Canadian ASD Leadership Summit Address

Good morning, everyone. It seems the more deeply something matters to us, the harder it is to describe. The words elude and even seem to taunt us.

Anyone who knows me knows I am rarely at a loss for words. Describing what this, the first-ever Canadian ASD Leadership Summit, means to me and represents for this country’s autism community is no small challenge. Most of us here can remember only a decade ago when the prospect of a gathering like this was inconceivable. Autism prevented people from taking part in the dynamics of their communities. It certainly wasn’t what it is today – a cause around which thought leaders have come together.

Looking around this room, recognizing so many friends and acquaintances, I am convinced that it is only a matter of time before our goals are realized. At this moment and within the current environment, I have never, ever, believed more in a national Autism Spectrum Disorder strategy. The absolute need for one, as well as our capacity to achieve one.

We are all in this together and the discussions and exchanges of ideas you are about to embark on represent a major steppingstone toward inciting our federal government to take leadership in improving the lives of every autistic child and adult in Canada.

The various experiences we undergo, what we learn and who we meet along the way are also steppingstones. Each of us has had an autism journey. Some of you have heard the story of mine already, but I will share it today as a way of introducing myself to those of you who haven’t, and to spark reflections on your own journeys.

It’s been about 12 years since I first realized how difficult life can be for people affected by autism.

It began with a chance encounter. As I was walking up the Hill to my office, I caught sight of a man who was quietly “protesting,” for lack of a better word, for support for his autistic son. I stopped to listen to what he had to say about his life.

His son’s need for constant care. The financial costs and the pressures to meet those costs. The scarcity of support and resources. The anxiety. The isolation.

These experiences were not exclusive to this young father. I understood this. They were and are still the experiences of thousands of families affected by autism.

That encounter was an awakening for me. I wanted to find out more about this disorder. To help autistic children and their families.

At that time, I was new in my role as a senator. Fortunately, though, I had forged some strong associations with a few exceptional colleagues who were experienced at using their positions to promote social causes. They were mentors for me. They were also receptive to my desire to help people with autism.

The Senate Committee on Social Affairs, Science and Technology responded to my insistence and undertook a lengthy, comprehensive study. In March 2007, the committee released its report on that study, Pay Now or Pay Later – Autism Families in Crisis.

Autism advocates across Canada applauded the report’s recommendations, particularly the call for the federal government to develop a national ASD strategy. This goal has been a significant catalyst for Canada’s autism advocates to pull together to ensure their collective voice is heard. As a result, we have a community.

The autism community is a collection of many voices. When it comes to achieving our goals for those with ASD, we must be one voice. One strong voice advocating what we believe is best.

It takes commitment to cooperate and break down silos of expertise to work with individuals and organizations that, though like-minded, are also different.

Established just months following the release of the Senate autism report, the Canadian Autism Spectrum Disorder Alliance embodies such commitment. Eight years since its formation, CASDA continues to grow and is unyielding in its determination to engage all levels of government in addressing its call for inclusion and improved, coordinated services.

What is at stake is what has always been at stake. Human rights. The rights of everyone to be treated equally. We have not always described it in these terms, but our work and our society have advanced enough that we now can.

There is always more to learn about the symptoms of autism and how they impact the health and lives of those within the spectrum. Working closely and regularly with autistic people, you appreciate what can be gained from looking past the autism. To see the human being.

From this point of view, injustices and the moral necessity to correct them are in sharp focus. We are better equipped to identify and act in respect to the real-life needs of human beings impacted by autism.

A bridge to nowhere. I use this expression to describe what people with autism confront when they make the transition from being children to becoming adults. This transition carries serious and difficult social and personal implications.

Once children with autism turn 18, they lose their pediatricians. They lose their eligibility for publicly funded speech and language services and behavioural therapy. At 21, they can no longer attend public school. Only a lucky few live in group homes, attend day programs or have even part-time jobs.

And, of course, it is not only the children with autism who are getting older. Their parents who care for them are too – which heaps worry on uncertainty, and creates desperation within families.

Some of you here have talked with me about what is best for people with autism. What they need and want most is what we all need and want most to realize our human potential – opportunities to learn, to acquire life skills and to become as independent as possible. Where there is a lack of opportunities to support transitions, gaps must be filled and changes introduced. Inclusion has to be an explicit social and policy priority. Ignoring the necessity for and failing to create these vital opportunities is a human rights travesty.

Like each of your journeys, mine has included emotional, often heart-wrenching stories about people. People from anywhere in Canada. From Woodstock, New Brunswick, for instance. Not far from where I come from.

Two years ago, I met with a group of parents there who were raising their autistic children without the benefit of even knowing what public resources they were eligible for or how to access them. Meanwhile, the provincial government was puttering away less than two hours down the highway from their homes – where they struggled in isolation, without support or guidance.

