Unpacking the prevalence: A warning against overstating the recently narrowed gap for Black autistic youth

Abstract

Recent findings from the Center for Disease Control and Prevention’s (CDC) Autism and Developmental Disabilities (ADDM) 2020 prevalence report indicate that disparities in autism diagnoses between Black and White youth have narrowed, reflecting improved screening, awareness, and access to services (Maenner et al., 2023). Claims of reducing disparities beyond prevalence rates, however, are not fully supported, as indicated by the reality that Black youth whose screenings indicate autistic traits are still not being referred for full evaluation or early intervention services at the same rate as their White peers (Major et al., 2020; Smith et al., 2020). Black 8-year-olds identified as autistic still experience disparate educational placements (Waitoller et al., 2010) where services may not be autism-specific or have Individual Education Plan goals only focused on “behavior problems” (Severini, Ledford, & Robertson, 2018), are served in the most restrictive environments (Skiba et al., 2006), and lack consistent augmentative and alternative communication support (Pope et al., 2022). Additionally, ADMM researchers report consistent disparities in the identification of co-occurring intellectual disability where Black autistic children have significantly more co-occurrences than White autistic children. The purpose of this commentary is to first examine the assertion that the narrowed gap indicates, “…improved…access to services among historically underserved groups,” (p. 9) (Maenner et al., 2023). We will then recommend strategies to address the ongoing disparities.

Lay Summary

According to the Centers for Disease Control and Prevention, the prevalence rate of Black 8-year-olds identified as autistic has increased to be more even with the rate of White youth. Although identifying more Black autistic youth is a positive change, Black youth are still not receiving the same quantity and quality of therapy and services as White autistic youth. This commentary serves as a reminder that we need to close the service disparity gap between Black and White autistic youth, and we provide suggestions to promote equity in access to services.

Introduction

The latest data from the Centers for Disease Control and Prevention’s (CDC) Autism and Developmental Disabilities Monitoring (ADDM) Network shows the prevalence of autism has increased to 1 in 36 for 8-year-olds (Maenner et al., 2023), with Black autistic youth (BAY) now making up ~30% of this population; suggesting that the diagnosis disparity between Black (29.3%) and White (24.3%) youth has narrowed (Maenner et al., 2023). At age 4, more Black, Hispanic/Latine, and Asian/Pacific Islander children were identified than White, and there were 3 boys diagnosed for every 1 girl; yet the 8-year-old rates are still 1 girl for every 4 boys (Maenner et al., 2023). When considering intersectionality, the prevalence of Black autistic girls is still lower, and they are diagnosed later and more often with co-occuring ID (Diemer, Gerstein, & Regester, 2022). A 70-year scoping review of Black autistic women and girls (Lovelace et al., 2022) also shows the persistent dearth of their inclusion in research, despite the rising autism prevalence rate of Black children and girls. This underscores the ongoing need to address disparities, despite the narrowed identification gap and, although these ADDM data are important, we must be mindful that there are limitations to the data.

This shrinking identification disparity does indeed provide hope for better autism identification among those who have been historically under-identified. Keep in mind, however, that the ADDM Network consists of only 11 US sites and the data are largely retrospective, based on extant clinical or educational records for a specific age (i.e., 8 year olds). Therefore, it is likely that diagnostic disparities may persist in some areas of the country and the study, perhaps, misses youth who are diagnosed later. Though Maenner and colleagues (2023) suggest the increased prevalence among Black youth, “…might reflect improved screening, awareness, and access to services among historically underserved groups” (p. 9), we consider these findings preliminary (due to the aforementioned limitations of the sample) and warn against overstating these preliminary data as having solved an under-identification problem. Rather, we will highlight the marginalizing systems that exist, despite the narrowed identification gap, and provide an action plan for a path toward improving service provision for BAY.

