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Autism Families in Crisis—Tenth Anniversary of Senate Report

Autism Families in Crisis—Tenth Anniversary of Senate Report

Autism Families in Crisis—Tenth Anniversary of Senate Report

Autism Families in Crisis—Tenth Anniversary of Senate Report

Published on 3 October 2017
Hansard and Statements by Senator Jim Munson

Hon. Jim Munson:

Honourable senators, this is Autism Awareness Month in this country. For us in the Senate, the journey along the autism road began a little over a decade ago. It is a journey that, in many ways, has just begun. It is immense in its complexity. It is emotionally charged. It is critically important.

The autism journey leads to us face hard questions about the social contract we Canadians make with one another and with our governments, and how we take care of one another. We know that autism affects 1 in 68 of our children. That means you’re talking about a son, daughter, grandson, granddaughter, neighbour or friend down the street. How many times over the last decade have I met someone who has come up to me and said, “I am so glad that you’re working on this issue in the Senate, because I have a friend who has a friend whose child has autism.” If you are not directly affected, someone right next door to you is touched by autism. You have read or watched stories and documentaries about autism, its complexity and the challenges it presents for families who deal with it alone more often than not.

We have come a long way since the report Pay Now Pay Later – Autism Families in Crisis that was tabled in the Senate in March 2007. Honourable senators, to put it bluntly, we haven’t come far enough. That is why we as senators in our collective voice this month are saying to the federal government today in 2017, “It is time to show leadership — real leadership — not a fragmented approach. You can do it.”

The motion reads that I will call the attention of the Senate to this, the tenth anniversary of its groundbreaking report Pay Now or Pay Later: Autism Families in Crisis, and ask that colleagues build on the progress made during the past decade and unanimously support the creation of a National Autism Strategy. Such a strategy would provide a legislative framework for research, early individual and family intervention and family assistance across the lifespan for those diagnosed with an autism spectrum disorder — a brain condition now affecting 1 in 68 Canadians.

Honourable senators, 10 years ago, we spoke in a unified, collective voice about autism families in crisis and what should happen. We had hearings. We listened to experts, and most importantly, we listened to families and self-advocates. In fact, it was one of our witnesses, a few may remember here, Jason Olford of Fredericton, himself on the spectrum, who gave the report its title.

Jason told us:

. . . if you pay for it now, look at the return you will get on your investment. The people with autism will get out in the real world and get jobs, and that will stimulate the economy. Or you can pay later, which means they will go into group homes and it will cost the taxpayers a lot of money in the long run to keep them there.

We called our report Pay Now or Pay Later: Autism Families in Crisis.

Honourable senators, later has arrived, and we are paying for it. Families are still in crisis. Autism issues are not only childhood issues. They are lifespan issues. It is a crisis at every phase of an autistic person’s life. One in 68 have some form of autism; think about it. ASD is the most common neurodevelopmental disorder diagnosed among children in Canada today. Autism is the fastest growing and most commonly diagnosed neurological disorder in Canada.

Autism occurs in all racial, ethnic and socio-economic groups. Autism is a lifelong spectrum disorder. We know that early intervention is critical to a child’s chances of reversing some of the effects of autism. To add to the complexity, co-occurring mental health conditions such as anxiety and depression are common in individuals with ASD. The average extra cost of raising an autistic child in Canada is estimated at $60,000 a year.

It is estimated that 80 to 85 per cent of adults with autism are unemployed or underemployed, meaning the great majority live below the poverty line. People with autism are seven times more likely than the general population to come into contact with the law.

Honourable senators, the number of Canadian families struggling and dealing with this situation is unacceptable. Imagine a child who was eight years old a decade ago when we had our report. He or she is now 18. Gone are whatever services that child received during childhood and early adolescence. The child is now an adult. Precious time has been lost. Families are in financial paralysis. They are exhausted physically and mentally. They are alone. They are beside themselves as to what to do next.

Honourable senators, there is a crisis. More and more children are being diagnosed in all parts of our country. One autistic child’s promising future in Toronto is one autistic child’s hopeless future in another province. Individuals with ASD fall into a spectrum, and their conditions vary. For some, the limitations are extraordinary. For others, there are limitless possibilities.

Since 2007, when Pay Now Pay Later: Autism Families in Crisis was tabled, governments have partially listened. The Conservative federal government pursued a number of initiatives that have become key components of what could become a national strategy, and upon which we can build. For instance, the Public Health Agency of Canada is establishing a National ASD Surveillance System and working with provinces and territories to collect and track reliable data around prevalence, compare patterns and begin to report on their findings by 2018. Through the Canadian Institutes of Health Research, the federal government invests $8 million annually to research related to ASD. The Opportunities Fund for Persons with Disabilities has led to the creation of such employment programs as Ready, Willing and Able.

There have been changes, thanks to Minister Flaherty at the time, to the disability tax benefits. We also know that the Minister of Sport and Persons with Disabilities is developing new federal accessibility legislation.

Public awareness of autism has increased exponentially. People are understanding more about autism and neurodiversity, and its diverse manifestations and potential. As science and research demystify the potential of brain plasticity and the potential to reverse some of the effects of autism, as professionals develop evidence-based approaches and therapies and social policies, we are beginning to see the transformational power of combined research and practice on the hopes and potential of individuals to lead integrated and more productive lives in a more tolerant society.

Great things are happening in isolated places. Great things need to be happen everywhere in Canada. Yet, none of this is enough. If you have a lower income, if you live away from urban centres, if you live in the North, if you live in indigenous communities, you cannot dream of a future full of hope. Services and assistance to individuals and to families during early childhood, during school age, in later adolescence, as young adults, are not there. You are alone.

