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Autism Awareness Week

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About this Item
Subjects -  Handicapped and Disabled; Children
Speakers - Judge Ms Virginia; Skinner Mrs Jillian; Gadiel Ms Tanya
Business - Matter of Public Importance


    AUTISM AWARENESS WEEK
Page: 8719


    Matter of Public Importance

    Ms VIRGINIA JUDGE (Strathfield) [4.25 p.m.]: I ask the House to note as a matter of public importance Autism Awareness Week.

    Every hour has 60 minutes when you have a child with autism.

    They are the words of Adrian Ford, the Chief Executive Officer of the Autism Association of New South Wales, who agreed to have a chat with me on the weekend about autism spectrum disorders. Adrian is a member of the Autism Council of Australia. He has been involved with many organisations that deal with mental illness, including the New South Wales Child Protection Council and the Association of Children's Welfare Agencies. As he has such a distinguished career in caring for people with mental illnesses and disorders, one would assume he has a profound understanding of the effect of autism spectrum disorder on individuals, their families and the broader community. He has met enough parents of autistic children to know how it feels to be conscious of every minute of every hour.

    With many illnesses, once the damage has been done the hurt begins to heal. If you break a leg or an arm it can be set in plaster and, following physiotherapy, you can then get back to normal. If you are unfortunate enough to suffer a stroke, perhaps the effects of the stroke can be treated and you might regain some of your lost abilities following physiotherapy and other forms of rehabilitation. However, the only cure for autism is a lifetime of care. Autism affects about one in 100 Australians: 433,000 people feel its effects. Mr Ford described the complete devastation parents often feel when they discover that their child is autistic. A substantial part of the devastation is lack of understanding of what autism means for the child, the family, the uncles, the aunts, the grandparents, the teachers and the broader community.

    The community has many misconceptions about the exact nature of autism. Some people confuse autism with schizophrenia, dyslexia and other illnesses. Autism is an abbreviated term for autism spectrum disorders, which typically affects the three areas of social interaction, communication and behaviour. Sadly, many people do not realise that people with autism spectrum disorders can experience a wide variety and degree of symptoms. Many people with autism may also suffer from an intellectual disability. However, a small group of people with autism have average or above-average intelligence. Members of this group may have a specific area of interest in which they excel beyond average. These are referred to as splinter skills.

    All honourable members would be familiar with the movie Rain Man, in which Dustin Hoffman exhibited extraordinary savant-type skills in mathematics. Most children who have autism spectrum disorders are born with the condition, but it is not easy to identify autism before a child is two years of age. However, parents instinctively know that something is wrong. Some parents think that their child has a hearing disorder because the child does not respond when they try to communicate. In the early stages of a child's life we communicate not only by using oral and aural skills—tone and metaphors, et cetera—but also by visual cues, such as the raising of an eyebrow and the way we move our bodies. But children with autism relate literally so that metaphors have no meaning to them.

    It is vital that the condition be diagnosed as early as possible to allow effective intervention treatment of the condition through special education, speech therapy, occupational therapy and behavioural intervention. The success that can be achieved by early intervention was demonstrated by a young man who attended this Parliament last week. Jarrod Moore's autism was diagnosed early and he was able to attend an Autism Association school in preparation for attendance at a mainstream school. His success through the program was so profound that he is now proudly studying chemical engineering at the University of New South Wales.

    Sadly, Autism Awareness Week is about not only celebrating the achievements of people such as young Jarrod but also acknowledging the strain that families of autistic children may feel if they are not properly supported. Imagine for example the stress and strain placed upon a family that is already disadvantaged and has an autistic child—perhaps a family that struggles with substance abuse, domestic abuse, poverty or a non-English-speaking background, as is the case in the Strathfield electorate, where 60 per cent of families have one parent who was born overseas. How much more difficult would it be for a child with autism to find the constant attention and nurturing and support that he or she requires when the family is perhaps already dysfunctional or already experiencing stress or turmoil? The strain upon families who devote themselves entirely to their autistic children is already immense. I have three daughters and I cannot imagine for one moment how difficult life could be if only one of them had a disability, such as an autism spectrum disorder to which I have referred.

    It is common for children with autism spectrum disorders to be highly sensitive to bright lights, sharp sounds or other commonly occurring sensory experiences that I, my family members or anyone else would not even pay attention to or notice. Parents sometimes struggle to realise why their autistic child is becoming so upset. Mr Ford from the Autism Association related a story of one family with an autistic child who frequently became upset whenever he went anywhere in a car. The story illustrates several aspects of autism. First, it is understandable that many parents would despair because, despite their best efforts, it can sometimes be impossible to understand why a child seems to be isolated, how they feel, or why they may be unhappy. The parents of any child would feel like that, but those faced with the problem several times a day may view the strain particularly keenly.

