A research study that may provide hope of finding an effective, alternative intervention for children with autism who do not respond to Intensive Behavioural Intervention (IBI), is being conducted under the leadership of McMaster University.
The study is designed to determine if participation in a functional behavioural skills program provided by therapists in one-on-one and group settings, and additional training for parents, will help those children who are not responding well to IBI.
While IBI is an effective treatment for many children with autism – a severe neurological disorder - it is extremely expensive and there are long waiting lists for the provincially funded programs. IBI for children at the severe end of the autism spectrum has been funded across Ontario since 2000. Recent research has shown that while many children improve, a substantial proportion of children in treatment do not make any significant gains in cognitive ability or behaviour, despite 20 to 40 hours weekly of therapy, at a cost of about $60,000 a year.
It is estimated that one in about 165 children in Canada is afflicted with some degree of autism spectrum disorder, which results in extreme difficulties in communicating, socializing and behaving, as well as severe developmental delays in some.
Jo-Ann Reitzel, Clinical Director of the Hamilton-Niagara Regional Autism Intervention Program at McMaster Children’s Hospital, and an assistant professor in the Department of Psychiatry and Behavioural Neurosciences at McMaster University, has received $150,000 from the Ontario Mental Health Foundation (OMHF) to conduct a two-year study of how young children with severe autism fare when provided with a psychosocial intervention based on the principles of Applied Behaviour Analysis (ABA). ABA involves a variety of methods for assessing children's behaviours and learning needs, and intervening with techniques to teach skills and behaviours.
Reitzel said the study is important as professionals have an obligation to find other methods for helping children with autism develop better communication, social and behavioural skills, and alleviate some of the extreme strain experienced by parents and other caregivers.
“Some children simply don’t respond to IBI, and we need to find alternative treatment for those children,” she said. “Right now there is no clear indication in the (research) literature about ‘what next"’ What do we recommend for those children who aren’t helped by IBI"”
Her grant application was ranked first by the OMHF of 73 requests for funding of various projects. The research team includes Drs. Jane Summers and Peter Szatmari of McMaster University, and Dr. Lonnie Zwaigenbaum, formerly with McMaster.
The study will start this summer and last for two years, involving children in the Hamilton and Niagara areas who have been identified as candidates for IBI. For an eight-month period while the children are receiving IBI, some children who are not progressing will also receive functional behavioural skills training. Reitzel said the functional skills training will focus more specifically on helping the children practise basic day-to-day living skills such as eating, dressing, communicating and toileting.
IBI is a cognitive-based program, where intensive programming focuses on improving children's developmental outcomes by teaching thinking and language skills such as to understand instructions, to express themselves, to learn adaptive behaviour, social and play skills and to change their behaviours.
If the functional skills training based on ABA proves beneficial for some of the children with complex autism who don’t respond to IBI, not only will it be a treatment option in the best interests of the children, but it could mean more spots will become available in the IBI program for those more likely to benefit.
There are about 100 children in the Hamilton-Niagara area receiving IBI, and about 100 on the waiting list for the treatment.
IBI has been in the news extensively in recent months, as parents fight for greater government support of the treatment. They fought to have the treatment funded for children beyond the age of six, and most recently have been lobbying the government to allow the provision of IBI in the school setting.
While IBI is no longer automatically discontinued when a child turns six, the downside has been a substantial increase in waiting lists. Since 2004, the wait list for the therapy has burgeoned in Ontario to 1,200.