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Many of the nearly six million autistic adolescents and adults in the United States require support to navigate daily life. Family members often provide the first line of support for autistic youth by providing care and coordinating services. Although considerable research has examined the perspectives of family members caring for young autistic children, comparatively less has focused on those caring for transition-age youth who often struggle to access needed services as they leave child-serving systems of care. This study examined caregiver-reported barriers to service for 174 adolescents and young adults on the spectrum (ages 16-30) and the association between such barriers and unmet service needs. Exploratory factor analysis suggested two service barrier domains: access (e.g., cost) and quality (e.g., providers not trained). Regression models indicated that caregivers whose youth were diagnosed at older ages perceived both greater access and quality barriers. Male caregivers reported fewer access barriers, and those who perceived greater caregiver burdens (daily life disruptions, financial difficulties, and worries) reported more access barriers. Caregivers whose youth lived with them reported fewer quality barriers. Greater access--but not quality--service barriers predicted greater unmet service needs. Findings have implications for service delivery to autistic youth and specific directions for future research.

This study explored predictors of service use among 174 transition-age youth (age 16-30) with an Autism Spectrum Disorder using Andersen's (J Health Soc Behav 36(1):1-10, 1995) healthcare utilization model. Family caregivers were interviewed about past 6-month use of 15 services. On average, youth used 6.1 and needed 3.2 additional services. Greater service use was associated with two predisposing (caregiver college educated, caregiver not married/partnered), two enabling (youth has Medicaid waiver, youth in high school), and one need factor (lower adaptive functioning). Use of specific services was most strongly related to enabling (Medicaid waiver, in high school) and need factors (lower adaptive functioning, comorbid mental health diagnosis). Findings provide a snapshot of the "service cliff" faced by families and highlight the need for additional research.

Objective: This study examined the factor structure and psychometric properties of the Urban Hassles Index (UHI). Method: Exploratory factor analyses (EFAs) were conducted via principal axis factoring extraction method. Confirmatory factor analyses were conducted to evaluate the fit of the EFA-derived model using the weighted least squares estimator with mean and variance adjustments. Composite/scale scores were created for the extracted factors, with a total score derived by summing the scale scores. Criterion-related validity was examined using hierarchical regressions. Results: The UHI had four first-order factors ("environmental nuisance," "safety concerns," "drug," and "coercion") accounting for 43% of the total variance. Covariance among the first-order factors was explained by a higher second-order factor. Moderate factor correlations and evidence for the criterion-related validity of the subscales and total score indicated multidimensionality of the UHI. Conclusions: The shortened 16-item UHI is a brief assessment tool evaluating stressors unique to urban adolescents, providing specific intervention targets.