Addressing racial inequities: a systematic review of intervention programs for Black/African American children with autism spectrum disorder and attention-deficit hyperactivity disorder (2019–2024)

Introduction

Background

Attention-deficit/hyperactivity disorder (ADHD) and autism spectrum disorder (ASD) are two neurodevelopmental disorders with long-term clinical, social, and economic consequences for affected children and their families (1-3). Despite frequent co-occurrence, these disorders exhibit overlapping symptoms (4-8), allowing this review to examine racial disparities in diagnosis and treatment in both disorders.

The prevalence of ADHD and ASD has risen, with ASD affecting 1 in 36 children in 2020, up from 1 in 54 in 2016 (9-11). Historically, White children had the highest ASD prevalence. Still, since 2010, Black, Hispanic, and Asian/Pacific Islander children have surpassed them in diagnoses, though disparities remain, particularly for Hispanic children and those with co-occurring conditions (9,10,12). Similarly, Black, Hispanic, and Asian children do not receive ADHD diagnoses at comparable rates to White children despite similar symptom severity (13-16). Black/African American children are also more likely to be misdiagnosed with ADHD before later receiving an ASD diagnosis (17,18), with misdiagnosed Black children nearly three times more likely to receive a late ASD diagnosis (19,20), underscoring the need for improved diagnostic assessments.

Minority children face significant barriers to timely and high-quality ADHD and ASD care. They are less likely to have a consistent healthcare provider (21-23) and have lower ADHD treatment retention rates than White children, with the latter receiving more ASD-related services (21,24,25). Black children with ADHD are 58% less likely to use out-of-school, behavioral health services but 62% more likely to receive in-school services, often due to teacher referrals for externalizing behaviors (26-28). Cultural factors further delay ASD diagnosis and treatment in Black/African American families (29). While no racial differences exist in ADHD medication response (30-32), Black/African American and Hispanic children are prescribed these medications at lower rates (21,33-38). Minority families report receiving less information and experiencing less family-centered care (22,39,40). Geographic disparities also limit access to autism resources for Black, Hispanic, and American Indian/Alaska Native children, particularly in metropolitan areas (41).

Black and Latinx families seeking ASD and ADHD diagnoses and interventions frequently encounter discrimination and racial microaggressions, with structural challenges such as provider biases and ineffective communication hindering the diagnostic process (42-44). Additionally, racial bias in teacher evaluations contributes to disparities in ADHD diagnosis, with Black children rated as having more severe symptoms (45). Socioeconomic factors, healthcare system navigation challenges, limited access to information, and autism-related stigma further compound these inequities (46,47). Furthermore, minority status, parental education, insurance coverage, and English proficiency influence diagnosis and treatment gaps (13,48).

To address these disparities, researchers emphasize the need for culturally responsive interventions and expanded access to care (49,50). Culturally adapted interventions, such as the Ecological Validity Model (EVM) have shown promise (51,52), and programs like family navigation services improve diagnostic rates in Hispanic populations (53). Population-based screening and culturally sensitive healthcare practices may help reduce racial disparities in early intervention (54). However, more research is needed, particularly on Black autistic individuals, who remain underrepresented in studies (52,55).

Rationale and knowledge gap

Disparities in ADHD and ASD diagnosis and treatment contribute to long-term negative outcomes, reinforcing health and social inequities (15,56). This systematic review evaluates interventions designed to mitigate these inequities, highlighting evidence-based strategies promoting equitable access to diagnosis, treatment, and support services. By examining gaps in care, this review provides evidence-based recommendations to improve clinical practice and policy, ensuring early and equitable access to neurodevelopmental disorder treatment.

Objective

This review aims to identify and evaluate evidence-based intervention strategies that address racial and ethnic disparities in the diagnosis and treatment of ADHD and ASD in underserved populations. The following research questions guide the review: (I) What are the existing disparities in ADHD and ASD diagnosis and treatment among underserved populations? (II) What interventions have been developed to address these disparities, and how are they implemented? (III) How do these interventions align with the unique cultural and systemic needs of these populations? This review aims to identify evidence-based approaches to mitigate barriers and inform equitable care practices. We present this article in accordance with the PRISMA reporting checklist (available at https://pm.amegroups.com/article/view/10.21037/pm-24-75/rc).

