Screening, Diagnosis, and Intervention for Autism: Experiences of Black and Multiracial Families Seeking Care

Abstract

Purpose:

Despite advances in screening and awareness, Black and multiracial families continue to experience challenges when seeking an autism diagnosis for their children.

Methods:

We surveyed 400 Black and multiracial families of young children with autism from an existing research database in the United States about their retrospective diagnostic experiences. We gathered quantitative and qualitative data and engaged in iterative coding to understand timing and content of first concerns, families’ experiences of care providers and systems, and the impact of race and culture on accessing care.

Results:

Families provided examples of early developmental concern and described provider, systemic, and cultural barriers and facilitators to care. Families also provided insight into the influence of culture and made recommendations on how the medical system could better care for Black and multiracial families of children with autism.

Conclusions:

Results add to a growing body of literature supporting the need for culturally sensitive and accessible care related to developmental monitoring, diagnosis, and follow-up care for Black and multiracial children.

Black, African-American, and multiracial families are underrepresented in medical and psychological research (Alegria et al., 2021; Pugh et al., 2022; Ray et al., 2022) including research related to autism spectrum disorder, or ASD (Hilton et al., 2010; Shaia et al., 2020; Steinbrenner et al., 2022). Reasons for this are multifold and include the impact of structural racism on diagnostic ascertainment and family engagement (Lane et al., 2022) as well as well-documented incidents of unethical and harmful behavior in research (Brewer et al., 2021; Diemer et al., 2022; Griffith et al., 2020). This lack of not only inclusion, but also active engagement and consultation of Black and multiracial community members impacts scientific knowledge and clinical practice, including our understanding of the autism phenotype and its interaction with family systems and cultural beliefs (Broder-Fingert et al., 2020). Specifically, because the early identification of autism relies heavily upon parental report of concerns, procedures for screening for autism in toddlerhood may not adequately capture the experiences of parents from diverse backgrounds (Golson et al., 2022; Kuhn et al., 2021; Straiton & Sridhar, 2021).

Structural racism within medical systems and diagnostic pathways (Broder-Fingert et al., 2020; Lane et al., 2022; Straiton & Sridhar, 2021), inequitable access to adequate developmental monitoring and screening (Barger et al., 2022; DeGuzman et al., 2022; Imm et al., 2019), as well as implicit or explicit provider bias (Garb, 2021; Obeid et al., 2021) create challenges for Black and multiracial families above and beyond the well-documented diagnostic barriers of provider shortages, long wait times, and financial costs (Antezana et al., 2017; Straiton & Sridhar, 2021). The “diagnostic odyssey” of Black families was described by Constantino et al. (Constantino et al., 2020), who conducted one of the largest multi-site studies of Black children seeking ASD diagnosis. They tracked 584 children from four sites in the United States and found that Black children were diagnosed, on average, greater than three years after parents first shared concerns with professionals, regardless of insurance status. They also documented disproportionate levels of intellectual disability without identified cause beyond diagnostic delays (Constantino et al., 2020). Fombonne and Zuckerman (2022) examined diagnostic timelines and clinical profiles of age- and sex-matched Black and White children referred for autism evaluation across 13 sites in the United States and Canada. Like Constantino et al., they found significant diagnostic delays for Black children, after controlling for gender and parental education. They also found that Black parents were more likely than White parents to endorse (or be asked by providers about) mental health or behavioral concerns, as opposed to autism-specific concerns, as part of the initial diagnostic evaluation (Fombonne & Zuckerman, 2022).

Diemer et al. (2022) provided recommendations for researchers seeking to conduct more racially inclusive research, including the importance of qualitative methods and collaborating with Black families to better understand their needs. Several qualitative studies sought input directly from Black parents about their experiences within the diagnostic system. Burkett et al.(2015) interviewed 24 African-American family members of children with autism from urban regions of the Midwestern United States. They identified a theme of “providing protection” that spanned multiple domains, including experiences of biased healthcare systems and providers that inhibited equitable access to diagnostic care or intervention. Families also spoke about a need for community education related to a lack of knowledge or stigma associated with autism (Burkett et al., 2015). More recently, Stahmer et al. (2019) conducted focus groups with families of children with autism from varied ethnic, racial, and linguistic backgrounds in California, New York, and Pennsylvania. They identified themes and codes related to the diagnostic experience that included: beginning stages (early concerns), parental concerns and feelings, knowledge of autism, barriers to the process, cultural differences, recommendations, helpers, and the process itself. Within this group, Black families reported that providers dismissed their concerns and blamed children’s behavioral differences on poor parenting. Although all parents described community barriers such as long waitlists and a lack of friend or family support, Black families specifically endorsed cultural differences regarding stigma associated with autism diagnoses (Stahmer et al., 2019).

