Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue 11 - Evidence - November 23 meeting
OTTAWA, Thursday, November 23, 2006
The Standing Senate Committee on Social Affairs, Science and Technology met this day at 11:00 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: Honourable senators, we have two panels of witnesses this morning. On our first panel we have two individuals. We have Jo-Lynn Fenton, who is President, Autism Society of Canada. The society is a national non-profit organization founded in 1976 by a group of parents committed to advocacy, public education, information and referral in support for its regional societies.
We also have Suzanne Lanthier, who represents Autism Speaks Canada. Ms. Lanthier has worked in the not-for-profit sector for close to 20 years. Currently, she is the Greater Toronto Regional Director for Autism Speaks Canada, an organization dedicated to raising funds to support research and raise awareness of autism spectrum disorders. While relatively new to Canada, Autism Speaks has gathered significant positive exposure in the United States.
Ms. Lanthier is also the proud mother of a seven-year old son named Scotty who was diagnosed on the autism spectrum disorder five years ago.
Welcome to you both.
Jo-Lynn Fenton, President, Autism Society Canada: Autism Society Canada is pleased to be invited to the Standing Senate Committee on Social Affairs, Science and Technology to contribute to its deliberations on the treatment for autism spectrum disorders, ASDs, in Canada.
As a parent of two children with autism spectrum disorders, I have listened with interest to the testimony of the many witnesses you have called. Today, I appear before you in my role as President of Autism Society Canada but, as with some of the previous witnesses, the needs of my children inform my perspective, and they are the reason I and many other parents, grandparents, aunts, uncles and other family members volunteer in autism organization support groups and charitable organizations.
I want to begin by telling you about the mandate of our organization and the work we have undertaken over the last several years on behalf of our community.
ASC is a national autism organization with member societies in the 10 provinces and two territories. As a national autism charity, we are committed to raising awareness and understanding about ASDs for the general public, policy-makers, MPs, senators, service providers, educators and the thousands of Canadians who visit our website each month.
The autism community is diverse and composed of many stakeholders, including children, youth and adults with ASDs, parents and other family members, health care professionals, educators, researchers and policy-makers.
Like many diverse communities addressing pressing and complex issues, we do not have all the answers, nor do we always agree on every issue. However, we all acknowledge that autism has not yet found its rightful place in the health, education and social services systems of our government.
We strongly believe that the way to meet the multi-faceted needs of our community across the lifespan is through a national autism strategy. We welcomed the announcement by the Minister of Health earlier this week that Health Canada will hold a symposium on ASDs with stakeholders from across Canada. We see this symposium as an important opportunity to develop a comprehensive national autism strategy with all stakeholders, including the provinces and territories at the table.
Some of you may have had the opportunity to attend the presentation ASC made to senators and MPs two years ago in which we began our call for a national strategy. Here is what we asked for then and what we continue to ask for now: Make autism a national priority. Health Canada must work with researchers to undertake surveillance and reporting through its Public Health Agency of Canada. It is essential that national guidelines for treatment and service delivery are established so that it does not matter where a person with autism lives, and that appropriate services are available regardless of age.
The Government of Canada must work with the provinces and territories to put these guidelines in place so we can be sure that appropriate treatment is provided.
With regard to improving screening and diagnosis, universal autism screening should be available in Canada. Accurate, timely diagnosis and comprehensive assessment of all aspects of ASD are essential. These services must be provided by professionals with specialized ASD diagnostic training for both children and adults. Depending upon where you live in Canada, an accurate diagnosis take several years. At ASC, we regularly hear from parents about the misdiagnosis of their children, and from adults who have been diagnosed after years of seeking professional help. Given the success of various early intervention treatments to improve the outcomes for people with ASDs, the government must do better in this area. Appropriate screening and diagnosis are key.
With regard to improving access to treatment, universally accessible, evidence-based treatment is essential, regardless of age or ability to pay. The federal government must work with its provincial and territorial counterparts and increase funding to provide critical, no-cost, effective and evidence-based treatment for all as long as deemed necessary by the individual's multidisciplinary team.
Treatment to address educational and learning needs, behaviour issues, communication problems and motor and physical disabilities is also vital. These treatments may include behavioural intervention, social and self-help skills, speech and language therapy, physical or occupational therapy, specialized medical services and pharmacological assistance.
Recent research has shown that a variety of medical problems are experienced by individuals with autism that are overlooked or attributed to their autism. Like you and me, people with autism have hearing and vision impairments, infections and ailments. These ailments are often misdiagnosed or underdiagnosed because they are expressed in different ways with persons with autism. More research is needed to understand how these medical issues are manifested in persons with autism and what treatment may work best. Many people with ASD are sensitive or resistant to conventional or standard doses of medication.
To improve services and supports, targeted educational services, professional training and social and health supports are needed for Canadians with ASD across the lifespan. These services include supports to facilitate community inclusion and quality of life, such as teachers and aides with specialized autism education training; targeted life-skills programs; mental health services provided by professionals trained in issues related to ASDs; career and vocational training; and assisted living support.
Supports for care givers, including respite, family training and assistance, sibling supports, social services and long-term planning assistance are also needed. As well, improved financial and vocational supports to individuals with disabilities and their families through the federal tax and labour systems are needed.
To foster research, significant funding must be targeted for ASD research to Canadian funding organizations such as the Canadian Institutes of Health Research, CIHR. Research that provides individuals with ASD and their families with the practical support they need is key.
We need more research into the etiology, epidemiology, variability, treatment effects and medical issues surrounding ASDs. We need effective means for translating research findings into lay language so that everyone can benefit from the results. We need to build bridges between families, service providers and government to ensure full citizenship to all individuals on the spectrum and their family members.
At ASC, we believe that a national autism strategy must encompass more than treatment, and must address the needs of our community across the lifespan. On behalf of the francophone members of our community who live outside Quebec, we must tell you that there is a noticeable shortage of services in French. We need to include French language services as part of our national autism strategy. Our board had the pleasure to meet with these committee members for the first time in September. This was the first time a group of Canadian adults with ASD had the opportunity to consult together and to provide advice to a national autism organization. They have worked hard to guide us on the issues of importance to adults with ASD. Here is some of the advice we received for our advisory committee.
As adults diagnosed with autism spectrum disorders from across Canada, they are concerned about the lack of service for adults who have been diagnosed with an ASD and for those who require an ASD diagnosis. In their experience, there needs to be a greater recognition of the needs of adults with ASD through the provision of a wider range of specialized services across the lifespan.
The needs for services and supports for individuals with ASD do not end in childhood. These needs continue into young adulthood, mid-life and through the senior years. Specifically, adult Canadians with ASD must have greater access to psychological services. These services may include diagnosis; assessment; individual, couple and family counselling; medication and mental health advocacy; educational supports, which include post-secondary education supports and accommodations, educational groups and workshops; life-skill training in areas such as budgeting, organizational skills, work skills and social skills; appropriate and safe housing opportunities, including group homes and assisted independent living arrangements; social and recreational opportunities; employment opportunities that provide skill assessment and training; and legal aid and other legal resources for those who need them.
Adults with ASD who are themselves parents require financial support; education about child development and non-verbal communication; individualized and specialized assessment of their parenting capacity; genetic counselling and parenting skills counselling; and respite.
We welcome the advice of our advisory committee and we are pleased to share this advice with the committee today.
ASC promotes the current understanding of ASDs and respect for difference. We know that stigma is a great concern in our community, as it is with the many communities of our colleagues from the Canadian Alliance of Mental Illness and Mental Health, CAMIMH. ASC has been a member of CAMIMH since 2002.
The full report on mental health issues released this past May from this committee, Out of the Shadows at Last, included many areas that are important to people with ASDs, and their families, caregivers and communities.
ASC supports the establishment of a mental health commission and the creation of a mental health transition fund. We stated so in our June 2006 open letter, a copy of which is in your information package. You have heard testimony from many of our partners, researchers, service providers, professional organizations, health professionals, senior government officials and policy-makers. You will also hear more testimony from individuals from our community and more researchers. The perspectives of individuals with ASD are important. At ASC we are doing our best to listen to all members of our community.
You have heard much information about autism spectrum disorders and the treatment and services that are needed and often lacking. ASDs are complex conditions that are being studied by many scientists and researchers who are pursuing many leads on their causes and best practice for treatment. Researchers have not yet figured out what causes autism spectrum disorder, but it is clear from the work undertaken thus far that these brain-based conditions are extremely complex. Treatment, supports and accommodations must be tailored to the unique needs of the individuals across their lifespan. Because of the spectrum nature of ASD, a cookie-cutter approach will not meet the needs of our diverse community.
