Abstract
Objective
Sensory elements are core features in chronic pain and autism, yet knowledge of the pain experience in autistic adolescents is limited. Little is known regarding how autistic adolescents experience chronic pain, manage their pain and perceive psychological treatment for their chronic pain.
Methods
Ten autistic adolescents (six female, three male, one self-identified as agender) with chronic pain and their mothers (n=10) participated in semi-structured interviews concerning their perceptions of living with chronic pain. Participants were recruited from UK pain management services. According to preference, interviews were conducted individually (n=10) or dyadically (n=10 participants across 5 dyads). Data were analysed using inductive reflexive thematic analysis.
Results
Two themes were generated. Theme one, ‘overstimulated and striving for control’ described how adolescents’ experience of heightened sensitivity enhanced adolescents’ levels of anxiety and subsequent pain, illustrating a reciprocal relationship between anxiety, pain and sensory elements. Theme two ‘not everyone fits the mould’ captured how autistic adolescents positioned themselves as distinct from others due to the unique nature of being autistic and living with pain. This sense of difference, negatively impacted adolescents’ ability to engage with, and benefit from standard treatment for chronic pain.
Conclusions
Findings suggest that autistic adolescents living with pain experience pain face barriers to effective pain treatment. Our results identify the need for educational resources to facilitate clinicians to better understand the experience of autistic adolescents living with pain. In turn, such understanding may improve treatment and outcomes in this population.
Sensory elements are core features in chronic pain and autism, yet knowledge of the pain experience in autistic adolescents is limited. Little is known regarding how autistic adolescents experience chronic pain, manage their pain and perceive psychological treatment for their chronic pain.
Methods
Ten autistic adolescents (six female, three male, one self-identified as agender) with chronic pain and their mothers (n=10) participated in semi-structured interviews concerning their perceptions of living with chronic pain. Participants were recruited from UK pain management services. According to preference, interviews were conducted individually (n=10) or dyadically (n=10 participants across 5 dyads). Data were analysed using inductive reflexive thematic analysis.
Results
Two themes were generated. Theme one, ‘overstimulated and striving for control’ described how adolescents’ experience of heightened sensitivity enhanced adolescents’ levels of anxiety and subsequent pain, illustrating a reciprocal relationship between anxiety, pain and sensory elements. Theme two ‘not everyone fits the mould’ captured how autistic adolescents positioned themselves as distinct from others due to the unique nature of being autistic and living with pain. This sense of difference, negatively impacted adolescents’ ability to engage with, and benefit from standard treatment for chronic pain.
Conclusions
Findings suggest that autistic adolescents living with pain experience pain face barriers to effective pain treatment. Our results identify the need for educational resources to facilitate clinicians to better understand the experience of autistic adolescents living with pain. In turn, such understanding may improve treatment and outcomes in this population.
| Original language | English |
|---|---|
| Journal | Journal of Pediatric Psychology |
| Volume | 49 |
| Issue number | 3 |
| Early online date | 7 Feb 2024 |
| DOIs | |
| Publication status | E-pub ahead of print - 7 Feb 2024 |
Bibliographical note
AJ, DM, EW, HC and JGG were in receipt of a Research Capacity Funding grant from the Royal United Hospitals Bath NHS Trust.Data Availability Statement
Data cannot be shared for ethical/privacy reasons.Keywords
- pain
- autism
- Adolescent
- parents
- maternal
- qualitative
- anxity
- sensory