Barriers to service and unmet need among autistic adolescents and young adults

Abstract

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. Lay Abstract Prior studies have described the roadblocks, or barriers, to needed services experienced by families with young autistic children, but less research has focused on those faced by autistic adolescents and young adults. In this study, we wished to understand the barriers to service experienced by autistic adolescents and young adults and their families. We surveyed 174 caregivers of autistic youth between 16 to 30 years old. We found that caregivers who felt more caregiving burden had more difficulty accessing services for their youth. Specifically, caregivers who felt more strongly that their daily lives had been disrupted, felt more financial strain, and worried more about their youth well-being experienced more roadblocks to getting services for the youth. Male caregivers also reported fewer difficulties related to service access. Importantly, the older the youth was when they had been diagnosed with autism, the more service barriers their caregivers reported. We did not see any differences in the level of barriers experienced by youth who lived in urban versus suburban settings, or between white and non-white families. However, when youth lived with their caregivers (rather than, for example, in a group home), fewer quality-related barriers to services were reported. Finally, greater access (but not quality) barriers were linked to youth having more unmet service needs. These findings can help to reduce the barriers to service experienced by autistic adolescents and young adults and their families.

Services in Minoritized Autistic Adolescents and Adults Varying in Language Skills

“…This study was based on the premise that representation in research is crucial for evidence-based practice (Office of Management and Budget, 2024;Sackett et al, 1996). Here, the number of services received and unmet needs (n = 3.34 and n = 3.32, respectively) were somewhat similar to high school seniors (n = 3.05 and n = 1.85) (Taylor & Henninger, 2015) but lower than adolescents and adults (n = 6.13 and n = 3.18) (Ishler et al, 2023;Ishler et al, 2022).…”

“…It may also be that this sample had different experiences in nuanced ways. Participants were approximately two-thirds to over two times less likely to receive transportation or social work services (Ishler et al, 2023); three to eight times more likely to identify speech-language, transportation, and personal assistant or aide services as unmet service needs (Taylor & Henninger, 2015); and more likely to endorse each individual barrier to services except for language (Koffer Miller et al, 2022;Newman et al, 2011;Taylor & Henninger, 2015). These nuances motivate attention to the literature versus making assumptions.…”

Self-determination in minoritized autistic adolescents and adults

“…As expected (Cheak-Zamora et al, 2020), unmet service needs did not predict SDI:PTR scores. However, unmet service needs did not predict SDI self-report scores, nor did barriers to services predict SDI self-report or SDI:PTR scores (Ishler et al, 2023;Taylor & Henninger, 2015). Better assessments of service needs and barriers may be needed (Burke et al, 2023).…”

“…As continuous measures of language predicted outcomes in autism (Magiati et al, 2014), we expected language to predict SDI self-report and SDI:PTR scores. In both approaches, we expected unmet service needs would predict SDI self-report but not SDI:PTR scores (Cheak-Zamora et al, 2020), and barriers to services and sense of community would predict SDI:PTR scores (Daley et al, 2018; Ishler et al, 2023; Taylor & Henninger, 2015). Per the study design, the second and third aims had no hypotheses.…”

“…Unmet service needs, and not services received, captures this variability (Burke et al, 2023), but it is unclear how unmet service needs impact self-reported self-determination (Cheak-Zamora et al, 2020). Second, barriers to services are higher if caregivers feel a greater burden (Ishler et al, 2023; Taylor & Henninger, 2015); thus, more barriers could be tied to lower caregiver-reported self-determination (Anderson et al, 2018a). Third, caregiver-reported sense of community predicts community participation (Talò et al, 2014), reduces disability-related discrimination, and increases environmental fit (Daley et al, 2018).…”