Suzanne Lanthier, Greater Toronto Regional Director, Autism Speaks Canada: Honourable senators, it is my pleasure to appear before you today as a representative of Autism Speaks Canada. As the chair said, I am the proud mother of a seven-year-old boy named Scotty who is on the autism spectrum. He currently attends New Haven Learning Centre in Toronto, a private, not-for-profit school for children with autism that uses ABA-based methods of teaching. I credit his strength and determination as the reason I am able to present before you today. Like Ms. Fenton, I bring both a personal and professional perspective to my presentation.
I will also say — but will not apologize — that my message will be similar to a number of the presentations you have already heard. Many of the esteemed scientists from whom you have heard over the course of these hearings are researchers that Autism Speaks Canada works with closely, and provides funding and support for their important work. To be able to present a consistent message is, I believe, positive and progressive.
Autism Speaks has been referred to by a number of presenters to date from both a research perspective and an awareness perspective. Many of you may have seen the video Autism Every Day, which profiles the heart-wrenching but real-life stories of mothers who have a child or children on the autism spectrum.
Margaret Wente's column in The Globe and Mail from this past Tuesday directly quoted some of the mothers who appeared in that documentary. The families that appear in that video are from the U.S., but their plight is universal. It spoke to me and to many families and confirmed the fears, frustrations and exhaustion, as well as the frequent — but not frequent enough for many families — times of triumph and joy that having a child on the autism spectrum brings.
The mission of Autism Speaks is as follows: Our goal is to change the future for all who struggle with autism spectrum disorders. We are dedicated to funding global biomedical research into the causes, prevention, treatment and cure for autism; to raise public awareness about autism and its effects on individuals, families and society; and to bring hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.
Autism Speaks is relatively new to the Canadian autism community, but we have been embraced wholeheartedly by families, service providers, the science community and concerned citizens because of our mission and goals. Families are passionate about research. Families impacted by autism are sponges, willing to soak up any and all information on research projects and findings in Canada and across the world.
Dr. Peter Szatmari spoke yesterday about the vital role of knowledge transfer and communication of current research findings to the autism community. We reiterate his passion to disseminate timely and accurate information on evidence-based treatments and interventions to families so that they have all the information from a reliable and credible source.
Autism Speaks came to Canada as the National Alliance for Autism Research, NAAR. NAAR and Autism Speaks merged in February of this year, and I will talk more about that later. As NAAR, we, along with CIHR, were one of the chief funders of the Canadian Autism Research Workshop hosted by the Autism SocietyCanada in 2002. The workshop led to the development of a white paper published in 2004, the objectives of which were to outline a plan for a national autism strategy and guide the implementation of the Canadian autism research agenda.
Five years following the workshop and the release of the white paper, here we sit. To look at the situation positively, we are at least still talking about the issues. The number of Canadian researchers and quality of research has grown in this country, coast to coast. Canadian researchers are highly regarded for the work they do and for their leadership in collaborative studies around the world. Also from a positive perspective, Autism Speaks now has a solid presence in Canada and a role to play to move the agenda forward. The recommendations contained within the white paper were strong. They were based on fact, current experience and science at that time and came out of intensive study and collaboration with major stakeholders across the country. As a group, we knew what we wanted to do and articulated that goal well, but the report did not contain specifics on how to do it, who would do it, who would pay for it, how much it would cost, and how we would monitor and evaluate our progress. We need to move to that level of implementation, and Autism Speaks wants to be a part of moving to that level. The autism community will accept nothing less.
In her presentation to you, Wendy Roberts spoke to the need to break down the silos and have ministries of health, education, and children and youth services from across provinces join with the researchers, parents and service providers to share information and ideas. This sharing is critical.
On or around the time of the white paper publication, Canadian researchers approached NAAR to form a Canadian entity. Back then, and even today as Autism Speaks, a large proportion of the funds raised were garnered through grassroots walks for autism research held in many cities and towns across the U.S. Canadian researchers recognized the passion of the families here in Canada to push the research forward. To date, NAAR and Autism Speaks have held two successful walks in Toronto. We have established a board of directors whose vision is to expand the walk program within Ontario and across the country. The board is committed to generating revenue to support the mission of Autism Speaks Canada through other initiatives and events, and to taking a leadership role in providing access to information and support for families, service providers and other key stakeholders.
The announcement yesterday from the Minister of Health is a good start and we are committed to assisting in any way, using our expertise, contacts and resources both inside and outside Canada to achieve these and other goals.
There is often opposition to looking at how things are done in the U.S., and a belief that what they are doing south of the border will not work in Canada. In some cases, this belief is true. As much as there are successful initiatives, structures and programs in place in Canada, we also stand to learn from successes within the U.S. and other countries. We need to look beyond our own borders when necessary to say truly that we have built a Canadian autism strategy based on best practices.
We simply need to look at the success of the Human Genome Project model, a collaboration of 170 genetic researchers from over 50 institutions around the world, as an example.
Autism Speaks was founded in 2005 by Bob and Suzanne Wright whose grandson was diagnosed in 2004. In what I describe as one of the most progressive and selfless initiatives I have seen working in the non-profit sector for close to 20 years, Autism Speaks merged with the NAAR in February of this year. NAAR had been in the business of raising money to support autism research for close to 10 years; Autism Speaks for just over a year.
The leadership of both organizations knew that their impact on the global autism community would be far greater and much quicker by working together than apart and, in a short period of time, Autism Speaks has lived up to that vision.
Autism Speaks is the largest non-governmental, not-for-profit funder of autism research in the world and, to date, has committed over $43 million in pilot studies, mentor-based fellowships and research partnerships, such as the Human Genome Project. Since 1998, the Canadian research community has received from NAAR, and now Autism Speaks, over $3.4 million in various grants and projects. The details of these grants are provided to you separately as a handout, for your information.
This past year, Autism Speaks proudly announced a new funding opportunity for researchers studying early intervention strategies for children at risk for developing autism. This new funding initiative reflects the mission of Autism Speaks to fund scientific research also into the treatments of autism spectrum disorder.
The impact on awareness of Autism Speaks in the U.S. is another best practices model. A creative and impactful campaign sponsored by the Ad Council called "The Odds," which gave the message about the one-in-166 odds of a child being diagnosed with autism, drew hundreds of thousands of people to the Autism Speaks website. They came to learn more about the early warning signs, what to do if they suspect their child is at risk, and to read information on the latest in research, linking families to local resources and support.
Advocacy efforts and the partnership of Autism Speaks with other autism organizations in the U.S. led to the development of The Combating Autism Act, which contains many elements of what we are talking about in terms of a national autism strategy.
Do we need a national autism strategy in Canada? Absolutely. For me to say what the strategy should contain would be premature. Again, I think it is critical to reassemble the key stakeholders across the country to include families to develop the framework formally for a strategy. However, I do have a few general ideas for what might be some of the key and necessary elements of a strategy.
I think the best way to approach a strategy like this is to start from the beginning of a family's journey, and not end at the point that a child reaches kindergarten, age 10, out of high school or moves into adulthood. A truly effective national strategy needs to address issues across the lifespan of an individual.
A national strategy needs to be based in research and best practice models and have adequate funding to support ongoing evaluation of both the processes and systems that have been put in place, as well as the quality and effectiveness of treatment delivery. Again, these recommendations are not new to you. Families and those who see young children regularly need to be aware of the early warning signs. Awareness campaigns had been run in some areas of the country, but inconsistently and with little coordination.
Once families suspect their child is at risk, they need to have access to an assessment to determine if their suspicions are correct. These assessments need to be provided as locally as possible and as quickly as possible, using the best-practice methods based in research. Constant evaluation into current assessment tools and continued research into new tools and strategies needs to continue in this area. Dr. Lonnie Zwaigenbaum and his colleagues have shown tremendous leadership in this area of developing screening tools for young children. To continue to inform policy and funding decisions, we need to be sure that assessments are done with the highest level of quality and consistency and that we are recording information using standardized methods at a national level.
Once families are told their child has autism they need access to information that is correct, helpful and supported in terms of what are their next steps. Where do they go? Who do they talk to? What should they do? A diagnosis at any age, whether a child is six or 16, is devastating. When families are not given information on what to do next, or, in some cases, too much information, too many places to go, too many websites to look at, we only add to their confusion and devastation. We need to help them navigate what has become an incredible maze in this country.
