A Review of Diagnosis and Service Disparities Among Children With Autism From Racial and Ethnic Minority Groups in the United States

CHAPTER FOUR

A Review of Diagnosis and Service Disparities Among Children With Autism From Racial and Ethnic Minority Groups in the United States Amber M. Angell*, x, 1, Allison Empey{ and Katharine E. Zuckerman{, jj *Department of Occupational Therapy, University of Illinois at Chicago, Chicago, IL, United States x Department of Occupational Therapy, University of Florida, Gainesville, FL, United States { Division of General Pediatrics, Oregon Health & Science University, Portland, OR, United States jj OHSU-PSU School of Public Health, Portland, OR, United States 1 Corresponding author: E-mail: [email protected]fl.edu

Contents 1. Introduction 1.1 Healthcare Disparities: Structural and Individual Factors 1.2 Autism Diagnosis: The Research Practice Gap 1.3 Disparities in ASD Diagnosis 1.4 Disparities in ASD Service Use 2. Latino Children With ASD 3. African-American Children With ASD 4. Asian/Pacific Islander Children With ASD 5. American Indian/Alaska Native Children With ASD 6. Other Correlates of Disparities in ASD 6.1 Socio-Economic Status 6.2 Immigration Status 6.3 Geography/Neighborhoods 6.4 Rural Areas 6.5 Adverse Childhood Events 7. Addressing ASD Disparities: Promising Practices 8. Conclusion Acknowledgments References

International Review of Research in Developmental Disabilities, Volume 55 ISSN 2211-6095 https://doi.org/10.1016/bs.irrdd.2018.08.003

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Abstract As rates of autism spectrum disorder (ASD) in the United States have continued to rise, there is evidence of racial and ethnic disparities in ASD prevalence and services access. Compared to White children, children from racial and ethnic minority groups are less likely to be diagnosed with ASD and more likely to be mis-diagnosed or diagnosed later; and once diagnosed, they receive fewer ASD services. In this article, we review current knowledge about ASD disparities, including the complex and multifaceted causes. We highlight areas where further research is needed. Finally, we review promising practices to address ASD disparities, arguing that efforts to reduce disparities are needed at multiple levels such as parent education, widespread adoption of screening in healthcare and community settings, and effective interventions developed for community and school settings.

1. INTRODUCTION Autism spectrum disorder (ASD) is characterized by impairment in communication and social skills and the presence of repetitive or stereotyped behaviors, interests, and activities (APA, 2013). The estimated prevalence of autism spectrum disorder (ASD) in the US is one in 59 children ages 8 years and younger (Baio et al., 2018). However, there are significant and persistent racial and ethnic disparities in autism prevalence and services access. Compared to White children, children from racial and ethnic minority groups are less likely to be diagnosed with ASD and more likely to be mis-diagnosed or diagnosed later; and once diagnosed, they receive fewer ASD services (Bishop-Fitzpatrick & Kind, 2017; Maga~ na, Parish, Rose, Timberlake, & Swaine, 2012; Mandell et al., 2009; Shattuck, Durkin, et al., 2009). In this article, we review current knowledge about ASD disparities, including causes and promising practices to address them.

1.1 Healthcare Disparities: Structural and Individual Factors The causes of healthcare disparities among racial and ethnic minority groups in the United States are multifaceted, stemming from a complex interplay of factors (Smedley, Stith, & Nelson, 2003; Woolf & Braveman, 2011). In a landmark 2003 report, the US Institute of Medicine defined healthcare disparities as “racial or ethnic differences in the quality of healthcare that are not due to access related factors or clinical needs, preferences, and appropriateness of intervention” (Smedley, Stith, & Nelson, 2003, pp. 3e4). Because children with ASD can receive a range of services (e.g., health,

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developmental, behavioral, educational) from multiple systems, for this paper we broaden the previous definition of healthcare disparities to discuss ASD service disparities, inclusive of multiple systems (healthcare, education, early intervention) and types of ASD services. The Institute of Medicine report posits that disparities must be addressed at two levels: 1) the structural level, including the operations of systems of care and the regulatory and policy climate; and 2) the interactional level, including patienteprovider interactions and perceptions and bias or discrimination (Smedley et al., 2003). A more recent report from the Agency for Healthcare Research and Quality (2017) found that while there have been some reductions in healthcare disparities since 2000, most measures of healthcare disparities remain unchanged. Research consistently shows that disparities exist even when factors related to access are controlled for (Smedley et al., 2003; Woolf & Braveman, 2011). In this article, we will highlight what is known about structural and interactional level causes of ASD disparities for children ages 8 and younger. Race and ethnicity in the context of ASD disparities. Although racial and ethnic health services disparities are associated with socioeconomic differences and, in the broader body of health disparities literature, a few diminish or disappear when socioeconomic status is controlled for, the majority of research has found that racial and ethnic disparities remain even after controlling for socioeconomic difference (AHRQ, 2017; Smedley et al., 2003). This is also true of ASD disparities research: While some studies have shown that higher socioeconomic status and related factors like parent education are associated with higher ASD prevalence and earlier diagnosis (Durkin et al., 2010; Fountain, King, & Bearman, 2011), there is recent evidence of racial and ethnic ASD disparities even when socioeconomic status is controlled for (Dickerson et al., 2017; Durkin et al., 2017; Emerson, Morrell, & Neece, 2016; Palmer, Walker, Mandell, Bayles, & Miller, 2010). It is important to define race and ethnicity with regards to ASD disparities. We follow the US Census Bureau (2017) definition of race as “a person’s self-identification with one or more social groups,” acknowledging that while these categories were historically thought to reference biological markers, there is little evidence that such biological markers exist (Bhopal & Donaldson, 1998). While a connection between race or ethnicity and biology cannot be completely denied, the connection is ambiguous, as racial and ethnic categories characterize individuals of extremely diverse ancestry and are influenced by numerous social, cultural, and environmental

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factors which contribute to disease (Collins, 2004; Cooper, 2002). Attributing disease to race or ethnicity without giving significant weight to social, cultural, economic, and environmental factors can reify socially constructed racial categories and fail to understand the ways in which social factors influence disease and disability (Smedley et al., 2003; Woolf & Braveman, 2011).We use the Census Bureau (2017) definition of ethnicity as whether someone identifies as Latino/Hispanic or nonLatino/non-Hispanic. Similar to reports on ASD prevalence from the Autism and Developmental Disabilities Monitoring Network (ADDM, described in greater detail below), we use the following racial categories: White (non-Latino) [herein “White”], African-American (non-Latino) [herein “African-American”], Asian/Pacific Islander (non-Latino) [herein “Asian/Pacific Islander”], and American Indian/Alaska Native (non-Latino) [herein “American Indian/Alaskan Native”] (Baio et al., 2018).

1.2 Autism Diagnosis: The Research Practice Gap There is wide heterogeneity in the presentation of ASD symptoms among children over time, presenting challenges for timely and accurate detection (Matson & Jang, 2014). Although advances have been made toward identifying genetic markers, ASD is currently diagnosed by behavioral observation and standardized behavioral evaluations (Constantino & Charman, 2016; De La Torre-Ubieta, Won, Stein, & Geschwind, 2016). This makes diagnosis to a large degree subjective, and “any degree of uncertainty a physician may have relative to the condition of a patient can contribute to disparities in treatment” (Smedley et al., 2003, p. 9). Research indicates that ASD can be reliably diagnosed in children around age 2 years by experienced clinicians (Corsello, Akshoomoff, & Stahmer, 2013), but average age at diagnosis is much older (Zwaigenbaum & Penner, 2018). Despite the American Academy of Pediatrics recommendation for early ASD screening, pediatric healthcare providers report challenges in screening young children (Crais et al., 2014), and some raise concerns that early screening may result in unnecessary parental concerns and service use (Al-Qabandi, Gorter, & Rosenbaum, 2011; McPheeters et al., 2016). The challenge of closing the gap between research ideals and practice realities is complex. Many families do not have access to expert clinicians or specialists; existing best practices diagnostic tools are not always available or chosen; and evaluator ASD diagnostic agreement rates in community sites are as low as 45% (Williams, Atkins, & Soles, 2009; Zuckerman et al., 2013).

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The gap is even wider for children from underserved communities, who are less likely to have access to specialists or be screened using appropriate tools in their family’s primary language (Williams et al., 2009; Windham et al., 2014; Zuckerman et al., 2013).

1.3 Disparities in ASD Diagnosis Although the combined estimated ASD prevalence is 16.8 per 1000 (one in 59) children, it is significantly higher among non-Latino White children (17.2 per 1000) than among non-Latino African-American children (16.0 per 1000), Latino children (14.0 per 1000), and Asian/Pacific Islander children (13.5 per 1000) (Baio et al., 2018).1 The Autism and Developmental Disabilities Monitoring (ADDM) Network, a multi-year, active surveillance system of the US Centers for Disease Control and Prevention, provides the most methodologically sound US prevalence estimates for ASD (Baio et al., 2018). The ADDM estimates ASD prevalence across 11 US sites, which were chosen to target a racially and ethnically diverse population. The ADDM has consistently reported disparities in estimated prevalence and age of earliest evaluation among children from racial and ethnic minority groups compared to White children. The most recent estimates indicate that across most sites, prevalence disparities between White and African-American children have decreased, but the gap between White and Latino children remains even as prevalence has increased in all groups. Causal factors in diagnosis disparities. The hypothesis that racial and ethnic differences are due primarily to under-ascertainment in certain groups is supported by evidence that the prevalence difference between White and African-American children has been decreasing over time, suggesting that greater attention to disparities may be leading to improved detection and a narrowing of the gap (Baio et al., 2018). Additionally, racial and ethnic minority children who meet criteria for ASD are less likely than White children to be diagnosed overall (Baio et al., 2018; Mandell et al., 2009), and they are more likely to be misdiagnosed (Mandell, Ittenbach, Levy, & Pinto-Martin, 2007). They are also on average diagnosed at an older age than White children (Mandell, Listerud, Levy, & Pinto-Martin, 2002; Valicenti-McDermott, Hottinger, Seijo, & Shulman, 2012); and 1

The most recent ADDM surveillance data included 0.6% American Indian/Alaska Native children, which was too few to generate a stable estimated ASD prevalence across sites (Baio et al., 2018). We address the known issues with this population later in this review.

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they are more likely to have a lower IQ, suggesting that a milder phenotype is under-detected in these groups (Baio et al., 2018). Another factor suggesting under-ascertainment is access to information. Children with highly-educated parents are diagnosed earlier than those with less formal education, suggesting that more highly-educated parents may have access to information about child development and ASD symptoms and express concerns to a provider earlier (Bickel, Bridgemohan, Sideridis, & Huntington, 2015; Daniels & Mandell, 2014; Fountain et al., 2011). The issue of ‘first concerns’ has been of great interest in ASD disparities research. The literature initially posited that parent knowledge and culture likely contributed to when and how first concerns emerged (Mandell & Novak, 2005). Supporting this, international studies have shown that first concerns are culturally influenced, and some studies with US parents suggest that parental recognition of ASD symptoms may be influenced by culture (Daley, 2004; Grinker et al., 2012; Tek & Landa, 2012). Donohue, Childs, Richards, and Robins (2017) recently found that, even when controlling for symptom severity, African-American parents of children with ASD risk were significantly less likely than White parents of children with ASD risk to report concerns to healthcare providers that were specific to ASD symptoms (social and restricted/repetitive behavior). However, African-American and White parents in this study did not differ in reporting non-ASD developmental concerns, including disruptive behavior. Similarly, Blacher, Cohen, and Azad (2014) found that while Latina mothers identified general developmental delays in their children, White mothers reported significantly more ASD-related developmental concerns than Latina mothers, even though the Latino children in the sample had more severe ASD symptoms than the White children with ASD. However, several US studies that have directly investigated age at first concerns found no difference between racial and ethnic minority and White parents (Cuccaro et al., 2007; Jang, Matson, Cervantes, & Konst, 2014; Ratto, Reznick, & Turner-Brown, 2016), suggesting that the content of parental concern may matter more than timing per se. For racial and ethnic minority children, there are greater delays between parents’ first concerns to time of diagnosis, suggesting that the parents may face challenges communicating their concerns to providers, navigating systems, or gaining access to referrals and specialists (Jegatheesan, 2009; Sansosti, Lavik, & Sansosti, 2012; Zuckerman, Sinche, Mejia, et al., 2014). Racial and ethnic minority parents may also wait longer to convey

