Journal of Autism and Developmental Disorders

, Volume 48, Issue 12, pp 4222–4230 | Cite as

Expanding the Capacity of Primary Care to Treat Co-morbidities in Children with Autism Spectrum Disorder

  • Jeanne Van CleaveEmail author
  • Chloe Holifield
  • Ann M. Neumeyer
  • James M. Perrin
  • Erin Powers
  • Linda Van
  • Karen A. Kuhlthau
Original Paper


We examined barriers and facilitators to expanding primary care’s capacity to manage conditions associated with autism spectrum disorder (ASD). We conducted semi-structured interviews with specialists, primary care providers (PCPs), primary care staff, and parents of children with ASD, discussing health/behavior problems encountered, co-management, and patient/family experience. Participants endorsed primary care as the right place for ASD-associated conditions. Specialists advising PCPs, in lieu of referrals, efficiently uses their expertise. PCPs’ ability to manage ASD-associated conditions hinged on how behavioral aspects of ASD affected care delivery. Practices lacked ASD-specific policies but made individual-level accommodations and broader improvements benefitting children with ASD. Enhancing access to specialty expertise, particularly around ASD-associated behaviors, and building on current quality improvements appear important to expanding primary care.


Autism spectrum disorders Primary care Healthcare delivery Subspecialty care Quality improvement 



Autism spectrum disorder


Attention deficit hyperactivity disorder


Primary care provider


Quality improvement


Author Contributions

JV conceived of the study, participated in its design, data collection, data analysis and interpretation and drafted the manuscript; CH participated in the coordination of data collection, and analysis and interpretation of the data; AMN participated in the design and informed the data collection and interpretation of the study; JMP conceived of the study, and participated in the design, data analysis and writing the manuscript; EP participated in the data analysis and interpretation of the study; LV participated in the data analysis and interpretation of the study; KAK participated in the design, data collection, interpretation and writing of the manuscript. All authors read and approved the final manuscript.


This study was funded through the Autism Intervention Research Network on Physical Health (AIR-P), which is supported by Health Resources and Services Administration (HRSA) cooperative agreement UA3 MC 11054.

Compliance with Ethical Standards

Conflict of interest

The authors have no conflicts of interest to disclose.


