289: Prevalence of Recurrent Pain in Australian Neurodiverse Youth: Evidence from a National Cohort
Topic: Clinical Science
Subtopic: Non-specific to any diagnosis, Epidemiology, Pain in special populations (e.g. neonates, children, teens, elderly, neurodegenerative diseases)
Background and Aims: Chronic pain affects 11–20% of adolescents and is linked to disability, school absence and mental health challenges. Neurodivergent youth, including those with autism or ADHD, experience chronic pain at nearly twice the rate of neurotypical peers (8.2% vs 15.6-19.9% in US data). Unique pain expression and communication differences create additional barriers to diagnosis and treatment, suggesting actual prevalence may even be higher. However, Australian-specific data remains limited. Understanding the prevalence of chronic pain in neurodiverse youth is essential for inclusive healthcare.
Methods: The study aimed to estimate the prevalence of chronic pain in neurodivergent youth, compared to neurotypical peers. It used cross-sectional data from 4961 Australian 18–20-year-olds, pulled from two cohorts in the Longitudinal Study of Australian Children (LSAC). Participants self-reported recurrent pain, autism, and/or ADHD, with neurodivergence defined as the presence of autism and/or ADHD. Descriptive statistics were used to examine prevalence rates as well as educational and emotional functioning and health-related comorbidities.
Results: Across cohorts, neurodivergent adolescents reported higher rates of recurrent pain than neurotypical peers (13–16 percentage points higher). Pain was elevated across most body sites, particularly headaches, back pain, musculoskeletal pain, and multiple pain types. Neurodivergent youth also had higher rates of anxiety and depression (18–36 percentage points) and greater psychological distress (higher K10 and PHQ-9 scores). Those with pain missed more school or work (2–13 additional days per year), with the greatest absenteeism observed among youth with co-occurring autism and ADHD.
Conclusions: Chronic pain appears more common among neurodivergent Australian youth, though at lower rates than international figures suggest. Neurodivergent adolescents experience higher rates of pain across multiple body sites, increased psychological distress, and greater school or work absenteeism compared to neurotypical peers. These findings highlight the importance of recognizing the unique pain and mental health challenges faced by neurodivergent youth. Further research is needed to provide updated prevalence estimates, explore underlying mechanisms, and inform inclusive, tailored healthcare approaches that address both physical and mental health needs in this population.
References: Amrhein, V., Greenland, S., & McShane, B. (2019). Scientists rise up against statistical significance. Nature, 567(7748), 305-307.
Arnold, S. R., Bruce, G., Weise, J., Mills, C. J., Trollor, J. N., & Coxon, K. (2024). Barriers to healthcare for Australian autistic adults. Autism, 28(2), 301-315. https://doi.org/10.1177/13623613231168444
Birnie, K. A., Hundert, A. S., Lalloo, C., Nguyen, C., & Stinson, J. N. (2019). Recommendations for selection of self-report pain intensity measures in children and adolescents: a systematic review and quality assessment of measurement properties. PAIN, 160(1), 5-18.
Chambers, C. T., Dol, J., Tutelman, P. R., Langley, C. L., Parker, J. A., Cormier, B. T., Macfarlane, G. J., Jones, G. T., Chapman, D., Proudfoot, N., Grant, A., & Marianayagam, J. (2024). The prevalence of chronic pain in children and adolescents: a systematic review update and meta-analysis. PAIN, 165(10), 2215-2234. https://doi.org/10.1097/j.pain.0000000000003267
Clarke, C. (2015). Autism Spectrum Disorder and Amplified Pain. Case Rep Psychiatry, 2015, 930874. https://doi.org/10.1155/2015/930874
Danielson, M. L., Claussen, A. H., Bitsko, R. H., Katz, S. M., Newsome, K., Blumberg, S. J., Kogan, M. D., & Ghandour, R. (2024). ADHD prevalence among US children and adolescents in 2022: diagnosis, severity, co-occurring disorders, and treatment. Journal of Clinical Child & Adolescent Psychology, 53(3), 343-360.
