OARacle Newsletter

The number of autistic Asian Americans has been rising rapidly. The Centers for Disease Control and Prevention reports that the rate of autism among Asian-American children is higher than other racial groups. Although the reasons for this increase are unclear, it is well-known that Asian American caregivers of autistic children face multiple barriers in accessing services.

It is also important to note that Asians living in the United States are a heterogeneous group from diverse backgrounds. Korean Americans, for example, represent one of the largest Asian ethnic groups, with their own unique culture, language, and immigration history. While major cities like Los Angeles, New York, and areas in Virginia have the largest Korean populations, there are also Korean immigrants in areas with fewer Korean communities, such as Louisiana and South Carolina. Major barriers for Korean immigrants accessing services include cultural differences, language challenges, stigma, and geographic location.

If you are providing parental support for Korean immigrant caregivers, it is essential to consider these barriers. Having offered a virtual peer-led education program, Parents Taking Action (PTA), to Korean immigrant caregivers of autistic children nationwide, I would like to share some insights on best practices. PTA is designed to provide essential information for caregivers of young autistic children. The 14-week program introduces strategies based on applied behavior analysis to improve symptoms and address challenging behaviors, as well as provide guidance on social support, school advocacy, and more. PTA is delivered by peer leaders who are also Korean immigrants raising older autistic children. In addition to providing information, peer leaders share their own experiences with participating caregivers, creating a supportive and relatable learning environment.

What to Consider When Providing Parental Support 

Offer support in their primary languages: Regardless of how long they have lived in the United States or how fluent they are in English, many Korean caregivers feel more comfortable and receptive to information in their primary languages. Program participants shared that while they already knew some information, learning it in Korean changed their behaviors and perspectives. If having Korean-speaking providers is not feasible, well-trained translators are helpful. At a minimum, provide written materials in Korean for caregivers to read and understand at their own pace.

Train parents to become mentors and connect based on child’s symptom severity: Korean caregivers of autistic children are often well-connected through autistic parent groups, associations, or personal networks, sharing experiences and offering informal mentoring. When recruiting peer mentors for our program, I found a strong interest among Korean immigrant caregivers in receiving structured training to become a mentor. They are committed to education and eager to support other immigrant caregivers. Matching parents based on their children’s symptom severity is crucial, as it enables them to share similar experiences and avoid discouragement.

Use less stigmatizing outreach methods: Korean caregivers may be reluctant to disclose their children’s autism, particularly if symptoms are mild and children are verbal and have intellectual abilities. Due to cultural stigma toward disability, they may worry about loss of face, potential impact on other siblings’ futures, or negative effects on their autistic children. As a result, Korean caregivers often seek information through online immigrant communities that ensure anonymity. Outreach efforts should respect this preference for privacy; consider posting information in online communities, which also benefits caregivers in areas with fewer Korean resources.

Help them understand culturally different perspectives: In Korean culture, teachers or professionals are highly respected, and it is often seen as inappropriate for caregivers to question or make requests of them, as they generally hold high authority. Our program covered various topics like evidence-based strategies for symptom improvement and advocacy in school, which many parents found invaluable. They learned that advocating for their child’s needs is their right and received practical tips on preparing for Individualized Education Program (IEP) meetings and building collaborative relationships. This approach empowers parents to take an active role, not only in school settings, but also in interactions with therapists and other professionals.

Parental support programs that target racially and linguistically diverse families can improve caregivers’ confidence and provide much-needed encouragement.

Irang Kim, Ph.D., is an assistant professor at Tulane University School of Social Work. Her research focuses on addressing racial and linguistic disparities in support for autistic children and their families. She recently completed a pilot study on the cultural adaptation of a peer-led parent education program, funded by OAR’s Applied Research Grant.