Workforce perspective on racial and ethnic equity in early childhood autism evaluation and treatment: “The cornerstone of everything we do”

Abstract

Black and non-White Latinx children have historically been diagnosed with autism at a later age and with more significant impairments than White peers. This study aimed to gather insights from members of the autism service provider workforce on current barriers and facilitators to achieving equity in early childhood autism evaluation, referrals, and treatment. We employed a qualitative descriptive design using semi-structured virtual focus groups with autism experts in North Carolina (N = 26). Our final sample included pediatric clinicians across disciplines, researchers, family/caregiver advocates, and policymakers/government representatives. We identified four overarching themes representing challenges to equitable autism service provision: (1) workforce composition and recruitment concerns, (2) workforce capacity and accessibility concerns, (3) workforce compensation obstacles, and (4) COVID-19 pandemic adaptations’ impact. Our findings demonstrate the need for improved workforce diversity, autism-specific education, adequate compensation, and interventions to address burnout. To remediate existing barriers to equity, diversity in recruitment across training levels, cultural awareness, autism education for all pediatric providers, and partnerships with caregivers as experts must be prioritized. These investments in the autism workforce will allow its interdisciplinary professionals to better meet the needs of children and families from historically marginalized communities and achieve equitable early childhood service provision.

Lay abstract

Black and non-White Latinx children tend to receive autism diagnoses later in life and with a higher degree of impairment than White children. The purpose of this study was to learn what is currently helping as well as preventing Black and non-White Latinx children from getting access to autism evaluation and services. We held virtual interviews with 26 experts who work with autistic children and their families, including clinical providers, researchers, advocates, and policymakers/government representatives. From these interviews, we identified four themes that have an impact on equity in autism services: (1) who makes up the workforce, (2) workforce capacity and accessibility, (3) workforce payment structure, and (4) changes due to the COVID-19 pandemic. These findings show the need for improved workforce diversity, autism-specific education, payment structures, and additional support for workforce members to avoid burnout. To make childhood autism services more equitable, diversity in recruitment across training levels, cultural awareness, increased autism education for all pediatric providers, and partnerships with caregivers as experts must be prioritized. These investments in the autism workforce will allow professionals in the field to better meet the needs of children and families from Black and non-White Latinx communities and achieve equity in early childhood autism services.

Keywords

autism spectrum disorders ethnic equity policy pre-school children professional development qualitative research racial equity workforce

Introduction

Autism is a developmental disability characterized by social communication impairments and restricted, repetitive behaviors that is estimated to impact 1 in 36 children (Maenner, 2023). Children from Black and non-White Latinx racial and ethnic minority communities have historically been diagnosed with autism at a significantly later age and with more significant impairments than their White peers (Angell et al., 2018). Centers for Disease Control and Prevention estimates show that racial and ethnic disparities persist in early identification and diagnosis of autism (Maenner et al., 2020): the median age of diagnosis for White children was 42 months, compared to 48 months for Black children. These disparities cascade in subsequent referral and intervention processes (Smith et al., 2020; Straiton & Sridhar, 2022).

The complex nature of autism requires an interdisciplinary team of primary care providers, psychologists, psychiatric providers, social workers, and therapy specialists (occupational, physical, behavioral, speech-language pathology). For families and children of racial and ethnic minorities, obtaining a culturally representative network of care is particularly difficult as the autism service provider workforce experiences a shortage of professionals (Rivkees & Opipari, 2018) and is majority White (Bridgemohan et al., 2018). Recent research into barriers experienced by non-White caregivers of autistic children has revealed significant gaps in the provision of culturally responsive services, prioritization of patient–provider partnerships, recognition of practical challenges in accessing autism services, and system-level advocacy initiatives (Stahmer et al., 2019; Straiton & Sridhar, 2022). Additional research shows that racial concordance improves health outcomes for Black and Latinx patients (Jetty et al., 2022). Therefore, the current state of the autism service provision pathway continues to put Black and Latinx children and families at a disadvantage. In addition, the COVID-19 pandemic highlighted preexisting gaps within the autism service provider workforce by exacerbating challenges related to provider capacity, geographic distribution, access, and burnout (Baweja et al., 2022; Kryszak et al., 2022; Wagner et al., 2021).

Previous research on equity within early childhood autism service provision has focused on family-level perspectives, but limited research has examined equity barriers at the workforce level and within the COVID-19 pandemic context. This study aimed to gather insights from members of the autism service provider workforce on current barriers and facilitators and identify solutions for achieving equity in early childhood autism evaluation, referrals, and treatment.

Methods

Study design

We employed a qualitative descriptive design (Sandelowski, 2000) to learn relevant stakeholders’ insights on equitable autism service provision. This design allowed for a comprehensive understanding of participant experiences while remaining true to the participants’ direct accounts of these experiences and events (Sandelowski, 2000). We received Institutional Review Board (IRB) approval from the Duke University Institutional Review Board (protocol 2021-0484) and then purposively recruited participants of varying races, ethnicities, genders, professional sectors, and geographic locations to ensure diverse perspectives. Of the 67 stakeholders we contacted via email, 27 accepted offers to participate (40.3%), and 26 completed focus groups (38.8%).