Methods

We conducted a systematic search of publications from the United States or other countries with significant racial or ethnic disparities in health service utilization for children with ADHD or ASD, highlighting evidence-based findings that had a primary focus on the implementation of intervention programs for children with ADHD or ASD.

Search strategy

This systematic review was constructed using the National Library of Medicine database (NLM), with a plethora of credible sources relevant to the topic being explored. The search was conducted using the following search terms: Attention Deficit Hyperactivity Disorder, ADHD, Autism Spectrum Disorder, ASD, Black/African American, Non-Hispanic Black, intervention, health disparities, healthcare access, treatment access, and evidence-based practices, combined with Boolean search operators “AND” and “OR”. These search terms were used to identify specific manuscripts that focused on the topic being studied, with the literature searches conducted first in June 2024 and then in September 2024. We searched six databases, PubMed, Scopus, Ovid, Web of Science, EBSCO, and Google Scholar, for publications dated between January 2019 and October 2024 to examine the most current clinical perspectives on inequities in intervention programs for Black/African American children with ADHD or ASD and the contributing factors to these disparities. See Tables 1-3 for the detailed search strategy.

Eligibility criteria

Inclusion criteria

The inclusion criteria for articles were as follows: peer-reviewed publications from January 2019–October 2024 with full-text access, focusing on Black/African American children diagnosed with ADHD or ASD, and published between 2019 and 2024. Articles were selected if they examined disparities in diagnosis, access, quality, or outcomes of intervention programs. Additionally, eligible articles either reported on the implementation of ADHD or ASD intervention programs or reviewed strategies aimed at reducing racial or ethnic disparities within these interventions. Studies targeting parents or caregivers of children with ADHD or ASD were also included.

Exclusion criteria

Publications were excluded if they were systemic reviews, meta-analysis, published outside the review period (2019–2024), did not focus on ADHD or ASD intervention programs, were not peer-reviewed, did not directly address the disparity in healthcare access for children from underserved or racial minority groups, and the target population was not children with ADHD or ASD. Publications that did not have direct relevance to the research questions or review objectives were also excluded.

Data analysis and extraction

Relevant characteristics data were systematically extracted from the reviewed publications using a standardized tool that included intervention location, intervention type, intervention outcomes, main findings related to disparities, and the strengths and weaknesses of each study, which are presented in Table 4. A comprehensive overview of the implementation of interventions in the selected studies was also provided. Additionally, a narrative synthesis was conducted to identify common themes related to racial equity. Thematic analysis was systematically conducted using three large language models, two custom ChatGPT models [Thematic Analysis by Dr. Kriukow (64) and ‘Qualitative Research Data Analysis’ (65)] and Anthropic’s Claude (66). Recent studies have reported the efficacy of large language models (LLM)-driven thematic analysis (67-70). For this review, both LLMs were prompted to “analyze the themes in the attached studies based on racial equity in intervention programs for Black/African American children with either ADHD or ASD”. The themes identified by the LLMs were subsequently reviewed by the authors and independently verified against the original publications to ensure accuracy, consistency, and relevance. Only the themes that remained consistent across all analytical methods were retained and reported in this review. The authors independently revisited the selected publications to ensure that each manuscript met the inclusion criteria and to ensure the publications were available in full text to review the findings.

Risk of bias assessment

We assessed the risk of bias with a particular focus on potential publication bias and methodological limitations. Publication bias was evaluated by examining the distribution of studies across neurodevelopmental conditions, target populations, and geographic locations to identify overrepresentation or underrepresentation in certain areas. Methodological limitations were critically appraised by analyzing sample sizes, study designs (e.g., retrospective vs. prospective), and the use of control groups, as well as assessing the generalizability of findings. Two reviewers independently assessed the risk of bias, with discrepancies resolved through discussion with a third reviewer.

Results

Study identification and selection

As detailed in Table 2, six databases were searched, from which a total of 400 publications were screened based on titles, abstracts, and full text. Thirty-nine duplicates and 52 conference abstracts or posters were removed, leaving 309 articles for further screening. After the title and abstract review, 279 articles were excluded for reasons detailed in Figure 1. Twenty more articles were removed following a full-text review. The remaining ten full-text publications were screened further, leading to the exclusion of three: one due to the unavailable full text, and two for not addressing disparities among underserved or racial minority children. Seven papers that met all inclusion criteria were selected for data extraction. Figure 1 illustrates the literature retrieval process.

