Future Service Planning for Korean-American Parents Raising Children with Autism Spectrum Disorder (ASD)

Background: The transition to adulthood is an ongoing process that starts in early childhood and continues through adolescence. Individuals with autism spectrum disorder (ASD) and their families can experience unique challenges during transition periods. Parents’ future service plans for their children vary by culture. In the U.S., independence and autonomy are dominant values in adulthood, which shape expectations for social services for adults with ASD. However, parents from minority ethnic groups in the U.S. often hold different values and views of services designed to support these transitions.

Objectives: This study examines future service planning among Korean-American (KA) parents raising children with ASD in the U.S.

Methods: We utilized a qualitative, in-depth interview method. Fourteen first-generation KA parents (10 mothers; 4 fathers) participated in the study. The average age of the children was 16.1 years (SD=7.2). All children resided in parents’ homes in the southeast U.S. None of the adults with ASD (n=4) were employed. The semi-structured interviews ranged from 60-90 minutes. We conducted a thematic analysis of the interview transcripts concurrent with data collection to develop primary themes.

Results: We identified three themes. First, all of the mothers placed a low value on their child’s future independence. They preferred their children live at home as long as possible. However, this was a point of conflict with fathers in the study, who primarily hoped to develop plans for their child’s independence. Nonetheless, both fathers and mothers indicated a desire to employ their children in their own businesses in the future, rather than in outside employment.

Secondly, few parents utilized mainstream services for their children with ASD. KA parents who resided in America for more than 20 years reported that they used mainstream services when their child was young, but encountered challenges, such as food aversions or high costs, in adult day programs or group homes. Some parents indicated a preference for Korean service providers. However, several participants reported that their state family support funds could not be used for a day program administered by their Korean churches.

Lastly, some participants, particularly recent immigrants or those who lived in areas without a large Korean community, lacked information and support regarding service planning. All parents of older adolescents or adults indicated that their final IEP meeting did not provide their child with an adequate transition plan. Some parents considered returning to Korea, where they perceived vocational training was more comprehensive.

Conclusions: Parents need support to navigate an increasingly complex service system as their children transition to adulthood. Participants, especially mothers, expressed a cultural mismatch with the individually focused U.S. service system. More funding for parents caring for their children at home, or with the support of community-based providers, is necessary. Furthermore, training ASD service providers to be culturally responsive to the needs of ethnic minority individuals with ASD and their families is critically important. KA parents who recently immigrated or who do not live in a large KA community might need more assistance to care for their children throughout their lifespan.