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Call For Papers

Special Issue of AJIDD

 

Call for Letters of Intent:
Pain and Intellectual and Developmental Disabilities

 

Guest Editor

David Moore, PhD, Liverpool John Moores University, United Kingdom

 

AJIDD cover

Background

Individuals with intellectual disability, other developmental disabilities, and related genetic syndromes (jointly, IDD) are a risk for pain being ignored or misunderstood. New insights are emerging about the etiologies of pain in conditions including, but not restricted to, cerebral palsy, neurodivergent conditions, Down syndrome, fragile-X syndrome, fetal alcohol spectrum disorder (FASD), neurofibromatosis and Prader-Willi syndrome. The special issue aims to advance the understanding and treatment of pain specific to individuals with IDD. 

Pain assessment and management is an especially complex task in individuals with IDD and motor, sensory, and/or communicative impairments. There is reason to suspect that individuals with IDD experience a great deal of pain from multiple sources. For example, individuals with IDD tend to have multiple chronic painful conditions associated with their disability (e.g., constipation, scoliosis, spasticity) and experience more surgeries and painful procedures to manage the disability (Finlayson, et al., 2010; Walsh, Morrison, & McGuire, 2011; Boerlage, et al., 2013). 1 The lack of knowledge in the field about pain in this population is concerning, as pain may be the first or only sign of illness or injury.

Compounding the issue, individuals with IDD often have challenges in communication, making self-report of pain difficult and sometimes impossible, which may be exacerbated when healthcare providers do not know how to talk to patients with IDD about their symptoms. Further, individuals with IDD may be less able to effectively cope with pain and care for themselves when in pain, rendering them highly vulnerable. Clinicians often have little expertise in identifying and treating pain in this complex population and may be hesitant to provide treatment, especially when the patient is already taking other medications. Studies report that when individuals with IDD do receive pain management, they are prescribed with significantly less analgesic medications and receive smaller doses as compared to their non-disabled peers (Boerlage, et al., 2013; Malviya, et al, 2001; Koh, 2004). The lack of pharmacokinetic and pharmacodynamics data in this population further complicates pain management. Finally, there is some evidence that individuals with neurodevelopmental disabilities may actually be more sensitive to pain than their peers (Defrin, et al., 2004; Riquelme & Montoya, 2010; Valkenburg, Tibboel, & van Dijk, 2015; Benromano, 2017) . This is especially troubling when a persisting belief among clinicians and caregivers holds that individuals with IDD are less sensitive or indifferent to pain (Biersdorff, 1994; Hennequin, Morin, & Feine, 2000). 

An erroneous belief in a higher pain threshold, along with their increased risk for pain and communication challenges, put individuals with IDD at risk for having pain that is undetected and unmanaged. In extreme cases, its likely that higher and unnecessary rates of death among individuals with IDD could have been prevented if their pain had been  adequately identified and treated in time (Jancar & Speller, 1994; Mencap, 2007).

The pain experienced by people with IDD might be even greater when we consider chronic pain conditions. Here there are well established links between neurodivergent conditions and centralizing sensitivity syndromes (Grant, et al., 2022), and with chronic/ongoing pain in the population with autism (Whitney & Shapiro, 2019).15 Such over representations are even greater when one considers those accessing complex chronic pain services, of which 25%–30% of patients appear to be neurodivergent (Lipsker, et al., 2018; Moore, 2025). Although individuals with IDD may benefit from generic pain management, there appears to be barriers in accessing these treatments (Moore, 2025). 

Providing successful pain management requires the measurement of pain, with verbal report being its gold standard. The cognitive and communication limitations of people with IDD can present clinicians with challenges in identifying the presence, diagnosing the source,  and evaluating the magnitude of their pain and suffering. Assessment methods that do not rely on self-report are subject to problematic biases, especially in the assessment of  individuals with IDD (Craig, Korol, & Pillai, 2022; Breau, 2003). Furthermore, individuals with IDD may present atypical behaviours, such as self-injury (Summers, et al., 2017) that further complicate the evaluation of their condition. The search for additional pain assessment methods for this population is thus crucial. 

Given these serious issues complicating the pain assessment and management of this vulnerable population, it seems warranted to organize a specific special issue focused on addressing the problems of pain in individuals with IDD by providing the field an update on current research and findings. 

 

 

References

Benromano, T., Pick, C. G., Merick, J., & Defrin, R. (2017). Physiological and behavioral responses to calibrated noxious stimuli among individuals with cerebral palsy and intellectual disability. Pain Medicine, 18:441-453. https://doi.org/10.1093/pm/pnw155

 

Biersdorff K. K. (1994). Incidence of significantly altered pain experience among individuals with developmental disabilities. American Journal on Mental Retardation,  98:619–31.