Participants

We recruited participants via professional networks, web searches, and snowball sampling (in which participants nominate other potential participants). The final sample (N = 26) included pediatric clinicians (licensed social workers, psychologists, psychiatrists, speech language pathologists (SLPs), and pediatricians), autism researchers, autism family advocates, policymakers, and government agency representatives. Based on the information provided over the course of focus group discussion, at least 12 of these participants held an administrative role (e.g. director) within their organization at the time of participation. Table 1 summarizes participant characteristics collected via a demographic survey completed by all but one participant (N = 25). Notably, we did not specifically recruit family members as to avoid a potential power imbalance within the focus groups, but survey responses revealed that five participants (20%) self-identified as a parent to an autistic individual, and an additional nine participants (36%) self-identified as having non-parent familial or personal relationships with autistic individuals. All participants were de-identified and given a participant key based on shared focus group number and an individual letter (e.g. participants in focus group 1: participant 1A, 1B, etc.). Each quote is referenced with each participant’s key and occupation to provide context.

Table 1.

Characteristics of focus group participants (N = 25*).

	n	% (of N)
Sex ^a
Female	20	87
Male	3	13
Race
Non-Hispanic White	16	64
Non-Hispanic Black	8	32
Asian	1	4
Highest education completed
Some college	1	4
Completed college	4	16
Some graduate school	1	4
Completed graduate school	19	76
Sector **
Clinical medicine (MD)	4	16
Psychology	6	24
Social work	4	16
Research	3	12
Advocacy	5	20
Policy and government	4	16
Community organization	2	8
Other	9	36
Geographic service area ^b
Statewide	11	44
Employment affiliation ^c
Public clinic, hospital, office	3	12
Private practice	4	16
College or university	15	60
Accepted insurance ^d
Medicaid	12	48
Years in the autism field
1–5 years	2	8
6–10 years	4	16
11–15 years	7	28
16+ years	12	48
Relationship to an autistic individual
Parent	5	20
Non-parental familial or personal relationship	9	36

Missing data from two participants.

Missing data from one participant.

Missing data from three participants.

Missing data from 11 participants due to insurance not being relevant to role.

One focus group participant failed to complete the demographic survey. Percentages calculated based on number of participants who completed the survey (N = 25) to allow for comparison.

Participants could select multiple options on each survey question or decline to answer select survey questions.

Not mutually exclusive.

Data collection

We utilized a semi-structured interview guide (Supplemental Appendix A) with four primary domains:

Early childhood autism diagnosis in North Carolina;

Professional training, staffing, and workplace environment;

Disparities in autism service provision;

Potential solutions for increasing equitable autism service provision.

Seven focus groups occurred virtually via Zoom between July and December 2021. Between 2 and 6 professionals within the field of autism service provision attended each group. The groups were semi-structured in nature and were led by two researchers. In each focus group gathering, one researcher facilitated discussion based on a semi-structured interview guide (Supplemental Appendix A) and the other researcher took notes on the resulting discussion. Audio from each group was recorded and transcribed verbatim. Transcripts were reviewed and edited to ensure accuracy. Prior to each focus group, participants completed a survey (Supplemental Appendix B) regarding their demographic information, educational history, professional experience, and current role.

Analytic approach

We first used rapid qualitative analysis for health services research (Hamilton & Finley, 2019; Taylor et al., 2018; Vindrola-Padros et al., 2020), followed by line-by-line coding (Hsieh & Shannon, 2005) for content analysis (Sandelowski, 2000; see Figure 1 for additional details). We then categorized focus group material into a rapid analysis matrix reflecting the focus group question domains. These analyses were reviewed by two other team members for reliability and consensus. Once the team achieved consensus, each matrix was added to a larger matrix organizing rapid analysis domains by column and focus groups by row. Once focus groups were complete, team members evaluated this matrix for common findings and major themes.

Figure 1.

Data analysis approach.

For the content analysis phase, we used NVivo 12 (QSR International, Melbourne, Australia). Team members developed an inductive codebook and revised throughout analysis. All codes were defined (see final codes in Figure 1), and each code, category, and subcategory were characterized with exemplar quotes (Table 2) (Hsieh & Shannon, 2005). To ensure consistency and accuracy were achieved in coding, all data were coded by two different team members, consensus was reached, and an audit of all coding and categorical decisions were preserved throughout analysis. Thematic review of the final focus group demonstrated that data saturation was achieved, as no new findings were identified (Given, 2008; Saunders et al., 2018).

Table 2.

Thematic analysis and exemplar quotations.