Figure 1 Literature retrieval flow diagram. *, The articles were either conference abstracts or conference posters. ADHD, attention-deficit/hyperactivity disorder; ASD, autism spectrum disorder.

Study characteristics

Of the seven publications included in this review, two used mixed-method data collection methods (60,63). For their qualitative data collection, Kaiser et al. (60) used one-on-one interviews, while Scarpa et al. (63) used focus-group discussions. Of the remaining five publications, there was one randomized control trial (57), a single-arm pilot trial (62), a survey questionnaire (61), a document review (58), and one with an unspecified data collection method (59), although a document review was suggested. Data from five out of the seven publications were collected prospectively (57,59,60,62,63) and two retrospectively (58,62). All seven studies focused on children diagnosed with ASD, their caregivers, or professionals providing health and social services to them (58,60-63). While this review initially aimed to identify interventions targeting children with either ASD or ADHD, none of the seven studies addressed children with ADHD, highlighting a gap in the literature regarding interventions for this group.

The main findings indicate that targeted, culturally sensitive, and system-level approaches effectively address disparities in autism care. Strengths include nationwide reach, comprehensive stakeholder collaboration, and culturally tailored interventions (57-61,63). However, limitations such as regional focus, convenience sampling, small sample sizes, and reliance on localized pilot studies may affect the scalability and generalizability of the findings (57,59-63). Additionally, persistent mistrust in healthcare systems and challenges in integrating these interventions more broadly were noted (57,59-61,63). Table 4 provides a comprehensive overview of the intervention locations and types, as well as further insights into the main findings, intervention outcomes, strengths, and weaknesses of each study.

Intervention characteristics and implementation

One of the five studies was implemented at a macro level as a nationwide research program and policy initiative, involving 59 grantees (58) in 20 states plus the District of Columbia (58). This intervention was enabled by the Autism Collaboration Accountability Research Education and Support (CARES) Act, which was reauthorized by the US Congress in 2019. With funds provided under the Act (71), the Federal Maternal and Child Health Bureau (MCHB) at the Health Resources and Service Administration (HRSA) implemented an autism research and intervention program aimed at improving early screening, diagnosis, and care (58). Of the remaining six interventions, three were meso-level organizational programs (59,61-63). Habayeb et al. (59) aimed to reduce barriers to access to care through community-level support to increase provider capacity to serve the needs of children with autism and their caregivers. This multi-system approach, implemented at Children’s National Hospital in Washington, DC, encompassed infrastructural development and the provision of direct services aimed at reducing the prolonged wait times for autism evaluations. Scarpa et al. (63) sought to improve the coordination and navigation of ASD services. It used focus groups with caregivers and service providers to identify challenges and develop recommendations for improving access to autism services in rural Appalachian communities. Nasir et al. (61) implemented an integrated model of autism diagnostic evaluation aimed at expediting diagnosis and improving access to care within primary care settings, with pediatricians serving as the main diagnosticians. This program included training physicians to administer multiple screening tools to identify patients with potential ASD concerns and establishing a three-visit diagnostic process, which comprised a diagnostic interview, behavioral observation, and feedback. The program by Kaiser et al. (60) was implemented at the micro level, focusing on individual-level strategies to support children with autism directly. The practice-based research introduced a culturally concordant Parent Training program, Spectrum of Care (SoC). The training program, developed by the Color of Autism Foundation (COA), a non-profit organization dedicated to educating and assisting Black/African American families, aimed to empower parents of children with autism by enhancing their confidence and ability to become more effective advocates. Dababnah et al. (57) and Nuske et al. (62) were a mix of meso- and micro-level interventions. At the meso-level, the Parents Taking Action (PTA) intervention integrated with healthcare systems and social work support by connecting the participating families to community resources like early intervention, food assistance, and specialty services (57) while operating at the micro-level through individualized peer-delivered support focused on parent education, advocacy skills, and mentoring relationships between experienced Black/African American parents of autistic children and parents awaiting diagnosis. Building Better Bridges (BBB) functioned at the micro-level through its provision of individualized parent coaching and family support and at the meso-level through systematic coordination between school systems, community organizations, and academic institutions (62).

