Abstract
Gaps in research knowledge pertaining to resiliency factors and strengths among the Black autism community, inclusive of autistic persons and their support system, exist. A scoping review was conducted to further explore quantitative, qualitative and mixed methods studies that investigate resiliency factors and related strengths in the Black autism community in the United States. A total of 436 articles were identified, with 28 studies included in the final review. Results demonstrated that (1) strengths of Black autistic persons across the life course have been disregarded in research; (2) Black caregiver advocacy, while common, is also a developmental process that can be supported by community-based interventions; (3) informal supports including family and friends play an instrumental role in supporting the wellbeing of Black parents of autistic children; and (4) spirituality is often endorsed by Black caregivers of autistic children, such as playing a role in acceptance of the autism diagnosis and with coping with difficult life situations. Research and practice implications are discussed.
Lay Summary
The resiliency of Black autistic persons and their families is largely ignored, and as a result, we know little about this community. Prevailing strengths of Black caregivers of autistic children include advocacy, a reliable support network, and spirituality; however, the strengths of Black autistic persons have not been studied. It is important as a field that the resiliency of the autism community advances to focus more on racially/culturally/ethnically diverse populations.
Yet, differences can be found across cultures and by contextual factors such as social group (e.g., gender, disability, etc.) membership (Dirth & Branscome, 2018; Aldwin, 2004). Focusing on resiliency and supporting factors to resilience (e.g., strengths) in disability communities, such as the autism community, is a growing area of study (Mannino, 2015; Scheffers et al., 2022; Tajik-Parvinchi et al., 2024).
Introduction
Resiliency is often a coping strategy that most individuals face at some point in their lives in response to a variety of stressors and/or adversity. Yet, differences can be found across cultures and by contextual factors such as social group (e.g., gender, disability, etc.) membership (Dirth & Branscome, 2018; Aldwin, 2004). Focusing on resiliency and supporting factors to resilience (e.g., strengths) in disability communities, such as the autism community, is a growing area of research (Mannino, 2015; Scheffers et al., 2022; Tajik-Parvinchi et al., 2024). However, resilience among the Black autism community1 is underinvestigated, with studies on resiliency and autism focusing primarily on white autistic individuals and their family members (McAdoo & Younge, 2009; McConnell & Savage, A. (2015). In a study that examined articles included in the National Clearinghouse on Autism Evidence and Practice (NCAEP) systematic review, Steinbrenner and colleagues (2022) reported that research often included white participants (81% of all studies include at least one white participant) and the largest total group of sample participants was white (65%). The overrepresentation of white participants was consistent across research designs, evidence-based practices categories, and outcome domains that reported race/ethnicity. Furthermore, the majority of existing research on the Black autism community focuses on risk rather than resilience (Davis et al., 2022; Fisher et al., 2024; Onovbiona et al., 2023). For example, recent findings highlight that low-income Black families with autistic children may be at greater risk for exposure to adverse social-structural determinants of health, such as living in neighborhoods with substandard housing and crime, that exacerbate demands on the family unit (Dababnah et al., 2022).
Autism falls under a broad umbrella of developmental disabilities (DD). It is defined as a neurodevelopmental condition marked by differences in social communication, social interaction, and a pattern of restricted and repetitive behaviors, with a prevalence that is similar across racial and ethnic groups (CDC, 2019). Black children and other racially minoritized children, however, can experience disparities in identification/age of initial receipt of an autism diagnosis compared to white children (McDonnell et al., 2019; Schmengler et al., 2021; Zeleke et al., 2019). Provider bias is one contributing factor to autistic Black children receiving a misdiagnosis, incorrect co-morbid diagnosis (e.g., intellectual disability) or a missed diagnosis all together (Habayeb et al., 2022; Onovbiona et al., 2024; Pearson et al., 2020; Shenouda et al., 2023).
The resilience of Black families of autistic children can begin to be chipped away at early in the process of seeking out an initial diagnosis of autism. These families can also face vulnerabilities when seeking out timely linkage(s) to care (e.g., supports and services) for their autistic child. Alongside the challenges of receiving a diagnosis, the out-of-pocket medical expenses for services and treatment can place an economic burden on, particularly, low-income Black families raising autistic children (Hong & Singh, 2019). In a broader societal context, Black families with autistic children can face unfair hardships, largely as the result of structural racism and systemic forms of oppression. These undue hardships are often amplified when interfacing with the health care and educational systems (Lindsay et al, 2024; Menezes et al., 2023). Further, Black families of autistic children often experience inequities in accessing high-quality autism-related services and supports (Onovbiona et al., 2023; Algood & Davis, 2019).
Parents/caregivers of autistic children can face unique challenges in adjusting to having a child with special healthcare needs. Caregivers, regardless of racial/ethnic background, of autistic children are at greater risk of experiencing depression (Bekhet, 2016), anxiety (Schnabel et al., 2020), lower family satisfaction (Halstead et al., 2018), and fatigue (Carbone et al., 2013) than caregivers of typically developing children. However, parents of Black autistic children can face additional challenges that are a result of intersectional disadvantages (e.g., racism + ableism). In turn, this has resulted in higher reported levels of stress than white parents of autistic children (Williams et al. 2019).
Resiliency
Scholars define resilience as “a dynamic process encompassing positive adaptation within the context of significant adversity” (Luthar et al., 2000, p. 1). Resiliency can include an individual’s positive characteristics (i.e., self-esteem) in combination with an individual’s ability to engage in positive cognitions (i.e., meaning making) and behaviors (i.e., accessing social support) (Richardson, 2002). Other terms used to describe resilient populations are flourishing, thriving, and succeeding despite adversity (Pellicano & Heyworth, 2023). These closely linked terms suggest an ability to overcome difficulties or struggles to the point of becoming more successful or functioning at a higher level than prior to the trauma or period of adversity (Hildon et al., 2010). Indeed, the concept of resilience may look different among various historically marginalized groups (e.g., race/ethnicity, gender, religion) and can be influenced by historical (e.g., slavery) and contemporary (e.g., systemic racism) factors.
Black Resiliency in the United States
Resiliency among the Black population in the United States (US) has been well-defined and documented in the literature (Jones, 2023; Theron & Theron, 2014; Payne, 2011). Black resiliency, specifically, can be defined as the ability of Black persons to cope with and thrive in the face of racial trauma and the various forms of racism (Hogg Foundation for Mental Health, 2020). It is crucial to highlight that, for the Black population, the need for resilience is a result of the intersections of race/ethnicity, gender, social class, and other marginalized identities coalescing (Hill, 1998). Moreover, the concept and actualization of Black resiliency stems from Black individuals and Black communities strategically navigating inequities in ways that minimize the pervasiveness of structural racism (Clay, 2019). Black resiliency can involve spirituality, community-centeredness, or familial components that strengthen the resolve of a Black individual, family or larger unit (e.g. neighborhood). Resilience among the Black population in the US can and should be framed from a life course perspective in light of inherent or impending barriers that the majority of Black persons will face irrespective of age (Anderson, 2018; Henson, 2022; Taylor, 2012). Black-white disparities in areas including healthcare (Dickman et al., 2022; Macias-Konstantopoulos et al., 2023), education (Henry et al., 2020) and the criminal justice system (Bass et al., 2023; Dragomir &Tadros, 2020) persist in the US, and because of these inequities, the stark and unfair need to be resilient is often an undercurrent among the Black population.
Iruka and colleagues (2022) developed the Racism + Resilience + Resistance Integrative Study of Childhood Ecosystem (R3ISE) framework to identify and address the interplay between racism and family and community cultural assets among Black individuals in the US. The R3ISE model adapted from Yosso’s (2005) community cultural wealth framework, integrates resilience and the importance of cultural assets/capital. Cultural assets, such as aspirational, linguistic, familial, resistant, and spiritual capital, help Black communities to navigate through the various forms of racism. Aspirational capital refers to one’s ability to maintain hopes and dreams for the future, “even in the face of real and perceived barriers” (Yosso, 2005, p. 77). Linguistic capital includes various modes of communication and language skills, like storytelling, music, and poetry. Familial capital refers to personal, family, and communal relationships and resources accessed via broad kinship and community networks. Resistant capital is the idea that knowledge and skills are used to seek social justice and equal rights and challenge inequality and oppression. Lastly, spiritual capital is the personal faith and belief, communal worship experience, and resources one relies on during challenging times. Extant research on autism among Black persons has also called attention to some of these cultural assets (e.g., spirituality and religious involvement) to cope with stigma and stressors that accompany raising a child with autism (Richardson & Stoneman, 2015). The lens of resilience and cultural assets in Black communities is invaluable, however, to date this lens has not been cast on the Black autism community.
