Black children with autism spectrum disorder (ASD) are diagnosed later than their White peers, are more likely to be misdiagnosed, and are less likely to receive early intervention services or a developmental evaluation by three years old. Using a grounded theory approach, we solicited the perspectives of parents and other primary caregivers of Black children with ASD on barriers and facilitators to ASD screening and referrals in primary care. A socioeconomically diverse sample of 22 female caregivers participated. Four themes emerged. First, while some caregivers noted their child's primary healthcare providers facilitated a timely ASD diagnosis, other participants reported these providers ignored early concerns about child developmental delays. Second, many participants felt racial bias negatively impacted caregiver-primary healthcare provider interactions. Third, legal/custodial issues slowed caregivers' abilities to follow up on referrals from their primary healthcare providers. Finally, caregivers described denial, shame, and stigma relating to ASD in the Black community as possible factors for delayed follow up to referrals. Differences based on socioeconomic status are discussed. Efforts to improve family-centered, culturally relevant care for all Black caregivers raising children with or at-risk for ASD are needed, particularly for those families experiencing the multiple effects of poverty.
Autism spectrum disorder (ASD) is a complex neurodevelopmental disability (American Psychiatric Association, 2013) affecting an estimated 1 in 59 children in the United States (Baio et al., 2018). Without known biomarkers, diagnosis relies entirely on professional observation and parent report of child behaviors (American Psychiatric Association, 2013). Primary healthcare providers, including pediatricians, nurse practitioners, and other medical professionals, play a critical role in facilitating timely ASD diagnoses and access to early intervention (Pinto-Martin et al., 2008). Once these providers identify a potential developmental delay, through parent report, clinical observation, or a standardized screening tool, the providers should refer children to specialists for a comprehensive developmental evaluation. Examples of specialists include early intervention professionals, psychologists with ASD training, and developmental pediatricians. Specialty services can vary from focused ASD programs to general early intervention services for children with developmental delays.
ASD can be reliably diagnosed by two years of age (Stone et al., 1999), and screening measures can identify children at risk for ASD by 12 months of age (Turner-Brown, Baranek, Reznick, Watson, & Crais, 2013). Timely diagnoses allow children to reap significant benefits from early intervention services (Christensen et al., 2016; Zuckerman, Lindly, & Sinche, 2015). Yet, while parents often bring their children's delays to primary healthcare providers' attention before the age of two (Chawarska et al., 2007); on average U.S. children are not diagnosed until they are over the age of four (Baio, et al., 2018).
National initiatives, such as the American Academy of Pediatrics' Autism A.L.A.R.M. (Johnson, Myers, & American Academy of Pediatrics Council on Children with Disabilities, 2007) and the Centers for Disease Control and Prevention's (CDC) “Learn the Signs. Act Early” campaign (Daniel, Prue, Taylor, Thomas & Scales, 2009) have attempted to raise awareness of the importance of early detection and intervention. For example, primary healthcare providers are encouraged to listen to caregivers' concerns and to refer children with suspected developmental delays to early intervention services or the local school system, even if not yet diagnosed. Part C early intervention services for children younger than three years old are available in every U.S. state through the Individuals with Disabilities Education Act. These services include a comprehensive developmental evaluation. Children not yet diagnosed with ASD or other developmental disabilities are eligible for Part C services, as long as they meet criteria for a developmental delay.
The CDC recently reported the prevalence of ASD among Black and African-American1 children continues to be lower than the ASD prevalence among White children, although the gap has narrowed compared to previous years (Baio et al., 2018). Black and White parents raise developmental concerns with their healthcare providers when their children are at similar ages (Jang, Matson, Cervantes, & Konst, 2014). Yet, compared to White children, Black children are diagnosed at later ages (Mandell, Listerud, Levy, & Pinto-Martin, 2002; Mandell et al., 2009), are more likely to be misdiagnosed (Mandell, Ittenbach, Levy, & Pinto-Martin, 2007), and are less likely to receive a developmental evaluation before age three (Christensen et al., 2016). In addition, the number of visits for Black children to receive an ASD diagnosis is on average three times more than for White children, with a longer period between initial provider contact and diagnosis (Mandell et al., 2002). Further, Black children are more likely to be diagnosed with more severe forms of ASD, suggesting underdiagnosis of children with milder forms (Jarquin, Wiggins, Schieve, & Van Naarden-Braun, 2011). Accordingly, studies have found Black children eligible for public (Part C) early intervention services were five times less likely to receive such services, compared to White children (Feinberg, Silverstein, Donahue, & Bliss, 2011); and, were underrepresented in ASD early intervention research (Dababnah & Parish, 2015).