Across the seven publications, participants included researchers (59), service providers (57-59,61,62), community leaders (62,59), and caregivers (57,60-63). The interventions primarily targeted families and children with ASD or those with concerns regarding ASD. There was a particular emphasis placed on individuals from racial minority groups (57,59,60,62), underserved communities (58-61), rural areas (62,63), and low-income populations (57,61-63). The intervention outcomes across the included publications demonstrated improvements in access to autism services, particularly for underserved populations (58,59,63). For example, the MCHB program established practice guidelines and specialized tools, improving diagnostic and treatment processes nationwide (58). The program in Washington, D.C. reduced wait times for evaluations and increased service collaboration (59), while the culturally grounded parent training program significantly boosted parental empowerment in Black/African American communities (60). Nasir et al. (61) initiative in Omaha reduced the median age of autism diagnosis, while Scarpa et al. (63) expanded access to care in rural Appalachian regions using a telehealth-based intervention.

Risk of bias within and across studies

As shown in Table 4, methodological limitations were common within individual studies, including small sample sizes, high dropout rates, a lack of control groups, and reliance on retrospective designs, highlighting the difficulty in enrollment of participants and challenges of attrition seen in prospective studies (57,59,61,63). The reliance on self-reported measures by participants and facilitators introduced potential bias, particularly when interventions focused on parental empowerment or service engagement (57,60,62). Additionally, systemic issues such as mistrust in healthcare systems were persistent challenges, even when culturally tailored approaches were employed (57,60,63). These limitations underscore the importance of future studies employing rigorous, standardized designs with larger, more diverse samples to enhance the validity and applicability of findings across varied contexts (58,59,61).

Across all seven studies, the potential for publication bias was evident in the overrepresentation of ASD-focused studies and the complete absence of ADHD-specific interventions, creating an imbalance in the evidence base (57,59,60-63). Many studies focused on specific populations, such as urban or rural underserved communities, limiting the generalizability of findings to broader demographics (59,63,61). Additionally, studies often relied on self-reported outcomes, which are susceptible to selective reporting and may overemphasize positive intervention effects (57,60). Geographic and cultural gaps were also evident, as many interventions were localized to specific settings, further emphasizing the need for more diverse and representative study populations (58-60,63).

Thematic analysis of racial equity

Systemic and structural inequities

All seven studies emphasize the importance of reducing inequities in autism care by identifying significant gaps in diagnosis, service delivery, and outcomes for marginalized populations. Common disparities include later ages of diagnosis (57,58,61) and increased difficulties in navigating healthcare systems (57-59,63). These barriers disproportionately affect Black/African American families by extending wait times and limiting referrals for autism evaluations (57-60). In urban settings such as Washington, DC, Black/African American and Hispanic children were noted to experience lengthier wait times for diagnosis, fewer referrals for autism evaluations, and fragmented services (59-61). Additionally, Nasir et al. (61) and Scarpa et al. (63) identified specific barriers in underserved and rural populations, such as a shortage of specialists and geographic isolation. Several studies advocated multisystem interventions, including embedding care coordinators, providing navigators, and integrating autism evaluation into primary care settings (58,59,61). DiBari et al. (58) further highlighted the need for targeted approaches to close screening and intervention gaps in underserved and rural areas, demonstrating how federally funded autism research programs have attempted to mitigate these issues nationally, though racial disparities persist.

Collectively, the studies reveal those structural inequities in healthcare systems—rooted in systemic racism, economic inequality, and healthcare fragmentation—significantly hinder access to autism care for racial minorities, low-income families, and rural communities (59,60). Despite efforts to expand autism research programs, persistent delays in diagnosis, especially among Black/African American children, underscore the need for coordinated, systemic interventions to enhance early intervention opportunities and improve overall service accessibility (58,59,61).

Cultural relevance

Culturally responsive approaches in autism care are a central theme across several studies (57,60-63). Kaiser et al. (60) developed culturally grounded interventions tailored to specific communities, while Scarpa et al. (63) and Nasir et al. (61) emphasized the influence of cultural factors in service engagement and the importance of addressing cultural barriers in diagnosis and treatment. Dababnah et al. (57) utilized the SHARP (Structural oppression, Historical context, Analysis of role, Reciprocity and mutuality, and Power) Framework (72) to create a culturally responsive, peer-led intervention that addresses systemic racism, empowers Black/African American families through advocacy and mutual learning, and provides tailored support to navigate structural barriers in developmental and autism care.

