Abstract
Autistic and non-autistic adults’ agreement with scientific knowledge about autism, how they define autism, and their endorsement of stigmatizing conceptions of autism has not previously been examined. Using an online survey, we assessed autism knowledge and stigma among 636 adults with varied relationships to autism, including autistic people and nuclear family members. Autistic participants exhibited more scientifically based knowledge than others. They were more likely to describe autism experientially or as a neutral difference, and more often opposed the medical model. Autistic participants and family members reported lower stigma. Greater endorsement of the importance of normalizing autistic people was associated with heightened stigma. Findings suggest that autistic adults should be considered autism experts and involved as partners in autism research.
Highlights
Traditional expert knowledge of autism derives from observations by professionals who often lack the lived experience of being autistic1, whose understanding and acceptance of autism might increase by listening to autistic people (Nicolaidis, 2012)
This study demonstrates that autistic people should be considered “autism experts” as they often build upon insights derived from the lived experience of being autistic by researching autism systematically
As our participants were adults who were motivated to seek out dialog about autism by participating in an uncompensated online study, we do not suggest that all autistic people exhibit heightened factual knowledge about or reduced stigma toward autism
Summary
Traditional expert knowledge of autism derives from observations by professionals who often lack the lived experience of being autistic, whose understanding and acceptance of autism might increase by listening to autistic people (Nicolaidis, 2012). Based knowledge of autism has tended toward greater recognition of interpersonal and developmental capacities over time, such as the reclassification of the conception that the majority of autistic individuals have intellectual disability from accurate (Stone, 1987) to false (Gillespie-Lynch et al, 2015) on the Stone Autism Awareness questionnaire, a change assisted by autistic professionals who specialize in autism, such as researcher Michelle Dawson (Dawson et al, 2007). The deficit- and behavior-based diagnostic criteria for autism that anchor autism research and treatment continue to locate communication problems within the autistic person (American Psychiatric Association [APA], 2013) rather than examining how interpersonal interactions (De Jaegher, 2013) and societal factors (e.g., Kapp et al, 2013; Kenny et al, 2016) contribute to the challenges experienced by autistic people. That autistic adults would demonstrate greater awareness of scientific knowledge about autism and would describe autism in less stigmatizing ways than non-autistic people, is grounded in growing evidence that autistic people may often have enhanced understanding of fellow autistic individuals (e.g., Komeda, 2015) and resist medical constructions of autism (e.g., Kapp et al, 2013)
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