Caregivers find that raising autistic children has its joys and challenges. Caregivers described positive experiences raising an autistic child, such as reexamining their values and belief systems, developing a stronger appreciation of life, and recognizing their strength and resilience (Meleady et al., 2020). Caregiver challenges are often attributed to insufficient services and supports rather than the autism diagnosis itself (Meleady et al., 2020; Wallace-Watkin et al., 2023; Wagner et al., 2022). While these joys and challenges span across race and ethnicity, some families raising autistic children face additional challenges.

A large body of research has called attention to the additional barriers Black families experience when accessing autism diagnoses and autism-related services. Disparities in autism diagnoses across cultural backgrounds have narrowed, but as Kasambira Fannin et al. (2024) noted, this does not mean all families have equal access to diagnoses and services. On average, Black caregivers wait significantly longer between their initial mention of a developmental concern about their child to healthcare professionals before receiving an autism diagnosis compared to white parents (Constantino et al., 2020). These disparities continue post-diagnosis, as Black families are subject to racially biased actions by education and medical professionals (Dababnah et al., 2021; Dababnah et al., 2018; Kasambira Fannin et al., 2024; Pearson et al., 2020; Stahmer et al., 2019; Stanley et al., 2015). For example, Black families raising autistic children relayed experiences of racial prejudice and stereotypes from autism service providers based on their race (Pearson et al., 2020a, b). Other Black caregivers conveyed concerns that their child’s intersecting Black and autistic identities could lead to additional difficulties, including challenging encounters with law enforcement who may not recognize autism and resort to violence against their child (Dababnah et al., 2021). In their scoping review, Rivera-Figureoa et al. (2022) identified dual information disparities: healthcare providers held misconceptions about autism in Black children, and, perhaps as a result, Black caregivers had less access to autism-related information.

Black families access autism-related services less frequently than white families, particularly when the autism services are outside the school building (Bilaver et al., 2021; Pearson et al., 2020b). Oftentimes, community-based autism organizations that are separate from educational or medical institutions or agencies offer more accessible autism services for Black families, who may distrust medical or educational institutions due to past experiences (Morgan et al., 2023; Ocasio-Stoutenburg, 2021). For example, the majority of studies involving Black families raising autistic children were conducted in community based settings, speaking to the importance of community and social ties for Black families raising autistic children (Rivera-Figureoa et al., 2022). Black families who used autism services more often reported higher satisfaction with the services, which was an association not observed for white families (Fisher & Lynch, 2024). These disparities are neither new (e.g., Mandell & Salzer, 2007) nor being rectified, as Black families (along with Latinx and Asian families) are rarely a focus of research outside of studies exploring autism prevalence (Steinbrenner et al., 2022). This dearth of research means little is known about the specific support needs of Black families raising autistic children. Understanding these support needs can better prepare professionals to support Black families accessing services. Therefore, the purpose of this study was to explore the support needs of Black families raising autistic children as evidenced by communication patterns in a community-based statewide autism organization. Two research questions (RQ) guided our study: (1) What are the autism-related support needs of Black families raising autistic children; and (2) How do familial demographics influence these support needs?

Method

Given the underrepresentation of Black families in autism research (e.g., Steinbrenner et al., 2022), in this study we aimed to center the support needs of Black families by focusing exclusively on their experiences accessing community-based services. We used a quantitative content analysis (Coe & Scacco, 2017) to answer our research questions. We analyzed secondary deidentified logged entries of phone call communications provided by a community-based autism organization in one southeastern state in the United States. Approximately 22% of the state’s residents were Black or African American (U.S. Census Bureau, 2023). The statewide nonprofit organization provided direct support to autistic persons and their families in group settings (e.g., support groups, workshops) and individual settings (e.g., Family Peer Advocate, employment support). We analyzed 1,460 communication entries that took place between July 2018 and July 2021. The initial sample included 19,620 entries. We removed 10,951 entries (55.8%) where race/ethnicity data were not available and 7,209 entries (36.7%) where the race of the contact person and person needing assistance was listed as something other than Black or African American. Our final sample comprised 1,460 entries (16.8% of the total entries), and included 1,448 entries with Black caregivers and 12 entries with self-advocates. The communication logs did not include a family identifier, so families may have been repeated across entries. We also recognized that other factors, such as shame or guilt, could impact caregivers’ requests and frequencies may undercount perceived support needs (Dababnah et al., 2018; Pearson & Meadan, 2018). To control for these threats, we explored trends within the data itself and avoided comparisons between races.