These studies highlighted the necessity of culturally appropriate screening, diagnostic, and intervention processes to ensure early intervention is effective for diverse populations. Culturally relevant programs would not only increase participation and trust among marginalized communities but also enhance the effectiveness of autism care interventions (60-63).

Kaiser et al. (60) implemented the culturally concordant SoC parent training program, designed by Black/African American parents for Black/African American families to foster engagement and healing from racial trauma. The authors further posited that traditional evidence-based programs may not adequately serve all communities. Scarpa et al. (63) identified that cultural attitudes toward self-reliance and geographical isolation impact service access among rural Appalachian families. Nasir et al. (61) focused on integrating primary care settings to improve diagnostic access for underserved populations. Collectively, these studies underscored the importance of provider-patient cultural concordance (59,60) and advocated for cultural competence training for all healthcare providers (63).

Trust building and community engagement

Five studies underscore the significant role of mistrust and lack of community engagement by healthcare providers and institutions as barriers to effective autism care for Black/African American families (59,60,62,65,68). Kaiser et al. (60) and Habayeb et al. (59) demonstrate that historical and systemic mistrust hinders engagement with traditional autism services. To combat this, these studies highlight the effectiveness of community engagement strategies. The SoC program, implemented by Kaiser et al. (60), utilized Black/African American parents as facilitators to create a supportive and culturally concordant environment that fostered trust and increased parental engagement. Similarly, Habayeb et al. (59) employed community partnerships and embedded care models in Washington, DC, to address local needs and build trust within marginalized communities. Nuske et al. (62) incorporated the Community Partnered Participatory Research (CPPR) framework (73) to ensure equity in intervention design and delivery by actively involving diverse community stakeholders, including caregivers, educators, and service providers, as a means to foster shared decision-making, cultural relevance, and inclusivity to address systemic inequities in school transitions for autistic students.

In both urban and rural settings, as illustrated by Scarpa et al. (63) and Nasir et al. (61), community-based interventions are essential for overcoming barriers related to mistrust and facilitating access to early intervention services. Scarpa et al. (57) identified that cultural attitudes and geographic isolation in rural Appalachia impede service utilization. Habayeb et al. (59) and Nasir et al. (61) emphasized the importance of integrating diagnostic services within primary care settings to leverage existing family-provider relationships and enhance continuity of care. By embedding care coordinators, utilizing peer-led programs, and fostering community partnerships, these approaches would build trust, enhance service utilization, and ultimately achieve more equitable outcomes in autism care (59-61,63).

Discussion

This review examining interventions to reduce disparities in autism care among marginalized populations found that targeted, culturally sensitive, and system-level approaches are needed to improve access to services for minority groups. Findings from these studies demonstrated the importance of enhancing equity and accessibility in autism services through cultural sensitivity, and multidisciplinary collaboration. The interventions included a nationwide program funded by the Autism CARES Act, which implemented 59 projects to enhance early screening, diagnosis, and care across the United States (58). Other initiatives were organizational programs that increased provider capacity and reduced wait times in both urban and rural settings—such as the multi-system approach at Children’s National Hospital in Washington, DC, which reduced prolonged wait times for autism evaluations (59), and the integrated model of autism diagnostic evaluation within primary care settings that expedited diagnosis and improved access to care (61). Additionally, a culturally concordant parent training program called SoC empowered Black/African American families by enhancing their confidence and advocacy skills (60). Dababnah et al. (57) used the PTA intervention, guided by the SHARP Framework, to address systemic racism and enhance autism service accessibility for Black/African American families through culturally sensitive, peer-led support. Nuske et al. (62) employed the BBB intervention, informed by the CPPR framework, to improve school transitions for autistic students in under-resourced communities through collaborative, culturally relevant coaching. These studies demonstrated significant improvements, including improved diagnostic processes, reduced wait times, increased parental empowerment, and expanded access to care in underserved areas. By involving researchers, service providers, community leaders, and caregivers, and focusing on families and children with ASD—particularly among racial minorities, underserved communities, rural areas, and low-income populations—these interventions addressed disparities in autism care through comprehensive stakeholder collaboration and culturally tailored strategies.

