That, given that: (a) Autism Spectrum Disorder (“autism”) is widely considered the fastest growing neurological disorder in Canada, impacting an estimated 1 in 68 children; (b) it is a lifelong diagnosis that manifests itself in a wide-range of symptoms, including difficulty communicating, social impairments, and restricted and repetitive behaviour; (c) individuals with autism and their families face unique challenges over their lifespan, often leading to families in crisis situations; and (d) Autism Spectrum Disorder is not just a health issue — it has overarching implications for Canadian society as a whole; accordingly, the House call on the government to grant the $19 million over 5 years requested by the Canadian Autism Partnership working group, Self-Advocates advisory group, and the Canadian Autism Spectrum Disorders Alliance, in order to establish a Canadian Autism Partnership that would support families and address key issues such as information sharing and research, early detection, diagnosis and treatment.
Mr. Speaker, today is a very important day. I believe today is the first time the House has spent a full day talking about the challenges faced by Canadians living with autism and their families.
I am going to start by thanking a few people. Obviously, I am going to start by thanking my son, Jaden, who, to me, is an absolute superhero. This is a 21-year-old who is non-verbal, yet the way he communicates with people on a one-to-one basis is unlike anyone I have ever seen. He has a way to connect with people, without speaking, that we have trouble with in our regular lives.
I want to thank my amazing daughter, Jenae, who turns 18 this week. She is graduating from high school this month as well. It is hard to believe.
I speak for a living and do interviews for a living, but Jenae probably gave the best answer I have ever heard to an interview question when she was 13 years old. She was asked by Steve Paikin, in an interview about her brother, if she ever wished her brother was “normal”, like every other kid. Jenae's response was that since Jaden was diagnosed with autism before she was born, she didn't exactly know what a normal brother was like, so Jaden, having autism, kind of was her normal. Steve asked her if she liked him just the way he was. She said that if Jaden did not have autism, or was cured or something, he would not be the same as Jaden was then. Jenae was very wise at 13 years old talking about how Jaden has impacted her life.
I also want to thank Jaden's mother, Debi. We have been apart for several years now, but Debi is an absolute champion for Jaden and has been a champion for Jaden throughout his life. When it came to advocating for him at a young age for early intervention, when it came to working through the school system and in the battle to try to get an aide for him, she was a pit bull for him in terms of that advocacy. We were able to get the help he needed every step of the way because of her advocacy and her championing of his interests.
I have a few more people to thank. I want to thank my staff, who put in tireless hours month after month. We work on a lot of big things: the global autism partnership; the Canadian autism partnership; global maternal health and the rights of women and girls around the world; managing the largest constituency in the country, out of 338 constituencies; and working with constituents. I thank them.
I am going to go back a little in time and thank Stephen Harper, the prime minister in 2015, who initiated the Canadian autism partnership working group, along with former finance minister Joe Oliver and our health minister at the time, who is now our current Leader of the Opposition. In budget 2015, there was $2 million put in place to establish the Canadian autism partnership working group.
There were some staff members at that time who were critical in helping me understand the road to getting there. I will thank Rachel Curran, Sean Speer, and David van Hemmen, in particular, for their help in getting there.
In my global work, I get to work with some key individuals and global organizations that have come to support the Canadian autism partnership. Huge thanks go to Save the Children, Plan International Canada, World Vision Canada, and UNICEF Canada, which have really stepped up on social media to support this initiative.
Global Citizen is an organization that works to alleviate poverty and fight inequality around the world on behalf of the world's most vulnerable. Global Citizen in Canada has chosen, as its first domestic initiative, to champion the Canadian autism partnership, recognizing the challenges faced by Canadian families living with autism. A huge thanks goes to the folks at Global Citizen for the great work they have done.