The staff member who completed the call recorded the details from the call using an online form immediately after the call ended. These entries were stored in an online database and later deidentified for our analysis. Within the form, staff members logged: (a) who they communicated with (denoted as the “contact person”; e.g., parent, self-advocate); (b) the race, sex (i.e., female, male), and location (i.e., city, county) of the contact person; (c) the race, age, and sex of the autistic person the contact person was calling about; (d) the diagnostic status of the autistic person (e.g., diagnosed with autism, dual diagnosis); and (e) what the contact person requested assistance with (e.g., bullying, health insurance questions).

We imported the database into Statistical Package for Social Sciences (SPSS) Version 27 for analysis. We used measures of frequency to answer RQ 1, and a Pearson chi-square test of independence to answer RQ 2. We analyzed the three service needs that were reported in at least 20% of the communication logs: (a) family or individual supports (e.g., implementing home interventions; finding respite care); (b) kindergarten through 12th grade school-related supports (e.g., communicating with teachers; understanding rights in the school system); and (c) behavioral support (e.g., creating a visual schedule; responding to overstimulation). We explored the relationship between the frequency of these support requests and three demographic variables: (a) rurality, (b) age of the referenced autistic person, and (c) sex of the referenced autistic person. First, we coded the county in which the contact person was located as either: (a) urban (> 750 people per square mile), (b) suburban/regional (250–750 people per square mile), (c) or rural (< 250 people per square mile). Black families raising autistic children often experienced geographic barriers to accessing services, particularly in rural areas (e.g., Pearson et al., 2024; Stanley, 2015). Therefore, we wanted to examine differences in the types of services requested based on the rurality of the county. Next, we organized the age of the referenced autistic person in four categories (i.e., < 5 years old, 5–12 years old, 13–18 years old, > 18 years old). We chose this variable as Black families expressed differing autism support needs as their children aged (e.g., Pearson et al., 2020a, b). Last, we examined differences based on the reported sex of the autistic person referenced in the contact entry, as autistic persons assigned female at birth tend to be diagnosed later than autistic persons assigned male at birth (Harrop et al., 2024). These variables were independent, categorical, and had more than five occurrences in each category, thus meeting assumptions for a Pearson Chi-Square test of independence (McHugh, 2013). We selected a Chi-Square to ascertain if the distributions of these categorical variables were significantly different based on rurality, gender, and age (Turhan, 2020).

Results

What Are the Autism Support Needs of Black Families?

Staff members communicated with mothers (79.2%), fathers (5.1%), custodial grandparents (6.7%), guardians and foster parents (1.4%), other family members (6.7%), and self-advocates (0.9%). Contact persons most often referenced autistic males in their support requests (83.6%). Eleven of the 12 contacts with self-advocates identified as male (0.08% of all entries). The age of the Black autistic family member was only reported for 271 entries (18.6%). Age ranges included < 5 years old (12.6% of reported entries), 5–12 years old (35.3%), 13–18 years old (36.4%), and > 19 years old (15.6%). None of the entries involving self-advocates provided an age. Most family members had been diagnosed with autism, and only autism (71.1%), though others had multiple diagnoses (17.7%) or had not been diagnosed yet (4.8%). Staff communicated with family members and self-advocates in 128 cities residing across 65% of the counties in the state. Families were located in urban (54.3%), suburban (23.9%), and rural counties (19.4%). The location of 102 entries (7.0%) was unknown or outside of the focal state.

We report a frequency count of the needs with which Black families and self-advocates requested assistance in Table 1. Multiple needs were reported in 827 (56.6%) of the entries. Families most often requested: (a) family or individual supports (61.7%); (b) school-related supports (36%); (c) behavioral supports (28.9%); and (d) health concerns (8.8%). Black autistic self-advocates most often requested: (a) family or individual supports (91.7%); (b) behavioral supports (58.3%); (c) health concerns (25.0%); and (d) financial concerns (25.0%).

Table 1 Reported needs
Full size table

How Do Familial Demographics Influence These Support Needs?

