44th Parl. 1st Sess.
December 1, 2022 10:00AM
As members know, I do not speak with the authority of someone who has autism. I do not speak with the authority of a scientist and the folks who do unbelievable work, many of them right here in Canada, leading the world in the science around autism. I speak as a father of an incredible young man, very familiar to people this place, named Jaden, who was 10 years old when I was first elected, and last month he turned 27. He is an energetic young man who brightens up this place when he runs around giving people high-fives, as he is so happy and excited to meet folks.
I will probably share a little more from the heart, but I will start with the technical details and touch on what the bill would do.
As was mentioned in the introduction, this is a proposed act respecting a federal framework on autism spectrum disorder, and I am not going to get into every aspect of it. The bill is just over two pages long, French and English, so it is not super long. Importantly, it leads off with a statement that “The Minister of Health must develop a federal framework on autism spectrum disorder.” It then lays out the measures to be provided, which folks can take a look at on the Internet and see the bill there.
Its real strength, I think, is in its accountability mechanisms, and towards the end it talks about the minister. It says, “Within 18 months after the day on which this Act receives royal assent, the Minister of Health must cause to be tabled in both Houses of Parliament a report setting out the federal framework on autism spectrum disorder developed under section 2.”
Further to that, later on it says:
4 (1) Within five years after the day on which the report referred to in section 3 is tabled in Parliament, the Minister of Health must cause to be tabled in each House of Parliament a report that sets out
(a) the measures from the federal framework that have been implemented and their effectiveness in supporting autistic persons, their families and their caregivers; and
(b) with respect to any measure included in the federal framework that was not implemented, the reason it has not been implemented and the timeline for its implementation.
I think there is a really strong accountability framework.
For anybody who has been working in this area over the years, there is a real impatience right now. It has been many years that we have been talking about a national strategy. However, here we are today, and I think it is an opportunity to move forward, with some of that impatience, yes, but with real hope for the future for people with autism in this country and the people who care about people with autism.
My other hope is that, in addition to whatever strategy the government comes forward with, and there is indication that the government will be coming forward with a strategy maybe even ahead of the timeline outlined in this bill, it will be both substantial and organic. I think part of the problem over the years is that we have been waiting for perfection, waiting for every box to be checked. Therefore, we have had delay after delay. We have to recognize that we are never going to have unanimity, but there is a lot of common ground. If we work together towards that common ground, we will be able to make some progress. Then, through constant consultation with autistic Canadians, scientists and the broader community of families and caregivers, we can make whatever it is that we come up with stronger and stronger all the time.
I have a few thanks to give that are worth mentioning.
First, this bill did come from the Senate, where it was supported unanimously but largely led by Senator Housakos and Senator Boehm. I offer a huge thanks of appreciation to Senator Housakos and Senator Boehm. Also, I would be remiss if I did not thank Senator Jim Munson, now retired from the Senate, who led the charge on this for years and years.
I also want to thank colleagues from all sides of the House. I have been so fortunate over the years as we have worked on these things to have support from my own colleagues. As well, today, this bill is seconded by a Liberal colleague, whom I have had the chance to work with in his previous life when he was on the provincial side of things, more behind the scenes, trying to find some common ground when we could. My experience is that we have had so many people contributing in that way.
I thank everyone who has contributed to Jaden's life: his sister Jenae, his mom Debi, his grandmothers Helen and my mom Bonnie and her husband Dale, and all of the people who have surrounded him over the years.
I am going to turn to the second half of my speech, where that common ground, in my experience, lies. It is pretty straightforward. As we have conversations with people across the country and around the world, there are some really common areas where there is a lot of work that needs to be done and is critical to achieving the best outcomes for autistic people. That is diagnosis and early help. Some people say early intervention or early therapy, whatever it might be, but a good common ground word would be help for people. There is education, employment, housing. The sixth thing that is a little more vague but we all are concerned about is this idea of what happens when we, as parents, are gone. Are we going to have people around our loved ones who are going to care for them like we cared for them? That is a critical question.
Two of the things that I have kind of focused on or learned as I have gone down this path, both through my experience with Jaden and in talking to lots of other stakeholders, particularly autistic people themselves, are the ideas of inclusion and autonomy and what those things mean. If I think about autonomy for Jaden, it is a bit tricky because Jaden has real difficulty with abstract things like danger. Jaden could not have full autonomy because he might run into a street. He loves dogs. He might see a dog and run across the street to grab the dog by the side of its cheeks and pull its face into his face so he can smell the dog's breath, feel the dog licking his face and he would not even be aware of traffic as he is running. There are all sorts of danger awareness issues.
I like to think about maximum autonomy. With Jaden, when I think about maximum autonomy, I think about the fact that too often we are impatient, trying to figure out what he wants or presuming we know what he wants. We do not take the time to really listen to him. What I have learned over time and my advice to loved ones of people with autism is to really try to get down to their level, in a sense. We should not force them into our world, but get down in their world and really take the time to try to understand what they are trying to say.
