There is a difference between the notions that “race should not matter” and “race does not matter.” Notions of colorblindness often conflate the two [1]. The idea that race “should not matter” indicates that there is a collective goal of making sure race does not affect how individuals are treated, whereas “does not matter” implies that race has no impact on how individuals are treated [1]. Findings indicate, however, that African-Americans experience worse health outcomes than European Americans [2] and report lower levels of trust in the healthcare system due to distinctive socio-historical experiences and racial medical malfeasance (e.g., Tuskegee syphilis study).

When race and disability are combined, it is the axis of one oppression with another. Researchers such as Hartlep and Hosking suggest that race and disability are not biological phenomena, but rather social constructions that have social meaning [3, 4]. African-American families experience the consequences of both social identities. This multidimensionality of social identity describes the presence of the “multiple interconnected memberships which individuals have as they go about their daily lives [4].” Critical disability theory proposes that the social disadvantages that people with disabilities experience are not caused by the disability itself, but by the institutional and attitudinal environment that fails to meet the needs of the person [4]. Healthcare providers (HCPs) and service providers are subject to their own implicit biases and operate within these social definitions of what it means to be an African-American child with a disability.

In their work, Wilkinson and colleagues found that physicians identified discomfort, lack of exposure to patients with disabilities, lack of confidence, and anxiety as factors that impacted their care for individuals with disabilities [5]. Findings have also indicated that Latino and African-American families are less engaged with HCPs and, as a result, African-American and Latino families typically receive less information during appointments [6]. Similar findings indicate that HCPs are more verbally dominant and less engaged with African-American patients than they are with European American patients [7].

Although many new diagnostic tools and practices are now readily available and the prospect of identifying a child by the age of two is more likely now than in the past [8], African-American children with ASD are often misdiagnosed or diagnosed years later than European American [9, 10]. More recently, the Centers for Disease Control (CDC) has corroborated these findings and suggests that African-American children are 30% less likely to be diagnosed with ASD than European American children [11]. Furthermore, HCPs do not always utilize culturally appropriate screenings and have admitted that it is more difficult to recognize symptoms and signs of ASD in African-American and Latino children [12]. Given the diagnostic disparities among African-American children with ASD, parents often face challenges related to access to services and effective communication with HCPs [13, 14].

The three most common barriers African-American families face in accessing these services include the following: gaining accurate and timely diagnoses, socioeconomic status, and cultural dissonance between parents and HCPs [13, 14]. Moreover, findings indicate that while the impact of socioeconomic status among European American children is starting to fade, the impact of socioeconomic status among African-American children with ASD persists. Therefore, findings suggest that, “some disparities in diagnosis stem from racial differences that are independent of socioeconomic status [15].” As such, the CDC has emphasized a need to target strategies that increase awareness of ASD among African-American (and Latino) families and to help families address these barriers so that African-American and Latino children are evaluated and diagnosed at earlier ages [11].

Children with ASD may require high quality primary care, specialized care, complex and specialized educational child care needs, as well as social and recreational outlets that are often delivered via multidisciplinary teams [16, 17]. As such, primary care physicians, developmental pediatricians, special education teachers, speech language pathologists, and school psychologists are among the professionals who support families and children with ASD. Although we have some understanding of potential factors that contribute to the disparities in diagnoses and access to services among African-American children with ASD, there is a dearth of literature that describes the perceptions and experiences of (a) African-American parents of children with ASD and (b) professionals who support African-American children with ASD and their families. Therefore, the purpose of this study was to explore the experiences, perceptions, and recommendations of (a) African-American parents of children with ASD and (b) professionals who serve African-American families of children with ASD. This study was guided by the following questions:

  1. 1.

    What are the reported experiences of African-American parents of children with ASD in obtaining diagnoses and gaining access to services?

  2. 2.

    What are the reported experiences of professionals (e.g., educators, service providers, and healthcare providers) who provide diagnoses and services for African-American children with ASD and their families?

  3. 3.

    What recommendations do African-American parents have for educators, service providers, and healthcare providers to better serve the needs of African-American children with ASD and their families?

  4. 4.

    What recommendations do professionals have to better serve the needs of African-American children with ASD and their families?

Method

Participants

In an effort to recruit appropriate participants (i.e., African-American parents of children with ASD and educators and healthcare providers who work with African-American children with autism), the researchers distributed both hard copy and electronic fliers to community agencies, healthcare agencies, social networks, and schools across a large, Midwestern state.

