Shifting the System: AASPIRE and the Loom of Science and Activism

Abstract

In 2006 Dora Raymaker, Autistic person and autistic rights activist, co-founded the Academic Autism Spectrum Partnership in Research and Education (AASPIRE) with Christina Nicolaidis, a physician-researcher and parent of an autistic child. AASPIRE works within the sphere of academic health and social services research to conduct projects the A/autistic community wants done. It endeavors to return power to communities that experience oppression to make their voices heard in research and policy settings. For example, its website autismandhealth.org offers resources for autistic adults, their supporters, and healthcare providers to improve the healthcare of autistic adults in the US. AASPIRE has served as a model for community-based participatory autism research, promoting the growth of participatory autism research internationally.

Annual Research Review: Shifting from ‘normal science’ to neurodiversity in autism science

“…Silberman, 2015), and in arguments about the nature of autism science itself (e.g. Milton, 2014a; Pellicano, 2020; Raymaker, 2020). It is also beginning to be reflected in academic discussions, with a flurry of review papers, perspective pieces and edited books published in the last 12 months alone (Bertilsdotter Rosqvist et al., 2020; Bölte, Lawson, Marschik, & Girdler, 2021; Davis & Crompton, 2021; Kapp, 2020; Leadbitter, Buckle, Ellis, & Dekker, 2021; Mitchell et al., 2021; Walker & Raymaker, 2020).…”

“…The neurodiversity paradigm responds to the apparent lack of alignment between the minds of autistic and nonautistic people by emphasising the importance of self‐determination and autonomy: autistic people must be involved in all decision‐making that stands to affect autistic people, from the highest levels of policy development to individual support planning; that is, they ‘deserve a full seat at the main table’ (Gernsbacher, 2007, p. 13). With this in mind, neurodiversity advocates assert that autism research and practice must be brought into line with the needs and priorities of the autistic and autism communities, taking a far broader perspective of what matters in autism research as a result (Milton, 2014b; Raymaker, 2020; Robertson, 2010). As discussed above, however, autism science has not, to date, been reflective of community priorities for research.…”

A Passing Problem: Evaluating Harm and Benefit in Autism Research

“…Second, the concerns raised here point to the importance of appropriate engagement of stakeholders in research design and review. The significance of inclusion and diverse membership is not a new insight; expectations of a diverse IRB membership have been part of the Common Rule since its inception, 56 and communities who often find themselves merely as subjects of research with inadequate representation in research design and infrastructure have long been advocates of community‐based participatory research 57 . IRBs may benefit from seeking the advice of community stakeholders when assessing outcome measures and interventions themselves for potential clinical passing demands.…”

“…The significance of inclusion and diverse membership is not a new insight; expectations of a diverse IRB membership have been part of the Common Rule since its inception, 56 and communities who often find themselves merely as subjects of research with inadequate representation in research design and infrastructure have long been advocates of communitybased participatory research. 57 IRBs may benefit from seeking the advice of community stakeholders when assessing outcome measures and interventions themselves for potential clinical passing demands. However, the framework we have proposed illustrates a further specific reason for ensuring direct participation from invested groups: to ensure better benefit assessment when attempting to determine the ethical appropriateness of the study.…”

An Expert Roundtable Discussion on Experiences of Autistic Autism Researchers

“…I see community-engaged research as a way of shifting the system. 13,14 I see it as a form of activism. I see elevating community voices in science and ensuring ''nothing about us without us'' in science as a part of all of that.…”