Journal of Autism and Developmental Disorders

, Volume 42, Issue 11, pp 2498–2504 | Cite as

Brief Report: The Medical Care of Adults with Autism Spectrum Disorders: Identifying the Needs

  • Mary Beth Bruder
  • Gerard Kerins
  • Cynthia Mazzarella
  • Jessica Sims
  • Neil Stein
Brief Report


There is a lack of information concerning adults with autism spectrum disorder (ASD), especially with regards to their access to health care. A paper and electronic survey was sent to 1,580 primary care physicians in Connecticut. 346 respondents returned a survey and provided care to adults with an ASD. This physician survey provides data on adults with ASD such as: reasons for physician visits, living arrangements, employment status, and any services they are receiving. Responses revealed inadequate training in the care of adults with an ASD and physicians interest in obtaining additional training. The ability to provide a medical home for adults with autism will need to address effective strategies to train current and future physicians.


Adults with autism Medical needs Characteristics of adults with ASD Training of physicians 

Supplementary material

10803_2012_1496_MOESM1_ESM.doc (36 kb)
Supplementary material 1 (DOC 36 kb)


  1. Ameson, C. L., Durkin, M. S., Benedict, R. E., Kirby, R. S., & Yeargin-Allsopp, M. (2009). Prevalence of cerebral palsy: Autism and developmental disabilities monitoring network, three sites, United States, 2004. Disability and Health Journal, 2, 45–48.CrossRefGoogle Scholar
  2. Barnhill, G. P. (2007). Outcomes in adults with Asperger syndrome. Focus on Autism and Other Developmental Disabilities, 22(2), 116–126. doi: 10.1177/10883576070220020301.CrossRefGoogle Scholar
  3. Benson, P. R. (2006). The impact of symptom severity of depressed mood among parents of children with ASD: The mediating role of stress proliferation. Journal of Autism and Developmental Disorders, 36, 685–695. doi: 10.1007/s10803-006-0112-3.PubMedCrossRefGoogle Scholar
  4. Benson, P. R. (2010). Coping, distress, and well-being in mothers of children with autism. Research in Autism Spectrum Disorders, 4, 217–228. doi: 10.1016/j.rasd.2009.09.008.CrossRefGoogle Scholar
  5. Blacher, J., & Hatton, C. (2007). Families in context: Influences on coping and adaptation. In S. L. Odom, R. H. Horner, M. E. Snell, & J. Blacher (Eds.), Handbook of developmental disorder (pp. 531–546). New York: Guilford.Google Scholar
  6. Blacher, J., & McIntyre, L. L. (2006). Syndrome specificity and behavior disorders in young adults with intellectual disability: Cultural differences in family impact. Journal of Intellectual Disability Research, 50, 184–198. doi: 10.1111/j.1365-2788.2005.00768.x.PubMedCrossRefGoogle Scholar
  7. Bond, L., Kerr, M., Dunstan, F., & Thapar, A. (1997). Attidues of general practitioners towards health care for people with intellectual disability and the factors underlying these attitudes. Journal of Intellectual Disability Research, 41, 391–400. doi: 10.1111/j.1365-2788.1997.tb00726.x.PubMedCrossRefGoogle Scholar
  8. Brachlow, A. E., Ness, K. K., McPheeters, M. L., & Gurney, J. G. (2007). Comparison of indicators for a primary care medical home between children with autism or asthma and other special health care needs. Archives of Pediatrics and Adolescent Medicine, 161, 399–405. doi: 10.1001/archpedi.161.4.399.PubMedCrossRefGoogle Scholar
  9. Braddock, D., Hemp, R., Rizzolo, M. C., Haffer, L., Tanis, E. S., & Wu, J. (2011). The state of the states in developmental disabilities. Boulder, CO: Coleman Institute for Cognitive Disabilities, University of Colorado.Google Scholar
