UC Santa Barbara

Profound autism describes individuals on the autism spectrum who have co-occurring intellectual disability or minimal verbal ability and require continuous access to care. The notable underrepresentation of individuals with profound autism in the research literature has resulted in limited knowledge about their service needs and a lack of evidence-based practices tailored to these needs. This mixed-methods study sought caregiver perspectives on service needs, barriers to service access, and treatment priorities to guide future treatment development and improvement of service delivery. Quantitative findings indicated that regular socialization opportunities were the most frequently endorsed unmet service need, followed by access to primary health care services by autism-trained medical staff, social skills instruction, life skills instruction, occupational therapy, and behavioral support. Lower socioeconomic status was associated with a greater number of unmet service needs. Increased age and greater feelings of sadness were associated with higher likelihoods of needing social skills instruction, life skills instruction, and occupational therapy. Elevated emotional reactivity and higher language level were associated with greater needs for social clubs and activity groups. Thematic analysis of qualitative data revealed a pervasive shortage of individualized services to promote ongoing skill development and socialization opportunities for adolescents and adults with profound autism. Perspectives on treatment priorities indicated a need for integrated service settings with multiple trained providers, evidence-based practices for challenging behaviors and low adaptive functioning, respite care, and service navigation support. Ultimately, this integration of qualitative and quantitative findings provides new insights into service needs for adolescents and adults with profound autism to improve the accessibility and quality of clinical care.