We have also had some support from friends in the hockey world. I formerly worked for the Edmonton Oilers for 10 years before I was elected. We have had support on social media from Hayley Wickenheiser, Elliotte Friedman, Steve Warne, right here in Ottawa, and Kodette LaBarbera. Again, they have huge platforms and are very busy at this time, and they have taken the time to make their point on social media in support of the Canadian autism partnership. I thank them.
Most important, probably, beyond my family, is to thank the stakeholders, the working groups, and the incredible group of self-advocates, adults living with autism who can articulate, in a unique way, what it is like to have autism.
I had a really great conversation with one of them, Patricia, this weekend. We talked about the importance of the Canadian autism partnership. Every single time I talked to a self-advocate, I learn something new. In Patricia's case, it was the word “autistic“ versus “having autism”.
I have always talked about Jaden having autism, because I have always thought it was something he has, not something he is, but Patricia reinforced for me that for some in the autism community, they like to be defined as autistic. It is who they are, not something they have. It is an important differentiation, and I got an understanding I did not have before we had that conversation this past weekend.
Of course, I want to thank people who come up to me in random places who appreciate the work we are doing and who work to understand. I remember one time a few years back, Jaden and I were in New York at the Radio City Music Hall. Jaden, Jenae, and I were watching a Kelly Clarkson concert. Jaden dropped a pin on the floor and was obsessed with this pin the entire concert, so the entire concert, for me and Jaden, was spent with Jaden rummaging around for the pin, bumping the chair in front of him. We never did find the pin, but during the entire concert, that was the case, with me trying to grab him and play with him and get his attention away from it. The person in front of us, whose seat he had been bumping the whole time, turned around afterward. I thought she was going to be upset, and she said, “You are the best dad in the world”. This complete stranger had noticed what was going on, and rather than being upset about it, rather than ignoring it and just walking away, she took time to let me know that she noticed and to let me know that she understood that it was difficult. I had tears in my eyes, as one can imagine, leaving that concert. She was someone I will never meet again. I never got the person's name. She never got my name, but in that moment, it was that level of understanding that, as parents of kids with autism or family members of people with autism, we need. We need that understanding more and more in our society when different things are happening.
When Jaden was three, as we were walking out of a restaurant, he grabbed a drink of someone's beer off a table, because he was thirsty, there was a glass there, and he did not understand that he was not supposed to have it. There was the time we were at an Oilers hockey game, when Jaden was nine, and he suddenly, out of nowhere, reached over the shoulder of the five-year-old girl in front of him and grabbed the ice cream off the top of her cone, as if he had a snowball, and started eating it out of his hand, with ice cream dripping down his fingers. I said to the dad, “I'm so sorry, Jaden has autism”, and he understood. Of course, the five-year-old girl did not understand at all. We explained it, we got her a new ice cream at the intermission, and everything was good. That is life with Jaden, and it can be challenging sometimes.
When I talk about the Canadian autism partnership and the work we do on autism here in this House, a lot of people make the mistake of thinking that I am championing my son's interests. Jaden has lived in one of the best places in the world to live, Alberta, if one has a child with autism. What I am really championing is for every person living with autism in Canada to have the same opportunities Jaden has had.
When Jaden was two, we realized he had autism. It took a bit to get a diagnosis. It took a couple of months to get in and then maybe a couple of months to get treatment, but Jaden started his early intervention at about two and a half. At that time, he did not even recognize me. Folks in this House have seen Jaden interact now, and he has interacted with many of them. However, back then, his main interaction with me was that he would come into a room where I was, grab me, and drag me through the house to the pantry. He would grab my arm and push it up to the pantry door, push my arm into the pantry to the shelf where he wanted to grab the crackers he could not reach, and then pull me out and pull my arm down, like his own personal robot. He would grab the crackers he wanted, put them back in my hand, push my arm back up, back into the pantry, and then push me away. He did this as a two-and-a-half-year-old or three-year-old. I had served his purpose as his personal robot. He had his crackers. He would go back to playing with his pots and pans, lining them up, stacking them up, obsessed with them for hours, sometimes. He would take breaks to watch Barney videos or The Sound of Music, which he watched about 300 times. I liked The Sound of Music the first 100 times. I still like it now. Anyway, that was life with Jaden.
