Evaluating a Health Service Intervention for Adults with Autism Spectrum Disorder

Background:

Adults with ASD and their families report difficulty locating knowledgeable medical professionals, and a lack of coordinated services and provider-patient communication. Based on needs assessments including input from community stakeholders, a model of service delivery for adults was implemented and evaluated. This intervention incorporated adult diagnostic services, primary care for adults with ASD, and health care monitoring and consultation for complex health and ASD needs. Evaluation aims included process outcomes and qualitative experiences of service users and program delivery personnel.

Objectives:

To examine intervention outcomes such as utilization and patient satisfaction patterns

To examine perceived impact of service provision for adults with ASD, families, community ASD advocates and stakeholders, and clinical service providers

Methods:

This intervention evaluation-based study drew on participatory action research methodology, with a mixed data collection methods (qualitative and quantitative measures). Self-advocates and families were central to this evaluation design and process. Quantitative indicators consisted of patient demographics, service utilization patterns, and patient satisfaction/impact survey data. Qualitative data consisted of videoethnography-based interviews, resulting in video footage from service constituents offering commentary about the perceived impact of this intervention, including the needs of adults with ASD and the extent to which these needs are addressed by the intervention. Evaluation data were subjected to appropriate quantitative or qualitative analysis. As an example, video data was subjected to coding, categorization of codes and the determination of themes based on identified domains of need, as indicated by self-advocates and their families.

Results:

Findings indicate strong stakeholder engagement of and value placed on diagnostic and consultation services for adults with ASD. Service needs and demands for this intervention have already outpaced current service availability thresholds. Accordingly, core services have been well-utilized and viewed as impactful, and self-advocates report high levels of satisfaction with the intervention, based on surveys. Intervention users appreciate and strongly endorse clinical services that entail an understanding of ASD and its manifestation in adulthood. Of note, 60% of referrals for adult diagnostic services have resulted in a confirmed diagnosis of ASD, thereby seemingly identifying a substantial cohort of adults with ASD in the community who have remained undiagnosed and likely under-served over time. Impact measures suggest that this model of coordinated adult health services addresses a critical need, including benefits of adult-based accessible diagnostic services, clinical expertise for complex health and mental health care, and continued community capacity building in ASD. The videoethnographic findings yield illustrative video commentary that convey key interventional learnings for program development. Outcomes including lessons learned, benefits and service gaps will be identified in this presentation.

Conclusions:

This intervention study informs accessible healthcare services for adults with ASD. For individuals with ASD and complex health and mental health needs, findings support a community-based ‘medical home’ approach, including accessible diagnostic and consultation services. Findings invite ongoing capacity building across the healthcare continuum to proactively address gaps such as support for transition to adulthood, resources for seniors with ASD, and employment and housing needs within this population. Recommendations for program implementation and evaluation will be offered.