Despite its rising profile, there are still a lot of unknowns when it comes to autism. SFU’s Autism and Developmental Disorders Lab strives to fill these knowledge gaps
Most individuals with developmental disabilities face significant challenges to social inclusion, not only because of the unique challenges they have to bear but also because of common misconceptions, such as that everyone with autism is asocial). The mission of SFU’s Autism and Developmental Disorders Lab (ADDL) is to produce research that informs interventions to help these individuals achieve social competency and to inform the public at large about autism.
Since 2000, the lab has been adding to our understanding of Down Syndrome, Fetal Alcohol Spectrum Disorders and other developmental disabilities, particularly Autism Spectrum Disorder (ASD). Grace Iarocci is ADDL’s director as well as an SFU psychology professor and a Michael Smith Foundation for Health Research Scholar. The lab’s work is funded by the Canadian Tri-Councils (SSHRC, CIHR, & NSERC), the Michael Smith Foundation for Health Research, the Human Early Partnership, and the Laurel Foundation.
“I’ve always been curious about how children develop and how resilient they are, even in some cases, in the face of significant life adversity,” says Iarocci. Her research approach is founded on the idea that atypical and typical development can be better understood when studied together, and most of her studies use participants with and without ASD. “There are more commonalities than differences, and the differences can help us understand not only how ASD uniquely affects development but also the limits and potential variations on typical development.”
In 2013, Iarocci's team developed the Multidimensional Social Competence Scale (MSCS), a clinical measurement tool to aid in the study of social competence. The MSCS enables caregivers and researchers to identify subgroups within the autism spectrum to create tailored interventions based on a child’s level of social competence along seven distinct domains, from social motivation to emotion regulation. Says Iarocci, “The MSCS is the only standardized scale that can provide a multidimensional profile of strengths and challenges in social competence for children and adults with ASD, as well as for the typical population.” It is being used by clinicians and researchers in Canada, the US, Australia, the UK and China.
For the past five summers, the ADDL has run a free day camp for children with or without ASD, 7 to 12 years of age. The children engage in fun crafts and interactive game activities and also have the option of participating in research studies that involve playing computer games, word games, and puzzles.
“A few families participate in the camp every year,” says Iarocci, “One dad from Kamloops approached the ADDL to initiate a parent networking group during the camp one year, and the following year ADDL expanded the camp to include a space for parents to network and participate in workshops and discussion groups co-led by parents and invited speakers.”
But because the impacts of ASD persist past childhood, the lab has started to investigate and devise interventions for issues faced by adolescents and adults with ASD. For instance, SFU’s Centre for Students with Disabilities launched a mentorship initiative last year to assist students with ASD who were making the high school-to-university leap. The idea was a team effort between the Centre, Iarocci and Elina Birmingham, director of the Social Attention Research Group at SFU. Peer mentors receive formal training and on-going supervision from faculty to provide companionship and coaching for their mentees. The program has been off to a great start with positive feedback from the mentees.
There are currently students, staff and volunteers with ASD who are part of the ADDL team, but Iarocci wants to do more to engage those affected in getting involved in research and initiatives that concern them. Says Iarocci, “I believe this is not only an important step toward the empowerment and social inclusion of people with disabilities, but also a necessity for the evolution of the scientific effort."
Dr. Grace Iarocci is director of the Autism and Developmental Disorders Lab. She is also a faculty mentor of the Autism Research Training Program (ART) at SFU. Funded by the Canadian Institutes for Health Research (CIHR), the ART program is designed to recruit and train outstanding autism researchers from disciplines such as psychology, genetics, imaging, epidemiology, and neurology. Iarocci works closely with government and community agencies in British Columbia to disseminate research information and influence policy on ASD and other developmental disabilities. Her research interests include developmental psychopathology; the development of attention and perception in individuals with pervasive developmental disorders, intellectual disability, risk and protective factors in the development of Aboriginal children.
Q & A with Grace Iarocci
If you could sum up the value of university research in one word, what would it be?
Research is innovation, changing the way we think and do things so that we move ever so slightly forward in improving the human condition. I believe if we improve the human condition there are no limits to what we can accomplish.
What motivates you as a researcher?
I’m motivated by curiosity and collaboration. I believe the answers to complex questions, particularly those that involve the human condition, require collaborative and social discourse. My light-bulb moments happen during discourse (with students, colleagues and the public) and not in quiet contemplation.
How important is collaboration in advancing research?
Complex conditions such as ASD require expertise from a variety of disciplines. No one researcher has all the knowledge and skills necessary to tackle the critical questions.
SFU bills itself as “Canada’s most engaged research university.” How does your own work exemplify this spirit of engagement?
We are deeply committed to engaging the public, professionals and non-profit organizations in the discourse on disability awareness, research gaps, and evidence-based practice. We regularly work with community and government agencies to build capacity for research in BC and to inform policy decisions that matter to people’s day-to-day lives. Our research in the lab is only one part of our commitment to improve the lives of children. We know that the social inclusion of individuals with disabilities is not a natural process but requires commitments and concerted efforts from researchers, families, communities and society.
What do you see as the most noteworthy emerging trend that will shape the direction of university research over the next 50 years?
How we specifically and effectively target research collaborations to find new ways to address population health issues. We are becoming more concerned with the quick and effective dissemination of interventions that have already shown promise in the lab. The more pertinent questions will be how do those techniques fare when delivered in a real world context. The priority will be to use technologies and interventions effectively, efficiently and cost-effectively to have a direct impact on targeted populations.