TY - JOUR
T1 - Community views of neurodiversity, models of disability and autism intervention: mixed methods reveal shared goals and key tensions
AU - Dwyer, Patrick
AU - Gurba, Ava N.
AU - Kapp, Steven Kenneth
AU - Kilgallon, Elizabeth
AU - Hersh, Lynnette
AU - Chang, David S.
AU - Rivera, Susan M.
AU - Gillespie-Lynch, Kristen
PY - 2024/9/18
Y1 - 2024/9/18
N2 - Controversies regarding the neurodiversity movement may be exacerbated by confusion over its meaning. For example, some suggest neurodiversity entails acceptance of the social model, whereas others describe it as more nuanced. We aimed to help resolve conflicting viewpoints by inviting insights from 504 autistic and autism community members (278 autistic, 226 non-autistic), including 100 researchers (41 autistic), 122 professionals (35 autistic) and 162 parents/caregivers (53 autistic). They rated the neurodiversity movement, social model, medical model and intervention goals, and answered open-ended questions regarding the meaning of neurodiversity, the neurodiversity movement and disability models. Neurodiversity movement support was associated with endorsing societal reform and making environments more supportive, and lower support for normalization and adaptive skill interventions, though teaching adaptive skills was widely supported overall. Although participants often suggested the social model attributes disability solely to society, this ‘strong’ view was not universal. ‘Strong’ social model supporters still endorsed some interventions targeting individuals’ characteristics (specifically, teaching adaptive skills, curing depression and epilepsy). Findings confirm that neurodiversity movement supporters denounce normalization, but are open to individualized supports. Findings highlight strong support for autistic leadership (especially among autistic people, including autistic parents) and for societal reform, and suggest that oversimplified rhetoric may cause confusion regarding advocates’ views.
AB - Controversies regarding the neurodiversity movement may be exacerbated by confusion over its meaning. For example, some suggest neurodiversity entails acceptance of the social model, whereas others describe it as more nuanced. We aimed to help resolve conflicting viewpoints by inviting insights from 504 autistic and autism community members (278 autistic, 226 non-autistic), including 100 researchers (41 autistic), 122 professionals (35 autistic) and 162 parents/caregivers (53 autistic). They rated the neurodiversity movement, social model, medical model and intervention goals, and answered open-ended questions regarding the meaning of neurodiversity, the neurodiversity movement and disability models. Neurodiversity movement support was associated with endorsing societal reform and making environments more supportive, and lower support for normalization and adaptive skill interventions, though teaching adaptive skills was widely supported overall. Although participants often suggested the social model attributes disability solely to society, this ‘strong’ view was not universal. ‘Strong’ social model supporters still endorsed some interventions targeting individuals’ characteristics (specifically, teaching adaptive skills, curing depression and epilepsy). Findings confirm that neurodiversity movement supporters denounce normalization, but are open to individualized supports. Findings highlight strong support for autistic leadership (especially among autistic people, including autistic parents) and for societal reform, and suggest that oversimplified rhetoric may cause confusion regarding advocates’ views.
KW - autism
KW - intervention goals
KW - neurodiversity
KW - normalization
KW - social model
U2 - 10.1177/13623613241273029
DO - 10.1177/13623613241273029
M3 - Article
SN - 1362-3613
JO - Autism
JF - Autism
ER -