It is all well and good to identify children as early as possible but if a family then has to wait for sometimes up to two years or more for access to any kind of intervention, we will be doing our families a huge disservice. In fact, we are doing that disservice today.
Imagine the mental anguish that families endure once they realize that their child has autism. They know that help is out there that can make a significant difference in their lives, but they have to wait years to access it. In some cases, they receive the help, see the results and then have it taken away only to watch their child slip back. In too many cases, they do not receive help at all.
You heard yesterday from Dr. Szatmari and other presentations that we cannot fit one treatment or an intensity of one treatment to the needs of all children. We must be flexible, gain an understanding of a child's individual needs, constantly monitor their progress and augment the treatment approach.
Many children respond well to ABA therapy, and my child is one of those. However, some do not respond as well and some not at all. Why is that? We need to find out. It is critical that we continue to study, through research, ABA therapy as well as other interventions. We also need to use what we know now more effectively. We cannot wait until we find all the answers. We have found some that work and work well with some children.
The research, with respect to treatment and interventions, needs to look at the needs of older children, young adults and adults. Adequate funding needs to be attached for evaluation. We will be no further ahead five years from now if we ignore the need for evaluation.
We need to ensure that standards are in place for the delivery of these interventions. We need to do more to attract people to the field, both in terms of research and in terms of service delivery. The mentor-based fellowship funding stream of Autism Speaks does this through its granting program, but we have a responsibility in Canada to do much more.
Almost 10 years ago, when the first proposal for research funding went to the scientific advisory council of then NAAR, I am told that the first line of that proposal read that all Canadian autism researchers could fit into a small minivan. Today we would need a bus or two, which is good.
Right now, the leadership in the Canadian autism research community is extraordinary and you have heard many presenters before you. We need to have young scientists teamed up with, and inspired by, these dedicated individuals. You heard from Tracie Lindblad of the difficulty in attracting speech and language pathologists to the field. There is a shortage of child psychologists across Canada. These real issues need to be addressed as these professionals, along with others, are some of the key components of assessment, treatment and intervention processes in this country.
I will end my remarks with one last thought. For families already under severe stress, with the knowledge that their child will be challenged in some way for the rest of their lives, it is completely unfair that they spend their precious resources and what little time they have wondering what to do, where to go for help, what help to get, who to trust and who to believe. Families should not spend their time wondering if they should move to another province because they have heard that things are better. If something works well in one province or one area of one province, it is up to all of us to see that research, that program and that structure replicated across Canada so that every child can benefit. No matter where parents live, they need to have access to the best information, the best research-based treatment, the best support services, and the most qualified professional staff. They also need to feel confident that their government is working with them, not against them, to maximize their child's well-being.
Access to treatment, interventions and support should not be based on age, where you live, an arbitrary cut-off of level of functioning or systems that are too rigid to even attempt change.
The Chairman: Thank you for two thorough presentations. Let me ask you about the differences between your organizations. There are your two organizations — Autism Society Canada and Autism Speaks Canada — and then there are three more coming later. We call them advocacy groups. Is there overlap or coordination? Are you both saying the same thing?
Ms. Fenton: Our community, as you have obviously brought out, is diverse. Meeting the needs of our community is complex.
Autism Society Canada is a charity. The advocacy that we do is based on the Canada Revenue Agency rules for charities, which leaves us focussed mostly on awareness, public understanding of autism, and making presentations similar to this. Other groups are strictly advocacy groups. They are not regulated as charities and by the CRA rules.
In the past, we have been able to partner nicely with Autism Speaks when they were NAAR. When available, we work on things together. I think you can see that from the Canadian research report we did. We look forward to partnering with as many people as we can. That is the nature of what we hope to accomplish.
Ms. Lanthier: Clearly, many organizations call themselves advocacy groups and information and support groups. Some have a different focus than ours. Autism Society Canada and Autism Speaks have worked jointly.
We have an increased focus on biomedical research and raising funds to support that research. That sets us apart from some of the other organizations. For instance, other organizations also have mandates that deal specifically with treatment, or advocacy for a certain kind of treatment.
While there are differences, as you can see from Ms. Fenton's presentation and mine, our messages are pretty much the same. What needs to happen is, similar to the merger between Autism Speaks and NAAR, we can do more together than apart. Certainly, our two organizations recognize that and are willing to do that.
Senator Munson: We have heard so many heartbreaking stories. We have heard terms like epidemic and crisis with autism. They are touching and important stories.
At the end of the day, though, is a thing called money. We need to make recommendations in our report. Do you feel we should recommend that the Canada Health Act be opened up or amended within these national guidelines you talk about, and that there be specific money set aside across the country on a level playing field to treat autism from zero all the way through a person's lifespan?
Ms. Lanthier: Your question is a two-part question with, from what I can tell, two distinct answers.
Does money need to be set aside to deal with autism across the lifespan of an individual? Absolutely, without question: Both of us in our organizations hear stories on a daily basis about the struggles families face. That money is a priority.
In terms of the Canada Health Act, my only concern about opening up the act and trying to change it is when we talk about autism in terms of epidemic proportions and the crisis that is happening, my fear is we will be bogged down in that process and that process will take too long. By that time, we are talking about another period of time when families will not have been served.
It is important to look at opening up the act as an option, but it does not need to be one or the other. We need to move ahead regardless of whether we want to open up the Canada Health Act again.
Ms. Fenton: As we know, the Canada Health Act is not disease-specific. As I pointed out, we have not yet found our rightful place in medical, educational and social services systems of our government. It would be a narrow view to say the health act will cover all the aspects.
These individuals need treatment, supports and accommodations across their lifespan. Will the health act cover all of those? We should be careful how we approach a national strategy.
Senator Munson: In the meantime, are waiting lists becoming longer?
Ms. Fenton: Yes.
Ms. Lanthier: Yes, the waiting lists are longer both in terms of assessments and treatment. When we talk about the shortage of child psychologists and trained individuals to conduct the assessments, even if a parent suspects their child may have autism, there are some places in Canada — certainly in Ontario, an area I am more familiar with — where families wait up to a year to be assessed. It takes that much time for the stamp to be put on the piece of paper, saying yes, the child has autism.
Senator Munson: Once a child is assessed and reaches that age of 6 or 7, and four vital years have gone by.
Ms. Lanthier: Yes, hopefully, with more education as to what the early warning signs are, assessments will come at an earlier stage.
Years ago, a formal diagnosis of autism was not made until a child was at least 2 years old. In most cases, it was not until the child hit school or preschool age that teachers saw what was going on.
Presently, diagnoses are made earlier. Dr. Zwaigenbaum, who I mentioned in my report, has been a critical piece of this pie in that he and his team have developed early screening markers.
From my personal perspective, knowing what I know now, I could have guessed at the time my child was 8 months old that he was at risk for developing autism. I did not know then what I know now. With increased education, families need to know what those early warning signs are.
Parents wait for upwards of a year for assessment. Then they receive an assessment that yes, their child has autism. In my case, I was given a phone number to put our names on a waiting list for one kind of treatment that may not be effective. Then we sit back and wait and watch our child slip away.
Senator Munson: This may be personal. You do not have to answer it, but I think there should be a human face put to this issue every time we talk about autism.
Your son's name is Scotty; he is 7 years old and he is in a private school for autism. It must cost you a lot of money.
Ms. Lanthier: It does. I am one of the lucky families in Ontario who receives partial subsidy for that. The subsidy covers about one-third of the cost of the school. There are additional costs on top of that in terms of speech language pathology and special service providers. Parents cannot have a typical 16-year-old pick up the child from school and drive him home. Parents need to pay professionals who know what they are doing.
The costs are astronomical and it is a huge stress. It causes family breakdown, as we know.
Ms. Fenton: Before we move on, we should address the issue of capacity. Even if we opened up our purse really wide and said here is all the money you need, there are not enough trained individuals to provide these children with the supports and accommodations they require. A simple task such as picking them up from school can be challenging if the person does not understand this disorder and how to work with that.
We need to look at our system and our strategy carefully. Right now, a lot of people are out there purporting to provide intervention therapies, which they are not qualified to provide. Bad therapy is terrible.
The Chairman: The list has expanded and the time has diminished. We must go to the next panel at noon so we have to keep these questions short.
