Including Speaking and Nonspeaking Autistic Voice in Research

Abstract

Autistic individuals frequently report that their experiences are minimized or reinterpreted by well-meaning nonautistic parents, researchers, educators, and allies. Although the inclusion of autistic voice is improving, obstacles persist, particularly in research with individuals who might be described as non-or minimally speaking. In this perspective piece, I present three arguments: (1) ableist assumptions and practices that equate speaking voice with rational voice have led to the exclusion of autistic voice in research; (2) technologies such as augmentative and alternative communication, including computers and tablets, can be both emancipatory and oppressive; and (3) researchers who commit to the practice of ethical listening improve opportunities for non-or minimally speaking autistic individuals to participate in research.

“We are the stakeholders with the most at stake”: scientific and autism community co-researchers reflect on their collaborative experience in the CONNECT project

“…The project was not without its challenges and both the patient partners and the research management team identified several key areas in need of improvement, reassessment and reexamination. Future collaborative research initiatives need to adopt more flexible and inclusive practices so that adults from across the autism spectrum can be truly involved and engaged in research, and have their voices and perspectives heard [60]. Nevertheless, in remaining faithful to POR's core principles, the CONNECT model proved its potential to make research more accessible and more relevant to members of the autistic adult community.…”

In silico Gene Set and Pathway Enrichment Analyses Highlight Involvement of Ion Transport in Cholinergic Pathways in Autism: Rationale for Nutritional Intervention

“…The research and development which is required to determine targeted, effective ways for elevating choline consumption and identifying personalized intake baselines sufficient for fulfilling physiological need for choline in this population is considerable. As with any autism research, investigations should purposefully include representatives and researchers with an autism diagnosis who can help to shape such interventions optimally for autistic children and adults (Chown et al, 2017;Hoekstra et al, 2018;Lebenhagen, 2019;Cascio et al, 2020;Hogan et al, 2020).…”

Participatory Autism Research: How Consultation Benefits Everyone

“…Although there is increasing community involvement in research, autistic individuals with communication differences, such as those who are non-speaking or minimally-speaking (Lebenhagen, 2020 ) and those with a learning disability (Long and Clarkson, 2017 ) are less well-represented in this movement (e.g., in Fletcher-Watson et al, 2019 ; Pavlopoulou, 2020 and Cassidy et al, 2021b , the authors noted that their projects were not fully inclusive of these individuals). Importantly, people with communication differences may require personalized support, unique modes of communication, and well-planned engagement for their voices to be heard (Long and Clarkson, 2017 ; Long et al, 2017 ; Lebenhagen, 2020 ). Without the use of these personalized approaches, communication differences can result in autistic people facing exclusion from processes of consultation and research (Long and Clarkson, 2017 ) due to communicative normativity (see Lebenhagen, 2020 ).…”

“…Importantly, people with communication differences may require personalized support, unique modes of communication, and well-planned engagement for their voices to be heard (Long and Clarkson, 2017 ; Long et al, 2017 ; Lebenhagen, 2020 ). Without the use of these personalized approaches, communication differences can result in autistic people facing exclusion from processes of consultation and research (Long and Clarkson, 2017 ) due to communicative normativity (see Lebenhagen, 2020 ).…”