Queen Elizabeth II Diamond Jubilee Medal presentation to Vic Douse

Hello, everyone. It was 2010 when I last addressed many of you here at an Autism Society of PEI event.

At that time, the rate of children with an autism spectrum disorder was one in 110. Today, it is one in 88.

Canada is facing an increasingly complex and significant challenge.

One issue that I am currently researching is autism among First Nations people. Even without the benefit of hard data, we can easily gauge that the situation is critical. The federal government has to get a grasp of and take responsibility for what is happening.

And every day, thousands of children with an ASD are entering adulthood – with huge personal and social implications. Many of you know firsthand the stresses related to changes in routines and available resources and services that occur as children grow up and turn 18.

And, of course, it is not only the children who are getting older. Their parents who care for them are too – a fact that brings even more worry and uncertainty.

In an Ottawa Citizen special feature published last week, there was a profile of a woman who, as a teenager, was diagnosed with Asperger’s syndrome. For most of her life, she was high functioning. She even held a job for a few years. In her 30s, though, she began to change and was diagnosed with schizophrenia.

Her mother believes she does not have schizophrenia at all – that the doctors have misunderstood her daughter, who has trouble verbalizing her thoughts. To make matters worse, the anti-psychotic medications she has been prescribed are worsening her ASD symptoms.

In the coming years, I expect we will be hearing more and more stories about adults with a ‘dual diagnosis’ of autism and a mental illness.

As the autism crisis spreads throughout society, the situation is becoming desperate – but we have to remember that it is not hopeless.

In the past few years, Health Canada has been assigning more and more staff to monitor cases of and build a knowledge base about autism in Canada.

The surveillance we have been calling for is taking shape. If the government eventually shares its data with provinces to incorporate in their plans for health care and other areas under their jurisdiction, we will be one step closer to a national autism strategy.

I’m also pleased and proud to report that, after a complicated four-year journey – including two prorogations and one general election – my private member’s bill, An Act respecting World Autism Awareness Day, has finally been passed and is now law. This coming April 2nd, Canada will for the first time officially celebrate this important occasion.

In such an occasion as this evening’s gathering of true activists to the autism cause, I remain convinced that Canada needs a National Autism Strategy to address the inequalities in support to children and families. The more I learn more about the work of so many in this autism community of interest, researchers and scientists, policy makers, health-care professionals and families there is hope in the future. But we must share knowledge and services with equity and fairness. We must continue investing in research, we must establish standards of service and best practices. For instance, Neuro Dev Net, part of the Canadian Network of Centres of Excellence supports transformative research, works with a network of players in brain research and applied health care solutions.

Reading the Sunday New York Times yesterday morning again re-affirmed that dream of ours. The item that fired up my interest and imagination in this week’s news is that President Obama is about to announce the creation of a new exciting scientific project – perhaps the same kind as President Kennedy’s Space Project in the 1960’s. It is the creation of a multi-year research effort to produce an “activity map” of the human brain. The NYT article says and I quote:”This effort could develop new tools and techniques that would lead to a much deeper understanding of how the brain works, ….how the brain changes over time in response to learning, for instance.” The article goes on to predict that “there should be clinical benefits as well. The knowledge developed could enable biomedical scientists to find more accurate ways to diagnose and treat depression, schizophrenia, dementia, autism, stroke, Parkinson’s and other illnesses or injuries of the brain.”

Canada needs to invest in much greater measure into this kind of vision. We need a National Autism Strategy that pushes the boundaries of what we know and what we traditionally have been practising in mental health and support services.

Dr. Herb Emory of the University of Calgary who is researching ways of improving the issues of support to autism families believes in a National Autism Strategy that defines what theses autism services should look like. Let’s work together!

What I know from my ongoing relationship with you and the many other wonderful people I have met within the autism community is this: As long as we recognize and act in respect to the reality that autism impacts us all, we will ultimately succeed in addressing its challenges.

This is certainly the example set by today’s guest of honour – Vic Douse.

Vic grew up in Prince Edward Island. He attended university right here too. His career in computer science brought him to Ottawa for a time, but ultimately he came back home.

He is married and has two daughters – Ashley and Jewel.

At age five, his younger daughter Jewel was diagnosed with autism and a seizure disorder, which – in the words of Vic’s wife Colleen, changed the course of their family’s life.

All of a sudden, someone they love – someone who depends on them – was found to have a condition with many difficult, unpredictable symptoms.

Since Vic learned of Jewel’s condition, he has committed himself to researching and ensuring she receives medical and educational therapies best suited for her. Jewel is under the care of specialists in Halifax and will soon meet with a metabolic specialist at the University of California San Diego.

As busy as Vic is pursuing opportunities for Jewel to achieve cognitive and physical gains, he has found a way to blend his objectives for his family with compassion and actions for others impacted by autism.

Vic joined the Autism Society of PEI in 1999 and, one year later, became its president. As president, then past president and, now, as a member of the Board of Directors, he has consistently taken a leading role in building autism awareness across the province.

Vic also represented Island autism issues on a national level with Autism Society Canada, where he served as vice president until 2011.

Vic has advocated for people with autism through presentations to various provincial and federal government ministers and departments.

He was one of four parties who brought a case before the PEI Human Rights Commission alleging discrimination by the provincial government for using income testing on parents of children receiving benefits from the PEI Disability Support Program. In July 2007, after a six-year struggle, the commission found in favour of the families – and the province has since eliminated discriminatory income testing.

In preparation for this tribute today, I have talked with some of Vic’s friends and referred to background information they have provided. What all of you cherish and respect about him comes across clearly.

He is a personable and, by all accounts, very funny man. He is dependable and his commitment to autism issues and to the Island is boundless.

Above all, he loves his family. Colleen describes her husband’s involvement with autism this way: “Vic believes that his daughter and all others affected by autism can achieve their potential with appropriate medical and educational interventions and will continue to strive to achieve the goal of universal access to required interventions based on individual needs.”

Queen’s Diamond Jubilee Medals have been created to commemorate the 60th anniversary of Queen Elizabeth II. Throughout the year of this anniversary, they are being presented to Canadians who have made significant achievements and contributions. It is my honour this evening to present this medal to you, Vic Douse.

Thank you for turning the health challenges of your daughter Jewel into a cause that has comforted and helped hundreds of families, and that has made Canadians more knowledgeable about autism – and more empathetic. We have all gained from your hard work and your inspiring example.