Skip to main content

Advertisement

SpringerLink
Log in

Parent and Pediatrician Perspectives Regarding the Primary Care of Children with Autism Spectrum Disorders

  • Original Paper
  • Published:
Journal of Autism and Developmental Disorders Aims and scope Submit manuscript

Abstract

Parents of children with autism spectrum disorders (ASD) (n = 144) and primary care providers (PCPs) (n = 144) completed similar surveys assessing the ability of the PCP to address ASD-specific needs. Parents also rated their PCP’s ability to deliver family-centered care. A majority of parents rated their PCP’s ability as “not good” in addressing 14 of 17 ASD-specific needs, while a majority of PCPs rated themselves as “good” in addressing 10 of 17 areas. On 7 of 17 items, parents rated their PCPs lower than PCPs rated themselves. Parents who reported receiving family-centered care were more likely to rate the PCP’s ability to meet ASD specific needs as “good”. Both parents and PCPs identified areas for improvement in caring for children with ASD.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  • Ahmedani, B. K., & Hock, R. M. (2012). Health care access and treatment for children with co-morbid autism and psychiatric conditions. Social Psychiatry and Psychiatric Epidemiology,. doi:10.1007/s00127-012-0482-0.

    PubMed  Google Scholar 

  • Akins, R. S., Angkustsiri, K., & Hansen, R. L. (2010). Complementary and alternative medicine in autism: An evidence-based approach to negotiating safe and efficacious interventions with families. Neurotherapeutics, 7(3), 307–319.

    Article  PubMed  Google Scholar 

  • American Academy of Pediatrics. (2012). Autism: Caring for children with autism spectrum disorders—A resource toolkit for clinicians (2nd ed.). Elk Grove Village: American Academy of Pediatrics.

    Google Scholar 

  • American Academy of Pediatrics Medical Home Initiatives for Children with Special Needs Project Advisory Committee. (2002). The medical home. Pediatrics, 110, 184–186.

    Article  Google Scholar 

  • Antonelli, R. C., Stille, C. J., & Antonelli, D. M. (2008). Care coordination for children and youth with special health care needs: A descriptive, multisite study of activities, personnel costs, and outcomes. Pediatrics, 122(1), e209–e216.

    Article  PubMed  Google Scholar 

  • Association for Science in Autism Treatment. (2012). http://www.asatonline.org/. Accessed February 17, 2012.

  • Autism Speaks Family Services Tool Kits. (2012). http://www.autismspeaks.org/family-services/tool-kits. Accessed June 13, 2012.

  • Autism Speaks Resourse Guide. (2012). http://www.autismspeaks.org/family-services/resource-guide. Accessed March 5, 2012.

  • Autism Votes. (2012). An autism speaks initiative. http://www.autismvotes.org/site/c.frKNI3PCImE/b.3909861/k.B9DF/State_Initiatives.htm. Accessed February 17, 2012.

  • Bisgaier, J., Levinson, D., Cutts, D. C., & Rhodes, K. V. (2011). Access to autism evaluation appointments with developmental-behavioral and neurodevelopmental subspecialists. Archives of Pediatrics and Adolescent Medicine, 165(7), 673–674.

    Article  PubMed  Google Scholar 

  • 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: National survey of children’s health. Archives of Pediatrics and Adolescent Medicine, 161(4), 399–405.

    Article  PubMed  Google Scholar 

  • Buie, T., Campbell, D. B., Fuchs, G. J., I. I. I., 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.

    Article  PubMed  Google Scholar 

  • Carbone, P. S., Behl, D. D., Azor, V., & Murphy, N. A. (2010). The medical home for children with autism spectrum disorders: Parent and pediatrician perspectives. Journal of Autism and Developmental Disorders, 40(3), 317–324.

    Article  PubMed  Google Scholar 

  • Cartwright, J. D. (2007). Provision of educationally related services for children and adolescents with chronic diseases and disabling conditions. Pediatrics, 119(6), 1218–1223.

    Article  PubMed  Google Scholar 

  • CDC. (2009). Prevalence of autism spectrum disorders—Autism and developmental disabilities monitoring network, United States, 2006. MMWR Surveill Summ, 58(10), 1–20.

    Google Scholar 

  • Chiri, G., & Warfield, M. E. (2011). Unmet need and problems accessing core health care services for children with autism spectrum disorder. Maternal and Child Health Journal,. doi:10.1007/s10995-011-0833-6.

    Google Scholar 

  • Committee on Children with Disabilities. (2001). American Academy of Pediatrics: Counseling families who choose complementary and alternative medicine for their child with chronic illness or disability. Pediatrics, 107(3), 598–601.

    Google Scholar 

  • Cooley, W. C., McAllister, J. W., Sherrieb, K., & Kuhlthau, K. (2009). Improved outcomes associated with medical home implementation in pediatric primary care. Pediatrics, 124(1), 358–364.

