Journal of Autism and Developmental Disorders

, Volume 37, Issue 3, pp 413–424 | Cite as

Physical Illness, Pain, and Problem Behavior in Minimally Verbal People with Developmental Disabilities

  • Edward G. Carr
  • Jamie S. Owen-DeSchryver


There is growing interest in the role that physical illness and pain might play in exacerbating problem behavior in individuals with developmental disabilities. Assessment of these factors, however, is often difficult since many individuals have minimal verbal communication skills. In response to this difficulty, we developed a sequential method of assessment involving retrospective and prospective measurement strategies. We found that the frequency and intensity of problem behavior was greater on “sick” days than on “well” days. Further, the higher the level of pain, the greater was the frequency and intensity of problem behavior. We discuss the concept of pain as a setting event for problem behavior and the intervention strategies that follow from this conceptualization.


Developmental disabilities Problem behavior Physical illness Pain 



Preparation of this article was supported by Grant #H133B98005 from the National Institute on Disability and Rehabilitation Research, U.S. Department of Education, and by grants from the Organization for Autism Research and the Autism Coalition for Research and Education. The authors would like to thank Megan Robinson for help with statistical analyses.


  1. Ahles, T. A., Coombs, D. W., Jensen, L., Stukel, T., Maurer, L. H., & Keefe, F. J. (1990). Development of a behavioral observation technique for the assessment of pain behaviors in cancer patients. Behavior Therapy, 21, 449–460.CrossRefGoogle Scholar
  2. Asberg, K. H. (1989). The need for medical care among mentally retarded adults: A 5-year follow-up and comparison with a general population of the same age. The British Journal of Mental Subnormality, 68, 50–57.Google Scholar
  3. Beange, H., McElduff A., & Baker, W. (1995). Medical disorders of adults with mental retardation: A population study. American Journal on Mental Retardation, 99, 595–604.PubMedGoogle Scholar
  4. Bijou, S. W., & Baer, D. M. (1961). Child development I: A systematic and empirical theory. Englewood Cliffs, NJ: Prentice-Hall.Google Scholar
  5. Bodfish, J. W., Harper, V. N., Deacon, J. R., & Symons, F. J. (2001). Identifying and measuring pain in persons with developmental disabilities. Unpublished manuscript, Human Development Research and Training Institute, Western Carolina Center, Morganton, NC.Google Scholar
  6. Breau, L. M., Camfield, C. S., McGrath, P. J., & Finley, A. (2003). The incidence of pain in children with severe cognitive impairments. Archives of Pediatrics and Adolescent Medicine, 157, 1219–1226.PubMedCrossRefGoogle Scholar
  7. Carr, E. G., & Durand, V. M. (1985). Reducing behavior problems through functional communication training. Journal of Applied Behavior Analysis, 18, 111–126.PubMedCrossRefGoogle Scholar
  8. Carr, E. G., Horner, R. H., Turnbull, A. P., Marquis, J. G., Magito McLaughlin, D., McAtee, M. L., Smith, C. E., Anderson Ryan, K., Ruef, M. B., & Doolabh, A. (1999). Positive behavior support for people with developmental disabilities: A research synthesis. Washington, DC: American Association on Mental Retardation.Google Scholar
  9. Carr, E. G., Levin, L., McConnachie, G., Carlson, J. I., Kemp, D. C., & Smith, C. E. (1994). Communication-based intervention for problem behavior. Baltimore: Brookes.Google Scholar
  10. Carr, E. G., & Smith, C. E. (1995). Biological setting events for self-injury. Mental Retardation and Developmental Disabilities Research Reviews, 1, 94–98.CrossRefGoogle Scholar
  11. Carr, E. G., Smith, C. E., Giacin, T. A., Whelan, B. M., & Pancari, J. (2003). Menstrual discomfort as a biological setting event for severe problem behavior: Assessment and intervention. American Journal on Mental Retardation, 108, 117–133.PubMedCrossRefGoogle Scholar
  12. Cooper, S. (1998). Clinical study of the effects of age on the physical health of adults with mental retardation. American Journal on Mental Retardation, 102, 582–589.PubMedCrossRefGoogle Scholar
  13. de Lissovoy, V. (1962). Head banging in early childhood. Child Development, 33, 43–56.CrossRefGoogle Scholar
  14. Dunlap, G., dePerczel, M., Clarke, S., Wilson, D., Wright, S., White, R., & Gomez, A. (1994). Choice making and proactive behavioral support for students with emotional and behavioral challenges. Journal of Applied Behavior Analysis, 27, 505–518.PubMedCrossRefGoogle Scholar