A recent study offered an alternate perspective on past findings regarding ASD diagnostic disparities (Emerson, Morrell, & Neece, 2016). This research found that while Black children were diagnosed earlier than White children, having a consistent source of healthcare was associated with a later diagnosis for Black children, and an earlier diagnosis for White children. These findings suggest, despite potential improvements in primary healthcare screening and referral practices and having a consistent source of care, healthcare providers may not screen Black children for ASD and/or refer them to developmental specialists at the same rate as other children. Emerson and colleagues (2016) also discussed potential racial differences in parents and other primary caregivers following up on their healthcare providers' referrals to ASD specialists, which may be due to socioeconomic barriers or cultural beliefs.
Several studies have documented that, even when controlling for socioeconomic status, racial disparities in ASD diagnoses and services persist (Feinberg et al., 2011; Jarquin et al., 2011; Mandell et al., 2007). Nonetheless, few studies have investigated possible causes for these disparities. Recently, public health researchers have noted that existing theoretical frameworks were not designed to effectively investigate how structural racism may contribute to health disparities (Ford & Airhihenbuwa, 2010). Thus, Ford and Airhihenbuwa (2010) developed the Public Health Critical Race Framework (PHCRF), which incorporates a traditional behavioral model of healthcare utilization (Andersen, 1995), with both socioecological concepts (McLeroy, Bibeau, Steckler, & Glanz, 1988) and critical race theory (Valdes, Culp, & Harris, 2002). Andersen's (1995) healthcare utilization model is situated within an external environment, which includes the healthcare system and other environmental characteristics. The healthcare utilization model posits predisposing factors (e.g., race, age), enabling factors (which include individual, provider, and community characteristics), and need (both actual and perceived) all influence one's use of healthcare services, and ultimately, health outcomes (Andersen, 1995). The PHCRF challenges “race” as a factor that simply predisposes individuals to particularly health outcomes (Ford & Airhihenbuwa, 2010). Rather, it reframes the race-related predisposing factor as racism, which, along with structural racism in the external environment, create inequitable health outcomes for people of color.
While the PHCRF was originally applied to research exploring barriers to HIV testing among Black Americans, this model can potentially be adapted to understand ASD diagnostic disparities among Black children (see Figure 1). Enabling factors include community-specific cultural factors that can influence timely ASD diagnosis and treatment, including stigmatization of disabilities and increased reliance on kinship support (Burkett, Morris, Manning-Courtney, Anthony, & Shambley-Ebron, 2015). The PHCRF also considers income as an enabling factor. The poverty rate for Black Americans is the highest of all racial groups (22% in 2016; Semega, Fontenot, & Kollar, 2017) and poverty is an established risk factor for a missed ASD diagnosis (Daniels & Mandell, 2014). Potential healthcare provider-related enabling factors contributing to ASD racial disparities include inadequate professional training and provider bias (Gibson, 2007; Mandell et al., 2002); distrust of clinical care (Burkett et al., 2015); and, strained partnerships between primary care healthcare providers and Black families raising children with ASD (Magaña, Parish, & Son, 2015; Montes & Halterman, 2011; Pearson & Meadan, 2018; Zuckerman et al., 2015).
In total, the emerging research on racial disparities in ASD diagnosis has suggested there are several types of barriers to timely diagnoses and early intervention, including provider-related factors (e.g., insufficient training); stigma or other cultural issues; and, socioeconomic reasons. Healthcare provider-related enabling factors are considered to be more malleable to change, compared to environmental factors (Andersen, 1995), and can thus be potential targets for interventions aimed at reducing ASD diagnostic disparities. Such interventions must be informed by a better understanding of the enabling factors impacting ASD screening and referral practices. Primary healthcare providers are on the frontlines in screening and referring children in need of ASD diagnostic evaluations (Pinto-Martin et al., 2008), and patient-provider communication is central to the delivery of high-quality healthcare (Stewart, 1995). Thus, the current study explored the following questions:
What barriers and facilitators do 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?
Are there socioeconomic differences in primary caregiver-reported experiences?
We utilized a grounded theory approach to investigate primary caregivers' perspectives of ASD screening and referral practices in primary healthcare settings. Qualitative methods are particularly appropriate when the extant research base is weak and not inclusive of key stakeholders' perspectives (Sofaer, 1999). We conducted semi-structured individual interviews, which allowed us to ask participants a set of questions based on the past literature, while offering flexibility to participants to provide information not contained in the questions. The University of Maryland Baltimore Institutional Review Board reviewed the research protocol. All participants received information on their rights as human subjects before consenting to join the study.
This research was conducted in Baltimore, Maryland, where the majority population is Black/African-American (U.S. Census Bureau, 2015). The city is highly segregated along racial lines (Logan & Stults, 2011). Baltimore's poverty rate is 24.2% (U.S. Census Bureau, 2014). Approximately 60% of Baltimore residents live in areas where at least 20% of the population is below the federal poverty line (Maryland Department of Legislative Services, 2016).
