Adults with ASD in Community Mental Health Settings: Evidence for the Services Cliff

Background:  Most adults with autism spectrum disorder (ASD) struggle with mental health problems and require considerable support throughout the lifespan. Given this high rate of psychiatric comorbidity, adults with ASD may be overrepresented in mental health settings. Community mental health (CMH) centers serve a large number of adults with a variety of mental health problems, along with many school-age youth with ASD and co-occurring psychiatric disorders; however, the number of adults with ASD receiving CMH services in the United States is currently unknown. Evidence suggests that ASD often is missed or misdiagnosed among adults receiving psychiatric care, so a thorough investigation is needed to accurately determine the prevalence of adults with ASD in the CMH system.

Objectives:  This study aims to estimate the prevalence of adults with ASD in outpatient CMH settings.

Methods:  As part of the screening phase, staff from three CMH centers completed the Social Responsiveness Scale, Adult version (SRS-A) and the Autism Spectrum Disorders in Adults Screening Questionnaire (ASDASQ) for their adult clients. Our research team then conducted chart reviews to extract information found to discriminate adults with ASD from adults with other psychiatric disorders in prior studies (e.g., developmental history, substance use). A subset of these clients, stratified to heavily recruit participants with SRS-A scores > 60, completed in-person evaluations. The in-person assessment included Module 4 of the Autism Diagnostic Observation Schedule, Second Edition (ADOS-2), a brief clinical interview about ASD related characteristics not assessed by the ADOS-2, and the Overview and Psychosis modules of the Structured Clinical Interview for DSM-IV-TR Axis I Disorders (SCID). The clinical evaluation team was blind to results from the SRS and ASDASQ. Clinical case conferences were conducted for all participants to make a final determination of ASD.

Results:  To date, screening packets have been collected for 1134 clients, and 321 charts have been reviewed. We have currently completed in-person evaluations with 58 participants (39 males; mean age = 48.6 years old). An additional 35 evaluations are expected by May 2016. Of the 58 participants, 2 males met diagnostic criteria for ASD (3.45%). 

Conclusions:  Despite weighting our sample with high SRS-A scores, we have found a remarkably low number of adults with ASD in general outpatient CMH settings. Although CMH centers play an important role in treating school-age youth with ASD and co-occurring psychiatric disorders, our preliminary findings suggest that there are not many individuals with ASD (previously diagnosed or not) in general outpatient care. Our results support the growing public health concern that there may be significant unmet mental health needs experienced by adults with ASD. The extent of this problem will only increase as more and more children with ASD transition to adulthood. Clinical and policy implications will be discussed, including (1) possible reasons why general outpatient CMH service use decreases when adolescents with ASD become adults, and (2) the importance of identifying where adults with ASD can access appropriate mental health care.