice whereby intensive behavioural intervention is amalgamated with various other approaches. I believe this situation should be corrected and that practitioners of this type of intervention should be reminded that it has been defined, scientifically validated, and that they must act in accordance with the requirements of the standards developed through this research. There is therefore a need to carry out this program upgrade and to increase the exposure times of children.
Further on in the document I provided I present some cost estimations. I based my study on official data and Dr. Fombonne's prevalence rates, and I believe that if we wished to immediately provide to all ASD children in Canada aged two to six years the intensive behavioural intervention they need, there would have to be an immediate injection of between 25 million and 350 million dollars. The provinces are already making an effort, but they do not possess these additional financial resources.
Furthermore, the availability of financial resources would resolve nothing, in the sense that there is a lack of training, a lack of qualified workers. That is the target of another one of my recommendations regarding the national autism strategy.
We should establish, in all the provinces and territories of Canada, centres of excellence, demonstration centres and research centres in order to train, develop and teach, so that all of the players, in all of the situations, know how to practice intensive behavioural intervention in accordance with the most promising, most productive and most effective standards.
There is a real problem there, and I believe that it is generalized across all of the provinces and territories of Canada. I suggested that, within the national autism strategy, the federal government facilitate, through driver investments, the establishment of such centres of exemplary practices by calling upon Canadian universities to take on these initiatives, while guaranteeing them the necessary grants for the creation and operation of these centres.
I would add that after having responded to this first set of urgent needs, the strategy would also have to include access to applied behavioural analysis resources for autistic individuals older than seven or eight years of age.
I also believe that the education system has certain deficiencies in this area. Today's education system and school authorities — especially in Quebec — offer support services to children diagnosed with pervasive developmental disorders. This support is given on the basis of approximately 15 hours per week. During these 15 hours, someone accompanies the child in class and acts as an interface between the teacher, the group and the program. However, this intervener does not act in a systematic way and in accordance with the rather beneficial methods of applied behavioural analysis. I am not talking here of intensive behavioural interventions of the Lovaas type. We must move towards different, more genetic procedures that are being put forward by the applied behavioural analysis discipline.
The same goes for autistic adults. There should be established a national strategy so as to help this clientele which is among the most ignored. My brief gives an outline of the life of an autistic adult living in residence in Quebec. It is a true case. This reality is very distressing. I am not talking about high functioning autistic people or individuals with Asperger's syndrome who, with some assistance, do manage to function. I am talking of Kanner-type autistic people, classical autistic individuals, who do not wind up in institutions but in residences. These residences are small, reconstituted institutions where the autistic do not receive the stimulation that might help them maintain the skills they have acquired, nor the appropriate and professional help they need to develop.
We heard this morning that it is possible for an autistic adult to learn to speak at the age of 50. One must therefore never give up.
I believe that a national strategy should be able to take into account the fact that autistic adults are able to develop. It should also ensure an upgrading of the quality of applied behaviour analysis intervention.
[English]
The Chairman: Senator Munson, before you came in, we charged the table with our thoughts about what we would hear them say about the way ahead and what should be in a national autism strategy. Do you have something to put on the floor? We are going around on the general issues, not on specific questions at this point in time.
Senator Munson: Two small but important points. I wish to deal with Mr. Clement's statement, ``begin exploring the establishment of a research chair.'' What in the name of heaven are we talking about? ``Begin exploring?'' It should be that we will establish a research chair focusing on effective treatment. That is my point of view. I am not playing politics — this is too important.
Either we pay now or we pay later. I would like the rectangular table to explore that. I am 60 years old. What will happen with our baby boomers in another seven or eight years? How do we pay for that? We will work that out later. It is pay now or pay later.
The Chairman: Colleagues, when the comments or suggestions are being made, if you need to ask a question for clarification, let me know.
[Translation]
Dr. Mottron: The suggestion I would like to put to senators is completely counter to what has just been proposed by the previous speaker. It is, on the contrary, a matter of rebalancing the existing resources between adults and children, taking into account the inequality of the targeted groups — there are in fact three adults per child. This rebalancing would involve, more particularly, a sizeable increase in the resources and educators available in support of adults with regard to access to employment and autonomous living. I support the creation of jobs and sheltered housing — these would be jobs in areas relating to data processing, at which the autistic excel.
Let us talk now about the chair that would be devoted to effective treatment. I believe that it would be just as unhealthy for effective treatment to be interpreted as a given type of treatment as if there were a chair of pharmacology devoted exclusively to aspirin.
[English]
Dr. Zwaigenbaum: Taking direction from Senator Cook and Senator Munson, I have a few comments about Tony Clement's initial statement. A number of us probably feel that this is a good start in some respects, but not by itself a national autism strategy.
First, on the stakeholder symposium, it is clear from the comments earlier today that we must be careful about not reinventing the wheel. We need to acknowledge the efforts that have been made for example in the development of the white paper and through the Canadian Autism Intervention Research Network's meeting with a group of stakeholders to develop a strategy. I do not know as much about the activities of ASD-CARC but I wonder whether they have documents to contribute in that respect. If we went to a symposium, it would have to have clear goals. Ideally, I would like to see a symposium attached to specific outcomes, for example the establishment of a specific funding envelope for autism and doing some final consultations with stakeholders around mechanisms and specific priorities. It could take inspiration from efforts through the National Institutes of Health in the U.S. to establish a specific centre or network programs that identify specific priorities, so that we can actually make some changes in the types of autism research that are done.
