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


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.

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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.

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Authors and Affiliations


Corresponding author

Correspondence to Ousseny Zerbo.

Ethics declarations

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.

Appendix: Identifying Autism Spectrum Disorders in Adult Healthcare: Provider Survey

Appendix: Identifying Autism Spectrum Disorders in Adult Healthcare: Provider Survey

  1. 1.

    Which of the following patient characteristics would lead you to explore the possibility of an autism spectrum disorder (ASD) (check all that apply):

    • Has limited eye contact

    • Easily volunteers information about her/himself

    • Has a flat affect

    • Shows an interest in you

    • Is sensitive to touch

    • Is sensitive to light/sound

    • Expresses her/his emotions

    • Gives concrete responses/has literal communication style

    • Has atypical communication style

    • Concentrates on the whole picture rather than on small details

    • Has a monologue style of communication

    • Is unusually direct

  2. 2.

    When you suspect ASD in a patient, do you … (check all that apply)

    • Probe about developmental history

    • Consult with a colleague

    • Schedule a follow-up appointment

    • Refer patient to specialty care outside KP

    • Refer patient to KP behavioral medicine department

    • Refer patient to KP psychiatry department

    • Refer patient to KP neurology department

    • Refer patient to a case manager

    • Provide usual care

    • Other (please specify)

  3. 3.

    How many patients in your current practice do you know are on the autism spectrum?

    • 0

    • 1–5

    • 6–10

    • More than 10

  4. 4.

    You have adequate tools/referral resources/practice models to accommodate people with ASD in your practice

    • Strongly disagree

    • Disagree

    • Neither agree nor disagree

    • Agree

    • Strongly agree

  5. 5.

    Your patients with ASD have adequate support to partner with you effectively (e.g. they have the support they need to ask for help when they are ill; provide an accurate history; attend and cooperate at appointments; provide informed consent; and follow through on their health care plan).

    • Strongly disagree

    • Disagree

    • Neither agree nor disagree

    • Agree

    • Strongly agree

  6. 6.

    The caregivers of your patients with autism spectrum disorder have adequate services and support to partner with you effectively.

    • Strongly disagree

    • Disagree

    • Neither agree nor disagree

    • Agree

    • Strongly agree

  7. 7.

    How would you rate your knowledge and/or skills in providing care to people with ASD

    • Poor

    • Fair

    • Good

    • Very good

    • Excellent

  8. 8.

    What kind of training or resources would be useful to you (check all that apply)?

    • Conference with description of ASD

    • Checklist of community resources for patients with ASD

    • Knowledge of psychotropic drugs to treat patients with ASD

    • Network of providers to consult with about ASD (within and outside KP)

    • Toolkit for screening and diagnosis of ASD

    • Training on effective communication strategies with ASD patients

    • Special Primary Care clinic or service within KPNC that serves adults with Developmental Disabilities

  9. 9.

    Are you a……(Please check the appropriate box):

    • MD

    • Nurse

    • Psychologist

    • LCSW

    • MFT

    • Other (please specify)

  10. 10.

    What is your department?

    • Adult and family medicine

    • Obstetrics/gynecology

    • Neurology

    • Psychiatry

    • Behavioral medicine

  11. 11.

    If you are willing to be contacted for a short follow up telephone interview, please provide the following information.

    • Telephone number:

    • Best time to reach me: (format of day/time)

    • I am not interested

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Zerbo, O., Massolo, M.L., Qian, Y. et al. A Study of Physician Knowledge and Experience with Autism in Adults in a Large Integrated Healthcare System. J Autism Dev Disord 45, 4002–4014 (2015).

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  • Adults
  • Survey
  • Autism spectrum disorder
  • Healthcare providers
  • Knowledge