Munson: Here’s what a national autism strategy can do

“We’re living a nightmare,” says the mother of a boy with autism. The mother is Carly Sutherland. The Bedford, Nova Scotia mom is not alone in dealing with a violent child.

It’s a desperate cry for help and more resources for families in crisis.

Elderly parents of autistic adults in a rural community in western Ontario are living with deep anxiety and worry at what will happen to their adult children when they are too old to care for them or when they’re gone.

Young bright children are unable to communicate with those closest to them, prisoners of their autism symptoms and deprived of the therapies that would unleash their talents.

Autistic Indigenous children both on and off reserve confront barriers to services.

Parents are exhausted, drained, unable to advocate for themselves.       

We have come a long way since 2007, the year of the Senate inquiry Pay Now Pay Later – Autism Families in Crisis. And yet we have not come far enough. Let me explain.

Just a few days ago, the Public Health Agency of Canada released a long-awaited report on key statistics for autism in Canada. I congratulate the federal government for this critical initiative, the National Autism Surveillance System, which represents a vital step towards understanding the impact of Autism Spectrum Disorder (ASD) in Canada. It begins to provide the evidence-based data needed to inform policy and programs.

ASD is the most common neurodevelopmental disorder diagnosed among children in Canada: One in 66 children is affected. ASD represents complex health, mental health and social issues and needs across the lifespan. Addressing them as a society requires multi-sectoral collaboration and partnerships among federal, provincial and territorial players.

What can a National Autism Strategy accomplish? A national strategy names the partners, what their role is and how they need to work collaboratively. It recognizes the federal, provincial and territorial jurisdictions and the areas of that collaboration. It gives meaning to the scientific research. It defines what federal leadership is. It names the gaps in policy and funding. It highlights best practices in all the multi-sectors.

A National Autism Strategy is a pathway to address these complex needs that involve multiple sectors and partners, governments, clinicians, practitioners, researchers, community-based support organizations and businesses. It inspires government organizations from health, mental health, education, social services, justice, employment, and housing to work together around common understandings and goals. A National Autism Strategy is a statement of leadership.

The federal government in its 2018 budget announced some program funding for two areas of initiative. It is hoped that this announcement will help us get to a national strategy.

Yet it is not enough. Governments and organizations are working in silos and missing opportunities to collaborate and bring innovative thinking. Too many communities are underserved and under-resourced.

Through the hard work of parents, autism advocates and enlightened policy and political players, the autism landscape in Canada is rich with ideas, energy, innovation, initiatives and solutions. The level of awareness of autism in Canadian society is ever sharper. Educational systems are taking some steps to make accommodations for students to develop to their potential. Health systems are developing and training specialists and multiplying resources for services – if you happen to live in the right community in Canada. The autism community in Canada is asking the federal government to lead an integrated approach to bring hope to individuals with autism and their families everywhere.

On April 18 and 19 in Ottawa, the Canadian Autism Leadership summit will bring together a large number of participants and stakeholders to share information, learn and work towards that National Autism Strategy.

Let us all speak in one voice.

Ontario Senator Jim Munson (Ottawa/Rideau Canal) is a vocal advocate for individuals with an autism spectrum disorder. His leadership in Parliament led to the adoption of An Act respecting World Autism Awareness Day and the landmark Senate report Pay Now or Pay Later: Autism Families in Crisis.

 

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