Autism interventions designed or adapted for the Black/African American population: A systematic review

Abstract

The needs of the Black/African American population in the United States have historically been neglected in research, including in the development of therapies and services to support people with autism. The scope of interventions to support autistic people that are designed or adapted to be culturally responsive to the Black American population is not known. The state of these interventions systematically addressing cultural factors is also underexplored. The present systematic review examined the research evidence of autism interventions either designed or adapted for Black persons in the United States. The search did not have a specific date range but identified literature starting in 1999, and the search ended in 2023. A total of eight studies were identified and reviewed: Four were interventions designed specifically for the Black autistic population, one was an adapted intervention, and three were interventions evaluated with a Black autistic sample. To evaluate these studies, we used the Cultural Adaptation Checklist and found that few autism interventions are systematically adapted for Black individuals. Autism researchers that have engaged the Black autistic population or their families have been thoughtful in ways of engaging; however, there was no universal framework that drove development or adaptation efforts of these interventions. The development of more culturally responsive autism interventions (i.e. adapted evidence-based interventions) for the Black population offers promise for more equitable autism practices.

Lay abstract

Black/African American people in the United States who have a diagnosis of autism often experience service-related disparities, including not having the same access to high-quality autism and related care (e.g. behavioral interventions), and are less likely to have sustained treatment engagement across their lifespan. While interventions to support autistic people are typically designed to be universal, there is concern that these interventions not being tailored to the Black/African American population could reduce the overall impact due to a lack of responsiveness to the needs of the Black children or families who receive the intervention. The current systematic review summarized research on interventions developed for the Black autism community, including Black children with autism and their caregivers. After a comprehensive, systematic search, eight peer-reviewed publications were identified that met the study’s inclusion criteria. The majority of the interventions were tailored to Black caregivers of children with autism. Autism researchers demonstrate different strategies for engaging Black caregivers in culturally responsive ways; however, more research into these interventions is needed in order to assess their effectiveness. In addition, there are still limited interventions adapted to be culturally responsive to Black/African American autistic people. The Cultural Adaptation Checklist framework is a novel approach with promise to become the standard for adapting interventions to meet the needs of culturally diverse groups. Cultural responsiveness is an important facet in the development of interventions that produce optimal outcomes for the range of diversity in the United States and is an important step to achieving equitable autism research practices.

Introduction

Interventions that support autistic people can promote resiliency; however, it is not universal practice for autism interventions to be adapted for the Black¹ (African American) population. For individuals with autism,² interventions help support socialization, communication, life skills, and adaptive functioning, thus boosting quality of life and enhancing interpersonal connections (W. M. Cheng, Smith, et al., 2023; Gabbay-Dizdar et al., 2022; Koegel, 2000; Rogers, 2000). Research also underscores the significance of interventions for autistic people in fostering family resilience and enhancing coping skills among families with autistic children (Ghanouni & Hood, 2021). In the U.S. context, African Americans often face delayed autism diagnosis, which prevents them benefiting from early autism intervention services, with the cascading effect of autism care inequities occurring across the lifespan (Fombonne & Zuckerman, 2022). Reasons for African Americans experiencing delays in receiving autism spectrum disorder (ASD) diagnoses are multifactorial (i.e., healthcare accessibility, socioeconomic issues, institutional policies, inadequate autism-related services, missed healthcare visits, and insufficient family-centered care; Liptak et al., 2008; Montes & Halterman, 2011). Disproportionality in misdiagnosis or incomplete diagnosis that contributes to a late diagnosis or even undiagnosed cases of autism in the United States among the Black population is an ongoing and under-addressed social justice issue (Garb, 2021; Ramclam et al., 2022; Stoll et al., 2021).

Autism is a heterogeneous neurological condition with characteristics such as a lack of social motivation (i.e. chronic social inhibition), restricted and repetitive behaviors, and differences in emotion recognition and emotional regulation (Lord et al., 2020). Autism prevalence is 1 in 36 among 8-year-old children, with recent emerging evidence of historical shifts in the rates of ASD among minoritized groups, including the Black population (CDC, 2023). Furthermore, the 2023 prevalence of autism among 8-year-old Black children is cited as 2.9% compared to the 2.4% prevalence among 8-year-old White children (CDC, 2023).

Autism evidence-based interventions

The field of autism research has advanced with a number of interventions developed to support autistic persons and their families. As noted, these interventions provide support across areas such as behavior management, communication, social skills, and activities of daily living (Duncan et al., 2022; Provenzani et al., 2020). Autism-specific evidence-based interventions (EBIs) include: Applied Behavior Analysis (ABA), Early Start Denver Model (ESDM), Relationship Development Intervention (RDI), and Cognitive Behavioral Therapy (CBT); however, there is no evidence to date that these common interventions are adapted specifically for racially, ethnically, and culturally diverse populations (Pham & Charles, 2023; Pickard et al., 2019). Furthermore, autism interventions have historically been normed on White samples, and increasingly attention is being called to this issue (Čolić et al., 2022). EBIs that dismiss cultural factors among diverse populations can potentially limit effectiveness and generalizability (Barrera et al., 2013). Even when an intervention has been normed on racially, ethnically, and culturally diverse samples, the degree to which the intervention maps to the specific cultural needs of minoritized populations is hardly thought of in autism research. In recent years, a few researchers have prioritized adapting autism interventions for persons of color, including among Hispanic and Black populations (Dababnah et al., 2023; DuBay, 2022; O’Connor et al., 2020).

