BY KRISTIN MILANI
Amanda Bell first became a member of the Waterloo Region chapter of Autism Ontario in 2010 and it wasn’t very active. In September 2012, She became president of the chapter. She also sits on the Waterloo Region District School Board’s Special Education Advisory Committee as the autism representative.
Bell also currently sits on the planning committee for Autism Speaks, promoting both the Light it Up Blue campaign for World Autism Day and Waterloo Region’s Walk Now for Autism Speaks walkathon.
Her hard work was recognized in March 2012 by local radio station CHYM FM. She was given their Good Samaritan award for her advocacy for autism in the community.
After becoming president, Bell decided that it was time for change. Parent support group meetings had poor turnouts and activities for children and their parents to attend were lacking.
Bell and the leadership council wanted to take a different approach. They wanted to plan more fun activities for children with autism to enjoy. Prior to Bell’s contribution to the organization, there were occasional movie nights. Now, there are monthly movie nights, skating, parent workshops and bowling.
The activities are designed for the children to feel comfortable while enjoying regular activities. It’s an opportunity for them to feel safe, relaxed and content all at the same time.
“Families really look forward to it,” Bell said.
Bell is also a registered full-time nurse in Grand River Hospital’s obstetrical department. She is also a mother of three children, ages three, five and seven, all who have autism spectrum disorder.
Autism spectrum disorder is a neurobiological condition that impacts normal brain development. Many individuals diagnosed develop communication problems, repeat specific patterns of behaviour and have difficulty with social interactions. The treatment for individuals with ASD must be specific to their needs as people on the autism spectrum have varying degrees of symptoms.
Unfortunately for Bell and many other parents, the treatment for children with autism is hard to obtain. One in 88 people are now diagnosed with autism, finding and making treatment even more difficult. Bell and her husband, Cameron, have good jobs but no benefits, which makes paying for treatment difficult.
“The services are out there and my children can’t access them,” Bell said.
The cost of intensive behavioural intervention (IBI) therapy is between $40,000 and $60,000.
“It’s robbery. No middle-class family can absorb the costs without financial strain,” she said.
The therapy entails one-on-one work with professionals who use methods derived from principles of applied behaviour analysis (ABA). Research has found that IBI is the most beneficial treatment for children with autism, helping them develop skills they need for greater independence. In order to get coverage for the treatment, children must have certain criteria. Some unfortunately will never have the opportunity to experience the therapy due to the strict requirements.
“There is this wide spectrum of children and they only take a certain percentage of them and they all have the same diagnosis. It’s pretty cruel. It’s like telling people who have cancer, ‘you all have cancer but we’re only going to treat the people who have breast cancer.’”
Bell would like to see OHIP pay for more of the cost and see private insurance companies pay the remainder.
For children outside of the criteria, the government offers a limited amount of ABA. The issue is that the children can only go for two hours once a week for nine weeks and then are placed at the bottom of the wait list for six to eight months. Bell thinks that the program is wonderful but the limited service creates inconsistency in the children’s progress.
Not only is treatment difficult to obtain, there is a very limited amount of one-on-one special education at schools. Some of them are unable to receive IBI resulting in school being a constant struggle.
Although there is no cure for autism, the condition can improve with age, something that offers families a little bit of hope.