Autism has always been considered a condition of childhood. For years, it was thought of as a childhood version of schizophrenia. Its first appearance in the DSM diagnostic manual was as Infantile Autism.
But autistic kids grow up and become autistic adults. And just as the services and support for autistic people dry up as they reach adulthood, research on autism overwhelmingly focuses on kids rather than adults.
With this in mind, my colleagues, Stewart Einfeld and Pat Howlin, organised a small “roundtable” meeting of Sydney-based researchers (including myself), clinicians, and representatives of local autism service providers.
The result was a short report, the full text of which can be read here. It’s not meant to be a definitive statement – just our combined attempt at summarising the state of adult autism research and identifying the gaps (which are many and huge).
Here’s the Conclusion in case you don’t get that far:
Gaps abound in research, policy and service delivery in relation to adults with ASD. The very limited available information indicates that far too many individuals experience poor outcomes during adult life. This situation is unacceptable for individuals, distressing for families, and a lost opportunity for a positive contribution to society.
Researchers must generate the knowledge to enable effective, evidence-informed policies and services to be developed. The way forward involves action on multiple fronts: the development of better diagnostic and assessment methods for adults; research on trajectories throughout adulthood, including longitudinal studies, factors that affect adult trajectories, and the long-term effects of interventions in childhood; systematic study of identification, causes and treatment of co-occurring problems during adulthood; and a focus on issues related to subgroups of adults with ASD.
Recent collaborations formed to address this issue offer reason to be optimistic the challenge can be met.
We’re keen to get feedback. If you’re an autistic person, or someone who loves, cares for, and/or works with a person or people on the spectrum, we’d love to know what you think. What do you agree with? What makes you shake your head in disagreement? What have we missed? And what should the priorities be going forward?
If you have any thoughts, please leave them in the Comments below.