Brief to the Senate Inquiry on Funding for Autism Treatment

	CAIRN Brief to the Senate Standing Committee on Social Affairs, Science and Technology   Autism Spectrum Disorders: The Key Role of Knowledge Creation and Dissemination
	Presented by Dr. Peter Szatmari Director of the Offord Centre for Child Studies and Founding Member of the Canadian Autism Intervention Research Network (CAIRN)   Ottawa, Ontario November 22, 2006

Honourable Senators,

I am deeply grateful for the opportunity as a representative of the Canadian Autism Intervention Research Network (CAIRN) to address you today and to highlight certain issues that I feel will lead to progress in deciding whether or not to develop a National Autism Strategy and what to do about the incredibly complex and tragic situation of families and children with this disorder. 

The Senate deserves a lot of credit for focusing on the plight of children and families afflicted with Autism Spectrum Disorders (ASD). I am proud to be part of this venture and I am sure that good will come of it.

The definition of a “cairn” is a group of stones piled on top of each other that represents a guidepost on a journey.  That was exactly what my colleagues and I had in mind when we set about establishing CAIRN almost ten years ago. 

CAIRN and the development of a national research strategy in autism

We were struck by the enormous ill will, animosity and lack
of understanding among parents, officials, scientists
and front-line clinicians around the best types
of intervention for children with autism.

We were struck by the enormous ill will, animosity and lack of understanding among parents, government officials, scientists and front-line clinicians around the best types of intervention for children with autism.  We decided that we wanted to establish a network of scientists, parents, front-line clinicians and government policy makers to work together to develop a research agenda in early intervention in autism.  This agenda would set out a program of research that would provide the essential knowledge needed to serve as guideposts on a journey that would take children with ASD from early diagnosis to a more successful developmental pathway in adulthood.

With some funding from CIHR’s Institute of Neuroscience, Mental Health and Addiction, as well as from The Lawson Foundation, we held four “Opportunity” workshops from 2000 to 2004 bringing together, parents, scientists, front-line clinicians and policy makers from across the country.  At these workshops, we tried to briefly to summarize the existing scientific evidence on the effectiveness of early intervention and, together with parents, clinicians and policy makers, to identify the important evidence gaps in the field. 

As scientists, we wanted to know what essential questions still needed
to be addressed. What answers did parents and policy makers
need to have to design the most effective and efficient
interventions for very young children with ASD?

As scientists, we wanted to know what essential questions still needed to be addressed.  What answers did parents and policy makers need to have to design the most effective and efficient interventions for very young children with ASD?  Once we had those answers, we then designed a research project to address these questions. That project was funded by the Canadian Institutes for Health Research through its Institute of Human Development, Child and Youth Health.

This cross-Canada study aims to identify the factors that promote healthy development in children with Autism Spectrum Disorders.  More than 400 children from Nova Scotia, Quebec and Ontario are participating in the study.  The Government of British Columbia became very excited about this project and decided that they too wanted to participate, and so we now have children from British Columbia included in our project.  We hope in the near future to also engage the participation of the Governments of Ontario and Alberta in order to expand the study in Ontario and include children from Alberta. 

As it currently stands, this will be the largest study of its kind ever carried out anywhere in the world and will provide a wealth of new information.  In the end, we will be able to describe the developmental pathways of children with ASD and identify what services, what interventions, and what factors promote the healthiest development among these children.  Instead of focusing on the deficits of children with ASD, we hope to focus on the strengths that allow them to be resilient in the face of risk.

Confusion, inequities and the “evidence gap”

“Some provinces are funding services for which there is
absolutely no scientific evidence of their efficacy.”

All across Canada, parents are suing their provincial governments because they feel these governments are not providing the kinds of services that are needed to help and treat their children [1].  There is enormous variation and discrepancy from province to province in the kinds of services that are delivered.  Some provinces are funding services for which there is absolutely no scientific evidence of their efficacy.  Others are providing more evidence-based services in the best way they can despite limited resources but are not sure how to do that. 

The problem is that so much animosity and ill will has built up over the last few years that it is extremely difficult to engage all the stakeholders in constructive conversations in this environment.  Is there any other disorder of childhood that has gone to the Supreme Court of Canada?  This ill will and this variation from province to province is essentially the direct result of a lack of information, a lack of knowing what the best treatment for each child with Autism Spectrum Disorder might be.  This lack of knowledge leads to a dearth of well-qualified practitioners, long waiting lists, and non-evidence based treatments all across the country.

