Importance The global prevalence of autism spectrum disorder (ASD) has been reported to be between 1% and 2% of the population, with little research in Black, Asian, and other racial/ethnic minority groups. Accurate estimates of ASD prevalence are vital to planning diagnostic, educational, health, and social care services and may detect possible access barriers to diagnostic pathways and services and inequalities based on social determinants of health. Objective To evaluate whether socioeconomic disadvantage is associated with ASD prevalence and the likelihood of accessing ASD services in racial/ethnic minority and disadvantaged groups in England. Design, Setting, and Participants This case-control prevalence cohort study used the Spring School Census 2017 from the Pupil Level Annual Schools Census of the National Pupil Database, which is a total population sample that includes all English children, adolescents, and young adults aged 2 to 21 years in state-funded education. Data were collected on January 17, 2017, and analyzed from August 2, 2018, to January 28, 2020. Exposures Age and sex were treated as a priori confounders while assessing correlates of ASD status according to (1) race/ethnicity, (2) social disadvantage, (3) first language spoken, (4) Education, Health and Care Plan or ASD Special Educational Needs and Disability support status, and (5) mediation analysis to assess how social disadvantage and language might affect ASD status. Main Outcomes and Measures Sex- and age-standardized ASD prevalence by race/ethnicity and 326 English local authority districts in pupils aged 5 to 19 years. Results The final population sample consisted of 7 047 238 pupils (50.99% male; mean [SD] age, 10.18 [3.47] years) and included 119 821 pupils with ASD, of whom 21 660 also had learning difficulties (18.08%). The standardized prevalence of ASD was 1.76% (95% CI, 1.75%-1.77%), with male pupils showing a prevalence of 2.81% (95% CI, 2.79%-2.83%) and female pupils a prevalence of 0.65% (95% CI, 0.64%-0.66%), for a male-to-female ratio (MFR) of 4.32:1. Standardized prevalence was highest in Black pupils (2.11% [95% CI, 2.06%-2.16%]; MFR, 4.68:1) and lowest in Roma/Irish Travelers (0.85% [95% CI, 0.67%-1.03%]; MFR, 2.84:1). Pupils with ASD were more likely to face social disadvantage (adjusted prevalence ratio, 1.61; 95% CI, 1.59-1.63) and to speak English as an additional language (adjusted prevalence ratio, 0.64; 95% CI, 0.63-0.65). The effect of race/ethnicity on ASD status was mediated mostly through social disadvantage, with Black pupils having the largest effect (standardized mediation coefficient, 0.018;P Conclusions and Relevance These findings suggest that significant differences in ASD prevalence exist across racial/ethnic groups and geographic areas and local authority districts, indicating possible differential phenotypic prevalence or differences in detection or referral for racial/ethnic minority groups.

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Association of Race/Ethnicity and Social Disadvantage With Autism Prevalence in 7 Million School Children in England