The early intervention completely changed his mind. It started with putting a spoon on the table and getting him to give us the spoon. It was to have him recognize what a thing was and, hand over hand, have him hand us the spoon. We would then celebrate it by clapping and giving him a Smartie as a reward. Over and over again, we would do this one thing, and then eventually, it was a spoon and a fork or something else. This continued and got better. We started to help him build social interactions and recognize other things over the course of that time. Some of Jenae's earliest memories, as someone three and a half years younger, were, when she was two, learning English by watching Jaden do his early intervention and sometimes doing it with him.
There is video of Jenae with a car and a big stuffed Zoe, and Jenae loves Zoe. She would say, “Jaden, give me Zoe”, and Jaden would give her Zoe. That is the way she learned language, by interacting with Jaden over the course of time. That is really important.
As Jaden got older, he went to school, and we had to deal with trying to get him a full-time aid. Jaden has a photographic memory. Jaden knows where the swimming pool is, and he loves swimming, but he does not understand traffic at all. Even at 21, he does not understand traffic. We have to work with him to navigate that. He could leave the school and know where the swimming pool was, but it would be very dangerous for him, so we had to have someone with him at all times. That took a bit of education with the school system.
Jaden now, at 21, is in a program at the Centre for Autism Services of Alberta. It is called Quest for Independence. He went to school until last year, but now he is sort of transitioning. The goal, of course, is to get him into a vocation of some sort, but that is a challenge. It is a challenge across the country getting people who have gone through the school system into a vocation of some sort and into the training they need. There is also the mitigation of some of the challenges they might have, depending on where they are on the spectrum, navigating a job interview and that kind of process, which is very abstract for people with autism.
Of course, the question we then have is what happens as Jaden gets older. Right now we have an agreement that Jaden will live with one or the other of us, and we are good with that. However, there is going to come a time, and this is the hardest question for every parent of a child with autism, or any developmental disability in this country, when we are not there anymore. My hope is that we have built a society in this country that is so supportive of people who are different, people who need some level of support, that we need not fear that and we have built an environment that goes beyond family.
Jaden has only one sibling. Jenae cannot be expected to take care of Jaden for the rest of his life. Certainly she knows that she is his only sibling and is prepared for whatever responsibility she has as his sister, and she loves him very much, but we need to build a support system around that for families.
That brings us to the Canadian autism partnership. There has been a history to get here, working with the Canadian Autism Spectrum Disorders Alliance, CASDA, and stakeholders from across the country. There had been a call for a national autism strategy for many years. We got to a point where we started asking the stakeholders what they actually want. What is it they are looking for? Many of the things the autism community is looking for are provincial in nature. They are provincially delivered, such as education, health care, and social services, and the provinces are responsible for them.
In 2014, we saw that there was a role to play in vocations, so in budget 2014, Jim Flaherty, at the time, put in place funding for a CommunityWorks program and a program called Ready, Willing & Able, two programs to help people with autism in the vocational world. In budget 2015, we worked with CASDA and other stakeholders to ask for the Canadian autism partnership, and as mentioned earlier, $2 million over two years was given to a working group to establish that partnership, with a clear indication, at the time, that the partnership would be funded once this expert working group had done its work, along with the other stakeholders and self-advocates.
They did incredible work. They worked for years on that. They submitted their business plan and then asked the government of the day, this past fall, for $19 million over five years, or $3.8 million a year. As I mentioned in this House yesterday, $3.8 million a year is one dime per Canadian. It is a dime per Canadian for a Canadian autism partnership.
I have to say that there was an expectation that this was a no-brainer and that it would be funded for sure. How could one not support an evidence-based business plan, put together by stakeholders from across the country, that would help hundreds of thousands of Canadians as vulnerable as those living with autism? Inexplicably, it was not in budget 2017. It was rejected.
