"I Just Want Them to See Me As…Me": Identity, Community, and Disclosure Practices Among College Students on the Autism Spectrum.

Abstract

The purpose of this project was to understand how college students on the autism spectrum integrate their diagnosis into their identity, whether they connect with a broader "autism community," and when and why they disclose their diagnosis to other people. Twenty participants completed semistructured interviews by phone, text message, or email. An inductive approach was used to generate codes, and results were synthesized via thematic analysis, theme counts, comparing and contrasting cases, and examining outliers. Across participants and interview topics, the students in our study expressed a desire to be understood and known genuinely by other people. Interviews revealed that autistic identity is complex and variable across individuals. Most of the students in our study did not feel part of a broader autism community, although several reported that some of their close friends were on the spectrum as well. Our participants rarely disclosed their autism to other people, and this decision was often informed by whether the disclosure would support or inhibit understanding. Results suggest there is a need for neurotypical people to be more accepting, affirming, and empathetic in their interactions with neurodivergent people. In addition, our results suggest that autistic college students may not participate in services that explicitly connect groups of students on the spectrum or require disclosure of their diagnosis. College students with autism should be involved in the development of college supports and services that are consistent with their values and disclosure practices. What was the purpose of this study?: The purpose of this study was to understand how autistic college students integrate autism into their identity, whether they feel a part of a larger "autism community" and when and why they tell other people that they have autism.What did the researchers do?: The researchers in this study interviewed 20 autistic college students. Interviews included several topics: (1) how autism fits into students' sense of identity, (2) whether they feel connected to an autism community, and (3) whether, when, and why the students tell others they are on the autism spectrum. Researchers read the interview transcripts and identified common themes based on what students said.What were the results of the study?: Overall, the college students in this study wanted to be genuinely understood by others. Some students identified strongly as autistic, whereas others felt it was not part of who they are. Most students in this study did not feel a part of a larger autism community, but several reported having friends on the spectrum. Most participants did not tell others about their autism diagnosis; however, they felt comfortable sharing this information with close friends, romantic partners, and school personnel. In general, decisions about disclosing (or not disclosing) were related to being understood by other people.What do these findings add to what was already known?: This study focused on the experience of autistic college students from their own perspective and discussed relationships between disclosure practices, autistic identity, and connection to autism communities in a way other studies had not done before. This study's findings suggest a need for neurotypical people to be more accepting, affirming, and empathetic toward people with autism. In addition, because college students on the autism spectrum may not use services that require disclosure of their diagnosis, colleges should allow autistic students to be involved in the development of services that meet this population's unique needs.What are potential weaknesses in the study?: This study only recruited participants from disability resource centers of colleges in the midwestern United States, so results may not apply to other people. Students who had not registered with disability services could not be contacted for participation in this study. Furthermore, most participants in this study were white men from families with a high level of education, so we have a limited ability to understand how being autistic might intersect with other facets of identity for members of other marginalized groups.How will these findings help autistic adults?: These findings help the autism community by informing the neurotypical population about the need to be more accepting of the unique perspectives of people on the autism spectrum. Although autism awareness in the United States has increased, our results suggest that awareness alone is not enough. Instead, our goal should be to promote acceptance, inclusion, and empowerment of autistic people.