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The International Association for the Study of Pain

Understanding and reducing pain and fear: Improving experiences for autistic youth and their families

Panel Discussion

Abstract Description

Guidelines exist on how to assess and manage pain in children but their appropriateness for and successful implementation with neurodiverse populations, including autistic youth, and their caregivers are less clear. What is clear is that youth with developmental disabilities frequently suffer from poorly recognized and managed pain; to improve the quality of life for these vulnerable youth, harnessing and supporting caregiver knowledge is critical. This talk will explore themes of knowledge, flexibility, and personalization cutting across several strands of research with primary and secondary caregivers of neurodiverse populations using both quantitative and qualitative methodologies. For example, rich qualitative interview data from caregivers of autistic youth about how to make needle procedures more comfortable and existing clinical practice guidelines more actionable for their families will be explored. Caregivers emphasized that their child should be treated as an autonomous individual and that what makes needle procedures difficult is more than solely the pain. In making clinical practice guideline recommendations more appropriate for autistic youth, caregivers described themselves as information hubs and the critical importance of tailoring strategies.

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