One of the major impacts of Pay Now Pay Later – Autism Families in Crisis was the creation of CASDA, the Canadian Autism Spectrum Disorder Alliance. CASDA became the voice of all those involved in finding answers and solutions: families, self-advocates, scientists and researchers, professional services specialists, educators, advocacy groups. CASDA has invested in a number of evidence-based initiatives to gather data. CASDA, in fact, completed this amazing survey in 2015 which canvassed input from almost 5,000 Canadians.

In 2017, CASDA completed the Canadian Autism Partnership Project, which was informed and vetted by over 5,000 Canadians, including input from 3,650 parents and individuals with ASD. Drawing upon the extensive data derived from these projects, CASDA and the federal government are now armed with current national information that can inspire a thoughtful and evidence-based national ASD strategy. Together, the federal and provincial governments, along with the leaders within the autism sector across the country, can address the barriers that diminish the opportunities for fully engaged lives by Canadians with ASD based on solid information.

When the present government came to power two years ago, exciting ideas and language began to be heard and understood in many areas of public policy. The ideas of fairness, inclusion, innovation and collaboration across multi-sector issues began to speak to the notion of what kind of society we Canadians want to be. It was exciting, and it continues to be exciting in order to address Canada’s biggest challenges.

The minister was just here; I wish he was here for an hour, because I had a lot more questions about this issue.

In his budget, he said:

We simply cannot claim success as a country unless everyone has a real and fair chance at success. Health and wellness, safety and security, inclusion and opportunity go hand in hand. Making sure that all Canadians can achieve their full potential is — and will continue to be — one of the Government’s top priorities.

Did you notice what those words were? He said “all Canadians.”

Honourable senators, a national ASD strategy is easily aligned with the priorities of the government. The current budget — think about it — could theoretically provide supports for Canadians with ASD. Yet over and over again, history has shown that unless goals, targets and programs are specifically identified as ASD-focused, those Canadians will not be included in the actions coming out of new initiatives.

Honourable senators, these statements come from the March budget. They set the tone and have potential to guide the creation of an integrated ASD road map for Canada. The provinces and territories want it, the autism community wants it. Canada needs it.

When there is a group of Canadians that experience an 80 per cent unemployment rate, that group deserves to get attention and action. When there is a group of Canadians experiencing a 50 per cent rate of mental health challenges, that group deserves to get attention and action.

**When indigenous communities identify that their participation in ASD-related services is blocked by systemic racism and social isolation, that issue requires our attention and action. We have a government that speaks of fairness, inclusion and collaboration. Honourable senators, as we speak during this month of October, October being Autism Awareness Month, let’s use our influence to make sure Canadians with ASD are in the picture.

Finally, what does federal leadership mean? It means being innovative and creating a model of collaboration with others; a common road map. It means working with provincial partners to create new integrated pathways and solutions across multiple sectors. It means finding shared funding mechanisms together; autism doesn’t have any borders, honourable senators. It means providing financial support for critical life-changing therapy. It means sharing knowledge and standards.

Honourable senators, there are two contrasting stories of autism in my personal journey. In my world, kids with autism are able to use their extraordinary talents in different creative ways to contribute to society. Think of this picture: My friends at Spectrum Productions in Montreal bring together young autistic adults in a workshop setting to create wonderful animated films and other videos. They have become successful enough to be hired to create corporate films. Some are being approached by animation studios. They are leading creative, productive lives.

Now let’s look at the scene in rural Ontario, where I was in meetings not that long ago with a group in the basement of a church on a Sunday night. There was snow and it was a miserable night. People were pouring out their emotions about the world of living in inclusion and autism. Imagine a mother in this country running scared down a country road, while her normally loving son, who has autism, is having an angry outburst. She is not running toward him, but away from him for her own protection. The normal instinct is to call the police and the right instinct is for all of us to step in and help. We must be there for her, and her son.

In closing, honourable senators, I’ve been passionate about this subject for some time, I know that other senators will be speaking and I’m full of gratitude for that. The moving words of wisdom of our new Governor General, Julie Payette, whom we sat and watched here yesterday in this chamber, are an inspiration, aren’t they?

The Hon. the Speaker: Senator Munson, your time has expired. Do you need more time?

Senator Munson: Two more minutes.

The Hon. the Speaker: Is leave granted honourable senators?

Hon. Senators: Agreed.

Senator Munson: We all sat here and watched her. I couldn’t believe the way she was speaking. Believe it or not, after 14 years I sometimes get nervous standing up amongst you and having a conversation. I don’t know why, but I guess when you get passionate and emotional about something that’s what happens. But you watched her stand where His Honour’s chair is and speak to Canadians with her words. They are words worth repeating. She said:

I’m a true believer in the strength of teamwork, in the power of dreams, and in the absolute necessity of a support structure.

. . . anyone can accomplish anything and rise to the challenge as long as they are willing to work with others, to let go of their personal agenda . . . and to do what is right for the common good.

. . . it’s our duty to some extent to help improve the lives of people in our community; to diminish the gap in the inequities here and elsewhere. . . . as partners in a collective spirit.

What positive words to remember in what I consider something incredibly important for me.

Imagine, honourable senators, the Senate of Canada speaking in one voice in support of the autism community. Imagine, honourable senators: We can do it again in one strong voice by telling the federal government to take up our challenge, show national leadership and be a partner on our journey — a Canadian journey of compassion, of empathy and of doing what is right.

Thank you, honourable senators.