A history of systemic racism has led to too few Black Americans working in the sciences. Autism research is not immune to this problem, and the dearth of Black scientists and clinicians likely has contributed to health disparities among Black autistic people (Jackson & Nadine Gracia, 2014). People from underrepresented minority groups who are trained in science and medicine are much more likely to study and care for disenfranchised minorities than White scientists and practitioners (Cantor et al., 1996; Komaromy et al., 1996). By recruiting and supporting Black scientists and clinicians, we can address the underrepresentation of Black autistic people in research studies, helping to reduce health disparities and benefitting autism research as a whole. On average, Black Americans receive worse healthcare and have poorer health outcomes than White Americans. These disparities are present regardless of education or income (Williams et al., 2016), suggesting that cultural barriers and provider biases may contribute (American College of Physicians, 2010). A history of ethical violations towards Black research participants (e.g. Tuskegee syphilis trials) has fostered considerable distrust towards clinical research within the Black community (Boulware et al., 2003; Hooper et al., 2019), contributing to low engagement. These disparities are evident in autism clinical practice and research. Black children are less likely to be diagnosed with autism spectrum disorder (ASD) than White children (Mandell et al., 2009), despite Black and White parents reporting first concerns when their children are of similar ages (Jang et al., 2014), and Black autistic children are often misdiagnosed with other psychiatric disorders (Mandell et al., 2007). Among those diagnosed with autism, clinical presentation is more severe, on average, than that of White children, suggesting that Black children with less impairing symptoms are missed altogether (Jarquin et al., 2011). These diagnostic disparities may reflect providers’ racial biases; many Black caregivers of autistic children state that their provider has expressed doubts about the parents’ knowledge of autism or made racist assumptions about their family structure or income (Dababnah et al., 2018). These assumptions may cause providers to dismiss Black caregivers’ concerns about ASD (Magaña et al., 2015; Pearson & Meadan, 2018). Black caregivers also report distrust of research (Shaia et al., 2020), creating an additional barrier for Black autistic people, who have been historically underrepresented in autism research. This underrepresentation continues today. A meta-analysis of intervention studies found that most failed to report the racial and ethnic demographics of participants; the few studies that included this information reported overwhelmingly White participants (West et al., 2016). These disparities highlight a broader culture of exclusion and ignoring people of colour in autism research. Perhaps unsurprisingly, this exclusion extends to Black autism researchers. Although the International Society for Autism Research (INSAR) has made concerted efforts to improve diversity, the society has provided no metrics of its success and the annual conference has had no Black keynote speakers in the 18 years for which records are available online. While diversity may have increased among students and early career researchers, underrepresentation persists at all career levels. Although it is impossible to ascertain the race with which awardees identify without asking them, our search of federally and privately funded autism-related fellowship applications at the doctoral, postdoctoral and junior faculty levels revealed very few Black trainees. While select grants and fellowships in autism research prioritize underrepresented trainees, these apply exclusively to research on disparities. This restricts Black students’ opportunities in other research areas and promotes diversity in a very narrow range of autism research. Organizations such as INSAR further limit the platform of Black researchers by merging cultural diversity among researchers with the connected, but distinct issue of cultural diversity among the people they study. While many related research professional organizations (Society for Research in Child Development, American Psychological Association, and Society for Neuroscience) include caucuses to support the needs of Black researchers, no such caucus, committee, or organization currently exists in autism research. INSAR has recently published a statement (INSAR Board of Directors and Cultural Diversity Committee, 2020) acknowledging the lack of diversity in autism research and promising to address these issues, but this alone is not sufficient for dismantling the toxic effects of systemic racism in our field. Instead, individuals, organizations, and institutions must work together, taking sustained action to address these inequalities and promote Black autism researchers. To address racial disparities in autism research, we must think globally, act locally 948313 AUT0010.1177/1362361320948313AutismEditorial editorial2020

https://journals.sagepub.com/doi/pdf/10.1177/1362361320948313

To address racial disparities in autism research, we must think globally, act locally:

BACKGROUND Autism presents with similar prevalence and core impairments in diverse populations. We conducted a scoping review of reviews to determine key barriers and innovative strategies which can contribute to attaining universal health coverage (UHC), from early detection to effective interventions for autism in low- and middle-income countries (LAMIC). METHODS A systematic literature search of review articles was conducted. Reviews relevant to the study research question were included if they incorporated papers from LAMIC and focused on children (<eight years old) with autism or their caregivers. The database search was supplemented with bibliographic search of included articles and key informant suggestions. Data were extracted and mapped onto a Theory of Change model toward achieving UHC for autism in LAMIC. RESULTS We identified 31 articles which reviewed data from over fifty countries across Africa, Latin America, Middle East, and Asia and addressed barriers across one or more of four inter-related domains: (a) the social context and family experience for a child with autism; (b) barriers to detection and diagnosis; (c) access to appropriate evidence-based intervention; and (d) social policy and legislation. Key barriers identified included: lack of appropriate tools for detection and diagnosis; low awareness and experienced stigma impacting demand for autism care; and the prevalence of specialist models for diagnosis and treatment which are not scalable in LAMIC. CONCLUSIONS We present a Theory of Change model which describe the strategies and resources needed to realize UHC for children with autism in LAMIC. We highlight the importance of harnessing existing evidence to best effect, using task sharing and adapted intervention strategies, community participation, and technology innovation. Scaling up these innovations will require open access to appropriate detection and intervention tools, systematic approaches to building and sustaining skills in frontline providers to support detection and deliver interventions embedded within a stepped care architecture, and community awareness of child development milestones.

