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.