Observers are likely to underestimate the pain levels and suffering of intellectually disabled persons. Experienced caretakers are more likely to have underestimation bias than inexperienced caretakers. The danger of underestimating the pain of individuals with intellectual disability becomes especially problematic when the individual is unable to give self report.

Underestimation of Pain in Individuals with IDD

While there exists literature that explains how typical children experience pain compared to different conditions or states like distress, depression, and anxiety, this literature is severely lacking in IDD populations. Determining these states in a typically developing child is difficult even if the child is familiar, it can be especially difficult in an atypically developing child.

Difficulty Determining if the Individual with IDD is Experiencing Pain

- Through diagnostic overshadowing, signs and symptoms of pain may be attributed to a person’s disability.

- Providers and secondary caregivers can utilize personal profiles, like hospital passports, to recognize typical pain behaviors of the individual. 

- Personal Profiles contain data that describes the individual’s typical presentation of pain.

Diagnostic Overshadowing and Pain

Facial & behavioral expressions of pain are inherently consistent across populations. They are also shaped by differences in the central nervous system (CNS) structure and function that are related to an individual’s disability. Situational factors like an individual’s immediate surroundings, caregiver behavior, and culture can also influence pain expression.

Facial and Behavioral Expressions of Pain

Individuals with an intellectual or developmental disorder may display  idiosyncratic and typical pain behaviors when they are not experiencing pain. This can make it difficult for caregivers to decipher if the individual is experiencing pain. Examples of these behaviors include moaning, self injury, and facial changes.

Idiosyncratic and Typical Pain Behaviors in IDD

It is not feasible to obtain self report in individuals with severe IDD. Sometimes the only way to assess the pain level of an individual with IDD is to obtain information from the proxy. While this may not be the best option, it is better than not assessing the pain level at all. There is a lack of understanding in what factors may influence the accuracy of these reports. 


Proxy-Report Biases

There are many confounding factors, challenges, and biases that make identifying pain responses in children with IDD difficult.

Cedarville University

While this population may present their symptoms of pain atypically, there is little reason to question or doubt that these individuals experience and express pain. Even if their pain is not acknowledged, they are still in need of pain treatment and management.

The Case of Untreated Pain in Intellectually Disabled Persons

Barney, C. C., Andersen, R. D., Defrin, R., Genik, L. M., McGuire, B. E., & Symons, F. J. (2020). Challenges in pain assessment and management among individuals with intellectual and developmental disabilities. Pain reports, 5(4), e821. https://doi.org/10.1097/PR9.0000000000000822

Challenges in pain assessment and management among individuals with intellectual and developmental disabilities


We do not have a thorough understanding of how children with severe intellectual disability experience pain. Children with severe IDD may be unable to self report or communicate their level of pain. They may have a higher pain tolerance because several developmental disabilities may be associated with atypical pain sensitivity. Another posibility is that they may experience typical pain levels but express it atypically.

Pain Sensitivity in Children with Severe Intellectual Disability

It is estimated that an average of 70% of individuals with IDD experience chronic pain.

Chronic Pain Levels in the Intellectually and Developmentally Disabled Population

 Many interventions used to treat physical disabilities are associated with acute pain. In an example of scoliosis surgery, it has been found that children and adolescents with severe intellectual disability receive significantly fewer analgesics after surgery compared to typical cases. This example is one case that shows how pain may go untreated in populations of those with severe intellectual disability. 

Interventions and Untreated Associated Pain in Individuals with Severe IDD

The presentation of pain in individuals with intellectual and/or developmental disabilities may be distorted or confused based on underlying neurological of functional limitations.

Atypical Pain Presentation in Individuals with Intellectual and Developmental Disabilities

Children with IDD may present pain atypically. They may do so through facial and bodily responses or vocalization. Parents and caregivers may observe the child moaning, not cooperating, expressing irritability, seeking comfort or closeness, furrowing their brows, and difficulty to distract or pacify.

Learn Before

Related

Learn After