Monday, 17 November 2014

Study shows community dissatisfaction with autism research

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Dr Pellicano said that autism research teams should be mutually supportive partnerships with the autism community, so that their views and perspectives have impact on the decision process. Dr Pellicano said that autism research teams should be mutually supportive partnerships with the autism community, so that their views and perspectives have impact on the decision process. Image: Kin Mun Lee

WHAT the autism community wants is not exactly what they get out of current research into autism, according to a comparative analysis involving international researchers.

The UK-based study by Dr Liz Pellicano, director of the University of London's Centre for Research in Autism and Education and herself a UWA School of Psychology graduate, revealed a bias towards biomedical investigations in the current landscape of autism research.

Among all autism-related research projects funded between 2007 and 2011, the majority focused on the underlying biology and cause of autism.

While 18 per cent of projects involved research into treatment and intervention only six per cent addressed the effect of services or the place of autism in society.

Speaking at a recent public lecture at UWA Dr Pellicano said the knowledge produced by the explosion of research into autism isn't translated into practice.

"It should make us think about how to do autism research, not just in the UK, but worldwide," she said.

Making autism-related research more relevant

The researchers surveyed more than 1600 autistic people, relatives, practitioners and researchers about which aspects of autism that they thought deserve greater attention.

The different stakeholder groups appeared to agree that more needs to be learnt about how autistic people think, how public services better meet their needs and how their life skills can be improved.

"These aspects highlight priorities different from the current research profile in the UK," Dr Pellicano said.

She said the translational gap can be narrowed if the research focus is broadened to include studies of immediate practical concern that assist with day-to-day living with autism.

Dr Pellicano said that autism research teams should be mutually supportive partnerships with the autism community, so that their views and perspectives have impact on the decision process.

Telethon Kids Institute head of autism research Professor Andrew Whitehouse says the study's findings are highly applicable to the Australian setting.

"The engagement of consumers, particularly in autism research, is long overdue," he says.

"What researchers feel is important is not necessarily what is important to those touched by the condition."

Notes: The public lecture by Dr Pellicano was co-sponsored by the Institute of Advanced Studies, the ARC Centre of Excellence in Cognition and its Disorders and the School of Psychology at UWA.

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