Autistic Identity (or Lack Thereof) in High School and Undergraduate Students

Background: Traditionally, autism has been researched by professionals who lack the lived experience of being autistic. As a result, disseminated information is often considered incomplete or inaccurate by autistic individuals. Researchers, lay persons, and autistic individuals alike may benefit from listening to views of autistic people, bridging gaps in understanding (Nicolaidis, 2012). Many autistic scholars and researchers view autism as a form of diversity rather than pathology (Pellicano & Stears, 2011). Identification with the neurodiversity movement, which encourages acceptance of neurological conditions, is prevalent among autistic individuals recruited online (Kapp et al., 2013). Online samples of autistic people demonstrate higher knowledge of and report lower stigma toward autism than non-autistic people (Gillespie-Lynch et al., 2017). We wished to examine if autistic young people recruited in person have similarly positive viewpoints about autism.

Objectives: We, four autistic and four non-autistic researchers, conducted a participatory study examining disability identity among autistic high school and college students recruited in person.

Methods: Autistic students attending high school (n=17) or college (n=22) in a metropolis completed structured interviews and assessments. High school students were recruited from a technology-based summer camp. Undergraduates were recruited from a mentorship program at a public university. All participants were asked to define autism and describe how autism can make someone stronger. High school students were also asked to “describe yourself to someone who doesn’t know you”. Similarly, undergraduates were asked to describe themselves using only six words/concepts; they also completed the Reading the Mind in the Eyes task (assessing ToM; Baron-Cohen et al., 2001). Autistic researchers involved in a broader participatory initiative encouraged us to focus on disability identity (stating that it is the most interesting research focus) and helped develop coding schemes and code.

Results: Irrespective of developmental level, few participants used strength-based terms when defining autism; many more cited challenges, especially social difficulties (Table 1). When prompted to do so, many high school and college students identified strengths they associated with autism (often citing perseverance). Undergraduates who could not define autism when asked had lower ToM scores (p=0.04). Participants who used strength-based language to define autism also used agentic words when describing themselves more generally (p=0.006). Only one participant self-identified using an autism-related term (Table 2).

Conclusions: As hypothesized, autistic high school and undergraduate students recruited in person were less likely to endorse acceptance of neurological differences than online samples (e.g., Gillespie-Lynch et al., 2017). While 36% of participants in prior online research described autism as a neutral difference, less than 10% of the autistic youth recruited in person in this study described autism as a neutral difference. In fact, over 50% of the autistic high school students could not describe autism at all. Students who highlighted strengths associated with autism described themselves agentically, suggesting that neurodiversity-aligned viewpoints are empowering. Findings align with conjectures by an autistic researcher that autism understanding increases with development (Jones et al., 2013) and suggest that autism research should be conducted in person and online simultaneously to maximize generalizability of findings.