Autism in Indian Country

AFO Board member and DEI Officer Dr. Crystal Hernandez was recently asked to submit a public comment for the upcoming Interagency Autism Coordinating Committee (IACC) in regard to Autism in Indian Country. It is imperative to have services and supports that are culturally relevant for our various Tribal Nations throughout the United States, including the many Tribes in Oklahoma. With this public comment, there are hopes of true inclusion in decisions, funding, conversations, and action.

My name is Dr. Crystal Hernandez, I am an autism mother and ally, Cherokee and Latina. I serve as a Tribal mentor parent, serving on support groups and panels, working with local and national organizations on Tribal inclusion projects and research. I see and hear the stories of grandparents and parents, communities, and individuals struggling to find suitable service and varied treatment for their Autistic loved ones. I see continued disparities in access to quality care within communities, underrepresentation, and cultural exclusion. We must do better. It is a pivotal moment in our world, where Tribal Nations are not just being looked at, but rather are starting to be seen and included. But there is still much work to be done. Autism in Indian Country is overwhelmingly underrepresented in national and state data, due to non-inclusive methods of measurement and often distrust of the measuring systems. We must focus on improving culturally relevant diagnostic tools and screening instruments and train in meaningful ways, those working within the field on cultural humility and responsiveness. There needs to be a focus on embedding appropriate culturally relevant screening practices in a variety of conventional and unconventional settings, such as health clinics, daycares, community centers, nutrition programs, head starts, and behavioral health care settings. A focus on community and extended family compositions in system build and design is desperately needed. We must change the narrative within communities and learn from those walking the journey. Representation matters in all the places where decisions are made, not just in theory, but in continued practice. There is a great need to improve access to care in community settings, meeting the person where they are, removing barriers to treatment and support. We must look beyond gap analysis and instead focus on actionable items for a continued system overhaul. We need to allow culturally-rooted care to be viewed with the same fidelity and reimbursements that other mainstream treatments are. Giving honor to language, customs, beliefs, values, and practices is the only way forward. The vast array of Tribal Nations throughout the United States is not here to be served, but rather is here to be part of building meaningful systems of service. Thank you, Crystal Hernandez, Psy.D., MBA

Learn more about the IACC at: https://iacc.hhs.gov/