Senator Callbeck: I want to continue on with the topic of waiting lists. Ms. Fenton, I believe you said sometimes it can take two years for the proper assessment and diagnosis. Obviously, we have a shortage of professionals in the diagnostics area. As well, you mentioned child psychiatrists once or twice. Is there a role for the federal government to identify these shortages, and to help people enter into these programs, train them and retain them?
Ms. Fenton: The government can play a role in having universities foster and nurture people interested in working in this field. Child psychiatrists are needed and psychologists trained in the necessary diagnostic tools to assess these individuals. We can do a great deal to foster capacity, and research would be one key area.
Senator Callbeck: Is that role the federal government's or provincial government's?
Ms. Fenton: I think it is the role of both. Some funds come to dedicated educational institutions from the federal government to enhance the medical communities and other disciplines. That is why a symposium is paramount bringing together all stakeholders and the provincial and federal governments.
Ms. Lanthier: It is not enough to say that we will do this and we will do it in all of these provinces. Rather, we need to coordinate what is happening. I was at a conference this past Saturday and heard an interesting presentation from representatives from British Columbia who have set up an interesting and effective assessment structure within their province to address these issues. They have set benchmarks for when children are to be seen, from first phone call to diagnosis. They are working hard to achieve those benchmarks.
In respect of assessments and other activities for later in life, it is important at this level to get the message out on issues of standardizations and evaluations. In that way, the provinces do not go their separate ways in this area. We need to measure ASD across the country.
Senator Cordy: You have helped us in our deliberations on an extremely important issue. I was an elementary school teacher so I understand many of the things you are saying.
I am interested in the knowledge exchange you talked about. Ms. Lanthier, you spoke about parents being overwhelmed. I have seen parents of children who were diagnosed and wondering what to do. Much material they see is in non-layperson's language. As a committee, we recommended in our study on mental health and mental illness that we would have a mental health commission. Part of the role of that commission would be knowledge exchange: not just sending information out but a centre where people can phone, email or write in and receive responses. Can you see autism fitting in with that commission if it were set up?
Ms. Lanthier: I will be cautious in my answer. I can see autism fitting in but I am aware of the differences in the autism community. I am concerned about being lost under the larger umbrella, to be honest. Prior to working with Autism Speaks Canada, I came from the children's mental health world, where I know the pressures of mental health are huge.
To be honest, I have a fear that, in layman's terms, we will be lost in the process. As Ms. Fenton said, we are still not clear about whether we are talking about a mental health issue. Diagnoses are made by developmental paediatricians and psychologists. If that structure needs to be in place for this issue to move forward, how could we say no? Certainly, there is value in being clear about separating the two areas.
Senator Cochrane: Ms. Lanthier, you spoke about the white paper that was produced and that stakeholders were consulted. Who were the stakeholders?
Ms. Lanthier: They were researchers from across the country, representatives from some of the larger organizations, executives and government representatives. I have a copy of the white paper with me so I can provide you the official list of who attended.
Some people there have presented before this committee, such as Wendy Roberts, Peter Szatmari and Susan Bryson. The workshops were set up to talk about the areas of research in Canada and globally.
The director of research for NAAR in the U.S. also attended, and the executive director of NAAR formed part of the planning committee. There was a clear vision to look at research globally, and in Canada to set the tone for the Canadian research agenda.
Senator Cochrane: From what you say, then, it is my understanding that no individuals with autism were in attendance.
Ms. Lanthier: I do not believe there were but I would need to check the list. Again, the conference focused on the research element of autism. The kind of symposium that the Minister of Health is talking about as well is a huge undertaking. That does not mean the symposium cannot or should not be undertaken. We need to expand the list of people that attend. I am trying to recall how many people attended but I believe there were about 20 or 30 people.
Ms. Fenton: It was closer to 150 people. The conference was huge conference but it had a specific direction. Researchers and government officials from all departments of health, the provinces and territories were invited. The nature of the conference was to learn what was currently happening in research to determine the direction for research in Canada.
Certainly, Autism Society Canada now has set up an advisory committee of individuals on the spectrum to receive advice from them. That was the beginning stage so, at that conference, no one on the spectrum was invited. The conference was clearly set up to discuss research.
Senator Cochrane: Is there a move afoot among your organizations for autistic people to present their views? We heard from Michelle Dawson yesterday, who was brilliant in her testimony. I am sure there are more people with ASD like Ms. Dawson if we could hear from them. I do not know why we do not hear from them. Your organization would be the one to encourage that participation.
Ms. Fenton: An individual with ASD is on our board who represents the province of Manitoba. His name is Kristian Hooker and he will appear before your committee in early December.
Senator Cochrane: Was he part of this white paper?
Ms. Fenton: He was not on our board at that time, which was almost five years ago. We have moved a long away since then. When you talk about stigma and other such issues, we have taken baby steps.
Senator Cochrane: Your move is to have some people with ASD participate.
Ms. Fenton: Yes, we have an advisory committee comprised of individuals on the spectrum and we have individuals on our board.
Senator Cochrane: What about decision-making?
Ms. Fenton: They are involved in the decision-making process.
Senator Fairbairn: When I listen to you, I realize what a learning experience this is for me and probably for others on this committee. My question is simple: I cannot understand why in a prosperous and caring country like Canada, with all our academic institutions and a country with, we are told, some of the best scientists in the world, a centre has not been developed within our educational community to make this issue a primary consideration. I think of my own province of Alberta and the University of Alberta, which is loaded with good medical science.
Senator Munson: And money.
Senator Fairbairn: Yes.
Ms. Fenton: Autism is a relatively young disorder. It was recognized as a disorder in the early 1940s. Individuals with Asperger's syndrome were not added to the Diagnostic and Statistical Manual of Mental Disorders, DSM, until 1994. The research over the course of the past 50 years has changed from ASD being due to bad parenting to moving along. Researchers are learning so much about this disorder each day that now people are starting to realize the importance of setting up centres of excellence.
Dr. Susan Bryson is the research chair at Dalhousie University in Halifax. ASDs are starting to be recognized. Sometimes when people look at systems, they expect systems will immediately take a right turn. Systems change slowly. Moving along, each day we learn a new thing. I would love a centre of excellence to be set up tomorrow saying, here are the best treatments and here are the people to provide those interventions. However, that is not how we work. Movement is slow, unfortunately.
Ms. Lanthier: Incidence rates have risen so dramatically, even in the past few years, that we were almost in a position of being only reactive, and not having the ability or money to be proactive. If you talk about a limited amount of resources, where will they go? They must go into trying to help these children.
Parents were almost frantic. They were looking and searching for anything they could find. This is what is wonderful about this opportunity. The franticness is still there, but parents have realized that unless we take a step back, take a breath and look at what we need to do, we will never move beyond the franticness to a point where we can be proactive rather than reactive.
The incidence rates will not go down. In fact, they seem to be going up. The franticness will remain. Parents say, "I know research is taking place now, and the money I raise for research may not have an impact on my child, but I want to ensure I do something for future generations." That is astounding for parents who have two four-year-old twins on the autism spectrum who are out of control.
Ms. Fenton: Asperger's syndrome was added to the DSM in 1994. My eldest son, who has Asperger's, was born in 1993. When I went to the psychologist when my son was three and said, "I think something is going on here," the psychologist told me, "His behaviour is extreme but not abnormal. Go home and be a better parent." That information was provided because the individual did not know much about this disorder. He was two years late in understanding the research. We need to play catch-up. We need to be pro-active and not turn people away. That means we need to take the time to learn how to recognize the warning signs and do appropriate screening and diagnosis.
Senator Nancy Ruth: I am curious about how much the school fees are, and how subsidies are structured for children.
The thing that impressed me most about the presentation yesterday by the autistic woman was what I heard almost as a plea: "Do not use all research and resources to make us like you, to make us function as whatever a normal Canadian is." One hears this plea from many groups in Canadian society. My second question is, what response do you have to that?
Ms. Lanthier: New Haven's tuition fees run around $55,000 a year. They have an active fund-raising board as well, and their mission is not to turn away any child that needs help, but they do have to turn them away. The Ontario government, through its preschool autism service, funds about a third of that for me. The rest is covered by salary support from the rest of my family and whatnot.
With respect to Michelle Dawson and her plea, it is interesting. We hear that regularly, and they hear it in the U.S. regularly as well. It is difficult because we receive different opinions depending on who we talk to. Oftentimes, adults on the spectrum are not verbal and do not have the capacity to say the words. They use other means of communication to get the message out. I think it is important that these people sit at the table.
