OARacle Newsletter

Autism is a complex, neurodevelopmental disability that affects many U.S. children and requires access to services and interventions to allow autistic children to thrive. Latinx, Black, and American Indian or Alaska Native families with autistic children face unique challenges related to disparities in access to services. Those disparities, along with lack of health care access and poor clinical encounters, often result in reduced services for autistic children and their families.

In her 2020 OAR-funded study, Parents Taking Action to Improve Autism Services Access for Navajo Families in Northern Arizona, Olivia Lindly, PhD, MPH, examined the feasibility of an intervention that could potentially reduce barriers to care for Navajo (Diné) parents and their autistic children. Dr. Lindly is an associate professor in the Department of Health Sciences at Northern Arizona University.

Coconino County in Northern Arizona where she conducted the study has an estimated 39,478 American Indian residents, with Navajos comprising the largest segment. The goals of the study were to: 

• Conduct focus groups or interviews with Diné parents/guardians of autistic children to generate new knowledge about their experiences raising autistic children.
• Adapt Parents Taking Action (PTA), an evidence-based intervention that employs community health workers, for Diné families with autistic children.
• Conduct a pilot trial of the adapted intervention to determine its feasibility and acceptability with Diné parents of autistic children ages 2-12 years.

While the results of the intervention were not available as of this newsletter’s publication, the researchers did report on the adaptation of PTA for Diné parents.

Methodology

A community advisory board provided input and feedback throughout the study. Participants included four Diné parents as well as professionals who provide services for autistic children. The research team enrolled and interviewed 15 Diné parents to take part in a survey and an interview. The research team collected demographic information through the surveys and used the interviews to better understand parents’ experiences accessing autism diagnostic and treatment services, as well as ways in which they thought that access to autism services could be improved on the Navajo Nation.

The research team adapted Parents Taking Action (PTA), originally developed for Latinx parents with intellectually and developmentally disabled children, including autistic children, for Diné parents. PTA relies on training parents of older autistic children to lead the lessons for parents with younger autistic children, all of whom share a common ethnicity. Results from several studies showed significantly improved child and parent outcomes, including improved child social communication, maternal confidence, and frequency in the use of evidence-based practices and number of evidence-based services received by the autistic child.

Fourteen participants were enrolled in the program and five Diné parents were trained to serve as family advisors delivering the program. The advisors worked on the intervention with two to four parents in participants’ homes or virtually through a series of one- to two-hour sessions delivered weekly or at other agreed-upon intervals. The content included understanding the diagnosis of ASD, identifying evidence-based treatments, and learning advocacy skills and evidence-based approaches to enhance social communication skills and manage behaviors.

Of the 14 participants initially enrolled, seven completed all 12 lessons, two completed eight lessons, one completed seven lessons, another completed five lessons, and three had to withdraw from the program. Project staff contacted the family advisors weekly to check on their progress. Evaluation data including parent surveys, fidelity checklists, and qualitative data gathered from the family advisors and parent participants are now being analyzed to report on the intervention’s feasibility.

Outcomes

PTA delivery: Interview participants preferred that another Diné parent with an autistic child who has experienced living on the Navajo reservation deliver the program. The family advisors created a bond with pilot participants, because of similarities in racial backgrounds and lifestyles as well as difficulties with accessing resources due to the rural areas they live in. Participants also reported that Diné parents with an autistic child need support groups.

PTA content: Parents reported that one of the most useful lessons was the one that described autism and common behaviors. The Diné culture, similar to other indigenous cultures, does not have a word for disability and recent publications are not often accessible to Diné families. The description of autism in the Diné language in the adapted PTA manual may help to guide an understanding of what autism is for native Diné speakers.

Many families do not understand autistic behaviors and characteristics and hear the diagnosis from a non-native doctor, leaving Diné parents overwhelmed with new information. In interviews, parents thought that communicating in their own Diné language would help them better understand autism.

Adaptations: Materials were culturally and linguistically adapted to help parents connect with the content. The research team adapted the PTA program with feedback from the Diné parents  who participated in the survey and interviews and served on the community advisory board. For example, the researchers changed pictures, videos, and stories in the manual to include names and narratives from the community and Diné culture.

Practical Findings

No prior autism intervention work has focused on Diné families. This project helps to advance the evidence base by describing Diné parents’ lived experiences and preferences for autism intervention. Although small in scale, this project generated useful information that can be used to inform and shape similar parent education and training programs on Diné and in other tribal communities.

This study provides new knowledge on adapting an evidence-based parent education and training program to be culturally responsive. The findings may aid health professionals and policy makers in their efforts to help support families that have an autistic child in Diné and other Indigenous communities. In applying similar types of community-engaged, culturally responsive models of family-oriented education and training, progress toward equitable health outcomes for children may be better sustained and spread. 

Sherri Alms is the freelance editor of The OARacle, a role she took on in 2007. She has been a freelance writer and editor for more than 20 years.