Resiliency in autistic persons and their families
Resiliency for autistic persons is a contestable area due to a) the existence of several definitions of resilience and measures by which resilience is measured (Clark & Adams, 2022), and b) a rightful acknowledgment of the social model of disability (Anderson-Chavarria, 2022; Woods, 2017). Societal-based attitudes and systemic barriers create unfair demands on persons with autism (and other forms of neurodiversity), creating conditions that make it difficult for this population to cope and just be themselves. Therefore, an effective definition of resiliency in this population may view the social barriers faced by autistic people and their families, including cultural and peer stigma, exclusionary attitudes towards autism, and victimization of autistic people and their families, as forms of trauma against which resilience may form (Gunty, 2021; Lai & Szatmari, 2019).
For autistic people themselves, resiliency may represent a lifelong ability to overcome adversities such as these and achieve a positive outcome (Clark & Adams, 2022), or, more specifically, “a desired and meaningful life status” (Lai & Szatmari, 2019). In the context of caregivers of autistic children, adversity can be conceptualized as the “balance between protective factors and risk factors (e.g., child’s degree of disability) in the face of difficult situations” (Ghanouni & Hood, 2021, p. 390). In both cases, resilient outcomes are often subjective, varying on individual experiences, goals, and environments (Jones, 2019). As such, empirical research focused on resiliency in autism may benefit from the use of both quantitative measures to compare overall outcomes, and qualitative measures to capture a more holistic understanding of resiliency (Abdou et al., 2010; Shochet et al., 2022).
To date, factors that have been attributed to increased resiliency in autistic persons range from having an early diagnosis (Stallworthy & Masten, 2023; Szatmari et al., 2016); having greater social participation (Ghanouni & Quirke, 2023); processing of past traumas (Ghanouni & Quirke, 2023); having social support (Hedley et al., 2017); and being intentional with breaks/boundaries to avoid autism burnout (Cleary et al., 2023; Muniandy et al., 2021). In a recent qualitative study by Ghanouni and Eves (2023), 13 autistic adults were interviewed to better understand mechanisms for resilience and coping, with findings corroborating that negative societal treatment resulting from the lack of neurodiversity-affirming attitudes contributes to the need for resilience. Participants also noted active approaches that were resilience-promoting, including adjusting one’s daily activities and adopting technology and other supports. While some resilience-related research has focused on autistic persons without an intellectual disability, there is limited research on autistic persons with co-occurring intellectual disability. A systematic review of resilience in autism and ID conducted by Clark and Adams (2022) did not yield any studies of participants that had combined ASD+IDD diagnoses; therefore, it is unclear what resilience looks like for an ASD vs ID vs ASD/IDD sample.
Resiliency related factors for families of children with autism cited in the literature include: social/informal supports (Al-Jadiri et al., 2021; Fong et al., 2021), such as family, friends or other parents in the autism community; engaging in problem focused coping strategies (Pepperell et al., 2018; Vernhet et al., 2019); and satisfaction with healthcare providers (Al-Jadiri et al., 2021). A study by Halstead et al. (2018) found resiliency to be protective for maternal well-being when their autistic child has behavioral problems. The recent COVID-19 pandemic has also brought about the need to consider resiliency in the face of a significant change in lifestyle, routine and access to supports (Friesen et al., 2021; Pachner & Aranyi, 2021).
While researchers have begun exploring resiliency and strengths in the autism community, and strengths in the broader Black community in the U.S. are well understood, to our knowledge there has been no intentional effort to identify resiliency factors and related strengths among the Black autism community. Thus, the purpose of this study is to examine study findings on resiliency and strengths in the Black autism community.
Methods
A scoping review was conducted on existing literature specific to resiliency in the Black autism community. A definition of resilience that guides this work is an individual’s ability to experience positive outcomes despite stressors, challenges, and barriers (Walsh, 1998). The authors define resiliency as prevailing when faced with difficult and negative situations, but not related to overcoming autism or disability (Zauszniewski et al., 2010); this distinction is important given the body of autistic voices who have made it clear that their autism is not something to be overcome, but a crucial part of their overall identity. Studies that broadly represented this concept were included in the review. Key factors that informed our investigation of drivers of resilience for the Black autism community included: strengths, cultural strengths, assets, cultural capital and protective factors. In conducting this scoping review on resiliency and strengths of the Black autism community we aimed to 1) identify resiliency factors and related strengths (i.e., cultural assets) that build resilience within the Black autism community, and 2) characterize strengths of the Black autism community (i.e. personal resources, contextual resources, resilience strategies and outcomes.
A literature review search was conducted spanning dates of January 1, 1946 to June 7, 2023 using Covidence. Covidence is a web-based screening/data extraction tool (www.covidence). The search was completed using the following electronic databases: Web of Science, Embase, PsycINFO, Medline and ERIC. Key search terms for each database search were as follows: autis* or asperge* or kanner, black or blacks or afri* or afro* and streng* resilienc* OR cultur* OR coping OR cope. Duplicate articles were removed by Covidence during each database search. Studies that met inclusion criteria included both empirical, qualitative or mixed method peer-reviewed journal articles and dissertations (non-peer reviewed) addressing: a) resiliency among Black populations with autism, Asperger’s syndrome or pervasive developmental disorder; b) strengths of Black families of children with autism, Black autistic persons; and c) strengths and resiliency of the family system or Black community. For cases in which a dissertation was later published in a peer-reviewed journal, we included only the final publication to avoid duplication. Exclusion criteria for the scoping review were as follows: systematic reviews, scoping reviews, studies conducted outside of US, studies specific to the topic but using non-Black samples, and studies on the Black autism community that were not related to resiliency, strengths or cultural assets.
We recognize that dissertation studies are often excluded from reviews due to concerns over methodology and the lack of peer-review. We chose to incorporate these studies because researchers of color (who often lead projects related to these topics) often face systemic barriers, including publication bias, lack of professional support, and difficulties with career advancement (DeRosier et al., 2014; Griffin, 2020) that can cause their contributions to go unpublished (Rouan et al., 2021). For this reason, in addition to the underexplored area of this research topic, we have chosen to include these publications. As such, we affirm that the inclusion of these studies represents a strength, rather than a weakness, and is in line with our overall goal of representing often underrepresented or unheard voices within autism research. Data related to quality appraisal have been reported separately for dissertations and peer-reviewed publications to provide a clear representation of the strengths and weaknesses of both types of studies.
The systematic review of articles for inclusion in the final data extraction was based on the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) statement (Liberati et al., 2009) and at each step two reviewers reached consensus on article inclusion/exclusion when discrepancies arose. Initially, 436 published works were systematically reviewed with a reduction in the number of included articles until the final 28 research papers for data extraction were reached.
Analyses
All team members (with the exception of one who provided assistance at the stage of data extraction based on specific expertise in methods) took part in each stage of the review process including title and abstract screening, full text review, and data extraction. A consensus was established amongst the team for charting/data extraction areas of inquiry. Data extraction (see Table 1) inquiries were as follows: general information (i.e., title, author/year), characteristics (i.e., theoretical framework, methods, aim(s) of study, study design), participants (i.e., number of participants and description), and outcomes (i.e., resiliency or strengths-based factors, summary of resiliency or strengths-based factors). Team members were guided by the first author on a standardized protocol for conducting the data extraction. Pilot testing of two articles was done among team members to ensure standardization of data extraction practices. Two members were assigned to review each article in the areas of aim(s) of the study and outcomes, with consensus reached if any reporting discrepancies were found.
Table 1.