Theme	Exemplar quote
Workforce composition and recruitment concerns contributing to inequity	“[Black families] are not receptive . . . [we’d] be more receptive, if it’s coming from someone who looked like us, or who can understand our struggles.” (Participant 4B, founder of parent support organization, parent advocate)“We’re doing quite a bit in terms of trying to build the pipeline at the high school undergraduate, and post-doctoral level.” (Participant 1A, psychologist, researcher)“. . . not all pediatricians . . . are as responsive as we would like them to be when it comes to families of color . . . part of it is practitioner education and looking at how we train our doctors, teaching them to be more culturally aware.” (Participant 6C, family support specialist and service coordinator)
Workforce capacity and accessibility concerns contributing to inequity	“There [is] a very small pool of people . . . that they feel competent in making autism diagnoses . . . we just don’t have enough people.” (Participant 2C, developmental-behavioral pediatrician, researcher)“. . . in the state of North Carolina to see a developmental behavioral pediatrician, [families] must drive somewhere between 20 and 102 miles.” (Participant 1C, general pediatrician)“No child should have to . . . have their life regulated by zip code.” (Participant 6A, policymaker, advocate)
Workforce compensation obstacles including billable time and reimbursement	“. . . we certainly don’t go into the field of clinical psychology for the money, but you are a clinical provider . . . that accepts Medicaid . . . to reduce some of these disparities. It’s really a big amount of work, where the financial reward does not necessarily meet.” (Participant 3B, psychologist, researcher)“I think that’s why a lot of providers unfortunately are starting to just take private pay,” they continued, “and then only the rich people are getting evaluations and then the waitlist[s] at other places are super long.” (Participant 3C, psychologist, researcher)“It’s just challenging to do the amount of work for what insurance will reimburse or what Medicaid will reimburse for our time . . . It’s kind frustrating because you want to serve these families and yet there are barriers put up all around.” (Participant 3B, psychologist, researcher)
COVID-19 pandemic adaptations’ impact on workforce	“. . . We still can’t use at the (Autism Diagnostic Observation Schedule (ADOS)), which is the gold standard . . . because we have to have a mask on and we can’t do the ADOS with a mask.” (Participant 7B, psychologist)“I . . . had a [virtual] case last week where I was not 100% sure about autism . . . I want this child to be evaluated in person.” (Participant 3C, psychologist, researcher)“At this phase of the pandemic . . . there’s like the great resignation happening . . . burnout is part of that . . . It’s just been a really long, difficult 18 months . . . the context of the time that we’re living in is impacting our clinical team as well.” (Participant 3A, child psychiatrist, researcher)

Community involvement

Community providers and family members of autistic individuals were consulted from the conception of the study. Although family members were not intentionally recruited to be later participants, we wanted to ensure that all materials were sensitive to lived experience of autism and therefore sought out feedback during initial stages of study design. Providers and family members gave feedback during the drafting and finalization of the semi-structured interview guide used in the virtual focus groups and the demographic survey distributed to participants. All materials were then adapted based on subsequent responses. Community providers and family members assisted in the snowball sampling of research participants for the duration of the virtual focus groups. Due to the qualitative nature of this study, research results were gleaned directly from community provider and family participation in the focus groups. Additional time was allotted at the conclusion of all focus groups to ensure that all participants had the opportunity to voice desired contributions.

Results

We identified four themes impacting the equity of autism service provision to young children and their families in NC: (1) Workforce composition and recruitment concerns, (2) Workforce capacity and accessibility concerns, (3) Workforce compensation obstacles including billable time and reimbursement, and (4) COVID-19 pandemic adaptations’ impact. Although we present these themes as distinctly as possible, we acknowledge and demonstrate their fluidity and interconnectedness. These themes examine the service provision landscape and associated barriers and facilitators to providing equitable care both before and during the COVID-19 pandemic. Across all focus groups, participants described how the early childhood autism workforce struggles with barriers related to representation and diversity, provider capacity and accessibility, and payment and reimbursement structures. Participants explained that achieving equity in early childhood autism service provision is contingent, in large part, on investment in the provider workforce. As one participant expressed, equity “has [got to be] the cornerstone of everything we do” (Participant 4D, family advocate). Additional study findings on caregiver navigation of the autism service provision pathway were also explored through this study (Hurewitz & Scotton Franklin, 2024).

Workforce composition and recruitment concerns

In discussions of workforce composition, participants across all focus groups agreed that “diversity” refers to race, ethnicity, and language. Within the existing early childhood autism workforce, participants described how providers and leadership do not reflect the diversity of the populations that they serve. Many participants (n = 11) characterized their workplaces as composed of mostly White individuals, while only five participants stated that their workplaces are actively implementing changes to ensure a diverse workforce. One participant underscored this lack of diversity, stating that “speech pathology is 97% middle class White women” (Participant 4E, speech-language pathologist, researcher). Participants (n = 7) shared that a paucity of Spanish-speaking providers leads to consistent difficulties establishing trust and understanding the nuanced experiences of Spanish-speaking families. They explained how this contributes to delayed or absent downstream referrals, even when interpreter services are present. Participants also highlighted that even in diverse workplaces, there may be racial and ethnic disparities related to roles and responsibilities. For example, one participant shared how “the frontline staff are pretty diverse, but then as you go up in leadership, [there is] less diversity” (Participant 7B, psychologist).

