What should autism research focus upon? Community views and priorities from the United Kingdom

Abstract

The rise in the measured prevalence of autism has been accompanied by much new research and research investment internationally. This study sought to establish whether the pattern of current UK autism research funding maps on to the concerns of the autism community. Interviews and focus groups were conducted with autistic adults, family members, practitioners and researchers to identify their priorities for research. We also captured the views of a large number of stakeholders via an online survey. There was a clear disparity between the United Kingdom’s pattern of funding for autism research and the priorities articulated by the majority of participants. There was general consensus that future priorities for autism research should lie in those areas that make a difference to people’s day-to-day lives. There needs to be greater involvement of the autism community both in priority setting and in research more broadly to ensure that resources reach where they are most needed and can make the most impact.

Implementing and evaluating early intervention for children with autism: Where are the gaps and what should we do?

“…Fifth, intervention trials should include constructs related to implementation processes and outcomes. Importantly, numerous barriers to this research agenda exist, reflecting the heterogeneity of strengths and needs within the ASD population, conflicting views on intervention research goals and priorities among different stakeholders [including self-advocacy groups; Pellicano, Dinsmore, & Charman, 2014], and the logistical challenges associated with flexible and rigorous implementation of early interventions for ASD. However, efforts towards these goals have the potential to generate a wealth of 'usable' knowledge to improve outcomes for children with ASD in community settings globally.…”

‘I am who I am’: Reputation concerns in adolescents on the autism spectrum

“…Qualitative methods can provide a deeper understanding of reputation in autism from the perspective of autistic individuals themselves (Bölte, 2014), and highlight previously unconsidered explanations of reputation in autism in order to inform future experimental work. Qualitative methods can also empower individuals whose voices often go unheard (Carrington & Graham, 2001) -and adolescent autistic voices are all too often unheard in autism research (Pellicano, Dinsmore & Charman, 2014). Our previous quantitative work on reputation management (Cage et al, 2013) could not easily be explained by behavioural paradigms alone -suggesting that qualitative research can tell a story that cannot be told alone by numbers (Brown & Lloyd, 2001).…”

A designer's approach: how can autistic adults with learning disabilities be involved in the design process?

“…Surprisingly, however, a person's relationship with the environment is rarely featured within autism research, which instead focuses largely upon the underlying biology and causes of autism (Pellicano, Dinsmore, and Carman 2014). The revised DSM-5 is therefore an important milestone that puts the sensory environment back onto the roadmap within autism research, creating a natural avenue for designers to explore how their deep understanding of the sensory quality of materials, skills in making and spatial/visual thinking can develop new modes of non-verbal communication, dialogue and understanding around an autistic person's everyday experiences.…”