Skip to main content

Abstract

Families embarking on the journey of ASD evaluation and treatment face a complex road ahead, and the Primary Care Clinician (PCC) can play a key role in navigating that journey successfully in the context of the medical home. Given the high frequency at which children visit their PCCs in early childhood, PCCs participate in early identification through developmental surveillance and screening and provide referrals for children who require further evaluation. Throughout childhood, PCCs facilitate crucial linkages to community resources and specialty providers while also providing routine preventive care to children with Autism Spectrum Disorder (ASD). To varying degrees, PCCs provide direct care for co-occurring medical or mental conditions and assist families in securing treatment services. To execute this role effectively, modifications to the medical home may be necessary. This chapter provides an overview of the knowledge, processes, and skills necessary to provide comprehensive care coordination for children with ASD in the medical home setting.

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

Access this chapter

Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 229.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 299.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 299.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  • Agency for Healthcare Research and Quality. (2018, August). Care coordination. Retrieved from http://www.ahrq.gov/ncepcr/care/coordination.html.

  • American Academy of Pediatrics, Council on Children with Disabilities. (2005). Care coordination in the medical home: Integrating health and related systems of care for children with special health care needs. Pediatrics, 116, 1238–1244.

    Google Scholar 

  • American Academy of Pediatrics Publications Reaffirmed and Retired. (February and May, 2008). Pediatrics, 122, 450.

    Google Scholar 

  • Applied Behavior Analysis: A Parent’s Guide (2018). Autism Speaks Autism Treatment Network, Autism Intervention Research Network on Physical Health. Retrieved from https://www.autismspeaks.org/sites/default/files/2018-08/Applied%20Behavior%20Analysis%20Guide.pdf.

  • Baio, J. (2008). Centers for Disease Control & Prevention. Prevalence of autism spectrum disorders- autism, & developmental disabilities monitoring network, 14 sites, United States. Morbidity and Mortality Weekly Report, Surveillance Summaries, 61.

    Google Scholar 

  • Baller, J. B., Barry, C. L., Shea, K., Walker, M. M., Ouellette, R., & Mandell, D. S. (2016). Assessing early implementation of state autism insurance mandates. Autism, 20, 796–807.

    Article  Google Scholar 

  • Centers for Disease Control and Prevention. (2019, September 23). Autism spectrum disorder (ASD), treatment for autism spectrum disorder. Retrieved from https://www.cdc.gov/ncbddd/autism/treatment.html.

  • Charman, T., Pickles, A., Simonoff, E., Chandler, S., Loucas, T., & Baird, G. (2011). IQ in children with autism spectrum disorders: data from the Special Needs and Autism Project (SNAP). Psychological Medicine, 4, 619–627.

    Article  Google Scholar 

  • Chlebowski, C., Robins, D. L., Barton, M. L., & Fein, D. (2013). Large-scale use of the modified checklist for autism in low-risk toddlers. Pediatrics, 131, e1121–e1127.

    Article  Google Scholar 

  • Committee on Children with Disabilities. (2001a). American Academy of Pediatrics: The pediatrician’s role in the diagnosis and management of autistic spectrum disorder in children. Pediatrics, 107, 1221–1226.

    Google Scholar 

  • Committee on Children with Disabilities. (2001b). American Academy of Pediatrics: Developmental surveillance and screening of infants and young children. Pediatrics, 108, 192–196.

    Google Scholar 

  • Council on Children with Disabilties. (2006). Identifying infants and young children with developmental disorders in the medical home: An algorithm for developmental surveillance and screening. Pediatrics, 118, 405–420.

    Article  Google Scholar 

  • DePape, A., & Lindsay, S. (2015). Parents’ experiences of caring for a children with autism spectrum disorder. Qualitative Health Research, 25, 569–583.

    Article  Google Scholar 

  • Dworkin, P. H. (1993). Detection of behavioral, developmental, and psychosocial problems in pediatric primary care practice. Current Opinion in Pediatrics, 5, 531–536.

    Article  Google Scholar 

  • Feinberg, E., Abufhele, M., Sandler, J., Augustyn, M., Cabral, H., Chen, N., … Silverstein, M. (2016). Reducing disparities in timely autism diagnosis through family navigation: results from a randomized pilot trial. Psychiatric Services, 67, 912–915.