Interventions designed or adapted for Black persons in the United States

Black scholars have a long legacy of using scientific inquiry to examine socio-cultural factors (Du Bois, 1899; Wilson et al., 1996), identifying culturally sensitive approaches to center and include Black persons in research (Cauce et al., 2002; Corbie-Smith et al., 1999; Hatch et al., 1993). Along this spectrum of knowledge development, Black scholars have been pivotal in the development of culturally relevant interventions for African Americans (Coard et al., 2004; Watson-Singleton et al., 2019). Concerning autism intervention, the underutilization of services and high attrition rates of African Americans (and other populations of color) during intervention uptake can result from factors such as a lack of trust and elevated levels of disenchantment while in treatment, all of which can be viewed as artifacts of unmet cultural needs (Frierson et al., 2019; Moore et al., 2023). In behavioral health research, the racial/ethnic/cultural concordance of therapist-patient is repeatedly cited as a culturally responsive, evidence-based approach that can increase the satisfaction of participants in clinical settings (Cheng et al., 2023; Moore et al., 2023).

Therapists of color often have unique soft skills (e.g. code-switching abilities) that facilitate effective engagement with persons of similar cultural/ethnic backgrounds, even in the context of maintaining a high level of fidelity to EBIs (Hall et al., 2021); however, there is no guarantee that a provider of color and a client of color would be a good fit based solely on similar racial/ethnic identities (McMaster et al., 2021). In a study of 47 Black caregivers who completed a survey and participated in a focus group, the majority (83%) felt it was important for there to be racial concordance between the therapist and the patient (Moore et al., 2023). While there are a number of EBIs (non-autism-specific) developed for sub-populations within the Black community (Herbst et al., 2014; Miller et al., 2012), there is a gap in EBIs designed for persons with developmental disabilities. In addition, while some caregiver-centric interventions have been adapted for Black caregivers (e.g., dementia caregivers; Alexander et al., 2024; Brewster et al., 2020; Gallagher-Thompson et al., 2003) to promote well-being, we have little knowledge regarding interventions that have been either designed or adapted for Black caregivers of children with autism.

Cultural adaptation of autism interventions

Racial reckoning in research relates to the acknowledgment of a research-to-practice gap in autism interventions that address the needs of historically minoritized groups. Demographic changes in the U.S. population have also amplified the need for treatments and interventions that are sensitive to the range of cultural diversity throughout the nation (Bernal et al., 1995; Buzhardt et al., 2016; Forehand & Kotchick, 1996; Magaña et al., 2020). Because of research on standard autism therapies being conducted with primarily White subjects, the results may not be applicable or generalizable to people of color. For instance, Forehand and Kotchick (1996) suggest that parent training programs must be cognizant of the cultural values undergirding parenting styles in different communities to ensure successful implementation across racial groups.

Bernal et al. (1995) stress the importance of cultural sensitivity in the design and implementation of interventions and posit an Ecological Validity Framework (EVF) to ensure that the assumptions of the clinician or investigator match the expectations and understandings of the target population. Davenport et al. (2018) conducted a comprehensive review of articles focused on adapted social skills interventions for individuals with autism (published from 2010 to 2017). They found the following: (1) Few studies gave a demographic breakdown of their subjects, (2) people of color were underrepresented, and (3) cultural adaptation was unaddressed. There is evidence, however, that culturally adapted interventions have the best outcomes (Hall et al., 2016); for example, Barrera et al. (2013) found that culturally adapted public health measures were the most effective ones. Similarly, in a meta-analysis of studies from around the world, Hall et al. (2016) discovered that culturally adapted psychotherapies had the largest effect size.

In addition, Lee et al. (2023) created the Cultural Adaptation Checklist (CAC), which draws on the work of Bernal et al. (1995) and the EVF. The CAC identifies factors involved in working with diverse populations and categorizes them into the following seven dimensions: (1) Language: translating materials into more than one language when necessary and using words and phrases recognized by the target population; (2) Persons: establishing relationships with community organizations and other stakeholders and working closely with them through all phases of the intervention; (3) Content: including information that has practical relevance and/or cultural significance to the target population; (4) Goals: making sure intervention objectives align with the priorities of the target population; (5) Methods: administering the intervention in a way that incorporates the needs and preferences of the target population; (6) Context: taking into account the various settings (i.e. geographic, economic, and political) that shape the lives of the target population; and (7) Process: soliciting feedback from community stakeholders and incorporating it into the intervention. Process is the foundation of the other six dimensions.