At this point, speaking personally, I want my child to have the fewest challenges in life as possible. Every parent wants that. Elements of his autism are extraordinary and bring us great humour and joy. Elements of his autism are not joyous. I am sorry that they are not joyous. I worry everyday. I wake up every single day worrying about what will happen to him when I am no longer here. What will happen to him if my plane on the way back to Toronto crashes and I die? He is seven. I worry about that every single day.
Will I do everything in my power to ensure that he is, not necessarily like me, because I do not think he would want to be completely like me, but will I do everything in my power to ensure he has the supports necessary to function in the life he wants to function in? Yes: Until he can tell me what that life is, I need to, as his parent, advocate for what I believe is best for my child. That is what parents typically do.
No organization means to say that someone with ASD should be like him or her or like us. We want to do what is best for every child, from our perspective.
Ms. Fenton: I agree. The reality is that everybody wants our children to reach their full potential. What kinds of supports and accommodation do I need to sit here and speak to you today? We would like to put into place those things for everybody in society to reach their full potential and enjoy life.
For my two children, one is classic and barely speaks and one has Asperger's and is talkative. Parts of their autism bring me great joy, but parts add a significant amount of stress to my life. I have a child who has no cognitive understanding of danger. A truck is something you run out in front of. How do you stop that behaviour when he is in the top five per cent for hyperactivity and impulsivity? There are significant challenges there. He needs to learn about the dangers in this world, and I need to help protect him. That does not mean I want to extinguish the features that make him unique and interesting, but I want to teach him how to operate and live in the world.
Ms. Lanthier: I think we both feel strongly that Michelle Dawson is an extraordinary human being. She has reached a potential that is her potential, and it is extraordinary.
Ms. Fenton: But not all individuals on the spectrum can reach that potential.
The Chairman: To finish off this session, the Minister of Health a few days ago made an announcement. I believe Autism Society Canada was there in support on the platform. Perhaps you can speak to how satisfied you are with that direction. I believe today in your presentation you call for a national strategy, and I do not think that a national strategy was part of his presentation. If you feel he needs to do more, did you tell him that while you were there on the platform with him?
Ms. Fenton: Yes: It was a modest first step. We indicated to him that this announcement was a modest first step. As we have heard from members of the community and as Senator Cochrane said, individuals with autism need to be consulted also.
The key part of developing a national autism strategy is to have all the stakeholders sit down together at a table. That means all the members of the community, individuals on the autism spectrum, professionals, the provinces and all the governments, not only in health but in education and social services, must come together and figure out what kind of strategy we need to put into place so that individuals on the spectrum can reach their fullest potential.
The Chairman: Thank you to both of you. You have been helpful to us this morning.
Our next witnesses are, first, Jean Lewis, founding director of Families for Early Autism Treatment, FEAT. This organization is based in British Columbia. It was established in 1996. It is a non-profit society dedicated to medically necessary autism treatment. Ms. Lewis is the mother of two sons, one of whom was diagnosed with autism in 1996.
Laurie Mawlam is here on behalf of Autism Canada. Ms. Mawlam is Executive Director of Autism Canada, a non-profit organization whose mission is to find the causes and cure for autism.
Finally, we have David Mikkelsen, Executive Director of Autism Treatment Services of Canada, a position he has held since 1980. Mr. Mikkelsen has a lot of in-depth experience in this area.
We will start with Ms. Lewis.
Jean Lewis, Director, Families for Early Autism Treatment: I will make my remarks brief. I would like to begin with a bedtime story.
Shortly before I left to come to Ottawa, I was saying good night to our 14-year-old son James, who is two years older than his autistic brother Aaron. I sensed something was terribly wrong as I tucked him in. It was true; a mother's intuition is always correct. It turned out that at school that day, he and his classmates had viewed a video, and the video was about Duplessis's orphans. I am sure you all know about Duplessis's orphans in the 1930s in Quebec.
A shot in the video showed a young autistic boy and the treatment that he was receiving in the orphanage. The shot opened the discussion about why he was not receiving treatment in the 1930s and how today in Canada, in 2006, autistic children are still not receiving treatment.
The conversation was disturbing coming from the innocence of a child who gets it. The anxiety that he and all the rest of the siblings face and the emotional turmoil over the uncertain future of their siblings is not to be measured.
Today, autistic children are still orphans of Canada's health care system. This situation is not acceptable. We want medicare coverage for autism treatment and we want it now.
It is beyond debate that applied behavioural analysis, ABA, or intensive behaviour intervention, IBI, is a science-based, effective treatment for children with autism on the spectrum. It is beyond debate that this treatment is medically necessary. It has been tested in the crucible of litigation, time and time again, in the courts of British Columbia and Ontario, and the courts have found it as fact. Further discussion is not helpful. The B.C. Court of Appeal had it exactly right in the Auton case when the court held that autism is a socially constructed handicap. Children faced with this disability are treated less worthy of help than others with transitory medical problems or adults in need of mental health therapy. This situation is not acceptable.
FEAT B.C. has been fighting health care bureaucrats for over 10 years to receive what is medically and rightfully due to children with autism, which is medicare coverage for their medically necessary treatment.
Until the Supreme Court of Canada decision in Auton two years ago, we relied mostly on the legal process. To some extent, we still do. That is why we are here today. We are here because the Supreme Court of Canada told us to become political.
I am here with two other B.C. mothers of autistic children, Roxanne Black and Jennifer Ralph.
Some people ask how much it will cost to treat autistic children. We say it will cost a great deal less than not providing such treatment. In the 10 years since we began to fight for medicare coverage for science-based autism treatment, consider this: How many children have been diagnosed with autism spectrum disorder in Canada? How many families with untreated autistic children have been blown apart or forced into financial ruin? How many siblings of autistic children have faced the anxiety that my son James has expressed? How much money has been spent on warehousing autistic children in dysfunctional group homes, foster homes or brutalizing institutions? How much potential contribution to Canadian society and to our economy has been lost due to the failure to provide medicare coverage for the treatment of autism? These questions are all compelling.
The time for questions and debate is passed. It is time for action. The glacial pace of bureaucratic time amounts to an almost wilful failure to act. It is reckless disregard for our children. It is not acceptable. We want medicare coverage for the treatment of autism, and we need it now.
It is often said that there is no sense of urgency about anything in this city. If so, perhaps it is due to a lack of sufficient and focused outrage in this country at large. The seventeenth century poet William Congreve, who wrote "Hell hath no fury like a woman scorned," obviously has not met mothers of children who have been denied medically necessary treatment by a myopic political class and a blinkered obdurate bureaucracy.
Of course, medicare coverage for the treatment of autism can be provided by our national government. The Canada Health Act is not divine scripture; it is the work of fallible humankind. It can be improved. It is a matter of political will. Speaking of political will, the announcement of Health Minister Tony Clement this past Tuesday concerning this federal government's approach to autism is the worst of the worst that Ottawa produces. It is the Romanow commission co-joined with the gun registry. It is also cheap politics. Mr. Clement is trying to upstage the Liberals and the NDP, who have been working cooperatively on a parliamentary motion proposing a national autism strategy. Mr. Clement is playing politics with the lives of autistic children and their fragile families. He should be ashamed of himself.
Families for Early Autism Treatment B.C. intends to be active in the next federal election campaign. We will focus our efforts on certain constituencies in the suburbs of Toronto and Vancouver, and some in rural Ontario, in which the margin of victory last time was less than 4 per cent. In many cases, it was less than 2 per cent. It seems clear from Tuesday's announcement that Parry Sound-Muskoka will be one of them. We will work to elect or re-elect MPs who demonstrate the most sincere commitment to helping us meet our objective. We believe politicians operate according to the motto of the late U.S. Senator Everett Dirksen "When I feel the heat, I see the light."
We hope and, frankly, expect that this Senate committee will encourage the Government of Canada to do the morally right and economically sensible thing, which is to provide medicare coverage for autism treatment now.
Laurie Mawlam, Executive Director, Autism Canada: It is a pleasure and honour to be here today on behalf of the Autism Canada foundation.
Autism Canada is a registered Canadian charity founded by parents, all of whom had a child or children diagnosed with autism spectrum disorder. Today, at least 50 per cent of our board of directors must have a child diagnosed with autism so as never to lose sight of the issues surrounding raising a child with autism.