    Google Scholar 

  • Glascoe, F. P. (2018). PEDStest. Retrieved from https://pedstest.com.

  • Greenlee, J. L., Mosley, A. S., Shui, A. M., Veenstra-VanderWeele, J., & Gotham, K. O. (2016). Medical and behavioral correlates of depression history in children and adolescents with autism spectrum disorder. Pediatrics, 137(Supplement 2), S105–S114.

    Article  Google Scholar 

  • Greenspan, S. I., & Wieder, S. (1999) The developmental individual-difference, relationship-based (DIR/Floortime) model approach to autism spectrum disorders. In E. Hollander & E. Anagnostou (Eds.), Clinical manual for the treatment of autism (pp. 179–209). American Psychiatric Publishing, Inc.

    Google Scholar 

  • Hagan, J., Shaw, J. S., & Duncan, P. M. (Eds.). (2017). Bright futures: Guidelines for health supervision of infants, children, and adolescents (4th ed.). American Academy of Pediatrics.

    Google Scholar 

  • Johnson, C. P., & Myers, S. M. (2007). American Academy of Pediatrics Council on Children with, identification and evaluation of children with autism spectrum disorders. Pediatrics, 120, 1183–1215.

    Article  Google Scholar 

  • Lobar, S. L. (2015). DSM-V changes for autism spectrum disorders (ASD): Implications for diagnosis, management, and care coordination for children with ASDs. Journal of Pediatric Health Care, 30, 359–365.

    Article  Google Scholar 

  • Lord, C., Rutter, M., DiLavore, P. C., Risi, S., Gotham, K., & Bishop, S. L. (2012). Autism Diagnostic Schedule, Second Edition (ADOS-2), Western Psychological Services.

    Google Scholar 

  • Maglione, M. A., Gans, D., Das, L., Timbie, J., & Kasari, C. (2012). Nonmedical interventions for children with ASD: Recommended guidelines and further research needs. Pediatrics, 130, S169–S178.

    Article  Google Scholar 

  • Mansour, R., Dovi, A. T., Lane, D. M., Loveland, K. A., & Pearson, D. A. (2017). ADHD severity as it relates to comorbid psychiatric symptomatology in children with autism spectrum disorders. Research in Developmental Disabilities, 60, 52–64.

    Article  Google Scholar 

  • Marí-Bauset, S., Zazpe, I., Mari-Sanchis, A., Llopis-González, A., & Morales-Suárez-Varela, M. (2014). Food selectivity in autism spectrum disorders: A systematic review. Journal of Child Neurology, 29, 1554–1561.

    Article  Google Scholar 

  • Marks, K. P., & LaRosa, A. C. (2012). Understanding developmental-behavioral screening measures. Pediatrics in Review, 33, 448–457; quiz 457–458.

    Google Scholar 

  • McElhanon, B. O., McCracken, C., Karpen, S., & Sharp, W. G. (2014). Gastrointestinal symptoms in autism spectrum disorder: A meta-analysis. Pediatrics, 133, 872–883.

    Article  Google Scholar 

  • McGuire, K., Fung, L. K., Hagopian, L., Vasa, R. A., Mahajan, R., Bernal, P., … Whitaker, A. H. (2016). Irritability and problem behavior in autism spectrum disorder: A practice pathway for pediatric primary care. Pediatrics, 137(Supplement 2), S136–S148.

    Google Scholar 

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

    Article  Google Scholar 

  • Mesibov, G. B. S. V., & Shopler, E. (2004). The TEACCH approach to autism spectrum disorders (issues in clinical child psychology). USA: Plenum Publish Corporation.

    Google Scholar 

  • Monz, B. U., Houghton, R., Law, K., & Loss, G. (2019). Treatment patterns in children with autism in the United States. Autism Research, 12, 517–526.

    Article  Google Scholar 

  • Myers, S. M., & Johnson, C. P. (2007). American Academy of Pediatric Council on Children with Disabilities. Management of children with autism spectrum disorders. Pediatrics, 120, 1162–1182.

    Article  Google Scholar 

  • National Institute for Children’s Health Quality. Creating a patient and family advisory council: A toolkit for pediatric practices. Retrieved from https://www.nichq.org/sites/default/files/resource-file/PFAC%20Toolkit.pdf.