    Mr Ford's story also shows the completely original way in which people with autism approach the world. We should not regret diversity of thought and experience. There is undeniable beauty in every new mind. But to appreciate this beauty and its originality, parents must be given the support of the community and be able to trust that others will take the time to know and understand people with autism. Helping people with autism to understand and relate to the world around them may indeed be a complex process that takes many years as well as the support of many people. One of the programs that children with autism go through relates to their comprehension of everyday activities. Most autistic children learn, not through listening or reading, but through looking, as I mentioned earlier. The teachers use visual guides to assist the children to understand the process of simple tasks through pictures that break the activity down into many component parts. For example, for us, it is a simple exercise to teach our children to brush their teeth, but for autistic children the activity has to be broken down into its finer components.

    Processes and techniques have not been discovered overnight but, rather, have been developed over many years through patience, commitment and kindness. The organisations that have devoted themselves to understanding autistic children and helping their families and communities understand them better are incredible assets to our society. The work of the Autism Association of New South Wales and organisations like it worldwide make priceless contributions to our neighbourhoods and communities. The heart of Labor Party ideology is that, given the opportunity, we should reach out to everyone so that together, in collaboration, we can build a successful society. Only then will we build a truly civil society—a civilised society, one that respects the inherent dignity of each of us with all of our special differences.

    A successful society is measured by how it treats and nurtures those who have a so-called disorder or who are underprivileged—in this case, someone who, sadly, has an autism spectrum disorder. During Autism Awareness Week we celebrate the work of autism support groups and awareness organisations as well as the achievements of those who commit their lives to understanding people with autism. We also commend the bravery of people with autism—children, young adults and older people—who live with the disability every minute of the day and who are determined to achieve their goals. They add to the rich and wonderful fibre of our community.

    Mrs JILLIAN SKINNER (North Shore) [4.35 p.m.]: It was a great privilege to attend the launch of Autism Awareness Week in the Parliamentary Theatrette, but it was somewhat disappointing that only two members of Parliament were present, given that all were invited. For many years I have taken a great deal of interest in autism. A close friend of mine has an autistic child. Many years ago, long before I was elected to Parliament, I visited the Vern Barnett School for Children with Autism at Belrose, which is run by the Autism Association. I was absolutely amazed at the wonderful work being done at the school and the fantastic achievements of the school in the interests of developing very young students who were fortunate to be attending. The good works of the school are evident when one considers the achievements of the young adults and older people who have participated in community life since leaving the school.

    A number of matters were raised at the launch of Autism Awareness Week. The chairman of the board of the Autism Association, Peter Werner, identified that there are 43,000 people with autism spectrum disorder in New South Wales: 3,300 of those are aged from zero to five years, while 7,700 are of school age. Out of every 93 children who are born with autism spectrum disorder, 55 will require significant assistance for most of their lives. Autism is more prevalent in males than females and affects one in 100 families, hence the theme of Autism Awareness Week—"One in 100". One young man who addressed the forum, Jarrod Moore, was an absolutely wonderful speaker. He was featured in a story in the Daily Telegraph on 7 May, which was the day after the forum. Unfortunately, the article does not capture the energy and wonderful achievements of that young man. Jarrod, who is now 18, had the good fortune to attend an Autism Association school as a young child.

    It is evident that he has the most amazing parents, who never accepted anything other than that he would go on to a university. It was through their support, the support of friends and the support of his teacher, who was alongside him when he addressed the forum, that he achieved university enrolment. After attending the Autism Association's school, he attended mainstream schools and was dux of his high school. He went to a selective school and is now enrolled in first year chemical engineering.

    Mr Frank Sartor: I did chemical engineering.

    Mrs JILLIAN SKINNER: It is a wonderful course. Many years ago my sister was the first female graduate in chemical engineering from the University of Melbourne. Obviously, this course suits Jarrod very well and is of particular interest to him. During his speech he mentioned some of the things that have made a difference. A point that came across clearly was the non-judgemental nature of computers. He was asked what had helped him most and his response was "A computer", because it never answered back and was never disparaging when he had to ask a question 20 times before he could get the right answer. His speech was truly a highlight of the launch of Autism Awareness Week.

    The director of education research for the association, Trevor Clarke, pointed out during his speech that there is an increasing demand for services for people with autism because better diagnosis is currently available. Thirty-five years ago a partnership was formed between the Autism Association and the Department of Education and Training. As I mentioned earlier, many years ago I visited the association's first school at Belrose. There is also a satellite program that began under the Coalition Government in 1992 as well as 38 classes, 22 of which are held in the government schools and 16 in Catholic schools. The University of Canberra recently commenced a specialist teachers course. Mr Clark pointed out that there still exists an urgent need for research into the causes of autism, as well as intervention and services associated with the disability.