Parents

After receiving Institutional Review Board approval, participants were recruited through a community autism program, Parent Training and Information Centers, and local community agencies. Individual semi-structured interviews were conducted with 11 African-American mothers of children with ASD, living in a Midwestern state. The inclusionary criteria for parents were as follows: (a) a parent or guardian of a child with a primary diagnosis of ASD, (b) both parents were African-American residents of the state, and (c) the child was in grades K-5 and qualified for special education and related services in a public school, at the time of study. Table 1 includes demographic information about the parents who participated in the study and about their children. All parent participant names are pseudonyms (see Table 1 for more information about the participating mothers).

Table 1 Parent participants
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Professionals

The professional participants were recruited through a local community autism program, an annual autism walk in the community, and local healthcare providers. Focus groups were conducted with nine professionals who worked with African-American children with ASD. Professionals’ experiences were varied and diverse, depending on their role, length of time in the field, and location (e.g., large metropolitan area). The only inclusionary criteria for professionals were that they teach or provide services for African-American children with ASD and reside in the same Midwestern state as the parent participants. To protect the identity of the two healthcare providers who participated in the study, their information is not included. See Table 2 for additional demographic information about the professionals.

Table 2 Professional participants
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Data Collection

To explore parent and professionals’ experiences and perceptions of diagnoses and access to services for African-American children with ASD, parent participants completed a demographic questionnaire and participated in individual, face-to-face, semi-structured interviews. Professional participants completed a demographic questionnaire and participated in one of three focus group interviews. The focus group method helps achieve a greater understanding of a common topic by asking open-ended questions to groups of like participants and encouraging engagement with one another through prompting and questioning [18]. The first author facilitated all interviews and was accompanied by a research assistant during the focus group interviews.

Parent Interviews

The parent interview questions focused primarily on experiences obtaining initial diagnoses, experiences gaining access to services, and recommendations for professionals to better meet the needs of African-American children with ASD and their families. In addition, the researcher followed up as necessary, with additional probes based on the information mothers provided in the family information questionnaire. All interviews were conducted at a time and place that was most convenient for the participant (e.g., family home, library). Interviews were audio-recorded using Voice Record software and transcribed verbatim. The average length of the interviews was 53 min.

Professionals Focus Groups

Three focus groups, with 2–4 participants in each, were conducted in locations convenient for the participants [19]. Prior to conducting each focus group, the facilitator reminded the participants of the purpose of the focus group and invited them to ask questions. The facilitator informed participants that what they shared during the focus group should be kept confidential and not shared outside of the group. The focus group interview protocol included eight open-ended questions related to the following: (a) professionals’ experiences with African-American children with ASD and their families, (b) perceptions of barriers and facilitators to services for this population, and (c) recommendations to better serve the needs of these children and their families. The facilitator followed up with probes when necessary. The average length of the focus group interviews was 50 min.

Data Analysis

Data analysis procedures for both parent interview data and professionals’ focus groups data were identical. Both individual interviews and focus groups audio recordings were transcribed verbatim by a research assistant. To assess the accuracy of the transcriptions, a second research assistant listened to each interview and compared the transcripts to the audiotapes. All discrepancies were found to be minimal and were corrected prior to data analysis. Three researchers completed the data analysis as a team and used a constant comparative method [20] to analyze both the individual interview and the focus group interview data. In the first level of analysis, the researchers each read and recorded memos for the first transcript, independently. The team then met to reach a consensus on initial categories and to develop a structured coding scheme. In the second level of analysis, after categories were clearly defined, the team independently read and coded the remaining transcripts one at a time, revised the categories as needed, and identified subcategories. During the third level of analysis, the team re-read the identified subcategories and worked together to develop emerging themes.

Credibility and Trustworthiness

A number of measures were employed to strengthen the credibility. First, convergence of data sources was achieved through data comparison (i.e., demographic questionnaire and semi-structured/focus group interview) and investigator triangulation (e.g., researchers, three research assistants). Second, the first author was forthright about her position and perspectives within the context of this research by monitoring her possible biases through field notes, memos, and regular debriefings. Third, level 2 member checks were conducted to confirm the accuracy of the transcript summaries. Finally, the first author worked collaboratively, with a culturally and ethnically diverse research team during data analysis to ensure that data analyses and interpretations were not idiosyncratic [21].