Persistent Disparities in Quality of Life

Black autistic youth and caregivers experience systemic inequities that marginalize them within educational and clinical contexts (Blanchett, Klingner, & Harry, 2009). Even when identified, they still face a litany of disparities in a) service type, quantity, and quality; b) service access; c) the rate of co-occurring conditions; d) quality of life outcomes post high-school and; e) effective outcomes from interventions deemed evidence-based (Constantino et al., 2020; Gallegos et al., 2021; Maenner et al., 2023; Magaña et al., 2012; Pope et al., 2022; Shattuck et al., 2011; Schott, Tao, & Shea, 2022; Turner-Brown et al., 2013; Yingling et al., 2018).

Disparities in Service Type and Quality

Black autistic youth often rely on school-based services to meet their therapeutic needs, due to easier access and affordability. BAY are 5.6% more likely than their White peers to use school-based services (Bilaver et al., 2021), and use outpatient services at least 5.2% less often than White youth (Čolić et al., 2021). It is noteworthy that Bilaver et al.’s (2021) study focused on children enrolled in Medicaid, allowing for a fair economic comparison among children. The fact that even White children from low-income households receive outpatient services more frequently than Black children illustrates how healthcare access challenges extend beyond cost and insurance status. Rather, outpatient service costs, the lower likelihood of having private insurance, as well as implicit racial biases and systemic racism experienced in healthcare impede Black families (Liu et al., 2023; Pearson et al., 2020; Smith et al., 2020). These structural and social determinants of health (Healthy People 2030, n.d.) contribute to Black youth being less likely to be referred for or to receive services outside school (Straiton & Sridhar, 2022).

Advantages of school-based services, however, include the lessened auxiliary time constraints like travel to outpatient services or caregivers needing time off of work. While school is an important provider, educators can over-identify Black youth for special education (Bekele, 2019; Mapps, 2020), especially under the label of emotional disturbance (Morgan, 2020; Garwood & Carrero, 2023). Although Black children tend to be under-identified as autistic, especially for autism that requires lower levels of support at younger ages (Dickerson & Dickerson, 2020; Fombonne & Zuckerman, 2021), over-designation occurs with children of immigrants (Becerra et al., 2014), which can be attributed to assessments that are not culturally or linguistically appropriate (Brice & Coles-White, 2022). The use of culturally inappropriate assessment thereby compounds the risk of identification errors when Black youth possess intersectionality of immigrant or multilingual status, showing they can face both over-and under-identification in schools (Gordon, 2017). For the purpose of this commentary, however, research suggests that school disproportionality for Black youth remains an under-identification issue for the autism category (Kim et al., 2021; National Research Council, 2002; Severini et al., 2018).

Once identified, disparities in placement happen where BAY are more likely to be excluded from the general education environment (Skiba et al., 2006; Waitoller et al., 2010), resulting in reduced socialization with their grade level peers or less opportunities to learn specific subjects like science (Taylor et al., 2020). Given the lack of accommodations for inclusion, many BAY (35%; with only 25% of Asian and White disabled students) leave high school without a regular diploma (Horowitz, Rawe, & Whittaker, 2017), which hinders access to post-secondary education and gainful, sustainable employment (Shandra & Hogan, 2008).

Black disabled students are also 1.5 times more likely to drop out of school than their White counterparts (United States Department of Education, 2020), and if they do stay in school, they tend to receive higher incidence of punishment. Black children make up 18% of students with disabilities, yet they constituted 22% of students subjected to seclusion, 26% of those who experienced physical restraint, and 34% of those who were restrained using mechanical devices (U.S. Department of Education Office for Civil Rights, 2020). . Disabled Black students also lose three times the number of instructional days to disciplinary actions than their disabled White peers (Jones et al., 2018). This extends to analysis of the school-to-confinement (Stanford, 2020) nexus and disabled people of color where communication differences are more often perceived as non-compliance in Black youth (Garcia & Weiss, 2015; Pope et al., 2022; Stanford 2020) which explains, in part, the phenomenon of 85% of incarcerated youth having a disability (National Council on Disability, 2016).

Another contributor to service disparity is fewer Black or culturally responsive professionals to serve increasingly diverse students (Blanchett et al., 2009; Čolić et al., 2021), which limits accessible, equitable, and high-quality care (Salsberg et al., 2021). For example, speech-language pathologists are the most qualified to screen, assess, and treat communication delays/disorders, but the workforce does not reflect US demographics, with 91% being White women and only 7% being multilingual (Kasambira Fannin et al., in press).

