Pain in autistic children: Impact, development and evaluation of feeling better ASD pain management programme

Background. Autistic individuals often experience considerable challenges in communicating pain, which places them at heightened risk of under recognition and inadequate pain management. While self-report is regarded as the “gold standard” in pain assessment, this method is frequently unfeasible for autistic people with language, communication, or cognitive difficulties. Instead, pain may be expressed through a range of “atypical” behaviours, including self-injury (e.g., biting, head-hitting), aggression, irritability, low mood, appetite change, sleep disturbance, or reduced activity. These behavioural expressions not only complicate pain recognition but may also intensify distress and exacerbate the experience of pain itself. Importantly, an inability to verbally articulate pain does not indicate an absence of discomfort but rather highlights the need for adapted assessment and management strategies. The Feeling Better programme (McManus & McGuire, 2010), a cognitive-behavioural therapy (CBT) based intervention designed for paediatric pain, provides a promising foundation for adaptation to autistic populations. However, its acceptability, relevance, and efficacy for autistic children have not been systematically evaluated. Aims. This thesis sought to investigate pain in autistic children and to develop and pilot a tailored pain management intervention. Three studies were conducted, each addressing a specific aim. Study 1 examined the impact and burden of intermittent pain and chronic pain in autistic people and the relationship with behaviours that challenge based on caregiver report. Study 2 evaluated the acceptability, usability, and relevance of the Feeling Better programme for autistic children, using structured parental feedback to identify the necessary adaptations. Study 3 piloted the adapted Feeling Better ASD programme with autistic children aged 5–17 years who experienced intermittent or chronic pain. This pilot and feasibility study assessed a wide range of outcomes including pain communication, coping strategies, pain intensity and interference, overall well-being, parental protectiveness, parental catastrophising, adverse events, global impression of change, recruitment and retention, engagement, satisfaction, and treatment acceptability. Methods. Three studies were undertaken to investigate pain in autistic children, with the aim of examining in depth its impact and burden, while also informing the development of an inclusive pain management programme for autistic individuals with or without intellectual disability experiencing intermittent or chronic pain. In Study 1, caregiver report questionnaires were used to capture demographic details, frequency and location of pain, associated health problems, and the functional impact of pain, including its effects on mood, sleep, concentration, and behaviours that challenge. Caregivers also provided information on the involvement of autistic individuals in healthcare decision-making. Study 2 employed a qualitative research design. Semi-structured interviews were completed with each participant at four timepoints during the programme and upon completion of the programme. Their feedback was analysed using deductive thematic analysis to determine strengths and areas for adaptation, with a focus on inclusivity and accessibility for autistic children. Study 3 implemented a pilot feasibility trial of the Feeling Better ASD programme, comparing treatment and control condition groups. In addition to evaluating key clinical outcomes including pain communication, coping strategies, pain intensity, pain interference, overall well-being, parental protectiveness, parental pain catastrophising, adverse events, and global impression of change, the study also assessed feasibility indicators such as recruitment, retention, adherence, and parent satisfaction. Results. Findings from study 1 showed that pain is a prevalent and significant problem for autistic individuals with or without intellectual disability who require caregiver support. Pain was most reported in the abdomen, with gastrointestinal difficulties emerging as the most frequent health issue. Pain had wide ranging effects, interfering with sleep, concentration, and mood, and was often expressed behaviourally rather than verbally. Autistic individuals were also found to have limited involvement in decisions regarding their healthcare, highlighting the need for more inclusive practices. Study 2 identified that while the Feeling Better programme offered promise, several adaptations were necessary to ensure its suitability for autistic children. Four key themes were identified: (i) interaction, (ii) content, (iii) support, and (iv) appearance, informing the development of the Feeling Better ASD programme. Study 3 provided preliminary evidence of the programme’s effectiveness. Children in the treatment group demonstrated significant improvements in their ability to communicate the presence and location of pain and use of coping strategies compared to the control condition group. The study also showed that parents reported reductions in pain catastrophising and greater confidence in their child’s ability to manage their pain. High levels of engagement, satisfaction, and acceptability were reported, and no adverse events were identified, supporting the feasibility of delivering the programme to autistic children. Conclusion. This thesis advances understanding of pain among autistic individuals and demonstrates the importance of developing tailored interventions to address their unique needs. Findings confirm that pain is a widespread issue that is often under recognised due to communication challenges and reliance on behavioural indicators. Through systematic investigation, this research provided evidence for the relevance of a pain programme and directly contributed to the development and adaptation of the Feeling Better programme into Feeling Better ASD. The feasibility trial provided promising evidence of improved pain communication and coping among autistic children, alongside reductions in parental catastrophising and increases in parental confidence. Together, these findings provide evidence that access to a tailored behavioural pain management programme is both feasible and beneficial, offering a valuable step towards more inclusive and effective healthcare for autistic children with intermittent or chronic pain.

Funder

Department of Further and Higher Education, Research, Innovation and Science
Irish Pain Society
Psychological Society of Ireland

Publisher

University of Galway

Rights

CC BY-NC-ND

cbn

Collections

University of Galway Theses (PhD Theses)