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

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.

Should Autism Spectrum Conditions Be Characterised in a More Positive Way in Our Modern World?

“…Interestingly, the researchers also found that among all participants (both with and without ASC), an interest in curing autism was positively correlated with increased stigma towards people with the condition [23]. People with ASC tend to be more familiar with the DSM-V diagnostic criteria for 'Autism Spectrum Disorders' [2] than people without ASC [23]. Compared with people without ASC, people with ASC also more strongly disagree with the view that autism can be outgrown, and that people with autism are more violent than those without.…”

“…Compared with people without ASC, people with ASC also more strongly disagree with the view that autism can be outgrown, and that people with autism are more violent than those without. People with ASC are also more likely to agree with the view that people with autism have empathy [23].…”

“…Many people with Asperger syndrome perceive themselves as different but not necessarily disabled [22], and are more likely than people without ASC to view autism as a positive or neutral neural difference [23]. When comparing the views of people with and without ASC, Gillespie-Lynch et al [23] found that people with ASC described finding a cure as less important, and that many people with ASC did not view autism as a disease or disorder. Interestingly, the researchers also found that among all participants (both with and without ASC), an interest in curing autism was positively correlated with increased stigma towards people with the condition [23].…”

“…When comparing the views of people with and without ASC, Gillespie-Lynch et al [23] found that people with ASC described finding a cure as less important, and that many people with ASC did not view autism as a disease or disorder. Interestingly, the researchers also found that among all participants (both with and without ASC), an interest in curing autism was positively correlated with increased stigma towards people with the condition [23]. People with ASC tend to be more familiar with the DSM-V diagnostic criteria for 'Autism Spectrum Disorders' [2] than people without ASC [23].…”

Is disclosing an autism spectrum disorder in school associated with reduced stigmatization?

“…Indeed, some autistic people conceive of autism as a complex difference to support rather than cure, regarding autism as a positive identity (Kapp, Gillespie-Lynch, Sherman, & Hutman, 2013). Similarly, they are less interested in normalizing autism than non-autistic people, in association with their relatively low stigma towards autism (Gillespie-Lynch, Kapp, Brooks, Pickens, & Schwartzman, 2017).…”