Findings

Overall, the findings indicated that parents’ satisfaction with services were varied; nearly half of the parent participants were satisfied with their services, while half of the parent participants also expressed dissatisfaction with their services. In addition, there were two primary themes in this study: facilitators to service access and barriers to service access. Within these themes, there were seven codes, many of which were consistent across parent participants and healthcare provider participants (see Fig. 1). The findings from this study are presented in four sections: (a) the experiences of parents, educators, and healthcare providers; (b) facilitators for early diagnoses and access to services; (c) barriers to early diagnoses and access to services; and (d) recommendations for professionals and parents.

Fig. 1
figure 1

Emergent themes across participants

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Parents’ Experiences

Satisfaction and Dissatisfaction

Parent satisfaction and dissatisfaction with services were two emergent categories related to participants’ overall experiences accessing services. In some interviews, parents expressed both satisfaction and dissatisfaction with the supports they received.

Satisfaction

Five out of the 11 mothers expressed that they were generally satisfied with their services, service providers, and/or the environment in which they received services. Marcy for example, expressed her satisfaction with her daughter’s team of in-school providers: “She has a wonderful team that is really for her, especially in a school district where there are fewer kids that have autism. I think that they are really putting their best foot forward and I think part of that has to do with us as parents and advocating.” Similarly, Patricia explained that her satisfaction with her son’s progress was the reason she did not see the need to seek home and community services for her son. She said, “I have not tried to do any therapies outside of what he gets at school because he has come a long way.”

Dissatisfaction

Parent views regarding dissatisfaction were expressed from six out of 11 mothers. Carla expressed her dissatisfaction with some of the behavioral and instructional strategies she observed in her son’s classroom. She said:

I was so pissed with the school after I went in there one day. I felt like they were animals, to be honest—with the token economy system where you put a piece of popcorn down. I am like, these are not monkeys. So, it’s like, what do you do because you want your child to be in a comfortable environment—you like them to receive services they need.

Maria also expressed her dissatisfaction, as it was related to the availability of community services for her son. She shared, “I would like to get some behavioral analysis services for him to help with his fits but getting services for him is crap. Period.” Judy reflected on her dissatisfaction as well. She said, “I feel the need to pay for outside services [is] because if I had to rely on just the public school services, [there’s] no telling how much further behind she would be.” Finally, Patricia expressed her dissatisfaction with the service providers’ training and skills. She said, “I don’t feel like they [school OT and SLP] are skilled enough, I just don’t feel like they are trained properly to handle the situation.”

Satisfaction and Dissatisfaction

In a few cases, participants expressed both satisfaction and dissatisfaction with services. Patricia, for example, not only expressed that she was satisfied with the progress that her son was making with his school-based services, but also felt that the providers could benefit from more education and training about how to support the family as a whole.

Educators’ Experiences

During their focus groups, educators were asked to share how their experiences with African-American families of children with ASD differed from other families, if at all. One special education teacher shared the following:

I don’t really look at it as that. I don’t look at it as African American versus Caucasian. I just look more at the needs of the individual child. There’s so many other factors when you get into autism spectrum disorder that hinder and also benefit the child that like, race is one of the last things I look at.

An African-American paraprofessional shared her views in response to the same question, “For myself, naturally I look at race because of me being a minority. Knowing that [minority students] may come from a lower socioeconomic status or have a lack of resources affects how I interact with the kids.”

One paraprofessional from the autism special school shared the following about her experiences with African-American students with ASD:

Usually they are working on tying their shoes, going to the bathroom, things of that nature. That’s what I’ve noticed about the African American community. They have been diagnosed a little later in their lives due to medical issues, funding, and sometimes, I think a little bit of neglect.

A second paraprofessional from the special school for children with autism highlighted the impact of parent-professional partnership and the extent to which parent participation has been challenging in their school, particularly among parents of color:

Parent participation and being able to reach parents is just extremely difficult. A lot of times the teacher and the parents are not on the same page about a variety of issues. And so it is hard… it makes things harder for the student to learn things here, to have certain standards here, and then those aren’t implemented at home. Or it’s not followed through. It’s not continued at home. And so that brings up a whole other set of issues and confusion to a child. I have noticed that across the board—[with] both Latino children and African American [children].

Finally, a special education teacher who teaches in an autism classroom shared her experiences around the perception of autism and how it has potentially impacted her students and their families:

Since I’ve been in this room I’ve been doing more reading online about autism. And it’s very white online. Like if you read blogs it’s all white moms. And so, I can see how that would feel like, oh well then, my [African American] kid doesn’t fit into this picture.