Second, establishing a research chair is in principle a good idea. However, it is important that we do not have a chair without a table in an empty house. We heard already about the importance of training at the grassroots level in every type of professional faculty that touches autism. We have also heard about different funding mechanisms. The reality is that none of them is an appropriate mechanism for funding intervention research either for adults or for young children in terms of the resources that are available and in terms of the sensitivities of the scientific communities that review these applications.
I would love to see that prioritized so that we can move from talking about the gaps in evidence in different points of view and be able to base our conversation on finer-grained evidence around effective intervention for children and adults and helping identify what really makes a difference for individual families.
I will keep my comments to that. The symposium must not simply be a forum for exchange of information, but rather something that is attached to specific goals and, ideally, specific outcomes in terms of transforming the landscape in autism research.
Ms. Fleming: I wanted to respond to the comments Senator Cook made about the press release and the announcement that Minister Clement made a couple of weeks ago. Not to engage in any partisan politics myself, I guess we could say that as a national charity we have been working for the last five years quite intently, as much as our resources allow, to educate MPs and senators to bring forward what we believe is a national autism strategy. We have refined that strategy with the input of many of our partners over the years. There are parents and others sitting here in the visitors' gallery who have also done their work on that, so I think it is a very strong movement from the autism community and the stakeholders.
I could read to you what Autism Society Canada believes, and I did touch on that in my presentation. I do think that we have had the door opened for us; this is the first time in the years that I have been working that I have heard a minister say that something needs to be done about autism. We know that much more needs to be done. This was a baby step. The minister said it himself. It is everyone's job to ensure that we get the national, comprehensive program we need.
Regarding the stakeholder symposium, I was there when the minister made his remarks and I did not feel that he was limiting us to simply having an exchange of information. In fact, Autism Society Canada would like to see a first ministers conference of federal, provincial and territorial ministers, and not just the ministers of health. We will continue to push for that in all of our meetings with health officials and the minister. As we have heard, autism does not simply sit in the Department of Health; it impacts education, social services, law, the justice department, and tax considerations, which we have not even talked about today. Senator Callbeck has previously raised the question of tax implications for people.
Many things need to be done. I think it is a good step, but it is only a step. I do not think it deals with all the issues. We do not want to see a comprehensive strategy fall off the table in exchange for a few things.
Regarding Senator Munson's comment about establishing a chair in autism, I think the colleagues at this table are in fact the researchers. I know from my conversations with them that some are not as strongly in support of having a chair, particularly, as Dr. Zwaigenbaum said, if there is no table and food and clothing to go with that. Perhaps we will be able to encourage the minister to do more consultation and develop more of a collaborative approach to what we actually need.
The last thing I wanted to talk about is lifespan. I know that your study has been about autism treatment. Of course, treatment is a very big word and under it we see supports and accommodations. We do think that it is important to begin the process; this is not year ten of our strategy. Our colleagues in the cancer field will tell you it took them this many years to develop a comprehensive strategy. We are at year one, so we need to celebrate at least that we are here at year one and we need to ask what the next few years will bring. Our wish would be that we move on to the next step.
Support for treatment is of course essential. Autism Society Canada looks at the lifespan issues, but that does not mean that we do not believe that we need to start with the children who have been diagnosed. We have a huge task to come up with a strategy. It is wonderful that this Senate committee is investigating autism. Now we need to hold the minister and the government to their promise and push them. That is where Autism Society Canada is coming from: we want to work with government, MPs and senators, but let us get working.
The Chairman: Yes. We do have your brief about a national autism strategy, so we have quite a bit of information already.
Dr. Lewis: I would like to comment on Tony Clement's agenda particularly as it relates to the development of a research chair. Although that is a good idea, I think it needs to be different in how it is applied.
Speaking as an autism researcher in the field, I do not believe we need to create any more silos of research. That speaks to what Dr. Zwaigenbaum was saying as well. We need a mechanism and maybe a broader or higher funding approach towards developing more crosscutting interdisciplinary research across different individuals.
The very competitive nature of how autism research is allocated amongst all of us creates unnecessary divides that could perhaps be overcome so that we could come together as a group to become more than the sum of our individual parts. I think it is very important to support that crosscutting research approach as opposed to centreing research in any one institution or with any one individual. We all have a stake in this. Perhaps we really need several research chairs for it to be workable.
As far as funding for that goes, CIHR has provided $15 million worth of funding since 2000. That is over nearly seven years, and it does not come close to what is necessary. I and others around this table just participated in a meeting in Washington of the National Institute of Child Health and Human Development, NICHD, which allocated $200 million for one year of research, now $1 billion over five years. How do we come close to competing with that kind of research and provide a Canadian solution to the Canadian autism problem? We do not necessarily want to be the ones doing applied research for what the Americans find. We want to find our own solutions.
Dr. Szatmari: I think you are finding some consensus building around the table, which is great. I too agree, first of all, about the funding and the chair. I think Canada already has around this table five chairs who predominantly do autism research. That is quite reasonable if you look at all the chairs in Canada that are related to children's mental health: they are few and far between.
Learning from our American friends and colleagues, I think the concept of centres of excellence and networks of scientists working together is the way to go. In Canada we make progress by cooperating with each other. Americans cannot cooperate; they compete too much. Canadians are much better at working together and collaborating. That was our experience with the genetics project, where we learned that by working together we could take an international lead. That is very exciting.