Cultural adaptation of autism interventions is in its infancy, occurring in the last decade, beginning with a focus on the Latino population (Buzhardt et al., 2016; DuBay et al., 2018; Magaña & Vanegas, 2017). In studies of autistic Latino populations, a common approach has been to recruit Latino caregivers of autistic children, with a focus most typically on education and empowerment (Buzhardt et al., 2016; DuBay et al., 2018; Magaña et al., 2017, 2020). We found one study that was unique in its focus of adapting a transition-to-adulthood program for Spanish-speaking Latino families through a multi-staged process (Kuhn et al., 2020). It appears that intervention studies that target autistic Asian Americans are sparse but do exist (Li & Kimble, 2016; Xu et al., 2023). At this time, intervention studies that focus on the autistic Indigenous/Native American population in the United States are also sparse (Lindly et al., 2023).

There is a growing awareness that the intersectional realities of being Black and autistic cannot be ignored in research and practice. From an intervention standpoint, the unique needs of the Black autistic populations and their families have been given some consideration (Davenport et al., 2023; Goldman et al., 2018); however, we do not know the scope of these efforts. We also do not know the quality of these intervention efforts (i.e. the integration of cultural factors). Furthermore, the extent of the autistic Black population as a focus in intervention research is currently not known.

Purpose of the study

The focus of this systematic review was to (1) identify current interventions designed or adapted for the Black autistic community (children, youth, adults, caregivers) and (2) examine the extent to which cultural factors (language, persons, content, methods, goals, context, process) were integrated into the adaptation/implementation of interventions for Black autistic populations and their families.

Methods

We conducted this review according to the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) statement (Liberati et al., 2009). In this review, we defined cultural adaptation as any modification or tailoring of intervention strategies to align with the cultural characteristics of the target population. This could include language adjustments, incorporating cultural beliefs and practices, or adapting intervention methods to be more relevant and accessible to the community (Bernal et al., 1995; Lee et al., 2023).

Search strategy

We searched designated databases for peer-reviewed articles describing cultural adaptations of interventions to support autistic people specific to the Black/African American population with the guidance of an expert librarian who advised on specific keywords to search in the following electronic databases: Ovid MEDLINE, Web of Science, Embase, PsycINFO, and ERIC. The combination of key search terms used to identify articles included autism or Asperger syndrome (autis* or asperge* or kanner), Black or African American (black or blacks or ((afri* or afro*) adj2 (desc* or america* or origi* or ancest*), and interventions (adapt* or adjust* or assim* or accomod* or integr* or modif* or customiz* or valid* or translat*). Our search of interventions included interventions specifically for the Black population with autism, and we used search terms to ensure that adapted interventions were also included. Furthermore, our search included intervention studies that exhibited any degree of adaptation, modification, or customization regarding the Black or African American populations in autism-specific intervention (e.g. EBI, interventions designed for other racially/ethnically diverse groups, or interventions for typically developing samples).

Review criteria.

Literature published in the United States was included. We had no specific start date for the initial search; however, Covidence retrieved articles beginning in 1999, and the end of the search was March 2023. Inclusion criteria for studies were (1) peer-reviewed U.S.-based intervention studies, published in English; (2) participants identified as autistic; (3) an all-African American/Black sample or a subgroup of African American participants; and (4) a cultural adaptation component. Intervention studies were excluded if a stratified sample of Black participants was not included.

Study-selection process.

Data were extracted using Covidence, a web-based screening and data-extraction tool (www.covidence). A total of 684 peer-reviewed articles were originally reviewed (see Figure 1). During the title and abstract screening stage, 659 articles were excluded since they did not meet inclusion criteria; 17 articles were excluded at full-text review, leaving eight articles in total for data extraction.

Figure 1.

PRISMA diagram of search process.

Data extraction.

Studies that met final eligibility criteria were extracted in Covidence by A.M.D., O.M., and G.B.A. Each study was reviewed by one author independently and then reviewed by another author to ensure accuracy of reporting. All discrepancies were discussed and resolved between reviewers. Studies were coded for the following: country in which the study was conducted, target population, number of study participants, study design, intervention type, and target outcomes.

Quality assessment.

Studies that met final eligibility criteria were extracted by A.M.D., O.M., and G.B.A. The studies were assessed based on the following domains of cultural adaptation: (1) persons, (2) methods, (3) goals, (4) context, and (5) process. The criteria were drawn from the CAC (Lee et al., 2023). The CAC emphasizes collaboration as an iterative process with the minoritized population to culturally adapt interventions with greater accuracy to the population of interest. A.M.D., O.M., and G.B.A. met to pilot test charting one study included in the pool of articles for final review. Any discrepancies in charting pertaining to data extraction and quality assessment were resolved during this meeting. The remaining seven studies were assigned to two team members to chart, followed by meetings where discrepancies in reporting were discussed and consensus on final reporting were made.

Some authors identified as either autistic or neurodivergent and were involved throughout the review process, including taking part in a full review of studies and interpretation of findings.

Results

Eight studies published since 2017 met inclusion criteria. These eight peer-reviewed publications focused on carrying out interventions with autistic Black individuals or their caregivers. The characteristics of these eight intervention studies are summarized in Table 1. Results are divided and discussed based on the following categories: (1) autism interventions designed for Black autistic persons and caregivers, (2) autism interventions culturally adapted for Black autistic persons and caregivers, and (3) autism interventions evaluated with Black autistic persons and caregivers. Four studies were designed specifically for Black persons (i.e. Black autistic youth, Black parents raising children with autism). One study was based on an intervention adapted for Black parents raising children with autism. Three studies were interventions evaluated with an African American sample (i.e., African American children with autism in low-income homes, Black families with children with autism).