Healthcare Providers’ Experiences

When HCPs were asked to describe their experiences with and perceptions of African-American families of children with ASD, they noted the role of culture, the importance of family, the impact of varied socioeconomic statuses, and most often, the importance of trust as primary factors that shaped both their perceptions and interactions with African-American families of children with ASD. The nurse practitioner reported that across racial and ethnic backgrounds, families are often driven to seek diagnoses and access to services based on the severity of child behaviors. She went on to say, however, that this varies by family and may be related to the way African-American families approach behavior:

It seems like the kids’ behavior is the dominating symptom that guides people to direct

them to our services. So it’s driven by behavior and the more profoundly autistic they

are, their symptoms would place them more on the autism spectrum probably much later

depending on how the family is trying to utilize their resources and resources are

available.

The nurse practitioner went on to describe her personal perception of managing challenging behavior in the African-American community:

I find that sometimes families, (I don’t know if it’s fair for me to say more so

whether or not I think it’s in the African American culture) try to handle the behavior for a while themselves before it’s—maybe there is a stigma for reaching out [and saying] ‘we’re having behavior problems can you help us?’ and then that’s where we’re putting all the picture together and saying, ‘he has symptoms of this or she has symptoms of that and we would like to do some further testing because perhaps he might have autism.’ I think families are trying to manage [challenging behavior] themselves before they’re reaching out for somebody else’s help.

The developmental pediatrician went on to highlight, from his perspective, the importance of family support within the African-American community:

I think that family is super important in the African American community and they can take care of themselves. What’s very interesting is while there is clear understanding that the resources may be less, that doesn’t stop the African American community from resorting to whoever they need to resort to in the family to take care of whatever problem they need to take care of. [African Americans] have a long-standing way of sort of getting along. I think the word survival is an appropriate word. There’s not really an adequate word to describe the kind of the robustness of the family within the African American culture, which knows how to just take care of things.

Facilitators for Early Diagnoses and Access to Services

While parents, educators, and professionals reported varied perspectives and experiences based on their roles, findings indicated that participants faced many more perceived barriers to obtaining diagnoses and access to services than facilitators. Participants did, however, identify two primary facilitators to ASD diagnosis and access to services. One emergent facilitator that parents identified was advocacy. A second emergent facilitator that both parents and healthcare providers consistently identified was community networks (see Fig. 1).

Advocacy

Parent participants described their efforts to advocate for their children as a key facilitator in obtaining diagnoses and gaining access to services. Nine out of the 11 parent participants spoke to their experiences advocating on their children’s behalf and highlighted the impact it had on their ability to acquire supports. Tiffany shared the following:

We were able to advocate to get her [aide] to continue to be with our daughter and we even had to be specific in what we wanted to put in her IEP. They didn’t want to put personal aide. They wanted to put classroom aide and we had to say, ‘I am sorry, we weren’t born yesterday. We know the difference and we want a personal aide who is specifically for our daughter not somebody that you can pool and do whatever you need.’ [14].

Laura emphasized her efforts to advocate for specific goals for her. She said, It [IEP meeting] is not tense for me because I say what I need to say. I could care less about science and social studies—that is not important to his well-being. His reading, his math, and his comprehension is what he needs.

Community Networks

The developmental pediatrician spoke to the importance of family and what he has learned about loyalty among his African-American patients and their families, “Loyalty. That’s awesome in the African-American community. Loyalty. You know, we’ve had grandmas call up our practice to give us a vote of confidence on the phone.” Similarly, parents noted that family members and friends were instrumental in encouraging them to seek support. Laura highlighted how having a community network in her neighborhood friend helped her overcome the fears and challenges of a new school placement for her son. She shared the following,

I hated the area, but…a friend of mine was in special education at the school and I called her up directly and I was like, ‘hey, I am considering putting my son in your school.’ And, so I had to put him in the school of my neighborhood and I was like, ‘oh God, my neighborhood is going to have to change if I have to put him in [this] school. So, my friend put me in touch with [the administrators]. So, we had already talked, you know, prior to him going to school. So, I was their peer.

