Loss in services precedes high school exit for teens with autism spectrum disorder: A longitudinal study

Abstract

The present longitudinal study investigated changes in service receipt and unmet service needs spanning 14 years before and after high school exit in a large community-based sample of individuals with autism spectrum disorder (ASD) (n = 204), of whom 59% had co-occurring intellectual disability (ID). Using multilevel models, potential discontinuity of service patterns at the point of high school exit was examined, as well as the rate of change in services received and needed during the high school years and into the post-high school period. Differences between those with and without ID were probed. Study findings indicated that overall, sample members experienced a reduction in receipt of services during high school, particularly for those without co-occurring ID. After high school exit, sample members experienced a decline in services received; for those without ID, there was a continuous rate of loss of services after leaving high school but for those with ID, there was a sharp decline in services received. Unmet service needs increased right after high school exit for both those with and without ID. These patterns reflect loss of entitlement for services that accompanies high school exit, and the limited availability of adult services for individuals with ASD. This study documented not only the post-high school service cliff that has been the subject of much concern, but also that the loss of services begins long before high school exit and that subgroups of the population with ASD are particularly vulnerable. Autism Res 2019, 12: 911-921.Lay Summary: In this research, we studied changes in the number of services received before and after high school exit in a large sample of individuals with autism spectrum disorder (ASD). With each passing year during high school, individuals with ASD received fewer services. At the time of high school exit, there was a sharp drop in the number of services received, particularly for those with co-occurring intellectual disability. This study found not only that there is a post-high school service cliff, but also that the loss of services begins long before high school exit.

A Survey of Occupational Therapy Services Provided for Adults with Autism Spectrum Disorder

“…Our small sample may be reflective of a combination of factors, including the practical difficulties associated with surveying a small target population and a practice area that is still emerging. Recall from the literature review, current estimates of occupational therapy service receipt by adults with ASD range from 0 to 15% Gotham et al, 2015;Laxman et al, 2019;Turcotte et al, 2016). Furthermore, excluding occupational therapists working in the school system, the second and third largest employers of our participants were outpatient clinics and other community practice settings, both of which account for a relatively small proportion of the total occupational therapy workforce (10.8% and 2% respectively) (AOTA, 2015).…”

“…As individuals with ASD age, they tend to experience a decline in the receipt of most services in the school system Laxman et al, 2019;Taylor & Henninger, 2015;Turcotte et al, 2016). After high school, when the entitlements associated with IDEA are no longer available, this decline is more dramatic (Laxman et al, 2019;Shattuck et al, 2011;Turcotte et al, 2016) and is often referred to as the service cliff (Turcotte et al, 2016). For parents of young adults with ASD, the loss of entitlements has been described as a jarring and overwhelming experience for which they are ill prepared (Anderson et al, 2018).…”

“…In contrast, occupational therapy services along with speech-language pathology, one-to-one support, and social skills training are the most common areas of unmet need for adults with ASD (Turcotte et al, 2016). The proportion of adults with ASD receiving occupational therapy services after high school ranges from almost none (Laxman et al, 2019) to 15% Gotham et al, 2015;Turcotte et al, 2016).…”

Predictors of Changes in Daily Activity in Transition‐Age Autistic Youth

“…The transition‐age group received fewer services to meet their priority needs compared to the adolescent group, which may reflect this “service cliff” [Roux et al, 2015]. Other research has found that even autistic adolescents can experience a reduction in service receipt, particularly those without ID, which continues or can become even greater post high school [Laxman, Taylor, DaWalt, Greenberg, & Mailick, 2019]. Transition planning is an integral component to addressing these service disparities, and research highlights the importance of planning before actual transition as an important component for continuity of access [Cheak‐Zamora, Yang, Farmer, & Clark, 2013; Hendricks & Wehman, 2009].…”

Impact of Working Together for Adults with Autism Spectrum Disorder: A Multifamily Group Intervention

“…Adults with autism spectrum disorder (ASD), including those without co-occurring intellectual disability (ID), have strikingly poor adult outcomes compared to their peers including lower participation in postsecondary education, high rates of unemployment/underemployment, and continued di culties with challenging behavior and mental health problems ( Entitlement to many formal services ends for these individuals at their entry into adulthood, resulting in long-term reductions in needed supports (Laxman et al, 2019). Of particular concern, there is evidence that the gains made in behavioral functioning during adolescence may plateau or even decline after these individuals exit high school (Smith et al, 2012;), suggesting adulthood as a period of heightened risk.…”