Imagine worrying there is something wrong with your child — a child that for months since birth has appeared perfectly normal.
Then, without warning, your child has stopped progressing, withdraws from the world, exhibits behavioural problems.
After months of waiting for a diagnosis, you receive the news. Your child is autistic.
Then imagine the most heart-wrenching, unfair news of all.
There is a treatment which has proven to help autistic children, especially for those diagnosed early on, but you now find yourself on a waiting list, years long.
The most common treatment is Applied Behavioural Analysis (ABA) or Intensive Behavioural Intervention (IBI) — essentially the breaking down of routines into smaller, manageable portions, with repetition, prompting and reinforcement. But this treatment isn’t immediately available through government funding.
Many families face financial ruin trying to do the best for their child, cashing in their RRSPs or mortgaging their homes to fund private treatment as they wait for government treatment.
Others turn to the Internet — swayed by the promises of close to miraculous treatments.
Chantise Araujo’s youngest son Clark was diagnosed with autism in November of 2006, when he was two.
"We were told that we did a great job catching it when he was so young as early intervention is the key, and then were told that we would have to wait months and even years for some services."
Clark has since started to receive occupational therapy but rather than wait for a government-funded spot, they dipped into their RRSPs to pay for private ABA therapy, initially three days a week, three hours each day. Araujo has gone back to work so Clark can attend five times a week. Her entire paycheque goes to the weekly $600 cost.
The kicker is that ABA has made such a difference that the family has been told Clark might not be autistic enough for government-funded treatment. Frustrating? You bet.
"He’s not autistic enough, it’s so utterly ridiculous. It’s kids like him who can benefit the most. He has a chance of leading a relatively normal life, it actually makes more sense to invest in him," said Araujo.
All provinces and territories, with the exception of Nunavut, provide some funding for autism therapy, most notably for ABA/IBI. Parents can spend as much as $40,000 to $60,000 for a full-time ABA program. But there is no national program to ensure uniform and equitable access to therapy.
A Senate committee report on autism says all available treatment approaches should be monitored for effectiveness and treatment regimes should be provided based on scientific evidence — not false hopes and dreams.
Harmful therapies should be discredited or even prohibited, the report continues.
When Jennifer Kozij’s son William was diagnosed as autistic at the age of two-and-a-half, she couldn’t comprehend the waiting list.
When she heard about a treatment program called Son-Rise, she headed to the Internet, with no medical professionals to help her.
The home-based program operating in Europe since 1983, hasn’t caught on in Canada. While it doesn’t promise a cure, it comes close.
"Children with autism have the potential for extraordinary healing and growth," the site reads. The program emphasizes joining in your child’s behaviour instead of going against them.
So when William ran, skipped or hopped around the house, so did his sisters and parents. As they followed him, he began to check to see if they were there, and would smile if they were.
Despite the lack of medical expertise available, Kozij said she had no concerns about going to the States for a week to learn the program.
"I wasn’t frightened by making the decision at all, I felt it worked for our family," she said. "We were just left with a diagnosis, and we had to do something. This fit with our personality, our family. It was very child-directed. It gave the girls an opportunity to interact with William."
William, now six, has a support worker paid for by the family. "He is quite bright, same level as his peers, he’s not on special learning. But he lacks focus, has trouble following through, forgets what he’s doing, has social needs. But he’s not disruptive," she said.
Araujo sums up the sentiment of so many families who struggle to find their way through a world of bureaucratic mazes, myths, and mysteries.
"We can’t afford this, but we really have no choice because the alternative is too awful."
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TREATMENT METHODS
ABA: Children work one-on-one with a professional. Skills are broken down into smaller steps. Each step is taught using positive reinforcement and then grouped with the other steps until an entire skill is learned.
Other treatments which include ABA principles are referred to as Intensive Behavioural Intervention (IBI), Early Intensive Behavioural Intervention (EIBI) or Applied Intensive Behavioural Intervention (AIBI) or simply, behavioural treatment.
- Applied Verbal Behaviour: Often used within ABA-based programs. Focuses on verbal communication skills.
- Relationship Development Intervention (RDI): Teach children how to develop relationships, first with parents and later with peers. Intended to address development of social skills and friendships.
- Floor Time: Focuses on developmental gains. It’s a form of play therapy based on six stages of emotional development. Also known as Developmental, Individual-Difference, Relationship (DIR) model.
- The Son-Rise Program: Teaches families to join in with their children instead of going against them — accepting their behaviour instead of trying to fight it. Encouraged to join in on the repetitive and ritualistic behaviours.
- Diet: Research is ongoing about the effect of diet change, although there is plenty of positive anecdotal evidence, like the removal of gluten and casein from the diet, vitamin supplements, and yeast free diets.
- The DAN! Protocol: Involves a medically supervised combination of changes to the diet and implementation of vitamin and supplement therapy as a means of producing changes in autistic behaviours. Treatments to detoxify the body are also part of the program.
