Date Presented 03/27/20
This qualitative study explored perceptions of pain by autistic adults through an online survey of open-ended questions via Qualtrics. Autistic adults were recruited from four Internet support communities. Qualitative data was analyzed using grounded theory coding methods until saturation was reached. Multiple researchers and data from multiple sources ensured rigor, trustworthiness, and triangulation. This study provides pain-perception consideration for the treatment of autistic adults.
Primary Author and Speaker: Barbara Kornblau
Additional Authors and Speakers: Aurelia Alexander
Contributing Authors: Scott Robertson, Sarah Mbiza, Saint-Claire Mottley, Heaven Clark, Kahler Lang
PURPOSE: Pain and its treatment is a significant, contemporary, public health issue. This qualitative study listened to the voices of autistic adults to explore how they experience, perceive, and respond to pain. Its purpose was to provide a deeper understanding of the educational steps one may take to increase quality of life for autistic adults. Knowledge gained from autistic adults about how they perceive pain, can help to improve and construct occupational therapy interventions that encourage participation and improve everyday functioning for autistic adults who experience pain and promote health behaviors to prevent and manage chronic pain.
DESIGN: This grounded theory, qualitative study explored perceptions of pain by autistic adults. Following Institutional Review Board approval, and permission from group administrators, participants, were recruited from Twitter, 3 closed Facebook communities for autistic adults, and two Internet communities called Autistic Adults and Autistics Worldwide. The recruitment message directed participants to the survey’s link housed on Qualtrics. Inclusion criteria specified autistic adults who had been diagnosed on the autism spectrum by a health care professional, being age 18+ years and U.S. residence. The recruitment message directed participants provided a link to an online survey.
METHOD: Participants recruited from the online sources were presented with a link to an online survey of open-ended questions using Qualtrics. The survey of open-ended questions asked participants about how they perceived pain and the type of stimuli that cause pain, including sensory input and a variety of other environmental experiences. Qualitative data was analyzed by multiple researchers, using multiple levels of coding, until saturation was reached. Multiple researchers sharing coding tasks and data collections from multiple sources ensured triangulation, rigor, and trustworthiness of the data.
RESULTS: A total of 32 participants met the inclusion criteria and completed the survey. Saturation was reach at #16. Participant included 23 females, 3 males, 2 transsexuals, 1 intersexual, 1 preferred not to report, and 2 selected other. 40.6 % of participants were ages 26-35, 21.9% were ages 18-28, 21.9% were ages 36-45, 12.5% were ages 46-55, and one participant was age 56 and up. Many participants live with comorbid conditions, such as sensory processing disorders, fibromyalgia, and arthritis. Some autistic adults reported hyposensitive reactions to physical pain, while others reported hypersensitive reactions. A particular finding of interest was that some autistic adults reported feeling pain from common sensory experiences, such as touch, or visual experiences such as seeing potted plant broken in a storm, that neurotypical adults may not feel.
CONCLUSION: Autistic adults often feel pain in ways different from neurotypical adults and from stimuli that may not cause pain in neurotypical adults. The pain autistic adults feel can hinder their participation in daily occupations, and put their safety at risk, pointing to an area of need for occupational therapy intervention.
IMPACT STATEMENT: The voices of autistic adults demonstrate a significant need for OTs to address the occupational, participation, and safety needs of autistic adults, who experience pain in unexpected, atypical ways, and reminds us that the occupational needs of autistic people in pain continue
References
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