Obstetric Care and Pregnancy Health in Autistic Individuals and Those with Other Developmental Disabilities in an Integrated Health Care Setting in California

Introduction

Disabled people, who represent about 10% of individuals in the United States of child-bearing capacity, typically have lower access to reproductive health resources, including contraceptive counseling and use,^1-3 compared with nondisabled people. Women with disabilities also tend to have higher rates of co-occurring conditions, including chronic diseases such as diabetes and heart disease that are not directly related to their disabilities.^4,5 These challenges may contribute to this population’s elevated risk of unintended pregnancy ¹ and suboptimal birth outcomes including preterm birth, low birthweight, and cesarean delivery.^6-8 Many obstetrics/gynecology providers recognize that their lack of training in the special health care needs of women with disabilities factors into this population receiving suboptimal reproductive health care.^9-11

The literature on pregnancy-related experiences among people with disabilities has generally focused on populations defined broadly by limited mobility, intellectual disability, and hearing/visual loss. ⁸ Few studies have specifically examined the experiences of those with developmental disabilities (DDs) such as autism. Autism diagnosis is more prevalent in males but is one of the most common DDs in people assigned female at birth (AFAB), affecting 1.5% of those aged 3–17 years old today. ¹² Although autism is a lifelong condition that is typically diagnosed in childhood today, it has been historically underdiagnosed in girls, women, and older cohorts.^13,14 Consequently, many health care providers are unaware of its presence in their adult female patients. ¹⁵ Furthermore, traits of autism such as challenges with social understanding and communication, sensory sensitivity, and behavioral difficulties are often “invisible,” making it difficult for autistic individuals to obtain accommodations in health care and other settings. Unmet needs may be particularly high among the large proportion of AFAB individuals diagnosed later in life, who may not have known about available accommodations during the time of their prenatal care.^16,17

As the population of autistic adults continues to grow, emerging evidence underscores the need for more attention to and support of autistic pregnant people. For example, in Swedish nation-wide registry data, autistic mothers were more likely to have pre-eclampsia, preterm birth, and deliveries via elective induction or cesarean section relative to non-autistic peers. ¹⁸ A large study of Medicaid enrollees also found increased rates of pre-eclampsia as well as gestational hypertension, gestational diabetes, and postpartum anxiety and depression among autistic birthing people relative to people without DDs. ¹⁹ Mothers in Japan with greater autistic traits were also found to have a higher risk of preterm birth and babies born small for gestational age. ¹⁷ Qualitative interviews and survey studies, conducted in convenience samples from the United States and the United Kingdom, have found that autistic mothers may be more likely than non-autistic peers to experience anxiety and depression during pregnancy and postpartum, to have traumatic experiences in childbirth, and to raise their children as single parents.^16,20-22 Autistic people may take medications during pregnancy to treat psychiatric and medical diagnoses that commonly co-occur with autism such as anxiety, attention-deficit/hyperactivity disorder (ADHD), depression, and epilepsy. ¹⁹ These medications may be potentially teratogenic and increase the risk of birth complications.^5,23,24 Lastly, autistic individuals are also at high risk of experiencing intimate partner abuse, ²⁵ posttraumatic stress, and low social support,^21,26 which can negatively impact their pregnancy experiences.

While a handful of studies have examined prenatal care among people with disabilities and found disparities in access,^27,28 no large studies have specifically described obstetric care utilization in autistic pregnant people. Using electronic health records (EHRs) from a large integrated health care system in California, we aimed to compare pregnancy-related health and obstetric care utilization among autistic people, those with other DDs, and peers with neither condition from the general population (GP). A better understanding of prenatal care use and obstetric risks may inform improvements to health care delivery to better support positive pregnancy and postpartum health in these disability populations.

