“They Looked at Me as a Person, Not Just a Diagnosis”: A Qualitative Study of Patient and Parent Satisfaction with a Specialized Primary Care Clinic for Autistic Adults

Background:
Autistic adults have complex physical and mental health care needs that necessitate specialized approaches to health care. One promising approach is to embed providers with specialized training or specialty clinics for autistic adults within general primary care facilities. We previously found that autistic adults who received their health care through one specialty clinic designed with and for autistic adults had better continuity of care and more preventive service utilization than national samples of autistic adults.


Objective:
To characterize factors that increased or decreased satisfaction with health care received through a specialty clinic for autistic adults.


Methods:

We conducted 30- to 60-minute semi-structured interviews with autistic adults (
N
 = 9) and parents of autistic adults (
N
 = 12). We conducted an inductive thematic analysis using a phenomenological approach.



Results:
Factors that increased participants' satisfaction included: (1) receiving personalized care from the provider; (2) spending quality time with the provider; and (3) having strong, positive patient–provider relationships. Factors that decreased participants' satisfaction included: (1) lack of access to services due to scarcity of trained providers; (2) difficulty at times communicating with the provider; and (3) system-level barriers such as policies, practices, or procedures.


Conclusions:
Our findings highlight the importance of providers using personalized approaches to care that meet patients' sensory and communication needs and spending quality time with patients to establish strong, positive patient–provider relationships. Our findings also underscore the critical scarcity of health care providers who are trained to deliver care for the growing population of autistic adults.