Barriers to Early Diagnosis and Access to Services

Both parents and professional participants reported several challenges that families face with regard to obtaining a diagnosis and/or services for African-American children with ASD. The most common barriers that were identified across participants included the following: parent denial, limited knowledge of ASD, cultural differences between professionals and families, and healthcare coverage/costs. These emergent themes are highlighted in Fig. 1.

Parent Denial

Perceptions of parent denial emerged primarily across special educators and paraprofessionals as a barrier to diagnoses and services. One of the special education teachers who teaches in a cross categorical classroom suggested that African-American parent denial impedes child progress because parents are learning how to cope with a new ASD diagnosis. She said, “I think part of it is parent opinion. Because it’s hard to hear that something is wrong with your child.” Another special education teacher shared the following related to the impact of ASD specifically among African-American families:

I think the denial is strong because you have that diagnosis and so, now I feel like with African American parents this one more thing I have to deal with. And I really have to deal with it. You know I love my child, but I think a lot of us think, ‘I got to get this done, this done, I have to survive.’ So, it’s like, this [autism diagnosis] is another huge burden that I have to deal with. Do I have to deal with it? Maybe I could put it off until later?

HCP’s Limited Knowledge of ASD

Parents and healthcare providers noted that in many cases, HCP’s have limited knowledge of ASD; both groups of participants spoke to the impact that this limited knowledge has on early diagnosis, and services, particularly among African-American families. Lynette reflected on how she saw early symptoms of a delay, however, her son’s pediatrician, who she learned had little knowledge and experience with ASD, dismissed her concerns. She shared the following:

He wasn’t meeting the milestones. He wasn’t crawling. He didn’t cry. He didn’t attempt to walk. And, when I took him to his pediatrician and told him what was going on he was just like, “oh, he will grow out of that. He will be fine.” And, I kept telling him that, you know, there was something different about him. That it wasn’t normal; he wasn’t meeting his milestones. He was like, “oh, he will grow out of it. He will be fine.”

Healthcare professionals echoed the concerns that parents voiced about the limited knowledge of ASD within their profession. For example, the nurse practitioner shared the following:

The African American kids that we see that do have an autism diagnosis maybe have seen [a psychologist] and been treated for things like mental health. I guess autism could be mental health but, [they were treated for] even bipolar [and] aggressive behavior type things. I worry that they are being misdiagnosed first by somebody who’s not thinking autism and then being slapped on all kinds of medicine.

She went on to say, “I think that their autism spectrum sometimes is misdiagnosed initially as other [mental health illnesses]. You know, bipolar for sure, I’m sure that comes in there.”

Finally, the nurse practitioner reflected on how parent’s knowledge of ASD is often hindered by their fears. She said, “Until [parents] understand [autism], I think there’s a fear about it.”

Cultural Differences Between Professionals and Families

Across participants, cultural divergence was viewed as a barrier to obtaining early diagnoses and access to services. For example, the nurse practitioner said: “Sometimes I think that there really is cultural things; I don’t know like if we get almost like a southern influence too, but sometimes I feel uncomfortable. They’ll tell me, ‘white women wanna coddle them too much.’ You know? There’s that difference too.” She went on to explain how the cultural disconnect between African-American mothers and European American healthcare providers like herself had an impact on early treatment:

I’m seeing things one way but they may be disagreeing because the parenting styles are different. These are things that African American moms have told me you know that they sometimes believe better discipline will make the symptoms better. So, it’s really hard for me to sometimes feel like I have a way to have them trust me. I think that it takes a while for them to build that trust and I think that trust is what delays a diagnosis.

One of the parent participants, Meghan, spoke to her perceptions of the impact that her race and culture had on her experiences:

I felt like because I was a black woman that they looked at me like I wasn’t supposed to know [about services] and I came into the IEP prepared. I felt like the system down there was built to have [black children] fail. It was a mess and not even having a child with autism. I think it was any black child.

Finally, one of the paraprofessional participants identified knowledge of autism, access to appropriate HCPs, and denial as barriers to early diagnoses and supports. She said,

I think it [ASD diagnosis] has to do with everybody…We don’t think of anything until maybe it’s too late. The doctors [are] saying, ‘well you know kids don’t walk until they are 1.5-2 years old.’ So, I think it’s a little bit of everything. It’s not being educated enough, not wanting to accept that, or it’s not going to the right doctor.

