Journal of Autism and Developmental Disorders

, Volume 45, Issue 12, pp 4002–4014 | Cite as

A Study of Physician Knowledge and Experience with Autism in Adults in a Large Integrated Healthcare System

  • Ousseny Zerbo
  • Maria L. Massolo
  • Yinge Qian
  • Lisa A. Croen
S.I. : ASD in Adulthood: Comorbidity and Intervention


We conducted an online survey of adult health care providers at Kaiser Permanente Northern California and semi-structured interviews with a subset of physicians. The survey assessed providers’ ability to recognize autism spectrum disorder (ASD), asked them to rate their autism knowledge, comfort level in treating affected patients, and evaluated training and resource needs. 922 providers completed the survey (response rate 25.3 %), and 9 were interviewed by telephone regarding their autism training and experiences caring for patients with autism. Most providers reported lacking skills and tools to care for this adult patient population. A high proportion of adult providers were not aware that they had patients with ASD. These findings underscore the need to educate physicians caring for adults with ASD.


Adults Survey Autism spectrum disorder Healthcare providers Knowledge 



The authors thank the members of the KPNC ASD in Adults Workgroup for their valuable insights and generous input regarding study design, data analysis, and interpretation of study results. No compensation was received for these contributions. The members include Lisa Croen, PhD, Stephen Rich, MD, Scott Rich, MA, Opal Thornton, MD, Clarissa Kripke, MD, Agnes Amistoso, MA, Elizabeth Dixon, LCSW, Chuck Trumble, MFT, Stephen Sidney, MD, Ousseny Zerbo, PhD, Maria Massolo, PhD, Carmen Ancinas-Gee, MFT and Neeraja Maramreddy, MD. The authors also appreciate the feedback received from Joe Gallo, MD, Meghan Davignon, MD, Thomas Weisner, PhD, and Britt Dalhberg, ABD.

Author contribution

Drs. Croen, Massolo and Zerbo conceptualized the study, obtained funding, and drafted the initial and final manuscript. Dr. Qian provided data management.


This study was funded by grants from the Special Hope Foundation.

Compliance with Ethical Standards

Conflict of interest

The authors declare that they have no conflict of interest.

Informed consent

Informed consent was obtained from all individual participants included in the study.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.