Study Characteristics
| Title | Author/year | Theoretical framework | Methods | Aim of study | Study design | Description of participants |
|---|---|---|---|---|---|---|
|
| ||||||
| “Watch Your Tone”: The Experiences of African American Parents of Students on the Autism Spectrum in Parent-School Partnerships | Brown, I.C., & Mortier, K. (2020). | Communities of practice | Semi-structured interviews | To examine the experiences of AA parents of children on the autism spectrum within their family and communities; examine the experiences and needs of AA families with children on the autism spectrum while navigating school systems. | Qualitative research | 11 African American parent/guardian of a child on the autism spectrum with an IEP or working towards an IEP for the diagnostic criteria for autism. |
| Narratives of single, black mothers using cultural capital to access autism interventions in schools | Morgan, E., & Stahmer, A. C. (2021) | Critical Race Theory Community Cultural Wealth Model | In-depth semi-structured interviews | To examine the types of cultural capital that Black mothers identify as important when advocating for their children; to identify barriers and facilitators to active engagement in educational systems | Qualitative research | 5 single Black mothers of children with ASD |
| A culturally grounded autism parent training program with Black parents | Kaiser, K; Villalobos, ME; Locke, J; Iruka, IU; Proctor, C; Boyd, B. (2022) | Not clearly stated | Parent training program over a three-year period consisting of 20 parents max per cohort. | To describe the implementation of a parent-training program and the related feedback | Qualitative research | 147 Black parents with one Black or biracial child with autism |
| The creator did not give me more than I can handle: Exploring coping in parents of Black autistic children | Lewis, EM; Dababnah, S; Hollie, KR; Kim, I; Wang, Y; Shaia, W. (2022) | Black Family Stress and Coping (BFSC) | The Ways of Coping Questionnaire + semi-structured interviews. | To examine how parents of Black autistic children cope with daily stressors. | Mixed Methods | Twenty-two Black mothers of an autistic child |
| Faith and FACES: Black Parents’ Perceptions of Autism, Faith, and Coping | Pearson, J. N., Stewart-Ginsburg, J. H., Malone, K., Harris, J. R. (2022) | Not clearly stated | Grounded Theory | To explore perceptions of Black parents raising children with autism on religious coping within the context of a parent advocacy intervention |
Qualitative research | 7 Black parents with children with autism |
| Investigating Disparities in the Age of Diagnosis of Autism Spectrum Disorders† | Perryman, T. (2009) | Help-seeking model | Non-experimental descriptive study | To examine the association between help-seeking behaviors and age of autism diagnosis based upon race and cultural differences | Quantitative survey research | 50 African American families and 118 White families with children with autism |
| “They think we don’t have the knowledge:” The Intersection of Autism and Race† | Hetherington, S. (2012) | Feminist disability studies | Qualitative case study | To explore the unique barriers faced by African American mothers of children with autism in negotiating the special education system | Qualitative research | 5 African American mothers who have a school age child with autism |
| An Ethnographic Investigation of African American Mothers of Children with Autism Spectrum Disorders | Townsend, A. (2012) | Ethnography | Ethnographic semi-structured interviews | To describe the shared experiences of African American mothers of children with ASD. | Qualitative research | 14 African American mothers of a child diagnosed with ASD |
| Acknowledging Intersectionality: An Autoethnography of a Black School Counselor Educator and Father of a Student with Autism | Hannon, M. (2018) | Family Life Cycle Theory | Autoethnography | To examine the relationship between the self and the other in advocating for IEP-related education services for a son with autism as a black father. | Qualitative research | 1 black father of a son with autism |
| Caregiver Voices: Cross-Cultural Input on Improving Access to Autism Services | Stahmer, A.C., Vejnoska, S., Iadarola, S., Straiton, D., Segovia, F.R., Luelmo, P., Morgan, E.H., Lee, H.S., Javed, A., Bronstein, B., Hochheimer, S., Cho, E., Aranbarri, A., Mandell, E.M., Smith, T., Kasari, C. (2019). | Not clearly stated | Focus groups and interviews | To assess perceived barriers and facilitators to identifying develsopmental concerns, obtaining an ASD diagnosis, and accessing ASD-related services. | Qualitative research | Caregivers were either parents (50 mothers, 6 fathers) or legal guardians (28 Black caregivers) 55 providers (11 Black providers) |
| Influence of autism on fathering style among Black American fathers: a narrative inquiry | Hannon, M., White, E., & Nadrich, T. (2018). | Family life cycle theory | Narrative inquiry | To explore how autism influences the fathering styles of Black American fathers of children with autism. | Qualitative research | 6 Black fathers of individuals with autism |
| Experiences of African American Mothers of Sons with Autism Spectrum Disorder: Lessons for Improving Service Delivery | Lovelace, T. S., Robertson, R. E., Tamayo, S. (2018) | Grounded theory | Narrative inquiry | To explore the impact of race on the lived experiences of three African American families with boys with ASD | Qualitative research | 3 African American mothers of school-aged boys on the autism spectrum |
| African American families and autism: A phenomenological investigation of the lived experiences of African American parents who care for children with autism spectrum disorder (ASD) † | Julien, S.A. (2014) | Ecocultural theory | Semi-structured interviews | To describe the meaning for African American families of their lived experiences of providing care for their children diagnosed with ASD | Qualitative research | 10 African American parents with children with ASD |
| African American Fathers Raising an Autistic Child† | Burns-Darden, S. (2018) | Bowen’s family systems theory | Semi-structured interviews | To explore the experiences of African American fathers raising an autistic child and their reactions upon receiving a first diagnosis of their child. | Qualitative research | 12 adult African American males with a child diagnosed with ASD |
| African American Mothers of Children with Autism and Their Experiences of Receiving Support: A Generic Qualitative Study† | Burgess, N.D. (2014). | Not clearly stated | Semi-structured interviews | To explore how mothers of African American descent cope with having children with autism. | Qualitative research | 10 African American mothers of children with autism |
| African American Parents’ Experience Accessing Support Services for Their Autistic Child† | Jones, A. (2022) | Behavioral health model and resilience theory | Semi-structured interviews | To explore the experiences of African American parents when accessing and maintaining autism services for their children. | Qualitative research | 10 African American parents of an autistic child |
| Exploring Perceptions of African American and Mixed Race Black Adults Having a Sibling with Autism Spectrum Disorder† | Wells, C. (2022) | Leininger Theory of Culture Care Diversity | Semi-structured interviews | To examine the perspectives of African Americans about their relationship with and perceptions of their ASD sibling | Qualitative research | 8 African American or mixed race adults with siblings with ASD |
| Screening, Diagnosis, and Intervention for Autism: Experiences of Black and Multiracial Families Seeking Care | Weitlauf, A., Miceli, A., Vehorn, A., Dada, Y., Pinnock, T., W. Harris, J., Hine, J., & Warren, Z. (2022). | None reported | Survey with open-ended and fixed response questions | To understand Black and multiracial families experiences with early ASD symptoms; understand families experiences of care providers who were helpful/not helpful; describe family perspectives on how racial background did/did not impact diagnostic processes | Mixed methods | 400 parents of autistic children |
| Parents taking action (PTA) adapted to parents of Black autistic children: Pilot results | Dababnah, S., Kim. I., Magana, S., & Zhu, Y. (2021) | Community-based intervention/peer-to-peer approach | PTA intervention and interviews | To adapt PTA for Black families w/ autistic children as a potential intervention for these families. | Mixed methods convergent study design | 7 parents of Black autistic children |
| Experiences of African American Fathers of Children with Autism Social Supports† | Stephenson, C. (2020) | Social Support Theory | Semi-structured interviews | To understand the experiences of African American fathers of autistic children and the effectiveness of social supports. | Qualitative research | 11 African American fathers of autistic children |
| African American Families on Autism Diagnosis and Treatment: The Influence of Culture | Burkett, K., Morris, E., Manning-Courtney, P., Anthony, J., & Shambley-Ebron, D. (2015) | Culture Care Diversity and Universality theory | In-depth field observations and interviews | To explore the care meanings, practices, expressions and ways of living of urban African American families that influence the health and wellbeing of their children with autism; and the interface with family care and professional care. | Qualitative research | 24 African American families with children with autism |
| “We Had to Keep Pushing”: Caregivers’ Perspectives on Autism Screening and Referral Practices of Black Children in Primary Care | Dababnah, S., Shaia, W.E., Campion, K., & Nichols, H.M. (2018) | Adapted Public Health Critical Race Framework; Grounded theory | Semi-structured individual interviews | To investigate what barriers and facilitators parents and other caregivers of Black children experience regarding ASD screening in primary healthcare settings and subsequent referral to specialty care, such as comprehensive developmental evaluations | Qualitative research | 22 Black female caregivers of children with ASD |
| The Influence of Race and Ethnicity on the Relationship between Family Resilience and Parenting Stress in Caregivers of Children with Autism | Kim, I., Dababnah, S., & Lee, J. (2020) | Walsh Conceptualization of Family Resilience | Quantitative; descriptive | To investigate racial or ethnic differences in the association between family resilience and parenting stress | Quantitative Descriptive; Nonexperimental survey | 1131 parents or guardians of children with autism; Black sample (n = 80) |
| Parent and Professional Experiences Supporting African-American Children with Autism | Pearson, J. N., Meadan, H., Malone, K. M., Martin, B. M. (2020) | Not clearly stated | Semi-structured interviews | To understand the experiences of African-American parents of children with autism and professionals with regards to diagnosis of autism and obtain recommendations from African-American parents of children with autism and professionals with regard to serving the needs of African-American children with autism | Qualitative research | 11 African-American mothers of children with ASD; 9 professionals who taught or provided services for African-American children with ASD |
| Brief Report: Participation of Black and African-American Families in Autism Research | Shaia, W.E., Nichols, H.M., Dababnah, S., Campion, K., & Garbarino, N. (2020). | None specified | Semi-structured interviews | The purpose of this study was to solicit the perspectives of Black families raising children with ASD in order to explore facilitators and barriers to research participation; as well as suggestions to increase their involvement in ASD studies. | Qualitative research | 22 Black families raising children with ASD |
| FACES: An Advocacy Intervention for African American Parents of Children With Autism | Pearson, J., & Meadan, H., 2021 | FACES theory of change; adult learning theory | Six-session, 18-hour parent-training and advocacy program focused on increasing community resources | To measure the effectiveness and social validity (i.e., feasibility and acceptability) of the FACES program among AA parents of children with ASD. | Mixed Methods; Pilot Study using Focus Groups and Pre-/Post survey Design | 10 African American Parents of Children With Autism |
| The Developmental Process of Parent Advocacy for Black Mothers of Children on the Autism Spectrum† | Morgan, E. (2021) | Critical Race Theoretical (CRT) framework | Qualitative interviews + Portraiture | To explore the types of resources (i.e., cultural capital) parent coaches use to advocate for their children with autism and if they promoted the use of similar strategies for families they coached | Qualitative research | 7 Black or African American parents of a child with autism |
| Parenting African American Children With Autism: The Influence of Respect and Faith in Mother, Father, Single-, and Two-Parent Care | Burkett, K., Morris, E., Anthony, J., Shambley-Ebron, D. & Manning-Courtney, P. (2017) | Culture care theory | In-depth qualitative interviews and field notes | To explore the meanings of care and beliefs and practices of African American families with a child with autism living in urban settings | Ethnonursing Qualitative research | 24 African American family members of children with ASD and 28 professionals |
signifies dissertation publications
For our second research question, we adapted the models of resilience-supporting factors (Mansfield et al., 2016; Sanderson & Brewer, 2017; Young et al., 2019) to conceptualize the resilience and strength-based factors described across articles. There were four types of factors described in the articles: (1) personal; (2) contextual; (3) resilience strategies; and (4) outcomes.