We distributed recruitment flyers in English through clinics, community-based organizations, family support groups, and social media. Participants were eligible to participate in the study if they were (a) a primary caregiver (e.g., mother, father, grandparent, aunt) of a child 18 years or younger with ASD; (b) a Baltimore City/County resident; and, (c) self-identified as Black or indicated their child was Black. We did not independently verify child ASD diagnoses, as parent report is generally accurate (Daniels et al., 2012). We also did not restrict our study to young children, as research has found no evidence caregivers are inaccurate in their recall of first developmental concerns (Hus, Taylor, & Lord, 2011). Participants received $25 and light refreshments in appreciation of their time.
We interviewed 22 female caregivers, although the study was not restricted to women (see Table 1). While caregivers of any race were eligible to participate if they identified their child was Black, nearly all of the caregivers identified themselves as Black (n = 20; 91%). Income was evenly distributed in our sample. Over a quarter of participants (27%) reported household incomes less than $25,000 per year, and an additional 18% had incomes less than $50,000 annually. Approximately one-third of the participants reported household incomes over $50,000 and less than $100,000, while 23% reported incomes over $100,000 annually. Similarly, nearly half of the participants (46%) reported education completion at or before high school graduation, while 50% had college or post-graduate degrees. Six caregivers (27%) described professional experiences with ASD outside of caring for their children, including roles in special education and childcare.
Three (14%) participants were raising multiple children with ASD; thus, caregivers discussed their experiences concerning 25 children. All of the children were Black. The majority of caregivers reported their children had limited verbal language skills (n = 20; 80%). On average, caregivers reported concerns about their child's developmental progress around two years of age. About one-third (n = 9) of the 25 children received a diagnosis prior to three years of age. Child age at diagnosis averaged around four years, and ranged up to nine years old. Nevertheless, over half of caregivers reported that their child with ASD received early intervention services (n = 15, 60%); primarily through local Part C services (n = 14, 56%). Additionally, many stated that their child received services prior to confirming a diagnosis (n = 13, 52%).
Data Collection Procedures
The second author, a social worker with doctoral-level training in qualitative methods, conducted and audio-recorded the individual interviews at locations convenient to participants (e.g., caregiver's home), and maintained field notes from each interview. At the beginning of each meeting, the second author disclosed she is a Black caregiver of a child with ASD and indicated her willingness to discuss her own experiences following the interview. Before the interview began, each participant completed a background questionnaire, with information including the child's diagnosis, age of first developmental concern, and family structure.
The interview guide was comprised of ten questions and probes related to the research questions and relevant literature described in the introduction, and is available upon request from the first author. We split the guide into three sections exploring caregivers' experiences (a) obtaining the ASD diagnosis, (b) acquiring ASD services, and, (c) utilizing ASD services and collaborating with ASD service providers. The current paper focuses on results from the first section of our interview guide, which elicited participants' perspectives on their interactions with primary healthcare providers prior to obtaining a formal ASD diagnosis. We did not conduct cognitive interviews of, or otherwise formally pilot, our interview guide. However, consistent with the grounded theory approach (see Data Analysis section for more information), we conducted data analyses concurrently with data collection. This method allowed us to revise the interview guide to reflect emerging themes and add probes if necessary. We added two probes to the interview guide as a result of this process. Despite our discussion with participants during the consent process that our primary interest was the experiences of Black and African-American families, we recognized after the first three interviews that caregivers did not always directly discuss issues regarding race during the interview. Thus, we added a probe to explicitly ask participants about this question of interest to our study. Second, a theme began to emerge regarding participants' decision to join the research study. Thus, we added a probe to ensure we questioned future respondents on this issue.
Interviews, which were all conducted in English, averaged an hour in length. After completing each interview, the second author provided participants with an information sheet listing contact information for local ASD treatment and support services. If participants desired, the second author provided more details about these local services, as well as some information about her own experiences raising a child with ASD. The first author, an Arab American social worker with doctoral-level training, met with the second author following each interview to debrief interviews and preliminary analyses. During these meetings, we reflected on our positionality with respect to the interview participants, and how our past experiences could influence our understanding of emerging themes. For example, we had higher income and education levels than some of the participants. Particularly in these cases, we spent time exploring how our interactions with the participants might have been different had we been from the same socioeconomic group. We also reflected on the potential impact of the second author disclosing her own child's ASD diagnosis, and how that might have influenced participants' willingness to share their own experiences.
