Senator GREIG (9:25 PM) —I rise tonight to draw the Senate’s attention to National Autism Awareness Week, which this year has the theme ‘through the eyes of autism’. As the theme would suggest, the national week of activities, information and other forms of acknowledgment provides a valuable opportunity to highlight and educate the broader community about the experience of those dealing with autism spectrum disorders. Autism spectrum disorders, or ASD for short, cover a range of conditions including autism, Asperger syndrome, PDDNOS—or pervasive development disorder not otherwise specified—and atypical autism, each of which manifests in slightly different ways. Each is distinct in the characteristics it displays and can be of a mild, moderate or profound nature. In addition, people with ASD can display multiple forms of autism.

According to a staff member at one of the state autism associations, having autism can be a profoundly isolating and confusing experience, the impact of which cannot be overestimated. ‘Imagine knowing,’ she says, ‘that you have absolutely no understanding about how the world around you operates and how you should function in it. Imagine just not getting it.’ Many, though not all with ASD, will display a level of intellectual and/or psychiatric disability, while others may also experience physical impairment or particular sensory sensitivities. Those with Asperger syndrome are often of average or above average intelligence but can exhibit a range of learning difficulties.

What is common to many of those with ASD is that their condition is a lifelong disability characterised by impaired social interaction, communication and behaviour. People with autism often find it difficult to understand and interact with their environment and those in it. Simple, everyday interactions and tasks can prove insurmountable, and the result for many is overwhelming anxiety, frustration, confusion and, ultimately, a great deal of distress. Poor language development combined with a tendency to display behaviours ranging from the unpredictable to the repetitive, and often deemed inappropriate, leads to enormous difficulty in developing social and personal relationships, communicating needs and desires and maintaining quality education, employment or other forms of community engagement.

The causes of ASD, which affects approximately six per 1,000 people and around four times as many boys as girls, are unknown. So too are the reasons for the dramatic increase in the number of children with ASD in recent years—a worldwide phenomenon that can only partly be accounted for through improved diagnosis. Improved diagnosis might help identify those once regarded as intellectually disabled, mentally ill, difficult or criminal, but it does not account fully for the growth in prevalence of these conditions.

What is known is that the key to helping kids with ASD best develop their language and social skills, and minimise behavioural difficulties, is to ensure their access to early intervention programs—and the earlier the better. While ASD will still be a lifelong disability, all evidence points to the benefit of early intervention programs, starting with early screening and diagnosis, followed by specialised learning and support programs. These programs can help limit the range and severity of ASD conditions and can promote a lifelong capacity for learning, participation in and contribution to the community and the development of personal relationships. While early intervention programs are expensive—estimates range from $30,000 to $80,000 per child per year—one recent United States study, reported in the Australian, found this investment creates a 20-fold return to the community over the life of a person with ASD.

ASD diagnoses are often possible by the age of two or three—sometimes even earlier—and for Asperger syndrome a few years later. Yet the lack of available services means that ASD is often not recognised until a child starts school, when their learning difficulties and/or problems with social interaction become more readily apparent. By this age, crucial development stages have already passed, some behaviours have become more deeply ingrained and, consequently, some of the opportunities to be gained from pre-school-age support have been lost. But even at that later stage, specialised learning and support services will assist the young child’s integration into mainstream schooling, with all of its attendant educational and social benefits. Without it, many children with ASD are consigned to segregated special education and a raft of lost opportunities.

Given the evidence in favour of early intervention, support, funding and access to services should be a priority for government, yet this commitment is sadly lacking. As is so often the case with disability funding, when the topic of funding for ASD services is raised with government it quickly degenerates into an argument about whether shortfalls are a state or federal responsibility or fall within health, education or disability services. As a result, early diagnosis and support is patchy at best and nonexistent at worst. Parents are then left to cope with the stress and uncertainty of missed diagnoses, new diagnoses and far poorer than necessary education and social outcomes for their children. Others are forced into the financially crippling decision of self-funding access to the services their children need.

A good example of this appeared in the Australian newspaper article I referred to earlier. The article appearing on 25 April this year was titled ‘Self-help as a strategy for autism’ and described the case of James and Louise Morton, whose son Andrew was diagnosed with an ASD at two years of age. Unhappy with the standard and general lack of availability of services their son needed, they created their own service, not just for Andrew but for a dozen children under five years of age. According to the article, when Mr Morton tried to get autism on the 2004 election agenda and wrote to the federal government, the response from the Minister for Health and Ageing, Tony Abbott, was a familiar one: this is a state issue. In spite of the health minister’s deflection of federal government responsibility to the states, the federal government does make some contribution to services for children with ASD. It does so through the Commonwealth State Territory Disability Agreement. It has also committed funds through the Department of Family and Community Services in the Stronger Families and Communities Strategy.

However, there are still major gaps in service availability and the federal government’s reliance on the ‘state responsibility’ chestnut will do little to resolve funding and service shortages and even less to improve the outcomes of children with ASD. These arguments neither resolve the massive inconsistencies that exist between states and territories, which make access to services and support a regional lottery, nor fix the long waiting lists. I would argue that the federal government does have a responsibility to take a leadership role and ensure nationally consistent availability of services. It clearly has responsibility, too, in the area of income support via Centrelink payments such as carer allowance and carer payment.

Many parents caring for children with ASD still cannot access carer benefits to assist them in looking after their children. Asperger syndrome, for example, was added to the list of recognised disabilities only as a consequence of this week’s budget, but PDDNOS still has not made that list. Additionally, tools like the child disability assessment tool, CDAT, which is used to measure levels of functionality and impairment, and therefore eligibility for payments, are notoriously inflexible, lacking in sensitivity and fail to account for individual circumstances. This means that many children with ASD conditions not listed as recognised disabilities often continue to fail to meet eligibility requirements for payment.

Clearly, far more must be done on a national level to research the causes and treatment of ASD and to provide earlier and consistent access to identification, treatment and support for children and their families. I hope the activities of National Autism Awareness Week will help focus attention on these issues. At this particular time, I am pleased to commend the valuable work that is being done nationwide to assist those dealing with the complex range of issues that ASD conditions can present. I urge the federal government to do its part by fulfilling its role as a national leader.