Methods

Results

In the autistic sample, 75% of the pregnancies occurred between 2010 and 2024 (Table 1). In the DD sample, which was not matched on pregnancy onset year to the autistic group, 56% of pregnancies occurred during this period. The pregnancy onset age of the autistic group was on average 3 years younger than in the DD and GP groups (27 years vs. 30 years old). Autistic and DD groups were more likely than GP to be White, Non-Hispanic (61% and 42% vs. 34%), have government-subsidized health insurance (26% and 25% vs. 11%), and use primary care (77% and 72% vs. 64%) and mental health care (33% and 11% vs. 7%) in the year preceding the pregnancy onset. Neighborhood socioeconomic position was similar between the autistic and GP groups, but a slightly larger proportion of the DD group resided in neighborhoods in the highest quartile of neighborhood deprivation.

Compared with GP peers, autistic individuals had lower odds of having a live birth (adj-odds ratio [OR]: 0.73, 95% confidence interval [CI]: 0.59, 0.90) and higher odds of having a therapeutic abortion (adj-OR: 1.48, 95% CI: 1.12, 1.96; Table 2). Odds of live birth were also lower among the DD group relative to GP (adj-OR: 0.91, 95% CI: 0.84, 0.98), but rates of therapeutic abortion among the DD group did not differ from GP after adjustment for covariates. Occurrences of stillbirth, molar, or ectopic pregnancies (grouped together due to small counts) were more common in both the autistic and DD groups. However, only the DD group exhibited a statistically significant difference from the GP group (adj-OR: 1.52, 95% CI: 1.20, 1.93). We did not see differences across the groups with respect to spontaneous abortion.

Among pregnancies resulting in live births, pregnancy-related vomiting, including a severe condition called hyperemesis gravidarum, was the only pregnancy complication that was significantly higher in the autistic group relative to the GP group (adj-OR: 2.71, 95% CI: 1.54, 4.78; Table 3). Hyperemesis gravidarum (adj-OR: 1.48, 95% CI: 1.14, 1.94) and pre-eclampsia (adj-OR: 1.32, 95% CI: 1.11, 1.56) and gestational hypertension (adj-OR: 1.22, 95% CI: 1.07, 1.38) were significantly elevated in the DD group relative to the GP. The odds of gestational diabetes mellitus (GDM) were similar among all the groups.

The autistic and DD groups had substantially more adverse mental health outcomes than the GP group in the year preceding pregnancy onset, during pregnancy, and in the 12 months postpartum (Table 3). While the prevalence of depression increased among all groups during pregnancy, the prevalence was highest among the autistic group (53%). The adjusted odds of depression during the pre-pregnancy, pregnancy, and postpartum periods were 2.7- to 5.7-fold greater in the autistic group and 1.8–2.3-fold greater in the DD group relative to the GP group. The prevalence of anxiety remained relatively stable before, during, and after pregnancy across the three groups, yet it was higher in the autistic and DD groups relative to the GP group in all periods. The autistic and DD groups were 2.16 times (95% CI: 1.30, 3.62) and 1.39 times (95% CI: 1.09, 1.77) more likely to have documentation of intimate partner violence in the 2 years before pregnancy or during pregnancy than the GP group.

Babies of the autistic and DD groups were more likely than babies of the GP group to be born preterm (adj-OR: 1.83, 95% CI: 1.16, 2.88 and adj-OR: 1.95, 95% CI: 1.66, 2.29, respectively) (Table 3). Babies born to those in the autistic and DD groups were also 2.76 (95% CI: 1.28, 5.96) and 1.57 (95% CI: 1.12, 2.21) times as likely to have low 5-minute Apgar scores compared with babies from the GP group. Babies from the DD group were also more likely than those in the GP group to be small for gestational age and to be admitted to the neonatal intensive care unit (NICU).

