Tuesday, March 25, 2008

The Words Within

Carly, uses a computer to communicate with her family, a rarity amongst those suffering from autism.

Carly uses a computer to communicate with her family, a rarity amongst those suffering from autism.

Nicole Walton-Allen says ABA therapy can make a dramatic difference for autistic children.

Nicole Walton-Allen says ABA therapy can make a dramatic difference for autistic children.

Carly's father, Arthur Fleishmann speaks with CTV's Avis Favaro.

Carly's father, Arthur Fleishmann speaks with CTV's Avis Favaro.

Kristen Yu, W-FIVE

It's a lifelong disorder with no known cause or cure.

Autism spectrum disorder affects approximately one in 150 children in North America - and the rates of diagnosis are steadily rising. Despite its prevalence, the disorder has long remained a mystery to all but those afflicted.

Part of the reason why medical experts still don't know how to prevent or treat it is because the disorder inhibits a person's ability to communicate or develop social relationships.

Now, a 13-year-old girl from Toronto is offering a rare glimpse into the secret world of autism and has become a symbol of hope for parents and families coping with an autistic child. Carly Fleischmann is unable to speak a single syllable. But two years ago, she defied the odds and started typing words with the help of specialized computer software.

Her inner voice speaks volumes. "I am an autistic girl who has learned to spell and can tell people to stop looking at me like I am helpless. I am cute, funny and I like to have fun," Carly writes.

Her father, Arthur Fleischmann, says that the family was stunned. "We realized inside was this intelligent articulate emotive person we had never met. It was just unbelievable because it opened up a whole new way of looking at her."

In another computer-generated communication, Carly provides unique insight into what it's like to live with the disorder: "It feels like my legs are on fire and a million ants are crawling up my arms,"

Carly's family insists she isn't a miracle case. They credit her intelligence, and years of Applied Behaviour Analysis (ABA) therapy, for her progress. ABA is an intensive, one-on-one treatment where therapists teach children through positive reinforcement and repetition.

The therapy can be an exhaustive process. Goals are broken down into the smallest task possible and taught over and over again. For instance, Carly is often rewarded with her favourite snacks when she types, but this exchange must be repeated each time to increase and maintain her behaviour.

In Carly's case, the therapy includes a team of 12 part-time therapists working in shifts, and amounts to about 40 hours a week. Her family strongly believes the program is partly what enabled her to share her story through the written word. Carly currently uses a word-recognition and speech-feedback software called WordQ, developed at Bloorview Kids Rehab in Toronto. (Then called the Bloorview MacMillan Children's Centre, the work at Bloorview was featured in the W-FIVE documentary Help and Hope in 2005.)

The software predicts the most likely words a child is trying to type after the first few letters are keyed in. It significantly speeds up the process and makes it much easier for children with learning disabilities to communicate in writing.

Nicole Walton-Allen, a psychologist and director of the Behaviour Institute in Ontario, runs one of Canada's largest private ABA programs. She says therapy can make a dramatic difference for autistic children.

For her, Carly's case points to the importance of such programs. "It supports the notion for me that you can't give up on these children because it is the cumulative effect of a lot of time and energy that have gone into her," she says.

Indeed, studies suggest that ABA may be the best form of treatment for children with autism. Research indicates that the therapy is effective in increasing behaviours and teaching new skills, particularly when implemented intensively and early in life.

But Carly is one of a fortunate few because her parents have funded all of her therapy -- which amounts to about 80 thousand dollars a year. For countless other parents across the country, it's simply not a feasible reality.

The vast majority of autistic children in Canada have little to no access to intensive therapy of any sort. Each province offers varying levels of treatment, and in most cases, families are put on long wait lists.

  • Alberta: Funds up to $60,000 a year per child for ABA up to age eighteen
  • British Columbia: Funds up to $20,000 a year up to age six
  • Manitoba: Funds 36 hours of ABA per week up to age six, with five hours provided by the family
  • New Brunswick: Funds 20 hours of intervention up to age five
  • Newfoundland & Labrador: Funds up to $40,000 for 30 hours a week for two years up to age six
  • Northwest Territories: Funds ABA for pre-school and school-aged children
  • Nunavut: No program in place
  • Nova Scotia: Funds 15 hours a week for six months, then 10 hours a week for a further six months. Only available for a year to randomly selected children up to six years of age.
  • Ontario: Funds some ABA programs with a previous cut-off at age six. Now, parents complain that children are being cut off arbitrarily if they are doing poorly or doing too well
  • Prince Edward Island: Funds up to $200 a week up to the age six
  • Quebec: Funds 20 hours per week for ABA programs for ages two to five
  • Saskatchewan: Funds up to 10 hours with very limited availability or access
  • Yukon: Full coverage up to the age nineteen
    Source: Autism Society of Canada

This has prompted organizations like the Families for Early Autism Treatment of BC (FEAT BC) to mobilize parents across the country. They are now launching a nation-wide campaign to elect MPs who will vote for legislation to include autism treatment under the health care system.

Many are drawing hope and inspiration from Carly's story. "I recently learned that dreams can come true," the 13-year-old writes. "If a child like me or their parents' dream is for them to communicate one day, anything is possible if you believe."

Due to copyright restrictions W-FIVE's video documentary is not currently available for on-line viewing. We will make it available as soon as possible.

Original here

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