  10. Bruder, M. B., Mogro-Wilson, C., & Kerins, G. J. (2010). A survey assessing the presence of “medical home” for adults with disabilities in Connecticut. Connecticut Medicine, 74(6), 341–348.PubMedGoogle Scholar
  11. Brugha, T., McManus, S., Meltzer, H., Purdon, S., Scott, F., & Baron-Cohen, S. (2009). Policy research programme independent report. London: The Health and Social Care Information Centre.Google Scholar
  12. Butterworth, J., Hall, A. C., Smith, F. A., Migliore, A., & Winsor, J. (2011). StateData: The national report on employment services and outcomes. Boston, MA: Institute for Community Inclusion, University of Massachusetts Boston.Google Scholar
  13. Centers for Disease Control and Prevention. (2010). Autism spectrum disorders: Facts about ASDs Retrieved May 28, 2010, from
  14. Drum, C. E., Krahn, G. L., Peterson, J. J., Horner-Johnson, W., & Newton, K. (2009). Health of people with disabilities: Determinants and disparities. In C. E. Drum, G. L. Krahn, & H. Bersani Jr (Eds.), Disability and public health (pp. 125–144). Washington, DC: American Association on Intellectual and Developmental Disabilities.CrossRefGoogle Scholar
  15. Eisenhower, A. S., Baker, B. L., & Blacher, J. (2005). Preschool children with intellectual disability: Syndrome specificity, behavior problems, and maternal well-being. Journal of Intellectual Disability Research, 49, 657–671. doi: 10.1111/j.1365-2788.2005.00699.x.PubMedCrossRefGoogle Scholar
  16. Friedlander, A. H., Yagiela, J. A., Paterno, V. I., & Mahler, M. E. (2006). The neuropathology, medical management and dental implications of autism. Journal of the American Dental Association, 137, 1517–1527.PubMedGoogle Scholar
  17. Golnik, A., Ireland, M., & Borowsky, I. W. (2009). Medical homes for children with autism: A physician survey. Pediatrics, 123(3), 966–971. doi: 10.1542/peds.2008-1321.PubMedCrossRefGoogle Scholar
  18. Groden, J., Goodwin, M. S., Baron, M. G., Groden, G., Velicer, W. F., & Lipsitt, L. P. (2005). Assessing cardiovascular responses to stressors in individuals with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 20(4), 244–252. doi: 10.1177/10883576050200040601.CrossRefGoogle Scholar
  19. Hart, D., Girigal, M., & Weir, C. (2010). Expanding the paradigm: Postsecondary education options for individuals with autism spectrum disorder and intellectual disabilities. Focus on Autism and Other Developmental Disabilities, 25(3), 134–150. doi: 10.1177/1088357610373759.CrossRefGoogle Scholar
  20. Heidgerken, A. D., Geffken, G., Modi, A., & Frakey, L. (2005). A survey of autism knowledge in a health care setting. Journal of Autism and Developmental Disorders, 35(3), 323–330. doi: 10.1007/s10803-005-3298-x.PubMedCrossRefGoogle Scholar
  21. Henry, A. D., Long-Bellil, L., Zhang, J., & Himmelstein, J. (2011). Unmet need for disability-related health care services and employment status among adults with disabilities in the Massachusetts Medicaid program. Disability and Health Journal, 4(4), 209–218. doi: 10.1016/j.dhjo.2011.05.003.PubMedCrossRefGoogle Scholar
  22. Hetherington, S. A., Durant-Jones, L., Johnson, K., Nolan, K., Smith, E., & Taylor-Brown, S. (2010). The lived experiences of adolescents with disabilities and their parents in transition planning. Focus on Autism and Other Developmental Disabilities, 25(3), 163–172. doi: 10.1177/1088357610373760.CrossRefGoogle Scholar
  23. Kang, T., & Harrington, C. (2008). Variation in types of service use and expenditures for individuals with developmental disabilities. Disability and Health Journal, 1(1), 30–41. doi: 10.1016/j.dhjo.2007.11.008.PubMedCrossRefGoogle Scholar
  24. Kerins, G., & Bruder, M. B. (2003). Improving the care of older adults with developmental disabilities. Connecticut Medicine, 67(8), 511–513.PubMedGoogle Scholar