Table 1.

Data extraction chart.

Authors	Country in which the study conducted	Target population	Total number of study participants	Study design	Target outcomes
1. Goldman et al. (2018)	United States	Low-income Black parents of autistic children	4	Multiple baseline across routines design	Parent implementation of visual schedule procedure in the home
2. Davenport et al. (2023)	United States	Black adolescents with autism and caregivers	5 (youth); 10 (caregivers)	Single-subject research design (i.e. concurrent multiple baseline across participants)	Law enforcement interaction skills; psychophysiological measures (i.e. cortisol levels, heart rate variability, and self-perceived stress)
3. Dababnah et al. (2023)	United States	Parents of Black autistic children	7	Non-randomized experimental study	Autism knowledge, parent stress and depression, family outcomes (e.g., advocacy), child behavior, service knowledge and access
4. Pearson et al. (2023)	United States	Black parents raising autistic youth	16	Non-randomized experimental study	Advocacy ability, understanding of autism communication and behavior, parent professional communication
5. Robertson (2016)	United States	African American families with children with autism, parent-child dyads	3	Non-randomized experimental study	Adaptive alternatives to problem behaviors, i.e. “safe behavior”
6. Jamison et al. (2017)	United States	Black and Hispanic caregivers of children with autism	39	Randomized controlled trial	Utilization of autism services by families, caregivers’ knowledge of autism and treatment options, family stress and caregiver perceptions of support and empowerment
7. Pearson & Meadan (2021)	United States	African American parents/caregivers of autistic children	10	Prevalence study	Advocacy skills and feelings of empowerment
8. Kaiser et al. (2022)	United States	Black parents of autistic children	147	Intervention with follow-up survey and interview data	Increased advocacy, empowerment, and service utilization

Autism interventions designed for the Black autistic population/caregivers

Three out of the four intervention studies intentionally developed for the Black autism community were designed for Black parents of children with autism. One study was designed for Black adolescents with autism. Two of the studies were based on the FACES (Fostering Advocacy, Communication, Empowerment, and Support) intervention, a 6-week intervention focused on the Theory of Change (i.e. parent knowledge, parent perceptions, and parent and child outcomes; Pearson et al., 2023; Pearson & Meadan, 2021). The third study, also designed for Black parents, was based on a six-week culturally concordant spectrum of a care parent training program. The intervention tackled healthcare engagement challenges/barriers and related structural factors including current and historical trauma (Kaiser et al., 2022). All three of these studies resulted in increased advocacy abilities of Black parents of children with autism.

In the fourth study by Davenport et al. (2023), efforts were taken to develop an intervention targeting police safety among Black adolescents with autism. The study included feedback from Black adolescents with autism and their caregivers to inform the development of a culturally responsive intervention (i.e., training content and methods). Evidence emerging from the study suggests that the intervention could have positive holistic effects for Black adolescents with autism such as improvements in skillfulness when interacting with the police and decreased arousal when encountering law enforcement officers (LEOs).

In these four studies, cultural adaptation practices included strategies of integrating knowledge of the lived experiences and culture of Black persons in the United States, integration of family-driven care principles (i.e., Family Peer Advocate Code of Ethics), and receiving feedback from the community of interest. The most common approach to gaining insights on how to adapt an intervention was having receptivity to input from the community. Kaiser et al. demonstrated the clearest intentionality in forming a strong partnership with stakeholders/the community. Elements of the CAC were most prevalent in the study by Kaiser et al. overall compared to the other three studies. The study by Kaiser et al., for example, demonstrated being culturally grounded in key areas including the intervention being developed by the Black community, having culturally concordant facilitators with similar lived experiences as parents of children with autism, and being holistic in addressing the needs (e.g., unresolved areas of life) of study participants. The studies on caregivers demonstrated a prioritization of the needs of Black caregivers of children with autism and showed an impact in improving the skills necessary to resist systemic oppression and marginalization in a variety of contexts (e.g. school and healthcare). The study on Black adolescents with autism was multi-pronged, informing how interventions targeting safety with LEOs can benefit Black adolescents with autism and their families.

Autism interventions adapted for the Black autistic population and caregivers

One study (Dababnah et al., 2018) was an adapted intervention for caregivers of Black children with autism. The intervention draws from an intervention, Parents Taking Action (PTA), originally designed for the Latinx community with low financial resources. The intervention was based on a peer-to-peer model with African American parents of the study paired with other African American parents who had older children with autism. The study met most of the CAC domains with careful attention given to engaging stakeholders, incorporating stakeholder feedback (i.e., parent leaders), and meeting the needs of participants throughout the intervention process. As such, the results of the study demonstrated a high acceptability of the intervention by participants along with statistically significant gains in key areas (e.g., advocacy, autism knowledge, and levels of stress).

