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House of Assembly - Fifty-First Parliament, Second Session (51-2)
2008-04-03 Daily Xml
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ASPERGER'S SYNDROME

The Hon. R.B. SUCH (Fisher) (11:30): I move:

That this house calls on the state and federal governments to ensure that people afflicted with autism, especially Asperger's syndrome or high-functioning autism, are adequately supported and assisted to lead productive and satisfying lives.

Many years ago, I think it is fair to say, most of us probably had not heard about autism but now, more and more, we hear of people who have autism in one form or another. I do not profess to be an expert in this field because I am not, and I am not sure whether the increased number of people who have autism is because of better diagnosis or whether there is an actual increase in the number of people who have it. I do not know, and I do not know that anyone else knows, either.

We do not know what causes autism but it includes a range of developmental conditions that are neurological and biological, and they have a significant impact on child development. Clearly, with the time I have, I cannot go into all the aspects of autism and the technical details, but often (and usually) the people who have it have difficulty in aspects of communication, social interaction and skill development. There is a range of abilities, although they are not always adequately described in terms of intelligence because some of the children with autism and particularly Asperger's syndrome may have a high, above average IQ. So it is not appropriate to suggest that if someone has autism they necessarily have a low IQ.

The more important aspect for me is whether those who have it, and their parents, are being assisted to deal with this very serious issue. I will not use the names of people who have provided me with material, but I asked some parents of children with autism to tell me and to put down in writing what it is like to have a child with autism. I will be able to quote only briefly from each of these very detailed responses. The first is from Justine, and her child has Asperger's syndrome, which is one of the disorders within the range of autism. These are her words:

A mother's perspective:

Constant doubting and questioning yourself and your parenting skills and reflecting on situations eg did I respond the right way, did I try hard enough, what could I have done differently, am I overreacting etc.

Becoming sad when your child is depressed and anxious and not coping with life, in particular school. Feeling frustrated and powerless when you don't know what the problem is and therefore you can't help them.

Worrying about what the future holds for your child and whether they will have a successful life.

Constantly under pressure to make quick decisions about how to react to difficult situations—when to overlook bad behaviour, when not to, how to best manage a situation and maintain control.

Always trying to anticipate 'triggers' that could start your child on an emotional 'meltdown'. Not being able to plan ahead due to not knowing how your child will react to everyday life events. Constantly having to be careful what you say to the child for fear of causing them to have an aggressive outburst—like 'walking on eggshells'.

Not being able to leave the child alone in a room for fear that they will hurt their sibling or themselves or break things. Feeling upset when the Asperger's child is violent towards their sibling.

Worrying about impact of the Asperger's child's behaviour on sibling behaviour and emotional wellbeing. Feeling powerless when their sibling needs attention but you can't provide it as all your time and energy is taken up looking after the Asperger's child. Worrying about the impact of the child's behaviour on the emotional wellbeing of other caregivers, for example, grandparents.

Being hurt by criticism from family (and others) and being blamed for the Asperger's child's poor behaviour. In particular, family gatherings/visits are stressful as the Asperger's child usually behaves badly and you feel that your parenting skills are being judged.

Feeling socially isolated and having difficulties maintaining friendships with other parents. Avoiding birthday parties, visits to friends or inviting other children to play at your house. Feeling 'stuck at home' due to less family outings, for example, going to the movies or out to dinner.

Difficulty having a much needed break from the Asperger's child due to the stress that it causes them and feeling guilty and worried when you are away from them.

That was the letter from Justine. Stephanie provided me with a very detailed response. Her letter states:

The first problem for parents with children suffering Autism is the constant need for us to be present in their school life. Most children with Asperger/High Functioning Autism or Classic Autism have limited or no organisational skills, they are not street smart and find learning and retaining any rules very difficult. Their Sensory Issues, their lack of Social skills and their lack of being able to self regulate causes them to be picked on at school. This causes them anxiety, depression, gastro issues and Melt Downs that occur regularly. Our kids don't cope in standard schools and they exhibit tantrum like responses to things they can't cope with.