  1. Adams, S., Cohen, E., Mahant, S., Friedman, J. N., Macculloch, R., & Nicholas, D. B. (2013). Exploring the usefulness of comprehensive care plans for children with medical complexity (CMC): A qualitative study. BMC Pediatrics, 13, 10. Scholar
  2. Alidina, S., Rosenthal, M., Schneider, E., & Singer, S. (2016). Coordination within medical neighborhoods: Insights from the early experiences of Colorado patient-centered medical homes. Health Care Management Review, 41(2), 101–112. Scholar
  3. Arora, S., Kalishman, S., Dion, D., Som, D., Thornton, K., Bankhurst, A., et al. (2011). Partnering urban academic medical centers and rural primary care clinicians to provide complex chronic disease care. Health Affairs (Millwood), 30(6), 1176–1184. Scholar
  4. Arora, S., Kalishman, S., Thornton, K., Komaromy, M., Katzman, J., Struminger, B., et al. (2016). Project ECHO (Project Extension for Community Healthcare Outcomes): A national and global model for continuing professional development. Journal of Continuing Education in the Health Professions, 36(Suppl 1), 48–49. Scholar
  5. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. Scholar
  6. Bresnahan, M., Hornig, M., Schultz, A. F., Gunnes, N., Hirtz, D., Lie, K. K., et al. (2015). Association of maternal report of infant and toddler gastrointestinal symptoms with autism: Evidence from a prospective birth cohort. JAMA Psychiatry, 72(5), 466–474. Scholar
  7. Broder-Fingert, S., Shui, A., Ferrone, C., Iannuzzi, D., Cheng, E. R., Giauque, A., et al. (2016). A pilot study of autism-specific care plans during hospital admission. Pediatrics, 137(Suppl 2), S196–S204. Scholar
  8. Buie, T., Campbell, D. B., Fuchs, G. J. 3rd, Furuta, G. T., Levy, J., Vandewater, J., et al. (2010). Evaluation, diagnosis, and treatment of gastrointestinal disorders in individuals with ASDs: A consensus report. Pediatrics, 125(Suppl 1), S1–S18. Scholar
  9. Carbone, P. (2013). Moving from research to practice in the primary care of children with autism spectrum disorders. Academic Pediatrics, 13(5), 390–399. Scholar
  10. Carbone, P., Behl, D., Azor, V., & Murphy, N. (2010). The medical home for children with autism spectrum disorders: Parent and pediatrician perspectives. Journal of Autism and Developmental Disorders, 40(3), 317–324. Scholar
  11. Carbone, P., Murphy, N., Norlin, C., Azor, V., Sheng, X., & Young, P. (2013). Parent and pediatrician perspectives regarding the primary care of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43, 964–972. Scholar
  12. Cheak-Zamora, N. C., & Farmer, J. E. (2015). The impact of the medical home on access to care for children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 45, 636–644. Scholar
  13. Christensen, D. L., Baio, J., Braun, K. V., Bilder, D., Charles, J., Constantino, J. N., et al. (2016). Prevalence and characteristics of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 sites, United States, 2012. MMWR Surveillance Summary, 65(3), 1–23. Scholar
  14. Freed, G. L., Nahra, T. A., Venus, P. J., Schech, S. D., & Wheeler, J. R. (2005). Changes in the proportion and volume of care provided to children by generalists and subspecialists. The Journal of pediatrics, 146(1), 14–19. Scholar
  15. Furuta, G. T., Williams, K., Kooros, K., Kaul, A., Panzer, R., Coury, D. L., et al. (2012). Management of constipation in children and adolescents with autism spectrum disorders. Pediatrics, 130(Suppl 2), S98–S105. Scholar
  16. Glaser, B. (1965). The constant comparative method of qualitative analysis. Social Problems, 12, 436.CrossRefGoogle Scholar
  17. Goldman, S. E., Richdale, A. L., Clemons, T., & Malow, B. A. (2012). Parental sleep concerns in autism spectrum disorders: Variations from childhood to adolescence. Journal of Autism and Developmental Disorders, 42, 531–538. Scholar
  18. Golnik, A., Scal, P., Wey, A., & Gaillard, P. (2012). Autism-specific primary care medical home intervention. Journal of Autism and Developmental Disorders, 42, 1087–1093, Scholar
  19. Greenspan, S. I., Brazelton, T. B., Cordero, J., Solomon, R., Bauman, M. L., Robinson, R., et al. (2008). Guidelines for early identification, screening, and clinical management of children with autism spectrum disorders. Pediatrics, 121, 828–830. Scholar
  20. Hill, A. P., Zuckerman, K. E., Hagen, A. D., Kriz, D. J., Duvall, S. W., van Santen, J., et al. (2014). Aggressive behavior problems in children with autism spectrum disorders: Prevalence and correlates in a large clinical sample. Research in Autism Spectrum Disorders, 8, 1121–1133. Scholar
  21. Hysong, S. J., Esquivel, A., Sittig, D. F., Paul, L. A., Espadas, D., Singh, S., et al. (2011). Towards successful coordination of electronic health record based-referrals: A qualitative analysis. Implementation Science, 6, 84. Scholar