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their concerns to a provider, which could be due in part to cultural stigma, distrust of providers and systems of care, and discouragement from their family or community (Burkett, Morris, Manning-Courtney, Anthony, & Shambley-Ebron, 2015; Jegatheesan, Fowler, & Miller, 2010; Zuckerman et al., 2017). Making the diagnostic situation even more complex, emerging research suggests that there may be racial and ethnic differences in behavioral presentation of ASD (Becerra et al., 2014; Sell, Giarelli, Blum, Hanlon, & Levy, 2012). For example, African-American children with ASD in a population based cohort were less likely than White children with ASD to have documented DSM-IV criteria such as restricted interests and repetitive or stereotyped behavior (Sell et al., 2012). In Becerra et al.’s (2014) study, children in Los Angeles County whose mothers were African American or Black (US or foreign-born), Central/South American, or US-born Latino, were more likely than children of US-born White mothers to demonstrate an ASD phenotype with severe emotional outbursts and impaired expressive language. Primary care providers who do not have expertise in diagnosing ASD may therefore be more susceptible to overlooking ASD signs among children who present with non-classic symptoms or concerns (Emerson et al., 2016). Clinician bias (implicit or explicit) may also play a role in underascertainment and delayed diagnosis for children from racial and ethnic minority groups. In general, parents of children with ASD report that primary care providers did not respond proactively to their concerns about their child’s development, and this phenomenon may be more pronounced for families from racial and ethnic minority groups (Carbone, Behl, Azor, & Murphy, 2010; Zuckerman, Sinche, Mejia, et al., 2014). Primary care providers may perceive that ASD screening tools are not as useful with Spanish speakers or low literacy parents; and providers perceive parents from racial and ethnic minority groups to be less informed about ASD (Burkett et al., 2015; Windham et al., 2014; Zuckerman et al., 2013). Perceiving parents to be less informed, however, did not appear in these studies to cause primary care providers to give parents more ASD information, possibly due to providers’ low self-perceived ASD competency and lack of time (Carbone et al., 2013; Golnik, Ireland, & Borowsky, 2009; Windham et al., 2014). Finally, primary care providers report a lack of specialists to which they can refer underserved families (Crais et al., 2014; Jimenez, Martinez Alcaraz, Williams, & Strom, 2017; Zuckerman et al., 2013).

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1.4 Disparities in ASD Service Use Early intervention. Diagnostic disparities are consequential because they impact access to early intervention, which is critical for improved developmental outcomes (Estes et al., 2015; Landa, 2018; Vismara & Rogers, 2010; Warren et al., 2011; Weitlauf et al., 2014). Expert groups recommend that children with ASD receive early intensive behavioral intervention (EIBI), characterized by 20 or more hours per week of behavioral intervention such as applied behavior analysis (ABA) before the age of 4 (Reichow, Barton, Boyd, & Hume, 2014; Smith, 2011). Racial and ethnic minority children with ASD are less likely than White children with ASD to access publicly funded community-based services such as early intervention and ABA; and those who do are less likely to receive the recommended intensity of 20 h per week (Maga~ na, Lopez, Aguinaga, & Morton, 2013; Zuckerman et al., 2017). Recent research has also focused on parent-mediated early intervention, recognizing the important role of parents in facilitating everyday learning opportunities (Landa, 2018; Zwaigenbaum et al., 2015). Such interventions can improve parent responsiveness to toddlers (Kasari, Siller, et al., 2014) and even infants (Baranek et al., 2015; Rogers et al., 2014) at risk for ASD, but more research is needed to identify implementation among culturally diverse, low-resourced families in community settings. In a study with low-resourced preschool-aged children, Kasari, Lawton, et al. (2014) showed that caregiver-mediated intervention improved child outcomes with sustained effects. A secondary analysis of these findings indicates that when such interventions are designed to be accessible to lowresourced families, most families demonstrate good treatment attendance; however, there is a dearth of ASD intervention research that has focused on the specific needs of low-resourced families to support their research and treatment participation (Carr et al., 2016). School-based services. Children with ASD ages three and older receive the majority of services through their public school special education system (Bilaver, Cushing, & Cutler, 2016), but racial and ethnic minority children experience disparities in the type and amount of special education services received (Harstad, Huntington, Bacic, & Barbaresi, 2013; Siller, Reyes, Hotez, Hutman, & Sigman, 2014; St. Amant et al., 2018). There is a need for evidence-based ASD interventions specifically designed for racial and ethnic minority children in school settings (Brookman-Frazee,

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Drahota, Stadnick, & Palinkas, 2012; Kasari & Smith, 2013; Parsons & Kasari, 2013; Stahmer, Suhrheinrich, & Mandell, 2016). Severini, Ledford, and Robertson (2018) found that racial and ethnic minority students were overrepresented in school-based interventions to reduce problem behaviors for students with ASD, contrary to general patterns of underrepresentation in ASD research.This suggests that even after ASD has been identified, racial and ethnic minority children may be still be disproportionately targeted as having “behavior problems,” a pattern also found among racial and ethnic minority students in general education settings (Skiba et al., 2011). Healthcare services. Pediatric primary care providers report a general lack of ASD knowledge and a need for more information, and parents report that pediatric providers are not good at addressing autism-specific needs (Carbone et al., 2013, 2010; Golnik et al., 2009). Children with ASD have worse access to healthcare and medical homes than children with other special healthcare needs (Kogan et al., 2008; Tregnago & Cheak-Zamora, 2013), and children from racial and ethnic minority groups with ASD face even greater barriers in access to healthcare (Iland, Weiner, & Murawski, 2012; Parish, Maga~ na, Rose, Timberlake, & Swaine, 2012). AfricanAmerican, Latino, and low-resourced children with ASD have worse healthcare access than White children with ASD and are less likely to use specialty healthcare services (Broder-Fingert, Shui, Pulcini, Kurowski, & Perrin, 2013; Liptak et al., 2008). Causal factors in services disparities. Systems-level causes of services disparities include systemic disparities in allocation of resources; a lack of providers in certain geographic areas; a lack of services provided in nonEnglish languages; and slow, inefficient, siloed, confusing systems (Leigh, Grosse, Cassady, Melnikow, & Hertz-Picciotto, 2016; St. Amant et al., 2018; Zuckerman, Sinche, Mejia, et al., 2014). Karp et al. (2018) found that greater maternal stress and having a younger sibling were associated with lower odds of receiving interventions, suggesting that the burden is on parents to find and secure services (cf. Angell & Solomon, 2017). Individual level factors contributing to racial and ethnic ASD services disparities include cultural stigma (Zuckerman, Sinche, Mejia, et al., 2014), a lack of parent knowledge about services (Maga~ na et al., 2013; Zuckerman et al., 2017), and parent beliefs about ASD, such as belief that the parent has power to change the child’s condition (Zuckerman, Lindly, Sinche, & Nicolaidis, 2015).

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More research is needed to identify the extent to which disparities are caused a lack of access or information versus a lack of culturally tailored interventions (Angell, Frank, & Solomon, 2016; DuBay, Watson, & Zhang, 2017; Zwaigenbaum et al., 2015). In a recent review, Zwaigenbaum et al. (2015) identified as a key research priority the need to include culturally diverse populations in research, and to evaluate family factors that may influence intervention acceptability for such families (Carr et al., 2016; Ratto et al., 2017; Zamora, Williams, Higareda, Wheeler, & Levitt, 2016). Autism intervention research has historically been conducted primarily with White children, and scholars have recently noted that intervention studies often fail to report the racial and ethnic characteristics of their study sample, making it difficult to assess diversity in ASD research, as well as how these characteristics influence treatment effects (Broder-Fingert, Silva, Silverstein, & Feinberg, 2017; Carr et al., 2016; Pierce et al., 2014; Ratto et al., 2017; West et al., 2016). Because of this history, less is also known about non-White families of children with ASD, although this is an emerging area of research (Angell & Solomon, 2017; Grinker et al., 2012; Jegatheesan, 2009; Solomon, Angell, Yin, & Lawlor, 2015; Zuckerman, Sinche, Mejia, et al., 2014). In the following sections, we review ASD disparities among specific racial and ethnic minority groups.

2. LATINO CHILDREN WITH ASD Despite a decreasing White:Latino ASD prevalence ratio, the estimated prevalence among White children remains 22% greater than among Latino children (Baio et al., 2018; Liptak et al., 2008). Latino parents of children with ASD report that disparities are caused by factors at multiple levels, including poor healthcare access, a lack of Spanish-language services, and worse access to resources and social capital (Blanche, Diaz, Barretto, & Cermak, 2015; Lopez, 2014; Maga~ na et al., 2013; Zuckerman, Sinche, Cobian, et al., 2014). Latino parents report that the diagnostic process is stressful for them and uncomfortable for their child, particularly when it requires multiple visits, making it difficult to complete (Zuckerman et al., 2017; Zuckerman, Sinche, Mejia, et al., 2014). Latino families with limited English proficiency are more likely than White families to report that ASD knowledge and distrust of providers are barriers to diagnosis (Zuckerman et al., 2017), and time from first concerns to diagnosis

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may be longer for Latino children than White children (Ratto, Reznick, et al., 2016). Pediatric primary care providers report difficulty assessing for ASD risk in Latino children whose families’ primarily language is Spanish, and few report offering developmental screenings in Spanish (Zuckerman et al., 2013). Providers who serve large numbers of low-income Latino children report a lack of time to conduct screenings (Windham et al., 2014). In a chart review, Williams et al. (2009) found that for Spanish-speaking Latino children with ASD, most community assessments did not specify whether the child was assessed in Spanish. Once diagnosed, Latino children with ASD receive fewer total services than White children with ASD, and their parents are more likely to report unmet service needs (Iland et al., 2012; Maga~ na, Parish, & Son, 2016; Maga~ na et al., 2013; Zuckerman et al., 2017). Compared to White children with ASD, Latino children with ASD have decreased access to and use of specialty healthcare services (Broder-Fingert et al., 2013), and their parents are more likely to report that healthcare providers did not spend enough time with them, did not make them feel like a partner, and were not culturally sensitive (Maga~ na et al., 2012; Parish et al., 2012). Disparities are also documented in school systems. Palmer et al. (2010) found significantly lower ASD rates in predominantly Latino school districts in Texas compared to predominantly White districts, and Latino children with autism special education eligibility are underrepresented in 95% of US states (Morrier & Hess, 2012). Latino children with a parent reported ASD diagnosis are less likely than their White counterparts to have an Individualized Education Plan (IEP; Harstad et al., 2013), and Latino children with ASD whose parents speak Spanish are less likely to have social skills and communication goals in their IEP compared to children from English-speaking families (St. Amant et al., 2018). Zuckerman et al. (2017) also found that language played an important role in barriers to ASD services. In their sample, compared to White parents and Latino parents with English proficiency, Latino parents with limited English proficiency reported the highest number of unmet therapy needs and lowest weekly therapy hours for their children with ASD. Colbert, Webber, and Graham (2017) also found that language was a significant predictor of ASD knowledge in a sample of Latino parents, and language was more strongly correlated with knowledge than acculturation, underscoring the importance of language in ASD disparities.

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Multiple studies have found that Latino parents have decreased access to information about ASD (Maga~ na et al., 2013; Zuckerman et al., 2017; Zuckerman, Sinche, Cobian, et al., 2014; Zuckerman, Sinche, Mejia, et al., 2014), even when controlling for education (Ratto, Reznick, et al., 2016). Zuckerman et al. (2014) reported a general lack of ASD knowledge among Latino parents; and Ratto, Anthony, et al. (2016) and Ratto, Reznick, et al. (2016) found that Latina mothers of children with ASD had less knowledge than their White counterparts, even among mothers whose children had been diagnosed with ASD four years prior. However, Lajonchere et al. (2016) found that Latino parents of children with ASD desired more accessible scientific ASD knowledge, and Maga~ na et al. (2013) showed that Latina mothers’ level of education and sources of knowledge about ASD did not account for differences in their children’s unmet service needs, pointing to the role of systemic factors. There is a growing body of research attempting to understand how culture influences how and when first signs of ASD are identified by Latino parents and brought up to healthcare providers (Blacher et al., 2014; Cohen & Miguel, 2018; Ijalba, 2016), and how families from diverse cultural backgrounds experience their children’s ASD services (Angell & Solomon, 2014, 2017, 2018; Angell et al., 2016; DuBay et al., 2017). Within this literature, parents frequently report that cultural stigma is a factor related to delayed or missed ASD diagnosis, for example by creating a sense of shame and delay in bringing concerns to a provider (Blanche et al., 2015; Zuckerman et al., 2017; Zuckerman, Sinche, Cobian, et al., 2014; Zuckerman, Sinche, Mejia, et al., 2014). Mexican-heritage parents living in the US in Cohen and Miguel’s (2018) study linked societal and family stigma with the need for ASD information, such as educating extending family members about reasons for a child’s challenging behavior. Zuckerman, Lindly, Reyes, Chavez, and Cobian (2018) developed a scale of parent perceived stigma and found that Latino parents with limited English proficiency, along with less educated parents, non-US native parents, and publicly-insured families, were more likely to have higher stigma scores.

