Fetal alcohol spectrum disorders (FASDs) are a group of disorders, including fetal alcohol syndrome, caused by prenatal alcohol exposure (PAE). These disorders are characterized by combinations of central nervous system abnormalities, neurodevelopment and behavioral impairments, facial dysmorphia, growth deficits, and/or birth defects (Hoyme et al., 2016). There is no cure for FASDs; although persons with an FASD might require lifelong support and care, early intervention services can improve developmental and life outcomes (Turchi et al., 2018). Active-case ascertainment studies that utilize in-person assessments to identify children with and without a previously diagnosed FASD have found the prevalence of FASDs ranged from 11.3 to 71.4 per 1000 first grade children in selected communities in the United States (U.S.). Notably, only 1 % of children identified with an FASD in these studies had been previously diagnosed (May et al., 2018, 2021).

Estimating and describing the population of children with an FASD diagnosis is essential for understanding the magnitude and distribution of these disorders in the population, can inform the planning and development of services, and can provide a baseline estimate for efforts to improve diagnosis of FASDs. A study using healthcare claims databases found 0.12 per 1000 commercially insured and 0.61 per 1000 Medicaid insured children had an administratively reported FASD from 2015 to 2021 (Deputy et al., 2024). Although this study leveraged existing data and was less resource intensive than in-person studies, this study might underestimate the prevalence of children with an FASD diagnosis as studies of healthcare claims databases rely on a diagnosis being included on a claim and reported into healthcare databases, which might not consistently occur due to reimbursement or other reasons (Grosse et al., 2022). A recent study using data from the National Survey of Children’s Health (NSCH), an annual, nationally-representative, cross-sectional household survey that assesses various aspects of children’s health via caregiver report, found the prevalence of children with an FASD diagnosis was 2.1 per 1000 (Zang, et al., 2025). This study found prevalence varied across a limited number of demographic groups examined; however, a more comprehensive description of the prevalence of children with an FASD diagnosis by demographic characteristics is needed to inform public health activities.

Receipt of an FASD diagnosis (or diagnosis for another condition) is often the result of a multi-step process. Understanding the prevalence of children being recommended for and receiving an FASD evaluation – two steps in a prototypical FASD diagnostic process – can provide insight about FASD-informed care and areas for improvement (Hayes et al., 2023; Kent et al., 2023). However, no studies to date have captured the prevalence of children at different stages of the diagnostic process in a nationally representative U.S. sample.

In 2022, the NSCH assessed caregiver-reported FASD experiences for the first time, including recommendation for an FASD evaluation, receipt of an FASD evaluation, and diagnosis of an FASD. Caregivers are well suited to provide information about FASD evaluation and diagnosis as they typically raise concerns to a provider, follow-up on referrals for evaluation, and communicate diagnostic findings back to their medical home provider for treatment and care coordination of services. To provide an up-to-date and comprehensive description of FASD experiences in the U.S., we used pooled data from the 2022–2024 NSCH to estimate the caregiver-reported prevalence of children who were ever recommended for an FASD evaluation, who ever received an FASD evaluation, and who ever received an FASD diagnosis, overall and among demographic subgroups. We also examined the overlap in recommendation for an FASD evaluation, receipt of an FASD evaluation, and receipt of an FASD diagnosis to understand what proportion of children had more than one of these steps in the FASD evaluation and diagnostic process.

Overall, according to caregiver report, 2.4 per 1000 children (95 % CI: 1.9–3.1; unweighted n = 339) were recommended for an FASD evaluation, 3.1 per 1000 (95 % CI: 2.5–3.9; unweighted n = 521) received an evaluation, and 2.0 per 1000 (95 % CI: 1.5–2.7; unweighted n = 329) received an FASD diagnosis, at some point during their childhood (Table 1). Caregiver-reported prevalence of the three FASD experiences varied by several characteristics; notable patterns are described below. For example, by race and ethnicity, recommendation for an evaluation and receipt of a diagnosis were higher among non-Hispanic American Indian or Alaskan Native children (28.9 per 1000 [95 % CI: 10.3–78.0]) and 30.2 per 1000 [95 % CI: 11.0–79.8], respectively) than non-Hispanic white children (1.2 per 1000 [95 % CI: 0.9–1.6) and 1.2 per 1000 [95 % CI: 0.9–1.5], respectively), though estimates for non-Hispanic American Indian or Alaskan Native children were imprecise (RSE >30 %). Specific to family structure, recommendation for an evaluation, receipt of an evaluation, and receipt of a diagnosis were higher among children cared for by a grandparent or other relation (10.6 per 1000 [95 % CI: 6.8–16.5], 9.6 per 1000 [95 % CI: 6.2–14.9], and 10.8 per 1000 [95 % CI: 7.2–16.0), respectively) than those cared for by two parents (1.3 per 1000 [95 % CI: 1.0–1.7], 2.3 per 1000 [95 % CI: 1.9–2.8], and 1.2 per 1000 [95 % CI: 0.9–1.6), respectively). Recommendation for an evaluation, receipt of an evaluation, and receipt of a diagnosis were higher among children with public insurance only (4.5 per 1000 [95 % CI: 2.9–6.9], 4.9 per 1000 [95 % CI: 3.3–7.4], and 4.1 per 1000 [95 % CI: 2.6–6.4], respectively) than those with private insurance only (0.6 per 1000 [95 % CI: 0.5–0.9), 1.6 per 1000 [95 % CI: 1.3–2.1], and 0.8 per 1000 [95 % CI: 0.5–1.2], respectively). Similarly, recommendation for an evaluation, receipt of an evaluation, and receipt of a diagnosis were higher among children who ever had a history of one or more mental, behavioral, or developmental disorders (6.8 per 1000 [95 % CI: 5.5–8.4], 7.9 per 1000 [95 % CI: 6.5–9.6], and 5.7 per 1000 [95 % CI: 4.6–7.1], respectively) than those without such a disorder (0.8 per 1000 [95 % CI: 0.3–1.9], 1.4 per 1000 [95 % CI: 0.8–2.5], and 0.7 per 1000 [95 % CI: 0.3–1.9], respectively), though some estimates for children without a history of mental, behavioral, or developmental disorders were imprecise (RSE >30 %).