  1. American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC.Google Scholar
  2. Ayres, L., Kavanaugh, K., & Knafl, K. A. (2003). Within-case and across-case approaches to qualitative data analysis. Qualitative Health Research, 13(6), 871–883.CrossRefPubMedGoogle Scholar
  3. Baio, J. (2012). Prevalence of autism spectrum disorders: autism and developmental disabilities monitoring network, 14 Sites, United States, 2008. Morbidity and Mortality Weekly Report (MMWR), 61(SS03), 1–19.Google Scholar
  4. Bakare, M. O., Ebigbo, P. O., Agomoh, A. O., Eaton, J., Onyeama, G. M., Okonkwo, K. O., et al. (2009). Knowledge about childhood autism and opinion among healthcare workers on availability of facilities and law caring for the needs and rights of children with childhood autism and other developmental disorders in Nigeria. BMC pediatrics, 9, 12.PubMedCentralCrossRefPubMedGoogle Scholar
  5. Bakare, M. O., Ebigbo, P. O., Agomoh, A. O., & Menkiti, N. C. (2008). Knowledge about childhood autism among health workers (KCAHW) questionnaire: Description, reliability and internal consistency. Clinical practice and epidemiology in mental health: CP & EMH, 4, 17.CrossRefGoogle Scholar
  6. Billstedt, E., Gillberg, I. C., & Gillberg, C. (2007). Autism in adults: Symptom patterns and early childhood predictors. Use of the DISCO in a community sample followed from childhood. Journal of Child Psychology and Psychiatry, 48(11), 1102–1110.CrossRefPubMedGoogle Scholar
  7. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.CrossRefGoogle Scholar
  8. Bruder, M. B., Kerins, G., Mazzarella, C., Sims, J., & Stein, N. (2012). Brief report: The medical care of adults with autism spectrum disorders: Identifying the needs. Journal of Autism and Developmental Disorders, 42(11), 2498–2504.CrossRefPubMedGoogle Scholar
  9. Brugha, T. S., McManus, S., Bankart, J., Scott, F., Purdon, S., Smith, J., et al. (2011). Epidemiology of autism spectrum disorders in adults in the community in England. Archives of General Psychiatry, 68(5), 459–465.CrossRefPubMedGoogle Scholar
  10. Cheak-Zamora, N. C., Yang, X., Farmer, J. E., & Clark, M. (2013). Disparities in transition planning for youth with autism spectrum disorder. Pediatrics, 131(3), 447–454.CrossRefPubMedGoogle Scholar
  11. Croen, L. A., Zerbo, O., Qian, Y., Massolo, M. L., Rich, S., & Sidney, S., et al. (2015). The health status of adults on the autism spectrum. Autism: The International Journal of Research and Practice. doi:10.1177/1362361315577517.Google Scholar
  12. Eseigbe, E. E., Nuhu, F. T., Sheikh, T. L., Eseigbe, P., Sanni, K. A., & Olisah, V. O. (2015). Knowledge of childhood autism and challenges of management among medical doctors in Kaduna State, Northwest Nigeria. Autism Research and Treatment, 2015, 1–6. doi:10.1155/2015/892301.CrossRefGoogle Scholar
  13. Fein, D., Barton, M., Eigsti, I. M., Kelley, E., Naigles, L., Schultz, R. T., et al. (2013). Optimal outcome in individuals with a history of autism. Journal of Child Psychology and Psychiatry, 54(2), 195–205.PubMedCentralCrossRefPubMedGoogle Scholar
  14. Garg, P., Lillystone, D., Dossetor, D., Kefford, C., & Chong, S. (2014). An exploratory survey for understanding perceptions, knowledge and educational needs of general practitioners (GSs) regarding autistic disorders in new south wales (NSW), Australia. Journal of clinical and diagnostic research: JCDR, 8(7), PC01-09.Google Scholar
  15. Golnik, A., Ireland, M., & Borowsky, I. W. (2009). Medical homes for children with autism: A physician survey. Pediatrics, 123(3), 966–971.CrossRefPubMedGoogle Scholar
  16. Gurney, J. G., McPheeters, M. L., & Davis, M. M. (2006). Parental report of health conditions and health care use among children with and without autism: National Survey of Children’s Health. Archives of Pediatrics and Adolescent Medicine, 160(8), 825–830.CrossRefPubMedGoogle Scholar
  17. Harrington, J. W., Patrick, P. A., Edwards, K. S., & Brand, D. A. (2006). Parental beliefs about autism: Implications for the treating physician. Autism, 10(5), 452–462.CrossRefPubMedGoogle Scholar
  18. Hartley-McAndrew, M., Doody, R. K., & Mertz, J. (2014). Knowledge of autism spectrum disorders in potential first-contact professionals. North American Journal of Medicine and Science, 7(3), 97–102.Google Scholar
  19. 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.CrossRefPubMedGoogle Scholar
  20. Hofvander, B., Delorme, R., Chaste, P., Nyden, A., Wentz, E., Stahlberg, O., et al. (2009). Psychiatric and psychosocial problems in adults with normal-intelligence autism spectrum disorders. BMC Psychiatry, 9, 35.PubMedCentralCrossRefPubMedGoogle Scholar