Based on needs identified within the literature as well as input from community partners, our team conducted a preliminary review of well-child records to examine surveillance care and documentation . We examined the primary care experiences of 39 Black or African-American children, spanning 45 different providers, ascertained as showing behaviors consistent with ASD (Weitlauf et al., 2022). We documented common provider behaviors (e.g., screeners used, referrals made), opportunities for parents to express concerns (e.g., screener content, free text), and common symptoms endorsed (e.g., screener responses, visit notes). In that small sample, we found that most families expressed concerns about associated behaviors (such as sleeping) rather than classic features of early autism. Providers commonly referred families for speech-language evaluation rather than developmental testing and were more likely to make these referrals if providers themselves noted developmental concerns. If parents alone expressed concerns, providers usually waited until the next check-up to make a referral, adopting a “wait-and-see” approach documented in other literature (Smith-Young et al., 2020). Results of this preliminary work yielded questions about how and when parents expressed concerns, their experiences with screening and developmental monitoring, and what providers might do to improve the process.

The goals of this project were threefold. First, we wanted to understand Black and multiracial families’ experiences of early ASD symptoms using pre-existing diagnostic criteria and associated symptoms, as well as through freeform qualitative input eliciting content of first concerns. Second, we wanted to understand families’ experiences of care providers and systems, specifically the ways in which primary care providers were or were not helpful. We leveraged a nationwide database to expand on previous studies with more regional emphases. Finally, we wanted to describe family perspectives on how racial background did or did not impact the diagnostic process, including cultural differences in perceptions of ASD and disability. We then gathered participants’ recommendations on what care systems and providers can do to better support Black and multiracial families as part of the diagnostic process.

Methods

Recruitment

Participants included 400 parents of children with diagnoses of autism spectrum disorder (ASD) who participated in the Simons Foundation SPARK Research Match program. Eligibility criteria included being the parent of a dependent child ages 1 year to 8 years, 10 months that were enrolled in SPARK; having completed a data consent for SPARK, and the parent and child self-identifying as Black or African-American (including biracial and multiracial families). At the time of this study, all SPARK participants were required to speak English.

Potential participants were first identified by the Research Match team, whose platform allowed them to share study information with their consented participants without having to share their identifying information with the external study team. It then sent an email invitation to eligible participant batches. Five sets of batch emails were sent to meet the recruitment target of 400 families. Batch emails began on August 11, 2021 and ended on August 30, 2021, with a total of 1595 families contacted. Two reminder emails were sent on August 14 and August 19, 2021.

Of the 1595 families, 473 expressed interest in the study, 413 completed the consent form, and 400 completed the entire survey, with recruitment closed on September 1, 2021. Participants were compensated $50 for their time. All procedures were approved by the Institutional Review Board of the coordinating medical center as well as the Simons Foundation Research Match Team.

Survey Design

The Diagnostic Experience Survey (DES) was designed as part of an iterative process between members of the investigative team, which includes licensed clinical psychologists, developmental behavioral pediatricians, medical students with a background in public health, research assistants, and community partners that serve families with ASD from diverse communities. Team members include individuals from the Black or African-American community as well as family members of individuals with developmental disabilities, including autism spectrum disorder. Content reflects topic areas identified in our previous work as well as those identified in existing literature (Diemer et al., 2022; Stahmer et al., 2019). The format of the final survey design, which elicited written responses from caregivers, was modified with input from the Research Match team to adhere to electronic distribution guidelines and enhance translation to online format. See Table 1 for content areas and questions included in the final DES, which included a mix of Likert scales, checkboxes, and free responses.

Table 1.

Diagnostic Experience Survey content.

Category	Content
Demographic information	Parent role Parent and child sex, race, and ethnicity
Diagnostic Process	First person to express concerned about child development, and age it occurred First person to express concern about ASD, and age it occurred Content of early concerns Level of parental concern relative to other people Number of professionals seen during diagnostic process Age of ASD diagnosis / other diagnoses given
Factors that may impact diagnostic process	Impact of race, ethnicity, or immigration status Cultural differences between self and providers Whether and how pediatricians were helpful or not, with diagnosis and follow-up What would have made the diagnostic process easier In hindsight, past child behaviors now recognized as being associated with ASD
Lessons and recommendations	What parents wish they had known or done differently What the medical system could do to support Black parents concerned about autism Optional free response

Participant Demographics

Of the 400 parents that completed the survey, 385 identified as mothers (95%) and 15 as fathers (5%). Although the survey was open to any caregiver of a biological child with ASD that met inclusion criteria, no extended family members (such as grandparents) participated. Mean caregiver age was 36.98 years (sd = 7.24 years). Sixty-seven parents (16.75%) identified themselves as of more than one racial background, of which 40 (10%) identified as Black or African-American and White, with an additional 27 individuals (6.75%) reporting three or more racial backgrounds. Twenty-five parents (6.25%) identified as Latinx. Mean child age at time of survey completion was 5.92 years (sd = 1.69 years). Most children were male (n = 313, 78.25%; 87 female), with 98 children (24.5%) described as having more than one racial background (including 28 [7%] who identified as Black or African-American and White, with an additional 70 individuals [17.5%] described as having three or more racial backgrounds). Forty-three children (10.75%) were described as Latinx. Parents were instructed to answer questions while thinking about the oldest eligible child with ASD living in their home.

