I didn\u27t want to say it\u27s a bad thing : Supporter Experiences with Autistic Patients in Healthcare

Background Due to the characteristic traits associated with autism, many autistic adults need the help of a supporter during healthcare events. No research has been done on the supporters of autistic adults and how they are making meaning from their experiences. Objective Investigating the experience of the supporters’ navigating negative healthcare events while supporting an autistic adult will assist in filling the gap and focus my research. Method I partnered with the community based participatory research (CBPR) group the Academic Autism Partnership in Research and Education (AASPIRE) and used a CBPR approach to conduct a qualitative latent thematic analysis. I extracted 16 semi-structured and open-ended supporter stories about negative experiences in healthcare settings from larger interviews, and analyzed them at a latent level. Triangulation verification was used as an inclusive CBPR process and involved three AASPIRE partners. Results We used 16 semi-structured interviews with supporter participants who had experience supporting autistic adults in healthcare settings. Latent themes extracted from supporter responses included the supporter advocating for the patient, the supporter knowing the patient, and the supporter minimization of the negative healthcare experience. Interplay between the themes led to discussion with AASPIRE community partners regarding the deficit framework the medical model takes on disability. Conclusion The presence of advocation for and knowing the patient on an intimate level influenced the frequency of minimization within the negative event. Minimization is a coping mechanism used to downplay negative affect or feelings of being overwhelmed. The medical model may be a driving force behind the use of minimization as a technique of reducing negative affect when coupled with the practice of dehumanization. Paid disability support staff should be required to become familiar with the autistic adult patient’s medical history and accommodations prior to the healthcare appointment. This allows for the supporter to know the patient and better advocate for them