  21. Igwe, M. N., Ahanotu, A. C., Bakare, M. O., Achor, J. U., & Igwe, C. (2011). Assessment of knowledge about childhood autism among paediatric and psychiatric nurses in Ebonyi state, Nigeria. Child and adolescent psychiatry and mental health, 5(1), 1.PubMedCentralCrossRefPubMedGoogle Scholar
  22. Imran, N., Chaudry, M. R., Azeem, M. W., Bhatti, M. R., Choudhary, Z. I., & Cheema, M. A. (2011). A survey of Autism knowledge and attitudes among the healthcare professionals in Lahore. Pakistan. BMC Pediatr, 11, 107.CrossRefPubMedGoogle Scholar
  23. Izuma, K., Matsumoto, K., Camerer, C. F., & Adolphs, R. (2011). Insensitivity to social reputation in autism. [Research support, N.I.H., extramural research support, non-U.S. Gov’t]. In Proceedings of the national academy of sciences of the United States of America, 108(42), 17302–17307.Google Scholar
  24. Khanna, R., & Jariwala, K. (2012). Awareness and knowledge of autism among pharmacists. Res Social Adm Pharm, 8(5), 464–471.CrossRefPubMedGoogle Scholar
  25. Kim, Y. S., Leventhal, B. L., Koh, Y. J., Fombonne, E., Laska, E., Lim, E. C., et al. (2011). Prevalence of autism spectrum disorders in a total population sample. American Journal of Psychiatry, 168(9), 904–912.CrossRefPubMedGoogle Scholar
  26. Kohane, I. S., McMurry, A., Weber, G., MacFadden, D., Rappaport, L., Kunkel, L., et al. (2012). The co-morbidity burden of children and young adults with autism spectrum disorders. PLoS ONE, 7(4), e33224.PubMedCentralCrossRefPubMedGoogle Scholar
  27. Kripke, C. C. (2014). Primary care for adolescents with developmental disabilities. [Research Support, Non-U.S. Gov’t]. Primary Care, 41(3), 507–518.CrossRefPubMedGoogle Scholar
  28. 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 Pediatric Health Care, 20(4), 245–252.CrossRefPubMedGoogle Scholar
  29. Muskat, B., Burnham Riosa, P., Nicholas, D. B., Roberts, W., Stoddart, K. P., & Zwaigenbaum, L. (2014). Autism comes to the hospital: The experiences of patients with autism spectrum disorder, their parents and health-care providers at two Canadian paediatric hospitals. Autism.Google Scholar
  30. Nicolaidis, C., Kripke, C. C., & Raymaker, D. (2014). Primary care for adults on the autism spectrum. [Research Support, N.I.H., Extramural]. The Medical clinics of North America, 98(5), 1169–1191.CrossRefPubMedGoogle Scholar
  31. Nicolaidis, C., Raymaker, D. M., Ashkenazy, E., McDonald, K. E., Dern, S., Baggs, A. E., et al. (2015). Respect the way I need to communicate with you: Healthcare experiences of adults on the autism spectrum. Autism: The International Journal of Research and Practice, 98, 1169–1191.Google Scholar
  32. Nicolaidis, C., Raymaker, D., McDonald, K., Dern, S., Boisclair, W. C., Ashkenazy, E., et al. (2013). Comparison of healthcare experiences in autistic and non-autistic adults: A cross-sectional online survey facilitated by an academic-community partnership. Journal of General Internal Medicine, 28(6), 761–769.PubMedCentralCrossRefPubMedGoogle Scholar
  33. Nulty, D. D. (2008). The adequacy of response rates to online and paper surveys: What can be done? Assessment and Evaluation in Higher Education, 33(3), 301–314.CrossRefGoogle Scholar
  34. Oskoui, M., & Wolfson, C. (2012). Treatment comfort of adult neurologists in childhood onset conditions. Canadian Journal of Neurological Sciences, 39(2), 202–205.CrossRefPubMedGoogle Scholar
  35. Pellicano, E., Dinsmore, A., & Charman, T. (2014). What should autism research focus upon? Community views and priorities from the United Kingdom. Autism. doi:10.1177/1362361314529627.PubMedCentralPubMedGoogle Scholar
  36. Prayson, B., & Franco, K. (2012). Is an adult with Asperger syndrome sitting in your waiting room? Cleveland CLINIC Journal of Medicine, 79(12), 875–882.CrossRefPubMedGoogle Scholar
  37. Rahbar, M. H., Ibrahim, K., & Assassi, P. (2011). Knowledge and attitude of general practitioners regarding autism in Karachi, Pakistan. Journal of Autism and Developmental, 41(4), 465–474.CrossRefGoogle Scholar
  38. Teddlie, C., & Yu, F. (2007). Mixed methods sampling: A typology with examples. Journal of Mixed Methods Research, 1(1), 77–100.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2015

Authors and Affiliations

  • Ousseny Zerbo
    • 1
  • Maria L. Massolo
    • 1
  • Yinge Qian
    • 1
  • Lisa A. Croen
    • 1
  1. 1.Division of ResearchKaiser Permanente Northern CaliforniaOaklandUSA

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