Australia and Autism
KeywordsAutism Spectrum Disorder Intellectual Disability Autism Diagnostic Observation Schedule Autistic Disorder Regular School
Australia has a land area about 80 % the size of the USA, China, Europe, and Canada, and 30 times the size of the UK. The total population of Australia is 23 million, with most inhabitants living in several large cities, each with a population of between one and four million. There is a federal system of government, as well as six states and two territories, each with its own state legislature and service systems for health, education, community services, and law. Further, each city or municipal area has a local council and responsibility for services that impact on people with disability. There are thus three levels of government all with involvement in services of various kinds, quite apart from a range of private foundations, organizations, and corporations which also provide service.
The history of autism in Australia follows that in the USA and the UK, beginning with the pioneering work of Kanner in the USA (Kanner 1943). However, specific interest in autism within Australia, apart from individual clinical work, did not emerge until the 1960s. At this time, significant research findings were beginning to emerge from studies in the UK and USA, and trends in child and adolescent psychology and psychiatry in Australia largely followed developments in these countries. Initially most research and clinical interest was in children in early school year (Bettelheim 1967; DeMeyer et al. 1972; Bartak et al. 1975), usually male, with full scale IQ under 70, with quite severe features of autism and with parents who appeared emotionally stressed. Many clinical programs were focused on the involvement of parents in the development of their child’s autism. This was partly because autism was still embedded in psychiatry, and child psychiatric programs in Australia had tended to follow a psychodynamic orientation in the absence of much in the way of objective research on causes of behavioral problems generally. Input from other health professionals from the 1950s to the 1980s would often be limited to neurological opinion to exclude underlying medical conditions. The work of Bettelheim (1967) more specifically in the area of autism within a psychodynamic framework also influenced programs in Australia at this time. However, from the 1960s, new approaches, taking into account behavioral criteria for autistic disorder and intellectual ability, were beginning in Australia, following developments overseas, including the work of Rutter and Schopler (1987), Rimland (1964), DeMeyer et al. (1972), and Ornitz and Ritvo (1968) in the USA and Bartak et al. (1975), Hermelin and O’Connor (1970), and Frith (1989) in the UK.
From the 1980s, in line with other changes in the way services were provided to children (see below), Australia has adopted objective diagnostic criteria as they have been developed and is looking with interest at the new Diagnostic and Statistical Manual-5 criteria for autism from the American Psychiatric Association (2013).
As mentioned above, diagnosis of autism was done predominantly by psychologists and psychiatrists in Australia until the 1980s. The service context is important here in thinking about the changes that have occurred over time and the current situation. In Australia, the federal government funds health professionals, including doctors, allied health professionals, and psychologists through Medicare funding, to work in private health-care settings which are run as businesses. In 2008, the federal government launched a funding program called “Helping Children with Autism” (HCWA) that provided funding for diagnosis and assessment of children suspected as having autism, using Medicare billing. The HCWA funding also included intervention funding (see below). The states and territories provide funding for public health-care facilities, including the salaries of health-care professionals. Each state and territory can take and has taken a different, and often changing, approach to the service type and location that they will fund for diagnosis and assessment of developmental problems, including autism. Some diagnostic services are based in hospitals and others in community settings. Consistent features across states and territories have been (1) the emergence of multidisciplinary teams based in publicly funded services, from the 1960s but not widespread until the 1980s for the diagnosis and assessment of children with developmental problems, including autism, usually including a pediatrician (less commonly a child psychiatrist), speech pathologist, and psychologist, but with varying composition between states and territories and between regions within states and territories and no given per capita rationale for geographic location; (2) increasing numbers of pediatricians, speech pathologists, and psychologists working in private settings, in isolation but providing parts of the assessment required for a diagnosis of autism; and (3) greater, but not consistent between services or clinicians, use of standardized assessment instruments (e.g., Autism Diagnostic Observation Schedule (ADOS) (Lord et al. 2001), Ehlers and Gillberg’s High Functioning Autism Syndrome Screening Questionnaire (ASSQ) (1999), the Autism Diagnostic Interview-Revised (ADI-R) (Rutter et al. 2003), or the Diagnostic Interview for Social and Communication Disorders (DISCO) (Wing et al. 2002)). In Western Australia, an active group of clinicians has developed a standard assessment model which has formed the basis of a multidisciplinary diagnostic and assessment procedure. This procedure has not yet been taken up throughout Australia. Consistent with other high-income countries, Australia has seen a trend toward earlier diagnosis of autism, such that it is now common to see children as young as 2 years of age, and sometimes less than two, presenting with concerns. Children with relatively good language skills are sometimes still not being seen by diagnostic teams until 8–12 years of age.
In parallel with other high-income countries, milder cases are also being diagnosed in Australia. The term autism spectrum disorder had high uptake in Australia by the early 2000s. That conceptualization combined with the use of DSM-IV’s diagnostic category pervasive developmental disorder-not otherwise specified (PDD-NOS) and the acceptance of PDD-NOS as sufficient for service entry saw an increasing number of children with fewer diagnostic features and of lower severity level being labeled.
