Moving Mountains

Eight-year-old Liam Sinclair (not his real name) loves to shoot hoops outside his North Vancouver, BC, home–that’s when he’s not attending school, enjoying soccer practice, or taking music lessons.

He’s come a long way in the last six years.

At the age of two, Liam was diagnosed with autism. Reeling from the news, his parents Susan and Robert Sinclair (not their real names) were dismayed to discover there was no government agency to coordinate treatment for their son. While provincial social services helped them obtain some funding and offered respite care, the couple was left on their own to find therapy for Liam. They finally settled on a treatment that worked for Liam, applied behaviour analysis (ABA).

Family Therapy

ABA is an intensive approach–up to 40 hours a week–that breaks down a desired behaviour into small steps, rewarding the child for each successful behaviour. Susan Sinclair explained that even if her family could afford the full 40 hours a week, qualified ABA therapists are difficult to find and retain. So the family pressed on with what Sinclair describes as modified ABA.

Parents of autistic children say managing family life is like running a business. They spend long hours teaching their child, preparing learning materials, hiring and firing, training workers, and attending consultations. Once their child enters the school system, parents find they must be unrelenting advocates to ensure their child receives adequate services.

For Sinclair it’s been a long haul, and she admits she is tired of fighting. “It’s not a fate I’d wish on anybody,” she says.

Going Political

Jean Lewis, mother of a 14-year-old autistic boy and spokesperson for the BC chapter of Families for Early Autism Treatment (FEAT), is calling on the Canadian government to cover the cost of treatment under medicare. In April she took her Medicare for Autism Now! campaign to Parliament Hill.

“When a child is diagnosed with diabetes, we don’t withhold treatment just because it isn’t a cure,” says Lewis.

Lewis says there is sound scientific evidence that ABA is the most effective treatment for autism. A UCLA study of 19 very young children with autism reported that after two or more years of intensive early behavioural therapy 47 percent of children were “indistinguishable from their normally developing peers” and another 42 percent had made significant improvements.

Behavioural therapy is expensive. At close to $60,000 a year, it’s a heavy burden for government to shoulder. It’s even more of a burden for individual families.

“We’re moving mountains for our kids,” says Lewis.

Maintaining Perspective

Anna Silveira, mother of two autistic boys, is philosophical. Her advice to parents who suspect their child has autism is not to panic. She says parents who hear that early intervention is important become sick with worry if diagnosis and treatment are delayed. In her experience, says Silveira, the important thing is to be consistent with treatment once it’s started. She says parents can find support and information through nonprofit groups such as the Autism Society of Canada and FEAT.

Silveira stresses that every child is different, and treatment that works for one child may not work for another. She has learned to cope using some simple strategies–keeping track of small victories, maintaining a sense of humour, and getting active in the autism community.

Liam continues to make huge leaps. While three years ago he wasn’t speaking, today Liam speaks normally, sleeps through the night, has friends, and sets the table for dinner. Sinclair is starting to get her life back and is making an effort to look after her own health. She can’t predict Liam’s future, but she has the same hope for him that all parents have for their children–that he will grow up with the ability to work and have a happy, fulfilling life.

Autism:What is it?

In Canada roughly one in every 150 children will be diagnosed with autism, and three to four times more commonly in boys than in girls. Symptoms such as repetitive behaviours and difficulty with social interaction usually surface before the age of three. Affected children can be anywhere on the spectrum from severely impaired to mildly challenged.

In 1980 autism was classified as a mental disorder in the Diagnostic and Statistical Manual of Disorders, a guide used by medical professionals. Recent studies, however, suggest autism is a neurological problem that causes developmental disabilities.

Earlier this year researchers from John Hopkins University isolated a gene they believe may make a child more likely to develop autism. The scientists cautioned that autism is not caused by genetic factors alone. They believe that environmental factors during fetal development may also play a role. They note that symptoms of autism are similar to those shown by children who had prenatal infections or who were exposed in the womb to chemicals such as alcohol or terbutaline, a drug used to treat asthma.

Dr. Derrick MacFabe, autism researcher with the University of Ontario, has been studying the link between the digestive system and autism. He has concluded that the disorder affects not only the brain, but also other organs in the body. He is optimistic that scientists from all disciplines can work together to shed light on the causes of autism and, ultimately, to find solutions.