There is also enormous variation in the clinical characteristics of children with Autism Spectrum Disorder at age of diagnosis and right through to adulthood.  There are “mild” and “severe’ forms of ASD.  Sometimes the “milder” forms carry a greater burden of suffering because the expectations are greater and the public’s understanding less. 

“Mild” and “severe” should not be equated with treatment need.  The key is to match type of treatment with the characteristics of the child so that each child is able to benefit to the maximum of his or her potential [2].  But that is the essential evidence gap in the early intervention literature.

The burden of suffering of ASD

Autism is a unique medical disorder.  It has the highest burden of suffering of any childhood disorder.  It is a medical disorder because it originates in the brain and affects all aspects of the child’s development.  Hence, it influences their level of community involvement, the type of education that they require and the quality of social interactions they experience with family and friends.  In public health terms, “burden of suffering” is usually conceptualized in terms of prevalence, morbidity, mortality, outcome, and economic cost. 

Let me briefly summarize what we know about the burden of suffering of Autism Spectrum Disorders.  The prevalence is roughly .6% or one in 165 children [2, 3].   That makes it the most common form of any neurological disorder or severe developmental disability of childhood. 

Roughly 25% of children with ASD develop epilepsy. 
60% have another mental health problem.
50% [are] unable to speak as adults. 
50% are mentally retarded. 
All have some kind of cognitive or learning disability.

The key factor that contributes to the morbidity associated with autism is that there are so many other conditions that occur in conjunction with autism.  These co-morbidities make quality of life and adaptation so much more difficult.  For example, roughly 25% of children with ASD develop epilepsy [5], and roughly 60% develop another mental health problem such as attention deficit disorder, mood disorder or an anxiety disorder [6, 7].  Roughly 50% have severe communication impairments so that they are unable to speak as adults [8, 9].  All have some kind of cognitive or learning disability, ranging from the very severe forms of mental retardation in 50% of children with ASD to disabilities that are less apparent but no less difficult to cope with.  Some do grow out of the disorder (less than 10%), more often those who are higher functioning but even that is only a small minority [8, 9].  Mortality is increased largely because of the complications of epilepsy [10].  One study from the United States reports that 60% of children with ASD take psychotropic medication [11], and 30% take two or more medications simultaneously [12]. (It is worth pointing out that there is no scientific evidence that taking two medications is any better than taking one medication).

Autism is also unique from the point of view of the family.  The stress experienced by the families of children with Autism Spectrum Disorders is greater than for any other childhood condition or developmental disability [13].  In addition, the rates of accompanying mental health problems in children with autism are also greater than for any other developmental disability [14].  These problems last longer and cause more impairments in quality of life than any other problem of childhood [15]. 

The economic cost associated with autism is also far greater than for any other developmental disability or childhood condition [28, 29]. 

A study from the United Kingdom, for example, estimated that the lifetime cost of a child with autism is roughly 12 million pounds (more than $25 million Canadian dollars) in terms of providing living support and day-to-day activities [16]. 

Annual health costs of children with ASD are
reported to be roughly three times that of typical children
and 45% greater than for other childhood disabilities.

A study from the United States reported that the annual health costs of children with Autism Spectrum Disorders are roughly three times that of typical children because of increased numbers of hospitalizations and clinic visits [17].  That same study reported that annual costs are 45% greater than for other childhood disabilities. 

Another study [18] reported that children with Autism Spectrum Disorders had greater difficulty getting access to services than other special needs children [30]. 

Finally, one study reported that if one looks at “patient years”, (that is the number of children with this condition times the number of years that they live), the burden of ASD on Canadian society in terms of economic cost is roughly equal to that of Alzheimer’s disease [19]. 

All these figures are based on old prevalence data that have not taken account of the increased numbers of children receiving this diagnosis.  Do we as a country have the same level of support for ASD as we do for Alzheimer’s?

Closing the gap between what we know and what we do

I am a child psychiatrist, and I have been diagnosing and treating these children for more than twenty-five years.  When I started, there were few, if any, children with this diagnosis in our clinical setting. I said to my colleagues, “Send me all the children that you do not understand or that you have had difficulty diagnosing”.  They sent me those cases and it turned out that virtually all had an Autism Spectrum Disorder. This illustrates to me more than anything else, the lack of knowledge associated with autism. But it must be said that there has been an incredible increase in information over the last 25 years. 