3. AFRICAN-AMERICAN CHILDREN WITH ASD Overall, African-American children are less likely to be diagnosed with ASD (16 per 1000 versus 17.2 per 1000 in White children) (Baio et al., 2018). A study by Mandell et al. (2007) suggested that AfricanAmerican children were less likely to receive an ASD diagnosis on their first

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specialty visit and were instead more likely to be diagnosed with conduct or adjustment disorders, suggesting a higher rate of misdiagnosis. Similarly, Broder-Fingert et al. (2013) showed that African-American families of children with ASD were less likely to use ASD-related specialty services overall. Of those diagnosed with ASD, African-American children are more likely than White children to have comorbid intellectual disability (44% versus 22%) (Baio et al., 2018), suggesting an ascertainment bias toward a more severe phenotype. Multiple factors have been hypothesized to influence ASD disparities for African-Americans, many of which are common to other racial and ethnic groups. First, there may be an issue of services accessibility, which is known to be poorer in African-American children overall (Flores & Tomany-Korman, 2008) and is particularly problematic in ASD specifically (Gordon-Lipkin, Foster, & Peacock, 2016). One study reported a longer delay from first concerns to diagnosis in African-American families versus White ones (Sansosti et al., 2012). However, it is unclear how large a role healthcare access specifically contributes to ASD healthcare quality. For instance, one study showed that having a consistent source of care predicted earlier ASD diagnosis for White but not African-American children (Emerson et al., 2016). It seems more clear that once care is accessed, African-American children with ASD appear to receive lower-quality services than White counterparts: In a large study of educational data in California (Leigh et al., 2016), African-American children were noted to receive less per-capita educational spending than white children with similar characteristics. African-American children are also less likely to receive family-centered care overall (Magnusson, Minkovitz, Kuhlthau, Caballero, & Mistry, 2017) and specific to ASD (Montes & Halterman, 2011). As previously noted, provider behavior may also contribute to disparities. Zuckerman et al. (2013) observed that pediatricians are less comfortable identifying the early signs of ASD in African-American children and perceive that African-American parents are less knowledgeable about ASD compared to White parents. There is also some question as to whether the presenting characteristics of ASD differ in African-American compared to White children. In a population-based cohort of children with ASD, Sell et al. (2012) reported a variety of differences in presentation of core DSM-IV criteria for ASD among African-American versus White children. However, Cuccaro et al. (2007) reported similar core features, such as social skills and repetitive behavior,

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but differences in overall severity; African-American children in the study had significantly later speech acquisition. The authors concluded that there may be a more severe language phenotype in their African-American sample. There is also some evidence that parents’ presenting concerns and/or interpretation of ASD symptoms may differ by race and could contribute to ASD disparities. For instance, similar to findings in Latinos, African-American parents of children with ASD may initially present with more non-specific concerns: Donohue et al.’s (2017) study of toddlers who had screened positive for ASD showed that African-American parents reported fewer autism concerns (i.e., social and restricted and repetitive behavior concerns) than White parents, but not fewer non-autism concerns (e.g., motor, behavioral, or general developmental concerns). Burkett et al. (2015) note that parents “being protective” and “encouraging independence” might also lead to provider under-interpretation of the child’s symptom severity, leading to later diagnosis and/or fewer services offered. However, it is also possible that cultural differences in how parents socialize their children with ASD (especially, with greater emphasis on autonomy), may lead to true differences in behavior problems (Ratto, Reznick, et al., 2016). It is also possible that when compared to White parents, AfricanAmerican parents may view their child’s ASD symptoms as less impairing, find a larger range of child behavior acceptable, or be less likely to pathologize certain behaviors. Though this strengths-based approach may have benefits for family well-being, it could also lead to lower rates of service need and use. Magnusson (2017) described this as the concept of children “being different and developing in their own time.” For example, Ratto, Anthony, et al. (2016) showed that parents of African-American youth with ASD reported lower levels of impairment compared to White children of similar symptom severity. In particular, African-American youth had significantly lower rates of parent-reported difficulties with daily functioning in adaptive behavior, executive functioning, and socialemotional functioning than their White peers. Likewise, Bishop, Richler, Cain, and Lord (2007), found that African-American parents perceived less negative impact of having a child with ASD, even after adjusting for severity. A 2007 study suggested that African-American parents are less likely to participate in ASD support groups (Mandell & Salzer, 2007). This could reflect either less need for social support or less comfort with the support group environment.

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Finally, distrust of health and educational providers may be an important issue in access to ASD care for African-Americans. A theme that emerged in several qualitative studies was the idea of “being watchful” due to concerns that the child might be mistreated or that parental concerns might be misconstrued as neglect (Burkett et al., 2015; Jimenez, Barg, Guevara, Gerdes, & Fiks, 2012; Magnusson et al., 2017), often due to parents’ prior experience of bias and racism in health and educational systems (Gourdine, Baffour, & Teasley, 2011).

4. ASIAN/PACIFIC ISLANDER CHILDREN WITH ASD Little is known about ASD diagnosis and service disparities among Asian/Pacific Islander children in the US, due both to insufficient numbers in most epidemiological studies and the heterogeneity of the population. Using US Department of Education data, Dyches, Wilder, Sudweeks, Obiakor, and Algozzine (2004) and the National Research Council (2002) found that Asian/Pacific Islander children were identified with autism in educational settings at disproportionately higher rates than other racial and ethnic minority groups. However, the ADDM report indicates that the estimated ASD prevalence for Asian/Pacific Islander children is lowest among the four groups in the study (13.5 per 1000), with notably wide CIs among individual site estimates (Baio et al., 2018). Mandell et al. (2009) found that Asian American children with an intellectual disability who met a case definition for ASD per record review were less likely than White children to have a documented ASD diagnosis, although this disparity was not present among those with a higher IQ. Although there is little ASD-specific research with this population, Asian American parents of children with developmental delay (DD) report that stigma can create a barrier to requesting or accepting services for their children (Bernier, Mao, & Yen, 2010; Raghavan, Weisner, & Patel, 1999; Wilder, Dyches, Obiakor, & Algozzine, 2004). Yeh, Hough, Lau, and Garland (2004) found that Asian/Pacific Islander parents were more likely to endorse sociological (e.g., the influence of the child’s friend or American culture) rather than biopsychosocial (e.g., differences in brain development) as causes of their child’s mental health problems Some Asian country languages may not even include a word for “autism,” contributing to barriers to understanding ASD (Dobson, Upadhyaya, McNeil, Venkateswaran, & Gilderdale, 2001).

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Cultural beliefs may also play a role. For instance, multiple studies (Kang-Yi, Grinker, & Mandell, 2013; Kim et al., 2011) found that both South Korean parents and Korean physicians tend to conflate autism with reactive attachment disorder, or with some other condition caused by a mother’s “lack of love” for her child, similar to Bettelheim’s “refrigerator mother” concept from the 1960s. It stands to reason that similar beliefs may be held by recent Korean-American immigrants, although little research has been done in US samples specifically. Twoy, Connolly, and Novak (2007) found that Asian American parents were more likely than White parents to use a “reframing” coping mechanism in relation to their child’s ASD, or to see ASD as a fact of life and redefine it in a more positive way. Like previously reviewed research with African-American families, this coping mechanism may be a strength for family wellbeing, but it is unknown whether it causes a delay in parental identification of and response to ASD symptoms. In a qualitative study with Asian American mothers of children with DD (19 of 23 diagnosed with ASD), the mothers perceived professionals to be critical, negative, and only focused on the child’s impairments, and this led some to discontinue services (Jegatheesan, 2009). Mothers with limited English proficiency reported they had been given English-language written materials or provided with woefully inadequate interpreters for healthcare visits or educational meetings. Even English-proficient mothers reported difficulty discussing family “problems” with or questioning providers, making assertiveness and advocacy difficult. Similarly, in Jegatheesan et al.’s (2011; 2010; 2010) ethnographic study with three South Asian Muslim immigrant families of children with ASD, the families perceived US doctors to be brisk and impersonal and as a result delayed bringing their concerns to a healthcare provider (Jegatheesan, Fowler, et al., 2010). Because the families believed Allah “chose” them to have a special child based on their ability to be loving, nurturing, and resilient, professionals’ emphasis on the child’s impairments or delays led to further tensions (Jegatheesan, Fowler, et al., 2010). Southeast Asian immigrant families in California in Luong et al.’s (2009) study attributed their children’s late ASD diagnoses to a lack of knowledge and support from family and service providers when concerns were raised and to language barriers. In St. Amant’s (2018) low-income California sample, which included parents who spoke a number of Asian languages, parental language (not ethnicity) predicted the number of service hours their children with ASD received, and children whose parents’ primary language

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was not English were less likely to have social skill and communication related IEP goals. There is a need for more research to understand ASD disparities in this large and diverse population.

5. AMERICAN INDIAN/ALASKA NATIVE CHILDREN WITH ASD There is a dearth of research about American Indian/Alaska Native children with ASD. Most US epidemiological studies lack sufficient numbers of American Indian/Alaska Native children to include them in analysis, so the overall estimated prevalence is unknown (Baio et al., 2018). In a needs assessment conducted by the Sonoran University Center for Excellence in Developmental Disabilities (UCEDD) at the University of Arizona and the Native American Research and Training Center (NARTC), Cohen et al. (2012) noted that while American Indian/Alaska Native populations have the highest rate of disability of all US racial and ethnic groups, few national datasets have large enough sample sizes of this population to draw meaningful conclusions. The issue is complicated by the diversity of customs and beliefs of each tribal nation, and differences between tribal communities and groups living in urban areas. Analyses of 1998e2000 US Department of Education data (Dyches et al., 2004; National Research Council, 2002) and 2006e07 Individuals with Disabilities Education Act (IDEA) data (Tincani, Travers, & Boutot, 2009) suggest that American Indian/Alaska Native children are underrepresented with autism in educational settings, identified at approximately half the rate of White children. In another study, Morrier and Hess (2012) found that American Indian/Alaska Native children ages 3 to 5 were 0.56 times less likely than other preschoolers to be served under an autism special education eligibility. Travers, Tincani, and Krezmien (2011) showed that the odds of autism special education eligibility for American Indian/Alaska Native children were significantly less than 1.0 for all 9 years examined and were below 0.5 for 8 of the 9 years (1998e2006). Although there is a need for more research examining causal factors in ASD disparities among American Indian/Alaska Native children, Cohen et al.’s (2012) needs assessment noted that most people with DD from American Indian/Alaska Native communities receive services from their local tribal health clinic, early childhood program, or school, but tribes face challenges providing adequate services, and transportation is a barrier to

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receiving off-reservation services. They reported a need for culturallyappropriate and relevant information, training, and services. It is theorized that ASD disparities in American Indian/Alaska Native children may be due to limited access to adequate healthcare, unique tribal beliefs about disability, or a hesitancy to label in light of a long history of discrimination (e.g., Kapp, 2011; Lindblom, 2014). Historic overrepresentation in special education for intellectual disability and emotional disturbance have been associated with a lack of culturally sensitive assessment tools, environmental and socioeconomic factors influencing school readiness, and individual and institutional bias (Coutinho & Oswald, 2000). Additionally, historic exploitation and a lack of community-driven research studies in native communities may contribute to the dearth of ASD research. While there have been few studies examining ASD beliefs in American Indian/Alaska Native communities, there is evidence that culture influences how ASD is conceptualized (Daley, 2004; Kang-Yi et al., 2013). Because there is wide variation in the cultural practices of the 573 federally recognized tribal nations and 200 Alaska Native villages, there may also be variation in conceptualizations of disability (U. S. Census Bureau, 2015a). According to Kapp (2011), the Navajo culture embraces a philosophy of diversity and full inclusion wherein ASD is seen not as a disease but a form of variation determined by the Creator. More research is needed to determine whether this is true for other tribal cultures. Although not specifically studied, language barriers may also play in role in ASD disparities, as 26.8% of American Indian/Alaska Native people speak a non-English language at home (U. S. Census Bureau, 2015b).