The reviewed studies collectively highlight significant systemic inequities in ASD services affecting marginalized populations, particularly Black/African American families and other minorities. One prominent finding is the delayed diagnosis and access barriers experienced by these groups. Later ages of ASD diagnosis are prevalent among marginalized populations, as indicated by Dababnah et al. (57), DiBari et al. (58), and Nasir et al. (61). Black/African American families face extended wait times for evaluations and receive limited referrals for autism assessments, exacerbating disparities in accessing timely care (57-61). These delays hinder early intervention opportunities that are critical for optimal developmental outcomes. As noted in the studies, marginalized populations experience structural barriers like increased difficulties in maneuvering through fragmented healthcare systems, impeding access to necessary services (57-59,62,63). Such challenges are more pronounced for low-income families and those residing in rural areas. Black/African Americans and Hispanic/Latino children encounter longer wait times for diagnosis, receive fewer referrals for autism evaluations, and face fragmented services (57,59-62). Underserved and rural populations also face unique barriers, including a shortage of specialists and geographic isolation, which limit access to ASD services (61,63).

Similarly, other studies have illuminated significant systemic inequities in ASD services, particularly affecting minority populations in the United States. Black/African American children, among other minority groups, face multifaceted barriers to accessing timely and effective ASD care. Systemic healthcare issues such as racial bias, cultural misunderstandings, socioeconomic challenges, lack of available professionals, disparities in prenatal care, and inflexible services persist (29,74-83). Economic and geographic disparities further exacerbate these challenges, whereby non-Hispanic Black/African American children are significantly more likely to begin treatment at older ages compared to their White counterparts (84-86). Service flexibility influences their ability to obtain support services (82,83). Access to acute care, educational support, and community resources is disproportionately limited for these populations, and they report lower quality of care compared to White and higher-income families (77). The lack of non-English-language providers or interpreters and poor reimbursement policies contribute to these inequities (76). Black/African American children face an average three-year delay between initial parental concerns and ASD diagnosis, with nearly half of Black/African American parents consulting multiple providers before receiving a diagnosis (81). Additionally, minority community members report reduced access due to more negative experiences with healthcare providers, which exacerbates healthcare disparities (47). Parental visits to multiple care providers—driven by providers’ cultural bias and low index of suspicion—contributed to delays in diagnosis that may explain the higher sensitivity seen among Black/African American children. Thus, this may account for the well-established evidence that although white children were screened for ASD more than any other racial group, it was non-white children who screened positive more frequently (16).

Several studies included in this review underscored the relevance of targeted, culturally sensitive, and system-level approaches to ASD programs or services in addressing disparities in autism care (57,60,62,63). Culturally concordant interventions, such as the SoC parent training program developed by the COA Foundation, have significantly boosted parental empowerment in Black/African American communities by enhancing confidence and advocacy skills (60). These studies emphasize that culturally responsive approaches and provider-patient cultural concordance are crucial for effective early intervention among diverse populations (60,61,63). These align with findings from previous studies that demonstrated how culturally responsive interventions, compared to non-adapted interventions, can achieve significant positive outcomes for children with ASD and their families (52,79,87,88). For instance, a meta-analysis by Lee et al. (88) documented significant improvements in social communication and mental health, as well as enhanced mental health and fidelity of strategy implementation for parents. Cultural adaptation practices that integrate knowledge of the lived experiences and culture of Black/African American individuals, family-driven care principles, and receptivity to community input foster trust within minority groups (52,57,62). The authors emphasized that such adaptations do not diminish the efficacy of interventions and are essential for effective service delivery. Adapting interventions to be culturally responsive by integrating knowledge of lived experiences, family-driven care principles, and community feedback ensures that interventions are effective and acceptable to minority populations (52,88). Addressing participation barriers by tailoring programs to meet the needs of families experiencing poverty and racism ensures that interventions are accessible and relevant to those most affected by disparities (87). Inclusive research practices that emphasize the inclusion of minority populations and adapt interventions based on community input are necessary for developing effective strategies to address systemic inequities in ASD services (78). However, a systematic review by Davis et al. (52) identified limited culturally responsive interventions specifically for Black/African American autistic individuals, highlighting the need for further research and adaptation of existing interventions to meet the specific needs of this population.