Centres of excellence should be doing a range of research and treatment. They should be both research centres and treatment centres together: the integration of basic science with clinical research in the same centre leads to the most exciting work, including psychopharmacology. There is a role for psychopharmacology; we do not know enough about it. As far as I am aware, there is evidence only for two medications' being effective on the basis of randomized trials, but there is a lot of misuse of medication in the community, and that needs to be addressed.
We also need to develop training. So many of our clinical scientists are going to the United States for training and so many of them end up in debt through graduate school, through medical school, that they cannot stay here. It is very difficult for them to get university faculty positions, to apply all their training, and so they go to the United States. We must find means of bringing them back to Canada.
I would also like to make a pitch for a national longitudinal study of children and youth in the autism field. Statistics Canada has been conducting the National Longitudinal Survey of Children and Youth on the general population for a number of years and has done an excellent job. I think we have an opportunity, using that same methodology, to follow a national cohort of kids with autism from diagnosis to adulthood. That would be incredibly exciting. No other country has the methodology to do that sort of study.
I feel a symposium would be worthwhile if, as Dr. Zwaigenbaum indicated, the reasons for it and the objectives are very clear. One important objective is to share the information about the variability in services. The Canadian Autism Intervention Research Network conferences that we held over a five-year period were useful for bringing people together. However, we had a hard time getting the provincial policy-makers to attend. They could not come, for one reason or another. Many parents, scientists and clinicians came, but the people who in some ways most needed to be there did not come. If the prospect of a national strategy could bring to the table the policy-makers and the first ministers, that would be very exciting.
A single symposium is not good enough because that only gets the ball rolling. Multiple symposiums are needed to see the development of concepts and their dissemination into the community.
In regards to the website, we have done a lot of research to find out what is it that parents need to know. They need to have information from a credible source. Unfortunately, they tend not to believe governments. They do not government as a credible source. They see scientists as a credible source. Important information has to come from an arm's length organization. As much as I respect and admire Health Canada's work, I do not think it will be seen as a credible source of information by the parents of people with autism.
A web page that goes up today will be out of date within six months. An autism website would have to be brought up to date constantly with new information, because the field is changing week by week. If the National Post reports that watching television causes autism, that website has to provide a definitive statement about the evidence for that. You cannot just leave it there. It has to be brought up to date and that is not cheap. It is costly to do that.
Senator Keon: I want to go back to psychopharmacology. You talked about psychopharmacological therapies, but it concerns me that we have had no input at all as to the chemistry of the brain in this condition, normal or abnormal. I wonder if we are not missing something major here that should be considered.
Dr. Szatmari: Clearly, the brains of these children are abnormal. They are different than they ought to be in their developmental progress. We do know that neurotransmitters are differentially distributed in the brains of children with autism from the way they are in the typical population. We know that serotonin, for example, must be an important neurotransmitter in the development of this disorder. The medication we have that addresses serotonin does not seem to work all that well for the most part, and we do not quite understand that. Much work needs to be done. An important message is that people are using medication inappropriately for too long a period and not taking account of potential side effects.
Senator Keon: As we make some recommendations about the research involved, in addition to genetic research and epidemiological research and behavioral research, would you advise that we recommend research into the biochemistry of the brain?
Dr. Szatmari: Absolutely. I include that in my category of basic science research: research into the neurotransmitters, post-mortem studies of neurotransmitters, imaging studies. It is very difficult to do PET scans, or positron emission tomography, in Canada now with neurotransmitters because of the rules. We need those kinds of studies. Imaging studies have a lot of potential when it comes to biochemistry, and we need to do studies of medications that might target particular symptoms. The key is that medications do not treat the disorder but they do target certain symptoms that can be disabling and handicapping, and we need to do more research on that to develop newer medications.
Dr. Edwards: I want to comment on pharmacology and psychopharmacology. Something forgotten by doctors, by teachers and by the community in general is that once a child is labeled as autistic people stop looking at the child as a whole. We need medical centres of excellence, not just centres of excellence for research and not just centres of excellence for intervention. Then the medical centres of excellence would come up with the treatments.
There are two reasons for that. The first is that we are missing things big time. Just listen to Dr. Holden's story. That got missed for years and years. I have cases of patients who are self-mutilators; one child broke his mother's nose; kids bang their heads on the walls or self-induce vomiting. They are not doing those behaviour anymore. We diagnose migraine headaches; the child is on medication and is no longer violent in school. In relation to colitis, children are on appropriate medication and can go to their ABA programs and learn. It is important to think about what medical conditions are associated with these children. We know there are all these genes involved. They must do something else more than just affect how their brains are developing. Medical things are happening too.
The second reason to support medical centres of excellence is what Dr. Szatmari said, which is to support the medical research. There is good research out there. I already mentioned the University of Western Ontario and Dr. Derrick MacFabe. The research out there now is not specific for a treatment. They are not saying if you give this, it will fix autism. However, there is research that indicates that medical things are happening in these children.
For example, there are cytokines; there are markers of inflammation in the brains of these children that they are finding in autopsies. We know of Dr. Martha Herbert's studies about sizes of brains at different times of development in children. Why? Why are the glial cells over-activated? What is going on with these kids? We may not find research for the actual treatment, but if we find research to explain these medical things we may be able to develop treatments, so we need to support that.
