Debating autism research priorities in the UK

debateAutism research output, defined by the number of peer-reviewed scientific papers examining the autism spectrum disorder (ASDs) has exploded over the past decade. Volumes of autism research are produced every year, all with the aim of expanding our knowledge of the increasingly complicated and mysterious conditions falling under the autism label. Despite this growth in autism as a research area, science still continues to know very little about the condition(s) in terms of aetiology and onwards effective ways to ameliorate some of the more disabling features further to improving quality of life.

The recent paper by Elizabeth Pellicano and colleagues* sought to “establish whether the pattern of current UK autism research funding maps on to the concerns of the autism community”. Researchers asked various stakeholder groups – people with autism / autistic people, immediate family members, autism professionals and autism researchers – about their views on autism research and whether current research profile reflected where they wanted to see autism research heading.

Based on data derived from an online survey and various focus groups and interviews, researcher provided participants with various research pertinent questions regarding some of the main aims and objectives of autism research. Stakeholders were asked to grade the questions on their importance to them. Questions covered areas such as deciding the relative weighting of genes and environment when it came to autism causation, and looking at the best ways to improve life skills for those on the spectrum.

The study results suggested that “there was a clear mismatch between what is being researched and the research that is preferred and prioritised by the UK’s autism community”. All stakeholder groups agreed that future autism research priorities should be drafted to focus on research that makes a day-to-day difference to the lives of those with autism. This included identifying “effective public services and evidence-based interventions” pertinent to enhancing life skills. The importance of continued research into the frequency and effects of co-occurring conditions was also a common theme across several stakeholder groups.

Although some differences in research priorities existed among the stakeholder groups – autistic adults were less likely to assign importance to the question of treating core symptoms than other groups – there was broad agreement on the discrepancies between the current autism research focus and where research should be perhaps looking.

 

* Pellicano E. et al. What should autism research focus upon? Community views and priorities from the United Kingdom. Autism. 2014. April 30.

Read more about this paper: http://questioning-answers.blogspot.com/2014/06/what-should-autism-research-focus-upon.html