Abstract
Autistic girls and women—defined broadly in the current chapter as autistic individuals assigned female at birth and/or currently identifying as female—experience disproportionate negative health outcomes, relative to non-autistic and autistic male populations. As researchers, practitioners, and individuals with lived experiences, the authors of the current chapter seek to inform efforts to address these significant barriers and, in turn, promote the health and well-being of autistic women across the life course.
TopBackground
Autistic girls and women—defined broadly in the current chapter as autistic individuals assigned female at birth and/or currently identifying as female (Dyar et al., 2020)—experience disproportionate negative health outcomes, relative to non-autistic and autistic male populations.
Negative health outcomes span both mental and physical health as well as both objective and subjective measures of health and well-being. As an example, population-based research reveals that reproductive-aged autistic women have poorer health compared with their non-autistic counterparts, including increased rates of chronic medical conditions and psychiatric conditions; higher use of potentially teratogenic medications; and disproportionate likelihood of having experienced assault (Tint et al., 2021). Although epidemiologic research on the obstetric health and prenatal care experiences of pregnant autistic individuals is limited, early evidence suggests that they have elevated risks of several pregnancy complications (Graham Holmes et al., 2022).
Negative health outcomes for autistic girls and women are often due to highly preventable circumstances within the interpersonal, clinic, and systemic environments of healthcare systems. The myriad barriers in the healthcare system for autistic women are far-reaching and include implicit and explicit stigma, discrimination, and rejection at both interpersonal and systemic levels; lack of access to high-quality health-promoting services and supports, and distinct challenges with implementing evidence-based preventive health practices.
Several examples of barriers to healthcare access and utilization are represented in the literature. As an example, autistic individuals are half as likely to receive basic sexual and reproductive health care, such as gynecology visits and cervical cancer screenings, compared with non-autistic individuals (Graham Holmes et al., 2022). Further, autistic women report significant challenges pertaining to healthcare anxiety, communication under emotional distress, anxiety relating to waiting rooms, support during pregnancy, and communication during childbirth (Lum et al., 2014). These barriers are linked to both provider-level factors (e.g., providers’ knowledge about autism in adults, incorrect assumptions about individual patients, willingness to allow alternative forms of communication, use of accessible language, openness to providing accommodations, and skill in appropriately incorporating supporters) and system-level factors (e.g., availability of supporters, complexity of the healthcare system, accessibility of healthcare facilities, and stigma about autism) (Nicolaidis et al., 2015).
Healthcare barriers may be compounded by experiences related to having multiple marginalized intersectional identities across the life course. As an example, research examining the intersection of Lesbian, Gay, Bisexual, Transgender, Queer, Intersex, and Asexual (LGBTQIA+) identity and autism reveals exacerbated health disparities that are not adequately addressed by insurers and service providers (Graham Holmes et al., 2022). Intersectionality in autism, however, is notably under-studied. A scoping review of Black autistic women and girls, for example, identified only three studies on this population across a 77-year period, with none adequately addressing concepts related to intersectionality (Lovelace et al., 2021). This gap in the literature perpetuates practice gaps in healthcare and impedes administration of high-quality healthcare to this population.
Key Terms in this Chapter
Augmentative and Alternative Communication (AAC): Forms of communication aside from speech which can be used in addition to or in lieu of one’s speech.
Neuro-Affirming Interventions: Interventions that are inclusive, lifespan-oriented, and focus on outcomes that matter to autistic individuals.
Self-Stigma: Internalized prejudice, shame, and fear, as well as concern about experiencing enacted stigma (I.e., overt discrimination). Self-stigma is particularly prevalent in autistic women.
Neurodiversity: A perspective that reframes autism as a valuable aspect of identity, in light of the (often negative) societal standards and expectations for autistic women.
Minority Stress: Experiencing excess social stress and stigmatized social status because of one’s identity as a minority. Minority stressors such as discrimination, internalized stigma, and camouflaging are associated with significantly worse mental health, beyond what would be attributable to general stress exposure.
Intersectionality: A theoretical framework by Crenshaw (2013) AU56: The in-text citation "Crenshaw (2013)" is not in the reference list. Please correct the citation, add the reference to the list, or delete the citation. , emphasizes the interconnected nature of social categories such as gender, race, class, and disability, recognizing that individuals can experience multiple layers of disadvantage or privilege. By taking an intersectional perspective, we aim to better understand the complex interplay of various social factors that shape the lives of autistic girls and women, promoting a more nuanced and inclusive approach to research and intervention strategies.
Camouflaging: Masking autistic traits to appear more aligned with social norms. Camouflaging is more prevalent in autistic females relative to males as they age.
Diagnostic Overshadowing: Occurs when challenges due to one diagnosis are misattributed to other diagnoses. As an example, repetitive behaviors in eating disorders may be perceived as strategies to “burn calories” rather than self-soothing or self-regulation strategies.
Autistic Girls and Women: Autistic individuals assigned female at birth and/or currently identifying as female.