  15. Dunlap, G., & Koegel, R. L. (1980). Motivating autistic children through stimulus variation. Journal of Applied Behavior Analysis, 13, 619–627.PubMedCrossRefGoogle Scholar
  16. Durand, V. M. (1990). Functional communication training: An intervention program for severe behavior problems. New York: Guilford.Google Scholar
  17. Ghaziuddin, M., Elkins, T. E., McNeeley, S. G., & Ghaziuddin, N. (1993). Premenstrual syndrome in women with mental handicap: A pilot study. The British Journal of Developmental Disabilities, 77, 104–107.Google Scholar
  18. Gunsett, R. P., Mulick, J. A., Fernald, W. B., & Martin, J. L. (1989). Brief report: Indications for medical screening prior to behavioral programming for severely and profoundly mentally retarded clients. Journal of Autism and Developmental Disorders, 19, 167–172.PubMedCrossRefGoogle Scholar
  19. Hart, H., Bax, M., & Jenkins, S. (1984). Health and behavior in preschool children. Child: Care, Health and Development, 10, 1–16.CrossRefGoogle Scholar
  20. Henry, B., Moffitt, T. E., Caspi, A., Langley, J., & Silva, P. A. (1994). On the “remembrance of things past”: A longitudinal evaluation of the retrospective method. Psychological Assessment, 6, 92–101.CrossRefGoogle Scholar
  21. Horner, R. H., Carr, E. G., Strain, P. S., Todd, A. W., & Reed, H. K. (2002). Problem behavior interventions for young children with autism: A research synthesis. Journal of Autism and Developmental Disorders, 32, 423–446.PubMedCrossRefGoogle Scholar
  22. Horner, R. H., Vaughn, B. J., Day, H. M., & Ard, W. R. Jr., (1996). The relationship between setting events and problem behavior. In L. K. Koegel, R. L. Koegel, & G. Dunlap (Eds.), Positive behavioral support (pp. 381–402). Baltimore: Brookes.Google Scholar
  23. Kennedy, C. H., & Meyer, K. A. (1996). Sleep deprivation, allergy symptoms, and negatively reinforced problem behavior. Journal of Applied Behavior Analysis, 29, 133–135.PubMedCrossRefGoogle Scholar
  24. Kennedy, C. H., & Thompson, T. (2000). Health conditions contributing to problem behavior among people with mental retardation and developmental disabilities. In P. Wehmeyer, & J. R. Patton (Eds.), Mental retardation in the 21st century (pp. 211–231). Austin, TX: ProEd.Google Scholar
  25. Koegel, L. K., Koegel, R. L., & Dunlap, G. (1996). Positive behavioral support. Baltimore: Brookes.Google Scholar
  26. LeBaron, S., & Zelter, L. (1984). Assessment of acute pain and anxiety in children and adolescents by self-reports, observer reports, and a behavior checklist. Journal of Consulting and Clinical Psychology, 52, 729–738.PubMedCrossRefGoogle Scholar
  27. Lekkas, C. N., & Lentino, W. (1978). Symptom-producing interposition of the colon: Clinical syndrome in mentally deficient adults. Journal of the American Medical Association, 240, 747–750.PubMedCrossRefGoogle Scholar
  28. Lovaas, O. I. (1981). Teaching developmentally disabled children. Baltimore: University Park Press.Google Scholar
  29. Mash, E. J., & Terdal, L. G. (Eds.), (1988). Behavioral assessment of childhood disorders. New York: Guildford.Google Scholar
  30. Minihan, P. (1986). Planning for community physician services prior to deinstitutionalization of mentally retarded persons. American Journal of Public Health, 76, 1202–1206.PubMedCrossRefGoogle Scholar
  31. Peine, H. A., Rokneddin, D., Adams, K., Blakelock, H., Jenson, W., & Osborne, J. G. (1995). Medical problems, maladaptive behaviors, and the developmentally disabled. Behavioral Interventions, 10, 149–159.Google Scholar
  32. Sarafino, E. P. (1994). Health psychology: Biopsychosocial interactions. New York: Wiley.Google Scholar
  33. Schreibman, L. (1988). Autism. Newbury Park, CA: Sage.Google Scholar
  34. Taylor, D. V., Rush, D., Hetrick, W. P., & Sandman, C. A. (1993). Self-injurious behavior within the menstrual cycle of women with mental retardation. American Journal on Mental Retardation, 97, 659–664.PubMedGoogle Scholar
  35. Wetherby, A., & Prutting, C. (1984). Profiles of communicative and cognitive-social abilities in autistic children. Journal of Speech and Hearing Research, 27, 364–377.PubMedGoogle Scholar

Copyright information

© Springer Science+Business Media, Inc. 2006

Authors and Affiliations

  1. 1.Department of PsychologyState University of New York at Stony BrookStony BrookUSA
  2. 2.Department of PsychologyGrand Valley State UniversityAllendaleUSA

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