Nothing about us without us: A research agenda
Autistics want to collaborate on genetic research that determines their future.
In light of the recent resounding success of the Asia-Pacific Autism Conference 2013 in creating a positive and collaborative, Autistic friendly environment that valued contributions of people on the autism spectrum we call for the same approach in the autism research community. We believe that APAC 2013 has demonstrated that working together for the betterment of the lives of Autistic people is possible and should be embraced by our research communities.
This inclusion should not merely be a nod to the existence of Autistics it should value their contributions to setting the research agenda and to grappling with some of the contemporary ethical challenges faced by the research community.
If there are to be discussions about the future of the very existence of the genotype of autism and therefore Autistic people we should be involved in those discussions in meaningful ways. There is not a black-and-white answer to the question of pursuing genetic research. The conversations that need to be had need to be deep and deliberative and must include the community of interest.
In particular we call upon the Cooperative Research Centre for living with Autism Spectrum Disorders, the Australasian Society for Autism Research and the Olga Tennison Autism Research Centre to create specific positions for Autistic people within their governance structures, as reviewers of research methods and as decision makers in determining allocation of funds.
Furthermore, we call on the Federal Government to ensure that it does not distribute research monies to consortia that do not have a strategy to ensure the voice of autistic people is sought.
We are convinced that this is the way forward and that Autistics have a great deal to offer the research community particularly in terms of contemporary ethics and participatory approaches to research.
Katharine Annear 0400 003 656 & Geraldine Robertson 0488 651 500