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Motion 172: National Autism Strategy Tuesday, 28 November 2006

On November 27, 2006, Mike offered this statement on Motion 172, regarding a National Autism Strategy:

Mr. Speaker, I dedicate this speech to someone who has more impact on people than most of us could ever dream. As amazing as it may sound, he is an individual who does not have a mean bone in his body. He is incapable of hate. He is incredibly intelligent and never says anything he later regrets. He has taught me more about myself than I ever imagined there was to know, and he is only 11 years old. He is my son, Jaden, and he has autism.

Today I am not going to give the definition of autism. Members can look that up along with enough stats to make their heads spin. Instead, I want to share the story of our family's initial experiences and in my last few minutes relate them to the motion before us.

Before I do that, however, I want to commend the member for Fredericton for introducing a motion that goes beyond the political games we often see when we talk about autism in the House. His motion is actually designed to accomplish something for families and individuals affected by autism. I am thankful that we have been able to work together to come up with amended wording that we can all support.

To that end, I also want to thank the health minister and the parliamentary secretary for health for putting aside partisanship and finding common ground on which we can agree. I was particularly pleased to see the health minister begin to take action in the spirit behind this motion with his announcements last week.

Eleven years ago today I was 26 years old. I had been married for two and a half years and had a three week old baby boy. We named him Jaden, which means God has heard, something we did not know at the time, but which has tremendous meaning to us now. Jaden is almost completely non-verbal. He uses a special computer and sometimes a pen and paper to communicate.

However, going back to my three and a half week old son, like many new Canadian dads I had a clear vision for his future. It was certain that Jaden was destined for the NHL. I had it all planned out. I would not be a pushy father like Walter Gretzky. I would build a rink in my backyard upon which I would invent the most ingenious and fun drills that Jaden would enjoy for hours upon hours every day. When Jaden was not playing hockey, he would be studying hard to maintain his A-plus average.

As time went on during Jaden's first year or so, my wife Debi and I saw nothing to indicate that my carefully crafted plans were anything but on track. He was a very good baby and around the time he was one he seemed to be developing some typical first words, “dada, momma, bye-bye”.

Between 18 months and 2 years old Jaden started doing some pretty amazing things. Like just about every kid his age, he had one of those foam alphabets that fit inside a foam frame. One day on a whim Debi took the frame away and left him with just a jumbled pile of letters. Jaden proceeded to put the letters in order just as fast as we would do it the very first time.  Then to our amazement, a friend of ours mixed up the letters in a pile and put out the letter Z. Jaden, without missing a beat, put the letters in reverse order Z, Y, X, W, V and so on just as fast as he had done forward.

As amazing as things like this were, during his second year we started to notice some other things that caused us some concern regarding Jaden's development. He was extremely content playing on his own with little or no interest in playing with other kids or interacting with adults. His speech was not really developing beyond the first initial few sounds and he was very focused on patterns, often spending an inordinate amount of time lining up his videos or stacking cups in perfect order. He paid little attention when we tried to talk to him or play with him. We would have thought he had a hearing impairment except for the fact that if he heard a video he liked start up in another room at very low volume, he would instantly stop what he was doing and go to watch it.

Debi brought up our concerns to Jaden's pediatrician at his 18 month check-up, a very well regarded pediatrician. She did not see overly concerned and suggested that some children, especially boys, simply developed their speech later than others. Debi filled out speech assessment forms with public health and she and I started attending classes to learn how to help him work on his speech.

During the summer of 1997, when Jaden was about 21 months old, we were at a family wedding when one of my cousins mentioned autism as a possibility. Debi and I had both heard the term autism, but we knew very little as to what it meant. We assumed that if this was what he had, surely his doctor would have recognized it.

Three months later at Jaden's two year old check-up, his pediatrician finally brought up autism as a possibility and put us on a six month waiting list to see a specialist in Edmonton. Shortly afterwards, we came across a book that changed our lives forever. Let Me Hear Your Voice by Catherine Maurice. My mom received it from a friend. After reading just a few chapters, she called us to tell us we had to read it.  It is the story of a mother whose two children have autism and undergo a form of therapy that helped them to overcome it. We now know the therapy as applied behavioural analysis or ABA. Sometimes it is referred to as intense behavioural intervention, IBI, but they are the same thing. As we read her description of her own son as a toddler she could have been describing Jaden word for word. By the end of one evening with that book, we knew, with absolute certainty, that our son had autism. We had a pretty good idea what we needed to do about it. We just did not know yet how complicated and frustrating the steps were in between.

Beginning the next day, Debi started making phone calls throughout North America to find out more about ABA and what we needed to do to get started. We learned that the therapy was going to be expensive. Even then, we were looking at between $50,000 and $60,000 a year. At that time, I was making probably between $35,000 and $40,000, so the numbers did not add up.