    Article  PubMed  Google Scholar 

  • Coury, D. (2010). Medical treatment of autism spectrum disorders. Current Opinion in Neurology, 23(2), 131–136.

    Article  PubMed  Google Scholar 

  • Coury, D., Jones, N. E., Klatka, K., Winklosky, B., & Perrin, J. M. (2009). Healthcare for children with autism: The autism treatment network. Current Opinion in Pediatrics, 21(6), 828–832.

    Article  PubMed  Google Scholar 

  • Daniels, A. M., Rosenberg, R. E., Anderson, C., Law, J. K., Marvin, A. R., & Law, P. A. (2011). Verification of parent-report of child autism spectrum disorder diagnosis to a web-based autism registry. Journal of Autism and Developmental Disorders, 42(2), 257–265.

    Article  Google Scholar 

  • Dawson, G., Rogers, S., Munson, J., Smith, M., Winter, J., Greenson, J., et al. (2010). Randomized, controlled trial of an intervention for toddlers with autism: the early start Denver model. Pediatrics, 125(1), e17–e23.

    Article  PubMed  Google Scholar 

  • Denboba, D., McPherson, M. G., Kenney, M. K., Strickland, B., & Newacheck, P. W. (2006). Achieving family and provider partnerships for children with special health care needs. Pediatrics, 118(4), 1607–1615.

    Article  PubMed  Google Scholar 

  • Dosreis, S., Weiner, C. L., Johnson, L., & Newschaffer, C. J. (2006). Autism spectrum disorder screening and management practices among general pediatric providers. Journal of Developmental and Behavioral Pediatrics, 27(2 Suppl), S88–S94.

    Article  PubMed  Google Scholar 

  • Gerber, J. S., & Offit, P. A. (2009). Vaccines and autism: A tale of shifting hypotheses. Clinical Infectious Diseases, 48(4), 456–461.

    Article  PubMed  Google Scholar 

  • Goin-Kochel, R. P., Mackintosh, V. H., & Myers, B. J. (2006). How many doctors does it take to make an autism spectrum diagnosis? Autism, 10(5), 439–451.

    Article  PubMed  Google Scholar 

  • Golnik, A. E., & Ireland, M. (2009). Complementary alternative medicine for children with autism: A physician survey. Journal of Autism and Developmental Disorders, 39(7), 996–1005.

    Article  PubMed  Google Scholar 

  • Golnik, A., Ireland, M., & Borowsky, I. W. (2009). Medical homes for children with autism: A physician survey. Pediatrics, 123(3), 966–971.

    Article  PubMed  Google Scholar 

  • Golnik, A., Scal, P., Wey, A., & Gaillard, P. (2011). Autism-specific primary care medical home intervention. Journal of Autism and Developmental Disorders,. doi:10.1007/s10803-011-1351-5.

    Google Scholar 

  • Gupta, V. B., O’Connor, K. G., & Quezada-Gomez, C. (2004). Care coordination services in pediatric practices. Pediatrics, 113(5 Suppl), 1517–1521.

    PubMed  Google Scholar 

  • Hanson, E., Kalish, L. A., Bunce, E., Curtis, C., McDaniel, S., Ware, J., et al. (2007). Use of complementary and alternative medicine among children diagnosed with autism spectrum disorder. Journal of Autism and Developmental Disorders, 37(4), 628–636.

    Article  PubMed  Google Scholar 

  • Harrington, J. W., Rosen, L., Garnecho, A., & Patrick, P. A. (2006). Parental perceptions and use of complementary and alternative medicine practices for children with autistic spectrum disorders in private practice. Journal of Developmental and Behavioral Pediatrics, 27(2 Suppl), S156–S161.

    Article  PubMed  Google Scholar 

  • Johnson, C. P., & Myers, S. M. (2007). Identification and evaluation of children with autism spectrum disorders. Pediatrics, 120(5), 1183–1215.

    Article  PubMed  Google Scholar 

  • King, G. A., Rosenbaum, P. L., & King, S. M. (1997). Evaluating family-centred service using a measure of parents’ perceptions. Child: Care, Health and Development, 23(1), 47–62.

    Article  Google Scholar 

  • Kogan, M. D., Strickland, B. B., Blumberg, S. J., Singh, G. K., Perrin, J. M., & van Dyck, P. C. (2008). A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005–2006. Pediatrics, 122(6), e1149–e1158.

    Article  PubMed  Google Scholar 

  • Leyfer, O. T., Folstein, S. E., Bacalman, S., Davis, N. O., Dinh, E., Morgan, J., et al. (2006). Comorbid psychiatric disorders in children with autism: Interview development and rates of disorders. Journal of Autism and Developmental Disorders, 36(7), 849–861.

    Article  PubMed  Google Scholar 

  • Liptak, G. S., & Revell, G. M. (1989). Community physician’s role in case management of children with chronic illnesses. Pediatrics, 84(3), 465–471.

