• Overcoming hurdles to intervention studies with autistic children with profound communication difficulties and their families

      McKinney, Ailbhe; Weisblatt, Emma J.L.; Hotson, Kathryn L.; Ahmed, Zahra Bilal; Dias, Claudia; BenShalom, Dorit; Foster, Juliet; Murphy, Suzanne; Villar, Sofia S.; Belmonte, Matthew K.; et al. (Sage, 2021-04-07)
      Autistic 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.