Mistrust in healthcare systems is identified as a significant barrier to accessing ASD services among minority groups. Historical and systemic mistrust hinders engagement with traditional autism services, particularly among Black/African American families (57,59-61,63). To build trust and improve engagement, community engagement strategies have proven effective. The SoC program utilized Black/African American parents as facilitators, creating a culturally concordant environment that fostered trust and increased parental involvement (60). Embedded care models within communities, such as the Children’s National Hospital intervention program, addressed local needs and built trust within marginalized communities through partnerships and direct engagement (59). Leveraging existing relationships by integrating diagnostic services within primary care settings enhances continuity of care and builds trust (59,61). Community engagement and trust-building interventions included embedding care coordinators and navigators within communities to assist families in navigating the healthcare system, reducing disparities in service access (58,59,61,62), and advocating for cultural competence training for healthcare providers to improve interactions with diverse populations and enhance trust (63). Ensuring that caregivers share the cultural background of those they assist has been shown to enhance care acceptance and support the delivery of culturally appropriate services (89,90).

Other research noted the crucial role community-based programs play in addressing the specific needs of minority populations. In Castelin et al. (74), the importance of partnering with community leaders and advocacy groups to understand and mitigate the barriers faced by Black/African American families was strongly emphasized. The study identified six areas of need regarding services for Black/African American children with autism and their caregivers. Recommendations include improving access to culturally responsive care, integrating caregiver priorities, engaging in collaborative decision-making, providing accessible roadmaps for navigating services, connecting caregivers to care management professionals, and offering mental health support resources (74). The Family Peer Advocate (91) model was shown to be effective in providing family-to-family support, facilitating engagement, and increasing access to care. The model significantly increased knowledge of ASD and reduced stress levels among Black/African American and Hispanic/Latino caregivers compared to treatment as usual. Similarly, the Fostering Advocacy, Communication, Empowerment, and Support (FACES) program strengthened advocacy skills, empowerment, and community support among Black/African American parents of children with autism (92). Participants in the program valued the opportunity to network, learn from shared experiences, discuss stigma, and develop support systems within a culturally relevant context. The PTA—adapted for Black/African American parents—addressed participation barriers and material burdens faced by families experiencing poverty and racism (89). Integrating caregiver priorities and engaging in collaborative decision-making are crucial strategies for building trust and improving service delivery (74).

Addressing systemic inequities requires comprehensive interventions at multiple levels, including policy initiatives. Policy-level initiatives, such as the MCHB program, necessitate a targeted approach to close screening and intervention gaps in underserved and rural areas, suggesting that federally funded programs should prioritize these regions (58). The program aided the establishment of practice guidelines and specialized tools, thereby improving diagnostic and treatment processes across the nation. Other macro-level intervention programs exist, such as the six cross-cutting policy principles developed by Gilchrist et al. (93) to guide recommendations for addressing behavioral health disparities. These principles include ensuring sufficient and sustainable funding, improving data collection and disaggregation by race and ethnicity, establishing behavioral health equity and quality measures, prioritizing community-driven interventions, addressing stigmatizing language in laws and policies, and creating more equitable governance structures and policymaking processes. Action plans included the need to increase access to care, address social determinants of health, expand and retrain the workforce to meet the needs of minoritized communities, expand insurance coverage, enforce parity laws, and acknowledge additional disparities faced by intersectional populations due to racism and systemic oppression (93).

Despite national efforts and federally funded programs aimed at improving ASD services, persistent delays in diagnosis among Black/African American children highlight the need for more coordinated, systemic interventions to enhance early intervention opportunities and improve overall service accessibility (57-59,61,62). Integrating ASD diagnostic and intervention services within primary care settings holds promise in leveraging existing relationships and infrastructure, thereby making services more accessible and acceptable to marginalized populations (59,61). Employing technology, such as telehealth interventions, could further overcome barriers related to specialist shortages and geographic isolation in rural areas (63).