    I was pleased to learn that the University of Sydney, Westmead Hospital and the Autism Association have conducted their first research project. Since this matter was listed on today's agenda, a number of honourable members have spoken to me about issues raised with them, to which I will now refer. For quite some time the honourable member for Wagga Wagga has lodged petitions in relation to autism in this House on behalf of local residents. He has received a letter from the Minister for Education and Training in response to those petitions. Sadly, the letter does not really say much except to reiterate the general information one could find on any government web site about programs. The letter does not address the specific issues raised by the honourable member for Wagga Wagga.

    I will spend some time on those issues because correspondence was sent to the Minister through the honourable member for Wagga Wagga. The correspondence requested the Department of Education and Training to act immediately to provide an autism support class in the Wagga Wagga area so that children could access the specialist education required to assist them to overcome learning difficulties. A letter, signed by a number of parents, was sent to the honourable member for Wagga Wagga, a number of other people and the department. The letter states:

    Statistics from Kurrajong Early Intervention Service in Wagga support the view that there is an increase in the incidence in autism in the Wagga Wagga region. They report a five fold increase over a five year periods which is in line with national statistics ...

    Unfortunately the nature of the assessment—

    that is, the assessment of how well the children can perform—

    is such that a single "score" determines the eligibility of the individual for placement in the NSW Education Department schools. This "single score" approach typically results in the autistic child being allocated to a "mainstream" class at their local or zoned school.

    In the "mainstream" class the teacher has to cater for the needs of the overall class and usually has little knowledge of the specific issues facing children affected by autism.

    In this situation, the needs of the individual becomes suppressed due to the requirement to cater for the needs of the majority. Additional stress is placed on the classroom teacher and the child with Autism becomes a behaviour problem. The consequence is that little learning takes place.

    We have investigated the availability of specialist education facilities in the region. Whilst the NSW Education Department makes available the "Emotionally Disturbed (ED)" class, this class is only available on a "session" basis. That is, the child can only attend the class for particular sessions during the day and must return to the "base" school for the rest of the time. This means that the child is given appropriate attention only during a relatively restricted period of the day …

    That matter is still outstanding. The honourable member for Wakehurst also raised autism with me. He has handed me copies of correspondence from Mr Iain Glover, who contacted him after writing to the Department of Ageing, Disability and Home Care some time ago in relation to his autistic child. The response from the department, dated 5 December 2003, is very much a bureaucratic letter, in that it spells out the various government provisions but it does not really answer the questions put directly to it. In response to the request for a review of services for children with autism, the letter stated that inquiries by the Legislative Council's Standing Committee on Social Issues provided advice and guidance on improving services to people with a disability. Mr Glover's letter in response stated:

    With regards to the content of this letter, I feel that the letter itself, has been written to another Bureaucrat and not to the parents of autistic children …
    The letter referred to the 18-month waiting list for services and stated that he waited 12 months to receive speech therapy and 18 months to receive occupational therapy from the department. He concluded his letter by stating:

    I trust that my letter and others will prompt the government to provide:

    1) more funding for the Autistic spectrum,
    2) more qualified Professionals & Therapists for the Autistic Spectrum
    3) an inquiry to identify the needs of Autistic children and the services required.

    Last week at the launch of Autism Awareness Week in the Parliament House Theatrette Trevor Clarke, the Director of Education and Research at the Autism Association, outlined the urgent need for more research into the causes of autism, as well intervention and services. I urge the Government to take his recommendations on board.

    Ms TANYA GADIEL (Parramatta) [4.45 p.m.]: I thank the honourable member for Strathfield for bringing this important matter to the attention of the New South Wales Parliament. I am pleased to speak in further support of Autism Awareness Week. The Government funds a wide range of services for children with autism and their families through the health and disability service systems. Those services include early childhood intervention, therapy, behaviour intervention and counselling programs. The Government provides more than $2.3 million in recurrent funding to the Autism Association of New South Wales to support the provision of accommodation and community integration services, behaviour intervention and family support counsellors. That funding also allows the Autism Association to act as a central resource for families seeking information and advice about autism spectrum disorder.

    The Department of Ageing, Disability and Home Care [DADHC] funds a range of other services that are available to children with autism and their families. With autism, as with many other forms of disability, early intervention is important to effectively support families. In recognition of that fact, the Government provides more than $12 million per annum to support the delivery of early childhood intervention services for children aged 0 to 6 years. The funding provides for services such as early childhood special education, therapy, information and referral, and assistance for children to be integrated into other specialist and mainstream services in each local area such as preschools, schools and respite services. More than 80 non-government organisations across the State receive funding for early childhood intervention services.