Delayed Private and Community-Based Service Access

Delayed services also happen outside schools, as evidenced by the extended medical diagnostic process from initial reports of developmental concerns by Black caregivers (Jang et al., 2014) to the official autism diagnosis (Constantino et al., 2020). For instance, Black youth received mental health treatment for conditions other than autism ~13 months longer than White youth before receiving an official autism diagnosis, and they had three times as many doctor visits (Mandell et al., 2002) or required ≥ six visits to other professionals (Constantino et al., 2020) without documented indication of autism during this period. Additionally, core autism trait presentation and internalizing and externalizing co-occurring characteristics were similar between Black and White 4-year-olds upon evaluation (Fombonne & Zuckerman, 2021), suggesting that supposed differences in clinical presentation may not be contributing to diagnostic and service use disparities. Black caregivers have a unique positionality that affects their experience with providers where caregivers may encounter racism and biases, stigmas, language discrimination, and lack of culturally tailored assessments (Aylward et al., 2021; Dababnah et al., 2018; Wallis, 2021; Mandell et al., 2009). These barriers to diagnosis can result in delayed resource access and, at times, misdiagnosis (Liu et al., 2023; Kuhn et al., 2021).

Disparate Co-occurring Conditions

For example, when considering geographical and linguistic intersectionality, Black, rural, and bilingual youth are more apt to receive a primary educational identification of intellectual disability (ID) than autism (Kim et al., 2021). This increased ID prevalence in Black youth cannot be explained by IQ variations of first-degree relatives, family income, or child gestational age (Fombonne & Zuckerman, 2021; Mandell et al., 2002; Morrier & Gallagher, 2012), signaling potential misdiagnosis. For prevalence of co-occurring conditions, a replicated finding among BAY indicated 44% have a co-occurring ID (Constantino et al., 2020), compared to 22% of White autistic youth. The CDC substantiates these racial disparities, indicating BAY (50%) were more often identified with ID than Hispanic/Latine autistic youth (34%), American Indian/Alaska Native autistic youth (33%), or White youth (31%) (Maenner et al., 2023).

Poorer Outcomes Post-High School

Rural Black children living in poverty exhibit a higher occurrence of mental health disorders than their urban peers, with less access to services (Murry et al., 2011), and this can be compounded by neurodevelopmental disability. Eilenberg et al.’s (2019) systematic review showed that, as Black autistic youth (BAY) (especially those from low-income homes) transition to adulthood, they have a higher likelihood of disengagement from educational, occupational, and social activities. Thus, despite earlier identification of Black children (Maenner et al., 2023), the dearth of research including Black autistic adults (Malone et al., 2022) contributes to poorer pot-secondary outcomes. The heightened co-occurrence of ID and increased magnitude of support needed (Liu et al., 2023; Constantino et al., 2020; Ruble & McGrew, 2013) for Black autistic people might be partially explained by the aforementioned delayed or inadequate services in early childhood (Antezana et al., 2017; Elder et al., 2017; Mandell et al., 2007). Moreover, Schott and colleagues (2002) illustrated the ensuing support needed when they found disparities in co-occurring physical and mental health conditions using extant Medicaid administrative data; with Black autistic adults at increased odds of having schizophrenia, diabetes, hypertension, and/or cardiovascular disease. In Maslow’s hierarchy of needs, self-actualization (i.e., complete realization of personal potential) is the pinnacle of psychological development, attained only when fundamental bodily and egoic requirements have been satisfied (Maslow, 1943). We posit that self-actualization in Black autistic adulthood will be more difficult to achieve when basic bodily and egoic challenges or co-occurring conditions are unaddressed or mitigated late in life.