Utilization of several types of obstetric care significantly differed between the three groups (Table 4). While all groups were similarly likely to start prenatal care in the first trimester, the mean number of prenatal visits across pregnancy was 8% higher (95% CI: 3%, 14%) in the autistic group and 5% higher (95% CI: 3%,7%) in the DD group than in the GP group. Both the autistic (adj-OR: 1.62, 95% CI: 1.18, 2.22) and DD groups (adj-OR: 1.54, 95% CI: 1.38, 1.73) were more likely to deliver by cesarean section compared with the GP group. Relatedly, scheduled early delivery by cesarean was also 30–50% more common among the autistic and DD groups than the GP group, although these differences were only statistically significant in the DD vs. GP comparison. Both of these groups were also 1.6–2.2 times as likely to visit the emergency department (ED) either during pregnancy or in the first 6 months postpartum than the GP group. In addition, the DD group was significantly more likely than the GP group to be hospitalized during pregnancy and postpartum. Conversely, the DD group was less likely than GP to have augmentation/induction procedures during delivery (adj-OR: 0.88, 95% CI: 0.78, 0.99) and to have a postpartum visit (adj-OR: 0.86, 95% CI: 0.75, 0.99). While overall rates of GDM screening were high across all groups (>90%), the autistic and DD groups were less likely to be screened, both at any time and specifically in the recommended 24–28 week window than the GP group. However, most of these differences were not statistically significant after adjusting for covariates. Uptake of recommended Tdap vaccination during pregnancy did not differ between the groups, but the autistic group was more likely to receive an influenza vaccine during pregnancy than both the DD and GP groups.

Discussion

In this population-based sample of patients receiving care from the same integrated health care system in California, we found both shared and unique risks of pregnancy complications as well as patterns of obstetric care among autistic individuals and those with other DD relative to GP. Individuals diagnosed with autism or other DDs were less likely than GP peers to have pregnancies ending in live birth and were at higher risk of complications both during and after pregnancy. Both groups had higher likelihoods of pregnancy-related vomiting, particularly hyperemesis gravidarum, preterm birth, and babies with low 5-minute Apgar scores. Pregnant people with other DD also had increased risks of pre-eclampsia/eclampsia, gestational hypertension, small-for-gestational age babies, and NICU admission. However, we observed the largest disparities between these groups and GP peers on indicators of mental health during pregnancy and postpartum, with the highest rates of perinatal depression and anxiety observed among autistic individuals. While the use of standard prenatal care was generally similar between the groups, both the autistic and DD groups were more likely to use the ED during the pregnancy and postpartum periods and deliver via c-section.

A previous study, based in Medicaid, reported a higher incidence of miscarriage, stillbirth, and therapeutic abortion in autistic birthing people compared with peers without intellectual disabilities and DDs. ¹⁹ Our study disaggregated these pregnancy outcomes, finding that therapeutic abortion was more common in the autistic group than in the other study groups. While we do not know the reasons for therapeutic abortion, there are several possibilities that could explain this finding in the autistic group. Previous work demonstrates that people with DDs, including autism, have lower access to sexual education resources, are less likely to be prescribed hormonal contraceptives,^1-3 and are more likely to experience sexual victimization ²⁵ and unwanted or regretted sexual encounters ³² than people without DDs. These factors could increase the risk of unintended or unwanted pregnancy. Furthermore, patients with disabilities may terminate the pregnancy on the advice or direction of conservators, family members, or clinicians who often play a large role in the patient’s health care decision-making. ³³ Lastly, autistic people often experience heightened sensory challenges during pregnancy,^21,34,35 including hyperemesis gravidarum—a severe form of nausea and vomiting—which we found to be more prevalent in the autistic group in our study. In a previous survey of people with this condition, many chose therapeutic abortion because of their symptoms. ³⁶ Greater understanding of the reasons that autistic people use therapeutic abortion is needed to better address and support the reproductive autonomy of this population.