Quality Appraisal
We used the Mixed Methods Appraisal Tool (MMAT; Hong et al., 2018) for quality appraisal of the articles. The MMAT was selected due to its use as a critical appraisal tool for qualitative, quantitative, and mixed-methods studies, all of which were assessed for this scoping review. Assessment of each study consisted of five criteria, and two authors marked whether or not each study met criteria by checking one of the following ratings: ‘Yes’, ‘No’, or ‘Can’t tell’. We followed the guidelines of Hong and colleagues (2018) and did not score the criteria, rather we used the criteria to guide our understanding of the strengths and limitations of the quality of these research studies across studies. MMAT rankings were completed by A.D. and D.J. who both have experience with qualitative, quantitative, and mixed methods methodologies. All studies were reviewed based on MMAT criteria and any discrepancies in rankings were resolved among the two rankers. MMAT assessment, and reasons that studies failed to meet these criteria, are reported in Tables 2 and 3.
Table 2.
Results of Quality Assessment using MMAT – Peer Reviewed Publications
| Study Type | Quality Criteria | N studies meeting Criteria | Reasons studies did not meet criteria |
|---|---|---|---|
|
| |||
| Qualitative Studies (n = 14) | Is the qualitative approach appropriate to answer the research question? | 14 | - |
| Are the qualitative data collection methods adequate to address the research question? | 11 | • Study included at least one participant who did not meet the stated inclusion criteria • Study did not provide information regarding collection methods • Methodology not clearly described |
|
| Are the findings adequately derived from the data? | 11 | • Limited text examples to support some themes or findings • Unclear relationship between themes, subthemes, and data • Potential coder bias or positionality not considered |
|
| Is the interpretation of results sufficiently substantiated by data? | 11 | • Interpretations generalizing beyond what can be inferred by the sample • Inferences that aren’t fully supported by the reported data |
|
| Is there coherence between qualitative data sources, collection, analysis and interpretation? | 14 | - | |
|
| |||
| Quantitative studies (n=1) | Is the sampling strategy relevant to address the research question? | 1 | - |
| Is the sample representative of the target population? | 1 | - | |
| Are the measurements appropriate? | 1 | - | |
| Is the risk of nonresponse bias low? | 1 | - | |
| Is the statistical analysis appropriate to the answer to the research question? | 1 | - | |
|
| |||
| Mixed methods studies (n=4) | Is there an adequate rationale for using a mixed methods design to address the research question? | 3 | • No rationale provided for using a MM design for research inquiry |
| Are the different components of the study effectively integrated to answer the research question? | 3 | • Quantitative and qualitative findings not well integrated | |
| Are the outputs of the integration of qualitative and quantitative components adequately interpreted? | 3 | • Quantitative and qualitative findings presented separately | |
| Are divergences and inconsistencies between quantitative and qualitative results adequately addressed? | 4 | - | |
| Do the different components of the study adhere to the quality criteria of each tradition of the methods involved? | 3 | • Unclear psychometric properties of the scale developed in the study | |
Table 3.
Results of Quality Assessment using MMAT – Published Dissertations
| Study Type | Quality Criteria | N studies meeting Criteria | Reasons studies did not meet criteria |
|---|---|---|---|
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| Qualitative Studies (n = 8) | Is the qualitative approach appropriate to answer the research question? | 8 | - |
| Are the qualitative data collection methods adequate to address the research question? | 2 | • Narrow recruitment criteria were not rationalized and limited ability to generalize findings to the broader research questions • Recruitment was part of a broader experimental study that may have impacted results • Data collection was online and measures to confirm autism diagnosis or prevent fraudulent participation were not taken |
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| Are the findings adequately derived from the data? | 6 | • Limited text examples to support some themes or findings • Unclear relationship between themes, subthemes, and data • Potential coder bias or positionality not considered |
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| Is the interpretation of results sufficiently substantiated by data? | 4 | • Interpretations generalizing beyond what can be inferred by the sample • Inferences that aren’t fully supported by the reported data |
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| Is there coherence between qualitative data sources, collection, analysis and interpretation? | 8 | - | |
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| Quantitative studies (n=1) | Is the sampling strategy relevant to address the research question? | 1 | - |
| Is the sample representative of the target population? | 1 | - | |
| Are the measurements appropriate? | 1 | - | |
| Is the risk of nonresponse bias low? | 1 | - | |
| Is the statistical analysis appropriate to the answer to the research question? | 1 | - | |
Results
Our results were based on a literature search that yielded 436 articles at the first stage of the review process, with 315 studies screened for eligibility upon the removal of 121 duplicates. A total of 252 articles were removed during title/abstract screening, with 56 articles reviewed at the stage of full-text review. Twenty-seven studies were removed for reasons including insufficient focus on strengths and resiliency factors, lack of focus on the Black population or an entirely different racial demographic, different study design, and different outcomes that are not part of the inclusion criteria (see Figure 1). Twenty-eight published papers were included in the final review. Due to the novel and underexplored topic of this review, we chose to include dissertations meeting eligibility criteria within our analysis. Nine of the final 28 publications were published dissertations.
Figure 1.
Flow diagram of study selection.
Study characteristics
All studies had a sample of Black2 (i.e., African American) participants with twenty-four of the studies focused only on Black (n=22) or Black and biracial participants (n=2). Four studies had other stratified samples (e.g., white families of autistic children), and two of the studies had an intervention component. The twenty-eight studies reviewed consisted of two (7%) quantitative, twenty-two (79%) qualitative, and four (14%) mixed methods studies (Figure 1). Studies that met inclusion criteria were published between the years of 2009 to 2022. Study characteristics are further described in Table 1.
Review Question 1: what resiliency factors and related strengths (i.e., cultural assets) build resilience within the Black autism community?
The majority of papers discussed resilience and strength-based factors (i.e., cultural assets) in the contexts of either: 1) familial experiences and advocacy for autistic populations; 2) the roles of social, community, and institutional support; and 3) post-ASD diagnosis growth for parents and family members. While a variety of familial experiences were explored within these studies, and different stages along the autism journey were showcased in these studies, there was an overlap in the reporting of resilience-supporting factors across study participants (see Table 4 for a summary of resiliency and strengths-based factors).
Table 4.