We used descriptive statistics in SPSS (IBM Corp, 2017) to summarize the background questionnaire. After the audio-recorded interviews were professionally transcribed, we analyzed interview transcriptions and field notes using grounded theory, a systematic process generating themes to understand a particular phenomenon (Strauss & Corbin, 1990). To further ensure quality, the third author, a White master's level social worker, reviewed interview transcripts for accuracy against the audio-recordings, before importing transcripts into NVivo11 (QSR International, 2015).
The first and third authors began the analysis by independently open coding words and short phrases in the transcripts and field notes, using NVivo11 (QSR International, 2015). Open coding is an established analytic method used in studies guided by grounded theory methodology, whereby responses are compared across participants and conceptual labels are defined in an iterative process (Corbin & Strauss, 1990). We used open codes and the interview guide to develop a preliminary codebook, which was refined as we inspected the data multiple times. Each coder maintained memos to log decisions throughout the analytic process.
Next, we critically examined the codebook to categorize codes into subcategories (axial coding). Throughout this process, we aimed to identify common themes shared by participants and participant responses that did not fit these themes (i.e., discomfirmatory responses). We used demographic information to investigate whether certain themes differed between subgroups. In particular, we explored differences in themes across socioeconomic strata (educational background and household income), to address our second research question.
As noted in the Data Collection Procedures section, we used analyses from completed interviews to inform future interviews. Further, our concurrent data collection and analyses allowed us to monitor when we had reached theoretical saturation. While Creswell (1998) recommended 20–30 participants for a study using grounded theory, there is little evidence for a set number of interviews needed to reach saturation (Guest, Bunce, & Johnson, 2006). Thus, we determined we had reached saturation when we not only began to understand some of the complexity within the themes themselves, but also how these themes connected to one another.
The first and third authors completed all data analyses. As noted above, both of these authors are social workers, and identify as Arab American and White American, respectively. We used several methods to improve the trustworthiness of our findings. First, in addition to the post-interview meetings between the first and second authors, the first and third authors met regularly with the second author to discuss emerging themes and all authors' positionality with respect to data collection and analyses. Second, we reviewed preliminary themes with a peer who was not part of the research team. This peer identified as Black and had experience in developmental disability policy and practice. Third, we actively sought responses that did not fit emerging themes (negative case analysis). Fourth, we compared our findings with past research to examine areas of overlap and divergence. Lastly, we maintained memos of our decision-making to create an audit trail of our analyses.
Our themes are situated within the PHCRF, shown in Figure 1. Additionally, we have listed selected characteristics of each participant in Table 2. With the exception of three caregivers (two who directly contacted early intervention services when concerned; one who did not have custody of her child pre-diagnosis), all participants described their experiences interacting with primary healthcare providers when their children first showed signs of developmental delays. The two caregivers who sought early intervention services directly, without their primary healthcare providers' involvement, were both professionals in early childhood and special education.
To address our first research question, we identified four broad themes describing caregiver-reported barriers and facilitators to ASD screening and referral practices in primary healthcare settings (see Table 3). To address the second research question, we detailed our findings regarding socioeconomic (household income and/or educational background) or other differences within each of the themes described below.
Theme 1: Primary Healthcare Providers' Attention to Caregiver Concerns
Primary healthcare providers' responses to caregiver concerns about developmental delays emerged as both a barrier and a facilitator to ASD screening in primary care and referral to further developmental evaluations. Although the majority of caregivers reported their child had received early intervention services, this occurred through two separate pathways. In the first pathway, participants reported their primary healthcare providers listened to their concerns and paid close attention to their needs. These providers referred families to early intervention services for developmental evaluations when either the caregiver or provider was first concerned. For example, one mother with a college degree (P11) noted her child was meeting milestones, but the mother felt “just little things were different about [child].” The mother reported her pediatrician told her, “Get out of here. Get out of here! Take [child] to [local specialty ASD clinic].” All of the children whose caregivers reported their primary healthcare providers listened to their concerns were diagnosed with ASD by four years old or younger, and many before three years old. One participant (P5), a mother with a high school education, discussed how, despite hearing concerns from daycare teachers, she was reluctant to follow-up until her child's pediatric office referred her to early intervention services, saying, “I was uncomfortable still, but it made me feel better that it was his nurse practitioner that said it's time to do something about this.”
The remaining caregivers reported that their primary healthcare providers did not seem to take their initial concerns seriously and did not provide immediate referrals for ASD screening services. One caregiver had concerns beginning when her child was three years old; the remainder expressed concerns from as early as a few months of age, to 2.5 years old. These participants described a second pathway to obtaining help for their children, which involved directly seeking early intervention services or persistence in asking for referrals from what P18, a mother with a high school degree, regarded as “nonchalant” primary healthcare providers. In a few instances, participants felt their providers did not offer a referral for an ASD evaluation because their child was a twin and/or premature, and thus developmental delays were expected. For example, one mother with a high school degree (P24), had concerns about her child's development by six months of age. She said by two years of age, “[Child] was already lining up toys or whatever, and I expressed that there and the doctor just kept saying, ‘No, he's too young. He doesn't show signs of autism.'” This mother, partly due to her child's other healthcare needs, did not question her primary healthcare provider's assessment regarding ASD. Her child was not diagnosed until about seven years old.