For example, we do know what causes autism. It is caused by genetic factors [20].  It is an inherited disorder. The answers to what is inherited and how it is inherited are not known. But, along with my colleague, Dr. Steve Scherer at the Hospital for Sick Children, we at the Offord Centre for Child Studies are leading an international team of scientists dedicated to finding the genes that cause this disorder. This Autism Genome Project is being funded by Autism Speaks in the U.S., as well as Genome Canada and the Canadian Institutes of Health Research. I am convinced we will find those genes in the very near future, and we can all take pride, I believe, in the fact that the Canadian government played such a pivotal role in supporting this research.

It is true that early intervention makes a
difference but it is not true that all children
need exactly the same type of treatment.

We also do have some ideas about how to treat Autism Spectrum Disorders.  It is true that early intervention makes a difference but it is not true that all children need exactly the same type of treatment [2, 21].  Not all children need incredibly intensive intervention that takes between 20-40 hours a week.  Some children do respond, but some children do not respond to even that level of intensity and need another form of treatment.  Others do not require that level of intensity and can do just as well with less intensive forms of treatment that are carried out in more naturalistic settings [23].  We do not know the relative proportion of those types of children but there is now more and more scientific evidence showing us that different forms of intervention can be adapted to different types of Autism Spectrum Disorder.  More work needs to be done but we are much farther ahead today than we were even five years ago.

The problem is that nobody knows about this research. People appear to be so preoccupied with fighting with each other, and fighting with their governments, that this excellent scientific work remains in academic journals and so does not become widely known.

This is where I would like to emphasize the notion of “knowledge translation”, which means disseminating scientific evidence to change patterns of clinical care. I am convinced that there is a lot more information that is available that Canadians just do not know about. These scientifically rigorous, methodologically accurate, studies have been carried out but they are not publicized on the Internet. 

A recent study of information about autism
on the Internet found much of it was inaccurate,
biased or designed merely for commercial gain.

Most Canadian families get most of their information about autism from the World Wide Web. We recently conducted a study of the quality of information about autism on the Web. We were shocked at the amount of misinformation, how biased that information was, and how much of the information was merely an advertisement for a treatment or for a particular organization. There was no Internet source providing an unbiased summary of the latest scientific information updated on a regular basis to inform Canadians of the latest, most highly regarded scientific evidence about this perplexing disorder. It is not good enough to put evidence-based information up on the Web and leave it there. It must be continually updated to take account of new developments in the field.

CAIRN’s contribution to knowledge translation

As part of our mandate at CAIRN, we established an evidence-based web site where we searched the scientific literature on a weekly basis, identified the most clinically relevant and most scientifically rigorous studies, translated those studies into brief, plain language summaries, and placed them on our web site.

We summarized the latest evidence about autism, its causes, the most effective treatments, the best ways to accomplish early diagnosis, which medications were effective, which were not effective, and so on. We were astonished by the response to this web site.  Canadians, and indeed families from around the world, flocked to this web site for information about the latest evidence on this condition. In the last year alone we had 37,000 regular visitors to the site. 

Knowledge translation is seen as outside the mandate
of hospitals, universities and funding agencies,
and so Canadians are deprived of essential,
scientifically rigorous, information.

We are deeply grateful to The Lawson Foundation for helping to fund this web site but it is important to emphasize that there are no sources of funding for scientists like us to take on this kind of activity.  The universities will not pay for it, hospitals will not pay for it, granting agencies will not pay for it, and so we had to stop, which I think was a great pity.  Knowledge translation is seen as something that is outside the mandate of hospitals, universities and funding agencies, and so Canadians are deprived of essential, scientifically rigorous, information.

Why public access to the best science is critical

The consequence of Canadians not having access to the latest and the best scientific evidence is that they turn to other resources for help.  Those resources often do not have any scientific basis, do not do any good, and may even do harm. 

There are many examples of treatments that have been promoted on the Internet that have done much more harm than good.  To mention only a few, web sites that promote facilitated communication, Secretin, and the use of certain medications have all done tremendous harm.

Another important example of web sites that have done harm are sites that promote vaccinations as a cause of autism.  There is absolutely no scientific evidence that vaccinations cause autism [3].  However, this “theory” is being promoted as a cause on many web sites and in newsletters and, as a result, some families have resisted vaccinating their children.  This has led to measles outbreaks, and some children have died as a result of infection [24]. 

