Mr. Speaker, it is a pleasure for me to speak about this particular issue. When the debate centres on health issues or a bill concerning a health issue, it is always a wonderful opportunity for me, as a nurse, to speak in the House on the subject. We must understand that, unfortunately, autism is a widespread and common condition, a grave condition not only for the person affected, but also for the family and friends of the individual. It is an illness that unfortunately has no cure.
It is a neurological disorder that affects millions of Canadian families, especially children. Autism affects how the brain works and results in behavioural disorders that are more or less severe, depending on the case, an inability to have normal social interactions and communication, and repetitive and very structured behaviours. Symptoms vary in severity from one person to the next and can change over time. There can be a small to moderate improvement depending on the behavioural therapy and assistance provided to the child from a young age, although the symptoms never go away.
It is estimated that 1 in 100 children is affected, which makes autism the most common neurological illness in children. It is more prevalent than childhood cancer, AIDS and diabetes combined. It is estimated that autism affects 35 million people around the world. In Canada, 48,000 children and 144,000 adults have autism. If we factor in family members, friends and people in the circle of those affected, the number of Canadians who have to cope with the consequences of this condition on a daily basis is very high.
At present, we do not know what causes autism, even though some factors or statistical congruences point to certain things. The research is focusing on certain genetic, biological and environmental factors. However, to date, researchers have been unable to determine the causes with certainty or ascertain whether there is a way to treat or prevent this condition. Thus, it truly is an important Canadian health issue and it should definitely be a major national concern.
The symptoms include the lack or absence of socialization and communication. This is manifested in trouble communicating and delayed development of language, which can be more or less serious depending on the severity of symptoms. It should be understood that autistic children are not like other children. Autistic children will not understand other children. They will not understand their interests. They will not understand their behaviour, their games. It is very difficult for autistic children to interact with other children because they do not understand them.
There are also other symptoms. In fact, these children can have severe crises, become agitated, go silent, and act in ways that are incomprehensible to everyone but themselves. It makes family and social life very difficult.
Here is a concrete example. When a 3 year-old child has a severe crisis and becomes violent, the parents are able to cope. However, when a young man of 16, weighing 250 pounds, has a crisis and his mother intervenes, it is much more serious. Parents sometimes get hurt. The child injures the parent, and the parent does not understand why. This has a major impact on families. I wanted to share this concrete example because I believe it is important to understand what parents go through.
There is another important point that needs to be made. Most children without autism—normal children, if I can call them that—do not understand autistic children or the way they behave. It is very hard for them to understand why the next door neighbour, their friend, behaves in a particular way. Consequently, most children are not inclined to socialize with autistic children. This is but another example of a breakdown in the autistic child’s ability to socialize, communicate and interact.
I have spoken about the implications of having an autistic child and how difficult it is for families to cope. Consequently, these families tend to isolate themselves.
Communication with the outside world is almost nonexistent because everything has to be managed to the nth degree. It involves constant care and the parents have a lot of trouble coping. Parents often tend to live in a little bubble. There is so much to do at home that they do not have time to see their friends, to unwind and to think of other things. Their life tends to revolve around the illness.
When the diagnosis is made, the family’s life changes forevermore. When the pediatrician, psychologist or psychiatrist assessing the child diagnoses her with autism, it is understood that the child will have to be looked after for the rest of her life. Even when the child reaches adulthood, she will still require help and support. A family member will have to provide care for the rest of the autistic person's life. This places a huge burden on families.
Let me give a concrete example. When a child starts yelling and flailing about at the supermarket, or when a parent wants to take a child shopping, or to a friend's place, or to see the doctor, and the child throws a tantrum, the parent does something about it. Usually, after one or two attempts—if the parents are capable—the situation is resolved and the child has understood. It is not like that with an autistic child. The crises are unpredictable, and it is impossible to know when they will occur. Moreover, they could occur anywhere.
No one within earshot understands what is going on, nor do they understand why the child is acting out. To outsiders, it seems that the parent of an autistic child has no control and no idea what to do with the child. It is extremely hard to cope with these kinds of situations. Every outing is an adventure and it is impossible to know how the child is going to behave. Everything must be planned to the nth degree. Playing things by ear is not an option; everything must be structured to ensure the best possible outcomes and the least negative consequences for the child. It is extremely hard to find that structure, hence parents' social isolation.
In most cases, when both parents work, life becomes virtually unmanageable. One parent has to stop working and look after the child because it is too big a task. It is no secret that looking after an autistic child requires very specific skills. Unfortunately, I do not think that caregivers are breaking down the doors to go and help the parents of autistic children, because it is really difficult.
The implications for parents, brothers and sisters include burnout, a feeling of isolation, and uncertainty about the future of the child. They have no idea whether the child will be capable of performing a particular task or if the child will one day enjoy some degree of autonomy. There is also a form of discrimination insofar as the other children do not receive the same attention. Things can get really tough, and some parents even commit suicide or attempt to do so. Looking after an autistic child is no mean feat.
This bill proposes a World Autism Awareness Day. No one will vote against the bill because it is a good piece of legislation. It must be passed. Even if the World Autism Awareness Day is instituted, we must go further and take action to encourage research, access to care, support, financial, psychological and family assistance, as well as education and work life skills for people living with autism.
I would ask people to not make do with simply passing this bill. We need to walk the talk and take serious steps to truly relieve what I believe is an excessive burden on families.
I call on my colleagues to support this bill and to follow up with action.