3.1 What are the priorities?

Discussion

In 2016, a UK survey by the research charity Autistica, in collaboration with the NAS, Research Autism and others, asked participants to list their top priorities for research funding (Autistica, 2016). The 1213 respondents included individuals with autism (23%), family members and caregivers (52%), and clinicians and other professionals (25%). The 25 most frequently listed choices were compiled and put to another panel, comprised of equal numbers of people on the spectrum, parents and carers, and clinicians and professionals. The top ten selected areas were as follows:

• Which interventions improve mental health or reduce mental health problems in people with autism? How should mental health interventions be adapted for the needs of people with autism?
• Which interventions are effective in the development of communication/language skills in autism?
• What are the most effective ways to support/provide social care for autistic adults?
• Which interventions reduce anxiety in autistic people?
• Which environments/supports are most appropriate in terms of achieving the best education/life/social skills outcomes in autistic people?
• How can parents and family members be supported/educated to care for and better understand an autistic relative?
• How can autism diagnostic criteria be made more relevant for the adult population? And how do we ensure that autistic adults are appropriately diagnosed?
• How can we encourage employers to apply person-centred interventions and support to help autistic people maximise their potential and performance in the workplace?
• How can sensory processing in autism be better understood?
• How should service delivery for autistic people be improved and adapted in order to meet their needs?

Discussion

Obviously views on the priorities will vary. Beyond the ‘top ten’, other areas listed included evaluating interventions for managing challenging behavior, improving social skills and exploring the most effective early interventions. Research into sensory processing was the only more theory-related item in the top ten. Researching the causes of autism was number 20 on the list.

One topic not mentioned in the Autistica report, but much in the news at the time of writing, is the finding that autism can manifest differently in females, leading to under-diagnosis. You might want to re-read the discussion of this in Week 3 Section 4.1. Also, because the Autistica survey was conducted in the UK, research priorities for autism in other parts of the world were not identified.