Date Presented 03/28/20
This qualitative study explored autistic adults’ definitions and descriptions of resilience through an online survey of open-ended questions via Qualtrics. Autistic adults were recruited from closed, online Facebook communities and Internet forums of autistic adults. Qualitative data was analyzed using grounded theory until saturation was reached. Multiple researchers and data collection from multiple sources ensured rigor, triangulation, and trustworthiness of the data.
Primary Author and Speaker: Ashley Guy
Additional Authors and Speakers: Rachel Harrell, Evangelina Rivera, Barbara Kornblau, Debora Oliveira
Contributing Authors: Scott Robertson
PURPOSE: A study in the British Journal of General Practice described resilience as “the individual’s ability to adapt to and manage stress and adversity” (Lown, Lewith, Simon, & Peters, 2015). Resilience in the autistic community is defined as “Individuals who have a better than expected outcome in the face of adversity” (Szatmari, 2017). Common difficulties among autistic adults include difficulties understanding what others are thinking or feeling, getting anxious in social situations, difficulties expressing feelings, getting anxious if a routine is broken. Autistic adults are “thought to be at disproportionate risk of developing mental health comorbidities, with anxiety and depression being considered most prominent amongst thes.” (Hollocks, Lerh, Magiati, & Meiser- Stedman, 2018). This study provided autistic adults with a platform to define and describe what resilience means to them and provide health care professionals with a more holistic way to help autistic adults overcome barriers to participation.
DESIGN: This narrative qualitative study explored autistic adults’ definition and description of resilience, Autistic adults were recruited from closed, online, Facebook communities and Internet forums of autistic adults. Following approval by the IRB, a link to a Qualtrics survey was posted in the Internet groups. Inclusion criteria included individuals 18 and older who have been diagnosed with autism by a health care provider and/or who self-identify as being on the autism spectrum.
METHOD: Participants who followed the link to the Qualtrics survey acknowledged informed consent on the screen before taking the survey. Through the online survey via Qualtrics, participants responded to a series of seven open-ended about how the challenges they face, they define resilience, what resilience means to them, and how they cope to maintain resilience. Qualitative data was analyzed using content analysis until saturation was reached. Three researchers coded themes through an iterative, deductive process, and two experienced qualitative researchers, one of whom is a subject matter expert, reviewed developed themes and monitored saturation to ensure a comprehensive account of information, and analyzed content to ensure a consensus in interpretation of data. Multiple researchers and data collection from multiple sources ensured rigor, triangulation, and trustworthiness of the data.
RESULTS: 11 Participants completed the survey: Females=8 Males=3. Participants ranged from 18 – 56. Saturation was reached at between participant #2 and #9, depending on the question analyzed. This study shows that the voices of autistic adults express the importance of resilience in their lives and how it affects their quality of life and participation. Their voices express that the needs of autistic adults include addressing interpersonal skills and sensory issues, that continue into adulthood.
CONCLUSION: The voices of autistic adults point to a need for expanding occupational therapy intervention to meet the needs of autistic adults. Listening to the voices of autistic adults shows how occupational therapists need to focus on developing resilience in this population as a necessary intervention.
IMPACT STATEMENT: This study provides support for occupational therapy intervention with autistic adults. OT intervention to promote resilience can be a powerful tool in occupational therapy, recognizing that the need for OT intervention does not end merely because an autistic child becomes an autistic adult.
References
Hollocks, M.J., Lerh, J.W., Magiati, I., Meiser- Stedman, R., & Brugha, T. S.(2019). Anxiety and depression in adults with autism spectrum disorder: a systematic review and meta- analysis. Psychological Medicine, 49, 559-572
Lown, M., Lewith, G., Simon,C., & Peters, D.(2015) Resilience: What is it, why do we need it, and can it help us? British Journal of General Practice, 65(639)
Szatmari, P. (2017). Risk and resilience in autism spectrum disorder: a missed translational opportunity ? Developmental Medicine and Child Neurology, 60: 225-229