  • Ning, M., Daniels, J., Schwartz, J., Dunlap, K., Washington, P., Kalantarian, H., … Wall, D. P. (2019). Identification and quantification of gaps in access to autism resources in the United States: An infodemiological study. Journal of Medical Internet Research, 21, e13094.

    Google Scholar 

  • Perrin, E. C., Sheldrick, C., Visco, Z., & Mattern, K. (2016). The survey of well-being of young children (SWYC) user’s manual. Floating Hospital for Children at Tufts Medical Center. Retrieved from www.floatinghospital.org/The-Survey-of-Wellbeing-of-Young-Children.

  • Richards, M., Mossey, J., & Robins, D. L. (2016). Parents’ concerns as they relate to their child’s development and later diagnosis of autism spectrum disorder. Journal of Developmental & Behavioral Pediatrics, 37, 532–540.

    Article  Google Scholar 

  • Robins, D. L. (2019). M-CHAT. Retrieved from mchatscreen.com.

  • Robins, D. L., et al. (2014). Validation of the modified checklist for autism in toddlers, revised with follow-up (M-CHAT-R/F). Pediatrics, 133, 37–45.

    Article  Google Scholar 

  • Roth, B. M., Kralovic, S., Roizen, N. J., Spannagel, S. C., Minich, N., & Knapp, J. (2016). Impact of autism navigator on access to services. Journal of Developmental and Behavioral Pediatrics, 37, 188–195.

    Article  Google Scholar 

  • Rushton, F. E., Jr. (2005). American Academy of Pediatrics Committee on Community Health, the pediatrician’s role in community pediatrics. Pediatrics, 115, 1092–1094.

    Article  Google Scholar 

  • Salisbury, L. A., et al. (2018). Sensitivity and specificity of 2 autism screeners among referred children between 16 and 48 months of age. Journal of Developmental and Behavioral Pediatrics, 39, 254–258.

    Article  Google Scholar 

  • Sanchez-Garcia, A. B., Galindo-Villardon, P., Nieto-Librero, A. B., Martin-Rodero, H., & Robins, D. L. (2019). Toddler screening for autism spectrum disorder: A meta-analysis of diagnostic accuracy. Journal of Autism Developmental Disorders, 49, 1837–1852.

    Article  Google Scholar 

  • Shahidullah, J. D., Azad, G., Mezher, K. R., McClain, M. B., & McIntyre, L. L. (2018). Linking the medical and educational home to support children with autism spectrum disorder: Practice recommendations. Clinical Pediatrics, 57, 1496–1505.

    Article  Google Scholar 

  • Sheldrick, R. C., Henson, B. S., Merchant., S., Neger, E. N., Murphy, J. M., & Perrin, E. C. (2012a). The preschool pediatric symptom checklist (PPSC): Development and initial validated of a new social-emotional screening instrument. Academic Pediatrics, 12, 456–467.

    Google Scholar 

  • Sheldrick, R. C., Henson, B. S., Neger, E. N., Merchant, S., Murphy, J. M., & Perrin, E. C. (2012b). The baby pediatric symptom checklist (BPSC): Development and initial validation of a new social-emotional screening instrument. Academic Pediatrics, 13, 72–80.

    Article  Google Scholar 

  • Sia, C., Tonniges, T. F., Osterhus, E., & Taba, S. (2004). History of the medical home concept. Pediatrics, 113, 1473–1478.

    PubMed  Google Scholar 

  • Smith, N., Sheldrick, R. C., & Perrin, E. C. (2013). An abbreviated screening instrument for autism spectrum disorders. Infant Mental Health Journal, 34, 149–155.

    Article  Google Scholar 

  • Souders, M. C., Zavodny, S., Eriksen, W., Sinko, R., Connell, J., Kerns., C., … Pinto-Martin, J. (2017). Sleep in children with autism spectrum disorder. Current Psychiatry Reports, 19, 34.

    Google Scholar 

  • Squires, J., & Bricker, D. (2009). Ages and stages questionnaire®, third edition (ASQ®-3). Paul H. Brookes Publishing, LLC. Retrieved from https://agesandstages.com.

