Social Inequalities in Relation to Service Needs and Barriers Reported By Family Caregivers of Transition-Age Youth with Autism Spectrum Disorders

Background: Large numbers of adolescents with Autism Spectrum Disorders (ASD) enter adulthood each year. Because individuals with ASD often experience persistent impairments in functioning throughout the life course, many remain dependent on family caregivers through adulthood. Families must navigate changes in the physical and emotional maturity of ASD adolescents, along with shifts in family roles and relationships. New difficulties emerge as ASD youth transition out of the educational system—a transition often accompanied by loss of services and limited employment. Prior research has improved our understanding of the myriad challenges faced by families. Yet, gaps remain in understanding the service needs of transition-age youth, as well as the influence of social inequalities on service experiences. This study examined income and race as predictors of service receipt, needs, and barriers reported by family caregivers of transition-age youth with ASD.

Methods: Data are drawn from an ongoing study of family caregivers to youth with ASD (age 16-30), living in a midwestern city. Using materials adapted from prior studies, caregivers reported whether the ASD youth had received any of 15 services during the past 6 months, and if not, whether the service was needed. They also rated 14 service barriers. OLS regression models examined predictors of service receipt, needs, and barriers, including race, annual household income (1=less than $5000 to 12=$150,000 or more), perceived income adequacy (having not enough, just enough, or money left at month’s end), and the youth’s impairment (0=none to 12=very severe). Barriers were added as predictors of service receipt and service needs.

Results: The sample to date includes 89 family caregivers (73% White, 27% Black). Most are mothers (92%), with an average age of 53.8 (SD=7.2), and household income between $60-75K. One-third report having just enough money, while 16% report that money falls short of meeting basic needs. ASD youth are male (71%), age 20.8 (SD=3.4), with moderate impairment (M=5.9, SD=2.3). Although service barrier scores were low (13.3 on 0-42 scale), considerable variability existed (SD=8.4). Common barriers were lack of information about services (77%), inconvenient location (60%), and waiting lists (57%). ASD youth received 6.1 (SD=3.1) services, most commonly mental health (72%), medical (66%), and employment services (52%). On average, caregivers identified 3.4 (SD=2.5) needed services, including social supports (48%), life skills training (40%), and transition planning (36%). OLS results were significant at p<.05. Race was an independent predictor of service barriers, with Black caregivers scoring 4.4 points higher on the barrier scale than Whites. Perceived income adequacy—specifically, having money left at month’s end—was tied to receiving 1.7 more services than those with just enough money. Severity of impairment was the only predictor of unmet service needs.

Conclusions: This study identified specific services used and needed by transition-age youth and their families. It also provided evidence of the unique contributions of race and perceived income adequacy to service barriers and service receipt, respectively. These findings can help us target services to more effectively meet the needs of transition-age youth with ASD and their families.