I have seen children with Autism being subjected to after school care and Self-Harming (beating their heads or throwing themselves to the ground). Most of these children are not capable of making it through their school years without at least one parent or relative acting as a personal assistant and counsellor. This equates to one full time and one part time at best income in most of these families.

Centrelink are not sympathetic to these families and insist that the child is now six or seven and both parents should be working. The parent being forced back to work knowing their children aren't going to cope equates to anxiety, depression and a whole range of extra problems. The need to take a lot of time off means that no employer wants to keep us on or rely on us.

Stephanie goes on in her very detailed response, reinforcing the earlier points from Justine. The next letter is from Tracey, and it states:

As a preschool support worker and a mother of a six year old boy with autism I am writing to address my current concerns in both the preschool and school settings. What follows are possible strategies to address the current lack of skills, support and information within our local community.

1. Response team at district level covering preschool to year 12. Either DECS or Autism SA to cover extra caseload...and allow quicker response to resolve issues in educational and home settings.

2 Education to all [school] staff from top down on autism, strategies and behaviours.

3. Quiet/withdrawal areas in all settings to cater for those needing fewer peers during breaks and social skill development opportunity in smaller group settings.

4. Respite or care facilities for special needs children in small groups at a range of times including after school for parents and to assist those families involved in home schooling.

5. Strategies to reduce assessment waiting times. Currently 12 months.

6. Support time offered for those in need of occupational therapy support/sensory integration which impacts on their ability to participate in their home and educational settings.

7. Provision of a public occupational therapy service from early years/childcare upwards.

8. Information kits to be issued when children with autism [are involved in school]. To include brochures for parents, resources for staff etc.

9. Early detection training for care providers to assist in referral process or support.

10. Review of support levels to include children with needs awaiting a diagnosis.

11. Quicker access to social skills and behaviour management training for staff and parents.

There is good news in relation to Justine's letter. Her boy is about seven, I believe, and he used to be suspended from school frequently, if not daily. His medication has now been changed, and Justine told me recently that, in many ways, he is a different boy altogether.

The issue remains as how best to help these children and their parents. I must commend the current federal government for keeping the commitment made by the Howard government to provide $170 million Australia-wide to assist children with autism, and their parents. It sounds like a lot of money but it is, no doubt, spread over a few years and amongst 21 million people (in particular, those who have autism, and their parents) and probably does not add up to a lot of money per household.

We have other services. The member for Morialta was involved with Autism SA and, no doubt, she knows more about this topic than I do. There are organisations which can be supportive and I know the school systems are trying to deal with what is a very serious issue.

The package that I referred to was announced on 3 October 2007 by the then prime minister John Howard. It was a $190 million (I think I previously said $170 million) Helping Children With Autism package. The Rudd government says it will honour that commitment and that is to be applauded.

However, the reason for raising this issue here today is not because the parents or the children themselves seek or need sympathy. What they need are support measures which will help them lead productive and satisfying lives. I have a nephew who has a lad with autism and, if the parents persevere and if they get appropriate help, then many of these children can be assisted in ways to cope with the affliction they have.

I mentioned earlier that, years ago, probably the diagnosis was not as accurate as it is today. I point out that, in relation to Asperger's syndrome (which is, not surprisingly, named after Dr Hans Asperger) it was identified 50 years ago. However, many people who had autism in the past would have been put in places like Minda. Some members may have come across lads with autism (and, to a lesser extent, girls, where it is not so common) who have incredible mathematical capabilities. If you tell them what year you were born and a little bit of other information, they can tell you what day of the week it was that you were born on, because some of them have an amazing ability to do mathematical-type calculations.

I think one of our recent university whiz-kids in relation to maths, who came from the southern suburbs (it is certainly not confidential information but I will not use his name), I understand, had autism as a child and, yet, has an incredible mathematical ability.