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Annual Research Review: Achieving universal health coverage for young children with autism spectrum disorder in low- and middle-income countries: a review of reviews.

There are marked racial and ethnic disparities in diagnosis and services for individuals on the autism spectrum, yet race and ethnicity are underreported and underexamined in autism research. The current study examines the reporting of race and ethnicity and the inclusion of participants across racial and ethnic groups in studies included in a large-scale systematic review of autism intervention research (1990–2017). Trained research assistants reviewed 1013 articles and extracted data on the reporting of race and ethnicity data and the inclusion of participants from different racial and ethnic categories from each article. Only 25% of the articles reported any data on race and ethnicity and reporting over time has slowly increased across the 28 years of the review. Descriptive statistics suggest that race and ethnicity reporting varied by study design, intervention, and outcomes. In studies with reported data, White participants had the highest rate of participation (64.8%), with a large gap between the next highest rates of participation, which were among Hispanic/Latino (9.4%), Black (7.7%), and Asian (6.4%) participants. The lack of reporting and the limited inclusion of participants across minoritized racial and ethnic groups are concerning and suggest a need to examine practices in autism research from planning to dissemination. Lay Abstract Researchers who study autism-related interventions do a poor job reporting data related to the race and ethnicity of autistic individuals who participate in their studies, and of those who do report these data, the participants are overwhelmingly White. This is problematic for many reasons, as we know little about how interventions are meeting the needs of culturally and linguistically diverse populations, and we assume that interventions are effective for all when they have been developed and validated primarily with and for White children. This study examined the reporting patterns of autism intervention researchers whose work was included in a large-scale systematic review of the intervention literature published between 1990 and 2017. We found that only 25% of studies (out of 1,013 included in the review) included data related to the race and ethnicity of their participants, with minimal change in reporting patterns across the years. In studies with reported data, White participants had the highest rate of participation, with a large gap between the next highest rates of participation among Hispanic/Latino, Black, and Asian participants. Other race and ethnicity groups had very low representation. This study includes additional analyses which examine how the reporting patterns and the inclusion of racially and ethnically diverse participants varies across study types, interventions, and outcome areas. Reporting this data is merely a starting point to begin to address the many disparities in autism-related healthcare, education, and research practices, and this article includes broader implications and next steps to ensure the field becomes more equitable and inclusive.

https://journals.sagepub.com/doi/pdf/10.1177/13623613211072593

Patterns in reporting and participant inclusion related to race and ethnicity in autism intervention literature: Data from a large-scale systematic review of evidence-based practices

Evidence-based practices (EBPs) in early intervention for autism spectrum disorder (ASD) have the potential to improve children’s developmental trajectories and address family needs. However, the successful use of EBPs in community early intervention settings requires careful attention to the context in which services are delivered. Implementation science, and specifically the Exploration, Preparation, Implementation, and Sustainment (EPIS) Model, provides a framework to examine context across multiple levels and identify barriers and facilitators to community EBP use. This article identifies several considerations most relevant for early intervention in ASD at the outer and inner context levels, as well as bridging and innovation factors. Outer context considerations include the policies and funding streams surrounding service delivery, the role of advocacy in shaping the service landscape, the availability of appropriate specialists to provide services, and family cultural characteristics. Inner context factors include the individual characteristics of both the children receiving the service as well as the provider delivering the service, in addition to the leadership and organizational climate surrounding the use of a particular EBP. We also discuss considerations of the specific innovation (in this case, EBP early interventions) to be deployed, as well as bridging factors.

