Advancing Hózhó in Autism Assessment (AHAA) for Diné Families

ABSTRACT Indigenous children, including those who identify as Diné (Navajo, meaning “The People”), have inequitable access to autism spectrum disorder (ASD) diagnosis and treatment services. ASD is a neurodevelopmental condition, which can be diagnosed in early childhood. The objective of the Advancing Hózhó in Autism Assessment (AHAA) for Diné Families study is

to develop recommendations to ensure that ASD assessment practices and the context in which assessments occur are culturally responsive. Assessment practices and contexts encompass the assessment experience for Diné children and parents/guardians. This study is aligned with the National Institute of Mental Health’s strategic plan to advance equity in ASD services and

outcomes, as well as the recommendation of the Lancet Commission on the future of care and clinical research in autism to prioritize research strategies that have an emphasis on “understanding what interventions work, for whom, when, how, and with what general outcomes.” Our central hypothesis, substantiated through research examining practitioner confidence

and expertise in working with diverse children and families,6 is that a lack of culturally responsive ASD assessment practices along with the contexts in which assessments occur for Diné children and parents/guardians contributes to inaccurate ASD diagnosis and inequitable ASD services access. Our long-term goal is to ensure that ASD services are culturally

responsive for Diné families and to reduce persistent ASD inequities for Indigenous communities. Aim 1: Determine how ASD assessment practices and the assessment context align or misalign with cultural beliefs, including Hózhó, among Diné families by conducting interviews with 15 Diné parents/guardians of children ages 2-6-years who have experienced ASD

diagnosis in the last 12 months. Aim 2: Describe practitioner perspectives on how ASD assessments are conducted with Diné families including cultural adaptations made or not made through interviews with 15 ASD practitioners and a survey of 55 ASD practitioners. Aim 3: Identify the cultural adaptations made by interdisciplinary ASD assessment

teams with Diné children and their participating parents/guardians through the observation of 10 assessments with Diné children ages 2-6.