For others, the rationale for their primary healthcare providers' reluctance to provide a referral was unclear, which generally made their interactions with these providers frustrating. One mother (P1), a college graduate, described when her son's speech regressed between her 12- and 18-month well-baby check-ups:
I remember telling [pediatrician] that [child] is not saying any words. The pediatrician said, “Well, some kids, it takes some time. Some kids, might be until two to speak.” …[T]here was a point where [child] just stopped [speaking]. The foods he liked, he wasn't eating anymore…. I kept going to the pediatrician. “Something's not right. Why is he not speaking?” and [pediatrician] kept coming up with all these excuses…We gave it a few months, still nothing. I was like, “I'm very, very concerned.” I didn't know what was going on at all. But, all I knew was he's not talking and children are supposed to be meeting these milestones and he's not. We had to keep pushing.
In this case, the child was eventually diagnosed at age three after the mother persisted in identifying help for her child and contacted early intervention services directly. A few other caregivers, several of whom had prior professional experience in special education or ASD-specific services, described similar situations in which they directly sought early intervention or school-based services without their provider's referral. However, for nearly all of the caregivers who reported their providers were resistant to listening to their concerns, their children were diagnosed with ASD between the ages of four to eight years old.
When we looked at potential socioeconomic differences between caregivers who did and did not receive initial referrals from their primary healthcare providers, there was no discernible pattern of differences. In fact, we found that caregivers who reported their providers dismissed their concerns came from all income and education levels. However, there were observable differences within the subgroup who persisted in obtaining early intervention services, despite their initial experiences with their primary healthcare providers. Overwhelmingly, these caregivers had college or advanced degrees; or, household incomes greater than $100,000.
Theme 2: Perceived Racism and Poor Caregiver-Provider Interactions
The majority of caregivers reported unease in their interactions with their child's primary healthcare providers, which some perceived as racism. Other participants were unsure if poor caregiver-provider interactions were related to participants' neighborhood or socioeconomic status. One mother (P17) with a high school degree reflected on an interaction she had with a White parent whose provider had referred the White parent to an early intervention service: “My wheels are turning, and….initially my thought was, ‘Okay, she's White, I'm Black, maybe that's the reason I didn't get [the referral]. Then I said, ‘No, I don't think that's it. She doesn't have the same provider I have, she is still in [a different area of Baltimore].'” Other caregivers referred to racially segregated, low-income areas of Baltimore, with significant stressors such as violence and substandard housing, as potentially playing a role in how their primary healthcare providers perceived these caregivers and their families.
On the other hand, several caregivers discussed specific instances when they perceived racism led to their primary healthcare providers to make negative assumptions about them or their families. Participants reported these assumptions disrupted the caregiver-provider partnership, creating a barrier to ASD screening. For example, one mother (P16), a college graduate, described interactions with her primary healthcare provider, where she felt the provider doubted her knowledge about ASD and made assumptions about her income and family structure:
You assume because I'm Black… that I might not be as smart. So, I surprise you when I give you all the information. Maybe I was taking it the wrong way….I would get this whole lip service with the doctor, “Well, you can't do this with Medicaid.” I said, “I don't even have Medicaid, I have private insurance.”…There are assumptions like…I'm just this person that has multiple kids. This is a Black woman. If you see my three kids, you assume I don't have a husband.
Another mother (P25), who had a graduate degree, had a similar reaction from her primary healthcare providers when she came “knowledge heavy” [demonstrated a high level of knowledge], saying “I feel like I've shut it down because I'm not who [the providers] think I am.” However, she noted, “But I have had [Black] friends that have not had the same experience, and have felt that discrimination…That's very unfortunate, but I'm hoping to just be a part of that change.” Additional suggestions for change related to providers' perceptions of caregivers were echoed by another mother (P3), who also had a graduate degree. She particularly emphasized the importance of healthcare providers not overloading caregivers with information, saying:
[W]hen [providers] come into your space, or you come into theirs, just knowing that because I may not look the same as you, I may even on a bad day I may look like I don't have it all together, but don't make the assumption….Also everybody's different on the amount of information they're ready to receive, so just know that if you find out other ways to provide the information. Maybe it may not be giving it all to me right there, maybe say, “Can I get your email address?” or, “I can mail it out to you?” Sometimes an abundance of information is not good at one time for everybody, because everybody's at a different spot.
