Mr. Speaker, my adopted kids were born healthy, but early in their lives their families noticed that their personalities were different from those of other babies of the same age. They hit milestones later and they increasingly showed little awareness of the outside world. Their words became fewer and they banged or chewed their toys, rather than playing with them. Tantrums were common, and others were quick to judge them when, for example, the child flapped his or her arms or shoved a nearby adult who had ventured too near. Even birthday parties or grocery shopping could be distorted by outbursts of anger and frustration.
Eventually the parents received the diagnosis of autism spectrum disorder, which is often made harder by a lack of understanding of those around them.
Most parents are concerned with whether their children will be engineers, lawyers or teachers, and whether their children will find happiness and marry. My adopted kids' parents faced the very real questions of whether their children would lead independent lives or not, and who would look after them when they, the parents, were no longer around.
Autism spectrum disorder, or ASD, is a neurological condition that causes a range of developmental disabilities. Some people can function well, while others are locked in a world of their own.
Today ASD occurs in 1 in 165 children, representing an increase of 150% in the last six years, and there is no explanation for the dramatic increase. Worldwide more children are affected by autism than AIDS, diabetes and pediatric cancer. In Canada a total of 48,000 children and 144,000 adults have some form of ASD.
A child who shows a number of the following characteristics and behaviours would likely be diagnosed with autism: if he or she shows no interest in other people; does not know how to play with or talk to people; develops language and speech skills slowly, or not at all; can only initiate and maintain conversations with difficulty; and repeats ritualistic actions, such as rocking, spinning or staring.
A person with a mild case could go for years and may only be detected when he or she goes through a crisis that brings them into contact with professionals who are able to recognize the disorder.
There is no known cause, but research is focused on differences in brain function, environmental factors, genetics, immune responses and viral infections.
No single test will confirm that someone has ASD. Some people with mild forms of autism may never need treatment, as they may function well and even excel. However, those with severe forms of the disorder cannot function and may benefit from active therapy.
There are several ways that people with autism are treated. Applied behavioural analysis and intensive behavioural intervention are designed to actively engage the children with behavioural, communication, learning and socialization problems. Therapy can be extremely expensive, as it may involve one-on-one teaching for up to 40 hours per week, with costs ranging from $30,000 to $80,000 a year. Other therapy may include counselling, development of motor and language skills, diet and medication and physiotherapy.
It takes hard work, patience and sheer determination to help navigate the system and allow a child to emerge from the bonds of autism. The physical and psychological strain on a family can be overwhelming, and the isolation profound. I am therefore honoured to rise in the House to speak in support of Bill S-210, An Act respecting World Autism Awareness Day.
I would first like to thank the sponsor of the bill, Senator Munson, as well as my many colleagues in the House who have been supporting and advancing this cause. I also thank Senator Eggleton, who was the chair of the standing Senate committee that provided an extensive report on funding for autism, entitled “Pay now or Pay Later”.
Bill S-210 calls for Canada to join with member states of the United Nations to focus the world's attention on autism each April 2.
World Autism Awareness Day shines a bright light on autism as a growing global health crisis, and it is one of only three disease-specific United Nations days. It reflects the UN's deep concern about the prevalence and high rate of autism in children in all regions of the world, and the consequent development challenges for long-term health care, education, training and intervention programs, as well as its tremendous impact on children, their families, communities and societies.
This day also acknowledges the extraordinary talents of people living with autism, as well as their ongoing struggles and those of their caregivers, families and friends.
This bill will not change the reality of families affected by autism, people such as Jacob, Dee and Mary in my community. Jacob is a beautiful little boy with long eyelashes, who loves technology and is an accomplished photographer. His prizewinning picture of owls is front and centre on my desk at work. His mother, Dee, left her job to focus full-time on Jacob. She and Aunt Mary, an 82-year-old who is currently recovering from heart surgery, are his greatest advocates, but they still have to fight every day to get treatments and to make the sacrifices necessary to pay for those treatments.
This bill will increase Canadians' opportunities to learn about autism and to recognize that in their communities there are families living with ASD, people like our Jacob, who is a superstar.
Last year the United Nations hosted a rock concert by Rudely Interrupted, whose members have various disabilities, including ASD. The words of lead singer Rory Burnside were especially inspiring:
My advice to kids who have some form of disability is: don’t let it stop you. Use it as your strength; don’t use it as your weakness. One red light can lead to a whole bunch of green lights, with a few orange lights thrown in. And the red lights are just a bit of a test.
I have seen first-hand what caring people who work tirelessly can achieve. We must change the future for all those who struggle with ASD. That means each of us must fight hard for every Jacob in our community, and when roadblocks are put in front of families, we must work all the harder. We must fund research into the causes, prevention, treatment and cure for autism and raise public awareness about autism and its effects on individuals, families and societies.
In 2006, the United States' Combating Autism Act authorized nearly $1 billion in expenditures over five years to help families with autism. We must bring hope to all of those who deal with the hardships of this disorder and we must develop a national strategy on autism.
I am proud to share with you that we have formed an all-party subcommittee to address neurological disease and to bring researchers, stakeholders and decision-makers together on ASD, MS, ALS, Alzheimer's disease and Parkinson's disease, all of which are major neurological diseases that cross all ages.
One in three, or 10 million, Canadians will be affected by a neurological or psychiatric disease, disorder or injury at some point in their lives. NeuroScience Canada estimates that about $100 million at most is invested in operating costs for neuroscience research in Canada annually. This compares with a burden of disease in the order of $20 billion to $30 billion, a ratio of 200 to 1.
This past April, Yoko Ono unveiled Promise, a mural created especially for World Autism Awareness Day. It consisted of 67 pieces, representing the 67 million autism sufferers around the world. The pieces were to be broken apart and auctioned off individually. With each winning bid came the promise that when the cure for autism is finally found, all the pieces will be reassembled for a day. Promise, just like World Autism Awareness Day, symbolizes the coming together of society around people with autism and the unfinished work of the world in finding the causes and cure for the disorder.
Let us keep the promise. Autism speaks: it is time to listen.