Resiliency and Strengths Based Factors and Summary
| Resiliency and Strengths Based Factors | Summary of Resiliency or Strengths Based Factors |
|---|---|
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| |
| Empowering experiences in the school community | Empowering experiences in the school included positive and effective communication, and having a say in the decision-making process. Participants indicated having groups and clubs specific to the culturally unique needs of AAs, meeting socially, and receiving information and resources to improve advocacy skills. |
| Resistance capital; navigational capital; supportive social context | The mothers demonstrated resistance capital by fighting for their child’s access to identification and intervention services. They demonstrated navigational capital by working to figure out how to get the services that they needed. A supportive environment for these mothers consisted of feeling supported by the team of providers working with their child. This supportive social context fostered the mothers’ use of cultural capital (e.g. to advocate for their children’s access to quality services). |
| Advocacy; support | Parents reported feeling empowered by the parent trainings and were better able to advocate for their children. Team building and circle of support exercises were helpful. |
| A range of coping strategies, planful problem-solving, seeking social support, positive reappraisal, and self-care | Planful problem solving involved active efforts to solve problems such as doing “whatever’s necessary” and “something constructive”. Informal and formal supports were mentioned with primary sources of support (e.g. parents of other autistic children, partners, family members, and providers) most frequently mentioned. Positive reappraisal involved the use of positive self-talk and reframing their child’s challenges as strengths. Challenges they faced also helped them gain more patience and appreciation for “what’s important”. Self-care included exercising and listening to music. Some parents endorsed self control as a emotion focused strategy complementary to problem-solving strategies (e.g. to avoid appearing “angry”). Creativity, meditation and spirituality were also used. |
| Intrapersonal and interpersonal coping; communal coping and being accepted. | Participants viewed coping as intrapersonal (e.g. faith and spirituality soundness of mind, wellness) and interpersonal, e.g. (acceptance by) religious congregations by the religious congregation). Communal coping in the form of religous congregating and reliance on group identity was predicated upon the child and family being accepted and supported. |
| Caregiver empowerment; confidence; perseverance | African American caregivers and White caregivers indicated similar responses on the measure of caregiver empowerment. Specifically, the African American and White caregivers reported similar levels of belief in their ability get their children access to the services that they needed. Both groups also noted similar levels of confidence and perserverance as it related to accessing the services their children needed. |
| Resistance; agency and protection of child | Some of the mothers demonstrated resistance by rejecting deficit narratives. Others showed resistance by advocating for their children to receive services and encouraging other caregivers to advocate for their children. The mothers showed agency through their beliefs in their ability to protect their child and the actions they took to prioritze their children’s safety within the educational system. Examples of some of the actions the mothers undertook included learning more about autism and the special education system. |
| Empowerment; collaboration with professionals; leadership and advocacy; implement therapy strategies at home; spiritual-religious beliefs | The mothers demonstrated empowerment through the multiple roles played in their child’s life in order to help meet their child’s needs. For example, they became knowledgeable about autism and the resources available to support their child. They participated, and in many instances, held a leadership role in support groups. They also often advocated for their children. Over half of the mothers also embedded intervention goals and strategies in their everyday lives. Many of the mothers also leaned on their spiritial-religious values to help them cope with the diagnosis, to gain strength, and to give them a positive outlook on life and their child’s disability. |
| Firm advocacy; prior professional experiences of parent(s) | A Black father concerned about and determined to advocate for his Black son’s academic and social trajectory. A Black father who also could balance seeing the strengths and vulnerabilities of his son. |
| Proactive participation; family and community support; provider advocacy and provider partnership | Black families were similar to other cultural groups noting that they used the internet and technology to learn about resources and to gain knowledge that would help in decision-making, that the the support provided by their family assisted them and noted the importance of provider advocacy in helping the families’ access services. Black caregivers were also similar in seemed to rely on hands-on strategies (e.g. , frequent communication, having trusted providers introduce the family to a new service system) and building trust in order to establish a partnership with providers. Black caregivers also noted that parent networks played a significant role, specifically in accessing information. |
| Rewards of seeing child’s development; the development and demonstration of patience; influence of faith on ability to be patient | Rewarding aspects of their fathering experiences include seeing their children experience success and develop an effective communication system. These black fathers noted a capacity to demonstrate more patience in the fathering style compared to before they were fathers of an autistic child; for some their faith had an influence. |
| Persistent advocacy | The mothers advocated for their children multiple times. This persistence in advocating for their children helped them to feel confident, gain knowledge about their rights, and encouraged better collaboration with service providers. |
| Positive mindset; spirituality and faith; social support | Positive mindset; spirituality and faith were internal sources of strength. External sources of strength include familiarity, friends, and community support. |
| Positive engagement with children; task sharing with spouse; optimistic | Positive engagement with children included going to the playground, playing video games (e.g. MindCraft), playing basketball, and going to the movies and church. Video games were particulary noted as a communication tool. Fathers would take the child to appointments to relieve the mother. Fathers also demonsrated optimism feeling that their child is a blessing. |
| Family support; faith/prayer | The mothers of autistic children relied on family support as family members would care for the child when the mother was at work or simply needed a break. Also, the theme of praying to God was evident. Most of the participants explained that in the African American household, it is common for parents to teach their child to pray when they were faced with trials, tribulations and adversities. When one is at a loss and needs support, the thing to do to gain peace, clarity, and strength is to pray. |
| Personal journey of understanding and acceptance; positive perspectives; strong relationships with children | Parents acknowledge challenges they face and at the same time see the bigger picture of the journey being about the family and child. Traits that facilitate recovery and resilience were noted as a strong relationship with their children, cohesion, problem-solving skills, connectedness and communiction. |
| Protector role, tolerance/acceptance, inspiration | The unique bond and positive relationship that siblings have with their brother/sister with ASD was expressed through them taking action to protect their sibling. Acceptance of their sibling’s diagnosis and tolerance allowed for a deeper connection and appreciation for their sibling. Siblings also were inspired by the successes, self-reliance and strength of their sibling despite the challenges that come with autism. |
| Engaging in self-advocacy | Study found that black families (31%) who engaged in self-advocacy reported more positive outcomes for their autistic children. These families felt more empowered when they engaged in self-advocacy. |
| Advocating for their child’s needs and learn more about/aware of autism. | The parents knowledge of autism improved as shown through statistically significant pre-post improvement and substantial expression of knowledge from qualitative interviews. Parents also felt more confident advocating for their child’s needs and accessing resources to help with their advocacy. |
| Dependence on spirituality and wellbeing; trust and confidence in social support; positive relationships with child. | Black caregivers noted being motivated to contribute to ASD research by getting the word out and seeing Black families be a part of research was a source of happiness. Participation in research studies also had an element of advocacy (e.g. getting information about resources for their children or receiving caregiver support).. Having a voice is a way to overcome lack of inclusion in research with research team member having a role in creating a comfortable research environment. |
| Protective stance; promotion of independence; taking action out of love for child; balancing what was best for family; taking action among the Black community | AA families providing protection was essential for the health and well-being of their child. Promoting independence of the child in terms of self-care and other activities of daily living was also protective. Parents being intentional in treating their child as normal as possible was in service to promoting capability and functioned as being preventative against experiencing discrimination faced by AAs. Taking therapeutic action included seeking an accurate diagnosis and attaining services and supports. Families took action out of love for their child to ensure access needed care while balancing the family. They also took action to address lack of acceptance of autism amongst the Black community through challenging and educating others. Family actions began with seeking a diagnosis for their child and engaging in therapies, usually adapting strategies for use in the home setting to reduce barriers and stigmatization. |
| Social support; caregiver persistence | Support (e.g. family, friends) can have a positive influence on caregivers seeking out services including follow-up. AA caregivers demonstrate persistence which helped them secure early intervention or other ASD related services. |
| The effects were larger for AA children with respect to hopeful thinking and family communication having an inverse relationship to parenting stress than white children. | African American families who talk together (family communication) and engage in hopeful thinking experience less parenting stress. |
| Advocacy; community networks; loyalty | Parents noted that they advocated for their children to receive a diagnosis, access to services, and specific goals on the IEP. Community networks are important and are an extension of a form of loyalty within the AA community. Parents noted importance of family and friends as the foundation of their community network and who provide them with encouragement. |
| Motivation to help others learn about ASD; research participation + advocacy; having a voice | Black caregivers noted being motivated to contribute to ASD research by getting the word out and seeing Black families be a part of research was a source of happiness. Participation in research studies also had an element of advocacy (e.g. getting information about resources for their children or receiving caregiver support). Having a voice is a way to overcome lack of inclusion in research with research team member having a role in creating a comfortable research environment. |
| Family empowerment; sense of community | Increased positive perceptions of empowerment and advocacy of the AA parents were the result of the FACES training. Stronger perceptions of empowerment related to dismantling stigma, managing emotions (e.g., fewer feelings of embarrassment), and feeling more confident in their abilities to address their children’s needs. Parents were also equipped with more knowledge and understanding of ASD and education rights, laws, and procedures. |
| Community; support; advocacy; acceptance; generativity | Mothers often noted the importance of the support they received from family members (e.g., their mother) to help overcome hardships. Advocacy was connected to developing relationships and seeking out infomation in order to know how to best support their child. The mothers also expressed acceptance of their role as an advocate and found pride in being an advocate for their child. The mothers were also inspired to support other Black mothers facing similar experiences. |
| Respect from healthcare providers (HCPs); faith in God | HCPs showing respect for their lifeways, including their ability to parent and provide discipline was encouraging for parents and reflective respectful care. Faith has an influence on the positive belief that their child is a blessing (from God). |
All of the articles focused on exploring resiliency factors and related strengths of family members of autistic individuals. Twenty-seven of these articles centered the experiences of Black caregivers (i.e., guardians, parents) of autistic individuals. Eight studies solely collected data from Black female caregivers (e.g., mothers, guardians) of children with autism (Burgess, 2014; Dababnah et al., 2018; Hetherington, 2012; Lewis et al., 2022; Lovelace et al., 2018; Morgan, 2021; Morgan & Stahmer, 2020; Townsend; 2012), one based on a mixed methods inquiry and the remainder based on qualitative inquiry. Four studies specifically focused on Black fathers (Burnes-Darden, 2019; Hannon et al., 2018; Stephenson, 2020); all based on qualitative inquiry. Only one paper was outside the scope of caregivers but also was in the context of the family system focusing on African American or mixed race adults with autistic siblings (Wells, 2022).