Data Entry and Analyses

Qualitative data were analyzed via an iterative process informed by team members, experts in structural racism and the experiences of Black and multiracial families within the medical system, as well as a biostatistician with expertise in qualitative data analysis. Qualitative data were derived from open-ended responses to six questions (see Table 2). De-identified survey responses were provided to the team by SPARK staff and input into Dedoose (SocioCultural Research Consultants, 2022) qualitative data coding software. Analyses were conducted by a team of three research staff that included a licensed clinical psychologist and two study staff members with backgrounds in medicine, public health, and autism-related care.

Table 2.

Diagnostic Experience Survey: Open-ended qualitative questions.

1) “Do you feel that there were cultural differences between you and the professionals you saw that affected the diagnostic process? If yes, please describe those cultural differences and how you think they impacted the diagnostic process.”

2) “Was your child’s pediatrician helpful during the diagnostic process? If yes, how were they helpful? If no, what happened?”

3) “Did your child’s pediatrician help with follow-up after your child’s diagnosis? If no, what happened?”

4) What would have made the diagnostic process easier or less confusing for you and your child? If you selected “other,” please let us know what else would have made the process easier.”

5) “Knowing what you know now, are there behaviors that your child showed before their diagnosis that you did not recognize as autism symptoms, but now know are part of autism? If yes, please describe those behaviors.”

6) “If you could go back in time, what (if anything) do you wish you could have known or done differently during the diagnostic process?”

We conducted two layers of qualitative coding (Corbin & Strauss, 1990; Saldana, 2021). The first layer was an open coding process in which we engaged with the data and asked questions of it based on a priori themes identified in previous work (such as “barriers to diagnosis,” “early autism symptoms,” or “racism and discrimination”). This initial broad coding set helped us move to more narrow categories of parent and child codes. Specifically, each member of the research team independently reviewed full response transcripts of the first 100 cases and generated parent and child codes based on their understanding of the content. During this process, they met twice a week to engage in a second layer of axial coding, discussing the codes they generated independently and making comparisons to explore relationships between codes and group them accordingly (Corbin & Strauss, 1990; Saldana, 2021). For example, “pediatricians making referrals” and “pediatricians providing information” were grouped into “helpful pediatrician behaviors,” a child code of “facilitators of diagnosis.” The team then applied those parent and child codes to the entire data set of 400 participants, including re-coding of the original 100 response sets. If new codes emerged as part of this next round of analysis, any previously coded excerpts were reviewed within Dedoose to determine if they belonged to the new coding group. Where code discrepancies occurred, the team lead facilitated discussions to determine the final code assignment and reviewed codes a final time for redundancy to ensure that the same participant responses were not counted twice within a specific code. Additionally, research team members with lived experience in the Black and African-American communities reviewed final codes to verify the fidelity of excerpts related to race, culture, and racism.

Results

Quantitative Survey Responses

Emergence of first concerns.

As seen in Table 3, about half of parents had concerns about their children’s development before the time they were 18 months of age, with the timing of ASD concerns arising somewhat later. Most parents reported that they were more or somewhat more concerned about their child’s development than other people (n = 244, 61.9%); around one-fourth indicated their level of concern was equal to other people’s (n = 99, 25.1%), and 51 wrote they were less or somewhat less concerned than others (12.9%).

Table 3.

Emergence of concerns about development and autism.

	N / % of parents expressing…
	First developmental concerns	First autism concerns
Before 18 months	204 (51.6%)	120 (30.5%)
19-24 months	116 (29.4%)	155 (39.4%)
25-36 months	23 (5.8%)	66 (16.8%)
After 37 months	0 (0%)	52 (13.3%)
	First person to mention autism
Parents	223 (56.5%)
Pediatricians	57 (14.4%)
Extended family members	39 (9.9%)
Spouse/partner	20 (5.1%)
Teacher	22 (5.6%)
Other medical providers	17 (4.25%)
Other	18 (4.5%)

Content of first concerns.

When thinking about their children’s early development, parents were asked to choose which of six categories they remembered being first concerned about or told about by others. These categories were informed by commonly queried aspects of developmental functioning within our institutional medical records system (Weitlauf et al., 2022). Most parents endorsed speech (n = 350; 87.5%), followed by social skills (n = 245; 61.25%), behavior (n = 231; 57.75%), motor skills (n = 139; 34.75%), eating habits/diet (n = 135; 33.75%), and sleep (n = 104; 26%). Parents were then asked if, knowing what they know now, there were behaviors that their child showed that they did not recognize as autism symptoms, but now know are part of autism. Two-hundred sixty-five parents (67%) selected yes. Consensus review of their responses identified 30 different categories of symptoms described by parents (see Supplemental Table 1 for categories and frequency counts).

Diagnostic timing.

