Autism In An American Indian and Alaska Native Sample: The Contribution of Demographic Characteristics, Levels of Acculturation, and Cultural Values and Beliefs on Service Utilization

Background: Autism prevalence rates are assumed to be unbiased across ethnicity.  However, the prevalence of identified cases of autism within the American Indian and Alaska Native population in California is much less than that observed for other ethnicities and lower than the expected rate.  American Indians / Alaska Natives (AI/ANs) with autism are virtually absent from scientific literature yet the AI/AN literature regarding general healthcare supported that AI/ANs may experience barriers that result in less frequent reporting to or accessing services from a state agency for autism. 

Objectives: The objective of this study was to examine the contributions of cultural characteristics of the AI/AN population with respect to the utilization of state-funded services for autism spectrum disorder.  More specifically, this study compared the AI/AN population to the Hispanic population; an ethnic population most similar in cultural characteristics yet with a much higher identified prevalence rate of autism. 

Methods: This study collected data from the AI/AN population, diagnosed with autism and registered with the California Department of Developmental Services (DDS).  The data was examined in comparison to a control group of similar cultural characteristics (Hispanics) yet with a much higher rate of autism reported to DDS.  Data was collected from DDS records and survey information from the identified populations.

Results: Participants were 37 people with Autism Disorder, recruited from the registry of the California Department of Developmental Services and identified as consumers of services coordinated by the California Regional Center System: American Indian and Alaska Native (n=18) and Hispanic (n=19). All participants were age 3 years or older, with a diagnosis of Autism.  Aside from the difference in reported rates of autism, the study found no differences in cultural characteristics between AI/ANs and Hispanics but rather similarities: the number of services received for autism, the age of autism diagnosis, the geographic distance traveled to access services and beliefs regarding the cause and treatment for autism.

Conclusions: It was found that AI/AN and Hispanic groups reported similar cultural characteristics in regards to autism as supported by the literature.  Although similar characteristics were found, there remains a discrepancy regarding the prevalence rate of autism found within the two groups.  This study was a first attempt to look at possible reasons why AI/AN population may be under-identified with autism and future research is needed in order to answer this question.