Improving the Sexual and Reproductive Health and Health Care of Autistic People.

Abstract

The gender, sexuality, and reproductive health research node seeks to improve sexual and reproductive health care and outcomes for autistic people, with a focus on the lifespan of autistic women and lesbian, gay, bisexual, transgender, queer, intersex, and asexual individuals (LGBTQIA+). For most adults, sexuality and relationships are among the primary everyday contributors to life satisfaction, health, and well-being. Most people on the autism spectrum experience sexual attraction, and many adolescents and autistic adults are sexually active. All, including those who are not sexually active, benefit from sexual and reproductive health services. These services, which support self-determination, promote the ability to have safe, satisfying, noncoercive sexual experiences if desired and to make and implement informed decisions about reproduction. Although limited, research on sexual and reproductive health services for autistic people indicates an urgent need for investments, particularly in the areas of sexuality education; sexual violence; prenatal, perinatal, and postpartum care; and LGBTQIA+ health.Autistic people often have complex medical and educational support needs that may affect puberty, sexuality development, autonomy, and personal identity. This means they may require adapted or specialized sexual and reproductive health services, including sexuality education. Despite this, half of families raising autistic adolescents report that no health care provider ever talked with them about puberty or sexuality, and autistic adolescents are the least likely to receive school-based sexuality education compared with other disability populations.1 Service access disparities continue in adulthood, as multiple studies show 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.2Rates of parent-reported sexual victimization for autistic children and adolescents are significantly greater than rates among non-autistic youth, and autistic college students experience more unwanted sexual contact compared with their non-autistic peers.3 For autistic youth, sexual abuse in childhood has been associated with running away from home, sexual acting out or offending, and suicide,4 but there is limited information about resulting physical, mental, or sexual and reproductive health sequelae across the lifespan.Research on the obstetric health and prenatal care experiences of pregnant individuals on the autism spectrum is currently limited with a paucity of large epidemiologic studies. However, early evidence suggests that pregnant autistic people have elevated risks of several pregnancy complications and may experience exacerbations of anxiety, stress, and challenges with sensory processing as a result of the biological and social changes of pregnancy.5 We do not yet know the reasons for these disparities. One issue raised by autistic people and health care providers is that adult care providers may not be aware of the needs of autistic patients.A substantial proportion of autistic adolescents and adults are LGBTQIA+. Autistic people are more likely to be transgender or gender nonconforming compared with non-autistic people, and findings from a recent autism registry study suggest that among autistic people able to self-report on a survey, up to 18% of men and 43% of women may be sexual minorities.6 Examining the intersection of LGBTQIA+ identity and autism reveals compounded health disparities that have not been adequately addressed by insurers and service providers, particularly as individuals transition to the adult medical system. The National Survey on Health and Disability showed autistic LGBTQIA+ respondents had worse self-reported health and health care access compared with non-LGBTQIA+ autistic people, with 2 times the rate of psychiatric diagnoses, 10 times the rate of smoking, and 2 times the number of poor physical health days per month. Although most autistic LGBTQIA+ individuals in this study had health insurance, they still reported more unmet health care needs than autistic non-LGBTQIA+ individuals, and approximately one-third had been refused services by a provider.7The gender, sexuality, and reproductive health priority research area will systematically address service gaps and health disparities for autistic individuals regarding sexuality education, sexual violence prevention, reproductive health and pregnancy, and LGBTQIA+ health. We will convene a stakeholder advisory group comprising people with relevant lived experiences and conduct a needs assessment to identify urgent knowledge gaps in autistic sexual and reproductive health, prioritize sexual and reproductive health research questions, and disseminate findings to our research networks. We will identify facilitators and barriers to gynecologic, obstetric, and primary health care for autistic women and LGBTQIA+ individuals. Finally, we will develop, implement, and evaluate interventions to improve access and utilization of sexual and reproductive health care and health status for this population. An important part of this priority research area’s work will be training early career professionals in the sexual and reproductive health of autistic people and LGBTQIA+ health so that emerging priorities continue to be addressed well into the future.