May also be associated with intellectual disability 
- WAGR syndrome
- Phelan-McDermid syndrome
- Christianson syndrome
- Rett syndrome


Cedarville University

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

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

Raskoff, S. Z., Thurm, A., Miguel, H. O., Kim, S. Y. H., & Quezado, Z. M. N. (2023). Pain research and children and adolescents with severe intellectual disability: ethical challenges and imperatives. The Lancet. Child & adolescent health, 7(4), 288–296. https://doi.org/10.1016/S2352-4642(22)00346-7

Pain research and children and adolescents with severe intellectual disability: ethical challenges and imperatives

 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

- Parents of children with intellectual disability who are experiencing pain may seek medical attention later than necessary due to their child’s presentation of pain
  - This delay in diagnosis can cause an increased risk of complications.

Delayed Pain Diagnosis of Children with Intellectual Disability

These scales have limited validity in those with  mild or moderate intellectual disabilities and may not be applicable to those with severe intellectual developmental disabilities due to language or cognitive deficits.

Limitations of Using Adapted Pain Scales in IDD Populations

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

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.

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