44th Parl. 1st Sess.
December 1, 2022 10:00AM
, seconded by the member for Don Valley East, moved that Bill S-203, An Act respecting a federal framework on autism spectrum disorder, be read the second time and referred to a committee.
He said: Madam Speaker, it is an absolute pleasure to stand here to discuss Bill S-203, which came to us from the Senate. It was unanimously passed by the Senate before it got to us here.
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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, the bill lays out a time frame of 18 months for a report. Hopefully, we are going to move this bill forward faster than would normally be scheduled. I am hoping debate will collapse tonight and we will be able to save some time to get it to committee and then move forward even faster.
As for a timeline, my hope, and she can probably play a role in this as a member of the Liberal caucus, is to encourage the government to move forward with a national strategy, which I know is being worked on right now, as quickly as we can, so we can put all of this energy to work with this collaborative vibe we have going on in the House right now to benefit these folks who really, really can use the help.
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Madam Speaker, I totally understand the jurisdictional issues that sometimes the members of the Bloc have to grapple with, but I have had great conversations with colleagues from my hon. friend's party. We look forward to getting it to committee and hearing from experts from across the country.
The whole point of a national strategy is that we benefit from the very best evidence, from the very best experiences that folks are having not only across the country, but around the world. In a sense, we inhale that information and use it to our benefit. Then, as we gather that information, we can almost exhale it to the community for its benefit. It is almost like breathing. We constantly, with every breath, get stronger and better. That is what we want to do, and getting it to committee is a huge part of that process.
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Madam Speaker, I am loving these questions from all sides. They are hitting the nail on the head. They indicate there is a real understanding of what needs to happen.
The “nothing about us without us” conversation is something that I think we continue to get better at, but we have a long way to go. It is a challenge. There is a segment of the autistic population that is able to clearly communicate what it is like to have autism. There are other people on the autism spectrum in Canada for whom it is a bit more difficult to communicate, but I think that we are all learning that we have a long way to go to include those voices.
I have one more quick comment on that. What is very important is that we make sure we are including indigenous Canadians with autism in that conversation as well, because I think they have been under-represented in many of the conversations over time.
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Madam Speaker, I will say this. As I have travelled the world and talked to people, we are doing better in Canada and North America than in many parts of the world. We have a lot to offer in terms of knowledge and we have a lot to learn in terms of knowledge, but if we get this right, we can export the knowledge that we have to other parts of the world, sharing and having conversations about how we make life better for everyone. I think this is a real opportunity for us to take a leadership role at a global level on inclusion.
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Madam Speaker, what a fantastic 45 minutes that was. This is a rare time in the House, because often things are pretty combative in here. I am reminded tonight, as we think about what we are doing here, of words from JFK: Things do not happen. Things are made to happen.
I am so thankful for two senators who did not take for granted that the government is moving toward a national autism strategy. It has signalled as much, and these two senators, and the entire Senate by extension, did not take that for granted. It has been a long time, and a lot of us on all sides have worked on this for a long time. We are not going to wait for it to happen. We are going to work to make it happen together.
Today was a real example of that. It was a coming together of members from across the House. A few folks mentioned things they might change a bit when the bill gets to committee, whatever the case may be, which is the way it should be. However, let us find a common ground. Let us debate how we can make it stronger. Let us move forward.
One other thing I am thinking of relates to this. When I am talking to university students, I often talk about political labels and how helpful they are. We have the Liberals, the Conservatives, the NDP, the Greens and the Bloc in here. However, let us remember the fact that political labels are constructs. As helpful as they might be for the functioning of our democracy, we are human beings before we are political labels.
As we were having our conversation tonight, it felt more like we were human beings having a conversation about how we can make our country better. We set aside the political labels for a night because we agree on something. Sometimes that is okay if we largely agree on something.
That also extends, I would say, to the labels that science puts on us, as with autism. Autism is a label, if we think about it. There are a lot of labels we use that might be helpful for organizing, understanding or whatever the case may be, but we have to remember that we are human beings first.
I talked about help, and so often it is easy to think about legislation like this as legislation designed to help people. I just want to remind everybody in this place, as we have the conversation, that a big part of getting this right is understanding that we are going to benefit from it. As a society, we are stronger when we are using all of our strengths, all of our skills and all of our abilities. A huge part of what we are doing here tonight is creating an environment where we are operating on all cylinders and using all of our strengths and abilities. There are too many people who have the strengths and abilities we really need in this country whom we are not using to their full capacity because they are simply not included to the extent they ought to be.
I will close by thanking everybody who took part tonight and those who stuck around to support us. We really look forward to having a fantastic conversation at committee and getting this legislation passed through the House as soon as we can so that we can take the steps we need to take to realize the full potential of our country and include everybody.
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- Dec/1/22 6:35:25 p.m.
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Madam Speaker, I request that it be carried on division.
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