Our mandate is to engage in power, and educate and unite people to find the cause and a cure. We believe autism is a medical condition, not only a behavioural problem. Autism is a dysfunction of many body systems, including the gastrointestinal tract, the immune system and the hepatic, endocrine and nervous systems.
Despite a common misconception, a vast amount of scientific evidence substantiates the use of specific nutritional and biomedical interventions for autistic individuals. I have attached in Appendix 1 a collection of 255 peer-reviewed medical journal articles, collated by Theresa Binstock, who is a researcher in developmental and behavioural neuroanatomy. I have also attached Appendix II, which are ratings from over 23,000 parents of behavioural effects of biomedical interventions collected by the Autism Research Institute since 1967.
Nutritional and biomedical interventions must be recognized as valuable and necessary, and combined with behavioural treatments.
We share the concerns of others. The waiting time for diagnosis is too long. The waiting period for treatments is too long. The public education system does not have the resources, nor in some cases the knowledge, to work effectively with children who are autistic.
Our other concern that you may not have heard as much about is that mainstream medicine is not aware of the effective biomedical interventions, or is not trained to treat autistic individuals on an individual basis. I have had the good fortune to attend autism conferences in Canada and the United States, where medical doctors have presented case studies to show how biomedical treatments have helped effectively eliminate self-injurious behaviour and repetitive behaviour considered to be part of the condition of being autistic.
We have learned through scientific evidence and direct observation that many autistic individuals have gastrointestinal issues, headaches, food allergies, vitamin deficiencies, immune system abnormalities, detoxification inabilities and environmental sensitivities. Autistic children cannot often express the discomfort they feel. Finding doctors who will look past the autism and treat medical symptoms is rare.
Another concern is that medical testing and nutritional supplements are not covered consistently as a medical expense under the Income Tax Act, although deemed medically necessary by licensed health care professionals.
Doctor Ben Gibbard of the University of Calgary stated at the American Academy of Child and Adolescent Psychiatry meeting this year that almost every autistic patient — 93.8 per cent — that he surveyed received some form of nutritional and dietary intervention. Appendix III of my submission is an article published in MedPage Today, dated October 27, 2006, that also gives some examples of Dr. Gibbard's findings from the survey he conducted in Alberta.
At the end of the article, Dr. Margaret Weiss of the University of British Columbia comments that while some may dismiss the helpful ratings as placebo effect, these ratings may be better treated as open-label or case reports that can point research in the right direction. She said, "If we got placebo effects like that in our stimulant trials, stimulants would be off the market."
Turning to number six, my last concern, little scientific research attempts to use a multidisciplinary approach to find common causes for the disparate neurological, gastrointestinal and immunological aspects of autism. Currently, government-funded research is focused primarily on the genetic puzzle of autism and behaviour modification, with some work in brain imaging. Please note that we acknowledge all these contributions. Our view is that we need to promote university-based research using a multidisciplinary approach, pulling specialists from all biomedical disciplines, and looking at novel hypotheses. We are excited about the recent research in the biology of autism, brain growth and inflammation and immune and digestive system disturbances in conjunction with environment, genetics and behaviour. We believe this research is where we will find the answers to stop this epidemic.
We want to bridge the gap between observation and good evidence-based medicine. Hence, this is why Autism Canada was created. We praise the efforts of the multi-disciplinary approach seen at the Kilee Patchell Evans Autism Research Group at the University of Western Ontario and the collaborative approach at Queen's University, Harvard University and Johns Hopkins University. The Kilee Patchell-Evans Autism Research Group, directed by Dr. Derrick MacFabe, recently had their work published in Behavioural Brain Research. I have attached that as Appendix IV.
The research focused on the component, propionic acid, which was used in an animal-based model to show symptoms of hyperactivity, repetitive behaviour and social impairments that resemble autism. Science holds the answer to this medical condition.
In concluding, I hold my head high and say autism is treatable. There is hope out there. It is not an easy road, but it can be done. I know this because my son was diagnosed in July of 2000 and is no longer considered autistic. I am criticized for making this statement and I am told repeatedly that "Tommy must have been misdiagnosed or is still autistic." He was not misdiagnosed, and today, he is indistinguishable from other children. Parents like me make educated decisions based on scientific research and pursue a multi-disciplinary approach as the best chance at a full recovery. We want our children back.
Before I open the table to questions, I want to share that on Wednesday morning before leaving to drive to Ottawa, I checked my e-mail and found that the autism world had lost a giant angel. Dr. Bernard Rimland passed away this Tuesday. He can be credited for kiboshing the refrigerator-mum theory for autism with the publication of Infantile Autism in 1964. He started the Autism Society of America in a large part to promote behavioural modification. He started the Autism Research Institute to create a worldwide research centre and clearing house for biomedical treatments and spearheaded the Defeat Autism Now! group to identify causes of autism quickly and promote the safe and effective treatments that mainstream medicine refuses to investigate.
I have brought three additional items with me today as part of my written submission: a tribute to Dr. Bernard Rimland, if you are not aware of him; Autism Canada's fall 2006 newsletter; and a copy of the DVD documentary, Autism: There is Hope Out There.
David Mikkelsen, Executive Director, Autism Treatment Services of Canada: It is great to be here, honourable senators. I appreciate the opportunity.
Before I comment on the formal part of this presentation, it is a good news, bad news story today because the good news is, we are here, we have an interested audience and you have some passionate presenters. I cannot claim to be as passionate. I am not a parent of a child with autism. However, I have had two autistic children live in my home for a number of years.
I sat at a table across the street in about 1977. It is probably not known to Ms. Fenton, but I was one of the founding board members of the Autism Society of Canada, which was the Canadian Society for Autistic Children at the time. The incendiary Yvette Rousseau gathered some of her colleagues. She went on to become a patron of her group. We had a similar discussion. That is the bad news part; that was 29 years ago.
Although we have come a ways, I do not think we have come as far as we might expect over 29 years. Having said that, thank you for this opportunity.
Over the course of your study of autism, I am certain you have discovered there are great differences in treatment philosophies, availability of services, and funding levels for services to people with autism across the country. Indeed, it serves little purpose for me to reiterate that situation and talk about those facts.
Instead, I want to comment about what we at Autism Treatment Services of Canada feel is at the heart of our current inability to meet adequately the diverse intensive treatment, educational and support requirements of people with autism and their families, and that is the lack of capacity-building and the lack of capacity in our country.
Although it is a chicken-and-egg scenario, we need the funds to build capacity. You could throw $2 million at us today, and we probably could not meet the need because we do not have the individuals with the training. We do not have the political and societal will. It is not necessarily due to the economics of a particular region. Legislators always seem to find funds for certain projects or services. It is due to differing political and social priorities across the country, and how can you argue with that?
There is a shortage of nurses, so schools create more spaces to train nurses. It makes sense. However, creating more spaces is a bit of a misnomer: They do not always create new spaces. They convert existing spaces in other faculties. We believe there has been an overall reduction in classroom space for rehabilitation studies, child care and the like to accommodate these other important priorities, and you cannot argue with them.
The outcome, though, is fewer frontline workers graduating to meet the growing needs; moreover, most graduate training programs do not provide specific training around long-term autism treatment. Providing a six-week training block for an individual is different from providing a three-year intensive long-term program.
In some cases, allowing untrained people to administer programs in the interest of capacity-building compromises quality. Trained clinicians have little or no time to mentor or provide other training because they have such heavy caseloads. Non-profit service providers compete head to head with the health system for professional staff, but the salary differential does not put them in the ballpark. Therefore, even if non-profit service providers can recruit successfully, they often as not become a training ground for the health system and family-based programming for those people who are fortunate enough to be able to provide it. We have created a situation where the squeaky wheel gets the grease. Educated, informed and articulate parents can advocate effectively for their child, while less confident parents and new Canadians with different language skills and experience must painfully navigate the murky waters of a huge system to meet the simple basic needs of the child. As we have heard already, the wait lists are unbelievable. If parents cannot stand up and fight for themselves or their child to make and stay on that list and maybe jump the queue, they have no hope.
Without the political will and community support to make autism a priority, things will not change. The end result will be a fragmented collection of autism treatment services across Canada, and I use "treatment" in the largest perspective. That treatment includes psychology, speech and language pathology, occupational therapy, education and the like.
There is no coordination, and no recognized and accepted set of best-practice standards. In fact, many services lack evidence-based approaches to treatment all together. Yet they still have unbelievable wait times for those services.
The lack of trained professionals or ones, while sufficiently trained, who choose to use their skills in other areas because they receive greater remuneration and experience less frustration is another important matter that is not being addressed.
