VFAAB: Supporting Vietnamese Families on Their Autism Journey

The Vietnamese Family Autism Advisory Board (VFAAB) is a community-informed organization partnering with HopeCentral Pediatrics and Behavioral Health to support low-income Vietnamese families with children with autism spectrum disorder/developmental delay (ASD/DD). HopeCentral is a 501(c)3 nonprofit pediatric primary care practice that has been a primary care medical home for the linguistically and economically diverse neighborhoods of Southeast Seattle since 2013. HopeCentral's inclusive mission is to provide excellent evidence-based pediatric care for everyone in the community, regardless of religion or economics, reserving 50% of its patient panel for patients with Medicaid. VFAAB grew out of this opportunity to serve.

VFAAB emerged following a series of Vietnamese community convenings in 2017 at Seattle Children’s Autism Center. Parents, professionals and community leaders gathered and identified difficulty finding ASD/DD-specific care as among the major challenges facing the Vietnamese community. VFAAB currently operates as a community-led organization of HopeCentral. VFAAB helps under-resourced Vietnamese families with children with ASD/DD to participate fully in the medical system by bridging cultural gaps and connecting to services.

VFAAB’s culturally and linguistically matched program model consists of four major components:

1. Clinical case management with navigators assisting patients at HopeCentral to connect to medical and social services
2. Warm connections with peers through quarterly social celebrations and monthly family support meetings
3. Small group evidence-based parent education classes (Small Steps 101, Small Steps 102 and Little Smiles) taught in Vietnamese
4. Connections to trusted resources through translating materials for other organizations and maintaining our website

VFAAB is culturally responsive programming built on robust relationships with the community and a close partnership with HopeCentral and other partnering organizations. VFAAB is a community-informed organization that is culturally rooted in our community. We conduced focus groups in 2019 and 2020 to hear from our Vietnamese community. Participants articulated six specific barriers that are reflected in VFAAB’s work. These 6 community barriers are:.

1. General lack of awareness of ASD and other causes of DD prevents families from raising developmental concerns with their doctors.
2. When parents have a developmental concern, significant shame prevents families from seeking evaluation or ongoing care and from being able to socially participate in their community.
3. Clinicians who identify children with ASD/DD lack knowledge of appropriate referral pathways.
4. Families and clinicians are discouraged from seeking services by long wait times for diagnosis and therapy, and by the complexities in navigating school accommodations.
5. Few Vietnamese-speaking clinicians offer therapeutic and support services.
6. A diagnosis of ASD/DD often requires a parent to stay home with the child, resulting in a decline in income and significant sacrifice in a culture that strongly values work outside the home

VFAAB staff are culturally rooted in the Vietnamese community we serve by accepting invitations to participate in Vietnamese events such as the Tet in Seattle Health Fair and other fairs hosted by the Vietnamese American Community of Seattle and Sno-King Counties and the Vietnamese Martyrs Catholic Church; the Mid-Autumn Moon Festival (Vietnamese Cultural Center); and the Black April Commemoration of the Fall of Saigon (Vietnamese American Community of Seattle). These community gatherings provide space to raise ASD/DD awareness with a larger audience that lays the foundation for VFAAB to propose developmental screenings and inform parents of our educational offerings at these community events.

VFAAB leadership is fluent in the needs of the Vietnamese community, especially for first-generation immigrant families. The current VFAAB staff are Vietnamese refugees who have personally experienced struggles in reestablishing life in a new country. The staff’s lived immigrant experiences are similar to those they serve. Shared language and experience foster trust and empower families in decision-making in the clinic setting. VFAAB's program helps to close service gaps, working to achieve meaningful outcomes for under-resourced families.

Dr. Thanh is the primary clinician for VFAAB and one of two Vietnamese clinicians in the state of Washington providing ASD evaluations for children on Medicaid. In addition, Dr. Thanh serves as the executive director of VFAAB and has been instrumental in cultivating relationships with Vietnamese-led organizations across Puget Sound, including the Vietnamese Health Board; Helping Link; Vietnamese Physicians, Dentists, Pharmacists Association of Washington State; and the Vietnamese American Community of Seattle and Sno-King Counties; the Vietnam Health Clinic; and the Vietnamese Cultural Center. Our focus groups confirmed that the Vietnamese community respects physicians for their clinical assessments, and recommendations from trusted providers are highly influential. Dr. Thanh cultivates relationships with Vietnamese clinicians to expand their capacity to diagnose and treat ASD/DD and to educate their patients. VFAAB believes that developing an informed cadre of Vietnamese-speaking physicians will help to eliminate delays in ASD/DD diagnosis and entry to care for children in the community.

VFAAB realizes that to decrease the stigma associated with autism, we must help change the landscape. In April 2023, during Autism Acceptance Month, VFAAB hosted our inaugural Autism Education Day for the community. This event featured presentations and brought together families, community leaders, partnering organizations, legislators, healthcare providers, panel speakers and the press. The event was a success, and VFAAB decided to host the 2nd Annual Autism Education Day in April 2024. Last year, participating tabling organizations included Vietnamese Health Board, the Washington State Developmental Disabilities Council (DDC), the Washington State Developmental Disabilities Administration (DDA), The Arc of Washington State, The Arc of King County, Seattle Children’s Autism Center, Boyer Children’s Clinic, HopeCentral Pediatrics, the Office of the Education Ombuds, PAVE, Disabilities Right Washington and Opal. With another successful event, VFAAB has made it a recurring annual tradition to offer knowledge, community and support for autism in our community.