We found significant interactions between the type of county (i.e., urban, suburban, rural) and the type of assistance requested. Families who lived in rural counties were significantly more likely to request school-related help (48.4% of rural entries) than families in urban (28.6% of urban entries) or suburban counties (29.2% of suburban entries); χ2 = 39.220, p < .001. Families in rural counties were significantly more likely to request assistance with behavioral supports (41.0% of rural entries) than families in urban (28.8% of urban entries) or suburban counties (22.9% of suburban entries); χ2 = 25.220; p < .001. Families had a similar likelihood of requesting family or individual support in urban (62.1% of urban entries), suburban (57.9% of suburban entries), and rural counties (64.7% of rural entries); χ2 = 3.225; p = .199.

We also found significant interactions between the age of the autistic person referenced in the contact entry and the type of assistance requested. Families were more likely to request family or individual supports when the referenced autistic person was 13–18 years old (75.5% of 13–18 year old entries) than when they were < 5 years old (52.9% of < 5 years old entries), 5–12 years old (52.6% of 5–12 years old entries), or > 18 years old (51% of > 18 years old entries); χ2 = 12.690; p = .005. Unsurprisingly, families were more likely to request school-related help when the referenced autistic person was 5–12 years old (the typical range for elementary and middle school; 38.9% of 5–12 years old entries) or 13–18 years old (the typical range for middle and high school; 30.6% of 13–18 years old entries) than when they were < 5 years old (2.9% of < 5 years old entries) or > 18 years old (9.5% of > 18 years old entries); χ2 = 24.147; p < .001. Families were also more likely to request behavioral supports when the referenced autistic person was 13–18 years old (57.1% of entries) than when they were < 5 years old (14.7% of entries), 5–12 years old (27.4% of entries), or > 18 years old (21.4% of entries); χ2 = 32.762; p < .001.

Last, we found significant interaction between the sex of the referenced autistic person and the type of assistance requested. Families were slightly more likely to request family or individual supports when the referenced autistic person was identified as male (63.4% of male entries) versus female (55.0% of female entries); χ2 = 25.220; p < .001. Families were far more likely to request assistance with behavioral supports when the referenced autistic person was male (31.1% of male entries) than female (18.8% of female entries); χ2 = 14.937; p < .001. Families were just as likely to request school-related support when the referenced autistic person was female (35.0% of female entries) or male (32.2% of male entries); χ2 = 0.708; p = .400.

Discussion

The purpose of this content analysis was to identify the needs of Black families who received support from a community-based autism organization in one southeastern state. Our dataset provides an initial glance at communication patterns with Black families in an autism support organization. Caregivers (specifically mothers) tended to communicate with organization staff far more than self-advocates, and these communications most often related to school-age autistic children (i.e., 5–18 years old). Needs varied widely, but the most common were related to school, behavior, and family/home supports. Notably, Black families were only 16.8% of the total entries, reflecting the still minoritized position Black families exhibit within autism support organizations. The prevalence of autism is nearly identical across racial identities (Maenner et al., 2020), but this dataset suggests that Black families participate in only a fraction of communication instances with community organizations, even in a state where nearly a quarter of the residents are Black or African American (U.S. Census Bureau, 2023).

Over half of the communication entries came from families located in urban counties, with the remaining entries divided between suburban/regional and rural counties, respectively. Our analyses suggested that families in rural counties were more likely to request both school-related help and behavior supports, but about as likely to request family or individual supports as families from urban and suburban counties. This could imply that Black families seek more support identifying and/or navigating school and behavior support systems in rural areas, or as Bilaver et al. (2021) theorized, it is indicative of the shortage of community-based services in rural areas. Rural areas can impose additional unique barriers to Black families seeking autism-related supports, including both fewer service agencies available and fewer culturally competent practitioners (Authors, 2023; Smith et al., 2020; Stanley, 2015). Regardless of the reason, our analysis suggests Black families may indeed demonstrate distinct autism-related support needs depending on the community in which they reside.

We also observed differences in service request frequency based on the age and sex of the autistic person referenced in each log. Families tended to request more support for autistic adolescents who were between the ages of 13 and 18 years. Autism-related family services often focus on supporting autistic children and their caregivers during early childhood and/or early in the diagnosis journey, leaving a relative dearth or diminishment of resources for older adolescents and their caregivers or longitudinal services that continue long after a diagnosis (Malone et al., 2022; Srinivasan et al., 2021). Our analyses suggest the perceived need for behavior, school, home, and family supports tailored to autistic adolescents and their caregivers.

