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

By Elizabeth Pellicano, A. Dinsmore, T. Charman. Autism, 2014

740 citations recorded by the source corpus.

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.

Subfields: Clinical Psychology, Cognitive Neuroscience, Education

View Paper: https://www.semanticscholar.org/paper/dd4e6f1eaeb6a1f0a4d66448234b56bb9a723476

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Citations in the corpus

Authenticity in virtual reality for assessment and intervention in Autism: a conceptual review (2016, background): “Increasingly, there is recognition in the autism research field generally (e.g. Pellicano et al., 2014), and in technology development for autism more specifically (e.g. Parsons & Cobb, 2014), that there should be greater participation of ‘end-users’ and other stakeholders, in making decisions…”
Extending the Minority Stress Model to Understand Mental Health Problems Experienced by the Autistic Population (2018, background): “Less than 1 percent of autism research funding in both the United States and the United Kingdom has gone into researching adults on the spectrum or any social factors that may contribute to the high rates of mental health problems experienced by people on the autism spectrum (Pellicano et al. 2014).”
Improving research about us, with us: a draft framework for inclusive autism research (2017, methodology): “For details of what the autism community regard as priorities for autism research funding, please see the work of Pellicano, Dinsmore, and Charman (2014).”
The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype (2016, background): “In their account summarizing the priorities of autism research based on interviews with people with ASC, (Pellicano et al. 2014) stressed the need to understand why women with ASC ‘slip through the net’ and to identify ways to counter this gender-based inequity in current clinical practice.”
Which terms should be used to describe autism? Perspectives from the UK autism community (2016, background): “Autistic people (and their families) are often excluded from the decisions that affect their lives, leaving many feeling disenfranchised as a result (see Pellicano et al., 2014a, 2014b; Pellicano and Stears, 2011).”
Making the future together: Shaping autism research through meaningful participation (2018, neutral): “Fortunately, there has been increasing recognition inter-nationally that this situation needs to change, with autistic advocates, academics and activists being some of the strongest voices to speak to these issues (Michael, 2016; Milton, 2014; Nicolaidis et al., 2011; Pellicano et al., 2011).”