Health Equity and Rising Autism Prevalence: Future Research Priorities

The Centers for Disease Control and Prevention recently released new data showing the estimated overall prevalence of Autism Spectrum Disorder (ASD) in 8-year-olds is now 1 in 36 – a more than a fourfold increase since 2000.1 Although the rising prevalence of autism has garnered much interest over the years, diagnostic equity has also been a major research and clinical concern in the autism community. A considerable body of literature from the early 2000s demonstrated that Black, Hispanic, and Asian autistic youth were diagnosed significantly less often than white youth.1 Although this diagnostic disparity has decreased over the past few years, the most profound shift came with recent 2020 prevalence estimates. According to these data, Black and Hispanic/Latine youth now have a higher prevalence of ASD than white youth, and ASD prevalence was also associated with lower socioeconomic status for the first time.1 The Autism and Developmental Disabilities Monitoring Network suggested that these shifts are likely because of improvements in screening and service access for marginalized groups.1Although there is no definitive data on why diagnostic disparities previously existed, some data suggest geographic distribution of diagnostic centers, structural racism, community stigma, and provider bias have contributed to these inequities.2 Data on how these disparities have been mitigated over time are scant, but some have suggested national efforts to disseminate autism screening and health equity specific screening initiatives.3 Regardless of the specific cause, closing this diagnostic gap is a successful case of health equity-related educational, research, and advocacy efforts from the autism community. Nevertheless, efforts made toward timely diagnosis are still critically important, particularly surrounding co-occurring diagnoses of autism and intellectual disability; findings from the Autism and Developmental Disabilities Monitoring Network also demonstrated that Black autistic children (50.8%) are more likely to be classified as having an intellectual disability than Hispanic/Latine children (34.9%) and white children (31.8%).1 These findings may point to a disparity in early identification of autism in Black children without an intellectual disability.1 Moreover, a greater proportion of autistic children who are diagnosed with intellectual disability are also more likely to reside in underserved communities that have less access to autism services.4 Taken together, these data highlight the importance of building capacity for autism service provision in under-resourced settings, particularly because a disproportionate amount of autistic children with intellectual disability reside in these settings, many of whom are Black.We argue here that these data also indicate an immediate need to optimally support autistic people from minoritized racial and ethnic groups and their families after they obtain a diagnosis, as efforts in the domains of service quality and workforce development require urgent attention. Data on initiatives to support equity after diagnosis are very limited. Indeed, a recent systematic review concluded that Black, Latine/Hispanic, and Asian autistic people have less access to, and lower utilization of, healthcare services.5 Research and advocacy is urgently needed to ensure equitable access to initial postdiagnostic services, family support, and transition care for this wave of diagnosed autistic people from minoritized communities. In this paper, we suggest 4 priority areas for the next phase of autism health equity research and advocacy, and we call on the community to get to work.Autism-related services span multiple disciplines and can include physical and behavioral health services, educational services, and employment services. A recent systematic review outlined several factors that contribute to service quality disparities for racially and ethnically marginalized families,5 including language barriers, racist and classist interactions with service providers, limited cultural matching between families and providers, and long waitlists for services in urban areas.6 Although these challenges have been well documented, there is a dearth of research examining how to improve service quality and optimally support service systems to deliver equitable care for autistic individuals. Future research and clinical endeavors could focus on increasing equity within service systems via stepped care models and increased access to lay and nonspecialist service providers, increased attention to measuring the social validity of interventions and their effects on quality of life, and increased access to scalable and relatively low-cost interventions (eg, group parent coaching models for families on waitlists, educational interventions in general education classrooms that support inclusion).Sociodemographic factors, such as race and ethnicity, continue to be underreported in autism intervention research. A large-scale systematic review of evidence-based services for autistic individuals found that only 25% of studies reported on race and ethnicity, and autistic participants from each of the following minoritized racial and ethnic groups were under-represented in studies included in the review: Asian (6.4%), Black (7.7%), Latine/Hispanic (9.4%), Middle Eastern (1.2%), Native American (<0.1%), Native Hawaiian or Pacific Islander (0.1%), multiracial (3.8%), combined (eg, “non-white”; 