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Autism/ASD has made a sudden appearance in both houses of the Australian Parliament. It has been raised by members of four different parties. May 5: Senator STOTT DESPOJA (South Australia, Dem) 5 May, 2003 Senator STOTT DESPOJA (South Australia)
http://parlinfoweb.aph.gov.au/piweb/view_document.aspx?id=869325&table=HANSARDS That the Senate—
Question agreed to. 14 May, 2003 02 June,2003 Mrs HULL (Riverina) (5.01 p.m.) —Today I rise in the House to congratulate Andrew Brien and his organising team for a very successful conference on autism that was held here in the ACT yesterday at the National Convention Centre. This is the first time a conference such as this has been held outside a major city. It enabled parents, practitioners and departmental people to share information and to network. It gave parents the opportunity to just share with somebody who understands. It also gave them the opportunity to access factual information that is reliable and is able to be acted upon. It was also great to see some of the departmental people in attendance, particularly those from Family and Community Services, in order that they could understand the confronting issue of autism. I attended the conference for a very short time but, whilst I was sitting there, I happened to be in the segment with the dads of autistic children. I was absolutely in awe of those fathers—who were there to openly and honestly discuss the issues—and in awe of the courage that it took to come forth with honesty on their children's behalf. That was inspiring to me. The cause of autism is not known. There are many theories about it. There does not appear to be a single cause, but it is now thought that in a number of cases there may be some sort of genetic component. What is true is that the style of parenting does not cause autism. The latest research indicates that about one person in 100 has an autism spectrum disorder ranging from very mild to profoundly impaired. The way that each person is affected and the extent of that effect differ between individuals. That is why autism is sometimes so very difficult to understand and to manage. Autism is lifelong. There is no cure, although with early diagnosis and intervention, appropriate therapies and educational programs, you can make significant progress. Yesterday we heard of the milestones children had reached, making significant progress in their lives. People had thought that a child might never speak; now the child is reading fluently. Under so-called normal circumstances, we might take it for granted that a child may be able to just get on and ride a bike without trainer wheels. Once this milestone is achieved in an autistic child, it is as though he has climbed Mount Everest. One person commented that when Hillary climbed Mount Everest it was groundbreaking, but that every day there is an achievement in the life of an autistic child it is a milestone for them and their parents. At the conference, I heard of issues associated with the difficulties that families face in their role as parents and the way in which they are confronted with personal situations. Dealing with autism can impact on a family's lifestyle and their ability to hang together as a family. One area of concern is that, in some areas, it is reported that about 80 per cent of families go through a marriage break up due to the inability of one or both partners to cope with the very trying and restrictive case management issues involved. As a child grows older, impairments that he or she may have had usually diminish with appropriate therapy and educational intervention. However, the impairments will always exist to some extent. A person with autism will always need some form of assistance, depending upon their level of disability. People with autism vary enormously in terms of their personalities, intelligence levels, skills, behaviour, ability to interact with others and ability to participate in the world around. At the conference it was clearly pointed out that, should you have an external and physical disability and your behaviour is not so-called `acceptable behaviour' in the community's eyes, it is acceptable. It is acceptable if a child has a physical look that may suggest that there is something wrong with the temperament or the health of that child. Because autistic children are generally perfect looking little children and have no appearance of any kind of disability, society does not expect them to behave in the way that they sometimes cannot help behaving. It is less acceptable for them. Yesterday, I heard issues raised by dads saying that in some areas they had been confronted with people saying, `Either you smack that child or I'll smack that child.' They are some of the difficulties that some of these families are confronting. Other obvious difficulties are that it is very hard for families to keep relationships going with their friends. If your child is not behaving in what we call a socially acceptable way, it is very hard for people to understand—it is very hard for people who are not absolutely committed to the care of an autistic child to cope with it. People with autism have significant difficulties in communicating with other people. The type and extent of the difficulties varies widely. While I was at the conference yesterday I realised that not every autistic child excels in maths or is a genius in some other area such as we might see depicted on television or movie screens. The fact is that their difficulties vary widely. They generally have difficulty in expressing themselves and in understanding what other people say and mean, especially when referring to more abstract concepts. While some autistic people can speak fairly well, other sufferers may have a very limited ability to speak despite having normal intelligence as measured by non-verbal tests. Learning at school may be limited unless the type and extent of the communication difficulties are identified and there are precise strategies put in place tailored to the specific needs of that child