6. OTHER CORRELATES OF DISPARITIES IN ASD 6.1 Socio-Economic Status It is important that analyses of racial and ethnic disparities in ASD also account for family socio-economic status (SES), defined as “an individual or group’s access to basic resources required to achieve and maintain good health” (Shavers, 2007, p. 1013). In most US studies, household or census block income, parental educational attainment, parental employment type, or a combination of these factors are used as proxy variables for family SES. Multiple studies have shown that higher income and/or parental education are associated with increased ASD prevalence

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(Bhasin & Schendel, 2007; Durkin et al., 2010, 2017; Thomas et al., 2012), earlier diagnosis (Goin-Kochel, Mackintosh, & Myers, 2006; Mandell, Novak, & Zubritsky, 2005), and increased use of ASD-related services (Shattuck, Grosse, Parish, & Bier, 2009). Durkin et al.’s (2017) analysis of recent ADDM data by both race/ ethnicity and SES provides perhaps the most recent comprehensive analysis of this issue. Using three different indicators of SES (census-block educational attainment, census block income, and census block percent in poverty), this study found a doseeresponse relationship between SES group and ASD prevalence that has persisted over time even as ASD prevalence increased. They also found that ASD prevalence differences by race/ ethnicity were particularly pronounced in low-SES communities. However, even in the highest SES communities, some disparities persisted, particularly between White and Latino populations. Using similar data, Dickerson et al. (2017) also showed continued racial and ethnic disparities in prevalence, even after adjustment for census-block level parental education. Both studies suggest that while differences in SES may drive some of the observed racial and ethnic prevalence differences in ASD, they do not fully explain these differences.

6.2 Immigration Status Like SES, immigration status has been linked to ASD disparities with mixed findings. Croen, Grether, and Selvin (2002) found decreased ASD risk among US children whose parents were born in Mexico, and Fountain and Bearman (2011) linked ASD prevalence among California Latino children to state and federal policy that limited public service access for undocumented immigrants, showing that policy-level factors influence changing ASD risk among immigrants. Schieve et al. (2012) found a significantly lower ASD prevalence among Latino children with foreign-born parents than among those with US born parents. In Ratto, Anthony, et al.’s (2016) study, foreign-born Latina mothers (the majority of whom were from Mexico) reported that their children with ASD were diagnosed later and experienced greater delays between time of first concern to diagnosis, but this was largely accounted for by SES. Ratto et al. also found that the Latina mothers had less ASD knowledge even after controlling for education, in line with other research; but in this case, the Latina mothers’ children had been diagnosed more than four years prior to the study, suggesting a persistent lack of access to ASD information long after diagnosis.

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Conversely, using California Department of Developmental Services records and birth records, Becerra et al. (2014) investigated the influence of race/ethnicity and nativity on ASD diagnosis in Los Angeles County. They found that adjusted ASD risk was higher among children of foreign-born black, Filipino, and Vietnamese mothers compared to US-born White mothers, specifically with co-occurring intellectual disability and more impaired expressive language. Adjusted risk was also higher for US-born and Central/South American-born Latina mothers than US-born White mothers, but lower for Mexican-born Latina mothers. They found the highest risk among foreign-born black mothers and note consistency with recent studies that have found increased ASD prevalence in Black African, Somali, and Black Caribbean refugee and immigrant communities in the US and Europe, equal to or greater than White ASD prevalence (Hewitt et al., 2016; Keen, Reid, & Arnone, 2010; Magnusson et al., 2012).

6.3 Geography/Neighborhoods Autism prevalence and service use has notable geographic variation in the US. For instance, the 2014 National Health Interview Survey data showed regional variation in ASD prevalence and also marked variation by urbanicity, with highest prevalence in the most urban areas (Zablotsky, Black, Maenner, Schieve, & Blumberg, 2015). Likewise, the most recent ADDM data shows significant variation between surveillance sites, with highest rates in New Jersey and lowest in Arkansas (Baio et al., 2018). It is thought that most of this variation is due to ascertainment bias, since sites with higher prevalence rates usually had more complete access to educational records than other sites. More pertinent to the disparities issue, however, is that the sites with the highest ASD prevalence also had lower prevalence differences between White non-Latino, Latino, and AfricanAmerican children, suggesting that variation in ASD detection rates among racial and ethnic minority children may explain some of the regional variation in care. On smaller-scale level, a child’s neighborhood and neighbors may be important drivers of ASD service use and may explain some aspects of racial and ethnic disparities in ASD care. Palmer’s (2010) study of Latino ethnicity and school-district level differences in ASD prevalence showed that White: Latino prevalence differences persisted even after adjustment for schooldistrict-level SES. Likewise, using California birth records and educational data, another study showed that living in close proximity to another child

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with ASD increased the likelihood of ASD diagnosis, even after adjustment for family and area-level SES as well as mental health specialist distribution (Liu, King, & Bearman, 2010). Though that study did not look at race/ ethnicity specifically, another study conducted in Utah showed geographic “ASD hotspots” in which ASD diagnosis was more likely (Bakian, Bilder, Coon, & McMahon, 2015). Of note, these hotspots had higher proportions of high SES and White non-Latino families than the rest of Utah. This suggests that residential segregation may underlie ASD disparities.

6.4 Rural Areas Research is lacking on ASD prevalence in rural areas. However, the evidence that does exist suggests that children living in rural areas have poorer access to ASD care. For instance, a North Carolina study showed a younger age of ASD diagnosis in areas with more specialists and closer to a medical school, suggesting that rural/urban disparities may relate to provider maldistribution (Kalkbrenner et al., 2011). In a recent review of the rural issue, Antezana, Scarpa, Valdespino, Albright, and Richey (2017) reported that schools are the primary source of services for children with ASD; however, schools in general do not identify early or provide intensive services. Less awareness and screening may also be a particular problem in rural areas (Hoogsteen & Woodgate, 2013), and travel and cost issues may also impede timely diagnosis and access to care (Ashburner, Vickerstaff, Beetge, & Copley, 2016). Rural cultural values, such as independence and selfreliance, may also play a role in delayed access to care (Antezana et al., 2017). The relationship between racial and ethnic differences, urbanicity, and parent nativity may be complex. Some rural communities have high concentrations of racial and ethnic minority parents (e.g., agricultural workers), whereas other rural communities may have very little diversity. Further research is needed to understand how urbanicity impacts access to ASD care.

6.5 Adverse Childhood Events Several studies have recently investigated the relationship between ASD disparities and adverse childhood events (ACEs), defined as “traumatic early childhood experiences, that include maltreatment and other family stressors that in the absence of protective factors (e.g. positive relationship with primary caregiver) can disrupt brain development with lifelong consequences for health and functioning” (Berg, Shiu, Acharya, Stolbach, & Msall, 2016, p. 1124). Using data from the 2011e12 National Survey of

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Children’s Health, researchers have shown that children’s ASD status was significantly associated with higher probability of ACEs, after controlling for poverty (Berg et al., 2016); ACEs were negatively associated with the child’s mental health (Rigles, 2017); and the relationship of ASD and ACEs is moderated by family income and contingent on comorbid child mental health conditions (Kerns, Newschaffer, Berkowitz, & Lee, 2017). Berg, Acharya, Shiu, and Msall (2017) found that ACEs exposure led to moderate delays in ASD diagnosis and services.

7. ADDRESSING ASD DISPARITIES: PROMISING PRACTICES With increased attention to ASD disparities, researchers have identified promising practices to reduce disparities. Researchers have developed cultural and linguistic adaptations of ASD diagnostic and screening tools (Harris, Barton, & Albert, 2014; Maga~ na & Smith, 2013; Vanegas, Maga~ na, Morales, & McNamara, 2016). Janvier et al. (2016) found that early childcare providers in underserved communities can effectively screen for ASD in young children in their preschool and daycare settings using traditional screening tools without formal training. Similarly, researchers have made the case that social workers (Dababnah, Parish, Turner Brown, & Hooper, 2011) and occupational therapists (Gibbs, 2017) who have contact with families of young children might support in identification and appropriate referrals. There have also been efforts to improve pediatric primary care provider training (e.g. Swanson et al., 2013), but as previously identified, there are multiple barriers to improving primary care provider use of screening tools and recognition of early signs in children from racial and ethnic minority groups. Miller et al. (2011) found that a partnership between healthcare providers and ASD specialists led to more systematic and effective screening. In general, improving healthcare access and quality, such as access to a medical home and use of family-centered practices, can reduce ASD disparities (Fueyo, Caldwell, Mattern, Zahid, & Foley, 2015; Kogan et al., 2009). Additionally, since cost of screening and diagnostic tools may be a barrier in low-resource settings, increasing access to publicly-available tools is important (Durkin et al., 2015). Increased awareness of ASD disparities has led to efforts to improve parent identification of ASD and knowledge of services and parent advocacy (Cohen, 2013). Feinberg et al. (2016) found that Family Navigation, an

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adapted form of patient navigation, is a promising method for improving the timing of ASD diagnosis in underserved families. Patient navigation is a lay case management model that is implemented in a limited timeframe to support patients to problem solve barriers to healthcare. Feinberg et al.’s (2016) adapted model utilizes lay support for low-income families of children identified as at risk for having ASD, who are navigated through the process of evaluation and, if diagnosed with ASD, into appropriate services, to reduce rates of ‘falling through the cracks’ in complex systems of care. Maga~ na et al.’s (2017) culturally-tailored parent ASD educational intervention, based on a Promotora de Salud model, has been shown to improve parent empowerment related outcomes and is currently being implemented across settings. Researchers have also begun to develop interventions that are designed to be carried out in preschools, elementary schools, and other community-based settings that, if widely adopted, have the potential to reduce disparities by eliminating system-level access barriers (Boyd et al., 2018; Broder-Fingert et al., 2018; Dykstra, Boyd, Watson, Crais, & Baranek, 2012; Kasari & Smith, 2013; Parsons & Kasari, 2013).

8. CONCLUSION As ASD prevalence has continued to increase, the issue of disparities warrants further attention. Much remains unknown, especially regarding Asian/Pacific Islander children, American Indian/Alaska Native children, and children from other smaller racial and ethnic and cultural groups. In addition to the need for a better understanding of the causes of ASD disparities, more research is needed that focuses on addressing and reducing them. Such efforts will be most effective if they take into account cultural and linguistic strengths (Cohen & Miguel, 2018; Cohen, 2013; Kapp, 2011; Ravindran & Myers, 2012; Salkas, Maga~ na, Marques, & Mirza, 2016). For example, programs and interventions that draw upon cultural and familial strengths, such as family cohesion, social supports, and religiosity, will avoid a deficits based view, lead to better family participation, and produce more effective and disseminable outcomes. In this review, we have shown that disparities are caused by multiple factors at both structural and interactional levels; therefore, efforts to reduce them are needed at multiple levels, including parent education, widespread adoption of screening in healthcare and community settings, and effective interventions developed for community and school settings.

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ACKNOWLEDGMENTS The writing of this article was made possible by support from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) grant 90AR5023. The contents do not necessarily represent the policy or views of NIDILRR, the Administration for Community Living, or the Department of Health and Human Services.

