Clinical Study

Patterns Of Social Media Use By Autistic Communities

Posted Date: Aug 30, 2022

  • Investigator: Al Lutwak
  • Specialties:
  • Type of Study: Observational/Survey

Introduction: The current body of research examining online autistic communities is large, spanning multiple disciplines and focuses, including the existence of online spaces for disabled people, autistic cultural or political issues, the self-diagnosis debate, and autistic burnout. Despite the breadth of collective content, there remains a dearth of literature that is not focused on a singular issue. As such, the scope of activity and its demographic interplay remains largely uncharacterized for the online autistic community, especially in the context of healthcare. As the medical field strives toward inclusivity, neurodivergent considerations in patient care must be re-examined with insights generated by communities themselves on approaching healthcare providers, the medical establishment, and medical bias. The purpose of this study is to generally characterize the online autistic community’s composition and online platform usage with particular emphasis on how a community that has been traditionally defined by medicalization approaches medical topics. Methods: This cross-sectional study on social media usage employs a semi-structured interview guide following Nothing About Us Without Us Principles. Following informed consent for each 1 to 1.5 hour interview, participants will discuss their social media usage in explicitly autistic online spaces, including the categorization of topics on the medical side of autism, social and nonmedical autistic experiences, and autism-unrelated conversations with other autistic individuals. Collected demographic information includes age, ethnicity, and diagnostic status. Study enrollment will run from August 2022 to April 2022. Immediately following data collection, all data will be de-identified for use in both bivariate and descriptive analyses and qualitative thematic analysis. Results: Pending data collection. Conclusion: Characterizing the online autistic community’s composition and online platform usage will challenge neurotypical biases in both the medical establishment and society at large, illuminating areas for meaningful change, especially in healthcare.


Eligible Participants Are Clinically Diagnosed Or Self-Identified Autistic/Autism Spectrum Disorder, English Speaking Or English Communicating, And Above The Age Of 10.


Autism, Online, Sociology

For More Information:

Al Lutwak

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