Chronic pain and ASD in children/adolescence
Research type
Research Study
Full title
Chronic pain in ASD: An exploration of the experience of diagnosis, treatment and outcomes
IRAS ID
279953
Contact name
Abbie Jordan
Contact email
Sponsor organisation
The University of Bath
Duration of Study in the UK
0 years, 9 months, 1 days
Research summary
Summary of Research
Research suggests that 14% of young chronic pain patients also have autism, which is particularly concerning as many aspects of chronic pain management involve talking therapies and group activities. These approaches may be differently effective in this population.
There is a lack of research into how autistic people experience and communicate their chronic pain. This study addresses this gap by exploring the pain experience of autistic individuals and their word choices in describing their pain sensations. This will also help us to understand the barriers to pain management in autism and potential directions for treatment.
Overall, this study aims to:
1) Explore how young people with co-occurring chronic pain and Autism Spectrum Disorder (ASD) perceive, understand and experience pain
2) Explore how parents of young people with co-occurring chronic pain and ASD perceive, understand and experience their child’s pain
3) Explore the treatment journey of young people with co-occurring pain and ASD
4) Examine the relationship between features of ASD and treatment outcomes of young people with chronic pain
5) Provide recommendations for best practice in paediatric pain management for ASD.Participants will be approached through the Bath Centre for Pain Services (BCPS), and following consent, will be interviewed in person or via telephone or skype as appropriate. These interviews will ask them about all aspects of their experience of pain, how they communicate regarding their pain, and their treatment journey. This study will also analyse anonymised data from the BCPS research database, a database of clinical assessment data collected pre-treatment, post-treatment, and at follow up. This analysis will compare the outcomes for patients who have ASD to non-ASD controls.
Summary of Results
We found that adolescents living with autism and chronic pain perceived a unique sense of double 'difference' from other young people. Specifically, adolescents and parents described how autistic adolescents both felt different from their same age peers but also from similarly aged adolescents living with chronic pain but not autism. This sense of 'double difference' was isolating. Additionally, our findings showed how autistic adolescents reported a complex relationship between their experience of sensory sensitivities associated with living with autism, pain and anxiety, with all three factors influencing each other. This meant that autistic adolescents experienced additional challenges with communicating pain to others and also engaging with and effective pain management strategies.REC name
North West - Preston Research Ethics Committee
REC reference
20/NW/0296
Date of REC Opinion
7 Aug 2020
REC opinion
Further Information Favourable Opinion