    PubMed  Google Scholar 

  • Liptak, G. S., Orlando, M., Yingling, J. T., Theurer-Kaufman, K. L., Malay, D. P., Tompkins, L. A., et al. (2006). Satisfaction with primary health care received by families of children with developmental disabilities. Journal of Pediatrics Health Care, 20(4), 245–252.

    Article  Google Scholar 

  • Medical Home Portal. (2011). http://www.medicalhomeportal.org/. Accessed February 18, 2012.

  • Miller, J. S., Gabrielsen, T., Villalobos, M., Alleman, R., Wahmhoff, N., Carbone, P. S., et al. (2011). The each child study: Systematic screening for autism spectrum disorders in a pediatric setting. Pediatrics, 127(5), 866–871.

    Article  PubMed  Google Scholar 

  • Murphy, N. A., & Carbone, P. S. (2011). Parent–provider–community partnerships: Optimizing outcomes for children with disabilities. Pediatrics, 128(4), 795–802.

    Article  PubMed  Google Scholar 

  • Myers, S. M., & Johnson, C. P. (2007). Management of children with autism spectrum disorders. Pediatrics, 120(5), 1162–1182.

    Article  PubMed  Google Scholar 

  • National Center for Complementary and Alternative Medicine. (2012). http://nccam.nih.gov/. Accessed February 17, 2012.

  • National Conference of State Legislatures. (2012). Insurance coverage for autism. http://www.ncsl.org/issues-research/health/autism-and-insurance-coverage-state-laws.aspx. Accessed February 17, 2012.

  • Pierce, K., Carter, C., Weinfeld, M., Desmond, J., Hazin, R., Bjork, R., et al. (2011). Detecting, studying, and treating autism early: The one-year well-baby check-up approach. Journal of Pediatrics, 159(3), 458–465.

    Article  PubMed  Google Scholar 

  • Ruble, L. A., McGrew, J., Dalrymple, N., & Jung, L. A. (2010). Examining the quality of IEPs for young children with autism. Journal of Autism and Developmental Disorders, 40(12), 1459–1470.

    Article  PubMed  Google Scholar 

  • Section on Complementary and Integrative Medicine; Council on Children with Disabilities. (2012). Sensory integration therapies for children with developmental and behavioral disorders. Pediatrics, 129(6), 1186–1189.

    Article  Google Scholar 

  • Strickland, B. B., Singh, G. K., Kogan, M. D., Mann, M. Y., van Dyck, P. C., & Newacheck, P. W. (2009). Access to the medical home: new findings from the 2005–2006 national survey of children with special health care needs. Pediatrics, 123(6), e996–e1004.

    Article  PubMed  Google Scholar 

  • Turchi, R. M., Berhane, Z., Bethell, C., Pomponio, A., Antonelli, R., & Minkovitz, C. S. (2009). Care coordination for CSHCN: Associations with family-provider relations and family/child outcomes. Pediatrics, 124(Suppl 4), S428–S434.

    Article  PubMed  Google Scholar 

  • Weedon, D., Carbone, P. S., Bilder, D., O’Brien, S., & Dorius, D. (in press). Building a person-centered medical home: Lessons from a program for people with developmental disabilities. Journal of Health Care for the Poor and Underserved.

  • Wise, M. D., Little, A. A., Holliman, J. B., Wise, P. H., & Wang, C. J. (2010). Can state early intervention programs meet the increased demand of children suspected of having autism spectrum disorders? Journal of Developmental and Behavioral Pediatrics, 31(6), 469–476.

    PubMed  Google Scholar 

Download references

Acknowledgments

We are grateful to the staff at the Carmen B. Pingree Center for Children with Autism and Spectrum Academy, as well as the families for their participation in the study. We also thank the members of the Utah Chapter of the American Academy of Pediatrics who participated in the study. This work was supported by the AAP Community Access to Child Health (CATCH) Program.

Author information

Authors and Affiliations

  1. Division of General Pediatrics, Department of Pediatrics, University of Utah Health Sciences Center, 295 Chipeta Way, Salt Lake City, UT, 84108, USA

    Paul S. Carbone, Nancy A. Murphy, Chuck Norlin, Xiaoming Sheng & Paul C. Young

  2. School of Medicine, University of Utah Health Sciences Center, Salt Lake City, UT, USA

    Virgina Azor

Authors
  1. Paul S. Carbone
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Nancy A. Murphy
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Chuck Norlin
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Virgina Azor
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Xiaoming Sheng
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Paul C. Young
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Paul S. Carbone.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Carbone, P.S., Murphy, N.A., Norlin, C. et al. Parent and Pediatrician Perspectives Regarding the Primary Care of Children with Autism Spectrum Disorders. J Autism Dev Disord 43, 964–972 (2013). https://doi.org/10.1007/s10803-012-1640-7

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10803-012-1640-7

Keywords

Search

Navigation