When looking at socioeconomic differences, we did not find any trends in participants who reported racism possibly influenced their interactions with their child's primary healthcare provider. However, among those caregivers who connected specific examples of providers' incorrect assumptions with their race, nearly all were highly educated and/or had high incomes.
Theme 3: Stigma in the Black Community
Many caregivers identified ASD stigma within the Black community, which made caregivers reluctant to follow up on, or even acknowledge, early developmental delays expressed by their primary healthcare providers or others. Several participants asserted that denial or shame related to having a child with special needs is prevalent in the Black community, which reduced awareness of ASD. Some caregivers mentioned they only found out children of family members or friends had special needs after the caregiver's own child was diagnosed with ASD. One mother (P16) with a college education said:
…Other Black parents that have kids with special needs, I think there are a lot in denial…I think mental illness is something you just don't talk about. Technically autism isn't a mental illness, it's a developmental disorder, but you kind of just keep them on the side. A lot of people come up to me like, “I knew nothing about autism.” I have a cousin that's autistic, but they don't really talk about him because they leave him in the house. I normally take [child] out with me.…People see there is a child that has autism, but he doesn't have to be acting erratic.
Another mother (P26) with a graduate degree asserted denial and the fear of “labeling” a child with special needs might delay some parents from seeking assistance when healthcare providers or others expressed concerns about their child's development. Nonetheless, this mother described how she ignored others' denials of her concerns, saying:
We [the Black community] don't follow our gut sometimes. We listen. My mother apologized to me. [She had said], “Oh, they're preemies, they're twins, they're boys.” [I said], “Mm-hmm [affirmative]. I hear you,” as we're going to [local clinic]. We have a hard time with the label.…You see him toe-walking and no eye contact and, “Oh, he just needs a little bit of speech.” No. He needs a little bit more than that.
Like this caregiver, other participants noted their family members, most commonly the children's fathers, were resistant to the “autism” label. One mother (P5) with a high school education said, “[Child's] father actually just told me, a month or so ago, that he's not fully comfortable with [child's diagnosis]. He doesn't really know what it is. He doesn't want anyone to judge his son.” Others mentioned grandmothers or older family members insisted prayer or discipline, rather than seeking a developmental evaluation, would address children's challenging behaviors.
On the other hand, several caregivers recalled times in which their family or friends pushed the caregivers to attend to concerns about ASD, despite the stigma. In particular, these participants noted older family members and trusted friends shared information on ASD and typical child development to encourage caregivers to seek developmental evaluations for their children. Caregivers used this information to share concerns with their child's primary healthcare provider, or to directly seek early intervention services.
We did not identify any themes based on ASD-related stigma within certain socioeconomic categories. Rather, participants across income and educational levels reported stigma as a barrier to Black families attending to concerns about delayed child development; and, described family members and friends both as potential barriers and facilitators to overcoming stigma in order to follow up on developmental concerns.
Theme 4: Legal and Custodial Issues
Changes and disruptions in caregiving and custodial arrangements created a barrier to following up on ASD screening and their primary healthcare providers' referrals to developmental evaluations for some caregivers, delaying their child's ASD diagnosis. Some caregivers were not their child's biological parent (e.g., grandparent), and discussed legal challenges that prevented them from making medical and treatment decisions on the child's behalf for developmental concerns. However, legal and custodial issues also arose for the biological mothers in our sample. For example, one participant (P10), a mother with no high school degree, expressed general distrust of providers due to negative experiences with the child welfare system. This lack of trust seemed to influence her willingness to follow up on her own and her child's primary healthcare provider's concerns about her child's development as early as two years old. Thus, she explained why her son was not diagnosed until nearly seven years old:
My [other] son passed away. [Child Protective Services] took [child later diagnosed with ASD] from me that night. He was gone for like seven months. Once I got him back, I didn't take him nowhere. I didn't want nobody in it. Once he started his new school and being around older kids, and still seeing a difference between him and the other kids, then that's when I wanted to get the diagnosis.
Another mother (P27), whose education was not reported, stated an informal caregiving arrangement due to her incarceration contributed to her son's delayed diagnosis. She noticed developmental delays around three years old, but then:
I got a little minor misdemeanor that sat me in jail [for two years]. The person that I left the guardianship to was the wrong person…[Child] was about six years old when I got out and got [children] together for school, missed all their shots….That's when [child] was diagnosed [with ASD].
Although legal or custodial issues were not exclusive to participants with low incomes and/or limited education, the majority of caregivers who noted these types of issues reported household incomes of $25,000 or less, and high school education or below. While not directly related to their primary healthcare providers, some participants who endorsed this theme acknowledged poverty-related stressors (e.g., substandard housing) exacerbated their legal or custodial challenges, and further contributed to delays in following up on child developmental concerns.