Some of the research that is emerging, and I point specifically to Dr. MacFabe's work, is starting to support the anecdotal measures that some of the parents have been taking, myself included. Dr. MacFabe's research is starting to explain perhaps why the gluten free casein free diet might work for a subset of autistics; why it might make things better for them.
Psychiatric drugs given to dampen behaviors are not necessarily doing a child any good. They may be dampening behaviors, but they may also be masking what is really going on. Many of us took that oath about first doing no harm. It is a problem to give a medication to dampen something.
There are roles for medications. There are roles for psychopharmacology. Dr. Bryson stated that. Some people with autism have depression and they feel better when we treat them for depression or anxiety, but how can we diagnose those conditions if they are not up to their medical, optimal best so that they can explain to us what is going on, or not getting the treatment or the interventions so that they can start talking to us?
Dr. Holden: On the issue of the research chair, I agree with a number of the comments that have been made. We have a serious problem in Canada: absolutely insufficient funds for any kind of research. You are taking away money from the researchers whom you have been supporting for a long time and our grants are being cut. That means that all of those dollars that have gone into training us are not being used. We are unable to carry out the research simply because there is no money available.
You have a huge number of excellent researchers in this room, and others who are not here today are also carrying out autism research and doing a great job, but they cannot do it without support. You have to be able to give us some targeted money. I will fight for research money that goes to all researchers, because without other researchers doing work in apparently unrelated areas, you will not get all the answers that you need. We do not know where the answers will come from. If we did, we would not do all of this various research.
As has already been pointed out, more linkages would be strong and powerful. Two autism training programs in Canada cover a large number of researchers and clinicians who are doing their best to train the next generation, but there are researchers who are not involved in those training programs. If we could expand those training programs and create some cross-linkages, we could do a bang-up job of spreading the wealth of brainpower we have in this room to the next generation. We need to support them.
The funding will disappear very soon for the two training programs currently supported by CIHR and Autism Speaks. Whether there will be one program or not, we do not know. Why should we cut in half the programs that are already not able to train all of the people we need? Instead we should enhance them, encourage new researchers to come into training programs and create linkages between the programs so that we strengthen both of them.
The same is true for surveillance. We have a number of epidemiological studies going on using different strategies. There is no reason we cannot plan together how to make this work across all of the researchers and bring it all together.
I have also been involved in research on intellectual disabilities. It is important to recognize that if there is a face-to- face symposium in 2007, and perhaps others afterwards, there will not be many people around that table. There will not be enough money to have the number of people that should be there. We have to have webcasts. We need to invite specific people. We need to have workshops and other ways to involve the rest of the population. Remember the training and the work that was involved in getting some of those speakers with autism to come to this meeting and talk. It takes weeks of preparation for many of them. Will we have a symposium where people will speak spontaneously? It will not happen for many of those who have the words we need to hear. We need to be able to give them time to say the things they need to say, and we also need to consider the fact that not everyone will be verbal or able to write their answers. We need to involve a broad range of people, including teachers and everyone else who is involved, to ensure that we come up with a national strategy that will be representative of everyone.
As Dr. Szatmari and others have pointed out, you must keep web pages up to date, but we need more than that. We need something that is interactive. We have been trying to involve people for example by putting out a questionnaire or a survey and seeking answers from a large number of people. We did something that shook me up completely. When the study came out about older dads having a higher risk for having a child with autism, we put out a really simple questionnaire to people. In less than five days we got 1000 responses from all over the place. That is enormous participation. We could track where responses came from, and we had some from Argentina, even though none of the people we had normally involved in our research were from Argentina. We must embrace technology for the various way one can get lots of information.
Regarding treatment, are any of you aware of Virtual Expert Clinics, a Canadian company that has been devising an online treatment guidance protocol? It is not intended to take over from the therapists. However, families are on waiting lists and do not know what to get from the Internet and what sorts of measures they should be spending their time on. Parents think, ``If I do 30 minutes of this and 15 minutes of that and follow up with this, maybe at least I will not be losing out. I will try everything I possibly can, because I do not want to lose my child,'' which is of course what everyone is talking about and what they hear. It does not matter how often we tell parents they will not lose their child, they still hear it.
We must look at technologies that can enhance our work, give us some direction and help out. These kids respond to technology. Put that together with the well-trained therapists who had all of the guidance from the experts around the table, and I really think we can have an incredible system here.
I feel like a preacher.
The Chairman: The responses are getting more passionate. That is good.
Senator Munson: Dr. Holden, I am getting your message from everyone regarding the establishment of research centres rather than a chair. That message is loud and clear.
Why is this funding disappearing soon?
Dr. Holden: We compete for funding with research in many different areas. If our grant is in the 17 per cent or 10 per cent that is not going to be funded next time, our research dies. It dies because we cannot sustain it. That is true for everyone doing research. We have to be able to count on something over time, but you are cutting funding. You are cutting funding to CIHR dramatically. That is not helping anyone. Those cuts will hurt all researchers, not only us. I am not saying say that funding should not be competitive, because it should be competitive; however, we need more dollars at the table.
Dr. Zwaigenbaum: I want to follow up on Dr. Holden's response to that question. If I understood, you were also asking about the autism research training programs. Is that correct? In fact, for me, this is one of the most wonderful initiatives that we have had in Canada to develop the next generation of researchers, but the original funding was for six years for each of these programs. We are on our last cohort of students now. Unless we have a commitment to renew funding for these programs, they will disappear.