    The DADHC provides approximately $6.6 million a year for therapy services, in addition to the range of services provided by the department's community access stream. Each year $1 million is allocated for early intervention and family disability support services to assist families who have a child or young person between 6 and 18 years of age with a disability. Six services have been funded so far. The allocation will be expanded by $4.2 million, bringing the total to $5.2 million a year in four years. I am sure that that will please the honourable member for North Shore. The services include individual planning and service co-ordination, sibling and parental support, and support in accessing mainstream community activities.

    Children with autism and their families are able to benefit also from the Government's increased commitment to the Behaviour Intervention Service, a statewide service provided by DADHC. This service provides specialist advice and treatment to address behaviour issues. The service receives more than $3 million per annum, following an increase of $2.8 million in 2002-03. Funding will increase further over the next four years. The expansion of funding for the Behaviour Intervention Service includes the development of a specialist children's team, which will better support families of children with autism and other diagnosed disabilities. DADHC has created additional behaviour support co-ordinators in each region to provide support and expertise to services in the area of behaviour management. Another key area of support for families of children with autism is respite care. In 2003-04 the total investment in respite services through DADHC will be $122.5 million. The Government has recognised increasing demand for respite services by allocating an additional $11.2 million over the next four years for the provision of flexible respite for young people with a disability and their carers, including $1.6 million in 2003-04.

    These initiatives sit within the Government's broader commitment to improve support to families through programs such as Families Support. Access to appropriate support is an important concern for families of children with autism. These Government initiatives will have a significant impact on access to support, which is vital. A facility in the Parramatta electorate assists children with autism. I have listened to parents talk about how the help that they receive is a source of great comfort. Sometimes that support is what keeps them going. It is appropriate that, in Autism Awareness Week, I place on the record our thanks to the wonderful people who assist children with autism and their parents. They do a great job.

    Ms VIRGINIA JUDGE (Strathfield) [4.50 p.m.], in reply: I thank all honourable members who contributed to debate on this matter of public importance for their thoughtful comments. In particular, I thank the honourable member for Parramatta for her thorough and compassionate speech about autism spectrum disorders. All honourable members should remember that Autism Awareness Week is about supporting people with autism, their families and their communities. Children and young adults with autism spectrum disorders need and deserve our patience. They can be helped to achieve their potential only through long-term support and understanding.

    Earlier the honourable member for North Shore referred to a good article in the Sunday papers about Jarrod and his family. I am glad she agrees with what I said. Jarrod said that he was not upset about the judgmental attitude of people towards him; he was more upset about their lack of patience. When he was developing his skills one of the tools that he used was a computer. The program that he used involved matching one shape with an identical shape on the computer screen. Apparently he was tireless in his attempts to master that program. He tried, time and again, to place a circle on top of a square. It was a difficult task but he did not become frustrated. Every time he tried to match a circle with a square, the computer displayed the words, "Please try again."

    We must be patient with people who suffer from this disorder. A calm response helped Jarrod to cope with a difficult process. Many autistic children respond best to patience. They should not be struck or punished when they fail to complete a task such as matching a square on a computer screen. If they are they become cynical and it makes it difficult for care workers to help them. Autistic children need our full-time care and support. The honourable member for North Shore referred also to collaboration. I agree with the honourable member: There has been collaboration with the Department of Ageing, Disability and Home Care, the Department of Education and Training, and the Autism Association of New South Wales.

    In 2003 the Carr Government allocated $6.3 million to the Department of Education and Training to support people with autism. This Government, which is committed to assisting people with autism, is prepared to put its money where its policies are. That enormous contribution was used to fund supervised classes, textbooks and intervention programs. I acknowledge this Government's outstanding commitment to that issue. We always need additional resources to deal with those who suffer various disabilities or disorders. The Government is aware of that and it is working closely with relevant organisations.

    The honourable member for North Shore referred also to Trevor Clarke and to the tremendous amount of work he has done. I am advised that he has established that between 30 and 40 per cent of people with autism spectrum disorders display interesting splinter skills. Quite a high percentage of people with autism have extraordinary abilities in the area of mathematics, music and numerology. When dealing with young people who have this disorder we should remember that they have specialist skills. I commend the hundreds of unpaid volunteers who are members of the association. They do that work because they are passionate about helping and supporting one another and they want to give these young people the best possible chance in life. They are to be commended for their dedication, selflessness and compassion.

    Discussion concluded.


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