A Mixed Methods Study of Physician Knowledge and Experience with Autism in Adults

Background:  As children with autism become adults their primary medical care will move from pediatrics to adult medicine. There is little evidence of knowledge about autism among adult healthcare providers, and of their readiness to provide optimal care for this adult population.

Objectives:  To determine adult healthcare providers’ general knowledge about autism, and gain an understanding of their experiences and needs in providing healthcare to adult patients with autism.

Methods: This mixed methods study consisted of a brief, online survey sent to Kaiser Permanente Northern California (KPNC) providers in adult medicine, mental health and Ob/Gyn, and semi-structured follow-up interviews with physicians in adult medicine. The 11-question survey assessed healthcare providers’ ability to recognize autism, knowledge of autism, comfort level treating patients with autism, and training and resource needs.  Follow-up interviews focused on autism training in medical school, experience caring for patients with autism, resources and training needs, challenges of clinical care, impact on visit schedule, screening for sex, drugs, and alcohol, concerns brought up by patients or caregivers, and transition from pediatrics to adult medicine.   

Results: Overall, 922 providers completed the survey (response rate 25.3%). More than 90% indicated that they would explore the possibility of ASD in a patient who had limited eye contact, and the majority recognized other autism characteristics. A high proportion under-reported the actual number of patients with ASD in their panel and rated their knowledge/skills in providing care to ASD patients as poor or fair (77%).  Only 13% agreed/ strongly agreed that they had adequate tools/referral resources to accommodate patients with autism in their practice. The majority indicated the usefulness of the following: an autism conference (66%), a checklist of community resources (77%), training on effective communication strategies with autistic patients (70%), a special primary care clinic to serve adults with developmental disabilities (64%), and training about use of psychotropic drugs for autistic patients (56%). Finally, 43% indicated willingness to participate in a follow-up telephone interview.

 Nine primary care physicians were interviewed.  The majority reported receiving little or no ASD training in medical school or residency, yet many said they were comfortable treating their patients with ASD.  Communication difficulties, primarily with patients with limited verbal abilities, were the most frequently experienced frustrations.  Some made adaptations for their patients with ASD. Many indicated that longer office visits with low functioning patients were not a problem.  Conservatorship and privacy issues were mentioned by physicians treating patients who bring caretakers to visits, and several stated that they did not bring up questions about sex, drugs and alcohol with their patients with ASD. All physicians stated that the hand-off between pediatrics and adult medicine requires improvement, and all highlighted a need for training.

Conclusions: Most adult healthcare providers recognized basic autism characteristics but reported not having adequate skills and tools to care for this growing population of adult patients. Provider training, resources, and improvements in the transition from pediatrics to adult medicine are essential to support the delivery of adequate and effective healthcare to adults with ASD.