Gauntlett-Gilbert, J., & Eccleston, C. (2007). Disability in adolescents with chronic pain: Patterns and predictors across different domains of functioning. PAIN, 131(1-2), 132-141. https://doi.org/10.1016/j.pain.2006.12.021
Gobina, I., Villberg, J., Välimaa, R., Tynjälä, J., Whitehead, R., Cosma, A., Brooks, F., Cavallo, F., Ng, K., de Matos, M. G., & Villerusa, A. (2019). Prevalence of self-reported chronic pain among adolescents: Evidence from 42 countries and regions. Eur J Pain, 23(2), 316-326. https://doi.org/10.1002/ejp.1306
Gold, J. I., Yetwin, A. K., Mahrer, N. E., Carson, M. C., Griffin, A. T., Palmer, S. N., & Joseph, M. H. (2009). Pediatric chronic pain and health-related quality of life. Journal of pediatric nursing, 24(2), 141-150. https://doi.org/10.1016/j.pedn.2008.07.003
Government, A. (2025). National roadmap to improve the health and mental health of autistic people 2025–2035. Retrieved from https://www.health.gov.au/resources/publications/national-roadmap-autistic-people-2025-2035
Grimby-Ekman, A., Åberg, M., Torén, K., Brisman, J., Hagberg, M., & Kim, J. L. (2018). Pain could negatively affect school grades - Swedish middle school students with low school grades most affected. PLoS One, 13(12), e0208435. https://doi.org/10.1371/journal.pone.0208435
Han, G. T., Heavner, H. S., Rains, T. R., Hoang, A. H., & Stone, A. L. (2024). Chronic Pain in Autistic Youth: Clinical Prevalence and Reflections on Tailoring Evidence-Based Interventions from an Interdisciplinary Treatment Team. Children (Basel, Switzerland), 11(3), 312. Retrieved 2024/03//, from http://europepmc.org/abstract/MED/38539347
https://doi.org/10.3390/children11030312
https://europepmc.org/articles/PMC10968925
https://europepmc.org/articles/PMC10968925?pdf=render
Herbert, R. (2019). Research Note: Significance testing and hypothesis testing: meaningless, misleading and mostly unnecessary. Journal of Physiotherapy, 65(3), 178-181. https://doi.org/https://doi.org/10.1016/j.jphys.2019.05.001
Jordan, A., Parchment, A., Gauntlett-Gilbert, J., Jones, A., Donaghy, B., Wainwright, E., Connell, H., Walden, J., & Moore, D. J. (2024). Understanding the impacts of chronic pain on autistic adolescents and effective pain management: a reflexive thematic analysis adolescent-maternal dyadic study. J Pediatr Psychol, 49(3), 185-194. https://doi.org/10.1093/jpepsy/jsae004
Kallogjeri, D., Spitznagel, E. L., Jr, & Piccirillo, J. F. (2020). Importance of Defining and Interpreting a Clinically Meaningful Difference in Clinical Research. JAMA Otolaryngology–Head & Neck Surgery, 146(2), 101-102. https://doi.org/10.1001/jamaoto.2019.3744
Kazda, L., McGeechan, K., Bell, K., Thomas, R., & Barratt, A. (2022). Association of Attention-Deficit/Hyperactivity Disorder Diagnosis With Adolescent Quality of Life. JAMA Netw Open, 5(10), e2236364. https://doi.org/10.1001/jamanetworkopen.2022.36364
Kuja-Halkola, R., Lichtenstein, P., D'Onofrio, B. M., & Larsson, H. (2015). Codevelopment of ADHD and externalizing behavior from childhood to adulthood. J Child Psychol Psychiatry, 56(6), 640-647. https://doi.org/10.1111/jcpp.12340
Lipsker, C. W., Bölte, S., Hirvikoski, T., Lekander, M., Holmström, L., & Wicksell, R. K. (2018). Prevalence of autism traits and attention-deficit hyperactivity disorder symptoms in a clinical sample of children and adolescents with chronic pain. J Pain Res, 11, 2827-2836. https://doi.org/10.2147/jpr.S177534
Liu, J., Chen, L. L., Shen, S., Mao, J., Lopes, M., Liu, S., & Kong, X. (2020). Challenges in the Diagnosis and Management of Pain in Individuals with Autism Spectrum Disorder. Review Journal of Autism and Developmental Disorders, 7(4), 352-363. https://doi.org/10.1007/s40489-020-00199-7
Logan, D. E., Gray, L. S., Iversen, C. N., & Kim, S. (2017). School Self-Concept in Adolescents With Chronic Pain. Journal of Pediatric Psychology, 42(8), 892-901. https://doi.org/10.1093/jpepsy/jsx063
Maenner, M. J. (2023). Prevalence and characteristics of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 sites, United States, 2020. MMWR. Surveillance Summaries, 72.
Maes, M., Van den Noortgate, W., Fustolo-Gunnink, S. F., Rassart, J., Luyckx, K., & Goossens, L. (2017). Loneliness in Children and Adolescents With Chronic Physical Conditions: A Meta-Analysis. J Pediatr Psychol, 42(6), 622-635. https://doi.org/10.1093/jpepsy/jsx046
Mahjoob, M., Cardy, R., Penner, M., Anagnostou, E., Andrade, B. F., Crosbie, J., Kelley, E., Ayub, M., Ayub, M., & Brian, J. (2024). Predictors of health-related quality of life for children with neurodevelopmental conditions. Scientific Reports, 14(1), 6377.
May, T., Brignell, A., & Williams, K. (2020). Autism Spectrum Disorder Prevalence in Children Aged 12–13 Years From the Longitudinal Study of Australian Children. Autism Research, 13(5), 821-827. https://doi.org/https://doi.org/10.1002/aur.2286
Medicine, I. o. (2011). The National Academies Collection: Reports funded by National Institutes of Health. In Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research. National Academies Press (US)
Copyright © 2011, National Academy of Sciences. https://doi.org/10.17226/13172
Mohal, J., Lansangan, C., Gasser, C., Howell, L., Duffy, J., Renda, J., Scovelle, A., Jessup, K., Daraganova, G., & Mundy, L. (2023). Growing Up in Australia: The Longitudinal Study of Australian Children-Data User Guide (https://doi.org/doi:10.26193/QR4L6Q
Murray, C. B., de la Vega, R., Murphy, L. K., Kashikar-Zuck, S., & Palermo, T. M. (2022). The prevalence of chronic pain in young adults: a systematic review and meta-analysis. PAIN, 163(9), e972-e984. https://doi.org/10.1097/j.pain.0000000000002541
Organisation, W. H. (2020). Guidelines on the management of chronic pain in children (Genova Issue.