Healthcare Coverage/Costs

Parent participants shared their frustrations related to the impact of healthcare coverage and costs. For example, African-American mothers of children with ASD have suggested that their children have better access to ABA services under state healthcare plans, rather than private insurance [14]. One parent participant expressed that she and other parents have run into problems with private health insurance because their insurance does not cover many of the services that their children need. Similarly, the developmental pediatrician spoke to the changes in medical coverage over the years, and the impact this has had on the families he serves:

So back in the olden days when everybody had just straight Medicaid, I could see

anybody from anywhere and now when they are referred by early intervention it’s a state

contract and they can have private insurance or whatever insurance; I get paid by the early intervention program for those kids. But now there is nobody who is accepting all Medicaid programs; nobody.

Recommendations

Recommendations from parents, healthcare providers, and educators consistently addressed the need for (a) increasing ASD knowledge, awareness, and training and (b) providing culturally responsive service delivery.

Recommendations for Parents

Across participants, findings indicate that there is a need for increased knowledge, awareness, and education around ASD within the African-American community. One parent shared how her experiences with ABA therapy over the years have shaped her views and expectations of her daughter. Tiffany said:

So, for me it is like the parents not only need to know the resources that are available and

how to access them, but they need training themselves. You don’t become an expert overnight. It takes time. It took somebody showing me how to actually begin the process. Then, of course, we have had to make adjustments based on our daughter specifically because we know again it is not a one-size-fits-all, but helping parents know how to go about providing services themselves.

Deborah highlighted the importance of parent training as well: “Parents not only need to know the resources that are available and how to access them, but they need training themselves.” Another parent, Donna, highlighted her recommendations for parent support: “For me, the biggest thing is to help me to understand or help me to help him; not the generic class, but maybe what your particular child might need. More parent education as far as how to navigate these systems.” Finally, Jennifer said, “There is so many of us, that our children will benefit from the diagnosis and the services, but we as a culture [African Americans] feel like it looks bad on us.” In other words, from her perspective, there is a stigma attached to labeling and disability in the African-American community that sometimes impacts individuals’ decisions to seek services.

Recommendations for Professionals

Both parents and HCPs suggested that ASD diagnostic training would be beneficial for HCPs in particular. Parent participant Kim, shared the following, “I think medical professionals, they definitely need to teach this in the schools because it doesn’t make any sense for a parent to get a diagnosis and go back to their pediatrician and they can’t help them.”

Parents also recommended that HCPs work on collaborative teams to address the unique and individual needs of their children. Marcy highlighted the importance of listening to families’ voices. She said,

I recommend that educators, health professionals, and other service providers really listen to the parents. I think everybody is so busy and time is so limited that, you know, things fall between the cracks. Because in our case, I think our daughter should have been diagnosed a whole lot sooner than she was.

Finally, one parent provided a recommendation for healthcare providers that would help parents navigate the service system. Maria shared the following: “It would be nice if upon discovery there was more than just some print out that they were handing you—if there was an actual person that they could hand you. Like the social services person—have that person you can call.” Interestingly, Judy provided a suggestion that would play on the strengths of HCPs’ specialties. She said:

If a pediatrician has a patient with autism, I think the appointment should be tag-teamed with a developmental pediatrician. Once a year it should be a team appointment; general and developmental pediatricians and then maybe they can take a video or something. They would get a better idea of what was going on developmentally.

Finally, in regards to educational professionals, Lynette suggested the following: I think for all schools, since there are so many children on the spectrum now that are filtering in, everyone needs to have not only training, but experience working with individuals on the spectrum. There is a mindset in the school system that, ‘well I have training so I know what to do’, but the problem is, if you meet one person with autism, you meet one person with autism. They are not all the same.

In addition to recommendations related to education and training, participants noted how important it is for all professionals to engage in culturally responsive practices. Tiffany said,

I would say to those professionals, paying closer attention and listening to parents is going to be helpful as well. As far as children of color, I think that there seems to be in my opinion, it’s new among African American people and maybe it has been there all the time and it has just been diagnosed. But, I think we are just starting to see more African American children being diagnosed with autism. For a long time, it was ADD and ADHD. That is what all of the diagnoses have been and I think that if the professionals are doing their job beyond just adequate they will be able to help families. I think that resources are going to be extremely important and the people will have the information. They have to be willing to give it to the parents, especially those that wouldn’t know how to access it otherwise.