Lastly, it should be noted that although this review aimed to examine interventions targeted at closing racial disparities in ADHD and ASD services, none of the reviewed studies focused on children with ADHD nor acknowledged the comorbidity or overlapping symptoms of ADHD and ASD (4-8,94-103). This is despite well-documented evidence that children with ADHD face challenges that are similar to those their ASD counterparts do in accessing care, including systemic inequities (13,104,105), cultural factors (105-109), and mistrust of the healthcare system (106). The absence of ADHD-focused studies in the review suggests a possible dearth of interventions addressing these barriers to care; however, it is also worth considering the possibility of publication bias, as relevant studies might exist but remain unpublished or less accessible. This gap in the literature highlights the need for future research to develop and evaluate interventions specifically aimed at reducing racial disparities in ADHD services and to explore the intersectionality of ADHD and ASD in marginalized populations.

Strengths and limitations

One of the primary strengths of this review is its identification of critical knowledge gaps, particularly the absence of ADHD-specific interventions for Black/African American children. This gap highlights areas where current practices fall short, providing valuable insights into future research and policy development aimed at improving access and outcomes for minority children with ADHD and ASD. The reviewed documents’ methodologically diverse approach, incorporating mixed methods, surveys, and document reviews, further enhances its findings. Additionally, the review includes interventions across multiple levels—macro-level policies, meso-level community programs, and micro-level interventions with families—strengthening the applicability of its findings across healthcare contexts.

However, several limitations in this systematic review affect the scope and applicability of its findings. The studies included in this review are often regionally focused, particularly in areas such as Washington, DC, Maryland, and rural Appalachia, limiting the generalizability of this review’s findings to broader populations. Methodological weaknesses across the reviewed studies, including small sample sizes, lack of control groups, and retrospective designs, further reduce the overall strength of the evidence analyzed in this review. Additionally, the predominance of ASD-focused studies and the lack of ADHD-specific interventions create an imbalance, making it difficult for this review to fully address disparities affecting children with ADHD. Furthermore, the timeline of this review (January 2019 to October 2024) may have resulted in the exclusion of relevant interventions published before this period, potentially omitting earlier but still impactful strategies that address disparities. Collectively, these limitations constrain the ability of this systematic review to provide fully generalizable insights into disparities and interventions for underserved populations, particularly Black/African American children. Despite these constraints, this review identifies key gaps in the literature and serves as a foundation for future research and policy improvements to advance healthcare equity for Black/African American children with ADHD and ASD.

Implications and actions needed

To reduce disparities in care for Black/African American children with ADHD and ASD, clinical practice should integrate culturally sensitive approaches and early diagnosis. Family-centered care that properly educates parents can improve engagement and reduce mistrust, while embedding diagnostic services in primary care facilitates earlier identification. Multisystem approaches—such as care coordinators and community programs—help reduce access barriers and enhance care quality. Provider training in cultural competence ensures that interventions meet minority needs. The lack of ADHD-focused interventions reveals a critical gap, emphasizing the need for tailored approaches. Black/African Americans should be encouraged to study healthcare-related courses to provide culturally appropriate care to Black/African Americans and other minority populations. Policymakers should support equitable access through targeted funding and initiatives that prioritize racial equity.

Conclusions

This review highlights systemic inequities affecting Black/African American children with ADHD and ASD, including delayed diagnoses and barriers to timely care. Culturally tailored interventions, like the SoC, PTA, and BBB programs, when scaled up, can empower parents and improve access. Integrating diagnostic models in primary care settings will reduce wait times, enabling earlier interventions. Trust-building through community engagement and culturally aligned programs is essential to address historical mistrust in minority communities. While policy-level initiatives, such as those funded by the Autism CARES Act, contribute significantly, more coordinated efforts are needed. The lack of ADHD-specific interventions underscores a critical gap, necessitating a multi-level approach to ensure equitable care.

Acknowledgments

We are grateful for the institutional support provided by California State University, Dominguez Hills (CSUDH), the Center for Family Health Initiative (CFHI), Southeastern Louisiana University, and Purdue University.

Footnote

Reporting Checklist: The authors have completed the PRISMA reporting checklist. Available at https://pm.amegroups.com/article/view/10.21037/pm-24-75/rc

Peer Review File: Available at https://pm.amegroups.com/article/view/10.21037/pm-24-75/prf

Funding: This project was supported by the Cancer Disparities Research in Rural and Underserved Communities: RURaL (Reaching the Underserved, Rural, and Low-Income) Lab for Dissemination and Implementation Research in Cancer Disparities, which provided funding for the effort and time of Principal Investigator Michael Preston, PhD, MPH.

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