Pain in Autistic Children

Donaghy, B (2025) Pain in Autistic Children. Doctoral thesis, Liverpool John Moores University.

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Abstract

Autistic children and young people experience pain at an alarmingly high rate. For example, Autistic children and young people are twice as likely to experience pain than their non-Autistic peers and represent 14% of paediatric chronic pain in tertiary pain management settings. Despite this high pain prevalence, understanding of Autistic children and young people’s pain experiences remain sparse. Without this understanding, methods for addressing this health inequity cannot be implemented leaving a continually underserved population to be overlooked. To address this knowledge gap, the aim of this thesis was to examine factors which relate to Autistic children and young people’s pain experiences and expression. To study these factors a range of methods were used, including four interrelated studies co-produced with Autistic children and young people, and their caregivers.

An initial systematic review of 87 psychophysical studies aided the synthesis of an ethical protocol for assessing pain thresholds in paediatric populations (see Chapter 2). Findings highlighted that established adult psychophysical protocols are feasible in use when assessing pain in paediatric populations. However ethical considerations pertaining to diagnostic groups, and the number of pain modalities used should be considered when adapting to a paediatric design.

In practice, the protocol developed from the systematic review was used to assess differences in mechanical, pressure, and cold pain thresholds, cold pain tolerance and subsequent pain intensity ratings between 9 Autistic and 20 non-Autistic children and young people (see Chapter 3). Following removal of data from one non-Autistic young person who consistently met ceiling values, findings suggested pain experiences did not differ between diagnostic groups, but observed individual differences within groups reinforced the need to consider the subjective nature of Autistic pain experiences.

To understand subjective pain experiences further and identify potential influential factors of pain, 10 dyadic interviews with Autistic children and young people, and their caregiver were conducted (see Chapter 4). Amongst other psychological and cognitive components, interpersonal factors like trust appeared to act as a gatekeeper to Autistic children and young people disclosing pain.

Further understanding of intent to disclose pain to caregivers, teachers, and healthcare providers was developed using an online survey including caregivers of 64 Autistic and 80 caregivers of non-Autistic children and young people (see Chapter 5). Autistic children and young people were consistently less likely to disclose pain to teachers and healthcare providers with communicative and social expectations identified as influential to their intent to disclose.

Whilst findings cannot explain the high pain prevalence amongst Autistic children and young people explicitly, a need to shift focus from a hyposensitive pain profile and towards understanding subjective pain experience was emphasised. Future research should develop this understanding, particularly considering how interpersonal factors like previous experiences of bystanders disbelieving pain impact an Autistic child or young person’s behavioural intent to disclose pain. With this, guidance for teachers and healthcare providers in better supporting Autistic children and young people’s pain should be developed to ensure this population receives timely pain appraisal and management in all environments. Hopefully, this development would contribute to decreasing the alarmingly high pain rates amongst this population.

Item Type:	Thesis (Doctoral)
Uncontrolled Keywords:	Pain; Autism; Paediatric
Subjects:	B Philosophy. Psychology. Religion > BF Psychology
Divisions:	Psychology (from Sep 2019)
Date of acceptance:	15 May 2025
Date of first compliant Open Access:	23 June 2025
Date Deposited:	23 Jun 2025 10:12
Last Modified:	23 Jun 2025 10:12
DOI or ID number:	10.24377/LJMU.t.00026409
Supervisors:	Moore, D, Poole, H, Rosser, B and Failla, M
URI:	https://researchonline.ljmu.ac.uk/id/eprint/26409

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