Participants explained that this hierarchical diversity distribution in the workforce contributes to weaker rapport between the patient, family, and provider. One parent advocate explained, “[Black families] are not receptive . . . [we’d] be more receptive, if it’s coming from someone who looked like us, or who can understand our struggles” (Participant 4B, founder of parent support organization, parent advocate). Another participant, referring to Latinx families’ experiences, described “this distrust . . . often it’s related to immigration issues and status” (Participant 2C, developmental-behavioral pediatrician, researcher). Participants provided these examples of hierarchical diversity distribution as another obstacle, increasing the likelihood that Black and Latinx families may be unlikely or unwilling to seek out available autism services. Participants emphasized the need for representative providers at all levels of the workforce to help mitigate distrust and poor rapport.

Participants suggested several ideas as to how educators and instructors can reduce structural barriers to training that may support diversity efforts in the autism service provision workforce. A common suggestion was to prioritize diversity as a pillar of both student and professional development. One participant emphasized the need to build the pipeline at the high school, undergraduate, and post-doctoral level[s] (Participant 1A, psychologist, researcher). Another similarly discussed the need to prioritize diversity in training earlier so that the field can “[build] up the pool [of potential providers] . . . who can better represent the patients . . .” (Participant 2C, developmental-behavioral pediatrician, researcher). Participants also emphasized the importance of graduate programs shifting toward holistic admission processes and away from processes that disadvantage candidates from historically marginalized communities. One participant noted, “barriers like the GRE that we know are biased against bilinguals, women, and [individuals with] low socioeconomic status . . . it doesn’t predict whether you’ll be a good clinician” (Participant 4E, speech-language pathologist, researcher).

When discussing barriers to recruiting diverse candidates for entrance into the autism service provision workforce, participants also emphasized inclusion of cultural awareness, responsiveness, and humility trainings in pre-professional, professional curricula, and continuing education. The purpose of such inclusion is to address the disproportionate misdiagnosis of behavioral disorders in children from racial and ethnic minorities that results from cultural unawareness. A specialist at an interdisciplinary family support program expressed

. . . not all pediatricians . . . are as responsive as we would like them to be when it comes to families of color . . . part of it is practitioner education and looking at how we train our doctors, teaching them to be more culturally aware. (Participant 6C, family support specialist and service coordinator)

However, these changes may be only part of what is needed to bolster the autism workforce. “I always wonder how much of this is a chicken and egg question . . . if there was more universal access and people had access to affordable autism-related care,” one participant posited, “would this look like a more attractive field to go into for a more diverse community?” (Participant 3D, policymaker). “I think people are making financial decisions when they’re entering a college and post-grad program,” the participant continued, “I think it means that people of color are less likely to choose certain professions.” This dialogue highlights another substantial workforce concern; there are not nearly enough providers trained to provide care for autistic children and their families.

Workforce capacity and accessibility concerns

Across focus groups, participants discussed workforce capacity obstacles resulting from insufficient knowledge of intellectual and developmental disabilities (IDD) and scarcity of specialized providers. “There [is] a very small pool of people . . . that feel competent in making autism diagnoses,” one participant explained, “. . . we just don’t have enough people” (Participant 2C, developmental-behavioral pediatrician, researcher). Another participant explained how such a limited number of autism service providers markedly impedes downstream services, “I have barely anybody I can refer to” (Participant 2A, social worker). Participants explained that even when services do exist, they tend to be concentrated in urban areas. For example, “. . . in the state of North Carolina to see a developmental behavioral pediatrician, [families] must drive somewhere between 20 and 102 miles” (Participant 1C, general pediatrician). Additional participants expressed feelings of injustice toward resource distribution: “no child should have to . . . have their life regulated by zip code” (Participant 6A, policymaker, advocate). Participants explained burdens related to geographic access are more often placed on Black and Latinx children and families, increasing the difficulty of obtaining necessary autism services. These barriers are further amplified by autism service providers’ typically full caseloads and extensive waitlists.

To mitigate limited workforce capacity, participants discussed strategies to better equip providers with specialized IDD and autism knowledge. Several participants explicitly underscored a need to broaden education of early signs of autism to all pediatricians and family practitioners rather than only specialized providers. Participants also conveyed that commonly employed measures (i.e. the Modified Checklist for Autism in Toddlers (M-CHAT); Robins et al., 2014) often do not address a family’s most prominent concerns. Due to this, establishing a “partnership for early identification . . . for both parents and providers to work together [to share] their expertise [on the child]” is critical for accurate early identification (Participant 6C, family support specialist and service coordinator). Such a partnership allows for a more thorough understanding of a child’s developmental profile. One family advocate explained that families experience ignorance from their providers “ . . . you hear too many times that the pediatrician said, ‘Oh, boys develop later than girls’. Really just sort of callous . . .” (Participant 4C, family advocate). Participants expressed that forming a caregiver–provider relationship that centers caregiver concerns would better support the identification of factors related to elevated likelihood and early signs of autism. However, participants also shared that challenges with current compensation and reimbursement mechanisms impede such early identification efforts.

