Prioritizing Social Determinants of Health in Public Health Surveillance for Autism

SDOH, including historical and community factors related to housing, employment status, and food insecurity, as well as persistent and cumulative stressful experiences over the life course, affect an estimated 80% of health outcomes in the US general population.⁴  SDOH are particularly salient for autistic individuals and their families, who not only experience distinct socioeconomic challenges⁵  but also particularly severe chronic stressors in the forms of psychosocial challenges, such as social isolation, exclusion, and discrimination, experiences of abuse and trauma, and lifelong struggles accessing quality health care.^6–12  In nonautistic populations, SDOH lead to poor-quality health care, impede access to services and resources, and contribute to lower treatment utilization.¹³  In effect, SDOH are potential reasons for the underdiagnosis of autistic racial, ethnic, and gender minorities consistently found across the United States in every report since the ADDM began in 2000.² 

Efforts to integrate SDOH and surveillance efforts for both autistic and nonautistic populations are impeded by providers’ challenges in collecting these data in the first place. Indeed, although most providers believe universal SDOH screening is important, fewer report that screening is feasible or feel prepared to address families’ social needs when they are identified.¹⁴ 

In the event that SDOH data are collected, there is limited evidence on the psychometric and pragmatic validity of SDOH screening tools.¹⁵  In addition, cultural and historical factors likely result in different outcomes, even among individuals experiencing the same individual risk factors.¹⁵  Moreover, providers are subsequently challenged to provide appropriate community-based referrals and resources to address the information they learn from screening.¹⁵ 

Lack of provider capacity to screen and refer for SDOH is particularly detrimental for autistic individuals and their families, who are simultaneously navigating higher unmet service needs and a complex, partitioned set of services and supports.¹⁶  These shortcomings also impede the generation of new research that can support autistic individuals across the life course, thus creating a perpetual cycle in which the needs of this population are not being met.¹⁷ 

In light of these barriers along the practice and research continuum that contribute to insufficient surveillance, we propose the following recommendations:

Recent investments from the largest behavioral health insurer in the United States (the Centers for Medicare and Medicaid Services) underscore an increasing recognition of the need for real-world solutions to support individuals and families.^18,19  At the practice level, universal SDOH collection and reporting, partially through Z codes available through International Classification of Diseases, 10th Revision, Clinical Modification, can enhance the extent to which population-level surveillance efforts can disaggregate findings by meaningful indicators of socioeconomic status, chronic stressors, and quality of life. Physicians seeking to implement universal SDOH screening in their practices can look toward ongoing quality improvement initiatives that pilot test and implement SDOH screening, referral, and intervention efforts.^20–22 

Conversations surrounding universal screening lead practitioners to pose the next logical question: how are patients’ individual risk factors addressed when they are identified? This question presents novel and field-changing opportunities to link to health care, social safety net, and community resources. To start, physicians can establish referral linkages through interdisciplinary partnerships and additional capacity-building.²³  Such partnerships can advance pilot validations studies for SDOH measures, which are critical to efforts to link population-level surveillance, as reported by Shenouda et al, with SDOH.¹⁵ 

In the long-term, wide-scale adoption of SDOH screening tools at the practice level will translate to autism researchers’ ability to analyze surveillance data to account for SDOH more thoroughly. This will, in turn, inform regional and national efforts to combat health disparities for autistic populations. Autism surveillance researchers can model and build on existing efforts to assess SDOH. Disease areas such as heart disease, stroke, HIV, and chronic kidney disease have begun to incorporate SDOH indicators in their surveillance systems and national data set construction.²⁴  In the context of these efforts, it will be beneficial to prioritize intersectionality: a theoretical framework for understanding how multiple social identities intersect.²⁵  This will ensure that SDOH indicators are accurately interpreted as a confluence of interacting factors, rather than as discrete, individual contributors to health and wellbeing.¹³ 

Since the inception of the ADDM, every report has revealed differential autism prevalence by demographic characteristics, yet any interpretation of these differences remains speculative. As was reported in the article by Shenouda et al, disparities can potentially be attributed to a wide range of individual, environmental, and systemic factors.¹  Prioritizing SDOH data collection and analysis will not only elucidate the specific factors underlying disparities in autism prevalence but will more generally facilitate the development of effective public health equity initiatives.

ADDM

Autism and Developmental Disabilities Monitoring Network

SDOH

social determinants of health