Subcommittee on Neurological Disease Committee on Dec. 9th, 2010

[The Chair, Conservative, Joy Smith]

[Inaudible--Editor]...we are going through the study of autism, something that's been of paramount importance to our committee.

I welcome Mike Lake here today as part of our committee.

We have a number of witnesses today.

We have Laurie Mawlam, who is executive director of Autism Canada Foundation and also with the leadership committee of the Canadian Autism Spectrum Disorders Alliance.

That's a long title, Laurie. Good morning, it's nice to see you.

From Autism Society Canada we have Kathleen Provost, executive director, also with the leadership committee of Canadian Autism Spectrum Disorders Alliance.

Kathleen, welcome.

Suzanne Lanthier is executive director of Autism Speaks Canada, and from the Canadian Paediatric Society we have Dr. Wendy Roberts.

Welcome to you both.

We're going to start with ten-minute presentations from each, and I think I'll start with Laurie....

Yes, Mr. Lake.

[Mike Lake, Conservative, Edmonton—Mill Woods—Beaumont, AB]

Madam Chair, on a point of order, I know it would be very unusual, but I wouldn't mind having my son Jaden sit at the table with me.

I would just ask the other members of the committee if that would be okay.

[The Chair, Conservative, Joy Smith]

Oh, absolutely.

[Mike Lake, Conservative, Edmonton—Mill Woods—Beaumont, AB]

Jaden, come over and sit here.

[The Chair, Conservative, Joy Smith]

Hi, Jaden. Welcome to our committee. I'm so glad you're here today. This is wonderful.

I was a teacher for 23 years. When I was a resource teacher, I taught for three years a class of children who had autism, and they're just very wonderful children.

So welcome, Jaden.

Laurie, please go ahead.

[Laurie Mawlam, Executive Director, Autism Canada Foundation, and Member, Leadership Committee, Canadian Autism Spectrum Disorders Alliance]

While I'm the executive director for Autism Canada Foundation, Autism Canada is also a proud member of the Canadian Autism Spectrum Disorders Alliance. I'd like to make a very short presentation from Autism Canada Foundation, and then, together with Kathleen Provost, who is also on the leadership committee of CASDA, we'll do a presentation on behalf of 38 autism organizations from coast to coast.

When I got the invitation last Thursday to be here, one of the first things I did was pull the report we had submitted to the standing Senate committee and read it. I could have easily just changed the information on our board of directors and submitted the same report.

That said, I'm really optimistic that we're ready to do something.

There are three things I'd like to point out from Autism Canada Foundation's perspective that I don't think you will hear from the other organizations--or maybe you will, but just so there's not so much duplication.

Number one is what brought Autism Canada Foundation together: we believe autism is a whole-body disorder, and all of our board members, including me, have a child who's been diagnosed with autism.

I'd like to reference a paper that was published in clinical neuropsychology in 2005 called “Autism: a brain disorder or a disorder that affects the brain?” It was written by Dr. Martha Herbert. While autism is defined behaviorally, and historically has been thought to be a brain-based, strongly genetic disorder, emerging evidence and hypotheses support a broader-based model, viewing it as a systemic disease, likely due to the interplay between genetics and the environment.

I also did a PubMed search of oxidative stress and autism, and found 82 documented papers from multiple countries. I then did a PubMed search on immune system dysfunction and autism, and found 253 papers published.

In January 2010 the journal Pediatrics published a paper entitled “Evaluation, Diagnosis, and Treatment of Gastrointestinal Disorders in Individuals With ASDs: A Consensus Report”. The report made 23 consensus statements and went on to conclude:Recognition that problem behaviours might indicate an underlying medical condition will facilitate diagnosis and treatment and ultimately improve the quality of life for many persons with ASDs.

I ask you, isn't this what we all want--to improve the quality of life for individuals with ASDs?

There's also strong clinical evidence that treating medical problems that present with autism, or perhaps are part of the autism, have a profound effect on that person's ability to function and learn, accompanied by improvements in autistic symptoms.

To summarize, I'd just like to say that if you're not feeling well, how well do you function?

I'd also like to talk about coming off the spectrum: recovery. The word “cure” even comes up at times. I just want to say that people are writing books about it. Researchers, neurologists, doctors, service providers, and autism organizations are talking about it and acknowledging it.

Dr. Martha Herbert wrote a paper for the Autism Advocate. I've pulled a quote out that I'd like to share with you:We are hearing a growing number of reports of children recovering substantially or completely from their autism.

It goes on to say:Some of these recoveries are attributed to intense behavioural therapy; some to intense biomedical intervention; and many to a combination of both. Although autism has traditionally been considered incurable, the “incurability” is merely an assumption--it has never been scientifically proven.

That's food for thought for everyone here.