Autism interventions evaluated with an African American sample

Three studies (Goldman et al., 2018; Jamison et al., 2017; Robertson, 2016) investigated the efficacy, effectiveness, and acceptability or effects of implementation of an autism intervention with the Black autism community (i.e., children with autism and caregivers of children with autism). These interventions were heterogeneous, including parent-implemented visual schedules, a family peer advocate (FPA) model, and a parent-implemented behavior intervention. In the study by Goldman et al. (2018), authors implemented parent-implemented visual schedules for African American children with autism in low-income households and demonstrated mixed results. Furthermore, one dyad showed functional improvement in schedule adherence; the other displayed mixed results. Key differences in participants, treatment fidelity, and challenges in low-income settings were cited as reasons for such variability (Goldman et al., 2018). Similarly, Robertson (2016) evaluated parent-implemented behavior interventions in three African American families using a multiple baseline across participants’ design. The study observed effective interventions for two of the three child-parent dyads with varying levels of parent adherence to treatment, in addition to all parents rating the intervention as acceptable (Robertson, 2016). The study by Jamison et al. (2017) assessed the efficacy of the FPA model for both Black and Hispanic caregivers of children with autism. A key ingredient of the intervention was having mothers (FPAs) experienced in dealing with their children’s mental health needs assist other families with navigating and managing healthcare concerns. Positive outcomes of the intervention included improved treatment compliance, heightened knowledge, and reduced parental stress.

All three of the studies (Goldman et al., 2018; Jamison et al., 2017; Robertson, 2016) took place in naturalistic settings (i.e., home environment) of research participants across studies. All three studies missed some elements of the CAC; however, efforts by Goldman and colleagues demonstrated slightly more congruence with CAC such as working closely with community members and making procedural alterations based on personal preferences of the research participants. The other two interventions could only be cited for having elements of the CAC context domain. For example, with Robertson (2016), there was a demonstration of an understanding of resource levels of the targeted population prior to intervention implementation, and with the study by Jamison et al. (2017), the social and economic context of the target population was considered.

Synthesis of studies and dimensions of the CAC

The language dimension of CAC was unaddressed in seven out of seven studies, such as no inclusion of culturally relevant terminology with participants (Table 2). In the one study with a focus on autistic adolescents, there was also no effort to assess whether the autistic participants understood or were accepting of the concepts used. The persons dimension of CAC was reflected in five out of seven studies. These five studies (Dababnah et al., 2018; Davenport et al., 2023; Goldman et al., 2018; Jamison et al., 2017; Pearson et al., 2017) either collaborated with the community stakeholders or were purposeful in being guided by the feedback of study participants.

Table 2.

Quality assessment (Cultural Adaptation Checklist) for intervention studies.

