Understanding and Empowering Frontline Caregivers: A Qualitative Analysis of Direct Support Professionals Working With Autistic Adults

Authors

Abstract

Direct Support Professionals (DSPs) help autistic adults live more independently and be part of their communities. They assist with daily tasks, communication, and social activities, often forming strong, supportive relationships with the people they serve. Even though DSPs are essential to these services, their experiences are rarely included in autism research. Most studies focus on autistic people themselves or use numbers and surveys that do not show the full picture of what DSPs experience in their everyday work. This constructivist grounded theory study explores what it is like to be a DSP supporting autistic adults in Maryland’s Medicaid waiver programs. Sixteen DSPs employed within Maryland’s 1915(c) home and community-based services waiver programs participated in semi-structured interviews across two phases. Using constant comparative analysis, five interrelated themes were identified: 1) Preparedness and Role Development, 2) Demands, Wellbeing, and Sustainability, 3) Patience, Trust, and Partnership in Practice, 4) Advocacy and Perceptions of Autism and the DSP Role, and 5) Systemic and Organizational Barriers. These findings culminated in the constructivist grounded theory Sustaining Support Amid Systemic Constraints, which illustrates how DSPs balance personal wellbeing, relational commitment, and advocacy within structurally inequitable systems. The theory conceptualizes sustainability as a dynamic process rooted in resilience, adaptation, and care rather than individual endurance alone. This research contributes to the broader understanding of disability services by centering DSP voices and highlighting the need for systemic reform that values and supports those providing essential care. Implications for policy, workforce development, and training underscore the importance of investing in DSPs to ensure equitable, person-centered support for autistic adults.

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