RESUMEN
Background: Racial/ethnic disparities in access to diagnostic services are pervasive for autistic children. However, a few studies have examined racial/ethnic health disparities among autistic adults, who commonly experience higher rates of health conditions than non-autistic adults. We aimed at examining the intersection of autism and race/ethnicity in association with psychiatric and medical diagnoses. Methods: The study population included adult members of Kaiser Permanente Northern California enrolled from 2008 to 2012. We ascertained 1507 adults who had an autism diagnosis documented in their electronic medical records. We sampled a matched control group of adults without an autism diagnosis (N = 15,070) at a 10:1 ratio. Our sample was 46% White, 17% Hispanic, 16% Asian, 7% Black, and 14% other race/ethnicity. We compared health diagnoses (a) between autistic and non-autistic adults within strata of race/ethnicity and (b) across race/ethnicity within strata of autistic and non-autistic adults. Lastly, we examined the interaction between autism and race/ethnicity on both multiplicative and additive scales. Results: Autistic adults were more likely to be diagnosed with most medical and psychiatric conditions compared with their non-autistic counterparts of the same race/ethnicity. Among autistic adults, Black, Hispanic, and Asian adults were less likely to be diagnosed with psychiatric conditions and Black and Hispanic autistic adults were more likely to be diagnosed with obesity than their White counterparts. In interaction models, we found that adults who were Black and autistic were disproportionately less likely to be diagnosed with psychiatric conditions and autoimmune disease and more likely to be diagnosed with hypertension than expected. Conclusion: Health vulnerabilities may be compounded at the intersection of autism and race/ethnicity. Future research should continue to apply an intersectional lens toward understanding and addressing these disparities. Our findings likely underestimate the health disparities that exist in uninsured autistic adults and those living in other parts of the United States.
Why is this an important issue?: Very few studies have looked at how the combination of a person's autistic and racial/ethnic identities affects their health in adulthood. Dual experiences of ableism and structural racism may have a larger negative effect on the health of autistic people of color than either one experience alone. It is important to identify potential health disparities so that they can be addressed. What is the purpose of this study?: We wanted to understand whether autistic adults of color were more likely to be diagnosed with medical and psychiatric conditions than non-autistic and/or White peers. What did the researchers do?: We studied a diverse group of 1507 autistic adults and 15,070 non-autistic adults who all received health care from the same large, health plan in California. We examined electronic health records to determine whether diagnoses of health conditions differed by autism status and race/ethnicity. We then looked at whether autistic people of color were disproportionately diagnosed with these conditions compared with other groups. What were the results of the study?: Within every racial/ethnic group, autistic adults were more likely than non-autistic adults to be diagnosed with most medical and psychiatric conditions. Among the autistic group, Black, Hispanic, and Asian adults were less likely to be diagnosed with psychiatric conditions compared with White adults. We saw similar differences in psychiatric diagnoses by race/ethnicity among non-autistic adults. Further, the diagnostic patterns among adults who were autistic and Black suggested that this group may experience unique difficulties receiving mental health and autoimmune diagnoses. They also may be at a higher risk of hypertension. What do these findings add to what was already known?: Previous studies have found racial/ethnic disparities in both mental health and access to health care among autistic children. This study suggests that racial/ethnic disparities, especially in mental health care, may also exist among autistic adults. What are potential weaknesses in the study?: As a broad social label, race/ethnicity does not tell us much about people's lived experiences. Future studies should replace race/ethnicity with more useful measures of our social environment, including economic opportunity and experiences of structural racism. In addition, health records may imperfectly represent the actual occurrence of health conditions. For example, we cannot tell from this study whether autistic people of color actually experience fewer psychiatric problems, are less likely to visit the doctor, or are more likely to have their problems missed by doctors. Lastly, because our findings are from an insured population, we have likely underestimated the health disparities that exist among autistic adults who do not have consistent insurance coverage or health care access. How will these findings help autistic adults now or in the future?: We hope this study highlights the need for greater attention to the unique health risks at the intersection of autism and race/ethnicity in adults. Through more research and advocacy, we can increase awareness and understanding of these potential health disparities. This will lead to changes that promote more equal access to health care and greater well-being among autistic people of color.
RESUMEN
As the rates of Autism Spectrum Disorder (ASD) increase and early screening efforts intensify, more toddlers with high likelihood of ASD are entering the United States' (US') publicly funded early intervention system. Early intervention service delivery for toddlers with ASD varies greatly based on state resources and regulations. Research recommends beginning ASD-specific evidence-based practices (EBP), especially caregiver-implemented intervention, as early as possible to facilitate the development of social-communication skills and general learning. Translating EBP into practice has been challenging, especially in low-resourced areas. The main goal of this study was to obtain a more comprehensive understanding of public early intervention system structure, service delivery practices, and factors influencing EBP use for children with ASD in the US. Participants (N = 133) included 8 early intervention state coordinators in 7 states, 29 agency administrators in those states, 57 early intervention providers from those agencies, and 39 caregivers of children with ASD receiving services from those providers. Online surveys gathered stakeholder and caregiver perspectives on early intervention services as well as organizational factors related to EBP implementation climate and culture. Stakeholders identified key intervention needs for young children with ASD. In general, both agency administrators and direct providers reported feeling somewhat effective or very effective in addressing most needs of children with ASD. They reported the most difficulty addressing eating, sleeping, family stress, and stereotyped behaviors. Data indicate that children from families with higher income received significantly higher service intensity. While administrators and providers reported high rates of high-quality caregiver coaching (>60%), caregivers reported low rates (23%). Direct providers with more favorable attitudes toward EBP had greater EBP use. In turn, provider attitudes toward EBP were significantly associated with implementation leadership and culture at their agency. Results suggest that publicly funded early intervention programs in the US require additional resources and training for providers and leaders to support improved implementation climate and attitudes toward ASD EBPs. Results also suggest that more state system support is needed to increase use of ASD-specific EBP use, including high-quality caregiver coaching, to better serve toddlers with ASD. Recommendations for implementation strategies are addressed.
RESUMEN
Please note that the middle name of coauthor Francisco Reinosa Segovia was misspelled (as "Rienosa") is this article as originally published.
RESUMEN
Decades of research have established that racial ethnic minority, low-income, and/or non-English speaking children with autism spectrum disorder (ASD) are diagnosed later than white children, and their families experience greater difficulty accessing services in the USA. Delayed access to timely diagnosis and early intervention may impact child outcomes and family quality of life. Despite their cognition of these disparities and their significant impact on the lives of those affected, explanations for the barriers experienced by underserved families are elusive, likely due to the complex interaction between structural and family factors. This study used qualitative methods to gather family and provider perspectives of perceived barriers and facilitators to obtaining an ASD diagnosis and accessing ASD-related services for underserved families. Themes from focus groups and interviews with families from three cultural groups (black, Hispanic/Latino, and Korean) and three primary languages (English, Korean, and Spanish) highlight specific barriers related to family, community, and systemic challenges as well as facilitators to accessing care for these populations. Family experiences are expanded upon with viewpoints from the providers who work with them. Recommendations are made for reducing disparities in the existing ASD service system including increasing professional, family, and community education; increasing culturally responsive care; improving provider-family partnerships; and addressing practical challenges to service access.