Overall, 4.6 per 1000 children (95 % CI: 3.9–5.4; unweighted n = 715) had either an FASD evaluation recommended, received an FASD evaluation, or had an FASD diagnosis. Among this subgroup, 19.7 % were recommended for an evaluation but did not receive an evaluation or diagnosis, 8.5 % were recommended for an evaluation and received an evaluation, but were not diagnosed with an FASD, and 20.0 % were recommended for an evaluation, received an evaluation, and were diagnosed with an FASD. The remaining children had a different combination of FASD evaluation and diagnosis experiences; for example, 10.5 % had an FASD diagnosis, but were not recommended for or received an evaluation (Table 2). In post hoc analysis, among children who received an evaluation but were not diagnosed (regardless of recommendation; n = 346), 62.2 % also had a history of one or more mental, behavioral, or developmental disorders (data not shown).

In this nationally representative sample, the caregiver-reported prevalence of children with an FASD diagnosis was 2.0 per 1000 children; furthermore, 2.4 per 1000 children were recommended for an FASD evaluation and 3.1 per 1000 received an evaluation. Although estimates of children with an FASD diagnosis are higher than those from healthcare claims databases, they likely underestimate the entire population of children with FASDs (i.e., those with and without an FASD diagnosis). However, patterns in caregiver-reported prevalence of FASD diagnosis by demographic characteristics align with previous reports that have found higher prevalence among American Indian children (Popova et al., 2019), children with public insurance (Deputy et al., 2024), and children under the care of a grandparent or other relative (Lange et al., 2017; Popova et al., 2019). Assessing the prevalence of children with an FASD diagnosis, overall and by demographic characteristics, is essential for understanding the magnitude and distribution of these disorders in the population, gauging current service needs, identifying populations requiring additional support services, and can serve to establish a baseline to evaluate efforts focusing on increasing identification of children with FASDs.

Prevalence estimates for children with FASDs vary depending on study methodology. Specifically, this study found 2.0 per 1000 children had an FASD diagnosis based on caregiver report, which is consistent with estimates from a previous study that used 2022–2023 NSCH data (Zang et al., 2025). These caregiver-reported estimates are higher than a study of healthcare claims databases that found the administratively reported prevalence of FASDs was 0.12 per 1000 among children with commercial healthcare plans and 0.61 per 1000 among children enrolled in Medicaid during 2015–2021. Caregiver-reported prevalence of children with an FASD diagnosis might be higher than administratively reported prevalence due to the limited number of diagnosis codes that apply to FASDs and because there are no validated algorithms to identify children with FASDs in administrative databases (O’Donnell et al., 2022). Both caregiver-reported and administratively-reported prevalence of children with an FASD diagnosis are lower than those from active case ascertainment studies, which estimate the prevalence of FASDs range from 11.3 to 71.4 per 1000 school-age children (May et al., 2018, 2021). Active case ascertainment studies employ in-person assessments in selected community samples to evaluate FASD-related characteristics in children (e.g., dysmorphology, PAE) and can identify children who have and have not been previously diagnosed with an FASD, which might better approximate the true, underlying population of children with FASDs and likely explains higher estimates compared to other methods. Despite the NSCH underestimating the true population of children with an FASD, the nationally representative and ongoing nature of these data suggest it might serve as an important data source for public health surveillance activities focusing on children with an FASD diagnosis.

