Overcoming hurdles to intervention studies with autistic children with profound communication difficulties and their families
Weisblatt, Emma J.L.
Hotson, Kathryn L.
Ahmed, Zahra Bilal
Villar, Sofia S.
Belmonte, Matthew K.
AffiliationNottingham Trent University
University of Edinburgh
University of Cambridge
Cambridgeshire and Peterborough NHS Foundation Trust
Ben Gurion University of the Negev
King’s College London
University of Bedfordshire
Com DEALL Trust
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AbstractAutistic children and adults who are non-verbal/minimally verbal or have an intellectual disability have often been excluded from Autism Spectrum Disorder research. Historical, practical and theoretical reasons for this exclusion continue to deter some researchers from work with this underserved population. We discuss why these reasons are neither convincing nor ethical, and provide strategies for dealing with practical issues. As part of a randomised controlled trial of an intervention for children with profound autism, we reflected as a multi-disciplinary team on what we had learnt from these children, their families and each other. We provide 10 strategies to overcome what appeared initially to be barriers to collecting data with this population. These hurdles and our solutions are organised by theme: interacting physically with children, how to play and test, navigating difficult behaviours, selecting suitable outcome measures, relating with parents, managing siblings, involving stakeholders, timing interactions, the clinician’s role in managing expectations, and recruitment. The aim of this article is to provide researchers with the tools to feel motivated to conduct research with children with profound autism and their families, a difficult but worthwhile endeavour. Many of these lessons also apply to conducting research with non-autistic children with intellectual disabilities.
CitationMcKinney A, Weisblatt EJL, Hotson KL, Ahmed ZB, Dias C, BenShalom D, Foster J, Murphy S, Villar SS, Belmonte MK. (2021) 'Overcoming hurdles to intervention studies with autistic children with profound communication difficulties and their families', Autism, (), pp. - .
SponsorsNational Institute for Health Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-0816-20019.)
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