REFERENCES Agency for Healthcare Research and Quality. (2017). 2016 national healthcare quality and disparities report. Rockville, MD. Al-Qabandi, M., Gorter, J. W., & Rosenbaum, P. (2011). Early autism detection: Are we ready for routine screening? Pediatrics, 128(1), e211ee217. https://doi.org/10.1542/ peds.2010-1881. American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders: DSM-5. Washington, DC: American Psychiatric Association. Angell, A. M., Frank, G., & Solomon, O. (2016). Latino families’ experiences with autism services: Disparities, capabilities, and occupational justice. OTJR: Occupation, Participation, Health, 36(4), 195e203. https://doi.org/10.1177/1539449216666062. Angell, A. M., & Solomon, O. (2014). The social life of health records: Understanding families’ experiences of autism. Social Science and Medicine, 117, 50e57. https://doi.org/ 10.1016/j.socscimed.2014.07.020. Angell, A. M., & Solomon, O. (2017). “If I was a different ethnicity, would she treat me the same?”: Latino parents’ experiences obtaining autism services. Disability & Society, 32(8), 1142e1164. https://doi.org/10.1080/09687599.2017.1339589. Angell, A. M., & Solomon, O. (2018). Understanding parents’ concerns about their children with autism taking public school transportation in Los Angeles County. Autism, 22(4), 401e413. https://doi.org/10.1177/1362361316680182. Antezana, L., Scarpa, A., Valdespino, A., Albright, J., & Richey, J. A. (2017). Rural trends in diagnosis and services for autism spectrum disorder. Frontiers in Psychology, 8, 1e5. https://doi.org/10.3389/fpsyg.2017.00590. Ashburner, J., Vickerstaff, S., Beetge, J., & Copley, J. (2016). Remote versus face-to-face delivery of early intervention programs for children with autism spectrum disorders: Perceptions of rural families and service providers. Research in Autism Spectrum Disorders, 23, 1e14. https://doi.org/10.1016/j.rasd.2015.11.011. Baio, J., Wiggins, L., Christensen, D. L., Maenner, M. J., Daniels, J., Warren, Z., … Dowling, N. F. (2018). Prevalence of autism spectrum disorder among children aged 8 years d autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2014. MMWR Surveillance Summary, 67(No. SS 6), 1e14. Retrieved from http://www.cdc.gov/mmwr/preview/mmwrhtml/ss6302a1.htm?s_ cid¼ss6302a1_w. Bakian, A. V., Bilder, D. A., Coon, H., & McMahon, W. M. (2015). Spatial relative risk patterns of autism spectrum disorders in Utah. Journal of Autism and Developmental Disorders, 45(4), 988e1000. https://doi.org/10.1007/s10803-014-2253-0. Baranek, G. T., Watson, L. R., Turner-Brown, L., Field, S. H., Crais, E. R., Wakeford, L., … Reznick, J. S. (2015). Preliminary efficacy of Adapted Responsive Teaching for infants at risk of autism spectrum disorder in a community sample. Autism Research and Treatment, 1e16. https://doi.org/10.1155/2015/386951. Becerra, T. A., von Ehrenstein, O. S., Heck, J. E., Olsen, J., Arah, O. A., Jeste, S. S., … Ritz, B. (2014). Autism spectrum disorders and race, ethnicity, and nativity: A population-based study. Pediatrics, 134(1), e63ee71. https://doi.org/10.1542/ peds.2013-3928.

A Review of Diagnosis and Service Disparities Among Children

169

Berg, K. L., Acharya, K., Shiu, C.-S., & Msall, M. E. (2017). Delayed diagnosis and treatment among children with autism who experience adversity. Journal of Autism and Developmental Disorders, 48(1), 45e54. https://doi.org/10.1007/s10803-017-3294-y. Berg, K. L., Shiu, C.-S., Acharya, K., Stolbach, B. C., & Msall, M. E. (2016). Disparities in adversity among children with autism spectrum disorder: A population-based study. Developmental Medicine and Child Neurology, 58(11), 1124e1131. https://doi.org/ 10.1111/dmcn.13161. Bernier, R., Mao, A., & Yen, J. (2010). Psychopathology, families, and culture: Autism. Child and Adolescent Psychiatric Clinics of North America, 19(4), 855e867. https://doi.org/ 10.1016/j.chc.2010.07.005. Bhasin, T. K., & Schendel, D. (2007). Sociodemographic risk factors for autism in a US metropolitan area. Journal of Autism and Developmental Disorders, 37(4), 667e677. https://doi.org/10.1007/s10803-006-0194-y. Bhopal, R., & Donaldson, L. (1998). White, European, Western, Caucasian, or what? Inappropriate labeling in research on race, ethnicity, and health. American Journal of Public Health, 88(9), 1303e1307. https://doi.org/10.2105/AJPH.88.9.1303. Bickel, J., Bridgemohan, C., Sideridis, G., & Huntington, N. (2015). Child and family characteristics associated with age of diagnosis of an autism spectrum disorder in a tertiary care setting. Journal of Developmental and Behavioral Pediatrics, 36(1), 1e7. https://doi.org/ 10.1097/DBP.0000000000000117. Bilaver, L. A., Cushing, L. S., & Cutler, A. T. (2016). Prevalence and correlates of educational intervention utilization among children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 46, 561e571. https://doi.org/10.1007/s10803015-2598-z. Bishop-Fitzpatrick, L., & Kind, A. J. H. (2017). A scoping review of health disparities in autism spectrum disorder. Journal of Autism and Developmental Disorders, 47(11), 3380e3391. https://doi.org/10.1007/s10803-017-3251-9. Bishop, S. L., Richler, J., Cain, A. C., & Lord, C. (2007). Predictors of perceived negative impact in mothers of children with autism spectrum disorder. American Journal on Mental Retardation, 112(6), 450e461. https://doi.org/10.1352/0895-8017(2007)112[450: POPNII]2.0.CO;2. Blacher, J., Cohen, S. R., & Azad, G. (2014). In the eye of the beholder: Reports of autism symptoms by Anglo and Latino mothers. Research in Autism Spectrum Disorders, 8(12), 1648e1656. https://doi.org/10.1016/j.rasd.2014.08.017. Blanche, E. I., Diaz, J., Barretto, T., & Cermak, S. A. (2015). Caregiving experiences of Latino families with children with autism spectrum disorder. American Journal of Occupational Therapy, 69(5), 1e11. https://doi.org/10.5014/ajot.2015.017848. Boyd, B. A., Watson, L. R., Reszka, S. S., Sideris, J., Alessandri, M., Baranek, G. T., … Belardi, K. (2018). Efficacy of the ASAP intervention for preschoolers with ASD: A cluster randomized controlled trial. Journal of Autism and Developmental Disorders, 0(0), 0. https://doi.org/10.1007/s10803-018-3584-z. Broder-Fingert, S., Carter, A., Pierce, K., Stone, W. L., Wetherby, A., Scheldrick, C., … Feinberg, E. (2018). Implementing systems-based innovations to improve access to early screening, diagnosis, and treatment services for children with autism spectrum disorder: An Autism Spectrum Disorder Pediatric, Early Detection, Engagement, and Services network study. Autism, 1e12. https://doi.org/10.1177/ 1362361318766238. Broder-Fingert, S., Shui, A., Pulcini, C. D., Kurowski, D., & Perrin, J. M. (2013). Racial and ethnic differences in subspecialty service use by children with autism. Pediatrics, 132(1), 94e100. https://doi.org/10.1542/peds.2012-3886.

170

Amber M. Angell et al.

Broder-Fingert, S., Silva, C., Silverstein, M., & Feinberg, E. (2017). Participant characteristics in autism intervention studies. Autism. https://doi.org/10.1177/1362361317722306, 136236131772230. Brookman-Frazee, L., Drahota, A., Stadnick, N., & Palinkas, L. A. (2012). Therapist perspectives on community mental health services for children with autism spectrum disorders. Administration and Policy in Mental Health, 39(5), 365e373. https://doi.org/10.1007/ s10488-011-0355-y. Burkett, K., Morris, E., Manning-Courtney, P., Anthony, J., & Shambley-Ebron, D. (2015). African American families on autism diagnosis and treatment: The influence of culture. Journal of Autism and Developmental Disorders, 45(10), 3244e3254. https://doi.org/ 10.1007/s10803-015-2482-x. Carbone, P. S., Behl, D. D., Azor, V., & Murphy, N. a. (2010). The medical home for children with autism spectrum disorders: Parent and pediatrician perspectives. Journal of Autism and Developmental Disorders, 40(3), 317e324. https://doi.org/10.1007/s10803009-0874-5. Carbone, P. S., Murphy, N. A., Norlin, C., Azor, V., Sheng, X., & Young, P. C. (2013). Parent and pediatrician perspectives regarding the primary care of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43(4), 964e972. https://doi.org/10.1007/s10803-012-1640-7. Carr, T., Shih, W., Lawton, K., Lord, C., King, B., & Kasari, C. (2016). The relationship between treatment attendance, adherence, and outcome in a caregiver-mediated intervention for low-resourced families of young children with autism spectrum disorder. Autism, 20(6), 643e652. https://doi.org/10.1177/1362361315598634. Cohen, S. R. (2013). Advocacy for the “Abandonados”: Harnessing cultural beliefs for latino families and their children with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 10(1), 71e78. https://doi.org/10.1111/jppi.12021. Cohen, S. R., & Miguel, J. (2018). Amor and social stigma: ASD beliefs among immigrant Mexican parents. Journal of Autism and Developmental Disorders, 0(0), 1e15. https:// doi.org/10.1007/s10803-017-3457-x. Cohen, L., Solomon, T., Joe, J., Haring, R., Randall, L., DeRoins, D., … Villavicencio, J. (2012). Native American developmental disabilities needs assessment. Silver Springs. Retrieved from https://www.aucd.org/docs/publications/native_am_needs_assmt_sm. pdf. Colbert, A. M., Webber, J., & Graham, R. (2017). Factors that influence autism knowledge in Hispanic cultures: A pilot study. Journal of Racial and Ethnic Health Disparities, 4(2), 156e164. https://doi.org/10.1007/s40615-016-0213-4. Collins, F. S. (2004). What we do and don’t know about “race”, “ethnicity”, genetics and health at the dawn of the genome era. Nature Genetics, 36(11 SUPPL. 1), 13e15. https://doi.org/10.1038/ng1436. Constantino, J. N., & Charman, T. (2016). Diagnosis of autism spectrum disorder: Reconciling the syndrome, its diverse origins, and variation in expression. The Lancet Neurology, 15(3), 279e291. https://doi.org/10.1016/S1474-4422(15)00151-9. Cooper, R. (2002). A note on the biological concept of race and its application in epidemiologic research. In T. A. LaVeist (Ed.), Race, ethnicity, and health: A public health reader (pp. 99e114). San Francisco: Jossey-Bass. Corsello, C. M., Akshoomoff, N., & Stahmer, A. C. (2013). Diagnosis of autism spectrum disorders in 2-year-olds: A study of community practice. The Journal of Child Psychology and Psychiatry and Allied Disciplines, 54(2), 178e185. https://doi.org/10.1111/j.14697610.2012.02607.x. Coutinho, M. J., & Oswald, D. P. (2000). Disproportionate representation in special education: A synthesis and recommendations. Journal of Child and Family Studies, 9(2), 135e156. https://doi.org/10.1023/A:1009462820157.

A Review of Diagnosis and Service Disparities Among Children

171

Crais, E. R., McComish, C. S., Humphreys, B. P., Watson, L. R., Baranek, G. T., Reznick, J. S., … Earls, M. (2014). Pediatric healthcare professionals’ views on autism spectrum disorder screening at 12-18 months. Journal of Autism and Developmental Disorders, 44(9), 2311e2328. https://doi.org/10.1007/s10803-014-2101-2. Croen, L. a., Grether, J. K., & Selvin, S. (2002). Descriptive epidemiology of Autism in a California population: Who is at risk? Journal of Autism and Developmental Disorders, 32(3), 217e224. https://doi.org/10.1023/A:1015405914950. Cuccaro, M. L., Brinkley, J., Abramson, R. K., Hall, A., Wright, H. H., Hussman, J. P., … Pericak-Vance, M. A. (2007). Autism in African American families: Clinical-phenotypic findings. American Journal of Medical Genetics, 144B, 1022e1026. https://doi.org/10.1002/ajmg.b.30535. Dababnah, S., Parish, S. L., Turner Brown, L., & Hooper, S. R. (2011). Early screening for autism spectrum disorders: A primer for social work practice. Children and Youth Services Review, 33(2), 265e273. https://doi.org/10.1016/j.childyouth.2010.09.009. Daley, T. C. (2004). From symptom recognition to diagnosis: Children with autism in urban India. Social Science and Medicine, 58(7), 1323e1335. https://doi.org/10.1016/S02779536(03)00330-7. Daniels, A. M., & Mandell, D. S. (2014). Explaining differences in age at autism spectrum disorder diagnosis: A critical review. Autism, 18(5), 583e597. https://doi.org/ 10.1177/1362361313480277. De La Torre-Ubieta, L., Won, H., Stein, J. L., & Geschwind, D. H. (2016). Advancing the understanding of autism disease mechanisms through genetics. Nature Medicine, 22(4), 345e361. https://doi.org/10.1038/nm.4071. Dickerson, A. S., Rahbar, M. H., Pearson, D. A., Kirby, R. S., Bakian, A. V., Bilder, D. A., … Slay Wingate, M. (2017). Autism spectrum disorder reporting in lower socioeconomic neighborhoods. Autism, 21(4), 470e480. https://doi.org/10.1177/ 1362361316650091. Dobson, S., Upadhyaya, S., McNeil, J., Venkateswaran, S., & Gilderdale, D. (2001). Developing an information pack for the Asian carers of people with autism spectrum disorders. International Journal of Language & Communication Disorders, 36(s1), 216e221. https:// doi.org/10.3109/13682820109177887. Donohue, M. R., Childs, A. W., Richards, M., & Robins, D. L. (2017). Race influences parent report of concerns about symptoms of autism spectrum disorder. Autism. https://doi.org/10.1177/1362361317722030. DuBay, M., Watson, L. R., & Zhang, W. (2017). In search of culturally appropriate autism interventions: Perspectives of Latino caregivers. Journal of Autism and Developmental Disorders, 0(0), 1e17. https://doi.org/10.1007/s10803-017-3394-8. Durkin, M. S., Elsabbagh, M., Barbaro, J., Gladstone, M., Happe, F., Hoekstra, R. A., … Shih, A. (2015). Autism screening and diagnosis in low resource settings: Challenges and opportunities to enhance research and services worldwide. Autism Research, 8(5), 473e476. https://doi.org/10.1002/aur.1575. Durkin, M. S., Maenner, M. J., Baio, J., Christensen, D., Daniels, J., Fitzgerald, R., … Yeargin-Allsopp, M. (2017). Autism spectrum disorder among US children (2002e2010): Socioeconomic, racial, and ethnic disparities. American Journal of Public Health, 107(11), 1818e1826. https://doi.org/10.2105/AJPH.2017.304032. Durkin, M. S., Maenner, M. J., Meaney, F. J., Levy, S. E., DiGuiseppi, C., Nicholas, J. S., … Schieve, L. A. (2010). Socioeconomic inequality in the prevalence of autism spectrum disorder: Evidence from a U.S. cross-sectional study. PLoS One, 5(7), 1e8. https://doi.org/10.1371/journal.pone.0011551. Dyches, T. T., Wilder, L. K., Sudweeks, R. R., Obiakor, F. E., & Algozzine, B. (2004). Multicultural issues in autism. Journal of Autism and Developmental Disorders, 34(2), 211e222. https://doi.org/10.1023/B:JADD.0000022611.80478.73.