Many of the studies captured resiliency/related strengths of family members of autistic people throughout their everyday life experiences (Brown & Mortier, 2021; Burkett et al., 2015; Julien, 2013; Lewis et al., 2022; Lovelace et al., 2018; Shaia et al., 2020; Stephenson, 2020; Townsend, 2012). However, some studies highlighted resiliency/related strengths during specific stages of an autistic individual’s life and provided context to their role as a caregiver or family member. For example, six studies focused on resiliency during the initial diagnostic process and the continuum of caregivers then attempting to access services for their autistic child (Dababnah et al., 2018; Jones et al., 2021; Pearson et al., 2020; Perryman, 2009; Stahmer et al., 2019; Weitlauf et al., 2023). For four of the studies, the focus was specifically on caregivers’ experiences navigating the school system (Brown & Mortier, 2021; Hannon, 2017; Hetherington, 2012; Morgan & Stahmer, 2020).
Resiliency Factors and Associated Strengths
Familial Experiences and Advocacy for Autistic Populations
A common resiliency strategy found in the review was family members’ advocacy for their Black autistic children. Three studies focused specifically on empowering Black parents by training them to build their self-advocacy skills (Dababnah et al., 2023; Kaiser et al., 2022, Pearson & Meadan, 2021). Two of these studies were mixed methods studies (Dababnah et al., 2023; Pearson & Meadan et al., 2021) and the third was a qualitative study (Kaiser et al.,2022). Similarly, many caregivers noted the importance of taking action and being proactive about helping their child get the support that they needed. Burkett and colleagues (2015) stated that parents described themselves as taking action to make sure that their child had the right diagnosis and had access to appropriate services. They also noted that parents took action by treating their child like a “typical” child to prevent discrimination. Wells (2022) found that siblings also took action to protect their autistic sibling.
The Roles of Social, Community, and Institutional Support
Several studies (n = 11) highlighted the importance of support. For some caregivers there was a marked reliance on support, while for others support was viewed as a blessing to have but not necessarily a requirement. The most common forms of contextual support were through family and friend networks. In a qualitative study by Morgan (2021), mothers indicated that the support provided by their family members (e.g., their mothers) was significant in helping them through difficult times. Kim and colleagues (2020) found that participants who communicated with their family members indicated that they felt less stress. Mothers in Burgess’ (2014) study also stated that they appreciated having family to support caregiving tasks.
Another source of support cited in some of the studies was peer support. For example, Kaiser and colleagues (2022) explained that parents found team-building exercises to be helpful. These team building exercises included opportunities for parents to share their experiences and challenges with other parents who participated in the training. Black caregivers also seemed to appreciate parent networks, especially as it pertained to accessing information (Stahmer et al., 2019). Morgan (2021) found that many of the parents were motivated to provide support to other mothers of autistic children. Relatedly, a few articles noted the importance of social support in the form of trusted professionals. For example, in Stahmer et al., (2019) Black caregivers noted the importance of trusted providers to refer them to other service systems and the importance of building trust through partnerships with service providers. In addition, Morgan and Stahmer (2021) found that mothers felt value in being supported by the provider who delivered services to their child. As for institutional support, the healthcare system was seldomly mentioned (n = 2). These studies mentioned support as key in the healthcare context (Burkett et al., 2017; Morgan & Stahmer, 2021). One study highlighted the respect of healthcare providers being a source of encouragement and as a positive influence on parenting (Burkett et al., 2017).
The Influence of Resiliency on the Lived Experiences of the Black Autism community
Post-ASD Diagnosis Growth for Parents and Family Members
Participation in interventions that included an advocacy component was shown to greatly improve Black parents’ knowledge of autism which, in turn, influenced their perceptions of autism. That is, findings from three studies reflected a positive growth of Black parents, such that many parents demonstrated acceptance and overall post-diagnosis growth (e.g. a change in reactions) as compared to when their child first received their ASD diagnosis (Burkett et al., 2015; Hetherington, 2012; Wells, 2022). The priority of providing protection to autistic family members was clearly stated in these studies. Parents also grew in their response to advocating for their child within the school system, as noted in some of the studies (Brown & Mortier, 2021; Pearson et al., 2020; Hetherington, 2012). For example, parents demonstrated their agency and advocacy in ensuring that their children received a diagnosis, access to services, and that specific goals be achieved on their Individualized Education Program (IEP) (Pearson et al., 2020), as well as negotiating with the special education system so that their child’s needs were prioritized and met (Hetherington, 2012). Parents also noted a need to advocate for their children’s safety in the educational system (Brown & Mortier, 2021).
Review question 2: what specific domains of resiliency/strengths (e.g. personal resources, contextual resources, resilience strategies and outcomes) are represented in the Black autism community?
In this review a total of thirteen studies described personal resources within the Black autism community (i.e., spirituality, parental knowledge, and self-efficacy, empowerment, and having agency). As detailed in Table 5, other resources included resiliency strategies, contextual support, and outcomes. Nineteen articles described resiliency strategies that the Black autism community have utilized, such as advocacy and taking action, connectedness and optimism, and communication and team building. Eleven articles described contextual support as another resource, and examples include family, friend and peer support, support from health professionals, obtaining resources from the internet, and doing leisure activities. Lastly, two articles primarily described outcomes as it relates to empowerment, advocacy and gaining confidence.
Table 5.