Dr. Scherer: One has to be very careful of terminology. CIHR's funding has not been cut. That question keeps coming up. Maybe I will come back to that in a moment.
On the issue of the research chairs and the workshops, I agree in principle with what my colleagues have said, but we have to think practically. In the current environment, the government has not shown yet an interest in increasing funding, but they have not cut the funding levels to any of the agencies, as far as I know. To be practical, you have to take the message that they have given you. They have offered a chair. My interpretation of the message was that the chair should be a person who will actually lead the cause of the national initiative to put things together. Every chair comes with research funds, so you tell them how much the chair needs to pull this off. They might want to hear $1 million, but maybe you should tell them $20 million. I am not sure whether that will get you kicked out of the room.
Senator Munson: There is a $13 billion surplus.
Dr. Scherer: I sit on many other boards and committees, and all of the agencies are going back to the government. They have offered this leaf and branch, and I think you need to take it and then move quickly to identify a mechanism to institute the chair. I would strongly recommend you use a peer review type system that may already be established through an agency like CIHR, for example, and identify an individual with the connections and the fire in their stomach who will actually pull this initiative off.
The Chairman: Dr. Bryson, as part of your commentary this morning you said something about learning from model programs, which I understood to be international programs or perhaps model programs in other places, since we have that established there are no great models in Canada.
Dr. Bryson: If we look to the U.S. as an example, virtually every successful program in the United States was set up with considerable funds, linked to a university and given a mandate to develop not only research but also services and to tie them together. In some states that mandate was actually legislated. The government had asked people many times to develop services but it never happened. Finally, a number of states, including Indiana, finally legislated saying that we must have services and you can no longer turn people away. Therefore, model programs were developed. A group of passionate and talented people, both researchers and clinicians, developed model programs for service that were then linked to research. In a number of states, those programs are linked to basic research as well as to more applied research. We could point you to several programs. As you can imagine, people wanted to replicate them. The services were good. They were based on evidence and on best practices. It was lovely. People from other parts of the state or other parts of the country would visit them and there were many replications.
We need to advance the research agenda. However, as much as the families of children with autism have been very good to us in terms of being participants, their goodwill is starting to wear a little thin because of their frustrations with service. That speaks to the importance of having parallel programs linking service to research.
I do not know if that is helpful for you. As a powerful example, in the research we are involved in with Dr. Zwaigenbaum on infants, we are now able to detect autism in a number of babies between 12 and 18 months of age. What an exciting opportunity to do earlier intervention to see if we can change things at a time when the brain is even more plastic.
We need to recognize the efforts of Autism Speaks. They have helped a number of us in Canada. They were previously known as the National Alliance for Autism Research. Autism Speaks and that alliance have partnered. You probably have heard both terms, so I wanted you to know. They have helped many of us in Canada and I want to acknowledge them. They are taking the lead on the idea of allocating funds for us to get in even earlier. I want it to be very clear: We all are so thankful for what they have done to help us move things forward in Canada.
However, in terms of our being able to compete for funds for very early intervention, our most pressing problem is a need for treatment infrastructures. We will be competing against people in the U.S. who have the treatment infrastructures to do the research. We are still trying to plan good studies, but there is this dilemma.
The model program idea could be part of the centres of excellence that we would move toward. We cannot lose the importance of setting up model programs for treatment and training. We do not want to lose that in the research agenda; the agenda must have the three arms.
We should spend some time talking about what options could be included. What are some priorities?
With all due respect to Dr. Edwards, I worry about having separate medical centres of excellence. I could not support that. It is better they are integrated.
Dr. Edwards: I did not mean separate.
Dr. Bryson: Perfect. I misinterpreted you; I am sorry. That makes more sense to me.
We want to spend some time outlining items that could be pursued within model programs or centres of excellence at the treatment and service end. Some of our colleagues will think they do not have a role, but as soon as we broaden the discussion to developing model treatment and training programs we would be including a larger number of people who would be very interested, including partners in education and partners in community service.
So far here we have not talked about provincial departments of community service, but I believe that every province has one. That is relevant because, in our province, as in others, a high percentage of the families in the highest crisis, where things are falling apart and they can no longer care for a youngster or adult, have autism. As was mentioned earlier, we need to forge links between the different departments. That could be done through these centres as well.
Dr. Fombonne: I want to return to the issue of psychopharmacology to clarify matters. In terms of the known chemistry in the autism brain, we do not know much. The only finding that has been robust over the last 30 years is that there is an abnormality of serotonin metabolism in about 30 per cent of subjects. That led to a number of studies looking at the efficacy of selective serotonin re-uptake inhibitors, SSRIs, to treat some of the autistic symptoms with mixed results.
We do not know who might have this abnormality. There are some interesting results in adults, but they have not always been replicated in young children; it is an ongoing question.
Other than that, there have been few hypothesis-driven studies in the psychopharmacological field. A number of studies have looked at the efficacy of drugs used for symptoms that are not the core deficits of autism but are associated with autism, like attentional deficits or over activity or irritability. Those are not core symptoms, but they are often co-occurring with autism. We have some studies showing efficacy of some compounds.