Authors	Title	CAC Language	CAC Persons	CAC Methods	CAC Goals	CAC Context	CAC Process
Goldman et al. (2018)	Effects of Parent-Implemented Visual Schedule Routines for African American Children with ASD in Low-Income Home Settings.	No indication that intervention included culturally relevant terminology.	Researchers worked in collaboration with the target population, such as recognition of personal preferences.	Intervention was administered based on personal preferences of participants but no indication that culture was involved.	Intervention adapted to participants’ personal preferences, but they were not culturally related.	Social context understanding was predetermined with no collaboration with the target population indicated.	Researchers worked closely with community members and made procedural alterations based on the latter’s personal preferences.
Davenport et al. (2023)	An Initial Development and Evaluation of a Culturally Responsive Police Interactions Training for Black Adolescents with Autism Spectrum Disorder.	There was no explicit mention of the use of culturally relevant and familiar terminology; it does not appear that the youth were engaged to assess their understanding/acceptability of concepts and terms during the intervention.	The feedback of both the Black adolescents with autism and their caregivers as stakeholders was considered important to guide this pilot intervention intended to promote safe police interactions.	Caregiver stakeholders informed feasible adaptations to study design and development of training approaches. Diverse recruitment was prioritized in order to represent within-group cultural differences (intersectional recruitment approach).	It is unclear if researchers considered the measures were appropriate and sound. Social validity of the outcomes of the intervention was assessed.	Caregivers of youth in study were included throughout intervention process; caregivers provided context and insight.	Feedback and considerations of caregivers incorporated in iterations of study design/adaptations.
Dababnah et al. (2023)	Parents Taking Action Adapted to Parents of Black Autistic Children: Pilot Results.	It was not explicitly stated that language was considered as a key intervention item.	Trained parent leaders and community members drove the study, while participant feedback shaped the program’s direction.	The study employed parent training, flexible scheduling, and virtual options for accessibility; emphasized ongoing research; and utilized diverse recruitment methods to address research distrust and autism stigma in Black communities, acknowledging challenges.	The study partnered with community stakeholders to implement a culturally aligned intervention, measuring parents’ autism knowledge and family outcomes.	The research team was mindful of the population being at risk of high cancelation rates. As part of the intervention implementation, there were flexible options (e.g., home visits and virtual session), and there were accommodations made for the need to reschedule.	The study partnered with community stakeholders, training parent leaders to implement the intervention and adapting it for Black families. Trusting relationships were established, resulting in high participant satisfaction and valuable feedback for future implementation.
Pearson et al. (2023)	Best FACES Forward: Outcomes of an Advocacy Intervention for Black Parents Raising Autistic Youth.	The article did not expressly include linguistic communication for the target group. There was no clear mention or use of culturally-linguistically appropriate terms related to the intervention.	The study partnered with autism groups and sought family involvement in sessions on autism in Black communities. The study’s recruitment strategies engaged caregivers, parents, and certified professionals working with the target population.	The study, designed to ease logistics for underrepresented families, used diverse recruitment strategies with local autism organizations.	The program, developed in collaboration with stakeholders, addressed the target population’s needs and values. Outcome measures such as empowerment, advocacy skills, and autism knowledge were culturally appropriate and aligned with the target group’s needs.	The study demonstrates understanding of the target population’s culture, resource levels, and incorporated strategies for retention based on population’s need.	The study engaged community stakeholders, incorporating feedback to enhance the intervention. Information on prior piloting, understanding of the target population, and efforts to build trust were not mentioned.
Robertson (2016)	Effectiveness and Acceptability of Parent-Implemented Behavior Interventions for Children with Autism in Three African American Families.	There was no explicit mention of the use of culturally relevant and familiar terminology nor were families engaged to assess their understanding/acceptability of concepts and terms during the intervention.	There is no evidence to suggest that the intervention included community stakeholders to adapt the intervention or to support intervention delivery.	There is no evidence to suggest that the preference and context of the targeted population informed the development of the intervention delivery model.	There is no indication that effort was taken to engage community stakeholders in order to identify values and expectations of the targeted population.	Researchers demonstrated an understanding of resource levels of the targeted population prior to intervention implementation. There was no demonstration of an understanding of the culture of the targeted population.	The intervention did not demonstrate partnership, piloting of an adapted version of the intervention, or revision based on multiple iterations of feedback. It was stated broadly that intervention procedures were individualized to each dyad.
Jamison et al. (2017)	Examining the Efficacy of a Family Peer Advocate Model for Black and Hispanic Caregivers of Children with Autism Spectrum Disorder.	Inclusion criteria were based on sufficient English comprehension and reading abilities; however, there was no mention of the use of culturally relevant/familiar terminology or local dialects with the participants. There is no indication that understanding of concepts and terms was assessed during the intervention.	The study involved community stakeholders and formed partnerships for both the adaptation and implementation phases.	The study uses diverse methods for recruitment and participant retention. The implementation and adaptation of the intervention also take into account the targeted population’s preference and context.	The study seems to partially meet this category by aligning the intervention goals with the needs of the target population. However, the specific cultural measures for assessing outcomes are not explicitly stated.	The study considers the social and economic context of the target population. However, the political context is not explicitly mentioned.	The study follows a process that involves stakeholders and the targeted population throughout the adaptation and implementation of the intervention.
Pearson & Meadan (2021)	FACES: An Advocacy Intervention for African American Parents of Children With Autism.	There is no indication that culturally relevant terminology was part of the intervention.	Intervention was designed and implemented by authors, who may or may not be members of the community. No indication of other stakeholder involvement.	No indication of consideration of community preference in the development of intervention. However, in terms of delivery, the trainings were held in community settings.	The intervention appears to come from synthesis of the existing literature instead of from community priorities.	The intervention seems to have been designed and delivered based on general research on autism in the Black community. More specific data were received from participant feedback.	No indication of community partnership other than focus groups held before and after the intervention and testimonials solicited from participants.
Kaiser et al. (2022)	A Culturally Grounded Autism Parent Training Program with Black Parents.	No explicit mention of culturally relevant terminology.	The intervention was developed by a Black community-based organization specifically for Black parents of autistic children.	The facilitators delivering the intervention matched the characteristics of the targeted population—Black parents of autistic children.	The intervention was designed and administered with the specific need of the target population for a safe space to address the trauma of systemic racism.	Researchers demonstrated an understanding of the target population’s needs, particularly those that were not being met by other family-training programs.	There was a close partnership established between the researchers, a community organization, and members of the community; however, the iterative process of community stakeholder involvement was less clear.

One study went beyond incorporating participant feedback by having trained community leaders implement the intervention (Dababnah et al., 2018). The methods dimension of CAC was reflected in various ways in five out of seven studies. These researchers were sensitive to their recruitment strategies (e.g., diverse research recruitment) (Dababnah et al., 2018; Davenport et al., 2018; Jamison et al., 2017; Pearson et al., 2017) or attended to personal preferences (e.g., when scheduling, while administering the intervention; Dababnah et al., 2018; Goldman et al., 2018; Jamison et al., 2017).

Two studies matched the characteristics of the facilitators to the study target population, Black parents of autistic children (Dababnah et al., 2023; Kaiser et al., 2022). Black individuals were intentionally placed as facilitators in another study (Pearson et al., 2023). The goals dimension of CAC was reflected to some extent in four out of the seven studies, such as partnering with community stakeholders (Dababnah et al., 2018; Pearson et al., 2023) or aligning goals directly with the target population (Jamison et al., 2017; Kaiser et al., 2022). The context dimension of CAC was reflected to some extent in six out of the seven studies. Socio-cultural contexts were reflected in researchers seeking insights and context from caregivers (Davenport et al., 2023), being mindful of stressors faced by the population and the need for flexibility (e.g. appointment scheduling; Dababnah et al., 2018), being sensitive to resource levels and needs (Pearson et al., 2023; Pearson & Meadan, 2021; Robertson, 2016), and integrated understanding of culture and level of need to inform retention strategies (Pearson et al., 2023).