Domains of Resiliency/Strengths
| Domains | Examples | References |
|---|---|---|
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| ||
| Personal | Spirituality | Burgess, 2014; Burkett et al., 2017; Hannon et al., 2018; Julien, 2014; Pearson et al., 2022; Townsend, 2012 |
| Personal | Parental knowledge | Hetherington, 2012; Towsend, 2012; Stahmer et al., 2019; Dababnah, 2021; Pearson & Meadan, 2021 |
| Personal | Self-efficacy/ empowerment/ agency | Hetherington, 2012; Kaiser, 2022; Perryman, 2009; Shai, 2020 |
| Resiliency strategies | Advocacy and taking action | Burkett, 2015; Towsend, 2012; Wells, 2022; Hannon et al., 2018; Hetherington, 2012; Jones, 2022; Kaiser et al., 2022; Lewis et al., 2022; Morgan, 2021; Morgan & Stahmer, 2021; Pearson et al., 2020; Pearson et al., 2021; Weitlauf et al., 2022 |
| Resiliency strategies | Protective factors (e.g., reflection/meaning-making, optimism, acceptance, coping, connectedness) | Dababnah et al., 2018; Lovelace et al., 2018; Perryman, 2009; Hannon et al., 2018; Kim et al., 2020; Morgan, 2021; Burkett et al., 2015; Pearson et al. 2022; Jones, 2022; Wells, 2022 |
| Resiliency strategies | Communication and team building | Brown & Mortier, 2020; Jones, 2022; Kaiser, 2022 |
| Contextual support | Family, friend, and peer support (other caregivers) | Burgess, 2014; Dababnah et al., 2018; Kim et al., 2020, Pearson et al., 2020; Morgan, 2021; Brown & Mortier, 2020; Kaiser et al., 2022; Stahmer et al., 2019 |
| Contextual support | Medical support | Burkett et al., 2017; Morgan & Stahmer, 2021; Stahmer et al., 2019 |
| Contextual support | Internet and technology | Stahmer et al., 2019 |
| Contextual support | Leisure activities | Burns-Darden, 2018 |
| Outcomes | Empowerment | Kaiser et al., 2022; Pearson & Meadan, 2021 |
| Outcomes | Advocacy | Kaiser et al., 2022 |
| Outcomes | Confidence | Pearson & Meadan, 2021 |
Discussion
This is the first scoping review to examine resiliency and supporting factors in the Black autism community, including autistic persons, caregivers, and other family members. This review identifies an important gap in the literature while highlighting studies that have contributed to a growing understanding of the resilience of an often-neglected population within the Black population- the Black autism community. Most papers identified in this review discussed resilience and strength-based factors that include resources and support within the Black community. This is an important step in identifying and highlighting strength-based research of Black families. For example, the results demonstrated that advocacy is a common strategy among Black caregivers of autistic children and support is vital. Thus, aggregating characteristics of coping for Black families with children allows for a better understanding of the multitude of factors that could increase their resiliency and sense of overall well-being.
Research on Black caregivers of autistic children highlights stages of advocacy development. Whether families were learning how to advocate, increasing their ability to advocate through these experiences, or stating the importance of advocating, advocacy was commonly mentioned in many of the studies (see Morgan & Stahmer, 2021; Pearson et al., 2022; Morgan, 2021). The experience of having to constantly be prepared to advocate in a nation with tendencies to dismiss the concerns and support the needs of Black autistic children could contribute to higher levels of fatigue and burnout among Black caregivers (Bekhet, 2016; Williams, 2019). While Onovbiona and colleagues (2023) findings indicate that racial barriers are positively associated with Black caregiver stress, the potential impact of Black caregivers having to advocate on their stress levels is largely understudied. At this time, an appraisal of the state of resilience in Black caregivers of autistic children or other related developmental disabilities (e.g., intellectual disabilities, learning disabilities) cannot be made due to this population being underrepresented in resilience studies. Additionally, the stages of a child’s development that present the greatest challenge and contribute to a diminished ability for Black caregivers and the family system to be at a baseline level of optimal resilience in the face of disadvantaging circumstances is unknown.
Results from this study also demonstrate the importance of informal supports (friends and family) for bolstering the resilience of Black families of autistic children. Having support was found to be instrumental in neutralizing negativity, stress, and isolation (Lewis et al., 2022). While having a reliable support network has been a staple for supporting resilience among communities of color, Black families of autistic children have a particular appreciation when allistic peers can stand by their side and offer a helping hand to prevent feeling overwhelmed and exhausted (Crompton et al., 2023). This finding is consistent with the cultural asset of familial capital in the face of experiencing racism, as highlighted in the R3ISE framework (Iruka et al., 2022). The cultural assets of resistance (Hetherington, 2012; Morgan & Stahmer, 2021) and spiritual capital were also clearly demonstrated in many of the studies (Hannon et al., 2018; Julien, 2013; Townsend, 2012).
Spirituality was a pathway for some families to make peace with their child’s diagnosis and expand their horizon about existential questions they may have about life (e.g., what the future holds, what life is supposed to be like for me and my child; Hatfield et al., 2017). Spirituality and religiosity practices of the Black population are useful for dealing with a range of difficult situations (Dill, 2017; Johnson & Carter, 2020); however, churches may be ill-equipped for neurodiverse communities (Carter, 2021; Pearson et al., 2022). To strengthen the capacity of churches, particularly Black churches, it is important to understand the needs of Black families with autistic children as this could enhance the resilience of such church-going families. For families of other faiths, it is also important that faith leaders understand the importance of the faith community being equipped to serve as a source of safety and support for Black families of children with developmental conditions, including autism.
The majority of resilience- promoting factors reviewed and based on research with Black parents of autistic children paralleled those of the broader Black population including the Black Church, having an extended family and/or fictive kin, and a shared understanding of strategies to offset societal racism (e.g., collective practices and community-based advocacy; Brown, 2008; Denby, 2018; Allen, 2023; Dale & Safren, 2018). A particular strategy specific to the Black population that has been protective for centuries is the passing down of customs to stay safe in the face of state sanctioned violence and institutional racism (Anderson et al., 2022; Miller & Vittrup, 2020). For Black parents of autistic children, whose condition is inherently based on socio-communication differences, there are complexities to how these parents navigate society while aiming to protect their vulnerable child from harm. Study findings did not specifically speak to the processes of parents for strengthening the safety of their children but there were brief mentions of the importance of protecting their child in a few of the qualitative studies reviewed (Burkett et al., 2015; Hetherington, 2012; Wells, 2022). For example, in the study by Burkett and colleagues (2015), families were intentionally in health care settings to be watchful, with an understanding that they cannot give the benefit of the doubt that providers will provide equitable, non-biased care. Since our initial review search, Onovbiona and colleagues (2024) have published an article that includes strategies that caregivers use regarding safety practices with police officers. Examples of these strategies include placing autism bumper stickers on their cars and meeting with the police (Onovbiona et al., 2024). While safety within interactions with law enforcement is a concern for parents of Black autistic children and adults (Davenport et al., 2024; Onovbiona et al., 2024); currently, strategies for alleviating the burden of fear of harm toward their child in society (e.g., law enforcement) is largely a segregated issue of the Black developmental disability/autism community although state-sanctioned violence is an issue that transcends both race and disability (Frederick & Shifrer, 2019).
To summarize, when pooled, the resilience/strengths-based factors of the Black parents/caregivers of children with autism fell largely into categories of: (1) advocacy/taking action on behalf of their child, (2) having informal supports, and (3) acts of contemplation (e.g., deep reflection, prayer, acceptance). When examined against autism and resilience-related factors in studies largely consisting of majority-white samples, it appears that Black parents/caregivers paralleled white families in including the use of a combination of problem-focused and emotion-focused coping strategies, drawing on social support to increase coping, and embracing spirituality (Bekhet et al., 2012; Ghanouni & Hood, 2021; Kotera et al., 2021). It is speculated from this review, however, that Black parents must exert more of their time and energy to problem-focused coping due to racism and having multiply marginalized, intersectional identities. Furthermore, while experiences of Black and white parents/caregivers of children with autism may overlap in some ways (Iadarola et al., 2019), intersectionality shows up early for Black parents of children with disabilities (Straiton & Sridhar, 2022; Davis et al., 2022). As a result, the ways that these parents/caregivers make adaptations to cope with the confluence of race and disability could be expressed in different adaptive strengths (Lewis, et al., 2022) that warrants further exploration. Some existing studies have also focused on family resilience (Gardiner et al., 2019; Kim, 2020) rather than a focus being solely on parent/caregivers to which our review did not yield any findings specific to family resilience.
It is critical to highlight that there are no studies to date that center the strengths of Black autistic persons; the Black autistic voice is silenced. In research, we have not heard from this group regarding what their strengths are and what contributes to Black autistic joy. The present research on resilience in autistic persons is made up of largely white samples and many of the studies do not appear to disaggregate findings based on race. The intersectional experiences of Black autistic persons at this time are not known and are a facet of the scholarly neglect of this population has been noted by scholars and first-person accounts from Black autistic persons in recent years (Giwa Onaiwu, 2020; Jones et al., 2020; Malone et al., 2022). It is important to situate how strengths such as attention-to-detail, nonverbal convergent and divergent creative thinking, logical thinking, verbal fluency and decision-making (for persons with average intellectual functioning; Devenish et al., 2022; St. John et al., 2022; Taylor et al., 2023) hold up for Black autistic persons, or if there are differences, reasons for these differences. The majority of studies to date on autistic advantages are qualitative in nature, however these studies have not focused on Black individuals. A recent well-powered study (n= 276) of autistic and non-autistic samples in the United Kingdom showed similar strengths between the two groups. To date, there are no studies that represent Black autistic persons and their strengths from a racialized or disability-specific frame. Further, the field of autism specific to the study of resilience is shifting in its focus from being solely on caregivers to a steady growing body of autism publications focused on autistic persons specifically. It is important that Black autistic persons’ experiences of resilience and unique barriers that present for the possibility for resilience are discovered.
