There is a widely held belief that individuals with developmental disabilities (DDs) are insensitive to pain/discomfort or have a high-threshold for pain. Thankfully, recent research has begun to challenge this notion. Instead, it is now becoming clear that individuals with DD do experience pain but may express these feelings differently as compared to neurotypical individuals. (Tordjman, S., et al, 2009) This is not surprising when one considers that deficits in communication skills are a common feature of DDs. As a result, individuals with DDs may express symptoms of pain and illness by engaging in challenging behaviors. Consequently, the challenging behaviors may be misinterpreted as serving alternative functions such as attention seeking, escape/avoidance, or access to preferred items/activities. Lack of an obvious wound and vital signs (e.g. blood pressure, pulse, respirations, and temperature) that are within normal limits, may further confound the diagnosis of a medical problem.
The Professional and Ethical Compliance Code for Behavior Analysts states that “Behavior analysts recommend seeking a medical consultation if there is any reasonable possibility that a referred behavior is influenced by medical or biological variables (BACB, 2017). However, determining when there is a “reasonable possibility” can be challenging. Research has not found that specific behavior(s) are indicative of a particular injury or illness. Another factor that complicates the situation is a lack of awareness among caregivers and medical professionals alike for how to assess pain in individuals with DDs. “These individuals are often undertreated for pain-or not treated for it at all-because health care professionals either don’t know how to assess their pain or don’t recognize that certain nonverbal behaviors can be expressions of pain.” (Baldridge, 2010) The increasing body of research into the unique health and behavior challenges within the DD community, suggests that awareness is growing.
Signs and Symptoms of Health Conditions that may result in Challenging Behaviors:
According to Regnard and colleagues, “in some patients, the main change was an absence of content signs and behaviours through silence or reduction in activity. These changes are important because a reduction in activity may be misinterpreted as contentment, while an increase in activity due to distress may be misinterpreted as a challenging behavior” (Regnard, 2006). According to the Centers for Disease Control (CDC), “some health conditions, such as asthma, gastrointestinal symptoms, eczema and skin allergies, and migraine headaches, have been found to be more common among children with developmental disabilities.” (CDC, 2017). Another study in North Carolina, showed higher rates of high blood pressure, cardiovascular disease, arthritis, diabetes, and chronic pain in individuals with DD as compared to individuals with no disability (Havercamp, S. M., et al., 2004). Given the higher rates of health problems in individuals with DDs, service providers need to remain aware of the potential relationship between challenging behaviors and pain/illness.
Research has shown that increased rates and intensity of self-injurious behaviors, aggression, tantrums, and property destruction in people with severe cognitive impairment may be an indication of pain/illness. (Carr, 2007) They further noted that increases in the rates of challenging behaviors on sick days as compared to non-sick days were likely a sign of pain or discomfort.
What you can do:
- Be alert and know what is typical for your client/student/family member.
- Document and report changes in behavior so that other service/care providers will be aware of changes.
- Refer or recommend medical assessment before implementing behavior intervention strategies
- Keep a record (e.g. Disability Distress Assessment Tool- DisDAT) of an individual’s typical demeanor and behavior as well as known signs of distress. This record can help new service providers get to know the person and provide further details to medical professionals when assessing for medical problems. Available at: https://www.stoswaldsuk.org/how-we-help/we-educate/resources/disdat/disdat-tools.aspx
- “Before considering a psychiatric diagnosis, assess and address sequentially possible causes of problem behaviour, including physical (eg, infections, constipation, pain), environmental (eg, changed residence, reduced supports), and emotional factors (eg, stress, trauma, grief)” (Sullivan, 2011).
- Use a checklist or tool (e.g. Non-Communicating Children’s Pain Checklist Revised- NCCPC-R) to assess behavioral signs. Available at: http://www.aboutkidshealth.ca/Shared/PDFs/AKH_Breau_everyday.pdf
- Be patient and be compassionate. The people we serve with developmental disabilities are faced with innumerable challenges on a daily basis. Taking the time to assess for a medical component when exploring the cause of challenging behavior could be the key to preventing long-term pain or discomfort.
Behavior Analyst Certification Board, Inc. Professional and Ethical Compliance Code for Behavior Analysts. 2017 https://www.bacb.com/wp-content/uploads/2017/09/170706-compliance-code-english.pdf
Tordjman S1, Anderson GM, Botbol M, Brailly-Tabard S, Perez-Diaz F, Graignic R, Carlier M, Schmit G, Rolland AC, Bonnot O, Trabado S, Roubertoux P, Bronsard G. (2009, Aug 26) Pain reactivity and plasma beta-endorphin in children and adolescents with autistic disorder. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/19707566/
Havercamp, S. M., Scandlin, D., Roth, M. (2004, July – August). Public Health Reports Health Disparities Among Adults with Developmental Disabilities, Adults with Other Disabilities, and Adults Not Reporting Disability in North Carolina. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1497651/pdf/15219799.pdf
Sullivan, W.F., Berg, J.M., Bradley, E., Chetham, T., Denton, R., Heng, J., Hennen, B., Joyce, D., Kelly, M., Korassy, M., Lunsky, Y., McMillam, S. (2011, May). Priamary Care of Adults with Developmental Disabilities. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3093586/#b25-0570541
Regnard, C., Reynolds, J., Watson, B., Matthews, D., Gibson, L., Clarke, C. (2006). Understanding distress in people with severe communication difficulties: developing and assessing the Disability Distress Assessment Tool (DisDAT). Retrieved from https://www.choiceforum.org/docs/jidd.pdf
Disability Distress Assessment Tool (DisDAT). Available at: https://www.stoswaldsuk.org/how-we-help/we-educate/resources/disdat/disdat-tools.aspx
Breau, L. M., and Burkitt, C. (2009). Pain Research & Management. Retrieved at www.ncbi.nlm.nih.gov/pmc/articles/PMC2706648/.
Non-Communicating Children’s Pain Checklist Revised (NCCPC-R). Available at: http://www.aboutkidshealth.ca/Shared/PDFs/AKH_Breau_everyday.pdf
Baldridge, K. H., Andrasik, F. (2010, December) Pain Assessment in People with Intellectual or Developmental Disabilities. Retrieved at https://www.nursingcenter.com/cearticle?an=00000446-201012000-00024&Journal_ID=54030&Issue_ID=1094997#P19
Carr, E. G. and Owen-DeSchryver, J. S. (2007) Physical Illness, Pain, and Problem Behavior in Minimally Verbal People with Developmental Disabilities. J Autism Dev Disord 2007;37(3):413-24.<