Everybody would agree that role of medication in practice seems to be high. Many, many patients are medicated, but it is probably in lieu of receiving appropriate behavioural interventions. There are concerns about excessive use of medication in the field. With no long-term safety studies, we do not know exactly what we are doing in using these medications with young children, so there are concerns about that.
We still have to look at psychopharmacological studies with a developmental perspective. For example, we must examine why young children do not respond to SSRIs, whereas adults do. We should pursue that in the future.
Another big area that could be developed and embedded into psychosocial intervention research is the combination: Does the combination of some medication with particular psychosocial techniques improve the outcome as opposed each single modality? That is probably the next generation of study to be developed.
I want to come back to the research. I agree with everyone that it is important to recognize that treatment studies are difficult to do. We have few randomized clinical trials in the field, psychopharmacology studies or psychosocial interventions. I do not think giving a chair to anyone would be sufficient. We need to do the studies; we need the combination of multiple expertise.
If we want to move forward, we need to bring in excellent bio-statisticians, epidemiologists, people who have expertise in designing randomized clinical trials. Typically that has not been the case so far in this field. We need to make that move. It means that in practice we need groups with critical masses of people who have different types of expertise in the treatment itself, in the design of randomized clinical trials, in the analysis. It has to be a centre. Moreover, what is happening in treatment and research elsewhere and in the United States in particular suggests that one centre cannot recruit within a reasonable amount of time the number of subjects necessary to have enough power. A network or a group of centres that can work together on specific treatment objectives is necessary. Our approach has to be multi-centric and each centre has to contain multiple expertise.
Senator Keon: Thank you very much, Dr. Fombonne, for what you said.
I want to bring you back to the research chair. I have been associated with the transition of the Medical Research Council into the Canadian Institutes of Health Research. I helped craft the bill for CIHR and I was involved in the creation of the Canada Foundation for Innovation and the creation of Genome Canada.
My feeling was, if we do not create Genome Canada, $100 million less will go into the research pot. It was a clever move to create CIHR. It is a great organization with a great philosophy. We also doubled the money that was going into research in Canada with that manoeuvre.
I would hate to see you throw the baby out here. One of the good established centres or good universities could accommodate a research chair probably associated with a knowledge exchange centre for autism, associated with a network. You could not get CIHR funding without it.
You people know more about it than I do. You could design this thing, and there is an opportunity to hold the government to what they have promised, blow it up into something good, and augment what you have. Otherwise, you can be whistling in the dark for a long time, trying to get adjustments to the CIHR budget. We have not even addressed what institute you would like to go to for an increase and so forth, whether neurosciences or another one.
I throw that out to get clarity as to where we are going.
Dr. Fombonne: I take your point. I do not have the historical background in Canada to comment further. I just know that over the last 10 years in the U.S., the treatment results that have been effective have been multi-centric, based in centres of excellence, working in networks.
In the field of child psychiatry and psychosocial interventions, the randomized clinical trials that we have in ABA have a total sample size of 40. We will never find subtle treatment effects if we do not go larger than that. To do that, you need collaborations across centres.
Senator Keon: Absolutely.
Dr. Fombonne: I am not rejecting the idea of establishing a research chair if there is the opportunity to do that.
Ms. Ivanco: In February 2005 I was part of a panel that CIHR had; it was chaired by part of Rémi Quirion's group. We discussed issues related to psychopharmacology. It was interesting that many of the people on that panel were interested in what happens to children's brains when they are given drugs, especially because we know that many kids who have developmental disorders are given a range of different drugs. That led to a funding program, but only four different grants were funded through the program.
The real issue is not a lack of interest in what is going on. Again, it comes down to funding. We are very much tied when we do not have the funding to do the research. Drugs are expensive; animals are expensive. It is difficult to do long-term studies on kids who have been given one or more drugs.
It comes down to an issue of where funding is going. That is important to remember.
The Chairman: In addition to specific comments about the announcement from Minister Clement, you have commented a lot about the chair and the symposium. In the broader picture of what you would recommend to us for a national autism strategy, if anything in particular needs to be emphasized, now is the time. We have another half hour, approximately.
Dr. Holden: I want to comment on cuts to funding. I hope I said effective cuts. Every time there are new grants for which people are applying, there is a shuffling of the amount of money that goes to any particular area. That has to happen, but in order even to maintain the level of funding that has been achieved over the last two years, you have to give more money. It does necessarily have to be targeted to autism. If we are to keep up the efforts of the researchers, we need to have more money.
CIHR is putting out several new requests for applications, RFAs. All those are wonderful programs. However, I fear the reality is that once you give two autism training programs funding for six years, somebody will say, ``We never got anything in our field.'' No matter what you do, this will mean reduced funding effectively to the autism training programs that people have been trying to set up. I did not mean that CIHR is not doing well, but I think we have to consider that.
Dr. Zwaigenbaum: My comments are in response to Senator Keon's question about the chair. I am encouraged that much of what I would hope would go into a national autism strategy has been articulated today. I feel it has been a successful and constructive day.
I hope there will be essential principles that would go into the strategy as well as the specifics. From the discussion around services and research, we need a dramatically new way of doing things.
The question about the chair is almost two different questions. Are there potentially positive outcomes of having the chair and are there merits to the approach? Absolutely. One does not want to look a gift horse in the mouth.
However, is that the solution? Is it the way forward? It is a small piece. As Canadians, we are all about compromise, but it is time for parents of children with autism to not have to compromise around service and accessing support for their children.