Workforce compensation obstacles

Participants expressed how reimbursement mechanisms and regulations make it difficult for many providers to remain invested in their clinical priorities: “we certainly don’t go into the field of clinical psychology for the money . . . really a big amount of work, where the financial reward does not necessarily meet” (Participant 3B, psychologist, researcher). Other participants echoed this sentiment: “. . . somebody can go in for a simple medical procedure and then the doctor gets reimbursed . . . but we get an autism evaluation, and it does not get reimbursed.” “I think that’s why a lot of providers unfortunately are starting to just take private pay,” they continued, “and then only the rich people are getting evaluations and then the waitlist[s] at other places are super long” (Participant 3C, psychologist, researcher). Such a dynamic also has a clear impact on family–provider trust (Hurewitz & Scotton Franklin, 2024). Another participant added how they investigated private practice opportunities in hopes of increasing their reimbursement, but that they recognized the racial, ethnic, and socioeconomic repercussions that such a professional shift would have on their patients and community. “It’s just challenging to do the amount of work for what insurance will reimburse or what Medicaid will reimburse for our time,” the participant emphasized. “It’s kind of frustrating because you want to serve these families and yet there are barriers put up all around” (Participant 3B, psychologist, researcher).

This “obstruction by insurance or non-insurance,” as another participant described it, is a barrier for both patients and providers (Participant 1C, general pediatrician). Variations in coverage may lead to provider hesitation to provide a diagnosis if a child is not able to get follow-up services. Participants reported that provider hesitation can worsen trust issues for Black and Latinx families who approach providers with concerns but do not get directed toward services. This dialogue describes how reimbursement barriers perpetuate racial and ethnic disparities in early childhood autism service provision and increase frustration among providers. This frustration contributes to high rates of burnout and resultant turnover.

COVID-19 pandemic adaptations’ impact

Clinic closures due to the onset of the pandemic drastically redesigned workflow. As opposed to typical in-clinic visits, patients could choose between telehealth and masked in-home visits. Participants emphasized that while these types of appointments have some benefits, such as observing children in their natural environment, they interfered with professionals’ ability to interact with children and families. For example, “we still can’t use the [Autism Diagnostic Observation Schedule (ADOS)], which is the gold standard . . . because we have to have a mask on and we can’t do the ADOS with a mask” (Participant 7B, psychologist). Importantly, participants noted that these adaptations compromised diagnostic certainty: “I . . . had a [virtual] case last week where I was not 100% sure about autism . . . I want this child to be evaluated in person” (Participant 3C, psychologist, researcher).

Providers’ need to see children in person added to already rising caseloads and lengthy waitlists. “There’s high caseloads [during the pandemic],” a participant explained, “and we’re probably as understaffed as I have known us to be in my 16 years of being here” (Participant 7B, psychologist). Another participant referred to staff shortages as the COVID-19-induced “great resignation . . . burnout is part of that” (Participant 3A, child psychiatrist, researcher). Several participants (n = 3) posited that autism professionals with patient-facing roles may face particularly high rates of burnout. These “issue[s] . . . with morale, low pay” lead to “a hamster wheel of turnover” (Participant 4A, policymaker).

Discussion

This study identified multiple workforce-related barriers contributing to inequity in diagnoses and services for Black and Latinx children and families, as well as potential solutions to rectify racial and ethnic gaps in diagnosis and treatment. Notably, participants shared more barriers than solutions, emphasizing the need for further identification and piloting of solutions that will translate to meaningful and sustainable improvement. Barriers included a workforce that does not match the diversity of the populations served, a lack of specialized providers knowledgeable about autism needs, low reimbursement and compensation rates for the volume of work required, and high levels of burnout. Our findings describe how the current reality of autism workforce homogeneity increases caregiver hesitancy to pursue care, the scarcity of providers worsens access issues, low reimbursement contributes to providers’ reluctance to continue serving populations insured by Medicaid, and pandemic burnout contributes to high rates of staff turnover. Results emphasized that while these barriers are widespread, they disproportionately impact Black and Latinx families and the care that they receive. Our findings also illuminated possible solutions to these workforce barriers: increasing workplace-level participation in diversity, equity, and inclusion activities; including cultural awareness, responsiveness, and humility training in professional curricula; training all pediatric providers in IDD and autism; and establishing a partnership with caregivers as experts on their children.

Workforce composition and recruitment concerns

One of the largest obstacles to equitable early childhood autism service provision is the racial and ethnic composition of the workforce. Study participants described how autism service providers and leadership in NC do not reflect the diversity of the many populations they serve. This lack of representation is substantiated by recent data that approximately 33% of NC and US residents identify as Black/African American or Hispanic. In addition, 12% of NC’s population speak a language other than English at home and approximately 22% nationwide (North Carolina: State Language Data, n.d.; U.S. Census Bureau QuickFacts: North Carolina, n.d.-a; U.S. Census Bureau QuickFacts: United States, n.d.-b). Therefore, our participants’ concerns regarding lack of diversity in the workforce in NC are also demonstrated in the nationwide landscape. Despite this diverse population, recent findings reveal that 82.6% of the country’s developmental-behavioral pediatricians and 70.1% of the country’s Board Certified Behavior Analysts (BCBAs) identify as White (“BACB Certificant Data,” n.d.; Montez et al., 2021). Given the shortage of providers in the autism service provision workforce, the small proportion of those that are racially and ethnically representative of the populations that they serve is even more striking.