The reason, as I say, for raising this issue here is not to get sympathy, not to have people feeling other than what they should—a degree of compassion for the parents and for the children—but to try to ensure that, as a community, we recognise the serious burden that is experienced by these children and their parents. Whilst governments are doing much, I think it is important for all members to be aware of this affliction and to ensure that, as far as possible, we can provide the support services and bring some comfort to the lives of these people.

I have seen, through someone that I have dealings with on a day-to-day basis (and I will not identify the person), the experience this person has to go through and the daily, I suppose, torture in having to deal with this very serious problem. I commend the motion to the house and ask members to give it their support.

Ms SIMMONS (Morialta) (11:45): I am pleased to support this motion on behalf of the government. As the member for Fisher mentioned, and as others may be aware, I spent a number of years as the chief executive officer of the Autism Association in this state. I also acknowledge the member for Fisher's long-time interest in this area and particularly his brother, John Such, who, as a specialist teacher and principal of a special school (now retired), demonstrated great skill and empathy with the children in his care.

To introduce some background to the issue, autism is a pervasive developmental disorder first described in 1940. Autism is one of the autism spectrum disorders, which also includes Asperger's syndrome. These disorders are characterised by difficulties in communication, social behaviour and repetitive or restricted interest in activities, as described by several of the parents who have contacted the member for Fisher.

Although 75 per cent of people with autism also have an intellectual disability, it also occurs in people with average and above average IQs. There is no known cause, although research shows that genetic, biochemical, neurological and viral problems during pregnancy and birth may be implicated in its development. Prevalence is about six in every 1,000 live births. It cannot be cured, but early diagnosis followed by a structured program that addresses each individual's needs will assist those with the disorder to lead a meaningful and productive life.

Communication impairment in autism is very complex. Most people with autism have a language disorder and do not communicate easily; some do not speak at all. Social behaviour, development and social understanding are impaired. Individuals also have sensory difficulties that prevent them from understanding their environment. They often overreact to sensory input, causing them to become overwhelmed, which results in anxiety and panic and what are often termed 'challenging behaviours'.

As we have heard from the member for Fisher, having a child with autism or Asperger's syndrome can have a significant effect on the whole family. Bringing up these children places enormous pressure and strain on parents, brothers and sisters. Social activities for the whole family, even ordinary social outings such as shopping or walking down the street, can become extremely difficult.

This state government and the current Minister for Disability (Jay Weatherill) have been very diligent in raising their awareness of this difficult subject and have responded accordingly, and I congratulate them (wearing my previous hat) on the number of times they have asked me for advice and clarification on issues relating to this complicated syndrome.

In September 2007, we announced a major expansion of early intervention services for children with ASD, with an investment of $4 million over four years. This extra money was aimed at halving the waiting list for an existing and very successful early intervention program at Flinders University, as well as expanding services for families in the country, who have consistently found it extremely difficult to access early intervention services immediately after diagnosis.

This money has been distributed in close consultation with the major agencies delivering services, with Autism SA (as it is now called) receiving $450,000 extra each year; Flinders University's early intervention program, $100,000 each year; and Disability SA, a further $450,000. The total state government funding to Autism SA in 2007-08 is $1.9 million.

Children with ASD also receive additional support services through the education portfolio. In December 2006, DECS introduced revised categories for eligibility to the disability support program, which is something the Autism Association had been asking for for some time, with autistic disorder/Asperger's disorder becoming its own disability category.

In South Australia, most students with disabilities attend mainstream schools. However, in the last three years, the government has spent more than $17.6 million on improving facilities at our special schools, units and classes. There are seven new inclusive preschool facilities for students with special needs which have been introduced; a new state-of-the-art school will be built for the Regency Special School; and a new campus will be built for the Gepps Cross Special School. This year there is also an additional five new special classes located at Smithfield Plains, Braeview, Hallett Cove, Mount Gambier North and Gawler High School.