I'll also say that in May 2009, researchers from the University of Connecticut presented at the International Society for Autism Research that they didn't know for certain what percentage of children were capable of moving off the spectrum, but it was probably in the neighbourhood of 10% to 20%.

This was based on children recovering through ABA treatment only. How many more would there be if we combined ABA with medical treatments?

Autism Canada Foundation believes in a multidisciplinary approach to treatment. We must look beyond the behavioural diagnosis and treat the individual. All the behavioural interventions in the world can't correct things like a prolapsed rectum, colitis, strep infection, PANDAS, GERD, viral infections, clostridium infections, or immune system dysfunctions. Persons with autisms need to find their place to receive these medical treatments.

The last point I want to make is about some interesting research that's going on in Canada at the University of Western Ontario at the Kilee Patchell-Evans Autism Research Group. Dr. MacFabe has put together probably the best animal model of autism I'm aware of. But interestingly enough, he's pulled together not only social, fixation on objects, and inflammation in the brain; he's pulled it all together in this model, and it's one piece of research that deserves more attention. It could be one of many smoking guns, because we know that this is a complex disorder.

This is my message from Autism Canada. I look forward to presenting with Kathleen Provost on behalf of CASDA.

Thank you.

[The Chair, Conservative, Joy Smith]

Thank you so much. You gave some really good new information that I hadn't known. Thank you for presenting that.

Kathleen, would you like to present as well?

[Kathleen Provost, Executive Director, Leadership Committee, Canadian Autism Spectrum Disorder Alliance, Autism Society Canada]

Good morning and thank you for inviting us here today to provide you with more information on the autism spectrum.

Autism Society Canada, for almost 35 years, has been speaking as a collective voice for hundreds and thousands of families through our provincial societies, which are located in each province and territory, and we still feel we have a challenge. It is the same challenge. There is inconsistency and inequality across the country in terms of access to a health solution. Every Canadian does not yet have access to health solutions based on where they live and what happens.

The committee asked to meet with us on the subject of diagnosis. The first challenge we have is a waiting list. Everybody faces a number of time impediments and conditions that affect what happens when there is a diagnosis and then what comes after. Every province has a different solution.

Today in Canada we actually have a two-tiered health system for Canadians living with an ASD. There is a health system that is inconsistent because of where you are, what province you live in. There's also a health system that's not equally accessible. I have a bunch of quotes here, and I did a bit of research. In terms of private access, just to get a diagnosis in B.C., it could be up to $1,500. That is just to sit down and understand what's happening. We seem to have a public health system versus a private health system.

There are solutions, however, and we can establish national standards and try to establish best practices in the field of autism.

You wanted to know about treatment. There is some evidence that early intervention for children will have a positive effect in altering the impact of autism in the life of individuals. Autism treatment plans are unique for each individual. We have heard they require collaboration among many different health care professionals: medical doctors, occupational therapists, behavioural therapists, speech and language pathologists. Today in Canada, a multidisciplinary approach could cost up to $50,000 per year. This is not funded by medicare or other programs, so the accessibility might vary, depending on where you are, what you have access to, and what your needs are.

But we have solutions. A lot of resources are needed, and a lot of collaboration among government departments that can be dressed up, or designed, or invented. There exist some mechanisms for direct funding. We can do CRA adjustment regulations. There are a lot of formulas that can be found to make sure that in the end we have a zero sum for the families.

You also seek information regarding the health and economic burden associated with Canadians living with ASD as well as their caregivers. The children living with an ASD today will grow up and become adults living with an ASD. They are not a burden. They are Canadians living with a lifelong need for a continuum of support that will evolve. It will continue to evolve, just as it will for you and me; as we age, our needs will evolve.

So now what? What do we do? These individuals need access to tailored services, resources and adult treatments to enable them to become contributing members of Canadian society, just like you and me. Today in Canada, owing to a lack of appropriate supports, we continue to marginalize this group of individuals and their families. However, we are experiencing a new wave of families, those transitioning into the next phase. Parents of school-age children who are now transitioning into adulthood will still be challenged with enormous impacts if we have no implementation of changes.

You asked what the impacts on caregivers are. A family will have to use all available resources to provide treatment, even if it exceeds their ability to pay. Wouldn't you do that if it was your child? Families lose their homes, parents divorce. There is a lot of stress. Families sometimes run out of options.

The impact on siblings is enormous—emotionally, socially, and economically. They must anticipate being the support of last resort when those parents age and go away. This is our legacy for the future. The next generation will bear the impact of non-implementation.

There are solutions. The federal government has many employment programs, with support and training. We can offer tax incentives to employment, employers, and different formulas. We can extend some of our training programs that exist already.

Then there's housing. I know of adults living in a halfway house. That's not where they should be. We have federal low-income housing. Those can be extended. We can find formulas to find solutions.

Education grants can be given to support secondary education.