Australia has followed the USA, Canada, and the UK in embracing early intervention for children with developmental disorders, including autism. Publicly funded early intervention services developed in Australia during the 1960s. Autism associations also began in Australia in the 1960s, and in that role were some of the earliest “early intervention” providers. Traditionally state governments have provided early intervention for children with substantial developmental problems, based on functional ability and needs rather than diagnosis. The HCWA funding of 2008 transformed the early intervention landscape in Australia, with families receiving some dedicated federal funding for early intervention services and with one early intervention-enriched child care facility being established in every Australian state. The HCWA funding package provides funding for early intervention for children from diagnosis up to their seventh birthday (however, they must be registered by their sixth birthday), with five being the age of school entry for most children in Australia. An essential and increasing feature of these programs has been to provide support and education for parents so that they can supplement the program activities with structured activities at home.
In 1984, the State of Victoria conducted a review of educational services for disabled children. Prior to this, Victoria and other Australian states had a long history of provision of specialized educational settings for children with various disabilities. Some special schools catered for children with IQ under 70, others for children with sensory or motor difficulties. Schools for children with severe intellectual disability were run by the State Health department as were a number of large long-stay residential institutions, some of which had as many as 900 residents many of whom had been there since early childhood for periods of many years. Children with autism had often been thought to be ineducable and tended to end up in small Health Department schools or the larger residential training centers. The review resulted in radical findings and recommended total inclusion in normal schools for all children with a disability. The small schools for children with severe disability were to be transferred to the State Education Department, and it was expected that all specialist schools would be gradually phased out and closed as all children with a disability would eventually be enrolled in local community public or private schools providing general educational facilities. Where a school had more than six children with special needs, the State Education Department would provide resources to employ a special education teacher and classroom aides. Similar changes have occurred elsewhere in Australia. However, in many regular schools, aides have often been left to work on their own with children with a disability with insufficient specialist guidance. In addition, closure of special schools has not continued. As a result, while many children with autism go to regular schools, a significant number continue to attend specialist schools which were originally set up for children with intellectual disability and have not been geared to the specific needs of children with autism. Outcomes for children with autism in all of these schools have tended to depend upon the quality of individual teachers and in regular schools, upon the degree of support of school principals. In addition, starting in NSW and Victoria in the 1970s, special schools for children with autism were set up with financial support by parents and private charitable foundations. This followed a similar pattern to what had occurred in the USA, UK, and other parts of the world. In Australia, State Educational Authorities have come to provide some degree of financial and administrative support to such schools in most states.
Over time state autism associations and service providers have recognized at least to some extent that children do not grow out of autism but rather grow with it and become adults with autism. One consequence has been the development of social skills programs that are relevant to the development of both casual and more permanent and intimate social relationships. Some of these include sexual and other health topics as well as the development of basic interpersonal communication skills. As an example, one very successful program developed in Victoria was a “Train the Trainer” program. This was an established course already taught at a technical and further education college which qualified people to become adult education trainers. It was modified to focus specifically on autism. Successful graduates were trained to be public speakers and trainers in the field of autism and could run single sessions or short courses for members of the general public to learn about autism. Twenty adults with autistic disorder were recruited to take the course. Much of the course involved group project activity as well as extensive class discussion. To some degree of surprise amongst both staff and the class members themselves, participants enjoyed the group activities, and ultimately, 17 of the 20 completed the course and obtained graduate certificates as trainers.
All states in Australia have autism support associations. These were mostly set up by parents of children with autism when there were few facilities and little governmental support, beginning in the 1960s. In most states, the association has at least one specialist school or class for children with autism and also provides services for children and adults with autism as well as provides information for members of the public, advocacy for the autism community, and parental support services.
Legal Issues, Mandates for Service
While there is no legislation specifically directed to people with autism, Australia has for many years had disability relevant legislation federally as well as in all states and territories. In general, most of this was enacted from 1993 following the United Nations Declaration on the Rights of Disabled Persons. In general, legislation either makes discrimination illegal or makes legal provision for supply of services to people with disability. In 2013, the Federal Government announced a National Disability Insurance Scheme (NDIS) to be developed in cooperation with state governments, to provide financial support to people with disability. This is being modeled on the federal scheme for financial support of people with autism and insurance schemes for those left with a disability following an accident.
Overview of Current Treatments and Centers
Today, each state and territory has their own systems for assessment and diagnosis of autism. In some states, these systems still reside in mental health services, while in others, they are embedded in child health or disability services. Diagnostic practices within these services vary within and between states. A parallel private system for diagnosis and assessment, as described above, continues to operate, and assessment procedures vary between individual clinicians. In response to a need for quality and consistency, as well as recognition of the need for quality and consistency for other service providers, standards and a scheme for certification have been developed. In this scheme schools, clinics and individual practitioners may become certified as skilled practitioners or service providers in the field of autism. This system is similar to the British accreditation scheme for schools and centers in the UK but includes certification of individual practitioners and services for adults as well as of children’s services, as in the UK. The Australian system was developed through the local state autism association in Victoria but is supported by the federal peak body for autism in Australia, the Australian Advisory Board on Autism Spectrum Disorders.