Another significant way that workforce homogeneity contributes to inequity is through language and communication. For example, between 2011 and 2012, only 10% of primary care pediatricians (PCPs) offered both general developmental screenings and autism screenings in Spanish (Zuckerman et al., 2013). This challenge persisted throughout 2018–2020 when looking at subspecialty providers, as only 19.3% of subspecialty pediatricians reported proficiency in communicating with patients and their families in both English and Spanish (The American Board of Pediatrics, n.d.). Through recommended developmental screening practices, PCPs are one of the main entry points to the autism service provision pathway and have a great impact on whether children and families receive downstream services. Previous research has demonstrated that parent–provider relationships, strengthened through provider advocacy for the patient, are key to increasing access to autism-specific care (Stahmer et al., 2019). Moreover, racial, ethnic, and cultural concordance has been demonstrated to increase patient–provider trust and intent to continue service use, resulting in improved health outcomes (Halbert et al., 2006; Jetty et al., 2022). By diversifying America’s pediatric clinicians and behavioral health professionals, the autism workforce will be much better suited to identify and support diverse communities of young children with developmental needs and their families.

To address workforce composition challenges, participants recommended a deeper examination of structural barriers related to training and mentoring members of the autism service provision workforce. An overarching recommendation was to prioritize diversity and cultural humility as pillars of both student and professional development. Perhaps the most significant method to prioritize diversity is to expand the definition of “predictors of success,” a component of graduate program application review that has historically relied heavily on standardized test scores that perpetuate inequities like the Graduate Record Examinations (GRE) and Medical College Admission Test (MCAT) (Bleske-Rechek & Browne, 2014; House, 1989; Lucey & Saguil, 2020). Across disciplines, graduate programs that work to ensure a “holistic review” process by looking beyond test scores are both creating more diverse cohorts within their respective programs and attracting a more diverse applicant pool in general (Nye & Ryan, 2023; Vick et al., 2018). Educators and autism service providers alike can also work to operationalize diversity, equity, and inclusion initiatives (DEI) for students and trainees. Experts have described that the implementation of DEI programming hinges upon leadership, as individuals in such roles may be able to establish necessary culture change, inspire intentionality, and encourage investment (Raphael et al., 2023). Specifically, the incorporation of DEI goals into professional committees, mentoring initiatives, pipeline programs, and community service partnerships may benefit the autism service provision workforce, but additional research is needed (Raphael et al., 2023).

Workforce capacity and accessibility concerns

Participants emphasized the paucity of providers with autism-specific knowledge, leading to delayed diagnosis and subsequent intervention. There are approximately 10 child psychiatrists, 30 BCBAs, and 69 pediatricians for every 100,000 American children (McBain et al., 2020). The American Academy of Child and Adolescent Psychiatry recommends 47 child psychiatrists per 100,000 children (Axelson, 2019). In addition, national demand for BCBAs increases annually, most recently by 23% (Behavior Analyst Certification Board, 2023), further emphasizing the current shortage. Similarly, while the number of practicing pediatricians continues to increase (Vinci, 2021), the American Academy of Pediatrics notes a stark shortage of developmental-behavioral pediatricians (758 nationwide) for the 19 million children with developmental or learning disorders (Takayama, 2023). Such disciplines are key to meeting the critical developmental and behavioral health needs of families.

These capacity limitations are echoed internationally by both providers and caregivers, highlighting the need for change (Guan et al., 2022; Mazurek et al., 2020). The Extension for Community Healthcare Outcomes (ECHO) framework is an effective model that uses “telementoring” to create accessible training for service providers on complex medical and developmental diagnoses such as autism (Mazurek et al., 2020; Project ECHO, n.d.). The ECHO framework focused on autism has demonstrated increased autism knowledge, screening fidelity, appropriate referrals, and access to care (Bellesheim et al., 2020; Mazurek et al., 2017). Knowledge of autism and timely developmental screenings are key to receiving early diagnoses and necessary services. Therefore, the ECHO framework provides a feasible, scalable way to accelerate access to appropriate care for families without immediate access to a specialized team (Nhung et al., 2021). Other cross-sector education models such as the US Maternal and Child Health Bureau’s Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program and the Goshen Project in Israel are also important for expanding workforce capacity. Such interdisciplinary initiatives may lessen workforce burnout by better equipping general providers, community stakeholders, and caregivers to recognize the nuances of autism service provision through training in developmental, behavioral, and psychosocial contexts and continued investment in professional development initiatives on both national and global scales (Smith et al., 2022; Somekh et al., 2019).

Our participants stressed the importance of caregiver–provider partnerships and the validation of caregivers’ concerns. One of the many strengths of the LEND program is that cohorts include parents, caregivers, and people with developmental disabilities (Reynolds et al., 2015). Many parents and caregivers are well equipped to provide valuable knowledge to pediatric providers as the experts on their individual children. Parental concern is a significant predictor of an autism diagnosis (Ozonoff et al., 2009), but recent research reveals that PCPs were not receptive to Black mothers’ concerns (Dababnah et al., 2018; Pearson & Meadan, 2018). Similarly, Latinx families also face disproportionate dismissal from providers and hear the common “wait-and-see” trope (Coffield et al., 2021), a reality that further perpetuates inequities in early childhood autism service provision. Cross-sector educational initiatives that equip providers, community stakeholders, and caregivers with knowledge about autism paired with cultural humility curricula may simultaneously address provider capacity limitations and disparities in autism service provision waitlists for children and families.