  25. Knowles, M. S., Holton, E. F, I. I. I., & Swanson, R. A. (1998). The adult learner: The definitive classic in adult education and human resources development (5th ed.). Houston, TX: Butterworth-Heinemann.Google Scholar
  26. Koritsas, S., & Iacono, T. (2009). Limitations to life participation and independence due to secondary conditions. American Association on Intellectual and Developmental Disabilities, 114(6), 437–448. doi: 10.1352/1944-7588-114.6.437.CrossRefGoogle Scholar
  27. Larson, E. B., & Reid, R. (2010). The patient-centered medical home movement. Journal of the American Medical Association, 303(16), 1644–1645. doi: 10.1001/jama.2010.524.PubMedCrossRefGoogle Scholar
  28. Lewis, M. A., Lewis, C. E., Leake, B., King, B. H., & Lindemann, R. (2002). The quality of health care for adults with developmental disabilities. Public Health Reports, 117, 174–184. doi: 10.1016/S0033-3549(04)50124-3.PubMedGoogle Scholar
  29. Melville, C. A., Finlayson, J., Cooper, S.-A., Allan, L., Robinson, N., & Burns, E. (2005). Enhancing primary health care services for adults with intellectual disabilities. Journal of Intellectual Disability Research, 49, 190–198. doi: 10.1111/j.1365-2788.2005.00640.x.PubMedCrossRefGoogle Scholar
  30. Messinger-Rapport, B. J., & Rapport, D. J. (1997). Primary care for the developmentally disabled adult. Journal of General Internal Medicine, 12, 629–636. doi: 10.1046/j.1525-1497.1997.07123.x.PubMedCrossRefGoogle Scholar
  31. Myers, S. M., Johnson, C. P., & the Council on Children with Disabilities. (2007). Management of children with autism spectrum disorders. Pediatrics, 120, 1162–1182. doi: 10.1542/peds.2007-2362.PubMedCrossRefGoogle Scholar
  32. National Center for Medical Home Implementation. (n.d.). What is a family-centered medical home? Retrieved from
  33. National Research Council. (2000). How people learn: Brain, mind, experience and school. Washington, DC: National Academy Press.Google Scholar
  34. Reid, R. J., Fishman, P. A., Yu, O., Ross, T. R., Tufano, J. T., & Soman, M. P. (2009). Patient-centered medical home demonstration: A prospective, quasi-experimental, before and after evaluation. American Journal of Managed Care, 15(9), e71–e87.PubMedGoogle Scholar
  35. Smith, D. L. (2008). Disparities in health care access for women with disabilities in the United States from the 2006 National Health Interview Survey. Disability and Health Journal, 1(2), 79–88. doi: 10.1016/j.dhjo.2008.01.001.PubMedCrossRefGoogle Scholar
  36. Smith, L. E., Hong, J., Seltzer, M. M., Greenberg, J. A., Almeida, D., & Bishop, S. L. (2010). Daily experiences among mothers of adolescents and adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 40, 167–178. doi: 10.1007/s10803-009-0844-y.PubMedCrossRefGoogle Scholar
  37. Sutherland, G., Couch, M. A., & Iacono, T. (2002). Health issues for adults with developmental disabilities. Research in Developmental Disabilities, 23, 422–445. doi: 10.1016/S0891-4222(02)00143-9.PubMedCrossRefGoogle Scholar
  38. U.S. Department of Health and Human Services. (2005). The Surgeon General’s call to action to improve the health and wellness of persons with disabilities. Washington, DC: Author.Google Scholar

Copyright information

© Springer Science+Business Media, LLC 2012

Authors and Affiliations

  • Mary Beth Bruder
    • 1
  • Gerard Kerins
    • 1
    • 2
  • Cynthia Mazzarella
    • 1
  • Jessica Sims
    • 1
    • 4
  • Neil Stein
    • 3
  1. 1.A.J. Pappanikou Center for Excellence in Developmental Disabilities Education, Research, and ServiceUniversity of ConnecticutFarmingtonUSA
  2. 2.Hospital of St. RaphaelNew HavenUSA
  3. 3.University of Connecticut Health CenterFarmingtonUSA
  4. 4.Child Care Aware of MissouriSt. LouisUSA

Personalised recommendations