Unpacking the prevalence: A warning against overstating the recently narrowed gap for Black autistic youth.

Recent findings from the Centers for Disease Control and Prevention's (CDC) Autism and Developmental Disabilities Monitoring (ADDM) Network's 2020 prevalence report indicate that disparities in autism diagnoses between Black and White youth have narrowed, reflecting improved screening, awareness, and access to services (Maenner et al., 2023. Morbidity and Mortality Weekly Report. Surveillance Summaries (Washington, D.C.: 2002), 72, 1-14.). Claims of reducing disparities beyond prevalence rates, however, are not fully supported, as indicated by the reality that Black youth whose screenings indicate autistic traits are still not being referred for full evaluation or early intervention services at the same rate as their White peers (Major et al., 2020. Autism, 24, 1629-1638; Smith et al., 2020. Pediatrics, 145, S35-S46.). Black 8-year-olds identified as autistic still experience disparate educational placements (Waitoller et al., 2010. The Journal of Special Education. 44, 29-49.) where services may not be autism-specific or have Individual Education Plan goals only focused on "behavior problems" (Severini et al., 2018. Journal of Autism and Developmental Disorders, 48, 3261-3272.), are served in the most restrictive environments (Skiba et al., 2006. Exceptional Children, 72, 411-424.) and lack consistent augmentative and alternative communication support (Pope et al., 2022. American Journal of Speech-Language Pathology, 31, 2159-2174.). Additionally, ADMM researchers report consistent disparities in the identification of co-occurring intellectual disability where Black autistic children have significantly more co-occurrences than White autistic children. The purpose of this commentary is to first examine the assertion that the narrowed gap indicates, "…improved…access to services among historically underserved groups," (p. 9) (Maenner et al., 2023. Morbidity and Mortality Weekly Report. Surveillance Summaries (Washington, D.C.: 2002), 72, 1-14.). We will then recommend strategies to address the ongoing disparities.

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.

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.

The Scholarly Neglect of Black Autistic Adults in Autism Research.

Black autistic individuals, regardless of age, have not been centered in autism research. Instead, they often exist on the margins-on the periphery of autism research. In fact, Black autistic adults are largely absent from the literature. Most participants in autism research are majority-white autistic individuals and families. In this conceptual article, we use intersectionality and Dis/ability Studies and Critical Race Theory theories to contextualize Black autistic adults' experiences. Second, we argue that systemic disparities and methodological concerns are two contributors to the scholarly neglect of Black autistic adults in autism research. Third, we provide guidelines to support researchers in moving from neglect to inclusive research with Black autistic adults.

Why is this topic important?: The experiences of Black autistic adults are not well represented in research. The lack of cultural responsiveness in autism research ignores the nuanced experiences of Black autistic adults, which limits the ability to understand their experiences and effectively meet their needs. What is the purpose of this article?: The purpose of this article is to highlight the void in autism research concerning Black autistic adults. This article is a call to action for research that is inclusive of Black autistic adults. Specifically, we (1) use intersectionality and Dis/ability Studies and Critical Race Theory theories to contextualize Black autistic adults' experiences, (2) describe the systemic disparities (e.g., health care) that contribute to the scholarly neglect of Black autistic adults, and (3) provide guidelines to support researchers in moving from neglect to inclusive research with Black autistic adults. What personal or professional perspectives do the authors bring to this topic?: The first author identifies as a white, non-binary, doctoral student in Applied Developmental Science and Special Education. The second author identifies as a Black, cisgender female, Assistant Professor of Special Education. The third author identifies as a white, non-binary, autistic autism researcher. The fourth author identifies as a Black, cisgender male, doctoral student in Educational Equity. The fifth author identifies as a black, cisgender female, doctoral student in Educational Equity. The sixth author identifies as a Black, cisgender female, dual-licensed special education teacher, and doctoral student in Educational Equity. Although none of the authors embody the lived experience of being both Black and autistic, our research team is committed to supporting and advocating for Black autistic individuals through our ongoing professional development and dedication to strength-based, and identity-centered research. What is already known about this topic?: Although we know about disparities in Black autistic children, little research has focused on the experiences of Black autistic adults. Most of what we know about autistic adults is based on the experiences of white participants. What do the authors recommend?: First, we recommend that researchers work to understand how their own perspectives, values, and experiences shape their research (e.g., cultural reciprocity). Second, we recommend that researchers intentionally include the perspectives and experiences of Black autistic adults. This can include collaborating on research with Black autistic scholars and highlighting autistic and Black autistic led research. Finally, we advocate for systemic changes in institutions of higher education (e.g., reduce barriers to admission) and in communities (e.g., culturally responsive supports) to better address the inequities that impact the representation of Black autistic adults in autism research. How will these recommendations help autistic adults now or in the future?: These recommendations will prepare researchers with strategies to effectively build partnerships with Black autistic adults in ways that honor their knowledge and contributions to the field. As a result, Black autistic adults will have more representation in autism research, both as participants and as leading scholars in the field. We hope that more inclusive representation of Black autistic adults will lead to more culturally responsive approaches in adult autism research.

FACES: An Advocacy Intervention for African American Parents of Children With Autism.

Children with autism and their families often face challenges accessing early intervention and related services. African American children face additional challenges due to disparities in diagnoses and access to services. These disparities present a great need for parent advocacy to combat culturally insensitive service delivery and strained parent-professional partnerships. In this sequential mixed methods study, we piloted a 6-week parent-training intervention (FACES) among African American parents of children with autism and evaluated participants' empowerment, advocacy, and partnerships pre- and postintervention. Results indicated that parents' advocacy, sense of empowerment, and community support were strengthened, following the FACES program. Participants also described the FACES intervention as socially valid. Implications for research and practice are discussed.

Parent and Professional Experiences Supporting African-American Children with Autism.

While the identification of autism spectrum disorder (ASD) has stabilized at 1 in 59 children in the USA, and children can now be diagnosed reliably with ASD at 2 years old, African-American children are less likely to be diagnosed with ASD. Once African-American children with ASD are identified, there is a latency between diagnosis and access to services when compared to European American children. In an effort to investigate these disparities, this qualitative study explored the experiences and perceptions of African-American parents of children with ASD. This study also explored the experiences and perceptions of professionals who support African-American children with ASD and their families. Findings indicate that (a) participants identified few facilitators to service access, and (b) both parents and healthcare providers perceived similar barriers and facilitators to early diagnoses and service access. Implications for parents, healthcare providers, and educators are discussed.

Meeting FACES: Preliminary Findings from a Community Workshop for Minority Parents of Children with Autism in Central North Carolina.

In North Carolina (NC), there are many resources designed to support the needs of children with autism and their families, and yet a troubling gap in underserved families' access to those services. To address this gap, the Meeting FACES workshop was designed to: (a) provide an opportunity for parents, educators, and service providers to build partnerships, (b) provide parents with opportunities to learn about available autism services in their communities, and (c) assess the needs of underrepresented families of children with autism in NC. Findings indicate that minority families of children with autism in central NC require more supports to access and navigate services. Additionally, participants were very satisfied with Meeting FACES and were interested in participating in future FACES programming.