Varied Outcomes from Evidence-Based Interventions

Though more researchers have made efforts to diversify their samples since the 1990s (United States Congress, 1993), with significant increases in women participants (Crosland et al., 2012; Pierce et al., 2018; United States Department of Health and Human Services, 2020), Black people are still underrepresented (Imhoff, 2020; Malone et al., 2022; Shaia, 2020) or underreported in publications (Girolamo et al., 2023; Kasambira Fannin, 2017; Steinbrenner et al., 2022). An examination of determinants of Black participation in autism studies revealed that, while they want to contribute to research, distrust of researchers, limited time, and stigma (Dababnah et al., 2018) constitute a few of the barriers to recruitment (Shaia et al., 2020). Apart from recruitment challenges, attrition of Black participants can diminish statistical power, hindering the ability to draw definitive conclusions about group differences and treatment effects (Kazdin, 1990). The limited representation of Black participants in intervention studies (Kasmbira Fannin, 2017; Malone et al., 2022; Steinbrenner et al., 2022) may result in proliferation of service delivery methods that are applied to all autistic people, despite lack of culturally representative test samples (Mire et al., 2023), and regardless of questionable treatment effects (Crosland et al., 2012; Kazdin, 1990; Pierce et al., 2018; Nielsen, 2017). Because using either ineffective or un-validated interventions for diverse populations can result in significant financial burdens and risks for schools and service providers (Scheibel, Zane, & Zimmerman, 2022; Vanegas et al., 2022), wee thereby emphasize the need for heterogeneous samples to develop more broadly applicable evidence-based interventions (Zamora et al., 2016).

Developing an Action Plan

Given the increased autism prevalence among Black youth, we must think critically about ways to better serve them with consideration for intersectionality of sociocultural identities (Stansberry Brusnaman et al., 2023). The following section offers six ways to do so including: culturally responsive pedagogy, Black caregiver advocacy, diversifying the workforce, increasing funding for under-resourced communities, improving diagnostic practices, and quelling structural racism effects.

Engage in Culturally Responsive Pedagogy

Pediatric disparities rooted in racism have been well documented (Unaka et al., 2022; Trent et al., 2019). Since fewer than 15% of physicians are Black, Hispanic/Latine, and American Indian/Alaskan Native, all physicians must be trained to eliminate race-based medicine and medical racism (Wright, et al., 2022) in their pre-professional programs and clinical rotations. To instill cultural responsivity in medical education, institutions must: a) understand the political, social, and economic forces that drive social, structural, health, and health care inequities; b) integrate interventions on social determinants into all provider functions; and c) address personal histories, identities, and racial biases to rectify power imbalances in patient-provider relationships (Castillo et al., 2020). Incorporating these features of structural competency, structural action, and social responsibility into medical education will improve health care systems’ ability to deliver equitable care (Castillo et al., 2020).

Educators, regardless of sociocultural identities, can foster inclusivity for BAY by using culturally responsive texts, and promoting the use of cultural “windows” and “doors” (Bishop, 1997) that help Black students see themselves in their environment. Having diverse representation in signage, materials, policies, staff, and administration also helps foster a sense of belonging and rapport with students/clients (Stansberry Brusnaman et al., 2023). To facilitate understanding of BAY, professionals can also seek cultural informants (Spradley & McCurdy, 1972), including family members, who are knowledgeable of one’s culture and able to articulate norms, traditions, and beliefs to providers. In order to uncover some of the forgotten or silenced aspects of Black culture and history, practitioners can learn from research that centers Black caregivers’ counter-storytelling (Solórzano & Yosso, 2002) which highlights diverse voices that have been historically marginalized (Drame et al, 2020; Pearson & Meadan, 2018). Storytelling and counter-storytelling affirm the importance of BAY’s voices, ensuring they are not only heard, but also validated.

