Autism in Australia

[Ed. Katharine is the second in our series of international guest posters. Thank you Katharine for blogging with us!]

There has been an increased focus on autism in Australia in recent years to the point of it becoming an federal election issue. Autism has been portrayed as a crisis, an epidemic, a puzzle, an over diagnosed condition, a struggle and a financial burden for families, a scientific curiosity as well as the root of special and extraordinary talents. Television debates have been held regarding the treatment of people with autism and national newspapers and magazines have run various features on autism. Culturally the portrayal of autism is robust and varied. Movies such as The Black Balloon and Max and Mary, bands such as The Vines, Rudely Interrupted and Donna and the Aspinauts, and an all Autistic theatre ensemble named Triple A have all made recent contributions to the cultural landscape of autism in Australia sparking controversy and debate and offering insight.

Beginning life with autism in Australia can be complex. Obtaining an ASD diagnosis varies from state to state as does eligibility for services dependant on an ASD diagnosis. The accepted standard seems to be diagnosis by a multidisciplinary team, using the DSM IV TR Criteria and standardised diagnostic tools. There are many pathways to diagnosis including via state run health services, some local not for profit Autism Associations and private practitioners. The Federal Government recently introduced rebates through the Medicare system for diagnosis of children under the age of 13 as well as treatment items for children up to the age of 15. The Government also recently introduced grants of $6,000 a year for two years to contribute to the costs of early intervention from multidisciplinary teams for each child under the age of seven with a Pervasive Developmental Disorder. Each of these services and systems has their own set of paperwork and/or registrations. Waiting times of up to 12 months are often experienced for families of children seeking a diagnosis. Adult diagnosis is a far more problematic area with little government support or expertise available.

Learning with autism in Australia has its own set of challenges. Access to education for people with ASD again varies from state to state with some states having autism schools and autism satellite classrooms and others having fully inclusive education policies that mainstream most students with ASD with varying degrees of success. The tertiary system has the National Regional Disability Liaison Officer Initiative through which students can develop Access Plans to ensure appropriate access to curriculum and environments through an Officer at each institution, providing you have the skills to access the Officer. Access to all education is covered by the Australian Disability Discrimination Act. However, despite legislation, the reality for many students is that it is hard to access appropriate education opportunities and recent studies show that over 90% of students with ASD are bullied at school, choice is limited and exclusion rates for students with ASD are high.

Living a full and rewarding life with autism in Australia is a dream shared by many. However the biggest challenge facing Australian Autistics is the lack of planning for the future. There is no system of support for young people to grow into, no approach to ensuring that the education, accommodation, employment, health and community needs of Autistic adolescents and adults are met. The major parent driven advocacy organisation Autism Asperger Advocacy Australia (A4) has previously been a loud voice for the needs of children and promoting the early intervention agenda and have had some of their needs met with the Federal Government’s initial package for children. For over 10 years there has also been a group of Australian Autistic adults surviving and supporting each other online. In 2004 they organised as grass roots advocacy group called AANSA and in 2008 became the Autistic Self Advocacy Network (ASAN) of Australia and are slowly moving adult issues into prominence. The challenge now is for self advocates to open up a dialogue with the government and key stakeholders and to demand a National Autism Plan with a view to the use of good science, extensive consultation and innovation in service design and delivery for life long services.

What Australia offers those with autism now has to be hope, hope that governments will keep listening, hope that communities will unite around this issue as they do with so many others, hope that Australia’s culture of ‘a fair go’ extends to all citizens, hope that Australia will join others on the international human rights stage and sign the optional protocol to the UN Convention on the Rights of People with Disabilities affording us real human rights protection. Hope that together we can come up with a plan that delivers real quality of life to all Autistic citizens.

I hope that we will find a cure - A cure for the desire to profit from people who live with autism, people, who should be afforded the best science, the best education, the best healthcare, and the best support simply because they have a right to it.