Finally, we would like to highlight the important role of formal supports (e.g., professionals and other persons financially compensated for their time) to strengthen the resolve and resilience of the Black autism community. Factors external to a person that promote or diminish resilience can be systemic or institutional. Structural racism thwarts the potential of a Black person being fully realized in the US and can make a Black person with a disability at even greater risk of marginalization. As a result, supports that accommodate the strengths of Black autistic persons are very important. Access to high-quality supports and services is a relevant social justice issue that collides with identification and leveraging of the strengths of autistic persons and has a particular relevance for Black autistic persons. As disparities in access to culturally congruent care (Liu et al., 2023) are addressed, the strengths of Black autistic persons should be integrated into models of care, including treatment and assessment (La Roche et al., 2018). Parents of Black autistic children and autistic persons should be able to resonate with structural-level factors that promote their resilience such as provider-driven systemic advocacy (Simpson & Chan, 2021) that is collaborative and creates conditions of safety. These types of improvements in care would increase opportunities and the possibility of successful outcomes for Black autistic persons and their families throughout the lifespan.
Limitations
The lack of the Black autistic voice in the reviewed studies is one major limitation of this review. Therefore, strengths and factors that bolster resilience in persons with lived experience of autism are not represented. Many of the studies also did not explicitly focus on the topic of resilience and in the review process resiliency-associated factors were drawn from the findings of studies. Qualitative studies were also overrepresented in the review despite the inclusion criteria being quantitative, mixed methods, or qualitative studies. Due to a lack of quantitative studies included in the review, it is unclear which measures best capture resilience and the nuances of resilience that would map unto examination of resilience in a dually (or multiply) marginalized population. In lieu of smaller sample sizes inherent in the majority of the studies (qualitative-based) we cannot generalize the findings to the broader Black autism community with utmost confidence, however we feel this is an important start for building knowledge in this area. Finally, nine of the twenty-eight studies included in this review were published dissertations, which had not been peer-reviewed. While the quality of these studies had been reported separately from peer-reviewed publications, it is possible that the lack of peer-review may have contributed to many of the limitations reported for these studies.
MMAT assessment of study quality indicated that the quality of qualitative and mixed-methods studies was often limited by methodological constraints. In particular, many studies were impacted by recruitment limitations and interpretations of results extending beyond the available data. In many cases, qualitative studies were conducted virtually with minimal efforts to confirm diagnosis, a method that has generated concerns related to a lack of data integrity (Pellicano et al., 2023). Other studies were often recruited for as part of a broader intervention study, which often contributed to excessive limitations on inclusion criteria, as well as potential selection bias in participants. While these limitations were more common among dissertations, they were also found among many peer-reviewed publications, highlighting broader constraints related to research involving the Black autism community. Another limitation of the dissertations including in this study is them not going through a peer-review process.
Indeed, Black autistic persons and their families have been historically underrepresented within autism research (Malone et al., 2022). Coupled with diagnostic delays and systemic barriers to participation, these factors may contribute to the Black autism community being a difficult-to-recruit population that often necessitates broader or more flexible recruitment efforts (Onovbiona et al., 2024; Tafolla et al., 2023; Shaia et al., 2020). Recruitment constraints may be further imposed by funding limitations faced by researchers conducting more novel, behavior-centered work, including many students and earlier career researchers. Efforts to support research related to the Black autism community, including greater funding for community-based research, participant travel reimbursement, and greater funding and collaboration opportunities for Black scholars investigating this area (Jones & Mandell, 2020) may help to increase the quality of research related to the Black autism community. However, despite these weaknesses few quality concerns were related to research questions or analysis.
Together, the results of the MMAT suggest that improvements in study methodology may contribute to the output of more high-quality research related to resiliency in the Black autism community. While there are critiques of resilience research (i.e., that resilience is the individual’s responsibility or that it is an individual (personality) trait (Suslovic & Lett, 2024)), we acknowledge that resisting oppression and seeking to overcome adversity is a hallmark of marginalized groups in the United States. A limitation of society, including nationally and globally, is structural/systemic change not occurring at a fast enough pace that would dictate that marginalized groups (e.g., persons of colors, persons with disabilities, persons with these intersectional identities and others with marginalized identities) do not have to overcome unfair odds.
Future research
The current review gives direction for future research with the Black autism community. First, given that no studies have examined resilience or strengths in Black autistic persons, it is crucial that resilience promoting factors are intentionally studied in this population. Future studies should be qualitative, quantitative and incorporate blending the two techniques for deeper understanding of this unique population. Intersectional approaches to researching this population should not be shied away from in researching this population and are critical for understanding the complexity of living as a Black autistic person and ways that they exist in the face of marginalization that comes with having intersecting identities that experience societal oppression. Relatedly, researchers that conduct quantitative studies should practice care when integrating measures on resilience, including taking steps to validate the measures with Black autistic samples and adapting measures for their experiences as deemed necessary. Researchers should also take into account structural factors that impact resilience for multiply disadvantaged populations. When engaging in qualitative inquiry, researchers should also be holistic in their attempts to inquire on resilience and strengths, making sure to consider contextual factors such as culture and identity development.
Because Black children are at greater risk of receiving later autism diagnoses (Constantino et al., 2020), it is important that the experiences of these Black families are better understood in order to support both the autistic child and the resilience of the entire family. Family resilience in terms of looking at the entire family system is also an important factor for studying in the Black autism community. It is also critical that the resilience of Black fathers and Black mothers are better understood in research, taking into account the gendered experience of parenting a Black child with autism/a developmental disability.
Research on resilience in the Black autistic population should span across the ages and stages including in childhood, adolescence, young adulthood and beyond. The study of resilience in the autism population is a nascent area and the diversity of populations including racially and ethnically minoritized populations should be studied with particular care and attention. The field of autism is also catching up with the study of the adult population, and resiliency factors in the Black autistic adult population should not be sidelined in this developing area of research. It also important that the research on strengths in the Black autistic person be inclusive of individuals with intellectual disability and also populations with other intersectional identities (e.g., gender-diverse, first/second generation immigrants). Studies should be conducted to understand how best to accommodate the strengths of Black autistic persons to counter ableism that intersects with racism in institutions such as schools, employment settings and other sectors of society.
Practice implications
The results of this scoping review highlight that, amid various social challenges that the Black autism community encounters and experiences, there are copious amounts of resiliency and supporting factors (strengths) that serve as a protective buffer. Thus, it is critical that clinicians who work with Black autism communities approach their work from a strengths-based practice by highlighting the various resiliency factors and strengths among this population, including spirituality/religiosity, advocacy strategies and informal supports. Prior studies on strengths-based approaches (i.e., encouraging individuals and communities to focus on their abilities and strengths) in practice suggest that this approach can influence positive outcomes and contribute to greater life satisfaction (Xie, 2013). These findings also have practical implications for educators who work with Black families of autistic children. Many of the articles reviewed discussed advocacy strategies used by Black parents when navigating educational settings. It is important that educators find ways to accommodate these families as they combat several forms of racism, including institutional and systemic, alongside ableism. School-based professionals must strive to ensure the safety and wellbeing of Black children with disabilities in the school setting by being more inclusive, supportive, and empathetic; mindful of their own implicit biases; and intentional about supporting families through the IEP process and policies.
Conclusion
The field of autism continues to be at a crossroads for advancing research and representing all persons who have a diagnosis of autism in a fair and equitable manner. Knowledge of resilience in Black parents/caregivers of autistic children is less understood and factors that promote and protect the resilience of Black autistic persons is largely unknown. This scoping review is a beginning to a conversation that must continue to be had and advanced through research that is ultimately translated to improve the lives of Black autistic persons and their families. The field cannot continue to miss the opportunity to promote resilience in the lives of Black and all racially and ethnically minoritized autistic persons and their families.
Acknowledgement
We would like to acknowledge that all authors are members of the Black Empowerment in AutisM (BEAM) network including the support and inspiration provided by the broader BEAM network. The BEAM Network was established in 2022 to foster inclusivity in autism research by uniting Black scholars across disciplines to address racial disparities impacting Black autistic individuals and their families. This research was supported the National Institutes of Health’s Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD), grant 5T32HD094687
Footnotes
In this paper we use autism community to represent autistic people and non-autistic persons including parents, families, and siblings of autistic persons.
We acknowledge that the term Black is not necessarily a term that all persons of the African diaspora subscribe to and in some of the studies African American was the racial/ethnic term used to describe the sample. Therefore Black and African American are used throughout the remainder of the paper commensurate with the descriptor used by the authors of each specific study.
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