In conclusion, we need to address the oversight. We cannot have non-implementation. We have formulas. We have things active in our system that we just need to review, maybe be creative about.

Across the country our member societies are actively working with the provincial governments and territorial representatives for services and support. But this is not a provincial issue. There are examples of national health strategies by the federal government, so we do need to reinvent.

We turn to the federal government to provide a creative solution. Australia, the United Kingdom, the United States are doing it. They have strategies. Autism Society Canada would like to think it's time we have one in Canada.

Thank you very much.

[The Chair, Conservative, Joy Smith]

Thank you very much, Kathleen, for your insightful presentation this morning.

And now, from Autism Speaks Canada, Suzanne....

I'm sorry?

[Laurie Mawlam]

Madam Chair, we made it short so that we could present on behalf of the Canadian ASD Alliance.

[The Chair, Conservative, Joy Smith]

Absolutely.

[Laurie Mawlam]

Is that okay? Or do you want us to go at the end?

[The Chair, Conservative, Joy Smith]

No, no, just go right ahead now.

So you want to do that right now on behalf of the Canadian Autism Spectrum Disorders Alliance.

[Laurie Mawlam]

Yes. It's a group of 38 organizations—and growing—across Canada. We have a website and we have a position paper, and we'd just like to run through it.

[Kathleen Provost]

We're just going to highlight a few points that we think are important from our position paper.

CASDA came about as a result of the “Pay Now or Pay Later” report. In 2007 there were challenges amongst the community, so we did come together in a collaborative effort. As Laurie said, we are 38. We think that together we can improve our collective understanding of autism spectrum disorders and share best practices and treatment, raise awareness, and respond to the immense challenges that are faced by individuals living with an ASD, as well as their families.

We are ready to partner with the federal government. We want to work together and help to develop a national strategy. We have given a lot of thought to a few items on which we consulted our community, and we would like to share them with you.

Laurie.

[Laurie Mawlam]

I just want to recap the situation.

It's our opinion that we have a real health problem surrounding ASDs in Canada. To date, we are not doing national surveillance, but there is at least one region in Quebec and in other countries that are. I just want to share two examples.

In the region of Montérégie, Quebec, data taken from 2000 to 2007 shows the prevalence. And “prevalence” is the total number of cases of autism divided by the population, the total number in the population. So from 2000 to 2007, it went from 12 in 10,000 to 60 in 10,000. I called the public health department this week and asked if they had a more recent number, and they did. In 2009 the number went to 106 per 10,000. So that's from 12 to 60 to 106 per 10,000.

The Centers for Disease Control and Prevention released their last set of surveillance summaries on December 18, 2009. This resulted in a figure of 1%--or 1 in 110--of children in the United States classified as having an ASD. This is a 57% increase from 2002 to 2006.

In that same CDC paper, they went on to say, and I'll quote, “These results...underscore the need to regard ASDs as an urgent public health concern”.

Autism is now more common than childhood cancer, juvenile diabetes, and pediatric AIDs combined.

You may hear that this increase is a result of changing the diagnostic criteria or broadening the definition of autism; however, note that the criteria we use to diagnose autism--which we refer to as the DSM-IV, the Diagnostic and Statistical Manual of Mental Disorders, fourth edition--has not changed since 1994.

You may also hear that we just called ASD something else before, what we refer to as “diagnostic substitution”. This certainly cannot be true for the CDC data. In the Montérégie data, it does not seem apparent either.

So based on that, we'd like to discuss some points that we believe the federal government can be looking at and things that they can do.

[Kathleen Provost]

Surveillance, as we said, is a mandate of the Public Health Agency of Canada. In November 2006 the Honourable Tony Clement, then Minister of Health, announced a package of initiatives that included a consultation process to inform the development of an autism surveillance program.

Consultation to inform this development was undertaken between 2007 and 2008, and in December 2008 the minister approved a contribution of $147,000 to Queen's University to expand their existing ASD surveillance system. To date there have been no announcements from the Minister of Health or PHAC on the status of the work, but we're trying to link and stay connected.

The federal government has the key responsibility for public health issues. Currently there are over 300,000 full-time employees at PHAC working for surveillance and public health assessment, which includes some of Canada's best epidemiologists. Some of this wealth we hope could be turned towards autism. PHAC has proven its commitment to being accountable for the methodology and results and making these results accessible to the public. For this essential data to be comprehensive and credible, it should be more than outsourced. It should reside in our Canadian system under public health.

[Laurie Mawlam]

The next point we'd like to make is about best practices. The governing health bodies, including federal departments, have historically set the pace in identifying and monitoring best practices and disseminating this information across the country. We have seen this in the recommendation for waiting times in hospital emergency rooms, infection prevention and control practices, and recommended vaccine schedules. The same is needed to be done with ASDs, specifically in the areas of early screening, treatment options, the use of seclusion and restraints, educational communication interventions, transition planning, and successful independent living for adults.

