How Autistic People Portray Autism on Youtube: Alternative Conceptions Trapped in a Digital Bubble

Background: Online communities can provide valuable supports for autistic individuals (Benford & Standen, 2009). Research on the video-sharing site YouTube suggests that the site may serve as a useful resource for parents of autistic individuals (Bokhari et al., 2014) and may serve as a forum for autistic individuals to challenge stigmatizing conceptions of autism. By posting YouTube content emphasizing neurodiversity, autistic individuals may counter mainstream media depictions of autism (Brownlow et al., 2013) and endorsements of the medical model that contribute to stigmatizing views about autism (Draaisma, 2009; Jones & Harwood, 2008; Sarrett, 2011), apparent worldwide (Gillespie-Lynch et al., 2017). However, YouTube may filter content to match users' preexisting views (e.g., a digital bubble; Pariser, 2011).

Objectives:

1. Use content analysis to discover how media creators on YouTube portray autism.
2. Investigate the merits of YouTube as a platform for the autistic community to challenge mainstream conceptions.

Methods: Four hundred YouTube videos about autism were collected using four related keywords: “Autism”, “Autistic”, “Aspergers”, and “Aspie”. The first 100 videos were collected for each query. We eliminated 32 duplicate videos, 14 that were irrelevant to autism, 58 in a foreign language, and 31 that were inaccessible. The remaining 265 videos were categorized in accordance with the content producer’s relation to autism (autistic individual, family member of an autistic individual, autism organization, or TV news-media broadcast). Videos were coded for: demographics, attitude towards autism, and purported nature of autism. We aimed to collect the four newest responses from each of the 25 most highly ranked videos in each category. Due to disabled comment sections, we collected 360 comments. The identity of commenters was coded into the following four categories according to self-identification: autistic individual, family member of autistic individual, professional/specialist, and other. Two independent coders achieved reliability > 80% for all coding categories on 20% of the sample.

Results: Utilizing nonparametric statistics, we found striking differences in the content of videos produced by autistic people or family members (see Table 1). Videos produced by autistic people highlighted coping mechanisms, while critiquing available supports. In contrast, videos produced by family members highlighted challenges associated with autism and endorsed available supports. Videos produced by autistic individuals received fewer views, likes, and dislikes relative to videos produced by others (ps <0.001). Videos produced by autistic individuals also tended to have more comments from other autistic individuals (p=0.021). In contrast, videos by family members of autistic individuals received more views and dislikes (ps<0.001), yet fewer comments from autistic individuals (p=0.027).

Conclusions:

Autistic people were more likely to present an alternative conception of their diagnosis and feature a more diverse portrayal of autism, but fail to reach many viewers. Family members, in contrast, were likely to present a mainstream conception and garner more views despite accruing more dislikes. Despite YouTube’s potential as a platform for autistic people to challenge misconceptions about autism (Brownlow et al., 2013), this study suggests that YouTube may create digital bubbles where autistic individuals challenge mainstream conceptions, yet struggle reaching viewers with different perspectives.