9.0%).7 Underrepresentation of minoritized autistic people in research results in limited empirical guidance for providing evidence-based interventions and services, as well as for identifying and measuring culturally relevant outcomes. In fact, early attrition from interventions and reduced service utilization has been linked to demographic factors, such as race and ethnicity,4 indicating a mismatch between services and minoritized groups. This highlights a need to increase research with representative and diverse samples. Including key collaborators with lived or shared experiences of autism in minoritized communities can help identify research priorities to examine meaningful intervention targets and outcomes.8 This will help develop and tailor evidence-based practices and inform policies that bridge gaps in service use.The autism workforce is small and highly underprepared to meet the needs of these individuals and families. Research using geospatial data suggests that there are “service deserts” in under-resourced rural and urban neighborhoods with high levels of poverty9; these service deserts are characterized by few autism clinicians in a given area relative to population distribution. In fact, some highly under-resourced urban areas (eg, Detroit) are classified as service deserts, despite being located in very close proximity to “service oases” in wealthy suburbs in the same region.9 Families in rural areas also have to travel significantly greater distances to access autism clinicians than those in urban and suburban areas.9Not only are there massive workforce shortages, but there is a dearth of autism clinicians from minoritized racial and ethnic backgrounds, particularly those who speak languages other than English.10 We use the term “autism clinician” to refer to any healthcare professional who is involved in clinical care for autistic people, including assessment and healthcare services. This includes developmental pediatricians, primary care pediatricians, psychologists, nurse practitioners, nurses, social workers, speech and language pathologists, occupational therapists, and a variety of other healthcare professionals. For example, a study of developmental pediatricians and related professionals found that only 2.2% of developmental pediatricians identified as Black/African American, 9.2% identified as Asian, and 6.8% identified as Hispanic/Latine.11Serious efforts must be taken to grow and train the workforce in cultural competence and other factors that impact equity in care. Examples include targeted recruitment of aspiring autism clinicians within undergraduate and graduate programs and service systems (eg, advertising, waived application fees), particularly for applicants from minoritized racial and ethnic backgrounds; funding at the regional, state, and federal levels to offer and subsidize training efforts for clinicians that focus on cultural humility and neurodiversity-affirming practices; and targeted support for clinicians that are already in healthcare systems but do not yet have advanced training on autism or neurodevelopmental disabilities (eg, mental health clinicians, pediatricians).Funding is also a major concern in this field. The autism workforce struggles with a high staff turnover rate, which contributes to challenges with service quality and workforce development.12 Poor autism-related funding policies from insurers negatively impact workforce retention and development, as well as service quality.10 States have created insurance mandates that require insurance companies to reimburse autism-related healthcare costs for autistic people. These mandates are associated with increases in the prevalence of some autism clinician disciplines (eg, Board-Certified Behavioral Analysts, child psychiatrists) but not others (eg, pediatricians).10 Funding also negatively impacts clinician retention. For instance, applied behavior analysis technicians typically make less than $20 per hour and experience a high level of turnover, yet applied behavior analysis clinics receive an average reimbursement from insurance companies of $65 per hour for these services.12Although there has been considerable progress in diagnosing autism among minoritized individuals, limited resources have been devoted to improving services and quality of life in these populations. It is exciting that these new data show immense progress in alleviating disparities in autism diagnosis, but this also means that there is an urgent need to shift research and implementation efforts toward health equity in service delivery and quality. An important first step is addressing the following research priorities from autistic individuals and other community members8 (such as family members and professionals): skill development across the lifespan, including employment; improving physical health, well-being, and mental health; and improving service quality (ie, coordination, availability, and accessibility of services) across the lifespan. To address these priorities, we must recruit, train, and retain a diverse workforce that is reflective of the communities in which they serve. We see the areas of service quality and workforce development as inextricably intertwined. Indeed, improvements in service quality will largely be driven by workforce development strategies, such as improved preservice and in-service training and recruitment of a diverse workforce. Substantial funding and policy support is needed to move us into the health equity phase of autism research.