The sizeable difference between the prevalence of children with an FASD diagnosis from this study and the underlying prevalence of children with an FASD (i.e., those with and without a previously diagnosed FASD) from active case ascertainment studies highlight challenges with identifying and diagnosing children with FASDs. Indeed, one study found 80 % of youth with an FASD in a child welfare agency had not been previously diagnosed (Chasnoff et al., 2015). Previous studies have found that underdiagnosis of FASDs is likely related to social stigma associated with assigning a diagnosis to a family, stigma and difficulty around establishing a history of PAE, distinguishing diagnostic characteristics that have similar developmental profiles to other mental or behavioral disorders (e.g., ADHD), and limited diagnostic resources in communities (Benz et al., 2009; Popova et al., 2023; Wozniak et al., 2019). Identifying children with an FASD is important as it facilitates appropriate treatment and care and may optimize health and developmental outcomes. Strategies such as universal screening of PAE in pediatric settings may improve identification of children with FASDs, but studies suggest providers do not routinely assess PAE history for pediatric patients (Dunkley et al., 2025). Importantly, the American Academy of Pediatrics provides resources and trainings that promote universal screening of PAE, increase awareness of FASD diagnostic characteristics, and facilitate the FASD screening, assessment, and diagnosis process (American Academy of Pediatrics, 2017, 2023).

Examining the overlap of FASD-related experiences might provide insight into pathways through care for children suspected of an FASD. For example, among children who were either recommended for an evaluation, received an evaluation, or diagnosed with an FASD, 20.0 % experienced all three steps, which might reflect a prototypical diagnostic process. However, other patterns in FASD experiences were observed, including 10.5 % of children receiving an FASD diagnosis, but not reporting a recommendation for an evaluation and not reporting receipt of an evaluation. These patterns might reflect environments in which awareness of FASDs among providers is limited, referral or evaluation services are unavailable, or may reflect broader variability in diagnostic processes; these patterns might also reflect potential disconnects in the FASD evaluation and diagnostic process. Indeed, studies have identified provider-oriented challenges to FASD-informed care, such as limited training in identifying FASD signs and symptoms that contribute to delayed, incorrect, or lack of diagnosis, limited clinical capacity for multidisciplinary approaches to evaluation, and concerns about making a traditionally stigmatizing diagnosis (Abdul-Rahman et al., 2023; Brown et al., 2019; Dugas et al., 2022). Equally important are caregiver-oriented challenges that may impact pathways through care, such as lack of resources to navigate the diagnostic process, stigma, and changes in guardianship that might limit historical knowledge about a child’s health or care (Chamberlain et al., 2017; Morehouse et al., 2023). Moreover, for children with a history of ever having another mental, behavioral, or developmental disorder, the focus on FASD-specific concerns may be overshadowed by a more pressing and/or less stigmatized health concern (e.g., ADHD, autism), and, in our study, we observed a higher prevalence of FASD evaluation recommendation, evaluation receipt, and diagnosis among those with a history of another mental, behavioral, or developmental disorder. Future analyses are needed to explore pathways through care and how factors, including co-occurring disorders, might impact these processes.

This study is subject to limitations. Caregiver-reported prevalence of children with an FASD diagnosis underestimates the true population of children with FASDs due to underdiagnosis of these disorders in the general population. Small sample sizes reduced the precision of prevalence estimates among subgroups of interest. Although questions assessing recommendation for and receipt of an FASD evaluation provide insight into care pathways, they do not capture all potential steps or pathways to an FASD diagnosis, nor provide information on why an FASD diagnosis was ultimately not received. Ages at FASD evaluation and diagnosis were not captured, which limits insight into temporality of these experiences; furthermore, timing of FASD experiences relative to the survey administration might result in lengthy recall times that might influence reporting of these experiences. All FASD-related questions on the NSCH underwent cognitive testing; however, FASD evaluation was not explicitly defined on the survey, which might introduce ambiguity and contribute to misreporting or item nonresponse. Although the NSCH captures detailed information about caregivers, it does not distinguish biological and adoptive parents, and it is conceivable that caregiver underreporting may be attributed to changes in primary guardianship (e.g., for children cared for by adoptive or foster parents) that limits historical context about prior medical experiences; additionally, we were unable to distinguish grandparents from other relations due to limited sample sizes. Finally, the survey is based on caregiver report, and stigma associated with FASDs might have influenced reporting of these experiences, resulting in misclassification.

In summary, these caregiver-reported estimates represent the most recent national, population-based description of FASD evaluation and diagnosis among U.S. children. Findings from this study can complement those from active case ascertainment and healthcare claims studies by describing the population of children diagnosed with an FASD among a national sample. Furthermore, the availability of FASD-related questions on the NSCH allows for continual assessments to evaluate trends over time and detailed analyses among subgroups of interest. The sizeable difference between the prevalence of children with an FASD diagnosis described here and prevalence of children with and without an FASD diagnosis from active case ascertainment studies – in addition to the non-direct pathways through care described here – underscore the need to improve the screening, evaluation, and diagnostic process to ensure children with FASDs are evaluated and diagnosed in a timely manner to optimize outcomes.