Waitlists resulting from the paucity of autism-trained providers can also be addressed via innovative mobile screening devices. In response to the National Institute of Mental Health’s (NIMH) urge for autism screening methods that are usable in infancy (NIMH RFA-MH-19-120), the Marcus Autism Center of Atlanta, GA, in partnership with EarliTec Diagnostics, Inc., has developed a US Food and Drug Administration–cleared mobile diagnostic device that uses eye-tracking to determine likelihood of autism (510(k) Number K213882). Pilot studies demonstrated that the device could safely and effectively diagnose autism in line with clinician best estimates (Jones et al., 2023). The use of such a device could reduce waitlists by speeding up diagnostic processes, provide objective data to caregivers, and may subsequently lessen feelings of burnout among specialized providers. This technology also has the potential to mitigate trust issues between caregiver and provider by bringing the device to communities rather than requiring families to travel far distances to clinic locations and to move families on more quickly to actionable intervention. However, if the device is poised for implementation in pediatricians’ offices, the power imbalance between professionals and caregivers may still be prominent and must be considered. Future work should investigate and address such limitations and how the caregiver–provider partnership can be strengthened in the context of novel technology.

Workforce compensation obstacles

Our findings identifying how reimbursement mechanisms make it difficult for many autism providers to sustain clinical practices serving diverse populations align with previous research. A recent survey of developmental behavioral pediatricians found inadequate reimbursement and proportion of time devoted to non-reimbursed clinical-care activities to be two of the biggest barriers to providing developmental and behavioral healthcare (Bridgemohan et al., 2018). Autism practitioners across disciplines continue to emphasize how current, subpar reimbursement processes do not allow them to spend enough time with their patients, see as many patients enrolled in Medicaid, or sustain both high-quality clinical and personal lives (Bridgemohan et al., 2018; Carbone et al., 2010; Morris et al., 2019; Unigwe et al., 2017; Will et al., 2013). Autism providers are often reluctant to take on Medicaid patients whose insurance results in lower reimbursement rates, disproportionately impacting Black and Latinx children and families (Broder-Fingert et al., 2020; Zhang & Cummings, 2020).

State insurance mandates and shifts to value-based care (VBC) models offer a promising start to improving compensation and reimbursement mechanisms. It is important to ensure they are curated carefully so that they do not perpetuate barriers to serving families from diverse backgrounds. For providers, the benefit of policy innovation related to reimbursement is tangible: states with mandated reimbursement for autism diagnostic services experienced significant growth in the behavioral analyst and child psychiatrist workforces (McBain et al., 2021). Because autism has such a broad range of clinical presentations, research posits that VBC models are better suited to compensate providers for the different types of care that their unique patients and families require (Frechter et al., 2022). However, VBC models may exacerbate disparities and encourage serving “easier-to-manage patients” over populations with systemic obstacles by rewarding optimal health outcomes (Rubin, 2018). Therefore, as long as outcomes are assessed across racial and ethnic groups, providers may be disincentivized to serve patients of color (Baquero & Parra-Medina, 2020; Rubin, 2018). Payment models must include measures that can parse out “differences in quality vs. . . . patient population” (Rubin, 2018). Continuing to re-imagine compensation and reimbursement mechanisms will position autism service providers to effectively support children and families and bolster the workforce by attracting students and trainees to the field.

COVID-19 pandemic adaptations

Across healthcare settings during COVID-19, the adoption of telehealth necessitated changes in workflow and altered the nature of patient–provider interactions (Jimenez-Gomez et al., 2021; Monaghesh & Hajizadeh, 2020; Srinivasan et al., 2022). While telehealth was critical for minimizing COVID-19 infection, barriers to implementation such as patient preference for in-person meetings, Internet access, and incongruity with payment systems were prominent (Hollander & Carr, 2020; Monaghesh & Hajizadeh, 2020; Portnoy et al., 2020; Srinivasan et al., 2022). Our participants reported that the onset of the COVID-19 pandemic intensified workforce burnout by introducing telehealth adaptations that challenged providers’ ability to accurately assess, diagnose, and provide services to children and their families. This barrier was shared widely due to lack of validity for telehealth autism assessments (Dow et al., 2022; Jang et al., 2022). Behavioral data measures (i.e. the ADOS-2) are the gold standard for autism diagnosis but rely heavily on interpersonal interactions that cannot occur virtually. This likely contributes to our participants’ hesitancy to use telehealth for diagnostic evaluations. To facilitate virtual use of the ADOS-2, the University of Minnesota Autism and Neurodevelopmental Clinic (UMN-AND) provided extensive, standardized instruction directly to caregivers on what toys to introduce to mimic ADOS-2 tasks, when to interact with their child, and when to withdraw so that providers could observe independent play (Jang et al., 2022). This was a timely solution to address a real-world challenge that COVID-19 uncovered.

