RESUMO
Background: Professional interventions for autistic people often encourage the development of neurotypical behavior. However, the pressure to appear or behave neurotypically has been associated with negative mental health outcomes. Consequently, autistic perspectives on the concept of neurotypicality are a critical area for empirical research. As a follow-up to a prior study on perceptions of autism, the present study examined the concept of neurotypicality as represented in 39 online video logs authored by YouTubers who self-identified as autistic. The study aimed to understand autistic perspectives on neurotypicality to guide professional service provision toward practices that support overall well-being. Methods: Consistent with procedures frequently implemented within narrative inquiry, we identified three exemplary videos that presented salient and consistent narratives about neurotypicality. We submitted transcripts of these three videos to inductive thematic analysis to establish their distinctive features and hence the features of the narratives they embodied. Afterward, we used the distinctive features of the exemplary videos to deductively analyze the remaining 36 videos in the data set. Findings: The three exemplary videos presented features that related to three divergent narratives about neurotypicality that were supported by the data set as a whole: neurotypicality as (1) an achievement; (2) a masquerade; and (3) a curse. These three narratives differed sharply in regard to the desirability and feasibility of neurotypical conduct. Across all narratives, neurotypical behavior was associated with significant effort. Conclusions: Implications for professionals serving the autism community include the need to be prepared to offer clients different narratives about neurotypical behavior, as presented in writings and media authored by autistic individuals. A second implication concerns the need to align intervention and educational goals with a client's views and values. Finally, independent of the goals established between professionals and clients, the former must monitor the stress and effort associated with the enactment of neurotypicality and make changes accordingly. Lay summary: Why was this study done?: Professionals often want to help autistic clients to behave like people who are not autistic (often called neurotypicals). However, we do not know much about how people on the autism spectrum feel about the idea of neurotypicality. In this study, we analyzed 39 videos from YouTubers who identified as autistic to learn more about what they think of neurotypicality.What was the purpose of this study?: Our goal was to learn directly from autistic individuals and to help professionals (e.g., psychologists and speech-language therapists) to provide better services to the autistic community.What did the researchers do?: We chose three of the videos that were good examples of different ways of thinking about neurotypicality. We analyzed the three videos to identify their unique features. Then we identified examples of those features in the other 36 videos in our data set.What were the results of the study?: We identified three ways of thinking about neurotypicality: neurotypicality as (1) an achievement; (2) a masquerade or theatrical performance; and (3) a curse. These ways of thinking about neurotypicality differed mostly in regard to the extent to which neurotypicality was desired and considered possible. A shared characteristic was that neurotypical behavior required a lot of effort from autistic individuals.What do these findings add to what was already known?: The findings of our study highlight the effort associated with neurotypical behavior and the connection between neurotypical behavior and mental health. The study can help professionals to better understand what behaving neurotypically feels like for autistic individuals. It also has the potential to increase discussions about neurotypicality by amplifying the autistic voices that are still underrepresented in scientific studies.What are potential weaknesses in the study?: The ways of thinking about neurotypicality that we identified in our data may not be representative of all the autistic community because most of the vloggers in our data were white males who identified with Asperger's syndrome. Also, our study included only videos recorded in English and uploaded to YouTubeTM between 2005 and 2015. Future studies should include individuals from all areas of the autism spectrum and more recent data presented in more varied formats and languages.How will these findings help autistic adults now or in the future?: The findings of our study suggest that professionals who serve the autistic community should be able to share with others different views of neurotypicality, help clients work toward goals that are important to them, and monitor signs of stress caused by the effort to behave neurotypically. This should in turn positively impact the quality of services provided to the autistic community and with it the overall well-being of people on the autism spectrum.