Finally, the process dimension of CAC was at least partially reflected in five out of the seven studies. These researchers incorporated feedback of study participants (Davenport et al., 2023; Jamison et al., 2017) or of community members (Dababnah et al., 2018; Goldman et al., 2018; Jamison et al., 2017; Pearson et al., 2023) in an iterative fashion. One study indicated that there was a close partnership with community members but lacked a clear indication of iterative involvement with these community stakeholders (Kaiser et al., 2022).

Discussion

This is the first systematic review to our knowledge to examine autism interventions designed or adapted for Black autistic persons and their families. Key findings indicate that the field of autism is in its infancy regarding the development of interventions that center the needs and desires of the Black population; furthermore, there is a striking void in interventions designed for the Black population with autism across the life span; no intervention study included Black autistic adults; no single autism intervention with a focus on the Black population has been developed and tested enough to be deemed an EBI; and many interventions do not consider language needs of the Black population when designing or adapting interventions for this demographic. This review also contributes to the knowledge base of strategies researchers use to meet the most pressing needs of Black parents of children with autism. For example, several researchers either designed or adapted interventions intended to increase parental empowerment and the capacity for advocacy in the face of systemic racism. We situated the studies in the current milieu of intervention studies broadly with attention to autism, interventions that focus on the Black population, and considerations for future directions.

There was supporting evidence that both designing and adapting interventions specifically for the Black autism community had value. A conclusion of this review, however, is that the field of autism is in its early stages, still in its infancy with regard to intervention development and adaptation of existing autism interventions for the Black population in the United States. The lack of precision in approaches to reach the Black population is also prevalent in the domain of assessment, cited as a contributing factor to late diagnosis of Black children with autism (La Roche et al., 2018). For example, the field of autism has struggled to identify autism in Black autistic girls, and the field is behind with adapted autism assessment practices to pick up autism in racially, ethnically, and linguistically diverse populations (Diemer et al., 2022; La Roche et al., 2018; Pham & Charles, 2023). Relatedly, there are no interventions to date that are sensitive to the issue of disproportionately of late-diagnosed Black children with autism.

Based on our review of the manuscripts, no study specifically incorporated the language dimension of CAC. Furthermore, interventions developed must consider how best to incorporate the language needs of Black autistic people, including the use of plain language, considerations for visual supports to ensure understanding of concepts, and consideration for the African American vernacular to bridge concepts and comfortability of participants. Related to being culturally responsive, some of the studies ensured that providers of the interventions were racially concordant with the research participants. While this factor was not studied explicitly, it is important that the role of racial concordance in treatment outcomes be considered for populations with intersectional identities (i.e., race and disability; Davis et al., 2022). A recent publication on cultural-responsive adaptation of a parent-mediated autism intervention for children by Rudrabhatla et al. (2024) clarify that there is “the need to both respond to and validate caregivers’ experiences of racial discrimination” (p. 12). The field of autism research has not given sufficient attention to late-diagnosed Black children with autism; thus, it is important that interventions are developed/adapted with consideration for and inclusion of these individuals. It is especially important to support the needs of these autistic children and their families as this group may be more likely to experience negative synergistic effects of racism, poverty, or other forms of societal oppression. We acknowledge these issues warrant systems-level change beyond research. It is crucial that all systems that influence research (i.e., intervention development and adaptation) as well as clinical care (i.e., who gets their needs made and how) revolutionize to dismantle systematic marginalization of persons of color with autism and their families (Straiton & Sridhar, 2022).

It is important to highlight that the specific efforts made to intervene with Black caregivers are congruent with identifiable gaps in autism care, specifically in the context of autism disparities and the structural consequences of racism + ableism (intersectionality) among Black children with autism (Dababnah et al., 2023; Jones et al., 2020). As such, culturally congruent interventions examined in our study offer promise for informing toolkits and community-based efforts with Black families with autism. These reviewed interventions are not yet established as evidence-based, speaking to the critical importance of research funding to further advance the plausible effectiveness of these interventions. A call to action in autism research to promote diversity, equity, and inclusion is on par with funding researchers who center the experiences and needs of diverse populations within the autism community (Family Voices, 2023); moreover, the efforts of such researchers should be seen, acknowledged, and rewarded (Morgan et al., 2022; Saia et al., 2023).

Supports for autistic people, specifically evidence-based approaches, should be intentionally adapted to support the Black population. ABA, an EBI, has been adapted with the Latino population and can be a potential roadmap for adapting interventions that have high uptake among trained providers (Buzhardt et al., 2016; Mathur & Rodriguez, 2022). As interventions are adapted for the Black population, it is also important to elevate the views and recommendations of Black children with autism.

