What Constitutes Autism Knowledge? Insights from Adults on the Autism Spectrum

Background:  

Despite growing recognition that autism research is more likely to be useful if autistic people and their family members are empowered participants in the process (e.g. Parsons, 2014; Robertson, 2010), a recent online survey revealed that autistic adults continue to feel that their voices are not heard (Pellicano et al., 2014). A key area wherein autistic people’s voices remain unheard is in defining what constitutes “knowledge” about autism. Although “autism knowledge” has been assessed among many different types of people around the world (e.g. Helps et al., 1999; Khatri et al., 2011), it has not previously been purposefully examined among those for whom it is most relevant—autistic people. Discrepancies between needed and received information about autism may contribute to lower Quality of Life (QoL) in autism (Renty and Roeyers, 2006).

Objectives:  

(1) Compare knowledge of and stigma toward autism among autistic adults (N=219), their nuclear family members (N=137), and the public (N=115); (2) Examine associations between knowledge, stigma and QoL; (3) Evaluate potential effects of an online-training on knowledge and stigma.

Methods:  

Participants were classified as autistic if they self-identified as autistic and exceeded the autism cut-off on the RAADS-14 (Eriksson et al., 2013). The pre-test/post-test included an adapted version of Stone’s (1987) Autism Awareness Survey, a social distance scale assessing stigma (Bogardus, 1933), and an opportunity to define ASD.  Open-ended definitions of ASD were coded by independent coders after they achieved reliability. Non-parametric tests were used. Except where p-values are stated, all reported results are significant at p≤.001.

Results:  

Autistic people (M = 18.53, SD = 4.73) had higher autism knowledge than the public (M = 14.88, SD = 6.04). Family members exhibited a trend toward heightened knowledge (M = 17.45, SD = 5.40) relative to the public (p = .002). Autistic people were more likely than the public to agree with statements that autistic people show affection and have empathy, and disagree that autistic people do not have attachments, that they can outgrow autism, and that they are violent. Autistic people’s definitions of ASD more often were internal, opposed to the medical model and/or described autism as a neutral difference relative to the public’s definitions.

Autistic people (M = 7.20, SD = 2.10) endorsed lower stigma toward autism than the public (M = 8.71, SD = 3.27). Family members exhibited a trend toward reduced stigma (M = 7.47, SD = 2.17) relative to the public (p = .002). Knowledge about autism correlated negatively with stigma across groups but neither knowledge nor stigma was associated with QoL (which was lowest among autistic participants). Participation in the training was associated with increases in knowledge for all groups.

Conclusions:  

This study suggests that autistic people should be considered “autism experts” and be involved as empowered collaborators in the research process. Although knowledge is not yet power for many autistic people, identifying how autistic people view autism is a crucial first step toward developing research that is relevant to the interests/needs of those whom the research is supposed to serve.