Access to Autism Information and Services for Korean American Families of Children with ASD

Background:

Koreans are the fifth largest Asian group in the U.S., but are still underrepresented in autism studies examining service disparities. Often, Koreans are not included in these studies (Liptak et al., 2008) or collapsed into “others” or “Asian Americans” (Thomas et al., 2007; Mandell et al., 2009). These umbrella terms mask cultural differences within Asian Americans and their unique needs in accessing autism services.

The Korean culture is highly collectivistic and tends to stigmatize mental health issues, discouraging families from accessing appropriate services (Papadopoulos, Foster, & Caldwell, 2013). A large-scale study found Korea’s ASD prevalence to be a staggering 1 in 38 children, but many were untreated or misdiagnosed due to stigma (Kim et al., 2011).

Limited English proficiency is associated with underutilization of services and reliance on online help (Spencer & Chen, 2004). Grinker et al. (2015) found that Korean mothers consulted Korean websites as their primary ASD information source due to language barrier.

Experiences of Korean families of children with ASD need to be examined in order to address service barriers and underrepresentation of Koreans in autism research.

Objectives:

The goal of this study was to explore barriers in accessing autism services and potential solutions for Korean American families.

Methods:

Semi-structured focus groups were conducted with 13 Korean mothers of children with ASD recruited in Los Angeles and Sacramento, CA. Participants were first generation immigrants, whose length of time lived in the U.S. ranged from 10 months to 27 years. Focus group sessions were scribed, audio-recorded, and transcribed.

Dedoose software was used for qualitative coding of the transcripts. Coders were trained until interrater reliability was established. Discrepancies in the codes between the coder and a second reviewer were reconciled through consensus.

Results:

Language barrier and lack of social support were common themes. Even the most acculturated parents preferred bilingual therapists but had minimal success in finding them. Pediatricians’ and parents’ lack of autism knowledge, and elders in the family and professionals reassuring parents to “wait and see” were barriers to receiving a diagnosis. Other challenges included long waiting lists for services and being unfamiliar with the system. Some parents mistrusted Korean pediatricians, but still resorted to going to them due to language barrier.

Parents found other parents of children with ASD and Korean websites helpful. However, these websites were discussion forums where information is not monitored for accuracy. Parents agreed that autism education for pediatrician and parents is needed. Many wanted a website containing information about local bilingual providers, services organized by child’s age, and other autism resources in Korean.

Conclusions:

As all participants were first generation immigrants, their biggest challenges were language barrier and lack of social support. In particular, language affected multiple domains directly related to service access, such as obtaining knowledge, selecting providers, and advocating for themselves. As a potential solution to mitigate these issues, parents recommended development of a Korean website with detailed information about services.