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Autism Spectrum Disorder

Autism Spectrum Disorder

Advice on legislation or legal policy issues contained in this paper is provided for use in parliamentary debate and for related parliamentary purposes. This paper is not professional legal opinion.
Briefing Paper No 05/2013 by Lenny Roth


The growing number of children diagnosed with Autism Spectrum Disorder (ASD) is an issue of concern both in Australia and overseas. This concern is reflected in the 2008 resolution of the United Nations General Assembly for a World Autism Awareness Day (held on 2 April). More detailed concerns have been outlined in recent parliamentary debates here and elsewhere.

ASD is a developmental disorder that emerges in early childhood and is characterised by impairments in social interaction and communication, and restricted and repetitive behaviour and interests. As indicated by the word “spectrum”, the nature and severity of ASD and its impact on levels of functioning can vary widely from one person to another. The disorder is much more common in males than females. The causes of ASD are not yet clear but it appears that it is caused by a combination of genetic and other risk factors. The diagnostic criteria for ASDs are outlined in American Psychiatric Association’s Diagnostic Statistical Manual of Mental Disorders (DSM) and in the World Health Organization’s International Classification of Diseases. On 17 May 2013, a new edition of the DSM (DSM-5) was released which contains major changes to the criteria including replacing a number of distinct ASD disorders with one disorder (ASD). Diagnosis of ASD is based on behavioural observation, commonly by a developmental assessment team.

A 2006 report was the first study to estimate prevalence rates of children with ASD across Australia. The study made different estimates based on different data sources. Based on Centrelink data, it estimated a prevalence rate of ASD of 62.5 per 10,000 (or one in 160) for 6-12 year old children. The Chairperson of the Australian Advisory Board on ASD said that this finding could be extrapolated to suggest that there could be as many as 125,000 people with ASD in Australia. An ABS report based on data from the 2009 Survey of Ageing, Disability and Carers estimated that 64,600 people in Australia had ASD but noted that this might be an underestimate. The prevalence of ASD in Australia and overseas appears to have increased significantly in recent decades. It is not known to what extent this increase reflects an increasing number of people with ASD or other factors, including an expansion in the diagnostic criteria and an increase in awareness of ASD.

Impacts and costs
Based on the same 2009 survey data, the ABS reported that people with ASD needed assistance with a range of activities: over 40 per cent needed assistance with self-care, around 60 per cent needed assistance with mobility, and over 60 per cent needed assistance with communication, as well as with cognitive or emotional tasks. About one-third of people with ASD needed assistance in these areas on a daily basis. The ABS also reported that people with ASD have significantly lower rates of completing post-school qualifications and participating in the labour force than other people with a disability. Studies have also shown that ASD can have a significant emotional and financial impact on families. A 2011 report estimated that the annual economic costs of ASD in Australia were between $8.1 billion and $11.2 billion.

Early intervention programs
There are a range of early intervention programs for children with ASD. These interventions have been classified broadly as: behavioural, developmental, combined, therapy-based and family-based. Reports assessing the evidence base on the effectiveness of the different interventions were published by the Federal Government in 2006 and in 2012. The 2012 report concluded that the evidence base was still very limited, but that high intensity interventions which address the child and family’s needs using a behavioural, educational and/or developmental approach have been shown to be the best early interventions. The report assigned research ratings to the different models/programs currently available. The only programs/models that received the “established” rating were Applied Behavioural Analysis and Early Intensive Behavioural Intervention. A number of other programs/models were given an “emerging” or “best practice” rating: e.g. DIR Floortime (developmental) and TEACCH (combined).

NSW Government initiatives
The NSW Government provides a range of support for people with disabilities (including ASD) through various agencies. NSW Health provides diagnostic and early intervention therapy services. The Department of Family and Community Services provides and funds early intervention services, every-day living support, respite care, and post-school programs. Family and Community Services has introduced several ASD-specific initiatives including: ASD-specific early intervention services, a commitment to provide 1,000 flexible funding packages over five years to assist children with ASD, and the establishment of an ASD specific childcare centre in Western Sydney. The Department of Education and Communities provides learning support in the educational environment. In 2011, Education and Communities noted that it provides support to over 10,000 students with ASD in public schools in NSW, both in regular classes and in 122 specialist ASD support classes.

Federal Government initiatives
In 2008, the Federal Government introduced the Helping Children with Autism (HCWA) Package, supported by funding of over $190 million over four years. A major element of HCWA is that children who have been diagnosed with an ASD before the age of six can access $12,000 in early intervention support over two years from a range of authorised providers. Other components of the package include: funding of 40 autism advisors across Austraila to provide information for parents after diagnosis; Medicare rebates for diagnosis and visits to allied health professionals, 150 ASD-specific playgroups, professional development for 450 teachers and support staff, and an ASD website. In addition to the HCWA initiatives, the Federal Government has funded six ASD-specific early learning and care centres including one in South-West Sydney.

Gaps in support
A 2010 national report on post-diagnosis support for children with ASD identified a number of gaps in support including: a lack of tailored ASD programs, a need for a transition process that supports families from diagnosis into therapy, a need for detailed information which is localised and personalised, and the need for case management. The report concluded that significant resources were being invested to help families with children with ASD but that there were long waiting lists for allied health services and intensive treatment services. A similar report in relation to older children and young people and their families also identified a number of gaps in support. In 2011, the Australian Advisory Board on ASD issued a National Call to Action which called for action in seven broad areas including diagnosis, early intervention services, education, a comprehensive and integrated support system, an improved range of services for adults, as well as the establishment of a national ASD register and a national research program.

National disability and school funding reforms
The National Disability Insurance Scheme (NDIS) has the potential to greatly improve the lives of people with a disability. This scheme will fund long-term high quality care and support for people with significant disabilities, including ASD. NSW has agreed to establish the full scheme by 1 July 2018 (most other States will also establish the full scheme by July 2018 or July 2019). The first stage of the scheme will be launched in five pilot sites including the Hunter in NSW from July 2013. The Australian Advisory Board on ASD supports the NDIS but has highlighted the importance of considering the distinct aspects of ASD within all elements of the design of the scheme. Another proposed major national reform that could benefit to children with ASD is changes to the school funding model, as recommended in the 2011 Gonski report. NSW has agreed to participate in these school funding reforms.

Initiatives in selected other states
In 2009, the Victorian Government released an Autism State Plan. This Plan was developed in recognition that ASDs are becoming more prevalent and demand on services and support is growing, and that ASDs have particular features that distinguish them from other conditions. The Plan identified six priority areas for the next ten years. The current government in Victoria has said it is committed to the Plan but it may have been superseded by the new State Disability Plan. One of the strategies in the Disability Plan is to provide better support for people with ASD. In 2011, the Queensland Government said that it was in the process of developing an ASD plan but no such plan has been released. In Queensland, ASD-specific initiatives include an Early Intervention Initiative and increased funding for speech pathologists in schools.

Initiatives in selected other countries
In April 2008, the Welsh Government published an ASD Strategic Action Plan. This was believed to be the first national ASD strategy in the world. Since then, all other UK jurisdictions have developed an ASD Strategy. The strategies in two jurisdictions were developed in order to comply with new legislative provisions. In the US, the Combating Autism Act 2006 authorised expanded federal activities in relation to autism research, prevention, treatment, and education, and was supported by funding of almost $1 billion over five years. Two initiatives are expanded training programs for health professionals, and funding for States to develop ASD Plans. A 2011 report on ASD services in nine States noted several issues (including gaps in the evidence base) as well as promising practices. The States agreed on the need to develop a broader and more intensive range of services designed for discrete age groups.