Black Caregiver Advocacy

Additionally, greater recognition of the role of cultural capital and social networks in accessing services for Black youth is important. Boshoff et al., (2018) found that caregiver advocacy was a driving force in accessing services, but there are clear disparities in who has the cultural capital to effectively advocate and navigate complex healthcare and social service systems (Blanchett et al., 2009). White caregivers have traditionally reported easier experiences navigating the healthcare system and accessing mental health and or autism-related services (Bilaver et al., 2021; Liu et al., 2023), while Morgan and Stahmer (2020) highlighted that Black caregivers often have less cultural capital and rely heavily on resistance and navigational forms of cultural capital to access services. For some Black caregivers, the term ‘advocacy’ might include components different from the traditional definition, where coping mechanisms and community supports comprise advocacy. Lewis et al. (2022) showed a variety of coping mechanisms used by Black parents to tackle stressors specific to families experiencing the interaction among different social determinants of health. Black parents wanted increased social support from service providers and inclusive environments to connect with other caregivers who could empathize with their experience. When considering protective factors in the realm of advocacy, kinship support, involvement in church communities, and communal socialization were cited as pivotal for Black caregivers (Lewis et al., 2022). Consequently, we as providers and researchers must recognize the influence of culture on the style, use, and efficacy of coping strategies, rather than simply telling families to advocate in the traditional sense. Continued examination of effective advocacy and help-seeking (Murry et al., 2011) specific to Black families, while leveraging emic community support systems will be imperative to improving equity in educational and healthcare systems.

Diversify the Workforce

One benefit of a diverse workforce is delivery of more culturally responsive care (Ding et al., 2023; Yong-Hing & Khosa, 2023), and research underscores the advantages of patient-provider dyads that share a similar cultural background (Salsberg et al., 2021). First, racial/ethnic concordance portends decreased mortality (Alsan et al., 2021; Hill, Jones, & Woodsworth, 2023) and heightened patient satisfaction (Howard et al., 2001), and when there is concordance between educators and students, we find more Black students in gifted programs (Grissom, Rodriguez, & Kern, 2017) and reduction in chronic absenteeism (Holt & Gersheshon, 2015). Thus, diversifying the workforce compels programs to use holistic admission strategies that dismantle gatekeeping into the professions and foster diversity in cohorts. When reassessing admissions processes traditionally steeped in structural racism and implicit bias, programs can incorporate diversity of life experience as a core index in the admissions rubric (Capers, 2020; Mandulak, 2022).

To advance knowledge, acceptance, and use of autism services, it is critical to consider barriers to research participation of Black families, with one such barrier being distrust of researchers (Windham et al., 2014). To mitigate this distrust, diversification of the research workforce must be a priority. First, funding is seldom directed towards diverse research teams or the topics and methods (e.g., community-partnered participatory research, qualitative) that interest racially diverse researchers (Hoppe et al., 2019; Jindal et al., 2020). Yet, researchers from underrepresented communities are intrinsically motivated to conduct the more time-consuming, community-engaged, and mixed-methods studies that provide richer insights into the human condition than quantitative analysis alone. Diverse research teams also prioritize enhanced dissemination of findings and emphasize solutions to improve overall community health (Dickerson, 2023). Through community collaboration, researchers can implement solutions-based studies to achieve health equity by underscoring social inequities (e.g., medical racism, employment and housing discrimination) and barriers to resource access that contribute to the compounded disability and disease Black people experience (Dickerson, 2023). Furthermore, research validity can be improved through diversity advisory boards involving community members, scholars, policymakers, and experts to ensure ethical and appropriate representation of Black participants (Williams, Smith, & Boyd, 2023).

Increase Funding for Under Resourced Schools and Communities

Previous ADDM data analyses showed that children who had both clinically-and school-identified autism were more likely from neighborhoods with higher SES (Dickerson et al., 2017). Notably, autistic children from lower income households are more often only identified through schools which depend on local, state, and federal funding. However, only 14% of the promised 40% federal funding from the Individuals with Disabilities Education Act (IDEA) has been allocated, despite a 25% increase in the number of students served under IDEA in the last 20 years (National Center for Learning Disabilities, 2022). More funding has the potential to reduce caseloads in overcrowded schools, enabling personnel for more comprehensive evaluations that employ unbiased measures rather than sole dependence on efficient but less accurate standardized tools. It is imperative to address the need for specific funding for multilingual providers, in recognition of the rapidly evolving US linguistic distribution (Dickerson & Dickerson, 2020), and additional workload associated with bilingual evaluation and intervention. Increased compensation could serve as a recruitment incentive for multilingual and Black individuals, who, despite their interest in allied health professions, are often underrepresented (Kritikos, 2003), as well as recruitment of healthcare providers and educators to work in under-resourced, rural areas (Lee & Nichols, 2014; Morrier & Gallagher, 2012). Thus, governmental funding for service provision improvements must be invested to realize equity in the Black autistic child’s experience.