As a scientific community, it is time for us to not have to compromise around what is the best way forward. Effective funding programs that transform the direction of research, as Dr. Bryson, Dr. Fombonne and others have commented, is the way forward. Although it may seem like a distant goal, we have to keep in mind that this direction for research is happening in other places in the world, including to the south, where our new investigators will head if we do not start making real changes.
Ms. Ivanco: There is one more point for a national autism strategy. We have talked a lot about research funding and treatment options but, as well, families need services. That is an overarching element that could get lost in the focus on treatments and research. It is important to remember that the families need services. Respite for parents, for example, is important. One consequence of having children who require a lot of time is that other issues can develop and end up in the medical system, such as depression in families.
Funding for programs that deal with other family issues related to autism is important. There is the idea that many kids with autism are flight risks. Now there are dog services that could potentially provide another monitoring system for children to keep them healthy and ensure they have a long lifespan. Those are important things to add to a national strategy.
The Chairman: Thank you for mentioning that.
Dr. Bryson: To add to that point, it is my understanding from talking to social services and parents that the biggest problem in most places is that families have some respite but no one is trained to do it.
Ms. Ivanco: Exactly.
Dr. Bryson: Therefore, parents go to the store but either there is nothing on the shelves or what is there does not work because the person has no training whatsoever. That highlights the importance of training that goes beyond what we are doing in the two CIHR training programs, of which I am most supportive. I do not want to see them disappear. We need training of professionals as well. If that could be brought into our vision of centres of excellence and model programs, it would be extremely valuable.
Ms. Fleming: The committee has heard from many parents who have talked about the expenses incurred while they are on a waiting list or while they live in a province where there are no services. We have not so far today talked about support through the tax system. The government could move quickly on that element of our strategy. There are some deductions for families for their services but those deductions are not adequate. Families that spend $30,000 to $50,000 or more per year to provide the essential early intervention are not getting tax relief for those expenses. We heard from a parent who paid for services with her credit card.
This committee could recommend that the government take short-term steps through the tax system.
Senator Munson: Some witnesses have talked about opening up the Canada Health Act or offering amendments to the act. Dr. Keon has talked about the possibility of having autism listed as an essential service. I would like to hear some views on that from the witnesses because this could be an important part of our recommendations. Some people think that if you open up the Canada Health Act, multi-billions of dollars will be directed toward autism, and some believe that if it is listed as an essential service, the money will be directed toward that. I throw that open for discussion.
Dr. Lewis: I would like to get back to the issue of services and the need to train therapists. I would add one issue that has not been addressed in British Columbia or likely in the other provinces: how to implement quality control for the therapists that we train. Currently, there are no standards. We do not know how that outcome would translate for patients and families. That is very important as well and comes with establishing better treatment programs, which guidelines and credentialing of individuals will follow.
The provision of services across and within provinces also needs to be put on the table if we are to have a consensus on our approach to this. Provincial ministries interpret autism, autistic disorder and autism spectrum disorder in different ways. In British Columbia, the Ministry of Health is not involved. If autism is to become an essential service, then that is critical. Why, in our province and likely in other provinces, the ministries of health have not become involved is beyond me; I cannot explain it.
Dr. Joober: I would like to compare the kind of research that is done by pharmaceutical companies and by academia. We face a very complex disease. When we are looking for risk factors or for effective treatments, the effects of our treatments or our risk factors would be very small. In order to be successful to show anything, we need very, very large sample sizes. It is no wonder that when a company shows the efficacy of their treatment, the sample sizes they use are of 5,000 to 6,000 subjects. Research conducted in Canada is funded on the basis of 100 or 300 subjects at most. Then we are cut in the middle of the way. With this kind of research strategy, we will not go anywhere.
We will not show an effective relationship between risk factors or between treatment and outcome. In order to have an effective strategy, we have to put our efforts together and target large sample sizes. We have to homogenize our approaches and have a common strategy. Otherwise, everybody will have his 100 or 200 subjects and will discover and be published. However, I do not know what that will mean at the end of the day for people affected by the disease and for taxpayers.
Ms. Ouellette-Kuntz: Not only is it important to have large numbers of subjects in the groups in research and to homogenize our subject groups, but it is also important to standardize the approach to diagnosis. Currently, that is not the case in Canada. If we want to enhance clinical service interventions, we need to standardize how we identify these children. That will have significant implications for how we study the prevalence of these disorders and treatment effectiveness. If we include different people in different studies because we define or assess the inclusion criteria differently, we will not be able to show effective treatment.
Dr. Szatmari: I want to respond to Senator Munson's question, although my point might not answer completely because I do not understand the politics or how these things work. I feel very strongly that the services must be publicly funded. It is true that there is a two-tier healthcare system for people with autism.
That occurs in the social services arena, not in the health care arena under the ministries of health. We seem to tolerate it in social services without any difficulty whatsoever and yet we go ballistic when it happens in the area of medical services. I do not understand that hypocrisy. It needs to be publicly funded. If the ministries of health and social services and education got together and worked together and shared resources, they could accomplish this. However, the provincial ministries do not talk to one another. Maybe the federal government has a role in being able to coalesce resources from the various ministries.
If it were publicly funded, the threshold that it has to be evidence-based goes up. We cannot tolerate publicly funding services that are not evidence-based. That is a highly important part of determining what kinds of services ought to be publicly funded.