Prior work, primarily from qualitative interviews and survey studies, corroborates our finding of a higher prevalence of depression and anxiety during and after pregnancy in autistic people^16,19,21,22 and people with DD more broadly compared with nondisabled peers.^37-39 Depression and anxiety often co-occur with autism and other DD, affecting up to 35% of autistic women across all ages, ⁵ which can predispose these groups to poor perinatal mental health. However, several additional factors in the perinatal period may further increase risk or make symptoms worse. For example, autistic and DD pregnant individuals commonly experience known risk factors for perinatal depression, including intimate partner abuse and pregnancy complications, which we observed in our sample, as well as a history of trauma before pregnancy and low social support.^18,40,26 Autistic people may also experience greater stress than non-autistic counterparts with respect to the wide range of social and sensory changes during pregnancy, including the attention it brings, the frequent health care appointments and procedures, and heightened sensitivity to odors, physical touch, lights, and noisy environments.^41,42 Although we lacked sufficient data to examine it, LGBTQ+ identity, which is more common in autistic than non-autistic people, ⁴³ is also linked to greater vulnerability to perinatal mental health problems. ⁴⁴

Within the autistic and DD groups, the prevalences of depression and anxiety diagnosis in the postpartum period returned to or fell below their pre-pregnancy levels. A decline in psychiatric symptoms in autistic people between the pregnancy and postpartum period was also observed in a small survey study. ²⁰ Whether this is attributable to a true decrease in symptoms after delivery, missed screening, or patient under-reporting merits further study.

We found an elevated risk of hypertensive disorders of pregnancy among the DD group but not among the autistic group relative to GP peers. This finding is in line with previous reports of an increased risk of pre-eclampsia and gestational hypertension among pregnant people with intellectual disabilities and DDs from studies in Canada, ³⁷ Australia, ⁴⁵ and the United States.^46,47 Several possibilities may explain this increased risk, including cooccurring conditions such as pre-existing hypertension, lifestyle factors such as lower diet quality and physical activity, as well as social determinants of health such as low social support and neighborhood factors. ⁴⁸ Interestingly, we did not see disparities in the autistic and DD groups for GDM, aligning with some previous evidence in pregnant people with DDs,^37,49 although not with recent findings in Medicaid data. ¹⁸

Several birth complications were also more common in the autistic and other DD groups relative to the GP. Notably, preterm birth was about 2-fold more likely in the autistic and DD groups relative to GP. Clinical diagnosis of autism and greater autistic traits in birthing people have also been associated with preterm birth in the Medicaid population and GP samples from Sweden and Japan.^17-19 Other studies have also reported higher risk of preterm birth in the broader pregnant population with intellectual disabilities and DDs,^7,8,46,50,51 underscoring the need for better understanding of the underlying risk factors and prevention strategies for both preterm births that are spontaneous or medically indicated. Known risk factors for preterm birth include prenatal depression, ⁵² intimate partner abuse, ⁵³ gestational hypertensive disorders, ⁵⁴ and hyperemesis gravidarum, ⁵⁵ which were elevated in our autistic and DD samples. Babies born to those with other DD were also more likely to be small for gestational age and be admitted to the NICU than those in the GP group, echoing findings from studies in the United States and Canada.^{7,37,49,50,56}

We also observed higher likelihood of c-section and slightly more prenatal visits in the autistic and DD groups. Other studies have also documented a higher rate of c-section in birthing people with DDs, likely influenced by their increased risk of pregnancy complications (e.g., gestational hypertension and diabetes), although additional research is needed to fully understand the reasons. We did not see disparities in uptake of recommended screenings, immunizations, and epidural use in these groups relative to the GP. This is in contrast to other studies in samples of individuals with either autism only or intellectual disabilities and DDs broadly that have found these groups to be less likely than peers without these disabilities to initiate prenatal care in the first trimester or to attend the recommended number of appointments.^{7,16,27,47,57} As an integrated health care system, KPNC has active outreach to all obstetric patients, which may have resulted in high use of prenatal care and universal screenings across groups. Nevertheless, despite these high screening rates, GDM screening was less likely to be done on time in the autistic and DD groups, which could lead to missed diagnoses or delayed management of GDM and may represent an area for more targeted outreach.

