Transition of Adults with Autism Spectrum Disorders in the U.S. and China: Lessons Across Cultures

Background:

Recent developments in both China and the US have led to changes in service opportunities for adults with developmental disabilities (People First Transformation, 2016; Swanson, 2014; Xu, Dempsey, & Foreman, 2014). While many of these changes are positive, and have led to increased choices in services, it is unclear how adults with disabilities and their families are actually experiencing these policy and service changes. While some research has presented examples of intervention programs designed to help students with developmental disabilities transition from high school to adult life (Hagner, Kurtz, Cloutier, Arakelian, Brucker, & May, 2012), other very recent research in the US has found that families experience the transition to adult services to be a stressful process with many unmet needs (Cheak-Zamora, Teti, & First, 2015). In China, there is less research about adults with disabilities; what is available indicates that while adult benefits and services previously were often on a case-by-case basis (McCabe & Wu, 2010), there is increasing attention to vocational programs and adult services (Xu, et al., 2014). 

Objectives:

At a time of transition in service provision systems in both countries, this study examines the perspectives of beneficiaries of services and service providers, to understand the advantages and challenges that exist in these different services systems (China and the United States). This research investigates the lives of adults with autism and/or intellectual disabilities in China and the United States to gain an in-depth understanding of disability and disability services in adulthood from the perspectives of important stakeholders, including the person with a disability, parents and other family members, current and past service providers, and other important members of each individual’s life.

Methods:

This research uses a qualitative multiple case study approach (e.g., Yin, 2009) focusing on the experiences of eleven (5 US, 6 China) transition-age adults with developmental disabilities and their families and service providers. Interviews were guided by semi-structured interview protocols and lasted up to an hour and a half.

In addition to interviews, document analysis was conducted with relevant policies, as well as brochures, reports, and websites from any disability-relevant agencies with which the family is involved.

Results:

Qualitative analysis of data led to three main themes. First, there is a tension between promoting the right to make one’s own decisions versus supporting emerging adult role & responsibilities. Second, while parent advocacy is essential and makes a difference, there are limits. Adult outcomes are varied, especially in China, due to local services (or lack of), and parent efforts. Finally, results indicate some of the emerging impacts of policy changes in US and China, including advantages and continued challenges.

Conclusions:

 There are some similar experiences of adults with autism in China and the United States, but due to different policy and educational contexts, the specific nature of the experiences and challenges differ. Together, the experiences of participants in the study indicate that finding best practice solutions for adult services is an ongoing issue, and lessons are to be found in both countries.