Mr. Speaker, I do not profess to be an expert on many things and I certainly am not an expert on autism, but I would profess to being an expert on being a parent of a child with autism. I have a 14-year-old son, named Jaden, who has autism. He was diagnosed 11.5 years ago with autism. I am not going to get into the numbers and the definitions. I will let others do that and it is a very important part of the debate here. Instead, I want to talk about why autism awareness is so important and why the bill is so important.
Before I do that though, I will recognize a few people. I would like to recognize Senator Munson for putting forward this important bill and the work that he has done in terms of raising autism awareness. I would definitely like to recognize our Minister of Health who, on April 2, declared that from now on each April 2 will be known as World Autism Awareness Day in Canada.
I would like to recognize colleagues from all parties who have shown an interest in my son and asked me many questions about autism, and have come to me for advice in terms of dealing with constituents who approach them on this issue. Most of all, of course, I would like to thank Jaden and recognize my son for all that he means to me. I would also like to take the opportunity to recognize my wife, Debi, and my daughter, Jenae, for the work that they do in holding down the fort at home while I am here working on behalf of my constituents.
Why is autism awareness so important? There are many reasons. First, because early diagnosis is critical. In the past decade, we have seen that knowledge about autism and related disorders has increased tremendously. We have seen that more early diagnosis, treatment and support at those early stages is absolutely essential. We need not only parents to be aware but for doctors and the public at large to be aware of this disorder, what it looks like and recognize it early.
In our experience, when Jaden was 18 months old, we remember taking him to the doctor to express some concerns about the fact that he was not talking and there some other behaviours that we noticed. At that point, just over a decade ago, even the doctor who looked at him said, “Oh, he's a boy and some boys talk late”. We have heard similar stories from many parents who eventually had diagnoses of autism.
It was actually a cousin of ours who mentioned, when Jaden was about 21 months old, that maybe he had autism, that some characteristics looked familiar. The cousin knew someone with autism and thought maybe that was the case. That was the first time it was brought up to us.
Thankfully, at two years, we did recognize that Jaden had autism and at two-and-a-half he was actually officially diagnosed at the Glenrose Hospital in Edmonton, and we were able to start treatment. Many of the people who have spoken to the bill have talked about the importance of that early treatment and quality treatment. We were able to get that treatment and Jaden's pediatrician several years later commented that Jaden was an entirely different kid because of the treatment he received at those early ages.
Another reason why the bill is important, why autism awareness is important, and probably the most important reason in our view is because families need support. I am not just talking about the support of the medical community. There has been talk of the treatment challenges across the country, but I am talking about support in terms of understanding, the things we do not see. When families are dealing with autism, oftentimes we do not see that 24/7 stress they are under. We do not see the knife jammed in the door jamb at night because they are concerned that their child might decide to go swimming and it is mapped out in his or her head where the swimming pool is and he or she knows how to get there, but the child has no concept of danger, traffic, or nighttime. If the child decides to go swimming, he or she might just go swimming.
We do not see the times that the child wakes up in the middle of the night. In our experience, it was often about five or six times a night that Jaden would wake up and we would be alerted by a bang on the door. Jaden was nonverbal so he communicated by saying “bah bah bah” before he threw himself on the bed in the middle of the night. This would happen five or six times over the course of the night. I am not sure how the translators will translate “bah bah bah”, but now we are down to two or three times in the night that he often wakes up, but there is this stress that is caused in terms of lack of sleep and the need to be on high alert all the time for the child's safety because the child does not understand or recognize danger the way other kids do all day long.
One time we had an incident. We were at a friend's house who had a swimming pool. Jaden was about five or six years old and he stepped out onto the tarp of the swimming pool. He did not really understand that the tarp was not solid and he tried to walk out on top of it. He loves swimming, so there will be lots of swimming stories here.
Then there are the things that the public does see but does not necessarily understand. My colleague, who previously spoke, talked about kids throwing themselves down onto the floor in the middle of a grocery store. These are six- or seven-year-old kids who look like every other kid, but throwing a temper tantrum in the grocery store can be very hard for parents.
There was a situation in Edmonton not that long ago, about a year and a half ago, where a child threw a tantrum and was squealing and making a lot of noise in a restaurant. The restaurant manager came to them and asked them to leave because they were being disruptive, not understanding that the child had autism or not understanding what that was.
There is another funny story actually with Jaden, just to kind of illustrate the sort of lack of filters, in terms of conduct, or lack of barriers. When Jaden was about eight years old, we went to a McDonald's in the West Edmonton Mall between Christmas and New Year's. The place was jam-packed. There were about 50 people in line and about 20 people buzzing around behind the counter, working. It was probably one of the busiest McDonald's I have ever seen. We were picking up food for a bunch of other people, but it was Jaden and I in the restaurant. We got to the front and got our food. I was walking out with my hands full so I could not hold Jaden's hand like I normally would. We got about halfway out of the restaurant and all of a sudden Jaden got a big smile on his face, started giggling, turned around and ran, keeping in mind he was seven years old, behind the counter, all the way across behind the counter, with all these people starting at him, reached into the bin where they held crushed Smarties, grabbed a handful of crushed Smarties and shoved them into his mouth. He had Smarties all over his face and the biggest smile, as everybody stood aghast at this scene that they had just witnessed of this pretty normal looking seven-year-old running behind and filling his face full of Smarties.
However, not all the stories are so funny. It is very difficult, for example, for kids with autism to express more abstract feelings. We had one situation around that same time where Jaden had got hurt. He had actually fallen down the stairs. He came upstairs and his head had been cut pretty badly and he was bleeding pretty badly. We had no idea what had actually happened. All we knew was that his head was bleeding badly, but he could not explain, he could not articulate. Even though he can talk on a computer or write things down, it is hard for him to express things that are more abstract. As parents, we can imagine how difficult that is when our children might be suffering from something like the flu or a sore stomach or something like that, and they cannot possibly explain what it is that is causing the pain they have.
These are things that parents of kids with autism deal with every day.
I have not even spoken about the challenges that parents of adults with autism face, wondering what is going to happen to that child of theirs when they are not there any more to take care of them, and how heartbreaking that is. It is something that we think about, even at this stage in our lives, fairly regularly.
I want to talk a bit about the people who go above and beyond, the people who get autism awareness, who express that awareness. I want to thank people who take their time to, in our case, encourage Jaden to get involved in things. He has been involved in hockey. A coach of a tae kwon do class started a class for kids with autism. Even though he did not have any family members, he recognized the potential there. There are cooking classes and things like bowling. Different things where community leaders have had their eyes opened and been made aware of the potential for kids to get involved.
I also want to quickly talk about the opportunity for people with autism to contribute. In Jaden's case, at his school, they have found ways to have him work in the library, putting books away, which is something that he absolutely loves to do and is incredible at.
I see my time is getting very short. I could talk for hours about the need for autism awareness and thank the people who have contributed and enriched our lives. I will close with this. I want to recognize and thank all of the people out there with autism spectrum disorders, the family members and friends who live with this disorder every single minute of every single day. God bless them.
