Autism presentation in female and Black populations: Examining the roles of identity, theory, and systemic inequalities

Abstract

The prevalence of autism is rising, a dynamic attributed to numerous explanations (e.g. better diagnostic practices, decreased stigma). As this neurodevelopmental disability increases in visibility, disparities in its diagnostic rate grow. Female and Black populations in the United States have historically lower prevalence, are diagnosed later, are more likely to have co-occurring intellectual disability, and experience exclusion from research. Autistic Black girls are effectively invisible in the literature. To combat this exclusion, this narrative review discusses intersectionality theory and how it may be used to provide integrated models that are inclusive toward diverse gender, ability, and racial/ethnic backgrounds. Systemic inequalities, including prenatal care and misdiagnosis, disproportionately negatively impact the quality of care available to female and Black autistic populations. The authors recommend that research include autistic populations with co-occurring intellectual disability, include a diagnostic evaluation as part of protocols, and clinically, universal screening and improved provider competence and confidence in working with diverse autistic populations. Lay abstract Although the prevalence of autism has been rising in recent years, disparities in diagnosis still remain. Female and Black populations in the United States are diagnosed later, are more likely to have an intellectual disability, and are excluded from research as well as services designed for autistic individuals. Autistic Black girls are effectively invisible in the current scientific literature. Intersectional theory, which looks at a person as a whole, examines models that are inclusive toward diverse gender, ability, and racial/ethnic backgrounds. This theory may be a useful approach to clinical and research work with autism so that practitioners may be most effective for the whole population of autistic people. The authors recommend research focusing on inclusion of autistic populations with intellectual disability and research studies that include evaluations as part of the procedure. Clinically, the authors recommend a focus on screening all young children for autism and improving provider knowledge in working with diverse autistic populations.

A critical overview of how English health and social care publications represent autistic adults’ intimate lives

“…Equality and diversity discourses. Autistic people are a very diverse group, and Government policy and guidance should recognise the multiple and intersecting inequalities that they may face (Diemer et al, 2022). Many of the documents in our dataset were retrieved because they contained the term 'sexual orientation'.…”

“…This is best evidenced by the fact that multiple documents published over several years contain identical sentences or paragraphs referring to sexual orientation, lifted verbatim from an earlier document and pasted into the next [e.g., 7,8,11,12]. This repetition reveals the superficial and tokenistic ways in which policy-makers have considered sexual orientation in the Autism Strategy, at the expense of genuine, sustained engagement with the intersecting and complex inequalities that this heterogeneous group experience (Diemer et al, 2022). Though a detailed discussion is beyond the scope of this analysis, it is vital that future research and policy on supporting autistic adults' intimate lives recognises sexuality, sex, gender, disability, ethnicity, class, culture, religion, and age as important sites of difference for autistic people which may shape individuals' intimate lives, the challenges they experience, and the support they may need.…”

From Puzzle to Progress: How Engaging With Neurodiversity Can Improve Cognitive Science

“…However, we are united in combating ableism and in believing that cognitive science cannot be truly representative until it empowers and engages with neurodivergent populations and in emphasizing the intersectional nature of neurodiversity. Social and institutional barriers—such as higher rates of misdiagnosis/misidentification of neurodivergence—disproportionately impact disabled people, people of color, and women (Davis, Solomon, & Belcher, 2022; Diemer, Gerstein, & Regester, 2022; Jack, 2011; Malone et al., 2022; Zener, 2019). Neurodivergence also intersects with queerness and variant gender identity (Walker, 2021).…”

Time to level up: A systematic review of interventions aiming to reduce stigma toward autistic people

“…Furthermore, a review of interventions aimed at reducing stigma toward children with disabilities (but not specifically autism) in LMIC revealed the relatively poor quality of existing interventions (Smythe et al, 2020), emphasizing the urgent need for high-quality interventions in LMIC. As culture shapes the interpretation and stigmatization of autistic behaviors (Golson et al, 2022) as well as autism diagnosis (Diemer et al, 2022), interventions developed in one culture may not be effective in another. Therefore, there is a clear need for more research examining the cross-cultural generalizability of findings from anti-stigma research conducted solely in Western cultures.…”