Autism Inquiry

Autism Families in Crisis

Tenth Anniversary of Senate Report—Inquiry—Debate Continued

On the Order:

Resuming debate on the inquiry of the Honourable Senator Munson, calling the attention of the Senate to the 10th anniversary of its groundbreaking report Pay Now or Pay Later: Autism Families in Crisis.

Hon. Nancy Greene Raine: Honourable senators, I’m pleased to rise today and speak on the subject of autism, and to recognize the work that Senator Munson and his colleagues did on the groundbreaking Senate report Pay Now or Pay Later: Autism Families in Crisis.

In the 10 years since this report was tabled, there is no doubt that the awareness of autism among many Canadians has improved. However, there is still much to be done to ensure that families have the best options to choose from and that our society continues to lessen the impact of families caring for autistic children and adults.

My first personal encounter with autism was about 20 years ago, when a family from the Vancouver area checked into our condominium hotel at Sun Peaks to take advantage of low off-season rates for an extended stay. They had come to the Kamloops area to find out about the Giant Steps West program that had been established some years earlier. It was one of British Columbia’s first programs for autistic children and followed a program that had been developed in Montreal.

Two of the family’s children suffered from autism, and my first impression was that they were out of control and that the parents were not properly dealing with their behaviour. I’m pretty sure this is many people’s first impression when encountering autistic children. Since then I’ve learned that autism is very complex, and also unfortunately that programs to assist families are still few and far between. I salute all the people working with the various organizations that make up the Canadian Autism Spectrum Disorder Alliance as they work together not only to increase public awareness of autism but also to build a strategy and road map to a better future.

Honourable senators, following my introduction to autism and with my “antennas up,” some years later I read a very interesting book on the latest brain research, including a very interesting chapter on Dr. Michael Merzenich, one of the foremost researchers on brain plasticity. His research led to the development of a series of brain plasticity-based computer programs disguised as children’s games. The Fast ForWord program allows therapists to work with children to make lasting changes in cognition and perception. In some cases, people who have had a lifetime of cognitive difficulty have gotten results after only 30 to 60 hours of training. But what caught my eye was to read that the program had also helped a number of autistic children.

That was some years ago. Today, I have learned that the Fast ForWord program is recognized as one of the best tools for cognitive learning. The beautiful thing about the program is that it not only helps people with reading comprehension and other typical “school” skills, but it can also change the way in which autistic children deal with the world around them — in other words, in their day-to-day social interactions.

I contacted the Scientific Learning company in Oakland, California, to find out how the program is delivered and, through them, was given contacts of several certified providers in British Columbia. All three people I spoke to were very supportive of the Fast ForWord program and its helpfulness when working with autistic children. There is a lot of information available online and many testimonials to support the use of the program. I must clarify, however, that this is not a computer program that you can just purchase; it’s a tool that needs to be used in conjunction with professional speech and language therapists to achieve its full potential.

Having learned more about Fast ForWord, I then visited the Chris Rose Therapy Centre for Autism in Kamloops, a wonderful facility that grew out of the early Giant Steps West program that I’d first heard about 20 years ago. I was surprised to learn that they didn’t know about Fast ForWord, but they were very interested in finding out about it.

Next I called some folks I know who have worked for years planning and fundraising for the Pacific Autism Family Network and who have long recognized the need for a better approach to assisting families dealing with autism. Their work came to fruition last November when the new $28 million GoodLife Fitness Autism Family Hub in Richmond, British Columbia, was opened, the first facility of its kind in North America. It is a state-of-the-art building that is slated to become a one-stop shop for families looking for support with autism and related disorders. It will include clinics, labs, classrooms, observation rooms and research spaces.

The Pacific Autism Family Network recognizes that one of the greatest issues for families dealing with individuals on the autism spectrum in British Columbia and in many parts of Canada is the lack of reliable information, leading to inconsistent and often inappropriate service delivery, therapies and inadequate resources. Currently in British Columbia, the wait time for a diagnosis can be years, with the average age of a confirmed diagnosis being 6 years old. By then, the most valuable years for therapy, from age 2 to 6, have already been lost.

With long wait times for diagnosis and then navigating the often inadequately responsive silos of medicine, education, research, psychological and social work, it is no doubt that it’s very stressful for all concerned.

In addition, honourable senators, few teachers, social workers or medical practitioners have any specialized training in autism, and the wait to see the specialists we have can be years long.

If parents don’t know exactly what their child needs or if it’s not available, they are extremely vulnerable to misinformation and to those trying to sell them a “quick fix.” Desperate, they may spend tens of thousands of dollars of their own money on what seems a promising program only to find out later that the person who sold it to them has no recognized credentials and that the program has no reliable evidence base whatsoever.

A visionary part of the Pacific Family Autism Centre is a research wing called Inform-Every Autism. The intent is to reach out to stakeholders all across Canada to collect and share information that can then be readily available to Canadians, no matter where they live.

It was most gratifying to see that last week the new health minister of British Columbia tour the Pacific Autism Family Centre, and it is hoped that the B.C. government will commit to ongoing financial support for the Inform-Every Autism research hub.

Honourable senators, I am an optimist by nature and would be quick to jump at what may be a valid quick fix, so I’m really pleased to see the establishment of a new research hub that will break down the silos and be open to evaluating new therapy programs. I’m pretty sure that even a private-sector product such as Fast ForWord will, if it proves useful, be able to be quickly adapted as a tool for therapists in the autism field.

Thank you very much, and thank you to Senator Munson for this really important inquiry.

(On motion of Senator Christmas, debate adjourned.)