Attitudes of the autism community to early autism research

Abstract

Investigation into the earliest signs of autism in infants has become a significant sub-field of autism research. This work invokes specific ethical concerns such as use of 'at-risk' language, communicating study findings to parents and the future perspective of enrolled infants when they reach adulthood. This study aimed to ground this research field in an understanding of the perspectives of members of the autism community. Following focus groups to identify topics, an online survey was distributed to autistic adults, parents of children with autism and practitioners in health and education settings across 11 European countries. Survey respondents (n = 2317) were positively disposed towards early autism research, and there was significant overlap in their priorities for the field and preferred language to describe infant research participants. However, there were also differences including overall less favourable endorsement of early autism research by autistic adults relative to other groups and a dislike of the phrase 'at-risk' to describe infant participants, in all groups except healthcare practitioners. The findings overall indicate that the autism community in Europe is supportive of early autism research. Researchers should endeavour to maintain this by continuing to take community perspectives into account.

Whose Expertise Is It? Evidence for Autistic Adults as Critical Autism Experts

“…A key limitation of this study, and other Internet-based autism research (e.g., Kapp et al, 2013; Pellicano et al, 2014b; Kenny et al, 2016; Fletcher-Watson et al, 2017), is that we did not verify diagnosis of participants who self-identified as autistic. Some participants who self-identified as autistic might not have met criteria for autism while some participants who self-identified as not autistic may have been motivated to participate because they have heightened autistic traits, but have not been formally diagnosed.…”

“…This research, typically conducted with non-autistic college students, has found that greater knowledge of autism and high-quality personal connections with autism coincide with lower stigma toward autism (Nevill and White, 2011; Gardiner and Iarocci, 2014; Gillespie-Lynch et al, 2015; White et al, 2016). A much smaller but growing body of research has examined how autistic people think about autism, including their evaluations of how it is currently represented and researched (e.g., Kapp et al, 2013; Pellicano et al, 2014a,b; Jones et al, 2015; Kenny et al, 2016; Fletcher-Watson et al, 2017). The current study is the first to compare the degree to which autistic and non-autistic people agree with extant scientific knowledge about autism, how they define autism, and the degree to which they endorse stigmatizing conceptions of autism.…”

“…This study builds upon a small but growing body of research using online surveys to compare how autistic and non-autistic people with diverse relationships to autism view how autism is represented and researched (Kapp et al, 2013; Pellicano et al, 2014a,b; Kenny et al, 2016; Fletcher-Watson et al, 2017) by administering measures that have been used with diverse types of non-autistic people internationally (e.g., Obeid et al, 2015; Harrison et al, 2017) to both autistic and non-autistic people with diverse relationships to autism.…”

Autism spectrum disorder in sub‐saharan africa: A comprehensive scoping review

“…There have been investigations of family perspectives in various high‐income countries, including some recent surveys of UK families [Fletcher‐Watson et al, ].…”

Comparison of Parent Questionnaires, Examiner-Led Assessment and Parents’ Concerns at 14 Months of Age as Indicators of Later Diagnosis of Autism

“…We are using the term 'elevated likelihood' in place of the more commonly used term 'high risk' (HR) in response to parental preferences reported inFletcher-Watson et al (2017).…”