Your three-year old boy has just been diagnosed with autism, a neurobiological disorder that affects a person’s communication skills and social abilities. Despite all sorts of research on treatments, no one can tell you exactly how to support him so that he will learn and develop.
Part of the reason is that no two individuals with autism spectrum disorders are the same. One can be profoundly developmentally delayed and have no language, while others are only mildly affected with average or above average intelligence and functional language.
With one in 110 children affected by autism, it is important to figure out how to help each child cope with the specific challenges he or she faces.
Pat Mirenda, a professor in the Department of Educational and Counselling Psychology, and Special Education at UBC’s Faculty of Education, is part of a Canada-wide research team doing just that, funded by the Canadian Institutes of Health Research and the B.C. government. Her team is surveying 400 children from the time they are diagnosed until they reach Grade 5.
“We want to know what type of treatments work the best,” says Mirenda. “And in order to do that, we need information about the children, their families and their school experiences.”
Once complete, this research should provide a clearer picture of how best to intervene when a child displays certain symptoms. Unfortunately, Mirenda has identified another problem. There is no easy way to get this information to the families who need it.
“The kids and the families are suffering because coordination between all of the researchers and clinicians working on autism is not available,” says Mirenda, who decided to address this problem by establishing the Centre for Interdisciplinary Research and Collaboration in Autism (CIRCA) at UBC.
“We need to develop more coordinated systems and this centre gives us the opportunity to bring people together and create synergies.”
In April, during Autism Awareness month, CIRCA co-sponsored a three-day conference with ACT-Autism Community Training, and for the first time brought together all of the researchers working on autism in B.C.
“Many of the people at the conference weren’t familiar with the research being conducted in the province,” said Mirenda. “How are we supposed to solve this problem if everyone is in their own silo?”
Apart from creating a network for addressing autism issues, CIRCA is also working to educate more professionals who can work directly with families. UBC has the only Master’s program in Special Education with emphasis on autism in the province. Each year about 15 students in this program also complete the coursework to become Board Certified Behaviour Analysts.
Recently, CIRCA received $1 million from the B.C. Ministry of Children and Family Development to hire two new faculty members with a focus on autism. One will be taking the autism Masters program to Vancouver Island in the fall.
Nineteen students have registered for the Vancouver Island program. Within the next few years, Mirenda hopes to have another program starting in the Okanagan or northern B.C.
Applied Behaviour Analysts work with individuals and families living with autism to teach them language, play, social, self-help, motor, and other skills. Most children learn by imitating their parents, siblings and friends. Children with autism are less likely to do that. They don’t absorb information and then apply it to their own actions, so they need specific instruction in order to learn.
Having more professionals with knowledge on how to work with children with autism, and provincial capacity-building are among the goals of CIRCA.
“One day, I hope every community centre in the province will have someone who knows how to make programs and activities available to people with autism,” Mirenda said.
She’d also like to see more collaborative projects, where researchers across all fields work together to understand the complexities of autism spectrum disorders.
“There are lots of pieces to the ‘puzzle’ of autism, and the main goal of research is to understand all of the pieces and how they fit together, in order to improve the lives of people with autism and their families.”
For more information about CIRCA, please visit: http://circa.educ.ubc.ca