3 - (SYM 20) Autism After Age 30: Examining and Defining Positive Outcomes in a Diverse Longitudinal Sample

Autism research and services primarily focus on children, but autism persists across the lifespan. Moreover, research on autistic adults is often deficit-focused, cross-sectional, and underrepresents individuals with intellectual disability (ID). This presentation begins to address these gaps by leveraging 30+ years of data from the Longitudinal Study of Autism (LSA) cohort – a notably more diverse and representative sample of childhood-diagnosed autistic adults in the United States than many studies. Specifically, we highlight the need to (a) carefully define positive outcomes in more and less abled adults and (b) identify gaps in existing adult autism supports and services.  

Participants (N = 115) were autistic individuals identified between ages 2-3 years and subsequently followed for three decades. Over half (57%) of participants reside in Census-designated rural areas, 20% are Black or multiracial, 13% are female, and 37% have a primary caregiver without a college degree. Additionally, over half have co-occurring ID. We focus on these participants in their early thirties (M_age = 30.93 years, SD = 3.41), as this is often a period of pivotal change for adults.    

We found that different indicators of “positive outcomes” in adulthood paint drastically different pictures for these participants. Regarding employment rates, a more traditional indicator of adult success, only 25% have ever held full-time jobs, 28% have held part-time jobs, and 48% have never been employed. In terms of independent living, over half (55%) currently live in their family home, while 23% live independently and 22% live in a group home or another supported residential setting. However, moving away from these traditional indices and examining less deficit-focused indicators of success provides a more nuanced picture of autistic adult life. For example, all participants, including those with ID, engage in an average of two or more generative activities (e.g., leisure pursuits) on a regular basis.  

Regarding adult supports, 53% of autistic adults noted self-improvement goals (e.g., learning to cook or drive) as a top priority for their future – yet few existing services support adults’ self-improvement goals. We explore the implications of these findings for service development. State and federal policies, for example, should expand funding for programs supporting life skills training and self-determined goals. Such policies should be especially prioritized in emerging adulthood, as autistic individuals first take on adult responsibilities.