Piccirillo, J. F. (2016). Improving the Quality of the Reporting of Research Results. JAMA Otolaryngology–Head & Neck Surgery, 142(10), 937-939. https://doi.org/10.1001/jamaoto.2016.2670
Randall, M., Sciberras, E., Brignell, A., Ihsen, E., Efron, D., Dissanayake, C., & Williams, K. (2016). Autism spectrum disorder: Presentation and prevalence in a nationally representative Australian sample. Australian & New Zealand Journal of Psychiatry, 50(3), 243-253. https://doi.org/10.1177/0004867415595287
Santos, V. S., de Melo do Espirito Santo, C., Castro, E. S. T. F., de Jesus-Moraleida, F. R., Williams, C., Kamper, S. J., Miyamoto, G. C., & Yamato, T. P. (2024). Costs of Disabling Musculoskeletal Pain in Children and Adolescents: A Cost-of-Illness Prospective Cohort Study. J Orthop Sports Phys Ther, 54(12), 766-775. https://doi.org/10.2519/jospt.2024.12735
Shelby, G. D., Shirkey, K. C., Sherman, A. L., Beck, J. E., Haman, K., Shears, A. R., Horst, S. N., Smith, C. A., Garber, J., & Walker, L. S. (2013). Functional abdominal pain in childhood and long-term vulnerability to anxiety disorders. Pediatrics, 132(3), 475-482. https://doi.org/10.1542/peds.2012-2191
Simons, L. E., Sieberg, C. B., & Claar, R. L. (2012). Anxiety and impairment in a large sample of children and adolescents with chronic pain. Pain Res Manag, 17(2), 93-97. https://doi.org/10.1155/2012/420676
Solomon, M., Miller, M., Taylor, S. L., Hinshaw, S. P., & Carter, C. S. (2012). Autism symptoms and internalizing psychopathology in girls and boys with autism spectrum disorders. J Autism Dev Disord, 42(1), 48-59. https://doi.org/10.1007/s10803-011-1215-z
Taghizadeh, N., Heard, G., Davidson, A., Williams, K., & Story, D. (2019). The experiences of children with autism spectrum disorder, their caregivers and health care providers during day procedure: A mixed methods study. Pediatric Anesthesia, 29(9), 927-937. https://doi.org/https://doi.org/10.1111/pan.13689
team, A. B. o. S. L. p. t. A. B. o. S. H. S. M. (2020). The Longitudinal Study of Australian Children: LSAC Technical Paper No. 24, Wave 8 weighting and non‑response. Australian Institute of Family Studies.
Wager, J., Brown, D., Kupitz, A., Rosenthal, N., & Zernikow, B. (2020). Prevalence and associated psychosocial and health factors of chronic pain in adolescents: Differences by sex and age. European Journal of Pain, 24(4), 761-772. https://doi.org/https://doi.org/10.1002/ejp.1526
Wasserstein, R. L., & Lazar, N. A. (2016). The ASA Statement on p-Values: Context, Process, and Purpose. The American Statistician, 70(2), 129-133. https://doi.org/10.1080/00031305.2016.1154108
Whitney, D. G., & Shapiro, D. N. (2019). National Prevalence of Pain Among Children and Adolescents With Autism Spectrum Disorders. JAMA Pediatrics, 173(12), 1203-1205. https://doi.org/10.1001/jamapediatrics.2019.3826
Zendarski, N., Guo, S., Sciberras, E., Efron, D., Quach, J., Winter, L., Bisset, M., Middeldorp, C. M., & Coghill, D. (2022). Examining the Educational Gap for Children with ADHD and Subthreshold ADHD. Journal of Attention Disorders, 26(2), 282-295. https://doi.org/10.1177/1087054720972790
Presenting Author: Payton Soussa
Submitting Author: Payton Soussa
Senior Author: Professor Steve Kamper
IASP 2026 Global Year theme of Neuropathic Pain: No
Co-Authors:
- Dr Tie Yamato: PhD - The University of Sydney
- Professor Steve Kamper: PhD - The University of Sydney
- Dr Kelsie Boulton: PhD - The University of Sydney
- Sarah Kilgour: MPsyc(Clin) - The University of Sydney
- Dr Laura Montgomery: PhD - The University of Sydney
Prevalence of Recurrent Pain in Australian Neurodiverse Youth: Evidence from a National Cohort
Category
Poster
Description
Session Type: Posters
Room: Exhibit Hall EH102-103
27/10/2026
03:15 PM - 04:45 PM