  22. Ibrahim, S. H., Voigt, R. G., Katusic, S. K., Weaver, A. L., & Barbaresi, W. J. (2009). Incidence of gastrointestinal symptoms in children with autism: A population-based study. Pediatrics, 124, 680–686. Scholar
  23. Kogan, M. D., Blumberg, S. J., Schieve, L. A., Boyle, C. A., Perrin, J. M., Ghandour, R. M., et al. (2009). Prevalence of parent-reported diagnosis of autism spectrum disorder among children in the US, 2007. Pediatrics, 124, 1395–1403. Scholar
  24. Lavelle, T. A., Weinstein, M. C., Newhouse, J. P., Munir, K., Kuhlthau, K. A., & Prosser, L. A. (2014). Economic burden of childhood autism spectrum disorders. Pediatrics, 133(3), e520–e529. Scholar
  25. Malow, B. A., Byars, K., Johnson, K., Weiss, S., Bernal, P., Goldman, S. E., et al. (2012). A practice pathway for the identification, evaluation, and management of insomnia in children and adolescents with autism spectrum disorders. Pediatrics, 130(Suppl 2), S106–S124. Scholar
  26. Myers, K., Vander Stoep, A., Zhou, C., McCarty, C. A., & Katon, W. (2015). Effectiveness of a telehealth service delivery model for treating attention-deficit/hyperactivity disorder: A community-based randomized controlled trial. Journal of the American Academy of Child and Adolescent Psychiatry, 54, 263–274. Scholar
  27. Perrin, J. M., Coury, D. L., Jones, N., & Lajonchere, C. (2012). The autism treatment network and autism intervention research network on physical health: Future directions. Pediatrics, 130(Suppl 2), S198–S201. Scholar
  28. Sarvet, B., Gold, J., Bostic, J. Q., Masek, B. J., Prince, J. B., Jeffers-Terry, M., et al. (2010). Improving access to mental health care for children: The Massachusetts Child Psychiatry Access Project. Pediatrics, 126, 1191–1200. Scholar
  29. Sikora, D. M., Vora, P., Coury, D. L., & Rosenberg, D. (2012). Attention-deficit/hyperactivity disorder symptoms, adaptive functioning, and quality of life in children with autism spectrum disorder. Pediatrics, 130(Suppl S), 91–97. Scholar
  30. Singh, K., & Zimmerman, A. W. (2015). Sleep in autism spectrum disorder and attention deficit hyperactivity disorder. Seminars in Pediatric Neurology, 22(2), 113–125. Scholar
  31. Takach, M. (2012). About half of the states are implementing patient-centered medical homes for their Medicaid populations. Health Affairs, 31, 2432–2440. Scholar
  32. Van Cleave, J., Boudreau, A., McAllister, J., Cooley, W., Maxwell, A., & Kuhlthau, K. (2015). Care coordination over time in medical homes for children with special health care needs. Pediatrics, 135, 1018–1026. Scholar
  33. Van Cleave, J., Morales, R., D., & Perrin, J. (2013). Pediatric response to court-mandated Medicaid behavioral screening in Massachusetts. Journal of Developmental and Behavioral Pediatrics, 34, 335–343. Scholar
  34. Vimalananda, V. G., Gupte, G., Seraj, S. M., Orlander, J., Berlowitz, D., Fincke, B. G., et al. (2015). Electronic consultations (e-consults) to improve access to specialty care: A systematic review and narrative synthesis. Journal of Telemedicine and Telecare, 21(6), 323–330. Scholar
  35. Wang, L., & Leslie, D. L. (2010). Health care expenditures for children with autism spectrum disorders in Medicaid. Journal of the American Academy of Child and Adolescent Psychiatry, 49, 1165–1171. Scholar
  36. Wegner, S. E., Humble, C. G., Feaganes, J., & Stiles, A. D. (2008). Estimated savings from paid telephone consultations between subspecialists and primary care physicians. Pediatrics, 122, e1136–e1140. Scholar
  37. Zablotsky, B., Pringle, B. A., Colpe, L. J., Kogan, M. D., Rice, C., & Blumberg, S. J. (2015). Service and treatment use among children diagnosed with autism spectrum disorders. Journal of Developmental and Behavioral Pediatrics, 36(2), 98–105. Scholar
  38. Zuckerman, K. E., Mattox, K., Donelan, K., Batbayar, O., Baghaee, A., & Bethell, C. (2013). Pediatrician identification of Latino children at risk for autism spectrum disorder. Pediatrics, 132, 445–453. Scholar

Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2018

Authors and Affiliations

  1. 1.Adult and Child Consortium for Health Outcomes Research and Delivery Science (ACCORDS)University of ColoradoAuroraUSA
  2. 2.Department of PediatricsDavid Geffen School of Medicine at UCLALos AngelesUSA
  3. 3.Lurie Center for AutismMassGeneral Hospital for ChildrenLexingtonUSA
  4. 4.Department of NeurologyHarvard Medical SchoolBostonUSA
  5. 5.Department of PediatricsHarvard Medical SchoolBostonUSA
  6. 6.Division of General Academic PediatricsMassGeneral Hospital for ChildrenBostonUSA
  7. 7.University of California, Irvine School of MedicineIrvineUSA
  8. 8.Touro College of Osteopathic MedicineNew YorkUSA
  9. 9.Adult and Child Consortium for Health Outcomes Research and Delivery ScienceUniversity of Colorado and Children’s Hospital ColoradoAuroraUSA

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