Opening an Adult Autism Clinic: Understanding Patient Needs

Background: Developing appropriate medical and mental health services for adults with Autism Spectrum Disorder (ASD) is a critical need. As children with ASD transition from pediatric practice, there are relatively few clinics designed to care for their adult needs. Little is known about utilization patterns, including if needs are diagnostic or therapeutic in nature or both. Outcomes from this study may help determine appropriate clinic staffing, and may guide other centers considering initiating specialized adult ASD clinic services. 

Objectives: We sought to understand the patient characteristics and service needs of a medical center based adult autism clinic over its first 18 months of operation.

Methods: Information, including demographic and service utilization data (Aug 2012 to June 2014) were abstracted from 385 randomly selected patient’s records. Data included primary and secondary diagnosis history, service utilization, medication use at presentation, education level, work status, living status, and communication ability. We compared patients with an established diagnosis of ASD and those seeking (SEEK) an evaluation for ASD using Chi-square analyses for categorical variables, and the Mann-Whitney U test for continuous variables.

Results: The average age of all clinic patients was 27 years (range 17-72), of which 68% were male. Almost half of patients (49%) had private insurance while 47% were dependent on government programs for medical care. In regard to overall functioning, 83% of patients lived with support from family or the community, while 16% lived independently. The majority (82%) were able to communicate with words or signs while 7% used a communication device. Sixty-eight percent were prescribed behavioral medication. At initiation of services, 50% reported ASD without a significant comorbid or etiological diagnosis , 18% reported a genetic or significant psychiatric condition in addition to ASD, and 25% were in the SEEK group. The vast majority of individuals had well-established care (93%).  In comparison to the SEEK group, patients with an established diagnosis of ASD, were younger,  less likely to be employed, less likely to be living independently, had higher clinic utilization), more phone visits per year, were more likely to be on behavioral medication, and were  less likely to have well-established care (all p<0.01).

Conclusions:   Adults with ASD often transition from specialty ASD pediatric care into a confusing landscape of adult health care networks. Our analysis distinguished two distinct types of patient needs in the Adult Autism Clinic- those with an established diagnoses of ASD and those seeking evaluation for ASD. Those with established diagnoses were lower functioning and more impacted. This highlights the importance of continuing well-established specialty care into adulthood. Our utilization data suggest that the majority of patients had well-established care networks; opening the opportunity for medical homes to partner with adult autism specialty care clinics. This study also emphasizes the need for ongoing diagnostic services for the relatively higher functioning group of adults seeking an ASD evaluation.