There is absolutely no scientific evidence that
mercury-containing vaccinations cause autism. Yet 
so-called “chelation therapy” continues to be promoted,
with the result that some children have died.

There is also a theory that mercury-containing vaccinations cause autism. Some individuals have promoted so-called “chelation therapy” that is said to remove mercury from the bloodstream [25]. Children have died as a result of this intervention [25]. Again, there is absolutely no scientific evidence that mercury-containing vaccinations cause autism. However, we cannot get that information out to the general public, to all Canadians, to protect them from such opportunistic initiatives that cause so much harm.

Key elements of a national autism strategy

Let me conclude now on behalf of CAIRN by outlining what I see to be the Federal Government’s role in developing a National Autism Strategy.

1. National standards based on the very best science

There are certain baseline standards demanded
by scientific evidence that should be a
starting point for each jurisdiction.

The first is to bring together the various service providers, government agencies, policy makers, scientists and parents from across Canada and continue what we started at CAIRN to discuss and document service discrepancies across the country.  It would be very worthwhile to document the variation in service delivery modules across this country, to identify those interventions that are congruent with current scientific evidence and those that are not.  Yes, each province is unique, but there are certain baseline standards demanded by scientific evidence that should be a starting point for each jurisdiction.

2. A commitment to research

The second role is to advocate for the creation of new knowledge.  Canada has an outstanding team of scientists from Newfoundland to British Columbia who have devoted themselves to the study of autism.  Many of these scientists are world leaders.  They are bursting with creative ideas about what causes autism, how to treat it, and how to influence the long-term outcomes for children with ASD. 

There is also a whole new generation of graduate students and physicians who want to become involved in this exciting field.  Give them a chance to work together and to test their ideas for the benefit of the children and families across Canada who are afflicted with this disorder. 

Since 2000, Canada has spent $16 million to
fund research on ASD.  The United States
will spend $200 million in one year.

The amount of research funding available to these scientists through Canada’s three federal granting agencies is nowhere near the relative proportion of what is available in the United States or in the United Kingdom [26, 27].  Since 2000, Canada has spent $16 million to fund research on Autism Spectrum Disorders.  The United States intends to spend $200 million in one year to set up centres of excellence.  We are far behind these other countries in the resources we are committing to test out the exciting ideas Canadian scientists have.  We must invest in research training programs to ensure that we keep pace with scientific developments in the years to come. 

3. Ensuring Canadians’ access to new knowledge

Third, the Federal Government might provide an infrastructure for the dissemination of the knowledge that we already have, the new knowledge that is regularly being published in academic journals. 

Let us get that knowledge out of the scientific journals.  Let us translate the best scientific evidence into plain language so that Canadians in St. Anthony’s, Newfoundland, and all the way to Yellowknife can be up to date about what causes this disorder, which medications are useful, which are not useful, which treatments are helpful, and which treatments are not helpful.  This information needs to be updated on at least a monthly basis so that it remains current and clinically relevant.  Canadians need to be able to turn to a trusted resource instead of being taken advantage of at their most vulnerable moments by opportunistic entrepreneurs who use the Internet for commercial gain.

4. Using knowledge to improve efficiency

Sharing knowledge with all Canadians is the only way
we can come to some kind of agreement about
the most efficient use of our resources.

At the same time as we invest new funds in intervention, let us deploy the existing funds we already have in a more efficient way.  The only way to do that is to share the knowledge we already have with all Canadians so that we can come to some kind of agreement about the most efficient use of our resources.

Towards a better future

Creating and disseminating new knowledge is not all that expensive. It is all a matter of investing now to save in the future, and I do not only mean saving money. I mean saving suffering, unhappiness and despair. 

In over 25 years of working with these families and with these children, I have seen moments of despair that are hard to imagine. I have also seen these youth graduate from school, go out on a date, get their first job, bring so much joy and happiness to themselves, to their families, and even to me. And it’s all a function of sharing knowledge. It’s all a function of trusting what science can do for us, and applying that science to the everyday lives of these children.

It’s all a function of trusting what science can do for us,
and applying that science to the everyday lives of these children.

Thank you very much for this great opportunity. We will continue to advocate for these children and to advocate for the role that knowledge can play in improving the quality of life of these children, in levelling the playing field, and in reducing the burden of suffering associated with Autism Spectrum Disorders.