Most families saw 1-2 professionals before receiving an ASD diagnosis (n = 247, 62.5%). About one-third saw 3-4 professionals (n = 122, 30.9%) and 25 saw more than five (6.6%). When asked about diagnostic timing, 114 children (28.8%) were diagnosed before 24 months of age. Another 122 (30.9%) were diagnosed between ages 25-36 months, with the remainder (n = 149, 40.2%) diagnosed after age three years. One-hundred thirty five children (34.4%) receive a different diagnosis prior to their ASD diagnoses, as seen in Table 4.

Table 4.

Diagnoses received prior to ASD.

Diagnosis	n (%)
Developmental diagnoses
Speech-language delay or language disorder	88 (22%)
Developmental delay or intellectual disability	88 (22%)
Mental health diagnoses
ADHD	20 (5%)
Oppositional Defiant Disorder	4 (1%)
Anxiety disorder	4 (1%)
Bipolar disorder	1 (.25%)
Medical diagnoses
Genetic disorder	4 (1%)
Epilepsy	3 (.75%)
Poor feeding or weight gain	3 (.75%)
Hearing loss	1 (.25%)
Sensory input diagnoses
Sensory processing disorder	8 (2%)
Auditory processing disorder	1 (.25%)

Qualitative responses: Race and Bias

When asked if race or ethnicity impacted their own diagnostic experiences, 285 (72%) of respondents selected no, whereas 111 (28%) selected yes (four respondents left this question blank). Only 3 families in this sample indicated that their diagnostic experience was impacted by their immigration status.

Racial or Ethnic Family-Provider Congruence.

Eleven parents (2.75%) commented on having providers from the same racial background. Some parents sought out racially congruent providers. As one mother wrote, “I seek out [people of color] care teams so I don’t have white primary providers.” When frustrated by the lack of action on the part of a provider of a different racial background, another mother said, “We ended up switching to a black pediatrician instead. She immediately…set us up with the … clinic to get his diagnosis.”

Racial or Ethnic Family-Provider Incongruence.

Sixty-five parents (16.3%) indicated that cultural differences between themselves and professionals affected the diagnostic process. One mother wrote, “There is always going to be cultural differences between people if they are not the same race.” Twenty-one respondents (5.25%) shared their experiences working with providers of a different racial background. One mother wrote that she “felt like the pediatrician did not have much experience with black children.” Parents shared that some providers “were unfamiliar with cultural differences.” Differences in racial background also impacted how some parents perceived information about difficulty accessing care. Specifically, one mother noted, “Having a Dr not of my race give me a diagnosis then discuss how costly [care] is didn’t empower me.”

Structural racism.

Eighty-eight families (22%) offered examples of racism and discrimination experienced at different points in their children’s care. As one mother noted, “The black community struggles with physicians and other medical staff all the time. An understanding of our past when it comes to medical staff and health care along with compassion can go a long way.” Several parents expressed frustration that their race kept their children from receiving adequate care. One parent remarked, “I believe if I was a white parent when I brought my concerns to the pediatrician he would have sent my son for testing sooner.” Families reported that providers seemed to be “passing off behaviors that black children display as ‘a black thing,’” assuming families wanted to “use [their children] to gain money from the government,” or “expect[ing] black kids to naturally be wilder and have behavior problems.” Parents also remarked on culturally incompetent aspects of the evaluation process, with one mother asking for “an evaluation that used culturally relevant activities and toys. We were in doubt about whether or not he truly had autism for a while because we felt the activities used were not ones he engaged in at home and hence may have been unfairly disadvantaged.”

Familial and Cultural Barriers to Care

Family relationships.

Fifty-three parents (13.25%) talked about the impact of family relationships, including spousal and parental support (“Autism has been difficult for our families to accept…they look at it as something he will outgrow;” “Without the support and partnership of my husband this process would be virtually impossible”). Some of these parents wrote that the autism diagnosis has created tension between family members: “It has caused lots of arguments with my mother and debates with my family about using alternative methods of discipline.”

Cultural Differences in Disability Attitude.

Forty-eight parents (12%) offered input on how the concepts of disability and autism might differ for some families in their communities relative to families in other groups. One mother responded, “With the Black community it’s hard for us to accept that our child is different.” Some noted perceived differences in parenting strategies, with one remarking that “many people in the black community feel as if ‘a good spanking’ will fix that but that’s not totally true.” This also related to parenting guilt, with one mother remarking in hindsight that “I thought I just had to be…stricter on him. In our cultur[e] if a child misbehaves it is because the mother is not being strict enough.”

Stigma.

Twenty-one parents (5.25%) talked about shame and stigma associated with disabilities. They talked about the need “to erase the stigma of being special needs” and “providing a place where the parents don’t have to feel alone, shame, or at fault for their child’s disorder.” When thinking about their communities and disability, one mother wrote that it is important to “understand for Black parents it’s another label on our child black and autistic etc.”. Some felt that this stigma kept families from seeking help: “We need to remove the stigma around getting help for our children.”