Our research collected the perspectives of a socioeconomically diverse, urban sample of parents and other primary caregivers of Black children with ASD. We have situated our findings within the Public Health Critical Race Framework (Figure 1). Within this framework, we identified several barriers and facilitators related to provider, community, and individual enabling factors, which ultimately influence ASD screening, referral to specialty services, and caregiver follow up (Table 3). While our focus was on enabling factors, we note these processes occur within a larger environmental context. In the current study, caregivers resided in an urban area with high levels of racial segregation and concentrated poverty. While environmental characteristics are not as malleable as provider-related enabling factors (Andersen, 1995), they are nonetheless important to recognize as potential drivers to the racial disparities in ASD diagnoses.
Healthcare providers' attention to caregiver concerns has already been recognized as a critical facilitator to timely ASD diagnoses, with ongoing national efforts to raise providers' awareness of the accuracy of caregivers' early developmental concerns (Johnson et al., 2007). Our study findings suggest some progress has been made to take caregivers' early developmental concerns seriously, with some participants reporting their primary healthcare providers referred children to early intervention services when developmental delays were first identified. Furthermore, over half of the caregivers reported accessing early intervention services before their child was diagnosed with ASD, primarily through Part C programs. It is possible there is growing awareness that public early intervention services are available for young children with developmental delays. Clearly, more research is needed to explore these potential trends in larger samples.
Despite this progress, many caregivers in our study, across socioeconomic strata, reported delays in the referral process due to their primary healthcare providers' inattention to caregivers' concerns. Pearson and Meadan (2018) identified a similar finding in their study focusing on Black caregivers raising children with ASD. Providers' lack of response to caregivers' worries about their children's development is one potential contributor to the persistent screening and referral disparities for Black children at risk for ASD (Baio et al., 2018; Emerson et al., 2016). Further, some caregivers noted their primary healthcare providers attributed child developmental concerns to prematurity or low birthweight, conditions that disproportionately affect Black children (Giscombé & Lobel, 2005). Those parents who ignored their providers' advice to “watch and wait” and directly sought early intervention were mostly of higher socioeconomic status, which aligns with earlier research finding children in impoverished families or with limited education are especially vulnerable to missed or delayed diagnoses (Daniels & Mandell, 2014).
The second theme, related to perceived racism and poor caregiver-provider interactions, was also a clear provider-related barrier to appropriate screening and referral practices. Indeed, the majority of caregivers felt racism affected their experiences seeking primary healthcare services for their child with ASD, and expressed a need for more respectful, individualized communication with their child's provider. These findings add to the broader literature base that Black patients report lower levels of trust in the medical establishment, which may be ameliorated in part by building stronger parent-provider partnerships and improving access to healthcare services (Benkert, Peters, Clark, & Keves-Foster, 2006; Halbert, Armstrong, Gandy, Jr., & Shaker, 2006; Horn, Mitchell, Wang, Joseph, & Wissow, 2012). Yet, compared to White caregivers, research has found Black caregivers of children with ASD are less likely to report their provider spent enough time with the child, was sensitive to their family's values, and worked as a partner with the parent; all hallmarks of high-quality, family-centered care (Magaña et al., 2015; Montes & Halterman, 2011).
In addition to the two provider-related enabling factors, study participants emphasized that cultural stigma in the Black community related to ASD can contribute to caregiver resistance to seek developmental referrals from their primary healthcare providers, or to follow up on such referrals, supporting past research that cultural factors can impact timely diagnosis and treatment (Burkett et al., 2015; Pearson & Meadan, 2018). Participants across the socioeconomic spectrum identified stigma as a barrier. It is important that primary healthcare providers are aware of cultural influences, such as stigma, that may affect care (Burkett et al., 2015). Additionally, these providers have an opportunity to help ameliorate stigma by engaging in community initiatives that can improve ASD awareness and knowledge. Outreach and partnerships with Black communities could not only help reduce stigma, but it may also serve to increase trust between primary healthcare providers and caregivers, as well as with the wider community.
Our results also suggest that support from family members and friends can motivate caregivers to seek assistance for their children. Primary healthcare providers should routinely discuss and problem-solve issues related to partner and family support with caregivers, as well as include other family members and friends in healthcare conversations when appropriate. Indeed, directly providing support through therapeutic communication, as well as involving patients and their family and friends in shared decision-making are key components of patient-centered communication that healthcare providers should be incorporating into their practices (Street et al., 2009). Additionally, primary healthcare providers can connect caregivers to outside support and/or resources (e.g., ASD support groups), a method by which providers can indirectly improve social support (Street, 2013).