Since being elected in 2003, the Rann government has invested more than $73 million to boost funding support to help students with extra needs. After consultation with the sector, this money has been used as follows: an additional investment of $25 million into an early years literacy development program as part of a four-year commitment of $35 million, of which much of the funding is being directed to students with learning difficulties, many with ASD.

There is also an extra $3.5 million over four years for the Access Assistant Program, to support students with severe multiple disabilities so that they are able to attend their local school. A further $2.4 million for additional speech pathology services as part of a four-year commitment of $3.2 million was asked for by parents of children with ASD in particular. There has also been the commitment of additional funding of $3 million for early years learning difficulties support.

As well as delivering services via DECS staff, the education portfolio will provide an additional $4,157,000 to non-government agencies in 2008. In SA about 200 children with ASD receive early intervention services, and approximately 710 receive school support services. Children with a dual diagnosis of autism and a physical disability also receive services through the Novita Children's Services.

As for the new federal Labor government, it is currently working with parents, experts and carers to determine the most effective operational arrangements to meet the services announced during the recent election campaign. Members may remember that federal Labor pledged to establish specialised child care and early intervention services. The final service models will take into account existing childcare subsidies, including the childcare benefit and the childcare tax rebate.

In conclusion, the government is pleased to support the member for Fisher's motion to ensure that those people affected with autism, especially Asperger's syndrome or high functioning autism, are adequately supported and assisted to lead productive and satisfying lives.

Mr HANNA (Mitchell) (11:53): I rise to speak briefly in support of this motion brought to the parliament by Dr Bob Such, the member for Fisher. He is asking the House of Assembly to call on the state and federal governments to ensure that those people afflicted with autism, especially Asperger's syndrome or high functioning autism, are adequately supported and assisted. Well, I wholeheartedly agree, and I have learned about autism only through being in this job and coming across constituents, or their families, where this condition occurs.

There are several issues that have been brought to my attention by local families. The importance of early diagnosis has already been referred to; that is extremely important to allow both the parents and schools to cope with some of the behaviour that often arises when a person has autism or, in particular, Asperger's syndrome.

Secondly, there are real issues within our state schools. There is always the dilemma of how far one should go to incorporate a person with behavioural difficulties arising from something like autism into a mainstream classroom and how far they should be segregated because those behaviours can be disruptive. It causes a real dilemma for teachers. It is a balancing of the rights between a person with autism to get a comprehensive education and the rights of those other students who also have to learn in the same classroom.

One other aspect I refer to briefly is the issue of respite care for the parents of children with Asperger's. Sometimes these children can be a real handful—sometimes they require watching virtually 24 hours a day—and it is so important for parents to have the option of having their child cared for while they can take a bit of a break, because it can be very, very wearing. I have had discussions with people in the education department, and I think I have even raised the issue I have raised today with the minister for education at some point along the way.

The seriousness of the condition and the problems I have mentioned cannot be underestimated. I know that with one of my local families it ended up resulting in the death of the young person; for whatever reason, this young fellow with this condition could not go on. The difficulty with which families grapple on a daily basis, if they have this condition to deal with in one of their children, is not to be underestimated.

I hope that this message will go through to the people in authority and that we can have even better programs and more understanding about autism, and Asperger's in particular.

The Hon. R.B. SUCH (Fisher) (11:57): I do not need to canvass the points already made. I thank the member for Morialta, the government and the member for Mitchell for supporting this motion, and I am sure members of the opposition will also support it.

The member for Morialta mentioned my brother, John, who was principal of Ashford Special School for many, many years and, prior to that, Woodville Special School, and also he worked at Minda. Our family are normally very modest and do not talk about what they do, but it is people like him who have made a great contribution, and the dedication of people working with children with autism who have helped relieve the burden somewhat that is imposed on the parents of those children and who help to give the children themselves an opportunity to have a satisfying life.

I do not normally make commercials for my family, but I do acknowledge what he and many others who are professionals have done, including the member for Morialta in her former role with Autism SA. I commend this motion to the house.

Motion carried.

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