Provider-level Barriers to Care

Diagnostic Delay.

Twenty-one parents (5.25%) said that their primary care providers advised that they not pursue an early diagnosis but rather take a “wait-and-see” approach. This included monitoring for maturation (“Her Dr kept saying she would grow out of everything”), a reluctance to diagnose (“He wanted to wait him out and not label him”) and artificial set points for seeking evaluation (“They [said] they normally wait until the children are 4 years old to send out for diagnosis”). Another 88 families (22%) said their providers issued an incorrect diagnosis (“They pushed the DD diagnosis due to it was easily seen,”) attributed the behavior to age or sex (“His behavior was seen as a lack of exposure or slow developmental delay that is ‘common in boys,’”) or disagreed with autism concerns (“She said he was too smart to have Autism.”)

Lack of pediatrician engagement.

Families offered information about pediatrician engagement during the diagnostic process, immediately afterward, and over the long-term. Fifty-seven parents (14.25%) reported that pediatricians did not mention or endorse a diagnosis (“He knows they have autism, but it’s never talked about or mentioned”). Another 31 (7.75%) said that pediatricians did not help with post-diagnostic care (“They didn’t suggest further diagnostics or family support at that time”), with one mother commenting, “I just wish they would have followed up with me.” Others described pediatricians as barrier to be circumvented: “They didn’t help at all, I had to go around them.”

Systemic Barriers to Care

Service access.

Sixteen parents (4%) identified barriers related to work/income and family structure that impeded access to autism-related care. One wrote, “We are a black low income family using assistance from the state (Medicaid). It took a long time to get [a diagnostic] appointment.” Another wrote, “I do personally know some people whose diagnosis was delayed because of lack of financial resources and because of stereotypes.” Other families talked about stressors for working parents (“That means more time taken away from those who need to work”) and single parent households (“Life of a child with autism is more difficult when they have a single parent with no support”). This also applied to recommended therapies. One mother wrote that “being a single working mother my schedule and finding a right [ABA provider] has been tough,” and another said that the field needs “more therapy options for parents that have to work full time.”

Health Education.

Forty-one parents (10.25%) indicated that they did not pursue a diagnosis because they did not know what autism was and that targeted autism education might help other families in the community. As one mother wrote, “I never knew about autism growing up until my child was diagnosed.” This was echoed by another comment: “I didn’t know it was autism. I just knew something wasn’t right.” Other parents wrote about a lack of ASD education and awareness in their community, with one noting that “information in general [about autism] isn’t very public and it really isn’t very public in the black community.” One mother suggested that providers should “let [Black parents] know…autism is relevant in the Black community.”

Facilitators of Diagnosis and Care

Elements of satisfaction with diagnostic process.

Most families (n = 281; 71.3%) indicated that their pediatricians were helpful during the diagnostic process and diagnostic follow-up (n = 255; 64.6%). Thirty-seven parents offered information about ways in which the diagnostic process went smoothly for their children. Satisfaction related to age and speed of diagnosis (“I’m thankful that we were able to get started sooner rather than later with our son”), the support of medical providers (“I felt like the medical system there helped with my concerns,”), and the overall ease of obtaining a diagnosis (“Everything worked out in a timely manner.”) When asked to select as many responses as desired from six choices (decided upon a priori by the research team) to identify what would have made the diagnostic process easier for them, most families endorsed receiving an evaluation faster (n = 204, 51%; see Table 5).

Table 5.

Parent selections of a priori processes to improve the diagnostic process.

Suggested improvements	n (%)
Receive an evaluation faster	204 (51%)
Have professionals listen to concerns sooner	168 (42%)
Receive more support from family members	147 (36.75%)
Have someone explain what autism is	138 (34.50%)
Have professionals raise concerns sooner	132 (33%)
Receive more support from teachers	61 (15.25%)

Helpful pediatrician behaviors.

Parents identified pediatrician or primary care provider behaviors that they perceived as helpful. Forty-three parents (10.75%) expressed appreciation for pediatricians that mentioned ASD as a concern. One mother noted, “She [the pediatrician] was the one who put me on the right path to getting him diagnosed.” Parents also appreciated providers that offered follow-up and long-term monitoring (n = 13; 3.25%) and gave advice and resources (n = 80; 20%), with 169 parents (42.25%) stating that pediatricians helped by providing referrals for evaluation and intervention. One wrote, “Anytime I needed information from [the pediatrician] for the school or any medical benefits she has always been helpful and willing to assist me.”

State early intervention systems.

Twenty-nine families (7.25%) described the important role played by their state early intervention systems, which were accessible compared to a lagging medical system: “I know I did right to initiate the State early intervention program referrals rather than wait for doctors,” and, “Having access to early childhood development agency and not depending on my first pediatrician to [hear] my concerns.” Others reflected on the support offered by its providers, noting that “state developmental programs had helped us through the process.”

Parent Experiences

Emotional experiences.