Poor public awareness and education about autism and a dearth of lifespan services complicates the picture. On this latter point, there is not a province or territory in Canada that adequately funds appropriate services from birth to death. Either they serve children from the age of two or three to 19 or 20, whatever the cut-off is, with little support into adulthood, or they do little for the younger years and provide services for the adult population only.
Another provincial issue is the turf wars that seem to take place between ministries. Numerous efforts have been made to coordinate education, children's services and health across the country, but the outcome always seems to be the creation of inter-ministerial committees or working groups that have no authority or ability to recommend or implement recommendations.
Regardless, we have an ever-growing number of people with autism spectrum disorder whose needs are unmet because of this perfect-storm scenario.
What do we do? We have a number of suggestions, although the list is not exhaustive: develop a comprehensive set of standards of service or best practices in diagnosis, treatment and follow up services; support increased research to identify critical treatment elements; and develop tools that ensure treatment fidelity to develop effective treatment manuals. We feel that a number of good studies are underway right now regarding the etiology of autism. However, what is missing, as the other speakers have commented, is practical research on the number of methods out there. This type of research is critical to those developing standards and best practice documents. We should also do the following: encourage educational institutions to incorporate specific training for ASD in graduate residency, certification and other educational programs — in a word, provide bursaries for advanced training in autism treatment, which would include individuals currently working in the field, so we can keep them in the field; and encourage governments to support educational institutions to increase classroom space in human service education and training, specific to autism, of course, because that is our role here today, but also in general. Human service workers are not valued by our society. It is an unfortunate reality.
We should also compensate staff adequately who work in the field so they pursue careers in the field of human services with particular emphasis on autism. We should ensure that services are equitably distributed across the country, including in rural communities. These services could include computer-based training or Telehealth services to the outlying communities. Presently, people who live in rural Canada are out of luck, or they travel for days to try to access minimal services for their child.
We request support legislation requiring insurance companies to cover funding for autism services, as the companies do for any other medical condition. We want to encourage families to continue putting pressure on legislators to support autism services. We want to see support for the development of professional supports to help families develop coping skills, resilience and strength to raise children with autism. Those of us around the table who do not have a child with autism do not know what these parents go through.
We want to see support for cross-ministerial collaboration that truly has the ability to affect change. Ms. Lanthier and Ms. Fenton both talked about a national autism strategy. It makes perfect sense and is something we support.
As I have stated, this list is not exhaustive, and further discussion is required. Regardless, your committee work is a good beginning, and you are to be commended for your initiative to learn about this complex disorder.
Although the focus of the committee is autism, building capacity for autism will have a spin-off effect and result in increased services for other disability groups.
Thank you for your time today. Your support in our efforts to establish a better world for people with autism and their families is greatly appreciated.
The Chairman: Thank you. The committee will engage with you in dialogue and questions. However, we need to keep it brief.
Senator St. Germain: Thank you all for appearing. I especially would like to thank Ms. Lewis, Ms. Ralph and Ms. Black. I know how far you have travelled as I travel that distance every week.
I will be brief. I think a lot of research has been accomplished in the study of autism. I direct my question to Ms. Lewis.
Colleagues, I have met with these people in British Columbia previously. By the way, I have a niece that has two sons who are autistic. I never realized until Ms. Lewis presented and when I met Ms. Black at a summer event at my place what was happening to that beautiful young woman: of how she was deteriorating in front of our eyes as the result of the pressures brought on by raising two autistic children.
I do not profess to be a champion, but hopefully I can help in some small way. We know what the problem is. How are you funded? Are you receiving any funding to deal with autism in children of a young age?
Ms. Lewis: Are you inquiring about FEAT?
Senator St. Germain: Yes.
Ms. Lewis: We receive no money. We are a 100-per-cent parent volunteer professional advocacy group. In fact, we refuse to accept government funding because, by definition, we cannot advocate if we are in the trough.
We have one goal, and that is to include science-based medically necessary autism treatment in medicare so our kids have access to health care for their core health needs like every other Canadian. That is why FEAT exists.
Senator St. Germain: What do you think we could do to develop a national strategy?
Ms. Lewis: Amend the Canada Health Act to include ABA/IBI services in the guidelines.
This debate around jurisdictional issues is disingenuous. This discussion that the Canada Health Act is inviolate and cannot be touched because it would cause a constitutional crisis: we need to get real here.
Amending the guidelines of the Canada Health Act will not cause a constitutional crisis. It will solve most of this problem. It will allow children to access what science today tells us is best practice. That is not opinion. That is finding of fact by seven judges in this country and hundreds in the United States, plus the U.S. Surgeon General.
The idea that we still need to figure out the best thing to do is ridiculous. We know the best thing to do. We need to amend the Canada Health Act and include it in the list of services so families from coast to coast to coast in this country can have the same access to health care as every other Canadian. This is discrimination at its finest. Does that answer your question?
Senator St. Germain: Thank you.
Senator Munson: I know what you are saying, but the machinery of government moves slowly. It is a slow process.
In the meantime, on the applied behavioural analysis and the intensive behaviour interventions we have talked about — the repetitive helping and teaching of a child — how many qualified specialists do we have in this country? What can we do as a committee in the sense of a marshal plan to address this issue?
The wait lists are unbelievable, as stated. How many are on the wait list? Could an envelope of money be directed from the federal government toward the provinces to deal with what is a need today?
Ms. Mawlam: I absolutely agree that a parcel of money is mandatory. It is almost like Hurricane Katrina: We need it.
In Ontario we heard Minister Chambers say 900 families with autistic individuals receive services and 1,000 are on the waiting list. The provincial government needs to communicate to the federal government that we need double that amount of money so we do not have anyone on that waiting list.
Ms. Lewis: The federal government has health accords with the provinces for a number of things: heart surgery, cataract surgery and hip replacement surgery. There are all sorts of ways to create money for the provinces.
Senator Munson: Where and how are these professionals trained?
Ms. Lewis: That is a problem in this country. The first priority from our perspective, something the federal government can assist with, is including treatment funding in the universal health care system because of the comprehensive nature of universal health care.
In terms of training the treatment professionals in the protocol of applied behavioural analysis, we need the federal government to provide money to the provinces to endow academic chairs in every province so we can create our own home-grown treatment professionals in this country in the applied behavioural analysis protocol.
Presently, parents using science-based ABA to a large extent must go to the U.S. to find the professionals and bring them here. Some professionals exist in Canada. In British Columbia, for example, there are probably up to 10 professionals who we consider bona fide.
Senator Munson: Only 10?
Ms. Lewis: Yes, it is not many. That problem can be solved by endowing academic chairs at the universities in Canada.
Mr. Mikkelsen: I absolutely respect the comment about ABA and putting it in the guidelines of the Canada Health Act, except that ABA is not the only game in town. We must broaden that.
There is a lot of research on empirically based approaches that deal with children with disabilities. Some techniques work for some children but not for others. We have heard from people earlier today that, fortunately, ABA works for one individual's daughter but unfortunately, does not work for other children.
Guidelines must be broader. We need to encourage an epidemiological study that looks at the cost of immediate treatment and intensive treatment, whether it is ABA or something else in the short term versus long-term care in housing and residential programs for untreated people, and start to really focus on that window of opportunity with young children to make these treatments work. However, I do not think we want to limit ourselves to one particular intervention that effectively takes choice away from parents.
Ms. Mawlam: I want to put on my mother hat right now. I was trained to run my son's one-on-one home-based program and then I trained the individuals that worked with them. I had that professional come into my home once a month to give me more training and to give my workers and my volunteers more training. I acknowledge that not every mom can do what I did, but some can. I think if we are going to open up a parcel of money, there are moms out there already doing treatment programs and they are financially stricken. We need to look after them and the ones who cannot do the treatment themselves we need to provide those services: we need to provide those services for every Canadian.
I concur with Mr. Mikkelsen that I did not do an ABA program. I did an IBI program, which incorporated something called "Sunrise" as well as "Brain Gym" and all kinds of other things. Every child is an individual. Often in severely autistic individuals that do not respond well to ABA, there is a biomedical reason behind it. We see children that head-bang, bite themselves or flail.
Recently, at the international symposium the Geneva centre in Toronto, Dr. Margaret Bowman who is a neurologist, and Dr. Timothy Buie, who is a gastroenterologist, presented together. They showed three cases — a video before and after — of children that, once treated for gastrointestinal issues, their self-abusive and behavioural ticks stopped. I believe these children, in a lot of cases, are simply looking after themselves. They need biomedical attention to make them better able to learn, do well and prosper in their IBI programs.