Now we have moved forward, and we are asking that it be funded anyway, that the government find a way to find that dime per Canadian to help Canadians living with autism. We have come to this point where we have an opposition day, a full day in this House, dedicated to a single question. It is not like a budget, where there are a whole bunch of other things thrown into the mix. We are just going to debate this one idea of a Canadian autism partnership. In the end, probably a couple of weeks from now, we will vote on it. Every single member in this House will vote on this. It is an important opportunity.
John Wooden, a famous NCAA basketball coach, has one of my favourite quotes. He said, “You can't live a perfect day without doing something for someone who will never be able to repay you.” That is a fantastic quote and is applicable in some way today.
For the members, and Canadians who might be watching this, if we do something for people with autism, they will be able to repay us. That is the point. People with autism and other developmental disabilities are capable of way more than we give them credit for, but we have to invest in them, just like we invest in everyone else in our society. We have to believe in them. Sometimes it means we have to work a little harder to understand some of the challenges, like the difficulty dealing with the abstract. Why is 85% on the spectrum not employed? Let us work hard to understand that and to figure out how we get the opportunity to benefit from those skills and abilities.
If people have just met Jaden and he gives them a high five, it is really easy to underestimate him. However, if they see him working in the library, putting books away, it is astonishing how much he is capable of. He will be putting books away. He will have them all in order and will be running around the library putting the books where they belong, never making a mistake. However, as Jaden is running around the library, if he sees a book that has been put in the wrong spot, he will grab it without skipping a beat and put it in the right spot. He sees the world differently, but he will not be able to use those skills if we do not pay attention to them, if we do not hard wire our society to look for that. The Canadian autism partnership is all about that.
The Canadian autism partnership recognizes jurisdiction and brings experts together from across the country to deal with families with autism. Then it advises governments in the jurisdictions. It might take a look at something like early intervention or diagnosis. Right now In Quebec, families are facing a two-year wait for diagnosis and then a two-year wait for treatment. Their kids are two years old. They know they have autism, yet they cannot get them diagnosed until they are four and they cannot get the evidence-based treatment they need until they are six. Families are mortgaging their houses to get this evidence-based treatment.
The Canadian autism partnership would work with the Government of Quebec and show it what evidence shows will work. It would be a trusted adviser with the Government of Quebec, or any other government. Multiple governments across the country are having difficulty in various areas. Education, housing, transition to employment, all of those things are challenging. The Canadian autism partnership would bring the best information from across the country and around the world and ensure it would be distributed in a way that policy could be executed right now so we would not have to wait for this.
As I wrap up, I will use one more quote. JFK said, “things don’t happen, they are made to happen”. That is where we are right now.
For folks in the autism community who might be watching this right now, or anyone else who has heard what I have said and understands its importance, we need to act. I believed, and I think stakeholders believed this as well, that budget 2017 would contain the funding for the the Canadian autism partnership. It seemed like a no-brainer at the time. However, it did not.
Quite honestly, when I stood and asked my question in the House of Commons yesterday, I believed that maybe at this point, knowing the motion was coming, the minister might stand and say that the government had thought about it, that it had made a mistake, and that had decided it would to do it. That did not happen.
I firmly believe that if Canadians speak up and make their voices heard, through the global citizen action, directly to their members of Parliament, when the vote comes on this in a couple of weeks, members of the House will vote the right way. People from all parties get elected because they want to make a difference in the lives of people. This is a clear motion, a clear opportunity to make a difference in the lives of hundreds of thousands of Canadians.
I want to thank members of Parliament for hearing me out on this. I look forward to the debate today. If people watching have any questions, or want to take part, my Facebook and Twitter handle are “MikeLakeMP”. Pinned to the top is the global citizen action. I ask them to take action and help our elected officials make the right decision.