to help him or her understand instructions and move forward in a learning capacity. Regarding social skills, people with autism or Asperger's syndrome have significant difficulties in forming relationships with other people. Of course this is a terribly tiring and demanding role for the parents. As I said, I cannot help but come back to the commitment of those parents—it is absolutely outstanding that about 180 people attended the conference. Autistic people struggle to understand social rules governing relationships and interactions—rules that everyone else takes for granted as normalcy. As a result, they can be unresponsive to, or reject, attempts by others to interact with them. This leaves families totally isolated and, indeed, the isolation can also impact on the sufferer of autism. If there is no adult help given, an autistic child remains isolated from all people. Other children give up trying to initiate interactions and play, both in the classroom and in the playground. I am aware that that is sometimes confusing for children who attempt to undertake friendships with autistic children. These little children cannot understand the divergence of attitudes of an autistic child, so they find they question themselves and are upset with their relationship with their friend and not able to understand it. It does not just impact on the families; it impacts on the friends of those autistic children and their families as well. People with autism have very inflexible behaviour and a very restricted range of interests and activities. They like to follow exact daily routines and they may be highly attached to seemingly ordinary objects, such as stones, and insist that these always be carried with them. Sometimes it is hard for the general public to understand these issues. I would like to point out that autism is a disorder. Yes, autism can be improved with early intervention, but it is a lifelong illness. It requires the understanding of governments, the understanding of departments—(Time expired) 4 June 2003 Hansard Page 15445 One of the children affected by this freeze is William Vu. William is two years old and is autistic. His parents, my constituents Son Vu and Thuy Cai, both work full time just to make ends meet. Earlier this year, the Vu family faced the possibility of William not being able to remain in child care. His centre was not adequately staffed to cater for William's special needs and had the capacity to care for William only until 2.30 p.m. each day. The purpose of the Special Needs Subsidy Scheme is to provide funding for trained staff who can assist children like William. Yet, despite an application lodged four months ago, William and his parents are still waiting. In desperation, his parents were forced to change William to another child-care centre in order to ensure that they could continue to work and to pay their bills. There are currently 1,500 disabled children on the waiting list—that is, 1,500 children very much like William Vu. Intervention is very important for this age group. It can mean a difference in quality of life for an individual. This is not something that we can blithely disregard, this is not something that is a matter of ideology; this is a matter of looking after the poor and most vulnerable in our community. What does a freeze on the Special Needs Subsidy Scheme quite clearly say to those parents? What does that say about this government's priorities with respect to some of the most disadvantaged members of our community? We are about providing hope to the community, not despair. This government has delivered despair through its freeze in funding to the Special Needs Subsidy Scheme. This year's budget managed to allocate 1,200 extra places over the next four years. Let us look at what will happen. By the time two-year-old William will get a supported child-care place, he will be in primary school. William, his parents and thousands of other families have been abandoned. This is a terrible decision. The 2003 budget, which should have provided hope and assistance to children, has provided bitter disappointment. The Commonwealth does not provide adequate funding to the states for such services and facilities. As a consequence, specialist preschools for kids with disabilities are few and far between. Studies in Australia, the United Kingdom and the United States indicate that the prevalence rate of children with an autism spectrum disorder lies between one in 100 and one in 250, with one child in 160 to 200 having an autism spectrum disorder to such an extent that targeted intervention is required. However, with early detection and early intervention, children with autism make substantial gains, thereby reducing whole-of-life costs. So, even if we wanted to look at this from a rationalist perspective, targeted early intervention and assistance schemes would reduce the costs to the community. Most autistic children receive little or no intervention, which is heartbreaking when one considers that studies in the United Kingdom have shown that these children can experience significant developmental gains with only 10 hours per week in an autism specific preschool class. The annual cost to Australia incurred by autism—if one can possibly estimate that—is estimated to be in excess of $1.3 billion. Early intervention can reduce whole-of-life costs by two-thirds. So, even if we have to debase ourselves by having an economic argument about those who are the most disadvantaged in the community, we are saying that early, targeted intervention—something like 10 hours per week—will reduce that $1.3 billion whole-of-life cost by two-thirds. If the Prime Minister were serious about pushing his supposed early childhood agenda, he would immediately act to implement the early intervention programs which children like William need and deserve. Not only would a funded early intervention program act to improve the quality of life of these children, but also in the long term it would save the government a significant amount of money. |
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