Senator Cordy: I would like to follow up on that comment. How difficult is it for you as a parent — and I know you are not, Mr. Mikkelsen — to take your autistic child to the emergency department for a physical illness or for an injury. My guess is that it is not easy, and how could it be made easier?
Ms. Mawlam: Unless someone really needs to go to emergency, I do not know why one would go. I do not know how they will help in most cases.
I found the best thing was to speak to other parents that found physicians and licensed health care practitioners who understood the biomedical co-issues surrounding autistic individuals. Basically parents work hard at having a relationship or a door open there. They do exist in Canada and they are growing. They are growing because their children are autistic as well and they leave no stone unturned to implement the best possible treatment for their own child. Then they incorporate that treatment into their practices.
Senator Cordy: Then the family looks for somebody they can phone before they need to go to emergency or to a doctor's office and have somebody look at them.
Ms. Lewis: Generally these children are underserved in that period. To follow up on ABA/IBI, the science is clear on best practices. The data says that roughly 5 per cent of kids do not respond to ABA. That is true. However, it is clear ABA/IBI is best practices.
I would compare it to cancer therapy. There is a treatment protocol if one has prostate cancer or breast cancer. However, that does not negate the fact there are all sorts of ideas, alternative therapies and remedies that people are more than willing to try, and maybe to some great extent. That does not preclude that we will fund what we know works today. We do not stop treating people because we need to explore every avenue of treatment.
Senator Cordy: That leads to my next question, which deals with best practices. I am not talking only about ABA, IBI or specific models to follow in terms of treatment. I am talking about overall programs, including assistance to families. Are good things happening anywhere, either inside or outside of Canada? How much sharing is going on about good things that are working?
Ms. Lewis: I do not know what you mean by "good things."
Ms. Mawlam: Perhaps I can comment. There is excellent research. I pointed out the Kilee Patchell-Evans research group. Minister Chambers has appointed an autism chair at the University of Western Ontario. I think that is fantastic. We have doctors that understand how to treat an individual as an individual and look past the autism. That is wonderful, and there are more of those doctors all the time. I think what we are doing today is a step in the right direction.
Mr. Mikkelsen: A lot of good things are going on across the country. The Society for the Treatment of Autism in Calgary runs Margaret House Treatment Centre. It has been around since 1976 and it does great work.
In relation to the sharing, there is no time to share. When they are barely keeping their head above water trying to meet the ever-growing need within the population, they are hard-pressed to find the time to mentor, to train, or to find time to share.
To go to your major point, it is critical that a set of best practice standards be developed nationally and adopted to maintain some kind of consistency. We must look at our rural neighbours and those people in outlying communities that we never hear about. They are not here at this table and they cannot come to the table in many instances.
Good things are happening though. We only have to make it gel somehow.
Senator Cochrane: We just heard from the Autism Society Canada. Can each one of you tell me, are you part of the Autism Society Canada?
Mr. Mikkelsen: We are an independent organization.
Senator Cochrane: Do some of you agree on a national autistic strategy?
Ms. Mawlam: Absolutely.
Senator Cochrane: You have heard the former witnesses. Are some of the issues within that strategy the same as you would propose, or are there new ones within that strategy?
Mr. Mikkelsen: It is a conversation that must occur. The few moments that we have here to relay a few thoughts quickly do not even scratch the surface. There are hundreds of issues that must be addressed. I think too we need to be respectful of the fact that there are a number of disabilities as well. We can choreograph a national strategy in such a way that there will be positive spin-off to help those folks as well.
Senator Cochrane: It has been argued that rather than providing funding to the provinces and territories for the purpose of autism therapy that the federal government should provide tax breaks to families.
We have been told that the federal government currently provides, under the Income Tax Act, a number of tax relief measures to families of children with disabilities that are also available to families with autistic children.
Ms. Mawlam: I will put on my mother hat again. The paediatrician that supervised my son's interventions is also a mother of an autistic child. I chose to do hundreds upon thousands of hours of one-on-one intervention, IBI. On top of that, I changed my child's diet and supplemented him with things such as pro-biotics, essential fatty acids, vitamins that he was deficient in, zinc for healing and Vitamin A, et cetera. I claimed those items as a medical expense. Before I did I said that I practice preventive medicine. They went through.
Any family who is audited, these things would not go through. Even with the pediatrician's letter and receipt, because you can get these items from pediatricians at cost. There is no profit made here. I think that is wrong. It was not covered. That needs to be opened up. If these children are deficient or they need supplements to help them with their liver, for example — liver support — because it is not a pharmaceutical, it is a nutraceutical, we still need to recognize it as a medically necessary item and cover it under the Income Tax Act.
Ms. Lewis: We cannot write off 100 per cent of any of our medical expenses around treatment. We can write off only 13 per cent. It is a small amount. We have been audited, I think, five times. This therapy costs $50,000 a year.
Ms. Mawlam: I probably spend between $6,000 and $10,000 per year on nutraceuticals alone. The difference in the diet is more expensive as well. Of course, I get back only a percentage under the Income Tax Act. That area should be examined.
Ms. Lewis: Tax credits should be examined as well.
Senator Cochrane: That would be an important factor there.
Mr. Mikkelsen: Any kind of breaks that parents can be given are well deserved. As I mentioned earlier, we cannot imagine what they go through either emotionally or financially. It is considerable.
The Chairman: Are there any differences in your organizations in terms of how you approach the issues we are talking about? Do you have agreements or are you all in agreement with the basic message?
Ms. Lewis: We have to be clear. FEAT B.C. advocates only for what we know, for what science has told us are best practices. We do not endorse many of the alternative treatments we have heard about around the table, although many people do.
We are talking about funding for treatment within a universal health act. We better be careful. We are partners but we are also taxpayers. We better be careful that we put the money toward what we know works today. Something better could come along, and that is what research and good science does.
Ms. Mawlam: The Autism Canada foundation believes in a multidisciplinary approach to treatment and research. We believe science will find the way, and that autism is a medical condition affecting many systems within our body. We believe that science has shown that. We believe more science must be done. It is not a cookie-cutter affair. One thing that works for one will not work for another. We need experienced and accredited professionals who have the gift to see our children and know what is best for them.
I want to add that we need to listen to the parents. The parents know their children. That is important.
Mr. Mikkelsen: We, too, support a multidisciplinary approach, including the parents who are valuable members of the treatment team. Many professionals are committed to dealing with autism and its related difficulties in speech and language, psychology, occupational therapy, education and medicine. These professionals have important information and important things to say. It has been our experience over the last 26 or 27 years that it is an effective way to go.
Senator Munson: Because we are in politics, the word "national" implies federal leadership. To me, federal leadership implies Health Minister Tony Clement. As he said yesterday, it was a modest approach to dealing with autism.
Have any of your groups sat down or asked for a meeting to urge the minister to convene a first ministers' conference or a health ministers' conference? It is nice for us to hear from specialists in a round-table discussion a couple of weeks from now. We talk and listen. Not many reporters cover this today, but we are trying to get this message out.
Whether it is a Conservative government, a Liberal government or whatever the government is, the first step in terms of national leadership from my perspective is a meeting between the big players who have the money.
Ms. Lewis: The health minister's office contacted me last Friday. A tentative meeting was arranged but not confirmed. However, for at least the last two weeks, the health minister's office knew that I and my colleagues from FEAT were coming to Ottawa. We were not made aware of the announcement on Monday. We were not invited to the press conference.
Senator Munson: To me it is about partnerships.
Ms. Mawlam: When I think of a national strategy, I think of public awareness. I think of consistency in treatment. I think of a national strategy that will lead research. We need one. There is a huge role for the federal government in mentoring the provinces and providing two-way communication to help our families.
Mr. Mikkelsen: Unless the ministers or the big guns are involved, a national strategy will go nowhere. I have been part of dozens of coordinating councils, focus groups and this sort of thing. The minister sends the assistant deputy minister, if we are lucky; or the assistant deputy minister's assistant, if we are average. We do all of this work. We make all these wonderful recommendations and then it stops at somebody's desk. Nobody knows where or why. Until we have the buy-in at the provincial level by the guns it will not happen.
The Chairman: I thank all three of you for appearing, for giving us your message and for engaging in a question- and-answer period.
The committee adjourned.