Improve Diagnostic Practices

Increasing the number of culturally congruent or responsive clinicians who acknowledge the link between disability, race/ethnicity, SES, and racially biased assessment methods may diminish the disproportionate representation of Black children among those with inaccurate identification and placement (Brice & Coles-White, 2022; Dababnah et al., 2018; Donohue et al., 2019). Moreover, it is imperative for providers to stay abreast of assessment innovations. For instance, Furnier et al. (2024) recently demonstrated that the elevated likelihood of Black autistic children meeting ID criteria compared to White autistic children, solely based on developmental scale criteria, was significantly decreased (though not entirely eradicated) after integrating adaptive behavior criteria and accounting for certain SES variables. This illustration accentuates the necessity for evaluators to avoid rigid adherence to traditional practices and instead consider evidence-based, tailored assessment methodologies. Though understanding how to use alternatives to racially biased assessments is important, it is crucial to emphasize that alternative measures alone are inadequate, as accurate interpretation of assessments necessitates the involvement of clinicians who bring diverse lived experiences and perspectives (Donini-Lenhoff & Hedrick, 2000; Hood, Hopson, & Kirkheart, 2015).

Most Black youth are assessed by providers with different sociocultural identities and, upon receiving screening results, Black caregivers make treatment decisions that may be influenced by the quality of the provider-caregiver interaction (Dababnah et al., 2018; Mansell & Morris, 2004; Mulé et al., 2021; Rossi et al., 2013; Sheldrick et al., 2019). Clinical decision supports can guide providers in communicating screening results and making equitable decisions about evaluation referrals (Azad et al., 2022; Rossi et al. 2013), which could increase connection of Black children to services. Objective screeners, free from language bias and unaffected by alignment with White, Western standards can enhance identification accuracy. For example, digital autism screeners that allow direct observation of autistic traits may be less impacted by demographic characteristics and can serve as a supplement to the standard screeners that elicit parent reports of child behaviors. In fact, Perochon et al., (2023) showed the algorithm for their digital screener had similar sensitivity across subgroups as defined by race, ethnicity, and sex. However, ongoing investigation into the appropriateness, acceptability, and feasibility of digital healthcare tool use with Black families and their providers is needed (Dahiya et al., 2021).

Address Structural Racism in Autism

Structural racism and implicit bias affect research team composition, research mentorship opportunities, research priorities of funding agencies, who is admitted into professional programs, and who is included in studies. Exclusion criteria for autism studies have limited participation of autistic Black people (Hilton et al., 2010) who would tend to be classified as needing higher supports, such as co-occurring ID (Maenner et al., 2023) or being non-speaking; or misidentification of conduct or adjustment disorder instead of autism (Mandell et al., 2007). Families where English is not their primary language have also been excluded (Kasambira Fannin, 2017; Vanegas et al., 2022), which blocks immigrant or Latine/Caribbean U.S. citizen participants who are Black. Inaccessible research materials are also a deterrent for Black families (Shaia et al., 2020). Calls to address racism in autism services aim to reduce disparities for minoritized families (Broder-Fingert et al., 2020; Malone et al., 2022), and understanding social determinants of health is essential to unraveling factors driving disparities in autism outcomes.

While recent CDC findings show progress in identifying autism among Black youth, they continue to face troubling differences in their experiences with the autism service system in schools and healthcare. The prevalence change actually highlights the need to understand Black families and emphasizes recognizing and leveraging their cultural capital and assets when engaging in shared clinical decision-making. Enhancing screening for BAY must be coupled with actions to improve access to high-quality services and fostering of self-actualization to improve adult quality of life. In conclusion, it is imperative to intensify our focus and efforts on addressing the myriad challenges faced by Black autistic individuals across the lifespan, encompassing educational, transitional, and healthcare domains, to ensure equitable access to opportunities and services essential for their holistic well-being and success.