172

Amber M. Angell et al.

Dykstra, J. R., Boyd, B. A., Watson, L. R., Crais, E. R., & Baranek, G. T. (2012). The impact of the Advancing Social-communication and Play (ASAP) intervention on preschoolers with autism spectrum disorder. Autism, 16(1), 27e44. https://doi.org/10.1177/ 1362361311408933. Emerson, N. D., Morrell, H. E. R., & Neece, C. (2016). Predictors of age of diagnosis for children with autism spectrum disorder: The role of a consistent source of medical care, race, and condition severity. Journal of Autism and Developmental Disorders, 46(1), 127e138. https://doi.org/10.1007/s10803-015-2555-x. Estes, A., Munson, J., Rogers, S. J., Greenson, J., Winter, J., & Dawson, G. (2015). Longterm outcomes of early intervention in 6-year-old children with autism spectrum disorder. Journal of the American Academy of Child & Adolescent Psychiatry, 54(7), 580e 587. https://doi.org/10.1016/j.jaac.2015.04.005. Feinberg, E., Abufhele, M., Sandler, J., Augustyn, M., Cabral, H., Chen, N., … Silverstein, M. (2016). Reducing disparities in timely autism diagnosis through Family Navigation: Results from a randomized pilot trial. Psychiatric Services, 67(8), 912e915. https://doi.org/10.1176/appi.ps.201500162. Flores, G., & Tomany-Korman, S. C. (2008). Racial and ethnic disparities in medical and dental health, access to care, and use of services in US children. Pediatrics, 121(2), e286ee298. https://doi.org/10.1542/peds.2007-1243. Fountain, C., & Bearman, P. (2011). Risk as social context: Immigration policy and autism in California. Sociological Forum, 26(2), 215e240. https://doi.org/10.1111/j.15737861.2011.01238.x. Fountain, C., King, M. D., & Bearman, P. S. (2011). Age of diagnosis for autism: Individual and community factors across 10 birth cohorts. Journal of Epidemiology and Community Health, 65(6), 503e510. https://doi.org/10.1136/jech.2009.104588.Age. Fueyo, M., Caldwell, T., Mattern, S. B., Zahid, J., & Foley, T. (2015). The health home: A service delivery model for autism and intellectual disability. Psychiatric Services, 66(11), 1135e1137. https://doi.org/10.1176/appi.ps.201400443. Gibbs, V. D. (2017). Detection and treatment of autism spectrum disorder by occupational therapy practitioners: Addressing racial disparity in diagnosis. American Journal of Occupational Therapy, 71(3). https://doi.org/10.5014/ajot.2017.016303, 7103360010p1e 7103360010p4. Goin-Kochel, R. P., Mackintosh, V. H., & Myers, B. J. (2006). How many doctors does it take to make an autism spectrum diagnosis? Autism, 10(5), 439e451. https://doi.org/ 10.1177/1362361306066601. Golnik, A., Ireland, M., & Borowsky, I. W. (2009). Medical homes for children with autism: A physician survey. Pediatrics, 123(3), 966e971. https://doi.org/10.1542/peds.20081321. Gordon-Lipkin, E., Foster, J., & Peacock, G. (2016). Whittling down the wait time: Exploring models to minimize the delay from initial concern to diagnosis and treatment of autism spectrum disorder. Pediatric Clinics of North America, 63(5), 851e859. https:// doi.org/10.1016/j.pcl.2016.06.007. Gourdine, R. M., Baffour, T. D., & Teasley, M. (2011). Autism and the African American community. Social Work in Public Health, 26(4), 454e470. https://doi.org/10.1080/ 19371918.2011.579499. Grinker, R. R., Chambers, N., Njongwe, N., Lagman, A. E., Guthrie, W., Stronach, S., … Wetherby, A. M. (2012). “Communities” in community engagement: Lessons learned from autism research in South Korea and South Africa. Autism Research, 5(3), 201e210. https://doi.org/10.1002/aur.1229. Harris, B., Barton, E. E., & Albert, C. (2014). Evaluating autism diagnostic and screening tools for cultural and linguistic responsiveness. Journal of Autism and Developmental Disorders, 44(6), 1275e1287. https://doi.org/10.1007/s10803-013-1991-8.

A Review of Diagnosis and Service Disparities Among Children

173

Harstad, E., Huntington, N., Bacic, J., & Barbaresi, W. (2013). Disparity of care for children with parent-reported autism spectrum disorders. Academic Pediatrics, 13(4), 334e339. https://doi.org/10.1016/j.acap.2013.03.010. Hewitt, A., Hall-Lande, J., Hamre, K., Esler, A. N., Punyko, J., Reichle, J., & Gulaid, A. A. (2016). Autism spectrum disorder (ASD) prevalence in Somali and non-Somali children. Journal of Autism and Developmental Disorders, 46(8), 2599e2608. https://doi.org/ 10.1007/s10803-016-2793-6. Hoogsteen, L., & Woodgate, R. L. (2013). Embracing autism in Canadian rural communities. Australian Journal of Rural Health, 21(3), 178e182. https://doi.org/ 10.1111/ajr.12030. Ijalba, E. (2016). Hispanic immigrant mothers of young children with autism spectrum disorders: How do they understand and cope with autism? American Journal of Speech-Language Pathology, 25(2), 200e213. https://doi.org/10.1044/2015_AJSLP-13-0017. Iland, E. D., Weiner, I., & Murawski, W. W. (2012). Obstacles faced by Latina mothers of children with autism. Californian Journal of Health Promotion, 10, 25e36. Jang, J., Matson, J. L., Cervantes, P. E., & Konst, M. J. (2014). The relationship between ethnicity and age of first concern in toddlers with autism spectrum disorder. Research in Autism Spectrum Disorders, 8(7), 925e932. https://doi.org/10.1016/j.rasd.2014.04.003. Janvier, Y. M., Harris, J. F., Coffield, C. N., Louis, B., Xie, M., Cidav, Z., & Mandell, D. S. (2016). Screening for autism spectrum disorder in underserved communities: Early childcare providers as reporters. Autism, 20(3), 364e373. https://doi.org/10.1177/ 1362361315585055. Jegatheesan, B. (2009). Cross-cultural issues in parent-professional interactions: A qualitative study of perceptions of Asian American mothers of children with developmental disabilities. Research and Practice for Persons with Severe Disabilities, 34(3/4), 123e136. Retrieved from http://search.ebscohost.com/login.aspx?direct¼true&db¼ a3h&AN¼58638009&site¼ehost-live. Jegatheesan, B. (2011). Multilingual development in children with autism: Perspectives of South Asian Muslim immigrant parents on raising a child with a communicative disorder in multilingual contexts. Bilingual Research Journal, 34(2), 185e200. https://doi.org/ 10.1080/15235882.2011.597824. Jegatheesan, B., Fowler, S., & Miller, P. J. (2010). From symptom recognition to services: How South Asian Muslim immigrant families navigate autism. Disability & Society, 25(7), 797e811. https://doi.org/10.1080/09687599.2010.520894. Jegatheesan, B., Miller, P. J., & Fowler, S. A. (2010). Autism from a religious perspective: A study of parental beliefs in South Asian Muslim immigrant families. Focus on Autism and Other Developmental Disabilities, 25(2), 98e109. https://doi.org/10.1177/ 1088357610361344. Jimenez, M. E., Barg, F. K., Guevara, J. P., Gerdes, M., & Fiks, A. G. (2012). Barriers to evaluation for early intervention services: Parent and early intervention employee perspectives. Academic Pediatrics, 12(6), 551e557. https://doi.org/10.1016/j.acap.2012.08.006. Jimenez, M. E., Martinez Alcaraz, E., Williams, J., & Strom, B. L. (2017). Access to developmental pediatrics evaluations for at-risk children. Journal of Developmental and Behavioral Pediatrics, 38(3), 228e232. https://doi.org/10.1097/DBP.0000000000000427. Kalkbrenner, A. E., Daniels, J. L., Emch, M., Morrissey, J., Poole, C., & Chen, J.-C. (2011). Geographic access to health services and diagnosis with an autism spectrum disorder. Annals of Epidemiology, 21(4), 304e310. https://doi.org/10.1016/j.annepidem.2010.11.010. Kang-Yi, C. D., Grinker, R. R., & Mandell, D. S. (2013). Korean culture and autism spectrum disorders. Journal of Autism and Developmental Disorders, 43(3), 503e520. https:// doi.org/10.1007/s10803-012-1570-4. Kapp, S. K. (2011). Navajo and autism: The beauty of harmony. Disability & Society, 26(5), 583e595. https://doi.org/10.1080/09687599.2011.589192.

174

Amber M. Angell et al.

