The Toronto Star
How Canada is starting to tackle the autism crisis
Senator Jim Munson
It’s almost 10 years since my eyes were first opened to autism and its daunting human and social implications. As I walked up to Parliament Hill one morning, I ran into a man peacefully protesting in front of the Centennial Flame. He and his wife had the heavy burden of caring for an autistic child, a son who could not even make eye contact with them. The boy was isolated as a result of his symptoms, and so too were they. The emotional and financial weight was too much.
The desperation that prompted him to make a protest sign and then stand on Parliament Hill that day was a kind of desperation I had never seen before. The intensity was etched in his eyes. He was hurting.
But he was also forthcoming and candid. And he certainly made his point with at least one person he met that morning.
I decided then and there that I had to learn more about autism and how, as a parliamentarian, I could make a positive difference in the lives of the many Canadians living with it.
I eventually found allies, but it wasn’t easy to find senators and MPs who understood autism and the crisis it had become. There are so many issues parliamentarians must grapple with and this was another one. Besides, most thought it was a provincial issue. But with a little perseverance, I launched an inquiry in the Senate.
The idea of getting a grasp of autism issues caught on. The Senate standing committee on social affairs, science and technology undertook a comprehensive study on autism funding, and in 2007 released its final report. The title, Pay Now or Pay Later: Autism Families in Crisis, intimated the core finding that “governments must pay now for autism therapy, services and supports in order to obtain the greatest return on investment. Otherwise, they will pay later in terms of much higher costs in future years for welfare, social services and institutional care.”
The report presented a series of hard-hitting recommendations for addressing the autism crisis: Stable funding for therapy throughout the country. A nation-wide public awareness campaign. Research programs. A knowledge exchange centre.
Among them, our call for a comprehensive national autism spectrum disorder (ASD) strategy stirred the most compelling and enduring debate. The autism community continues to this day to advocate that a national strategy is the only moral and effective response to the autism crisis.
I am often asked, “Do you think the government will ever commit to a national strategy?” My answer is yes. In fact, we have been progressing toward this for many years.
Despite a paltry initial response to Pay Now or Pay Later’s recommendations, the government has in recent years introduced meaningful programs and measures: Financial savings vehicles for parents of children with disabilities. Funding for the Canadian Institutes of Health Research to build on autism-related research. The creation within the Public Health Agency of Canada of a national surveillance system.
It’s a start.
In the absence of a national strategy, other levels of government and non-governmental groups have been filling in the gaps. Across Canada, grassroots organizations are delivering necessary but otherwise unavailable services — from referrals to co-ordination of early diagnosis and treatment.
Five years ago, in the same year Pay Now or Pay Later issued its call for a national strategy, the estimated rate of Canadian children being diagnosed with autism was one in 150. Today, it’s one in 88 — and will continue to rise.
October was Autism Awareness Month and many of us have lately been giving extra thought to autism. Awareness-building activities have been taking place in schools, community centres and other places where we gather and learn.
Reflecting on what I have learned from the autism community over the past decade, I am especially hopeful. Even the humblest of efforts, like the protest of one man on the Hill, can lead to significant outcomes. The improvements we want to see in the lives of people touched by autism might not come as quickly or in precisely the forms we would expect, but we are making inroads. The system we are constantly enhancing to address the autism crisis is reaching the doors of our federal government. These doors must open wider to bring all stakeholders into the same room to build a national ASD strategy.
Senator Jim Munson, a Liberal, is a long-time advocate for autism issues. In October his private member’s bill, S-206, An Act Respecting World Autism Awareness Day, passed clause-by-clause consideration by the House of Commons standing committee on health and will soon become law.