Service Usage, Needs, and Obstacles for Adults Living and Not Living with Family: A Message Regarding Public Policy

Background: Individuals with autism spectrum disorder (ASD) have substantial difficulty accessing services (Kraus et al., 2003; Kogan et al., 2008), and many of their service needs go unmet (Chiri & Warfield, 2012). However, the majority of studies have focused on children with ASD, and studies with adults have generally only included individuals in their twenties (Shattuck et al., 2012). Thus, there is very little research on service needs of adults with ASD.  Even less is known about how service needs for those in middle adulthood may differ depending on their living situation, which is important due to the high number of adults with ASD living with family caregivers (Krauss et al., 2005). 

Objectives: The current study investigated the service use in a large sample of adults diagnosed with ASD as children between 1970 and 1999 at the UNC TEACCH Autism Program. Specifically, this study compared services received, unmet needs, and obstacles that impacted service usage for adults living with family caregivers compared to those not living with family caregivers. 

Methods: Caregiver surveys were completed for 189 adults with ASD (21-64 years of age; M age=35.5). All participants were diagnosed with ASD during childhood (initial evaluation M age=7.22). Caregivers of adults with ASD completed a survey that included 34 questions about service usage. Analyses examined differences in service usage, unmet needs, and obstacles attaining services for those living with family members and those not living with family (including those living independently, in supervised housing, a group home, or institution).

Results: As adults, 47% of individuals with ASD lived with family members. Analyses indicated that those living with family members received significantly fewer services than those not living with family members. Specifically, they received less support with independent living skills (24% family, 62% non-family; X²=14.97, p<.001), psychological care (23% family, 57% non-family; X²=17.41, p<.001), social work (23% family, 49% non-family; X²=7.40, p=.007), and transportation (26% family, 70% non-family; X²=19.89, p<.001). Furthermore, adults living with family members were reported to have significantly more unmet needs than those not living with family members (65% family, 43% non-family; X²=9.96, p=.007). Families with adults living at home reported more struggles in knowing where to find services (36% family, 11% non-family; X²=13.68, p<.001). These findings hold when comparing individuals living at home to different types of residential categories for those living outside the home (e.g., those living with family members received fewer services than those living independently). 

Conclusions: These data indicate that adults living with family members receive approximately half the amount of services as adults who are living outside the family home. Further, adults living with family are reported to have a greater unmet need for services and difficulty knowing where to access services. With approximately half of this adult sample living with family, these results have clear implications for public policy; we need to work to increase services for middle-age adults with ASD living with family and knowledge regarding where to find these fundamental services.