Karp, E. A., Dudovitz, R., Nelson, B. B., Shih, W., Gulsrud, A., Orlich, F., … Kuo, A. A. (2018). Family characteristis and children’s receipt of autism services in low-resources families. Pediatrics, 141(Suppl. 4), S280eS286. https://doi.org/10.1542/peds.20164300D. Kasari, C., Lawton, K., Shih, W., Barker, T. V., Landa, R. J., Lord, C., … Senturk, D. (2014). Caregiver-mediated intervention for low-resourced preschoolers with autism: An RCT. Pediatrics, 134(1), e72ee79. https://doi.org/10.1542/peds.2013-3229. Kasari, C., Siller, M., Huynh, L. N., Shih, W., Swanson, M., Hellemann, G. S., & Sugar, C. a. (2014). Randomized controlled trial of parental responsiveness intervention for toddlers at high risk for autism. Infant Behavior and Development, 37(4), 711e721. https:// doi.org/10.1016/j.infbeh.2014.08.007. Kasari, C., & Smith, T. (2013). Interventions in schools for children with autism spectrum disorder: Methods and recommendations. Autism, 17(3), 254e267. https://doi.org/ 10.1177/1362361312470496. Keen, D. V., Reid, F. D., & Arnone, D. (2010). Autism, ethnicity and maternal immigration. British Journal of Psychiatry, 196(4), 274e281. https://doi.org/10.1192/bjp.bp.109.065490. Kerns, C. M., Newschaffer, C. J., Berkowitz, S., & Lee, B. K. (2017). Brief Report: Examining the association of autism and adverse childhood experienes in the National Survey of Children’s Health: The important role of income and co-occurring mental health conditions. Journal of Autism and Developmental Disorders, 47(7), 2275e2281. https:// doi.org/10.1007/s10803-017-3111-7. Kim, Y. S., Leventhal, B. L., Koh, Y.-J., Fombonne, E., Laska, E., Lim, E.C., … Grinker, R. R. (2011). Prevalence of autism spectrum disorders in a total population sample. American Journal of Psychiatry, 168, 904e912. https://doi.org/10.1176/ appi.ajp.2011.10101532. Kogan, M. D., Blumberg, S. J., Schieve, L. A., Boyle, C. A., Perrin, J. M., Ghandour, R. M., … van Dyck, P. C. (2009). Prevalence of parent-reported diagnosis of autism spectrum disorder among children in the US, 2007. Pediatrics, 124(5), 1395e1403. https://doi.org/10.1542/peds.2009-1522. Kogan, M. D., Strickland, B. B., Blumberg, S. J., Singh, G. K., Perrin, J. M., & van Dyck, P. C. (2008). A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005e2006. Pediatrics, 122(6), e1149ee1158. https://doi.org/10.1542/peds.2008-1057. Lajonchere, C. M., Wheeler, B. Y., Valente, T. W., Kreutzer, C., Munson, A., Narayanan, S., … Hwang, D. (2016). Strategies for disseminating information on biomedical research on autism to Hispanic parents. Journal of Autism and Developmental Disorders, 46(3), 1038e1050. https://doi.org/10.1007/s10803-015-2649-5. Landa, R. J. (2018). Efficacy of early interventions for infants and young children with, and at risk for, autism spectrum disorders. International Review of Psychiatry. https://doi.org/ 10.1080/09540261.2018.1432574. Leigh, J. P., Grosse, S. D., Cassady, D., Melnikow, J., & Hertz-Picciotto, I. (2016). Spending by California’s Department of Developmental Services for persons with autism across demographic and expenditure categories. PLoS One, 11(3), 1e23. https://doi.org/ 10.1371/journal.pone.0151970. Lindblom, A. (2014). Under-detection of autism among first nations children in British Columbia, Canada. Disability & Society, 29(8), 1248e1259. https://doi.org/10.1080/ 09687599.2014.923750. Liptak, G. S., Benzoni, L. B., Mruzek, D. W., Nolan, K. W., Thingvoll, M. A., Wade, C. M., & Fryer, G. E. (2008). Disparities in diagnosis and access to health services for children with autism: Data from the National Survey of Children’s Health. Journal of Developmental and Behavioral Pediatrics, 29(3), 152e160. https://doi.org/10.1097/ DBP.0b013e318165c7a0.

A Review of Diagnosis and Service Disparities Among Children

175

Liu, K.-Y., King, M., & Bearman, P. S. (2010). Social influence and the autism epidemic. American Journal of Sociology, 115(5), 1387e1434. https://doi.org/10.1086/651448. Lopez, K. (2014). Sociocultural perspectives of Latino children with autism spectrum disorder. Best Practices in Mental Health, 10(2), 15e31. Luong, J., Yoder, M. K., & Canham, D. (2009). Southeast Asian parents raising a child with autism: A qualitative investigation of coping styles. The Journal of School Nursing, 25(3), 222e229. https://doi.org/10.1177/1059840509334365. Maga~ na, S. M., Lopez, K., Aguinaga, A., & Morton, H. (2013). Access to diagnosis and treatment services among Latino children with autism spectrum disorders. Intellectual and Developmental Disabilities, 51(3), 141e153. https://doi.org/10.1352/1934-955651.3.141. Maga~ na, S. M., Lopez, K., & Machalicek, W. (2017). Parents taking action: A psycho-educational intervention for Latino parents of children with autism spectrum disorder. Family Process, 56(1), 59e74. https://doi.org/10.1111/famp.12169. Maga~ na, S. M., Parish, S. L., Rose, R. a., Timberlake, M., & Swaine, J. G. (2012). Racial and ethnic disparities in quality of health care among children with autism and other developmental disabilities. Intellectual and Developmental Disabilities, 50(4), 287e299. https:// doi.org/10.1352/1934-9556-50.4.287. Maga~ na, S. M., Parish, S. L., & Son, E. (2016). Functional severity and Latino ethnicity in specialty services for children with autism spectrum disorder. Journal of Intellectual Disability Research, 60(5), 424e434. https://doi.org/10.1111/jir.12293. Maga~ na, S. M., & Smith, L. E. (2013). The use of the autism diagnostic interview-revised with a latino population of adolescents and adults with autism. Journal of Autism and Developmental Disorders, 43(5), 1098e1105. https://doi.org/10.1007/s10803-012-1652-3. Magnusson, D. M., Minkovitz, C. S., Kuhlthau, K. A., Caballero, T. M., & Mistry, K. B. (2017). Beliefs regarding development and early intervention among low-income African American and Hispanic nothers. Pediatrics, 140(5). https://doi.org/10.1542/ peds.2017-2059. e20172059. Magnusson, C., Rai, D., Goodman, A., Lundberg, M., Idring, S., Svensson, A., … Dalman, C. (2012). Migration and autism spectrum disorder: Population-based study. British Journal of Psychiatry, 201(02), 109e115. https://doi.org/ 10.1192/bjp.bp.111.095125. Mandell, D. S., Ittenbach, R. F., Levy, S. E., & Pinto-Martin, J. A. (2007). Disparities in diagnoses received prior to a diagnosis of autism spectrum disorder. Journal of Autism and Developmental Disorders, 37(9), 1795e1802. https://doi.org/10.1007/s10803-0060314-8. Mandell, D. S., Listerud, J., Levy, S. E., & Pinto-Martin, J. A. (2002). Race differences in the age at diagnosis among Medicaid-eligible children with autism. Journal of the American Academy of Child and Adolescent Psychiatry, 41(12), 1447e1453. https://doi.org/ 10.1097/01.CHI.0000024863.60748.53. Mandell, D. S., & Novak, M. (2005). The role of culture in families’ treatment decisions for children with autism spectrum disorders. Mental Retardation and Developmental Disabilities Research Reviews, 11(2), 110e115. https://doi.org/10.1002/mrdd.20061. Mandell, D. S., Novak, M. M., & Zubritsky, C. D. (2005). Factors associated with age of diagnosis among children with autism spectrum disorders. Pediatrics, 116(6), 1480e 1486. https://doi.org/10.1542/peds.2005-0185. Mandell, D. S., & Salzer, M. S. (2007). Who joins support groups among parents of children with autism? Autism, 11(2), 111e122. https://doi.org/10.1177/1362361307077506.Who. Mandell, D. S., Wiggins, L. D., Carpenter, L. A., Daniels, J., DiGuiseppi, C., Durkin, M. S., … Kirby, R. S. (2009). Racial/ethnic disparities in the identification of children with autism spectrum disorders. American Journal of Public Health, 99(3), 493e 498. https://doi.org/10.2105/AJPH.2007.131243.

176

Amber M. Angell et al.

Matson, J. L., & Jang, J. (2014). Conceptualizing skills that are most critical in diagnosing autism. Research in Autism Spectrum Disorders, 8(8), 968e973. https://doi.org/10.1016/ j.rasd.2014.04.011. McPheeters, M. L., Weitlauf, A., Vehorn, A., Taylor, C., Sathe, N. A., Krishnaswami, S., … Warren, Z. E. (2016). Screening for autism spectrum disorder in young children: A systematic evidence review for the U.S. Preventive services Task Force. Rockville, MD. Miller, J. S., Gabrielsen, T., Villalobos, M., Alleman, R., Wahmhoff, N., Carbone, P. S., & Segura, B. (2011). The each child study: Systematic screening for autism spectrum disorders in a pediatric setting. Pediatrics, 127(5), 866e871. https://doi.org/10.1542/ peds.2010-0136. Montes, G., & Halterman, J. S. (2011). White-black disparities in family-centered care among children with autism in the United States: Evidence from the NS-CSHCN 2005-2006. Academic Pediatrics, 11(4), 297e304. https://doi.org/10.1016/ j.acap.2011.02.002. Morrier, M. J., & Hess, K. L. (2012). Ethnic differences in autism eligibility in the United States public schools. The Journal of Special Education, 46(1), 49e63. https://doi.org/ 10.1177/0022466910372137. National Research Council. (2002). Minority students in special and gifted education. In M. S. Donovan, & C. T. Cross (Eds.), Committee on minority Representation in special education. Washington, DC: National Academy Press. https://doi.org/10.17226/10128. Palmer, R. F., Walker, T., Mandell, D. S., Bayles, B., & Miller, C. S. (2010). Explaining low rates of autism among hispanic schoolchildren in Texas. American Journal of Public Health, 100(2), 270e272. https://doi.org/10.2105/AJPH.2008.150565. Parish, S. L., Maga~ na, S. M., Rose, R., Timberlake, M., & Swaine, J. G. (2012). Health care of Latino children with autism and other developmental disabilities: Quality of provider interaction mediates utilization. American Journal on Intellectual and Developmental Disabilities, 117(4), 304e315. https://doi.org/10.1352/1944-7558-117.4.304. Parsons, S., & Kasari, C. (2013). Schools at the centre of educational research in autism: Possibilities, practices and promises. Autism, 17(3), 251e253. https://doi.org/10.1177/ 1362361313483624. Pierce, N. P., O’Reilly, M. F., Sorrells, A. M., Fragale, C. L., White, P. J., Aguilar, J. M., & Cole, H. A. (2014). Ethnicity reporting practices for empirical research in three autismrelated journals. Journal of Autism and Developmental Disorders, 44(7), 1507e1519. https:// doi.org/10.1007/s10803-014-2041-x. Raghavan, C., Weisner, T. S., & Patel, D. (1999). The adaptive project of parenting: South Asian families with children with developmental delays. Education and Training in Mental Retardation and Developmental Disabilities, 34(3), 281e292. Retrieved from http://www. jstor.org/stable/23879780. Ratto, A. B., Anthony, B. J., Kenworthy, L., Armour, A. C., Dudley, K., & Anthony, L. G. (2016). Are non-intellectually disabled black youth with ASD less impaired on parent report than their white peers? Journal of Autism and Developmental Disorders, 46(3), 773e781. https://doi.org/10.1007/s10803-015-2614-3. Ratto, A. B., Anthony, B. J., Pugliese, C., Mendez, R., Safer-Lichtenstein, J., Dudley, K. M., … Anthony, L. G. (2017). Lessons learned: Engaging culturally diverse families in neurodevelopmental disorders intervention research. Autism, 21(5), 622e 634. https://doi.org/10.1177/1362361316650394. Ratto, A. B., Reznick, J. S., & Turner-Brown, L. (2016). Cultural effects on the diagnosis of autism spectrum disorder among Latinos. Focus on Autism and Other Developmental Disabilities, 31(4), 275e283. https://doi.org/10.1177/1088357615587501. Ravindran, N., & Myers, B. J. (2012). Cultural influences on perceptions of health, illness, and disability: A review and focus on autism. Journal of Child and Family Studies, 21(2), 311e319. https://doi.org/10.1007/s10826-011-9477-9.