As an example, in 2009 the National Autism Center in the United States released a 68-page document entitled “Findings and Conclusions of the National Standards Project”, in which well over 100 qualified individuals were involved in a report that addressed the need for evidence-based practice guidelines for ASDs.

They use an evidence classification system to rate each treatment. They rated them and gave them four categories: an established treatment, an emerging treatment, unestablished treatment, and ineffective and harmful treatment. An established treatment was one where there were well-controlled studies that showed the intervention produced beneficial effects. They also noted that it wasn't going to be effective for everyone. Then they had emerging treatments, which were ones that had some studies to support them and they were effective but not enough to say they were established. They went on to note that they weren't in a position to rule them out as not effective. Then unestablished was there was little or no evidence in the scientific literature to draw a conclusion. Again they noted there was no reason to assume this treatment was either effective or ineffective. Then, interestingly, they found no treatment had sufficient evidence to be classified as ineffective or harmful.

So it's critical that we work together to facilitate broad and accurate communication of the best practices for autism. A good starting point is to acknowledge what is established and encourage research into the investigation of emerging and unestablished treatments so we can put ourselves in the position to help more people to ensure they can make significant and meaningful progress.

[Kathleen Provost]

We think the federal government is in a unique position as a national facilitator engaging provinces and territories. The federal government can stage and maintain a national agenda for autism. Precedents exist in introducing agenda items at health ministers conferences or first ministers conferences. At present, families migrate across the country to provinces that can provide or are perceived to provide better care for their family. That has many implications for Canadians. The challenge before us is to find effective ways to leverage the strength of our federal-provincial system to advance the autism agenda in Canada so we can provide universal access to treatment and services.

Additionally, the federal government has the lead role as a health care provider for aboriginal communities. These Canadians must have access to autism spectrum disorder specific care for all individuals diagnosed. These include treatment options, supports, and services across each person's lifespan.

[Laurie Mawlam]

Another federal government mandate is research. A significant increase in ASD-specific research funding is urgently needed, with a focus on prevention and treatment.

The Canadian Autism Intervention Research Network, which we know as CAIRN, released a report this year entitled CAIRN: A guide through difficult terrain, which shared the results of an online survey asking participants what they felt research priorities should be. The number one response from 839 of the 1,003 survey participants was treatments. We need research to investigate emerging and unestablished behavioural and medical treatments, especially ones that have strong anecdotal and clinical evidence.

CASDA would like to see priority funding towards studies in the area of environmental triggers, for example. In October 2007, the Institute of Medicine released an online pre-publication of a workshop that took place April 18 to 19, 2007, called “Autism and the Environment”. The participants identified a broad range of research priorities, and they summarized it in eight pages in this document. The summary lists numerous items for further research, which we feel our federal government needs to be examining.

Dr. Landrigan told the interagency autism committee that:

It has been known for years that environmental toxicants are especially harmful to the developing brains of fetuses and infants. A 1993 report by the National Academies Press, “Pesticides in the Diets of Infants and Children,” stated that young children are not “little adults,” and they detoxify and excrete chemicals very differently than adults. It has also long been suspected that children with autism are more susceptible to environmental toxicants than other children.

It is time to make environmental triggers a priority.

The last point I'll make is on financial assistance to families. We need the office of the Minister of Finance to review the Income Tax Act so that expenditures for treatments and services can be used as medical expenses on families' federal tax returns.

We hear repeatedly from families that they are being audited for items that are being recommended by licensed professionals, such as pediatricians, psychologists, occupational therapists, speech pathologists, and nutritionists. Lately families have been audited with regard to the qualifications of the service providers they've hired to provide behavioural interventions.

Families with members with ASD perceive they're being audited with greater than average frequency. Their lives are fraught with the continued need to fight for their family member's needs. They should not be left to fight the government too.

[Kathleen Provost]

Autism spectrum disorder has received considerable attention in the media recently, and some public funding.

[The Chair, Conservative, Joy Smith]

Kathleen, can I ask you how much longer? I've given you a lot of time.

[Kathleen Provost]

This is my last point.

[The Chair, Conservative, Joy Smith]

Okay. We can't miss that last point.

[Kathleen Provost]

We just want to say that despite the perceived lack of reliable information, we think there's a great need and value to ensuring that we continue to inform communities about ASD.

To conclude, we would like the Canadian Autism Spectrum Disorders Alliance to work together with the federal government and all its organizations in order to develop a national strategy, all while representing Canadians living with ASDs across the country.

It is CASDA's request that the Minister of Health seize this opportunity to champion a national ASD strategy in collaboration with all provinces.

Canadians expect national public health to be addressed by the federal government, with options and solutions tailored for all Canadians.