For much of the 20th century, women with intellectual and developmental disabilities (IDD) faced high rates of involuntary sterilisation as part of a eugenics movement that aimed to prevent reproduction in populations deemed to have “undesirable” genetic traits 1. Although involuntary sterilisation laws were repealed in most countries in the 1970s 1, women with IDD continue to face ableist attitudes related to pregnancy and parenting, including pressure from healthcare providers and family members to terminate their pregnancies and high rates of child custody loss even in the absence of evidence of abuse or neglect 1. Recognising these barriers to the reproductive rights of women with IDD, a growing number of studies are reporting on their pregnancy outcomes, showing higher rates of severe maternal morbidity and preterm birth compared to women without IDD and those with other types of disabilities 2. However, efforts to improve equity and inclusion for women with IDD in obstetrical care settings are often hindered by the prevalent assumption that pregnancy is uncommon in this population. As such, data on fertility rates in women with IDD are critical for informing disability-inclusive care. In the most recent issue of Paediatric and Perinatal Epidemiology, Estrada and colleagues 3 report general, age-specific, and total fertility rates among 863,906 US women with IDD enrolled in Medicaid and/or Medicare between 2011 and 2022. The authors found a general fertility rate of 9.3 livebirths per 1000 women with IDD in 2011, rising slightly to 9.9 per 1000 in 2022. This study is an important addition to the literature on IDD and pregnancy. The handful of previous studies on this topic have typically examined fertility rates in women with IDD as a whole 4, obscuring important differences by IDD subtype. Notably, Estrada and colleagues found a higher general fertility rate in autistic women (e.g., 16.4 livebirths per 1000 women in 2022) compared to those with autism and intellectual disability, or intellectual disability only. This disaggregation is important because the specific ways in which obstetric care should be tailored to the needs of women with IDD differ for autistic women and those with an intellectual disability. For example, in qualitative studies, pregnant autistic individuals report the need for sensory adjustments in clinical environments (e.g., reducing noise, dimming lights, limiting touch), unambiguous and direct communication with obstetric care providers, and peer support 5. In contrast, women with intellectual disability tend to focus on the need for medical advice to be broken down into simpler, actionable steps and for advocacy from support persons to facilitate informed decision-making 6. While there certainly are also common areas of need (e.g., for respectful, anti-ableist delivery of care), data on fertility rates in IDD subgroups can help healthcare system administrators anticipate the numbers of individuals who could benefit from different types of tailored care and prioritise disability-related training and education for obstetric care providers. Estrada and colleagues also contribute new data on fertility rates among women with IDD by race and ethnicity, showing the highest fertility rates in Black non-Hispanic women with IDD. The authors offer an interesting discussion on the potential overdiagnosis of IDD among Black women and the underdiagnosis among white women. This raises important questions about who is included and who is not in population-based cohorts like these, where an IDD diagnosis is a qualifier for cohort entry. In addition to the biases described by Estrada and colleagues, a group that may be disproportionately missing from the data is autistic women. Autism has historically been underdiagnosed in girls and women due to a lack of clinician and public understanding of sex/gender differences in the presentations of autism 7. Even now, despite increasing recognition of autism in girls and women, initial misdiagnoses (e.g., with ADHD or anxiety disorders), long waiting lists, and the prohibitive costs of private assessments mean that many women do not receive an autism diagnosis until later in adulthood, with some women diagnosed after recognising symptoms in their own child 7. While some of these late-diagnosed women may be captured in Estrada and colleagues' data, it is likely many are missing, and they may differ from included women in ways that impact childbearing desires and intentions, potentially limiting the generalizability of the observed fertility rates. In addition to service planning based on known segments of the population requiring tailored care, obstetrical care should take a broader disability- and neuro-affirming approach, for example, being sensitive to the communication and learning needs identified by patients and creating sensory-friendly healthcare environments. This recognises that there may be disabled and/or autistic patients without diagnoses who could benefit from such inclusive care practices. There are additional limitations to consider. While Estrada and colleagues argue that data on Medicaid and Medicare enrollees are important for understanding demographic patterns and informing the delivery of publicly funded healthcare, the data may not be representative of the broader obstetric population. For example, in contrast to the general fertility rate of 9.9 livebirths per 1000 women with IDD reported by Estrada and colleagues in 2022, prior population-based data from Ontario, Canada's universal healthcare system, showed a general fertility rate of 20.3 livebirths per 1000 women with IDD 4. While this rate was still lower than women without IDD (who had a general fertility rate of 43.4 per 1000 women), the disparity between those with and without IDD was not nearly as large as that reflected in Estrada and colleagues' data, given the general fertility rate in the US is approximately 53.8 livebirths per 1000 women 8. While some differences across studies could be due to dissimilar healthcare systems and data available for ascertaining IDD status, the absence of data on fertility rates in women with IDD as a whole in the US risks misestimating the true frequency of pregnancy in this population, with implications for care planning and delivery. Another limitation of Estrada and colleagues' data is that they were unable to estimate fertility rates in 15- to 17-year-olds, who are typically included in fertility rate calculations. Prior studies have shown higher age-specific fertility rates in adolescents with IDD compared to similar-aged peers without IDD 4, so this exclusion results in the omission of a group who could benefit from tailored family planning services, and who should be counted in future fertility rate estimates. Data on fertility rates are useful for obstetric care planning, but they do not reflect the broader picture of pregnancy in women with IDD, including pregnancies ending in induced abortion. Estrada and colleagues present supplementary data on induced abortions and miscarriages in their cohort, but their limitations (e.g., data quality issues evident in the transition from ICD-9 to ICD-10 coding) preclude any conclusions from being drawn. Research suggests women with IDD receive considerable pressure from both healthcare providers and family members to terminate their pregnancies, often based on ableist assumptions about their parenting capabilities 1. On the other hand, later recognition of pregnancy in this group and barriers to reproductive healthcare may be obstacles to induced abortion for women with IDD who do wish to end their pregnancies 6. These prior studies' findings suggest the need for broader information on the pregnancy desires, intentions, and outcomes of women with IDD, and not just data on their livebirths, as reflected in fertility rates. For example, abortion ratios, calculated as the number of induced abortions in a population divided by the number of live births, reflect trends in unintended pregnancy and provide context for overall fertility patterns. Such data would help understand access to family planning and reproductive healthcare in this population. Taken together with the existing literature on this topic, Estrada and colleagues' study underscores the importance of obstetric care services and providers attuned to the diverse needs of women with IDD. One of the most important steps in achieving disability-inclusive obstetric care is ensuring a disability-competent healthcare workforce through enhanced training. Studies show that only 17.2% of obstetrician-gynaecologists receive any training on the provision of healthcare to women with disabilities, and only 19.3% feel adequately equipped to manage pregnancies in this population 9. Disability competency frameworks are being developed for physician training more broadly that offer important guidance on the knowledge and skills all physicians should have, such as addressing implicit biases and adapting clinical assessments to patients' cognitive and other disability-related needs 10. However, they do not consider skills unique to pregnancy care, such as having respectful conversations with women with IDD about genetic screening or supporting their informed decision-making around labour and birth. Healthcare system- and provider-level change is thus critical to ensure the pregnancy care needs of women with IDD are met. The author takes full responsibility for this article. Hilary K. Brown is supported by a Tier 2 Canada Research Chair in Disability and Reproductive Health (2024-00258). The author has nothing to report. The author declares no conflicts of interest. Data sharing not applicable to this article as no datasets were generated or analysed during the current study.
Hilary K. Brown (Tue,) studied this question.