/pdf/considerations-in-implementing-evidence-based-early-autism-1e06qiw1zd.pdf

Considerations in implementing evidence-based early autism spectrum disorder interventions in community settings.

Black children with autism spectrum disorder (ASD) are diagnosed later than their White peers, are more likely to be misdiagnosed, and are less likely to receive early intervention services or a developmental evaluation by three years old. Using a grounded theory approach, we solicited the perspectives of parents and other primary caregivers of Black children with ASD on barriers and facilitators to ASD screening and referrals in primary care. A socioeconomically diverse sample of 22 female caregivers participated. Four themes emerged. First, while some caregivers noted their child's primary healthcare providers facilitated a timely ASD diagnosis, other participants reported these providers ignored early concerns about child developmental delays. Second, many participants felt racial bias negatively impacted caregiver-primary healthcare provider interactions. Third, legal/custodial issues slowed caregivers' abilities to follow up on referrals from their primary healthcare providers. Finally, caregivers described denial, shame, and stigma relating to ASD in the Black community as possible factors for delayed follow up to referrals. Differences based on socioeconomic status are discussed. Efforts to improve family-centered, culturally relevant care for all Black caregivers raising children with or at-risk for ASD are needed, particularly for those families experiencing the multiple effects of poverty.

“We Had to Keep Pushing”: Caregivers' Perspectives on Autism Screening and Referral Practices of Black Children in Primary Care

Black and African-American families are underrepresented in research on autism spectrum disorder (ASD) and few studies have explored how to increase their involvement. To address this gap in the literature, this study explored the perspectives of 22 Black families raising children with ASD in order to identify facilitators and barriers to research participation; as well as suggestions to increase their involvement in ASD studies. Facilitators to research involvement included a desire to contribute to ASD research inclusive of Black families; to seek information and support for child and/or caregiver; and, to engage with culturally responsive research team members. Barriers to research involvement included stigma; denial, shame, and/or embarrassment; distrust of the research process; lack of time/interest; and research material inaccessibility or literacy issues.

Brief Report: Participation of Black and African-American Families in Autism Research

Little is known about services for individuals with autism spectrum disorder (ASD) in India. We systematically reviewed the literature to identify studies of ASD interventions in India. Among the 13 articles meeting review criteria, nearly all described efforts to culturally adapt interventions and/or outcome measures for Indian participants. Generally small and urban study samples limited generalizability of findings. Few studies targeted young children, and none focused on older adolescents and/or adults. All studies described improvements in target child and/or caregiver outcomes. However, the majority used qualitative, single-subject, or one-group designs, and several did not adequately describe their research designs or analytic methods. More research is needed to test and scale up culturally relevant ASD interventions for Indian populations.

Autism Interventions in India: a Systematic Review

Children exposed to intimate partner violence (IPV) can experience negative social, emotional, behavioral, and academic outcomes. A growing body of research has examined the relationship between intellectual and developmental disabilities (IDD) and IPV exposure. We systematically reviewed the literature for research exploring this relationship and found a limited number of studies meeting inclusion criteria ( N = 11). Over half (64%) identified a significant relationship between IPV and IDD, although the cross-sectional methodologies of the majority of studies (82%) prevented the ability to ascertain directionality. Further, the studies defined and measured IPV and IDD in various ways. Some studies were limited by poor external validity and small sample sizes. More research is needed to understand the intersection between IPV exposure and IDD.

The Relationship Between Children's Exposure to Intimate Partner Violence and Intellectual and Developmental Disabilities: A Systematic Review of the Literature.

Karen Campion

Papers

“We Had to Keep Pushing”: Caregivers' Perspectives on Autism Screening and Referral Practices of Black Children in Primary Care

Brief Report: Participation of Black and African-American Families in Autism Research

Autism Interventions in India: a Systematic Review

The Relationship Between Children's Exposure to Intimate Partner Violence and Intellectual and Developmental Disabilities: A Systematic Review of the Literature.