System-level challenges and unmet needs in profound autism: an exploratory caregiver survey of non-verbal individuals

Background Individuals with profound autism, particularly those with minimal or absent verbal communication, frequently present with very high levels of clinical complexity and support needs. Despite increasing recognition of this subgroup, little is known about the real-world experiences of families and the adequacy of current service systems in responding to these needs. The present study aimed to characterize the lived experience, clinical complexity, and unmet needs of parents of non-verbal individuals with autism within a defined territorial context. Methods A cross-sectional descriptive survey study was conducted in a defined Italian catchment area. A structured caregiver questionnaire including 128 items across ten thematic domains was administered online. The present analysis was restricted to parents of non-verbal individuals with autism (n = 24), representing the non-verbal subgroup within the broader profound autism population. Domains included diagnostic pathways, medical comorbidities, daily functioning, therapeutic interventions, healthcare access, sensory profile, educational context, and family impact. Data were analyzed using descriptive statistics and exploratory bivariate analyses. Results Parents described a profile characterized by severe functional dependence, pervasive communication impairment, and high levels of medical and behavioral complexity. Sleep disturbances were reported in 75.0% of cases, epilepsy in 20.8%, and current pharmacological treatment in 58.3%. Difficulty recognizing medical conditions because of communication limitations was reported as moderate to extreme in 91.7% of cases. Service use was characterized by heavy reliance on private interventions and limited availability of respite care. Public intervention intensity was low, while substantial family-level impacts were reported in caregiver employment and social participation. Aggressive and self-injurious behaviors were common, and more than half of families reported the need for physical containment at least occasionally. Conclusions The data indicate a potential mismatch between the high and multidimensional support needs of non-verbal individuals with autism and the intensity and availability of formal support. The observed pattern was characterized by low levels of publicly funded intervention, heavy reliance on private care, limited access to respite and home assistance, and marked family-level impacts. These findings support the need to examine how integrated and lifespan-oriented models of care can better address the needs of individuals with profound autism and absent verbal communication.