Discussion

The purpose of this study was to explore the experiences, perceptions, and recommendations of both African-American parents of children with ASD and professionals who support African-American children with ASD. Findings from this study indicated that parents and professionals alike reported diverse experiences and perceptions related to diagnoses and access to services. Most notably, perceived facilitators to equitable access to services were limited, and many of the parent and professional perceptions of barriers to ASD diagnoses and services were aligned across parent participants and HCP participants. The impact of culture, however, emerged as a main theme when discussing barriers across all three groups of participants—parents, HCPs, and educators.

Educators, HCPs, and Rejecting Notions of Color Blindness

While explicit racial discrimination in education and our health care system have been prevented by law, that does not mean that implicit racial biases do not continue to exist or permeate across various social institutions. Historically, African-American children and their families have faced many challenges rooted in systemic inequality in schools in the USA [22]. As such, African-American children with autism and their families have become, in many ways, twice underserved [23]. Furthermore, African-American children with autism who are also living in poverty are three times underserved.

Educators often have implicit, unconscious, racial biases that impact student success [1]. In this study, three European American educators suggested that they do not see color when they think about meeting the needs of African-American students. It has been demonstrated, however, that African-American students and other ethnically diverse students perform better academically when they are “taught through their own cultural and experiential filters” [24]. The assumption that “cultural and racial blindness” is inherent in education and has nothing to do with culture is invalid [24]. This study and previous research findings demonstrate that education has everything to do with culture. Like education, the healthcare system should be culturally responsive in order to be more equitable. Without culturally responsive providers, children of color with ASD and their families will continue to face disparities related to timely diagnoses and access to services [14, 15, 25]. We must reject the notion that race has no place in our discussions about equity in education and health care services. This will only further perpetuate the racial disparities that exist within our systems of care in the USA. We must reject the ideology that race does not matter but embrace the notion that race should not matter in addressing systemic inequities.

Parents, HCPS, and Access to Information about ASD

The recommendations from participants in the current study corroborate the previous work of [12, 14, 26], all of whom suggest that African-American parents need more opportunities to access information about ASD. Parents, healthcare providers, and educators in this study have all noted that more education and training for parents, teachers, and healthcare providers is critical. The disparities in diagnoses and access to services among African-American children and their families point to the need for additional services and supports that can shape parent knowledge, reduce stigma around disability in African-American communities, and empower families to advocate for their needs (e.g., parent advocacy and empowerment programs). Among professionals, there is a need for culturally responsive service delivery, increased knowledge of autism, and familiarity with diagnostic criteria that is driven by trainings. The disparities are present, and, as such, African-American parents need to feel empowered, knowledgeable, validated, and confident that their voices are being heard. Professionals can support families in this vein by engaging in culturally responsive practices, building strong parent-professional partnerships, and strengthening their own knowledge and expertise around autism to better support the needs of African-American children with ASD.

Implications for Future Research and Practice

This is the first known study to uncover the narrative, lived experiences of both African-American parents of children with ASD and the professionals who provide services for their families. As such, there is still a great need for future research around the experiences of cultural/ethnic minority groups in the autism community and their providers.

Limitations

There are three primary limitations that should be taken into consideration when interpreting the findings of this study. First, the participants in this study were from varied geographical contexts across a large Midwestern state (i.e., large urban, small urban, rural). In some cases, the healthcare providers and educators who participated in this study were the providers for parent participants’ children, but not in all cases. Future studies should aim to recruit parent-professional dyads to better explore the perceptions of services and care. Second, the parent participants in the study were mothers only. Third, only mothers of children with ASD participated in the interviews. Future work should aim to include the voices and perspectives of African-American fathers and other caregivers. Finally, each of the focus groups was comprised of two–four participants, notably smaller than the ideal focus group size [19].

Research

More research is needed to (a) explore methods to address cultural divergence between professionals and African-American families of children with ASD, (b) investigate strategies for increasing knowledge and awareness of ASD in the African-American community, (c) increase knowledge of ASD diagnostic criteria among HCPs, and (d) strengthen advocacy and empowerment among African-American parents of children with ASD.

Practice

Across participants, findings suggest that there is a need for professionals who provide services for African-American children with ASD to receive more training and education around (a) ASD diagnostic criteria, (b) culturally responsive practices, and (c) strategies for building trust between them and the families they serve [14]. Moreover, findings across both parents and professionals suggest that African-American parents can also benefit from increased knowledge and awareness of ASD and tools to help them gain access to adequate services [14]. Finally, community agencies should aim to provide more resources for families of children with ASD, particularly for those families living in poverty and in rural communities.