Seventy-two parents (18%) shared emotional experiences when reflecting on this process for their families. One mother wrote, “The process of learning your child has Autism is one that is already challenging to navigate.” Another said that that upon receiving the diagnosis, in hindsight, “I wouldn’t have [taken] the news so bad. I would not have gotten so upset with her doctor and just listened a little more.” The point of diagnostic confirmation also raised doubts in some parents, with one stating that “I cried after my son’s diagnosis. Not because I didn’t think he could overcome his obstacles but because I didn’t feel I could overcome mine.” The diagnosis made some families feel isolated and anxious: “It’s a tough lonely life, you want what’s best for them, yet you fear what life will be like for them when or if something happens to you.”

Self-blame and regret.

Fifty-one parents (12.75%) offered statements related to regret, grief, or self-blame. Some wished they had not doubted themselves, with one mother stating, “I wish I would have took my concerns more seriously sooner instead of listening to others say nothing was wrong.” Another mother wrote, “I would have fought harder, sooner. I would have forced his doctor to listen to my concerns instead of placating me.” Parents used terms like “follow my instincts” and “listen to my gut.” Other parents expressed self-blame. One mother felt she “did not do as much as she probably should have.” When asked what the medical system could do to better serve families, one mother wanted reassurance that “they we didn’t/couldn’t cause it [our children having ASD].” Another said it is important for families to know that a diagnosis is “no fault of theirs any child could be diagnosed.”

Advocacy.

Despite the challenges navigating care systems and provider relations, 125 families (31.25%) described engaging in self-advocacy to promote positive outcomes for their children. Parents acknowledged that their words and actions had been powerful, noting, “If I didn’t bring my concerns to the doctor no one would of found it out.” Some parents described the importance of educating themselves, with one noting, “I feel like I went about and beyond and researched well enough not to be bulldozed by the professionals.” Several parents changed providers to ensure their children’s needs were met; one wrote, “We then immediately switched doctors and his new pediatrician has been a great support.” Other parents reflected in hindsight that they wished they had taken different or stronger action. When asked what she would do differently, one mother wrote, “Just fought more for what I knew about my child and kept pushing until I got to the right doctors that would listen and show empathy and understanding.” This led to a sense of isolation for one mother, who felt “I was left to do everything myself.” As another parent noted, “It should not be the parent responsibility to raise concern and fight for the diagnoses.”

Suggestions for how the medical system can better support Black and multiracial families

The next questions allowed respondents to engage with our team as experts in the lived experience of obtaining an autism diagnosis for young Black and multiracial children in the United States. Content related not only to that lived experience, but also allowed opportunities for free response regarding existing care systems. We analyzed those qualitative responses and identified themes related to how the medical system can provide better care to racially diverse families of children with diagnosed or suspected ASD.

Affordable and accessible therapies and care.

Eighty-five parents (21.25%) wrote about the need for more accessible and affordable therapies, educational settings, and family supports. Many responses raised issues of disparities in access as opposed to other groups, with one mother noting, “Black kids who are autistic deserve the same level of care and treatment.” Another mother was more specific, stating, “There are still more programs for those who are diagnosed with autism, middle upper class, white children than those who are lower class [people of color].” Families noted that therapeutic centers tend not to locate themselves in certain neighborhoods: “There are few resources in the typical black neighborhoods. It’s sad,” or, “More therapy locations in the neighborhood that they live in and more public schools that’ll take kids with disabilities.” Another response said, “There are ABA companies all over my community. There are zero in communities of color.” Several responses talked about a lack of providers as a barrier to care: “I’m told basically that there are no providers available.” Another remarked that “if…early intervention only gives 2-3 sessions a week…that is not enough for a child that is severe.”

Insurance coverage.

Thirty-one parents (8.5%) mentioned insurance coverage as a barrier to care. One mother recommended that providers “work with Medicaid to pay for autism services and not send families that have children with autism to mental health agencies.” Another recommended that “all therapies that help children with autism should be available to children and families on Medicaid as part of the plan for improving autism.” Some answers also addressed a lack of financial supports: “More options for assistance for over the poverty income families,” and, “Financial packages to supplement care for parents who need ABA but are making more than what Medicaid will cover.”

Representation.

Twenty-eight parents (7%) noted the importance of Black and multiracial representation amongst diagnosticians, therapy providers, and parent support groups. As one mother wrote, “I want drs and help that resemble me and can culturally identify with me.” Another mother noted the importance of providers “who share the same background and have true understanding of black health and issues,” with another asking that we “bring more people in the field of service that looks like me.” One parent requested increased visibility of ASD in her community: “Please make Autism in Black children more public. It seems like it’s being hidden.” Families also wanted better representation when seeking out therapies, with one reply stating that “we need more black providers as far as ABA therapists who can relate and understand black families.”

Better provider education.