Lastly, our findings highlighted legal and custodial challenges as a barrier to caregivers attending to their primary healthcare providers' concerns and following up on their referrals. Families with these types of challenges might need additional time and support from their providers to seek assistance for child developmental delays. However, negative experiences with other formal systems, such as child welfare services, might exacerbate existing mistrust Black patients have in the healthcare system (Burkett & Morris, 2015; Gallagher, 2014). In order for primary healthcare providers to increase trust and encourage caregivers to share and follow up on concerns regarding developmental delays, it is critical to provide trainings and courses in medical schools that support the development of race consciousness. Providers who view their practice through a lens of race consciousness will be deeply aware of their own racial position and can be attentive to how racial stratification could impact interactions with patients of other races (Bell, 1991; Ford & Airhihenbuwa, 2010).
Our study was limited to data collected only from parents and other primary caregivers. Data collected from other sources, such as primary healthcare providers and/or medical records, would strengthen our understanding of potential barriers to ASD screening and referral processes in primary healthcare settings. Furthermore, this research is also limited by a sample consisting almost exclusively of urban mothers. This is an important distinction, as rural children face unique obstacles to obtaining an ASD diagnosis (Daniels & Mandell, 2014). Additionally, fathers and other caregivers report different perspectives than mothers on caring for a child with ASD (Hastings et al., 2005; Hillman, Wentzel, & Anderson, 2017). More research is needed to investigate the specific needs of caregivers representing the diversity of U.S. families.
Research and Practice Implications
While several large studies have demonstrated persistent racial disparities in ASD diagnoses, little work has been done to investigate the root of these differences, particularly from parents and other primary caregivers' perspectives. Therefore, this research aimed to uncover some of the complex barriers and facilitators to timely ASD diagnoses for Black children, at the crucial junction of screening and referral in primary care. Our interviews with caregivers of diverse socioeconomic levels enabled us to begin to disentangle the effects of race versus poverty on ASD screening and referrals. We found that across nearly every theme, caregivers reported barriers, regardless of their income or educational level. Additional studies are needed to understand how provider, individual and community enabling factors interact with one another, as well as how they operate within specific healthcare and geographic settings.
The four interrelated themes we identified in this study have direct implications for pediatric primary healthcare providers, as well as for larger efforts to reduce the troubling racial and socioeconomic disparities in timely ASD diagnoses. Training for primary healthcare providers that incorporates techniques such as values affirmation and awareness of implicit biases are particularly important for improving communication in race-discordant healthcare relationships (Havranek et al., 2012). Addressing this aspect of communication is key, as the perceived racism that caregivers experienced in our study has been echoed in other research with this population (Lovelace, Robertson, & Tamayo, 2018). Furthermore, including paraprofessionals and community health workers to facilitate communication between parents and providers can reduce unmet health needs (Guerrero, Inkelas, Whaley, & Kuo, 2013). As a significant proportion of caregivers reported accessing early intervention services, there are potentially opportunities for collaboration between primary healthcare providers, early intervention professionals, and children's caregivers to address child developmental concerns early. The development of collaborative partnerships has also been identified by Black caregivers of children with ASD as an important facilitator in gaining access to ASD services (Pearson & Meadan, 2018). Finally, additional barriers to timely diagnoses impacted some of the more vulnerable families in our study, including those with limited education or income, as well as those with children with preexisting developmental challenges. Thus, continued efforts to disseminate Autism A.L.A.R.M. guidelines to primary healthcare and other frontline providers will ensure more families receive access to appropriate ASD interventions. Clearly, federal, state, and local public policies to support efforts to reduce poverty and address structural racism will increase the impact of the work at the primary healthcare level.
The literature about the unique issues affecting Black families raising children with ASD is only just emerging. Interventions to train primary healthcare providers to become conversant on matters affecting Black families, especially in cases in which those families are experiencing the multiple effects of poverty, are crucial to reducing racial disparities in ASD screening, and ultimately, diagnosis and intervention. As the main gatekeepers to specialty developmental and ASD-specific services, primary healthcare providers play a critically important role in delivering culturally relevant care and ensuring all children have an equal opportunity to obtain timely ASD diagnoses and access early interventions.
We recognize individuals in the African diaspora within the U.S. (and elsewhere) have different preferences with respect to using “Black,” “African-American,” or other terms to self-identify (Cross, 1991). However, in an effort to be inclusive, we use the term “Black” in this article to refer to any individuals of African descent.
We appreciate the funding support of a Competitive Innovative Research Award, University of Maryland Baltimore. In addition, we are very grateful to the caregivers who participated in this research and shared their experiences with us. More than 25 organizations supported this study by agreeing to recruit families. We would like to thank them all, particularly The Arc Baltimore, The Center for Autism and Related Disorders, Family Connections, the Interactive Autism Network, and PACT (Kennedy Krieger Institute). Finally, we recognize Dr. Nalini Negi for reviewing an earlier version of this manuscript.