When Jaden grabs my face and says, “Ba, ba, ba, ba, ba, ba” super intently, he is trying to tell me something, and it is incumbent on me, as someone who cares for him, to try to understand what he is trying to tell me. That may be through his body language, his facial expressions. Sometimes his skin tone is a little different. Sometimes he is paying attention to and looking at something that is bothering him, like we forgot to grab something that is important to him, such as his iPhone or something like that. He is always trying to communicate something. It is incumbent on us to try to find out what that is if we are going to maximize people's autonomy.
I will talk about inclusion. I talked about maximizing autonomy for Jaden, but we talk about inclusion as well. Full inclusion is a really tricky concept. Not every fully inclusive situation is perfect in every scenario for every single person, but that goes for us as well. There may be things that we do not prefer or ways that we prefer things to be that are not the same as everybody else wants.
As we look at inclusion, I think about inclusion in Jaden's case. Jaden was included in a regular classroom, but he was not included in the same way as every other kid by himself in that classroom. He had an assistant with him. It is a bit different, a modification to help him mitigate some of the challenges he had, but he was in a regular classroom from kindergarten to grade 12.
That regular classroom really served him well. He surprised a lot of people. He had kids around him who really saw what he was good at and because they paid attention to what he was good at, they had a chance to realize that oftentimes his abilities surprised them. They were beyond what they might have thought. They had a chance to get to know him because they were in his classroom, and they challenged him.
For him, that was being included in a musical theatre production in grade 10. He was first in a group scene in grade 10, but then he again outperformed expectations, so in grade 11 they gave him a few more scenes. They put him in some sort of dance routines and things like that and taught him to do those things.
Then in grade 12 they did another performance, and one of the girls in the class asked if Jaden could be her partner, her husband, in Joseph and the Amazing Technicolor Dreamcoat. She modified all of the routines to make it look like he was doing exactly what everyone else was doing. That is what inclusion looks like. That is what maximum inclusion looks like. It is people getting to know people and then challenging them. It is embracing their skills and abilities and helping them with their challenges, just like all of us need in this place.
We have so many people who are here to help us in that regard. Not all of us can draft perfect policies, so we have people working in the House of Commons who help us with that from time to time. There are all sorts of those things. We have translators who translate, because not all of us are perfectly bilingual. We are all challenged with something. For people with autism, it is no different from that.
I am going to close by telling a story I tell at the end of my presentations. I do presentations around the world about how we define normal.
About 10 years ago, we had a chance to do an interview. My daughter was 13 at the time and Jaden was about 17, and we had this chance to do an interview with Steve Paikin. Anyone who has done an interview with Steve Paikin, and there are a few of those people in this world, know he can ask some tough questions sometimes. He gave Jenae a heads-up that he would ask her a tough question in the interview, but he had not given her a heads-up as to what it was going to be. He asked her if she sometimes wished her brother was “normal”, like every other kid. He said, “quote, unquote”. He knows Jaden and he knows Jenae as we had done interviews with him before.
Jenae, without skipping a beat, at 13 years old said, “Well, honestly, since Jaden was diagnosed with autism before I was born, I don't exactly know what a normal brother is like, so Jaden kind of is my normal, having autism.” Steve pressed her and asked, “Do you like him just the way he is?” She responded, “Honestly, if Jaden didn't have autism or was, like, cured or something, he wouldn't be the same as Jaden is now.” At 13 years old, as a sister, she said that.
When I am talking to students and am talking about this in front of 500 introduction to psychology students, or whatever the case is, I will point out that in Jenae's case, she did not have a choice. She was born into the family and Jaden was already there, so her normal was kind of set out for her. However, the school they went to from K to 12 had a choice, and it chose to include Jaden in the classroom.
At the time, we thought that was better for Jaden, but every single kid he graduated with, every single kid who was in that school with him, would say their life was immeasurably better because Jaden was included in their class. They learned so much. When they move forward in their lives, the diversity of knowledge they have is so different.
I often like to think of my life and my normal and how we define it. It is almost like, and bear with me here, a video game character. Think of a video game character and imagine a circle as long as we can see, and that is our video game character, and we walk around and experience things in that bubble. Sometimes that is what our life is like. I am 53 years old. My life is like 53 years of walking around in that bubble. Sometimes a TV screen or a computer monitor comes into that world and shows me something from the outside, but that is my normal.
If that circle only included people just like me, first of all, my weaknesses would be the same as other people's weaknesses, so nobody would be there to compensate. Also, my strengths would not be strengths because everybody would have the same strengths. Our world, our normal, is better when we are surrounded by people who come from different backgrounds and who have different experiences. To the extent that we grasp that and include all Canadians in our experiences, our workplaces, housing, education systems and in everything else, we are all going to be better off for it.
I look forward to hopefully passing this bill and creating this better world for all Canadians.
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Madam Speaker, I want to thank the member for his ongoing advocacy for autistic Canadians. I really appreciated his comments.
I was hoping he could expand on two points that he touched on briefly. One is how we ensure this piece of legislation adheres to the principle of “nothing about us without us”. The second is the need for tangible investments to improve the services and supports for autistic Canadians, families, service providers and caregivers.
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