Thirty-five parents (8.75%) asked for better provider training not only on autism, but also on cultural competency and implicit bias. One mother advised that she wishes there was “more cultural competence,” with another echoing her by stating “there really should be some cultural competency that professionals have in order to understand what is considered ASD behaviors in African-American children.” As written in one response, “I think it would be helpful if providers recognize any personal bias they may have and try to see concerns through the lens of the patient’s cultural belief system.” Responses also said that “general pediatricians need to seek more education in the early signs” of ASD and that “many pediatricians lack the experience of dealing with autistic children.” Parents asked for broader training initiatives, with one asking that “medical systems can start training staff in particular communities what Autism is & the signs so more individuals can be aware of it,” and another asking for “educated providers especially in the emergency room about autism and behaviors of a child with autism.”

Better parent education.

One of the most frequently mentioned suggestions (n = 131; 32.75%) for improving care for families was giving parents better information. Many parents said that they had never heard of autism and did not know what to watch for or how to talk about it, which put them at a disadvantage when trying to express developmental concerns to their pediatricians. Responses reflected the need for “educating people about symptoms to watch for and what to do if they notice them in their children” and that the medical system “should inform ALL parents of the possibilities of Autism.” Some parents wrote that they wanted “pamphlets in pediatric offices,” “more information and questions during pediatrician visits,” and that “It should be a regular practice for pediatric doctors to inform all parents about autism.” Other ideas related to targeted and formal efforts in the community: “Hold seminars. Make it more aware to the black community.”

Act earlier on diagnostic concerns.

Thirty-five responses (8.75%) requested earlier detection, especially provider openness about any concerns. Families not only asked for providers to “encourage early detection” and “screen earlier,” but also to “let the parents know that they are concerned about things. Asap.” One mother asked for “direct honesty. A professional to tell me what milestones are not being met and what that means.” They asked that providers “start the process earlier” and push intervention sooner: “Help us with early intervention sooner,” and “Don’t wait until early intervention is too late.”

Listen to parents.

Eighty-seven responses (21.75%) asked for providers to listen to them, many of which were typed in all capital letters. Responses were direct (“Listen. Listen. REALLY listen”), implied that providers did not trust or believe parents (“Start believing us”), and stated that providers did not take concerns seriously: “Take the time to actually listen to concerns instead of assuming we are looking for attention, seeing something that isn’t there or just ignoring the concern all together.” Many responses also felt that racial bias played a role in provider behavior. One mother wrote, “Assume that parents are the best advocates for their child regardless of race or ethnicity.” Others were more straightforward: “LISTEN TO WHAT WE TELL YOU!!! We know our kids despite what society says about black parents not caring as much!” Parents wanted their expertise to be valued: “Parents know more about our kids than any other human being.”

Discussion

Our study reflects and expands upon existing knowledge in five important ways. First, it provides parent-informed characteristics of early ASD that inform our understanding of how Black and multiracial parents perceive developmental risk. Second, survey responses identify cultural differences in disability knowledge and attitudes that may influence the way in which systems approach screening and identification. Third, it adds to the growing evidence base that racism and bias can affect the diagnostic pathway. Fourth, it underscores the critically important role played by pediatrician behavior in not only the early identification of autism, but also supporting parents through the diagnostic period and beyond. Finally, it offers suggestions for what the medical system, and specific providers, can do to improve culturally competent care for Black and multiracial children with ASD and their families.

Developmental monitoring is an important but imprecise process that relies heavily upon the expertise of the treating provider as well as parental knowledge. Existing milestone checklists for general developmental monitoring show significant variability not only in skills assessed, but the corresponding age groups assigned for skill attainment (Wilkinson et al., 2019). When introducing complexities of cultural expectations regarding social interaction and communication, it follows that whether or not behavior is considered “typical” or “concerning” may depend heavily upon the socio-cultural expectations and experiences of the family (Kärtner et al., 2020). For toddlers undergoing autism screening, this may include factors like the types of social games played, family size and composition, childcare arrangements, play materials available, urbanicity of housing, expectations for participation in community or religious activities, and the myriad other everyday occurrences that shape parental expectations of “normal.”

Many families in our sample retrospectively reported developmental concerns that aligned with core diagnostic areas, including language delays, sensory sensitivities, and repetitive body movements. Not unexpectedly, however, the phrasing and content of those concerns did not always align with how community providers are trained to screen for autism (Donohue et al., 2019). More research is needed into cultural variations in how autism symptoms are noted and described by families; parents describe developmental concerns in different ways, based upon their own culturally dependent experiences and parenting priorities, and providers cannot assume that autism is not present because it is not mentioned in a direct or recognizable way. As described by Cascio et al. (2021) in their review of autism and intersectionality, autism does not occur in isolation of the many other variables that contribute to our diverse identities.