  • Squires, J., Bricker, D., & Twombly, E. (2015). Ages and stages questionnaires, social-emotional, second edition (ASQ:SE-2). Paul H. Brookes Publishing, LLC. Retrieved from https://agesandstages.com/products-pricing/asqse-2/.

  • Stein, R. E. K., Silver, E. J., Augustyn, M. C., Blum, N. J., High, P., & Roizen, N. J. (2018). Private versus medicaid patients referred to developmental behavioral pediatricians: Do they differ? A DBPNet study. Journal of Developmental and Behavioral Pediatrics, 39, 325–334.

    Article  Google Scholar 

  • Todorow, C., Connell, J., & Turchi, R. M. (2018). The medical home for children with autism spectrum disorder: An essential element whose time has come. Current Opinion in Pediatrics, 30, 311–317.

    Article  Google Scholar 

  • U.S. Department of Education. (1974). Family Educational Rights and Privacy Act (FERPA) 34 CFR § 99.31. Retrieved from https://www2.ed.gov/policy/gen/guid/fpco/ferpa/index.html.

  • U.S. Department of Education. (1990). Individuals with Disabilities Education Act (IDEA). Retrieved from https://sites.ed.gov/idea/.

  • U.S. Department of Education, Department Office of Special Education and Rehabilitative Services. (2017). A transition guide to postsecondary education and employment for students and youth with disabilities. Retrieved from http://www2.ed.gov/about/offices/list/osers/transition/products/postsecondary-transition-guide-2017.pdf.

  • U.S. Department of Health and Human Services Health Resources and Services Administration Bureau of Health Workforce and the National Center for Health Workforce Analysis. (2018). The US health workforce chartbook: Part IV: Behavioral and allied health.

    Google Scholar 

  • Van Cleave, J., Holifield, C., Neumeyer, A. M., Perrin, J. M., Powers, R., Van, L., & Kuhlthau, K. A. (2018). Expanding the capacity of primary care to treat co-morbidities in children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 48, 4222–4230.

    Google Scholar 

  • Vasa, R. A., Mazurek, M. O., Mahajan, R., Bennett, A. E., Bernal, M. P., Nozzolillo, A. A., … Coury, D. L. (2016). Assessment and treatment of anxiety in youth with autism spectrum disorders. Pediatrics, 137(Supplement 2), S115–S123.

    Google Scholar 

  • Volkmar, F., Siegel, M., Woodbury-Smith, M., King, B., McCracker, J., State., M., & American Academy of Child and Adolescent Psychiatry Committee on Quality Issues. (2014). Practice parameter for the assessment and treatment of children and adolescents with autism spectrum disorder. Journal of the American Academy of Child Adolescent Psychiatry, 53, 237–257.

    Google Scholar 

  • Warren, Z., McPheeters, M. L., Sathe, N., Foss-Feig, J. H., Glasser, A., & Veenstra-Vanderweele, J. (2011). A systematic review of early intensive intervention for autism spectrum disorders. Pediatrics, 127, e1303–e1311.

    Article  Google Scholar 

  • Will, D., Barnfather, J., & Lesley, M. (2013). Self-perceived autism competency of primary care nurse practitioners. Journal for Nurse Practitioners, 9, 350–355.

    Article  Google Scholar 

  • Zwaigenbaum, L., Bauman, M. L., Choueiri, R., et al. (2015a). Early intervention for children with autism spectrum disorder under 3 years of age: Recommendations for practice and research. Pediatrics, 136, S60–S81.

    Article  Google Scholar 

  • Zwaigenbaum, L., et al. (2015b). Early screening of autism spectrum disorder: Recommendations for practice and research. Pediatrics, 136(Supplement 1), S41–S59.

    Article  Google Scholar 

  • American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: Author.

    Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Tyanna C. Snider .

Editor information

Editors and Affiliations

Rights and permissions

Reprints and permissions

Copyright information

© 2020 Springer Nature Switzerland AG

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Snider, T.C., Beck, K.E., Baum, R.A. (2020). Care Coordination in Primary Care. In: McClain, M., Shahidullah, J., Mezher, K. (eds) Interprofessional Care Coordination for Pediatric Autism Spectrum Disorder. Springer, Cham. https://doi.org/10.1007/978-3-030-46295-6_17

Download citation

Publish with us

Policies and ethics