Simultaneously, family members more often requested family or individual supports and behavioral supports when their autistic family member was male. Our study indicated differences in the sexed presentation of autism may result in differences in support needs or requests. This may align with historic sexed distribution of autism diagnoses (Harrop et al., 2024). Another explanation is that autistic males tend to exhibit more readily observable social and communication difficulties, as well as more pronounced restricted interests and repetitive behaviors (Green et al., 2019; Harrop et al., 2024). These can manifest as behaviors families feel particularly ill-equipped to handle alone, prompting them to seek professional support. Furthermore, as autistic females are more likely to be undiagnosed, misdiagnosed, or diagnosed later in life (Harrop et al., 2024; Loomes et al., 2017; Lehnhardt et al., 2016), their families may not associate their family member’s needs with autism, and thus not consider seeking support from autism-focused organizations. This could result in autistic females not accessing crucial support and resources specifically designed to address their needs. Understanding how sex influences autism presentation is crucial for addressing the support needs of Black families.

Limitations and Suggestions for Research

This study provides initial insight into the trends of support needs experienced by Black caregivers of autistic children. We recognize several limitations to the study, which limit the generalizability of our findings. First, we explored communication logs from one community-based autism organization in the southeastern United States, and used the data the organization provided following their data collection practices. Limited datasets are an inherent factor when working with community organizations, who often prioritize in-the-moment support over ensuring complete recordkeeping (Minkler, 2005). The dataset did not link family identifiers to encounter data; therefore, we were unable to determine the specific needs of individual families or identify the number of entries from the same family. The data did not specify if and to what extent the organization provided the supports requested, nor the families’ perception of the supports provided. The data set did not include race/ethnicity information for every entry, and few logs contained the age of the Black autistic family member. Caregivers may have been reluctant to name race or ethnicity for fear of discrimination (see Stahmer et al., 2019), or community-based providers may have felt it was an inappropriate time to ask caregivers to give their name race or age, particularly in times of crisis or frustration (Pearson et al., 2024). We also excluded several support request variables (e.g., financial need, bullying) from our inferential analysis because they did not have a high enough frequency to yield meaningful results. There could be undetected geographical differences in legal needs or differences in bullying support requests based on age.

While some of these limitations could be resolved with a larger dataset, they are also characteristic of the small representation of Black families within the dataset we analyzed. Black autistic persons and families are still minoritized not only within service delivery, but autism research more broadly (Kasambira Fannin et al., 2024; Malone et al., 2022; Steinbrenner et al., 2022). Further research is needed to understand trends of support requests based on characteristics of Black families, such as differences in support needs between families with one autistic family member and multiple autistic family members. Autism researchers and support organizations must actively seek to involve Black families and consider systemic efforts to correct gaps in autism service participation (Steinbrenner et al., 2022). These efforts might include community-based psychoeducational interventions that enhance advocacy and empowerment among Black families. One such intervention for Black families is FACES (Fostering, Advocacy, Communication, Empowerment, and Support; Pearson & Meadan, 2021; Pearson et al., 2020a, b). Exposing Black caregivers supporting autistic family members to community-based autism services through interventions such as FACES may increase Black families’ knowledge of community-based services and strengthen their capacity to support their autistic loved ones. When community-based disability organizations collect comprehensive demographic data from the families they serve, they can be a key conduit for connecting Black families to additional supports such as FACES.

Although the intentional focus of this study was to focus exclusively on the experiences of Black families, future research should also explore differences in community-based service experiences among Black families as compared to caregivers from other cultural backgrounds. These findings might provide richer implications for community-based autism organizations about how families are served across racial and ethnic backgrounds.

Implications for Practice

Indeed, Black family members raising autistic children have a more positive experience when their needs are met (Pearson & Meadan, 2018; Pearson et al., 2020b). Therefore, we recommend that autism service organizations collect and track the race, ethnicity, or cultural background of the families with whom they interact, and use these data to evaluate if the cultural representation within their services mirrors that of their community. We also encourage autism organizations to consider how geography, sex (and gender identity), and age may intersect with race to propel or affect the support needs of Black families. Understanding these nuanced experiences for families of color seeking community-based services can help refine and inform targeted interventions that may address many of the barriers Black autistic individuals and their families face.