We learned we needed to start as soon as possible, as the research showed the treatment had more effect the earlier it was started. We also learned there was a significant battle going on between parents of children with autism and provincial governments across the country over the funding of ABA therapy.

In 1997-98, in Alberta, the financial picture was not as rosy as it is today. As in other provinces, a dedicated group of parents had recently taken the Government of Alberta to court and won the right to have ABA funded. However, unlike other provinces, the Alberta government made a choice not to appeal the court decision, I believe, due to the conviction and leadership of a few key ministers. This must have been a difficult decision, given the dollars involved at the time, the questions surrounding ABA and the mystery of autism in general.

Despite these considerations, the province decided that autism and the families affected by it were a priority, and it has shown leadership in this area ever since.

Returning to Jaden, from November to April 1998 was a very frustrating time for us. We knew Jaden had autism, but we had to wait six months for an appointment to get the diagnosis, which we needed to access funding.

As for the funding, the practice of the government in those early months was to automatically reject everyone and then make them go through a rather stressful appeal process. Since we were not certain we would receive funding, we did what many parents across the country still do in the same situation today. We had no choice. We started making arrangements for the program and then lined up a loan to cover the costs.

Fortunately, at the same time that we were getting organized, the group of parents that had taken the government to court in the first place kept the pressure on. Shortly before our ABA program was set to start, we got word from Handicapped Children’s Services, in Alberta, that we would not have to go through our appeal and that we would be funded 95% of the cost of our approximately $60,000 program for the first year.

Time does not allow me to go into all the intricacies of Jaden's program. It has evolved over the years as the government in Alberta has fine-tuned the process. Parents no longer have to pay for a percentage of the program. Jaden's situation is now monitored by a multidisciplinary team on an annual basis to determine what his needs are and this helps to determine what the budget for his specific program will be. Since he is in school full time, his ABA time has been cut down significantly, to 10 hours to week from the 40 in the beginning. However, he receives some additional funding for things like occupational therapy and speech because of the multidisciplinary team approach.

Most important, there is no question in our minds that Jaden's life is better now because the province of Alberta made some courageous decisions almost a decade ago. The fact remains that where Alberta showed leadership and made autism treatment a priority, other provinces have not. That is why this motion is so important.

In my view, the preamble to the amended motion, which talks about a national strategy for ASD, is the most important part. It is obvious, for whatever reason, that the provinces are not taking appropriate action on this issue. To understand this, in part, one only needs to look at what has happened in Alberta over recent years. Because we have the programs in place, families have been moving there in droves to avoid taking out massive lines of credit or remortgaging their homes.

If, for example, P.E.I. were to decide to properly fund ABA without other maritime provinces doing the same, it would probably overwhelmed by the influx of families moving there from surrounding provinces to get the treatment. The same rationale could be applied across the country.

For this, and many other reasons, we need to approach the issue at the national level, with the federal government playing a key role in coordination and facilitation. Everything else that follows in the amended motion is placed in the context of that national strategy. The wording throughout the motion rightly refers to cooperation and consultation with the provincial and territorial governments, which is where the responsibility for the delivery of treatment, the main area of contention in recent years, lies.

The first clause refers to the development of evidence based standards for diagnosis and treatment. The diagnosis part of this hits home with me. In retrospect, I think Jaden could have been diagnosed as early as 18 months of age, almost 14 months before his program started.

As for evidence based treatment standards, I believe we are beyond the point where there is any debate that ABA works for most kids with ASD. However, we need to learn more about the long term effectiveness of the treatment, how and when to withdraw it when a child has reached the stage where he is “indistinguishable from his peers”, and whether there are better alternatives for some individuals, for example, adults with ASD.

In regard to the development of innovative funding methods for care, we have talked a lot about children and ABA. I want to point out that thousands of adults in Canada require some form of treatment as well. Any discussion of care and treatment must not forget them.

In terms of surveillance, there is some question as to whether autism is becoming more prevalent. We need to find out if this is the case or if we have become better at recognizing it. We also need to look at the question of whether autism is more prevalent in certain areas of the country and if so, why.

Finally, on the research end, Canada is doing some amazing things with genetic research in connection with autism. While parents rightfully demand more than just research, this area is crucial to a national strategy as we try to ensure that both levels of government get maximum value for money on an ongoing basis. 

I wish to reiterate my obvious support for this motion, as amended, and to give my thanks to all members who will be supporting it. What happened here today and what will happen when we vote on this is extremely important for my family and for all Canadian families who deal with autism every day of their lives. 

I look forward to working with our health minister and members from all parties in the House to make Canada's national autism strategy a reality.

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Mike Lake - Member of Parliament for Edmonton-Wetaskiwin