During the pandemic, insurance worsened barriers for families seeking diagnoses by deeming certain diagnostic measures, including many employed via telehealth, invalid (McNally Keehn et al., 2021). As a result, some programs opted to use telehealth only for children they considered “urgent.” Children were classified as urgent based on the need for diagnosis to obtain services, degree of impairment, or evaluation to maintain current levels of care (Jang et al., 2022). This system allowed clinicians to only use telehealth when they were more confident in what the diagnosis would be, thus mitigating the diagnostic uncertainty that our participants experienced. Ability to use assessments in this way, however, depends on the broader structure of healthcare entities that autism providers work within. In addition, while the urgent versus non-urgent classification system was a successful way to triage at these sites, it is important to note that Black children are overrepresented in intellectual disability diagnoses and underrepresented in autism diagnoses (Kim et al., 2021; Pearson et al., 2020). Therefore, such classifications may further activate biases involved in broader misclassification and result in further obstacles to obtaining care for Black children and their families. As our participants explained, children who were unable to be assessed via telehealth, either due to provider or patient concerns, were added to already lengthy waitlists. The negative impact of this reality is twofold: these pending caseloads both compounded provider burnout and worsened “existing bottlenecks” to autism diagnoses and services (Spain et al., 2022).

While literature evaluating effects of telehealth autism assessments is limited, one study reviewing multiple sites reports patient and provider satisfaction with telehealth autism assessments (Jang et al., 2022). In line with our participants, Jang et al. stated that providers appreciated the ability to witness a child’s natural behavior in their home environment via virtual visits. Prior to the pandemic, providers’ understanding of a child’s at-home behavior relied on caregiver report, often via the Autism Diagnostic Interview–Revised, which is susceptible to inaccurate caregiver reporting (Hus et al., 2011) and bias (Mildenberger et al., 2001). However, our participants voiced concerns about how telehealth might undermine patient–provider trust, which necessitates future research. Our findings, along with those discussed above, illustrate how the impact and feasibility of telehealth autism assessments remains unclear.

Strengths and limitations

Our study sample was composed of 26 participants across various autism-related sectors in North Carolina. Although participants represented seven counties across the state, most organizations served surrounding counties as well, providing a relatively thorough regional sample. Included counties were urban and rural, which allowed us to gain rich insight into resource distribution and access issues. In addition, participants worked in different geographic areas throughout their careers. This allowed us to gain insights not only relevant to NC, but also the other states in which participants had worked. Given our focus on workforce, it is notable that 15 focus group participants were associated with academic institutions. Academic institutions traditionally emphasize research and have larger programs with more funding. As such, they may experience different barriers and require alternative solutions when compared with smaller, non-academic programs. Although we were intentional to recruit participants from racial and ethnic minority backgrounds, a majority of our sample self-identified as White (64%; n = 16) on the demographic survey. Future studies should prioritize the inclusion of more Black and Latinx professionals and workforce members in other states.

Our sample represented multiple sectors within the autism workforce, offering diverse experience and perspectives. While we intentionally did not recruit family members to avoid creating power imbalances within focus groups, five participants self-identified as a parent of an autistic individual. Such representation allowed for a deeper understanding of the relationship between caregivers and professionals in the field and will be explored in a companion paper. Finally, it is possible that barriers were at the forefront of participants’ minds due to pandemic challenges. However, the pandemic also required dramatic innovation, potentially allowing participants to discuss solutions that were not previously top of mind (e.g. telehealth).

Conclusion

This study elucidated workforce barriers and facilitators contributing to inequities in early childhood autism evaluation, referrals, and treatment. Our findings illuminated distinct gaps in workforce racial, ethnic, and cultural diversity; education on autism signs and treatment; inadequate compensation; and burnout worsened by the pandemic. To achieve equitable pediatric developmental and behavioral health services, investments in the cross-sector autism service provision workforce should prioritize diversity throughout student and professional development; embed cultural awareness, responsiveness, and humility training in professional curriculums; train all pediatric providers on IDD and autism; and establish partnerships with caregivers as experts on their children. Care models, health systems, and an interdisciplinary workforce that center equity are critical to both addressing disparities and incentivizing quality care that is sustainable in the communities where children and families live, work, and play.

Supplemental Material

sj-docx-1-aut-10.1177_13623613241235522 – Supplemental material for Workforce perspective on racial and ethnic equity in early childhood autism evaluation and treatment: “The cornerstone of everything we do”

Supplemental material, sj-docx-1-aut-10.1177_13623613241235522 for Workforce perspective on racial and ethnic equity in early childhood autism evaluation and treatment: “The cornerstone of everything we do” by A Buck, S Hurewitz and M Scotton Franklin in Autism

Footnotes

Acknowledgements

We would like to thank our focus group participants for sharing their expertise and Dr Gillian Sanders Schmidler and Dr Geraldine Dawson for their guidance. We are so appreciative of the organizational support provided by Duke-Margolis Center for Health Policy and the Duke University Bass Connections program.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by a Duke University Bass Connections research grant.

ORCID iD

S Hurewitz

Supplemental material

Supplemental material for this article is available online.

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