There has to be a spectrum of services over the age range. Services need to be for very young children, but not only for very young children. We have to have a spectrum of evidence-based, publicly-funded services. That ought to be a background principle of your report.
Mr. Yu: I do not want to hold out Manitoba as a model, but the ABA early intervention program for school-age children is indeed funded by the three departments that Dr. Szatmari mentioned — education, health and social services. They seem to have come together in Manitoba.
I also want to reinforce Dr. Lewis's point about standards and ensuring that quality of service is maintained. As other people here have mentioned, it is important that we look at the integrity of the treatment to maintain its effectiveness. It is very important not only to have qualified people but also to develop standards to help practitioners maintain the treatment integrity over time, especially a long period of time.
Dr. Edwards: You mention education in the centres of excellence that we will have. The Ontario government has put autism consultants in the school board. I have yet to meet any of them. None of the children in the schools are ever actually serviced by those people. They seem to have the biased viewpoint I spoke about, the stereotypical view of autism, that you do A, B, and C for the autistic child. If the consultant got to know the child and spoke to the mother and the teacher, it could easily be worked out, but that is not done. Rather, contact is a phone call with instructions to do holding therapy and restrain the child.
That is happening in my community. These people need to be on board and trained appropriately.
[Translation]
Mr. Giroux: I would like to add two suggestions to all of the issues that have been brought up and that autism research should look at. I would first of all like to see us contribute to some clarification of the diagnostic criteria of the various conditions that fit within the autism spectrum. We know that the autism spectrum is defined by DSM4 and that there do exist some ambiguities. One of these ambiguities is the lack of differential criteria between autism and Asperger's syndrome and non-specified pervasive disorders or atypical autism.
I do not know if we realize to what extent these ambiguities have repercussions at all levels, because we base our diagnostic decisions, our service decisions on the diagnosis and not on nosology or the classification of the disorder, despite its grave deficiencies. I would say that research should allow us to differentiate to such an extent that we should be able to obtain an algorithm of diagnoses separating the various conditions contained within the autism spectrum.
And now for my second suggestion. In Quebec, for a school age child, in other words aged four to 21 years, to be recognized as suffering from a pervasive disorder, he or she must have been given a diagnosis by a psychiatrist, a child psychiatrist or a neurologist. This is one of the causes of the backlog. The diagnosis depends upon the intervention of these specialists and, in my opinion, one of the solutions, one of the avenues to be explored in order to speed up wait times for diagnosis would be to authorize and to create an accreditation mechanism for other types of doctors or for psychologists who could then diagnose autism spectrum disorders. If that were done, a great many of the bottlenecks preventing the waiting lines from moving forward would be eliminated. That would not solve all of our problems, but it would nevertheless be a step in the right direction.
[English]
Dr. Joober: To improve the quality of research, it is extremely important to improve the quality of care. They must be very much intertwined to make advancements.
The Chairman: Present in the room are a number of people who have appeared before us previously, some of whom are parents who have considerable interest in this.
Do any of you have a burning question or a comment you would like to make to this panel? Please identify yourselves and, if you represent an organization, tell us that, and then proceed.
Barbara Beckett, as an individual: I am from the Institute of Neurosciences, Mental Health and Addiction at CIHR. I want to comment on the research chair. I understand that it stemmed from petitions from parents in British Columbia who were very interested in the training aspect we have been talking about. Part of the idea was that this would create an opportunity for training in the university environment. I think it was more of a training focus rather than a research focus.
The Chairman: Thank you.
Laurel Gibbons, as an individual: I am a parent of a nine-year-old child with autism. I appeared before the committee yesterday.
The Canada Health Act cannot be amended to include a treatment that does not exist within the health system, period. It is possible that a national strategy will delineate autism as a health issue and we can deal with that in the future. I believe the act could be amended and autism treatment added to the guidelines of treatment. However, in the short term we need to take action now to be effective in an immediate time frame. Developing a national strategy that recognizes autism as a health issue first and foremost, working synergistically with education, social, justice and so on, would best serve Canadians and researchers in the short term.
I heard here about the diagnostic criteria that need to be put in place. My son was five and a half when he was finally diagnosed, even though between the ages of 12 months and 18 months the signs were all there. They were dismissed by the pediatricians.
When he was diagnosed, we were told not to bother with any waiting list for intervention by the preschool autism program, but rather given the name of two books and a prescription for Respridone.
Robbie is nine and a half now and is still physically restrained in the school system. He earned five A's on his report card in grade 4, at grade level. We deal with a tremendous number of issues on a day-to-day basis. It is a battle on the home front.
Robbie is now taking three prescriptions, and I wonder every day what that does to his little body. I am so glad that Senator Keon brought that up today, because I believe that is a critical area that needs to be investigated. We do not have available the long-term studies that look at the impact these powerful and sometimes potent drugs could have on his liver, for example. Will I be looking at a liver transplant in 10 years' time?
I am glad to see there are so many wonderful professionals who have come together, and I thank the Senate for inviting you here today.
The Chairman: Thank you very much. We have come to the end of our program today. It has been terrific having you all here. You have given us a wealth of information to digest, as well as some written materials we can review. If you have anything you wish to send us in writing, feel free to do so.
I thank you again for attending. I wish you well for the weekend. All the best for the holiday season and in the new year. You will probably hear from us again.
The committee adjourned.