Both the autistic and DD groups were more likely than the GP to use the ED during pregnancy and in the 6 months postpartum, perhaps indicating that standard prenatal and postpartum care is not adequately meeting the health care needs of this population. In fact, the DD group in our study was less likely than the GP group to have a postpartum visit within 12 months and more likely to be hospitalized both during pregnancy and in the 6 months postpartum. These latter findings corroborate similar trends observed in other US-based studies of postpartum among people with DDs. ⁵⁸ Negative interactions, including miscommunication or perceptions of being judged or disrespected by prenatal providers, may reduce engagement with routine care both during pregnancy and postpartum.^41,59,60 Autistic patients and peers with other DD also tend to have more chronic health conditions than the GP, which can lead to greater use of the ED in general.^5,61 However, earlier studies at KPNC have not observed significantly elevated ED use among autistic versus non-autistic women.^62,63 The postpartum period merits closer scrutiny to better understand how to tailor postpartum outreach and care to this population.

Our study has several notable strengths. First, using the comprehensive medical records of KPNC’s integrated health care system, we were able to examine a wider range of pregnancy-related diagnoses and perinatal care indicators than has been included in previous studies of this topic. Furthermore, the KPNC population is socioeconomically and racially diverse, serving a mix of members on both private and public insurance. ⁶⁴ KPNC has also implemented universal GDM screening since 2006 and universal perinatal mental health screening since 2011, which reduces bias in the ascertainment of these conditions during pregnancy.

Nevertheless, there are some limitations to this analysis. First, our sample of autistic people with pregnancy histories was relatively small, which reduced our statistical power to rule out several potential pregnancy-related risks that were elevated in the autistic group but not statistically significantly different in comparison with the GP (e.g., gestational hypertension and large-for-gestational age babies). There are several reasons to expect that the actual prevalence of autistic people experiencing pregnancy is much larger, both in our health system and elsewhere. For example, autism is underdiagnosed in older cohorts ¹⁴ and has historically been underdiagnosed in AFAB individuals, in part due to diagnostic criteria developed based on male presentations of autism and social masking of autism in girls and women. ¹³ While we included individuals who received autism diagnoses in childhood through adulthood, it is also common for many AFAB adults to become aware of their autism after pregnancy when their children are diagnosed with autism, at which point it can be challenging to receive a formal diagnosis from an adult specialist. Second, we had incomplete information on gravidity and parity, key factors that may modify or confound the associations we observed.

Third, patterns of obstetric care and record-keeping changed over the course of the study period, which may have led to lower detection or documentation of certain diagnoses or procedures in earlier years. Although this likely did not affect the autistic versus GP comparisons, which were matched on pregnancy year, it may have influenced the differences seen in the DD group. Lastly, we did not match groups on sociodemographic variables such as age, race/ethnicity, or insurance type. While we adjusted for these factors in regression models, we recognize that adjustment is not equivalent to matching and some residual confounding may remain. This decision was intentional, as our primary aim was descriptive and preserving the differences in these characteristics allows for future examination of how sociodemographic factors and disability intersect to influence obstetric health.

Conclusion

These findings, drawing attention to potential pregnancy-related health and health care disparities, underscore significant opportunities for researchers, health care providers, and policymakers to improve the obstetric care of people with autism and other DDs. Given that these findings reflect care in an integrated health care system with strong obstetric care programs, it is likely that the disparities we observed may be more prominent in the wider U.S. population of pregnant people with autism and other DDs. Key priority areas emerging from our findings include expanding access to family planning services, enhancing quality of prenatal and postpartum care, and strengthening perinatal mental health support.

Future studies should incorporate community-engagement and patient perspectives to deepen understanding of this population’s pregnancy and obstetric care experiences, improve provider training on the specific care needs of pregnant people with autism and DDs, and develop comprehensive care models and accessible educational resources tailored to the unique needs of each disability community. Additionally, a closer examination of common co-occurring conditions, including depression, ADHD, eating disorders, hypermobility conditions, and sleep disorders, may also be valuable to establish evidence-based, individualized guidance for disabled pregnant people on how to best manage obstetric risks, nutrition and physical activity, and medications before, during, and after pregnancy.