A Review of Diagnosis and Service Disparities Among Children

177

Reichow, B., Barton, E. E., Boyd, B. A., & Hume, K. (2014). Early intensive behavioral intervention (EIBI) for young children with autism spectrum disorders (ASD): A systematic review. Campbell Systematic Reviews, 9. https://doi.org/10.4073/csr.2014.9. Rigles, B. (2017). The relationship between adverse childhood events, resiliency and health among children with autism. Journal of Autism and Developmental Disorders, 47(1), 187e202. https://doi.org/10.1007/s10803-016-2905-3. Rogers, S. J., Vismara, L., Wagner, A. L., McCormick, C., Young, G., & Ozonoff, S. (2014). Autism treatment in the first year of life: A pilot study of infant Start, a parent-implemented intervention for symptomatic infants. Journal of Autism and Developmental Disorders, 44(12), 2981e2995. https://doi.org/10.1007/s10803-014-2202-y. Salkas, K., Maga~ na, S. M., Marques, I., & Mirza, M. (2016). Spirituality in Latino families of children with autism spectrum disorder. Journal of Family Social Work, 19(1), 38e55. https://doi.org/10.1080/10522158.2015.1114060. Sansosti, F. J., Lavik, K. B., & Sansosti, J. M. (2012). Family experiences through the autism diagnostic process. Focus on Autism and Other Developmental Disabilities, 27(2), 81e92. https://doi.org/10.1177/1088357612446860. Schieve, L. a., Boulet, S. L., Blumberg, S. J., Kogan, M. D., Yeargin-Allsopp, M., Boyle, C. A., … Rice, C. (2012). Association between parental nativity and autism spectrum disorder among US-born non-Hispanic white and Hispanic children, 2007 National Survey of Children’s Health. Disability and Health Journal, 5(1), 18e25. https:// doi.org/10.1016/j.dhjo.2011.09.001. Sell, N. K., Giarelli, E., Blum, N., Hanlon, A. L., & Levy, S. E. (2012). A comparison of autism spectrum disorder DSM-IV criteria and associated features among African American and white children in Philadelphia County. Disability and Health Journal, 5(1), 9e17. https://doi.org/10.1016/j.dhjo.2011.08.002. Severini, K. E., Ledford, J. R., & Robertson, R. E. (2018). Systematic review of problem behavior interventions: Outcomes, demographics, and settings. Journal of Autism and Developmental Disorders, 0(0), 0. https://doi.org/10.1007/s10803-018-3591-0. Shattuck, P. T., Durkin, M., Maenner, M. J., Newschaffer, C. J., Mandell, D. S., Wiggins, L. D., … Cuniff, C. (2009). The timing and identification among children with an autism spectrum disorder: Findings from a population-based surveillance study. Journal of the American Academy of Child & Adolescent Psychiatry, 48(5), 474e483. Shattuck, P. T., Grosse, S., Parish, S., & Bier, D. (2009). Utilization of a Medicaid-funded intervention for children with autism. Psychiatric Services, 60(4), 549e552. https:// doi.org/10.1176/appi.ps.60.4.549. Shavers, V. L. (2007). Measurement of socioeconomic status in health disparities research. Journal of the National Medical Association, 99(9), 1013e1023. Retrieved from http:// www.ncbi.nlm.nih.gov/pubmed/17913111. Siller, M., Reyes, N., Hotez, E., Hutman, T., & Sigman, M. (2014). Longitudinal change in the use of services in autism spectrum disorder: Understanding the role of child characteristics, family demographics, and parent cognitions. Autism, 18(4), 433e446. https:// doi.org/10.1177/1362361313476766. Skiba, R. J., Horner, R. H., Chung, C.-G., Rausch, M. K., May, S. L., & Tobin, T. (2011). Race is not neutral: A national investigation of African American and latino disproportionality in school discipline. School Psychology Review, 40(1), 85e107. Smedley, B. D., Stith, A. Y., & Nelson, A. R. (Eds.). (2003). Unequal treatment: Confronting racial and ethnic disparities in health care. Washington, DC: The National Academies Press. Smith, T. (2011). Applied behavior analysis and early intensive behavioral intervention. In G. Amaral, G. Dawson, & G. H. Geschwind (Eds.), Autism spectrum disorders (pp. 1036e1055). New York: Oxford University Press.

178

Amber M. Angell et al.

Solomon, O., Angell, A. M., Yin, L., & Lawlor, M. C. (2015). “You can turn off the light if you like”: Pediatric health care visits for children with autism spectrum disorder as an interactional achievement. Medical Anthropology Quarterly, 29(4), 531e555. https:// doi.org/10.1111/maq.12237. St Amant, H. G., Schrager, S. M., Pe~ na-Ricardo, C., Williams, M. E., & Vanderbilt, D. L. (2018). Language barriers impact access to services for children with autism specrum disorders. Journal of Autism and Developmental Disorders, 48(2), 333e340. https:// doi.org/10.1007/s10803-017-3330-y. Stahmer, A. C., Suhrheinrich, J., & Mandell, D. S. (2016). The importance of characterizing intervention for individuals with autism. Autism, 20(4), 386e387. https://doi.org/ 10.1177/1362361316637503. Swanson, A. R., Warren, Z. E., Stone, W. L., Vehorn, A. C., Dohrmann, E., & Humberd, Q. (2013). The diagnosis of autism in community pediatric settings: Does advanced training facilitate practice change? Autism: The International Journal of Research and Practice, 18(5), 555e561. https://doi.org/10.1177/1362361313481507. Tek, S., & Landa, R. J. (2012). Differences in autism symptoms between minority and nonminority toddlers. Journal of Autism and Developmental Disorders, 42(9), 1967e1973. https://doi.org/10.1007/s10803-012-1445-8. Thomas, P., Zahorodny, W., Peng, B., Kim, S., Jani, N., Halperin, W., & Brimacombe, M. (2012). The association of autism diagnosis with socioeconomic status. Autism, 16(2), 201e213. https://doi.org/10.1177/1362361311413397. Tincani, M., Travers, J., & Boutot, A. (2009). Race, culture, and autism spectrum disorder: Understanding the role of diversity in successful educational interventions. Research and Practice for Persons with Severe Disabilities, 34(3), 81e90. https://doi.org/10.2511/ rpsd.34.3-4.81. Travers, J. C., Tincani, M., & Krezmien, M. P. (2011). A multiyear national profile of racial disparity in autism identification. The Journal of Special Education, 47(1), 41e49. https:// doi.org/10.1177/0022466911416247. Tregnago, M. K., & Cheak-Zamora, N. C. (2013). Systematic review of disparities in health care for individuals with autism spectrum disorders in the United States. Research in Autism Spectrum Disorders, 6(3), 1023e1031. https://doi.org/10.1016/ j.rasd.2012.01.005. Twoy, R., Connolly, P. M., & Novak, J. M. (2007). Coping strategies used by parents of children with autism. Journal of the American Academy of Nurse Practitioners, 19(5), 251e260. https://doi.org/10.1111/j.1745-7599.2007.00222.x. U. S. Census Bureau. (2015a). Facts for features: American Indian and Alaskan native heritage month. Retrieved from https://www.census.gov/newsroom/facts-for-features/2015/ cb15-ff22.html. U. S. Census Bureau. (2015b). Facts for features: American Indian and Alaskan native heritage month. U. S. Census Bureau. (2017). Race & ethnicity. Retrieved from https://www.census.gov/ mso/www/training/pdf/race-ethnicity-onepager.pdf. Valicenti-McDermott, M., Hottinger, K., Seijo, R., & Shulman, L. (2012). Age at diagnosis of autism spectrum disorders. The Journal of Pediatrics, 161(3), 554e556. https://doi.org/ 10.1016/j.jpeds.2012.05.012. Vanegas, S. B., Maga~ na, S. M., Morales, M., & McNamara, E. (2016). Clinical validity of the ADI-R in a US-based Latino population. Journal of Autism and Developmental Disorders, 46(5), 1623e1635. https://doi.org/10.1007/s10803-015-2690-4. Vismara, L. A., & Rogers, S. J. (2010). Behavioral treatments in autism spectrum disorder: What do we know? Annual Review of Clinical Psychology, 6(1), 447e468. https:// doi.org/10.1146/annurev.clinpsy.121208.131151.

A Review of Diagnosis and Service Disparities Among Children

179

Warren, Z., McPheeters, M. L., Sathe, N., Foss-Feig, J. H., Glasser, A., & VeenstraVanderweele, J. (2011). A systematic review of early intensive intervention for autism spectrum disorders. Pediatrics, 127(5), e1303ee1311. https://doi.org/10.1542/ peds.2011-0426. Weitlauf, A. S., McPheeters, M. L., Peters, B., Sathe, N., Travis, R., Aiello, R., … Warren, Z. (2014). Therapies for children with autism spectrum disorder: Behavioral interventions update. Rockville, MD: Prepared by the Vanderbilt Evidence-based Practice Center under Contract No. 290-2012-00009-I. Retrieved from www. effectivehealthcare.ahrq.gov/reports/final.cfm. West, E. A., Travers, J. C., Kemper, T. D., Liberty, L. M., Cote, D. L., McCollow, M. M., & Stansberry Brusnahan, L. L. (2016). Racial and ethnic diversity of participants in research supporting evidence-based practices for learners with autism spectrum disorder. The Journal of Special Education, 50(3), 151e163. https://doi.org/10.1177/0022466916632495. Wilder, L. K., Dyches, T. T., Obiakor, F. E., & Algozzine, B. (2004). Multicultural perspectives on teaching students with autism. Focus on Autism and Other Developmental Disabilities, 19(2), 105e113. Retrieved from http://www.cec.sped.org/AM/ TemplateRedirect.cfm?template¼/CM/ContentDisplay.cfm&Section¼Autism_ Asperger_s_Syndrome&ContentID¼4185. Williams, M. E., Atkins, M., & Soles, T. (2009). Assessment of autism in community settings: Discrepancies in classification. Journal of Autism and Developmental Disorders, 39(4), 660e 669. https://doi.org/10.1007/s10803-008-0668-1. Windham, G. C., Smith, K. S., Rosen, N., Anderson, M. C., Grether, J. K., Coolman, R. B., & Harris, S. (2014). Autism and developmental screening in a public, primary care setting primarily serving Hispanics: Challenges and results. Journal of Autism and Developmental Disorders, 44(7), 1621e1632. https://doi.org/10.1007/s10803-014-2032-y. Woolf, S. H., & Braveman, P. (2011). Where health disparities begin: The role of social and economic determinants - and why current policies may make matters worse. Health Affairs, 30(10), 1852e1859. https://doi.org/10.1377/hlthaff.2011.0685. Yeh, M. a Y., Hough, R. L., Lau, A., & Garland, a N. N. (2004). Parental beliefs about the causes of child Problems : Exploring racial/ethnic patterns. Journal of the American Academy of Child and Adolescent Psychiatry, (May), 605e612. https://doi.org/10.1097/ 01.chi.0000117310.94712.72. Zablotsky, B., Black, L. I., Maenner, M. J., Schieve, L. A., & Blumberg, S. J. (2015). Estimated prevalence of autism and other developmental disabilities following questionnaire changes in the 2014 National Health Interview Survey. National Health Statistics Report, 87. Zamora, I., Williams, M. E., Higareda, M., Wheeler, B. Y., & Levitt, P. (2016). Brief report: Recruitment and retention of minority children for autism research. Journal of Autism and Developmental Disorders, 46(2), 698e703. https://doi.org/10.1007/s10803-015-2603-6. Zuckerman, K. E., Lindly, O. J., Reyes, N. M., Chavez, A. E., & Cobian, M. (2018). Parent perceptions of community autism spectrum disorder stigma: Measure validation and associations in a multi-site sample. Journal of Autism and Developmental Disorders, 0(0), 0. https://doi.org/10.1007/s10803-018-3586-x. Zuckerman, K. E., Lindly, O. J., Reyes, N. M., Chavez, A. E., Macias, K., Smith, K. N., & Reynolds, A. (2017). Disparities in diagnosis and treatment of autism in Latino and nonLatino white families. Pediatrics, 139(5). https://doi.org/10.1542/peds.2016-3010. e20163010. Zuckerman, K. E., Lindly, O. J., Sinche, B. K., & Nicolaidis, C. (2015). Parent health beliefs, social determinants of health, and child health services utilization among U.S. school-age children with autism. Journal of Developmental and Behavioral Pediatrics, 36(3), 146e157. https://doi.org/10.1097/DBP.0000000000000136.

180

Amber M. Angell et al.

Zuckerman, K. E., Mattox, K., Donelan, K., Batbayar, O., Baghaee, A., & Bethell, C. (2013). Pediatrician identification of Latino children at risk for autism spectrum disorder. Pediatrics, 132(3), 445e453. https://doi.org/10.1542/peds.2013-0383. Zuckerman, K. E., Sinche, B., Cobian, M., Cervantes, M., Mejia, A., Becker, T., & Nicolaidis, C. (2014). Conceptualization of autism in the Latino community and its relationship with early diagnosis. Journal of Developmental and Behavioral Pediatrics, 0(0), 1e11. Zuckerman, K. E., Sinche, B., Mejia, A., Cobian, M., Becker, T., & Nicolaidis, C. (2014). Latino parents’ perspectives on barriers to autism diagnosis. Academic Pediatrics, 14(3), 301e308. https://doi.org/10.1016/j.acap.2013.12.004. Zwaigenbaum, L., Bauman, M. L., Choueiri, R., Kasari, C., Carter, A., Granpeesheh, D., … Natowicz, M. R. (2015). Early intervention for children with autism spectrum disorder under 3 years of age: Recommendations for practice and research. Pediatrics, 136(Suppl. 1), S60eS81. https://doi.org/10.1542/peds.20143667E. Zwaigenbaum, L., & Penner, M. (2018). Autism spectrum disorder: Advances in diagnosis and evaluation. Bmj, 361, k1674. https://doi.org/10.1136/bmj.k1674.