Written by Katharine Annear ASAN AUNZ Chairperson
I am Autistic. Not the kind of Autistic that was stereotyped in the decade I was born (the 1970’s). I am part of the wave people diagnosed later in life with the autism spectrum disorder, Asperger syndrome. I was diagnosed at the age of 30 – a long time coming. I had an early life peppered with social and emotional difficulties and treatment for depression, anxiety and behavioural problems. My life was not a joyless struggle though as I found solace in intellectual pursuits, reading and art. I also partook in many teenage rites of passage – although not with the social sophistication of my peers. I have also achieved success beyond even my own expectations and am grateful for the opportunity to have had my life put into perspective by the diagnosis I received.
Life for many Autistic people was a struggle over much of the 20th century; from the definition of the disorder to varying attempts to treat it. Many children were deemed simply too difficult to treat and were put away in places to be forgotten about. Others underwent rigorous behaviour modification utilising water spray and electric shock. There were also a generation of mothers who were blamed for their child’s autism by a charlatan of a doctor named Bruno Bettelheim.
In the 21st Century the picture is thankfully somewhat different in that institutionalisation and punishment are no longer part of the recommended regime for Autistics. Society though is still on a long journey to acceptance of people with autism and autism is still a confusing and often distressing set of social, communication and behavioral difficulties affecting individuals and families.
During 2102 after working as an informal network for over ten years a group of Autistic people (diagnosed with both autism and Asperger syndrome) registered a not for profit organization, the Autistic Self Advocacy Network of Australia and New Zealand. This was also a long time coming. We as Autistic adults recognise that a proactive stance means that thousands of children and young people will inherit a more effective system and a more understanding community and that our strengths talents and efforts will be recognised alongside those of our peers.
Self-advocacy is a tricky concept as it requires conditions such as self awareness, self-confidence and persistence. Persistence is one thing we have in abundance but the other qualities are things that are affected not only by autism but also by society’s enduring marginalisation through lack of appropriate supports, and through neglect and abuse.
All of this is important to understand in the light of recent events in the autism community. The Asia Pacific Autism Conference ran over the past week and several things took place that have been a long time coming. The conference itself was the largest in the southern hemisphere and this year for the first time ever it supported and embedded self-advocacy program for young people with autism aged 18-30 aptly named Future Leaders. These young people also greeted eminent Autistics from around the globe including Ari Ne’eman member of the US National Council on Disability and President of the Autistic Self Advocacy Network. These events mark a profound shift in the recognition of the need to support Autistics to have a voice of our own and to learn to contribute to the many levels of research and policy making that affect us.
This exciting time was juxtaposed by the premiere of a theatre work called ‘History of Autism’ devised and performed by Company@ Autistic Theatre, directed by Julian Jaensch another Autistic diagnosed later in life. This theatre piece traverses the 20th century and examines the history and impact of autism the condition and autism the diagnosis and chronicles the treatment of individuals and families affected by autism. Ironically as a member of Company@ my biggest role in this piece was to play a 1970’s housewife struggling to bring up a child on the autism spectrum. Whilst the story is not derived from my own there are echoes that resound and storylines that traverse the years of misunderstanding and mistreatment of Autistics. Audiences were deeply affected by the performances metered out by the Autistic cast and the degree to which they bring home the power of our personal and political struggles.
When all is said and done during this brief point in history I hope that we have begun to carve out a legacy for those that follow in our footsteps and that one message resounds ‘Nothing about us without us’
A long time coming.