Autism, or more appropriately autism spectrum disorders (ASDs), affects an estimated 6 of every 1000 Canadian children. ASDs vary significantly in the severity of their symptoms. Children with milder forms (for example, Asperger syndrome), despite relatively intact cognitive skills, have impaired communication and social skills (e.g. poor eye contact, difficulty forming reciprocal relationships) and abnormal repetitive behaviours. Other children with autism are even more severely handicapped, lacking any form of effective communication, plagued by extreme aggressive and/or self-injurious behaviours, and sometimes affected with seizures. Regardless of the severity of ASD, parents with a child with ASD can face significant emotional and financial challenges. Clearly, we need to improve the outcomes for children with ASD. For this reason, this week's announcement by the Government of Canada of further action on ASD is welcomed.
The Canadian Institutes of Health Research (CIHR), through our Institutes of Human Development and Child and Youth Health and Neurosciences, Mental Health and Addiction, has worked with the research community, provincial research agencies, and community organizations to support a national strategy of research and knowledge translation on ASD. The overall goal of this strategy is to harness science to solve the riddle of autism. This strategy is based on the premise that Canadian scientists, working together, with autistic children and their families, with caregivers, with the school system and with governments, is essential if we are ever to understand the fundamental causes and biological basis of autism, reliable methods of early detection, and sound approaches to effective treatments. The challenge of autism demands that Canadian researchers, work with each other and with colleagues in other countries, to develop powerful new evidence-based approaches to ASD.
For example, CIHR has funded a team of ten Canadian researchers based at McMaster, McGill, Dalhousie, UBC and Toronto, to follow over 400 Canadian children with ASD over 5 years. This team, which grew out of a CIHR opportunities grant to establish national priorities in autism research (the Canadian Autism Intervention research network; CAIRN), will focus on the critical transition between initial diagnosis of ASD (usually at 2-4 years) and entry into school. The influences of family, child and health services and community factors will be examined, as will whether the child has a positive or challenging outcome during this transition. The results of this research will be used to guide the development of new programs and interventions that increase the likelihood of a positive transition to school.
There is a growing body of evidence, including a very significant Canadian contribution, suggesting that early interventions improve outcomes for children with ASD. As such, it is essential that children with ASD are identified and diagnosed as early as possible.
Dr. Lonnie Zwaigenbaum, a developmental pediatrician who recently moved from McMaster University to the University of Alberta, and Dr. Susan Bryson who holds the Joan and Jack Craig Chair in Autism research at Dalhousie University, are doing pioneering research on the development of the Autism Observation Scale for infants (AOSI). The AOSI was developed as part of a ground-breaking program of research aimed at discovering the earliest signs of autism, by intensively following a group of high-risk infants. This research program has created new opportunities to evaluate interventions targeting the core deficits of autism in children as young as 12 months.
Developing more effective and earlier diagnosis and treatments are essential. For this to succeed, we need to understand the causes and biological basis of ASD. For these reasons, Canada is participating in a worldwide effort to understand the role of genetics as an underlying contributing factor for ASD. Led by Dr. Peter Szatmari at McMaster University, the Canadian team is part of an international consortium of over 170 of the world's leading genetics researchers who are studying 1,000 families, including 200 Canadian families, to locate and isolate the gene(s) associated with ASD. This project holds great promise for opening the doors to understanding this perplexing disorder. This understanding will, in turn, lead to new ways of early diagnosis and new treatments.
Complementing these genetic experiments, Dr. Edward Ruthazer at the Montreal Neurological Institute and McGill is trying to understand the abnormalities that occur during the development of the neural circuitry in the brains of infants with ASD.
Two national autism research training programs have been created to develop the next generation of autism researchers. The Autism Research Training Program, led by Dr. Eric Fombonne at McGill, is organized around 22 mentors from 7 universities in Canada who have brought together trainees in a multidisciplinary environment to focus on the genetics, brain imaging, epidemiology, neurology, and psychology of autism. The Transdisciplinary Inter-institute Training Program in ASD, led by Dr. Jeannett Holden at Queen's University, consists of 43 individuals from 17 sites across Canada and the USA to also develop a problem-based approach to autism.
While this long term research and commitment to developing future autism researchers is critical, children with ASD and their families need help now. That's why Dr. Susan Bryson at Dalhousie is designing and implementing the autism treatment program in Nova Scotia, rooted in evidence-based strategies that families can use at home. She and her team are also providing much-needed information to family physicians to help them identify the early signs of autism so that interventions can begin early.
Research alone will not solve the challenge of autism and that is why the future advice of the Senate Standing Committee on Social Affairs, Science and Technology on autism will be so important. A comprehensive national research agenda can help to support a coalition of all those who have a stake - children and their families, caregivers, the school system, governments and policy makers. Together, we have a responsibility and
the opportunity to ensure that all of those affected by ASD today benefit from the best existing research and that children born in the future with ASD reap the benefits of the research that is ongoing today.
Dr. Alan Bernstein, O.C., FRSC
President
Canadian Institutes of Health Research