There is a wide gap between existing autism interventions and those adapted or designed specifically for Black autistic individuals. Only one intervention in our study was explicitly designed for Black autistic people with a focus on adolescents and on promoting safety in police interactions (Davenport et al., 2023). This intervention has practical implications for being a preventive measure for reducing police brutality and police-related fatalities, as the risk of police violence is an often-exacerbated threat for Black autistic people (Hutson et al., 2022; Shea et al., 2021). It is therefore important that promising interventions, such as that of Davenport et al., are funded to address the research-to-practice gap of interventions effective with the Black population. It is also critical that interventions are developed to address intersectionality and multiple social identities that Black youth and young adults have, to promote mental well-being and overall flourishing in the face of ableism and racism. Interventions that address the trauma of racism (Cénat, 2023; Williams et al., 2021) could potentially have utility for adapting with the Black autistic population; however, more research is needed to better understand intersectional oppression and the extent to which autism and race interact to have harmful impacts on Black children, youths, and adults with autism. A few of the studies in our review intentionally included providers who were also African American, representing parent-provider racial concordance (Dababnah et al., 2023; Kaiser et al., 2022; Scharff et al., 2021). While provider-patient (or caregiver) racial concordance is supported by research findings (Moore et al., 2023), the role of racial concordance to best meet the cultural needs of the Black autistic population is understudied. No study to date has explicitly explored the role of racial concordance in the lives of Black autistic people. More research is needed to understand the influence of racial concordance among Black caregivers of autistic children to promote safety, autonomy, and shared decision-making along the trajectory of their children receiving autism and related services.

Researchers should also commit to fostering relationships with lay persons and researchers from these communities (i.e. Black autistic persons, caregivers of Black children with autism, African American researchers, and Black autistic researchers) over the long haul to build deep knowledge for doing justice to the work of cultural adaptation. It cannot be understated that community involvement and co-creation of therapies are pivotal in this process as they build trust in marginalized communities and provide valuable insights into cultural barriers and facilitators, leading to enhanced effectiveness in real-world contexts. More emphasis should also be put into integrating phrases and terms familiar to the African American community when considering the language component of the CAC, as none of the studies reviewed addressed this dimension. There are studies that serve as examples of integrating the African American vernacular in interventions (Crooks et al., 2023; Ward et al., 2015; Woods-Giscombé et al., 2014) that can be drawn from, and we also encourage researchers to engage the community directly to co-create appropriate terms and phrases to promote cultural belonging.

Limitations and strengths

While this study presents important insights into interventions for the Black autism community, it is crucial to acknowledge both its limitations and strengths. Furthermore, limitations of the literature include its narrow focus on predominantly Black caregivers of children with autism. Black youth and adults with lived experiences of autism were seldom the focus in studies. In addition, the studies most likely lacked inclusion of Black autistic persons on the research teams. Some of the studies had low sample sizes, which also impacts the overall generalizability of the studies, and none of the studies were based on randomization. In addition, all studies were human-centric interventions and did not include non-human factors, such as technology-assisted interventions. Limitations of the systematic review included that the authors did not obtain manual guides to completely assess the content domain of CAC and that effect sizes of the interventions were not reviewed.

Despite these limitations, the study also demonstrates considerable strengths. It sheds light on the critical need for interventions tailored to Black autistic individuals and their families, highlighting the importance of cultural sensitivity and inclusivity. By identifying gaps and challenges in current research, the study paves the way for future investigations aimed at expanding the range of interventions, populations, and outcomes examined. This approach not only promises to enhance our understanding of effective autism interventions for Black individuals but also increases the possibility of more equitable autism care, which underscores the study’s valuable contribution to the field.

Future directions

The CAC framework developed by Lee et al. is a newly developed guiding framework for holistically adapting an intervention for populations with autism or other developmental disabilities. The framework is comprehensive and essential in a broader context of a wide range of autism interventions. The practical implementation of the CAC framework requires further development into actionable strategies and best practices for adapting interventions to the diverse groups within the Black community, specifically populations with developmental disabilities. An intersectional approach to addressing the nexus of race and disability in an intervention could be guided by the CAC framework but would likely benefit from the integration of other frameworks, such as the disability justice framework (Saia et al., 2023; Sins Invalid, 2016).

The Black community in the United States is diverse, as some families are from the broader African diaspora (i.e., Africa, the Caribbean) and have differences in cultures and beliefs to which adaptation efforts may not be reflective. It is therefore important that individualized care be provided even within the Black community. To this end, research studies should also begin to look at the heterogeneity within the Black population within the United States and study strategies for ethnic diversity. Similarly, it is important that cultural adaptation research efforts expand beyond the United States such as in other higher-income countries (e.g., European countries and Australia) where Black autistic persons and their families face similar oppressions.

With the current interventions designed or adapted for parents of Black caregivers of children with autism, it is important that there is also consideration on how to adapt these interventions to autistic persons. Furthermore, interventions for autistic persons currently available should continue to be researched for the purpose of adapting to Black autistic persons across different age ranges and other populations of color. In this vein, it is important in research to examine the effects of providers’ concordance based on identities including racial identity, autism identity, and intersectional identity statuses.

Conclusion

This systematic review synthesized the findings of eight peer-reviewed articles, representing different aspects of cultural adaptation practices. The findings of the review provide evidence that adaptation of autism interventions to Black persons has positive effects. Autism in Black communities requires careful consideration for how to intervene with both autistic persons and their families in ways that address their needs and desires and that ultimately have socio-cultural resonance.