On a stormy night in Walton, Ontario, near Lake Huron, I sat with another group of parents. One of them was a mother who spoke tearfully about her experiences raising her autistic son who is prone to violence. She described how her only defence against being physically hurt by him was that she could still outrun him. She must have other options – but it is quite likely, those options are actually more drastic and risky.

It is 2015, and she has to run from her own son down an isolated country road in the middle of the night.

Can you imagine? Yes, I know you can. We have all heard stories like these again and again.

We have also heard inspirational stories. There is a lot of good being accomplished. All of you in this room have achieved advancements in research, treatments, therapies, social advocacy, program development and other facets of the challenge.

Here in Ottawa, for example, we have Suzanne Jacobson’s Quick Start and Kick Start programs. In Montreal, we have Spectrum Productions supporting the creativity of youth on the autism spectrum.

We will have the opportunity tomorrow to hear more about these and other remarkable programs and initiatives to meet needs and to deliver guidance and encouragement that enliven people and help them explore their abilities. The Promising Practices Snap Shots scheduled in the agenda are a great concept for showcasing what is happening within our vast community and the scope of new, innovative approaches to instilling more balance in the lives of people with autism.

Throughout this country and within our autism community, evidence of compassion and respect for the potential in people with autism is everywhere. We are always progressing.

Even within the federal government, there are a few promising signs. It has introduced improvements to our capacity to address the autism crisis. The Income Tax Act includes some helpful provisions such as disability tax credits. National surveillance is in its early stages. A research chair in ASD has recently been created at York University. In our last federal budget, a generous investment was allocated to supporting Ready, Willing and Able, which assists people with disabilities enter the workforce.

All of these actions support the human right to live fully and contribute to society. But like all the amazing offerings from this country’s autism community, they would be so much more effective if implemented strategically – as parts of a national machine.

Several years ago in the Senate, we called for the creation of a Canadian Mental Health Commission. We now have one. Why not a Canadian Autism Commission? It would be a suitable starting point for a national ASD strategy.

In the absence of strong, reliable federal government commitment, here we are. With the national needs assessment survey complete and a report prepared, we have strong evidence of real human experiences, gaps in services and what should be priority areas for future work. You will discuss this evidence and, by the time this summit wraps up, you will have arrived at some important decisions.

While you and all members of the autism community are realizing remarkable successes, the autism challenge is also evolving – becoming increasingly widespread and complex.

Right here in Ottawa, not far from where we are gathered, we have had recent incidents of police actually handcuffing young schoolchildren in situations where teachers could not manage their aggression stemming from autism.

It doesn’t do any good to blame anyone. That gets you nowhere. Here at this summit, it is my hope we will issue a national call to help police, teachers and front-line workers in public settings to acquire the right tools and learn how to comfort autistic children who become aggressive. To understand the experiences of these children and help them cope. We owe it to our children to be a guiding force in understanding their reality.

At this summit, it is my overriding hope that you construct a road map through this and all pieces of the puzzle to arrive at a good place.

This is Ottawa. This is a political town. And this is an election year.

A smart party would embrace a call for a national ASD strategy. If all three major parties endorsed a strategy, then I as an independent Senator will endorse all of them on that platform in an election campaign.

Last fall, I was in Calgary visiting a number of first-class organizations like the Sinneave Centre and the Society for the Treatment of Autism. At the treatment centre, I found myself in a special place, where an intensive behavioural therapist was, well, playing in a sensory room with a five-year-old boy named Tahir.

I call it playing, but that word doesn’t quite capture what was taking place or the impact it was having on this little boy. The therapist was essentially leading Tahir to a steppingstone – preparing him to one day take his place as an adult in our society.
As soon as I entered the room and got settled, he was practically in my lap. Smiling non-stop and actually squealing with delight, he at one point grabbed my hand and we began to rock back and forth. Back and forth.

We were communicating. We were, as they say, in the moment.

I was told that this was not the same boy who first arrived for treatment years before. For the first two years there, there were no smiles. There was no interaction with anyone. Tahir was completely detached from others, unable to express his beautiful feelings.

As a society, we owe it to Tahir to build a bridge to somewhere. To a place where he can function, where he can live, where he can contribute to the world, and where he will be loved. Loved for who he is as a person, not just someone who is autistic. As a person like you and me.

What I know from my ongoing relationship with people who make up the autism community is that your capacity to care and heed your instincts to help others is unbeatable. It is certainly more formidable than the hesitancy and resistance of our elected decision-makers to redefining social goals and priorities.

At this summit, as you undertake discussions and the process of learning from each other and reaching decisions about next steps, you will most certainly nudge our country forward. You will make an important difference for Tahir and countless others.

I am grateful to you for your attention and to the organizers of this important event for inviting my wife Ginette and I to take part in Canada’s inaugural autism leadership summit. It is a pleasure and an honour to be here.