Early intervention services continue to be offered by state and federal governments and often operate as parallel services. Many autism associations also provide early intervention services for children and their parents/carers and educational services, either on a fee for service basis or supported by federal or state funding.
This has been identified as a problem by government, professionals, and consumers, and it is hoped that the new National Disability Insurance Scheme will streamline and improve coordination of care for early intervention.
The issue of inclusion continues. In some countries other than Australia (e.g., Britain), there are schools that cater specifically for children with autism and some of these extend to full secondary education. Children attending such schools might then have 12 years of school education with only others with autism as fellow students. In Australia, there are a number of special schools for children with autism. However, these are generally at primary level. Few children with autism would stay in an exclusively autism setting to school leaving age of 17–18. Inclusion in regular schools has generally been actively promoted in Australia. However, the issue remains as to which setting is more effective for children with autism and few controlled studies have been carried out. Those that have been carried out, including the early studies (Bartak and Rutter 1973), have shown clear support for structured educational methods whatever the overall setting.
Awareness and consideration of the needs of adults with autism continues to develop gradually in Australia. This has been referred to already in connection with social skills programs. However, it has become apparent that a much wider range of services than those provided for children is necessary for adults. These will include work preparation and further education, health education and services, counseling and psychiatric services, aged care, housing and independent living options, leisure and recreational training, transport options and training, and forensic and judicial training and orientation.
Social Justice and Forensic Issues
Although there are few studies either in Australia or elsewhere (Bartak 2011; Cashin and Newman 2009; Newman and Ghaziuddin 2008; Mouridsen 2012), it is apparent that a number of adults with autism may be charged with a variety of offenses. In many instances, the offense will have occurred inadvertently and essentially through a lack of comprehension both on the part of the person with autism and through misunderstanding of autistic behavior by police and judicial staff. While the limited evidence suggests that people with autism spectrum disorders are not more likely to offend than others, they are overrepresented in the justice system. In part this may be owing to failure by family members and staff of community agencies (such as schools or medical facilities) to recognize autism in the respective individual. He or she may then inadvertently break the law for one or other of the above reasons. Provision in this area requires better training of police and judicial staff to increase their understanding of autism, and this is starting to occur in Australia through joint seminars and other training programs with staff from autism associations, university departments, and members of police and justice departments.
Overview of Research Directions
Until recently, Australia had no systems in place or funding models to connect autism researchers beyond informal email networks. Over the last 5 years, the Australasian Society for Autism Research (ASfAR) has been established and now has over 180 members. This year the federal government funded an application for the formation of a Cooperative Research Center (CRC) for living with autism spectrum disorder. The federal government will provide over $30 million for 8 years, with additional cash and in-kind contributions from participants and partners exceeding $60 million. The CRC will support an “across the life-span” program of research. In parallel with other high-income countries, Australian scientists, researchers, and professionals with important skill sets for research in autism (e.g., geneticists, information technology experts, bioengineers, ethicists, and lawyers) have been forming transdisciplinary and intersectoral partnerships with autism experts to advance our knowledge of autism in a way that should lead to improved care and outcomes for those affected. Many universities have acknowledged the importance of autism and related disorders by establishing Chairs in autism and developmental medicine, or similar, and Research Institutes have developed relevant research group hubs. Increasingly, autism associations and the Australian autism peak body are linking directly with researchers.
References and Reading
- American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders-fifth edition. Washington, DC: American Psychiatric Publishing.Google Scholar
- Bartak, L. (2011). Educational approaches to the prevention of harmful and unlawful behaviour in later development. Paper presented at Asia Pacific Autism Conference, Perth, Sept 2011.Google Scholar
- Bettelheim, B. (1967). The empty fortress: Infantile autism and the birth of the self. New York: Free Press.Google Scholar
- DeMeyer, M. K., Alpern, G. D., Barton, S., DeMeyer, W. E., Churchill, D. W., Hingten, J. N., Bryson, C. Q., Pontius, W., & Kimberlin, C. (1971). Imitation in autistic, early schizophrenic and non-psychotic subnormal children. Journal of Autism & Childhood Schizophrenia, 1(3), 311–326.CrossRefGoogle Scholar
- Frith, U. (1989). Autism: Explaining the enigma. Wiley Online Library.Google Scholar
- Hermelin, B., & O’Connor, N. (1970). Psychological experiments with autistic children. New York: Pergamon.Google Scholar
- Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217–250.Google Scholar
- Lord, C., Rutter, M., DiLavore, P. C., & Risi, S. (2001). Autism diagnostic observation schedule. Los Angeles: Western Psychological Services.Google Scholar
- Rimland, B. (1964). Infantile autism: The syndrome and its implications for a neural theory of behaviour. New York: Appleton-Century-Crofts.Google Scholar
- Rutter, M., Le Couteur, A., & Lord, C. (2003). Autism diagnostic interview-revised. Los Angeles: Western Psychological Services.Google Scholar