 

Boerlage, A. A., Valkenburg, A. J., Scherder, E.J., Steenhof, G., Effing, P,, Tibboel, D., & van Dijk, M. (2013). Prevalence of pain in institutionalized adults with intellectual disabilities: a cross-sectional approach. Research in Developmental Disabilities,34:2399–406. https://doi.org/10.1016/j.ridd.2013.04.011

 

Breau, L. M., MacLaren, J., McGrath, P.J., Camfield, C.S., & Finley, G.A. (2003). Caregivers' beliefs regarding pain in children with cognitive impairment: Relation between pain sensation and reaction increases with severity of impairment. The Clinical Journal of Pain, 19:335-44. https://doi.org/10.1097/00002508-200311000-00001

 

Craig, K. D., Korol, C.T., & Pillai, R. R. (2022). Challenges of judging pain in vulnerable infants. Clinics in Perinatology, 29:445–57. https://doi.org/10.1016/s0095-5108(02)00022-2

 

Defrin, R., Pick, C.G., Peretz, C., & Carmeli, E. (2004). A quantitative somatosensory testing of pain threshold in individuals with mental retardation. Pain, 108:58–66. 10.1016/j.pain.2003.12.003

 

Finlayson, J., Morrison, J., Jackson, A., Mantry, D,, & Cooper S.-A. (2010). Injuries, falls and accidents among adults with intellectual disabilities: Prospective cohort study. Journal of Intellectual Disability Research;54:966-80. https://doi.org/10.1111/j.1365-2788.2010.01319.x

 

Grant, S., Norton, S., Weiland, R. F., Scheeren, A. M., Begeer, S., & Hoekstra, R. A. (2022). Autism and chronic ill health: an observational study of symptoms and diagnoses of central sensitivity syndromes in autistic adults. Molecular Autism, 13(1):7. https://doi.org/10.1186/s13229-022-00486-6

 

Hennequin, M., Morin, C., & Feine, J. S. (2000) Pain expression and stimulus localization in individuals with Down’s syndrome. Lancet, 356:1882–7.

 

Jancar, J. & Speller, C. J. (1994). Fatal intestinal obstruction in the mentally handicapped. Journal of Intellectual Disability Research, 38:413–22.

 

Koh, J.L., Fanurik, D., Harrison, R.D., Schmitz, M.L., & Norvell, D. (2004). Analgesia following surgery in children with and without cognitive impairment. Pain, 111:239-44. 10.1016/j.pain.2004.07.005

 

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. Journal of Pain Research. 2827-36. https://doi.org/10.2147/jpr.s177534

 

Malviya, S., Voepel-Lewis, T., Tait, A. R., Merkel, S., Lauer, A. Munro, H, & Farley, F.  (2001). Pain management in children with and without cognitive impairment following spine fusion surgery. Paediatric Anaesthesa,11:453-458. https://doi.org/10.1046/j.1460-9592.2001.00686.x

 

Mencap. (2007). Death by indifference. Mencap.

 

Moore, D. J., Jordan, A., Wainwright, E., Failla, M.D., Connell, H., & Gauntlett-Gilbert, J. (2025). The effects of autistic traits in adolescents on the efficacy of paediatric Intensive Interdisciplinary Pain Treatment (IIPT). The Journal of Pain. 27:104757. https://doi.org/10.1016/j.jpain.2024.104757

 

Riquelme, I. & Montoya, P. (2010). Developmental changes in somatosensory processing in cerebral palsy and healthy individuals. Clinical Neurophysiology, 121:1314-20. https://doi.org/10.1016/j.clinph.2010.03.010

 

Summers, J., Shahrami, A., Cali, S., D'Mello, C., Kako, M., Palikucin-Reljin, A., Savage, M., Shaw, O., & Lunsky, Y. (2017). Self-Injury in autism spectrum disorder and intellectual disability: Exploring the role of reactivity to pain and sensory input. Brain Sciences,  7(11). https://doi.org/10.3390/brainsci7110140

 

Valkenburg A.J., Tibboel, D., & van Dijk, M. (2015). Pain sensitivity of children with Down syndrome and their siblings: quantitative sensory testing versus parental reports. Developmental Medicine & Child Neurology, 57:1049-55. https://doi.org/10.1111/dmcn.12823

 

Walsh, M., Morrison, T.G., & McGuire, B.E. (2011). Chronic pain in adults with an intellectual disability: prevalence, impact, and health service use based on caregiver report. Pain, 152:1951-7. https://doi.org/10.1016/j.pain.2011.02.031

 

Whitney, D. G. & Shapiro, D. N. (2019). National prevalence of pain among children and adolescents with autism spectrum disorders. [Research Letter]. JAMA Pediatrics,c173(12):1203-5. 10.1001/jamapediatrics.2019.3826

 

 

Submission Details

Interested contributors should submit a letter of interest (LOI) consisting of a 500-word abstract and 150-word author biographies. The LOI abstract should specify the methods used and elaborate on the significance of the contribution to the special issue. Theoretical manuscripts should articulate clear frameworks that may be applied to interventions to promote improved pain assessment, management, and/or mechanistic understanding. A strong grounding in biopsychosocial models and theory is encouraged, as well as integration of theory from interdisciplinary perspectives.

Please submit abstracts and very short author biographies to Dr David Moore and Professor Frank Symons

by March 1, 2026.

Manuscripts
(if invited)

Submitted manuscripts will be peer-reviewed for quality and rigor. An invitation to submit a manuscript does not guarantee acceptance of the manuscript.

All manuscript submissions should be original, unpublished, and ensure an inclusive study design. Papers should be formatted according to the APA style guide (7th edition) and 

submitted through the platform.

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