Many families were forthcoming with their pediatricians about specific autism concerns, but still faced multiple barriers to being heard and moving forward. Parents from other racial, ethnic, and linguistic backgrounds, including White and Latinx parents, also report negative experiences of the complex autism diagnostic pathway (Coffield et al., 2021; Locke et al., 2020; Rivera-Figueroa et al., 2022). Within this context, the structural racism that Black and multiracial families experience when accessing care in the United States (Broder-Fingert et al., 2020; Dababnah et al., 2018; Schnierle et al., 2019) may place them at increased risk of negative interactions with the diagnostic system. Echoing other work (Burkett et al., 2015; Emmanuel et al., 2022; Straiton & Sridhar, 2021), almost one-quarter of families in this study felt that race negatively impacted their experiences, including provider ignorance about racial differences or sense of discomfort working with their children due to discrepant racial backgrounds, embedded structural racism within primarily White medical systems, and examples of racist sentiment or behavior experienced as part of seeking help. They wrote about a lack of representation, not only amongst providers but also within the broader autism communities and body of knowledge. Given the negative long-term consequences of delayed diagnostic identification (Constantino et al., 2020), it is critically important that screening providers understand how these factors can influence a family’s interactions with the healthcare system and its embedded tools and processes (Burkett et al., 2015; Straiton & Sridhar, 2021).

Other barriers to diagnosis were multifold and included familial and cultural factors, such as unsupportive family members, attitudes toward disability within communities, and perceive stigma related to autism and its parenting implications (Burkett et al., 2015; Rivera-Figueroa et al., 2022; Shaia et al., 2020); provider barriers, including a “wait and see” approach to developmental monitoring (Monteiro et al., 2019), the need for multiple evaluations, and a lack of pediatrician support throughout the diagnostic process; and systemic barriers, including financial or geographic limitations on care access and a lack of knowledge about autism symptoms. Many of these themes mirror those identified in the qualitative research review of Singh and Bunyak (2019) as well as qualitative work by Stahmer et al. (2019), who documented that relative to White participants, Black parents of children with ASD more often reported that their concerns were dismissed, that autism symptoms were blamed on poor parenting, that cultural differences in disability conceptualization impacted ability to seek diagnosis. Many parents in our study also wrote about distress leading up to and upon hearing the diagnosis; regret and self-blame, particularly related to not being able to advocate and get the diagnosis sooner, and positive experiences of self-advocacy when reflecting upon steps taken to ensure support for their children. Persistent self-blame or despair in response to diagnosis have been linked to poor maternal well-being and increased caregiving burden, with increased levels of acceptance over time correlating with better mental health outcomes (Da Paz et al., 2018). If Black and multiracial parents systematically receive less information or support within the diagnostic time period, it may have ripple effects on family wellbeing long past that critical window, offering less opportunities for advocacy and feelings of self-efficacy.

In the final free response survey item, in which parents were asked what the medical system could do differently to better serve Black families, replies resoundingly centered on listening to their concerns and trusting their expertise. Most parents reported that they were the first ones to notice something different about their children, usually before the age of 24 months. They identified geographic and financial barriers to diagnostic as well as post-diagnostic care, lamenting that many Black or multiracial as well as rural communities lack providers or therapy centers at all, much less centers that accept their insurance. These themes reflect barriers identified in a recent review of qualitative literature conducted by Wallace-Watkin et al. (2022), who described a need for accessible, culturally and linguistically competent providers in geographically diverse areas, ready to provide services across flexible pathways based upon family preference. Other work has highlighted the importance of accessible care, not only based upon financial and geographical components but also embedded parental education about the process and next steps, to outcomes such as family quality of life (Rivard et al., 2022). Parents wanted providers to act earlier on concerns and to actively educate parents about autism from early ages. They also wanted more information about autism and the screening and diagnostic process, including regular administration of questionnaires and promotional materials like brochures. This surprised our team, given recommendations for universal screening (Johnson & Myers, 2007) and national campaigns such as Learn the Signs, Act Early (Daniel et al., 2009), and emphasizes that these programs, although important, are not reaching every family or practice.

This study has several limitations. It is based upon a national sample of parents with the resources and willingness to participate in genetic research programs. Our participants were willing and able to engage in this type of medical research, and undoubtedly excluded families who decline to participate in similar studies (Kaiser et al., 2022). It did not include other demographic information that might relate to autism awareness and access to resources, such as parental education level or income. Results represent a snapshot of Black or multiracial, English-speaking families in the United States, and are not meant to represent the universal feelings or experiences of the multiple language, cultures, or attitudes of this diverse group.

In spite of these limitations, our findings add to a strong and growing body of literature not only raising awareness of the impact of race on access to pediatric autism care, but also sharing invaluable qualitative insight from families about how to make these processes more accessible, equitable, and culturally competent (Diemer et al., 2022; Stahmer et al., 2019). Parents emphasized topics such as the importance of open access to information and services; of providers that not only listen to, but also act on parental concerns; of representation within each facet of the autism community, and of the impact of diagnosis on emotional wellbeing and family relationships. Our findings support a multifaceted approach that involves providers, parents, service providers, and communities in recognizing and supporting autism in its varied manifestations. Future work should continue to investigate families’ experiences to create more accessible and culturally competent pathways to autism diagnosis and care.