The program, Health Care Access Research in Developmental Disabilities (H-CARDD), aims to enhance the overall health and wellbeing of individuals with developmental disabilities through improved health-care policy and services.

H-CARDD is directed by Yona Lunsky from the Centre for Addiction and Mental Health, the Institute for Clinical Evaluative Sciences and the University of Toronto. Weiss, the Chair in Autism Spectrum Disorders Treatment and Care Research in 91亚色鈥檚 Faculty of Health, is a member of the program鈥檚 core team, which includes scientists, clinicians and policymakers from across Ontario.

Jonathan Weiss

Individuals with developmental disabilities are one of the most vulnerable and marginalized populations when it comes to accessing healthcare. The goal of H-CARDD is to reduce disparities in health outcomes of Ontarians with developmental disabilities.

Four vulnerable subgroups will be examined over the next three years. The four subgroups are as follows:

• Aging Adults with co-leads Lynn Martin of Lakehead University and H茅l猫ne Ouellette-Kuntz of Queen's University
• Women with co-leads Virginie Cobigo of the University of Ottawa and Simone Vigod of Women鈥檚 College Hospital.
• Youth Transitioning to Adult Services with Weiss and Barry Isaacs of Surrey Place Centre
• Individuals with 鈥淒ual Diagnosis鈥� with Rob Balogh of the University of Ontario Institute of Technology and Elizabeth Lin of the Centre for Addiction and Mental Health.

Researchers already know that youth with developmental disabilities visit emergency rooms more often than others and have higher rates of psychiatric hospitalization than youth without disabilities. What is needed is more research at the individual and system level on the factors that lead to these high rates and that is what Weiss and Isaacs will be doing.

Young people with developmental disabilities have difficulty in transitioning into adult health care services. For those who need mental health services, it is even more difficult especially with an already difficult to navigate health-care system. That can lead to a worsening of issues.

鈥淯nderstanding patterns of service use as adolescents with developmental disabilities transition into adulthood can help us to identify barriers and gaps in the health service system,鈥� says Weiss. 鈥淒oing so can lead to improved primary care and addressing problems before they become severe.鈥�

H-CARDD鈥檚 program of research will provide new information that profiles vulnerable developmental disability subgroups and will translate research into action by facilitating the uptake of evidence-based practices in primary and emergency care.

H-CARDD鈥檚 partners include the Ontario Ministry of Community and Social Services, the Ontario Ministry of Health and Long-Term Care, the Centre for Addiction and Mental Health, the Institute for Clinical Evaluative Sciences, Surrey Place Centre, the University of Toronto, the University of Ottawa, Queen鈥檚 University, 91亚色, Lakehead University, Sunnybrook Hospital, and Women鈥檚 College Hospital.

For more information about the H-CARDD program, contact Julie Klein-Geltink, H-CARDD manager, at julie.kleingeltink@camh.ca.

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鈥淭he take home message is that autism research here at 91亚色 isn鈥檛 just one thing,鈥� psychology Professor Jonathan Weiss, chair of the 91亚色 Autism Research Alliance (YARA)聽in the Faculty of Health, told the audience. 鈥淲e want you to have a picture as you walk away from today聽of the breadth聽at which different faculty members with different areas of expertise are doing research.鈥�

Left: Dorota Crawford (standing, left) and Jonathan Weiss answering questions from the audience

YARA聽is an interdisciplinary team of researchers at 91亚色 that has been in existence for about two years. This was the first time it has reached out to聽a large range of聽community service providers as a group. The event was sponsored by .

鈥淭he goal was to provide an overview of the incredible range of autism research at 91亚色 and reach out to service providers and start a conversation with them,鈥� said Weiss. 鈥淚t鈥檚 really about knowledge exchange. This was the first step in that exchange, and they can let us know what they are interested in. Rather than a one way street, it breaks down the academic silos.鈥�

Weiss has just finished two pilot projects using聽cognitive behavioural therapy (CBT) with people with ASD 鈥� one used聽CBT to help reduce anxiety and the other used it聽to help build anger management skills. Weiss wants to know if the interventions that already exist can be adapted to help children with ASD, who also suffer from things like anxiety and aggression.

Right: Kari Hoffman explains her research at the inaugural showcase of the 91亚色 Autism Research Alliance

But that鈥檚 not all; he is also interested in knowing whether the level of health care and access to service for families with a teenager or adult with ASD is lacking in various parts of the province, what health care services they need and their experience of the system, and has embarked on a study to find out.

Dorota Crawford, a professor in 91亚色鈥檚 School of Kinesiology & Health Science, told the gathering she is researching whether genes or the environment are responsible for ASD. One of the things she is doing is trying to identify the genes responsible for specific symptoms of ASD and determine how they affect brain function. She has so far recruited 20 families with a child with ASD to give genetic material samples through a mouth swab to be able to compare genes. She is hoping her research will lead to an earlier diagnosis (before the age of two), earlier intervention and development of specific pharmaceuticals.

鈥淭he incidence of autism in the last three decades has increased dramatically,鈥� she said. In 1977, only one in 2,500 people were diagnosed with ASD, while in 2009 one in 106 people were diagnosed. Of those being diagnosed, males are four times as likely as females to have ASD.

Left: From left, Jonathan Weiss, Adrienne Perry, James Bebko, Dorota Crawford, Jennifer Steeves, Maz Fallah, Louise Hartley, director of the 91亚色 Psychology Clinic, and Tania Xerri, director of the Health Leadership & Learning Network

Psychology Professor Kari Hoffman told the audience about her work with social and emotional processing, the destination points for processing and the routes taken, which may be different in people with ASD than in a typical person.

School of Kinesiology & Health Science Professor Maz Fallah is interested in what things people with ASD pay attention to that may differ from others, what is the reason for that and what interventions could help. People who have an ASD have a persistent preoccupation with parts. 鈥淭hey cannot see the forest for the trees,鈥� says Fallah, and that might have to do with an object-based attention deficit, for instance.

As psychology Professor Jennifer Steeves says, 鈥淭here鈥檚 a lot we take for granted when we look around the room, but there鈥檚 a lot of computations that are taking place in the brain.鈥�

This plays into what psychology Professor James Bebko is researching. Children with ASD don鈥檛 seem to be able to combine visual and auditory cues into a single unit, which is needed to assess emotion when watching and listening to someone talking. Their sensory systems seem largely intact, he said, so it may be that the problem lies in the processing or the transitional skills needed before the processing occurs.

What psychology Professor Adrienne Perry is looking into is the effectiveness of Intensive Behavioural Intervention (IBI), the program of choice for treating children with ASD. But Perry says the results in the field are variable compared to those in a controlled situation and she wants to know why. She is looking at the predictors of how well IBI works, such as age, IQ and severity of autism, as well as parent involvement.

鈥淚t鈥檚 great to see that research is going to look at family stress and at the IBI. We really struggle in the community to know what to do,鈥� said Penny Diamantopoulos, a case manager with the child and family team of the (Central CCAC).

Dawn Ullman, also a case manager at Central CCAC, says she hopes the alliance does some follow up with the community in the next year or so. She would like to know what the results are of some of the research the professors highlighted. 鈥淚 really want to know the bottom line鈥� as the person working with the families.

For more information, visit the 91亚色 Autism Research Alliance website.

Republished courtesy of YFile鈥� 91亚色鈥檚 daily e-bulletin.

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