A Systematic Review of Recruiting and Retaining Sociodemographically Diverse Families in Neurodevelopmental Research Studies

Mire, Sarah S.; Truong, Dieu M.; Rosenbrock, Georgina J.; Ayala-Brittain, Mycah L; Boykin, Jelisa D; Stewart, Christian M.; Daniels, Fre'Dasia; Duran, Brenda; Gardner, Scarlett; Barth, Alexandra M.; Richardson, Georgette; McKee, Shannon L.

doi:10.1007/s10803-023-05968-x

Cited by 5 publications

(1 citation statement)

References 45 publications

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“…Apart from recruitment challenges, attrition of Black participants can diminish statistical power, hindering the ability to draw definitive conclusions about group differences and treatment effects (Kazdin, 1990). The limited representation of Black participants in intervention studies (Kasambira Fannin, 2017; Malone et al, 2022; Steinbrenner et al, 2022) may result in proliferation of service delivery methods that are applied to all autistic people, despite lack of culturally representative test samples (Mire et al, 2023), and regardless of questionable treatment effects (Crosland et al, 2013; Kazdin, 1990; Nielsen et al, 2017; Pierce et al, 2014). Because using either ineffective or unvalidated interventions for diverse populations can result in significant financial burdens and risks for schools and service providers (Scheibel et al, 2022; Vanegas et al, 2022), we thereby emphasize the need for heterogeneous samples to develop more broadly applicable evidence‐based interventions (Zamora et al, 2016).…”

Section: Introductionmentioning

confidence: 99%

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

Fannin,

Williams,

Fuller

et al. 2024

Autism Research

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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.

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