Autistic Women – A Brief Overview

Research on the sex ratio of autism diagnosis suggests an approximate 3-to-1 ratio of males and females (Loomes et al., 2017). Diagnostic markers of autism spectrum disorder, such as delayed speech, first present in early childhood (American Psychiatric Association, 2022), with diagnosis typically occurring between the ages of three to six years old (van ’t Hof et al., 2021). However, girls receive a diagnosis, on average, one year later than boys (Petrou et al., 2018). This delay is often attributed to a female ‘phenotype’ (Hull et al., 2020), which presents with less externalizing symptoms (i.e., aggression), more ‘internalizing symptoms’ (i.e., anxiety) (McGillivray & Evert, 2018), and gender-stereotypical special interests (e.g., an interest in animals instead of math) (Lai et al., 2015). Notably, autistic girls may ‘mask’ their autism (Wood-Downie et al., 2021) by observing the behaviors of others and reflecting them to blend in with non-autistic peers; this is often described by autistic girls as a necessary way to socialize despite distress or disinterest in peers, causing significant strain due to the mental effort required for masking (Tierney et al., 2016).

Invisibility and a lack of support has implications for autistic women in adulthood. Autistic women face a high burden of mental health issues, with one study finding that 36–40% of autistic women are ‘severely’ or ‘extremely severely’ depressed, anxious, or stressed (McGillivray & Evert, 2018). When seeking support, autistic women report that services were often inaccessible due to cost, inappropriate tailoring for adults, lack of transportation, stigma from providers, and difficulties navigating medical systems (Tint & Weiss, 2018). Studies on autistic women diagnosed in adulthood reveal experiences such as: being punished for a ‘hidden condition’ (Leedham et al., 2020); being ‘passive’ to navigate social rules (Bargiela et al., 2016); disbelief from others after diagnosis; learning to advocate for oneself as an autistic person and a woman (Seers & Hogg, 2021); struggles relating to neurotypical women; disidentification with gender and autistic stereotypes (Kanfiszer et al., 2017); and experiencing autism not only as a condition, but as an identity (Seers & Hogg, 2023).

Autistic Mothers and Maternal Health

The transition to motherhood includes a shift in self-identity as parents re-negotiate daily life and social expectations (Hennekam et al., 2019; Laney et al., 2015). This time period also brings women into frequent contact with the medical system for prenatal care appointments, birth, and follow-up care for themselves and their infants. Prior research suggests that both autistic and non-autistic women attend the vast majority of their pregnancy related care appointments (Hampton et al., 2024), but autistic women have the unique pressure of negotiating diagnostic disclosure. In general, autistic women often face disbelief when they disclose that they are autistic, as others may minimize their struggles or claim that they seem neurotypical. (Seers & Hogg, 2021). This may particularly impact autistic mothers, who do not fit stereotypes for autistic people—after all, most people do not envision mothers as masculine, lacking in emotion, and disinterested in others.

Additionally, autistic mothers may experience poorer physical wellness in pregnancy when compared to non-autistic women due to sensorimotor differences and higher rates of other comorbid physical and mental disorders (Al-Beltagi, 2021). For example, many neurotypical women experience sensory processing changes in pregnancy, particularly smell (Cameron, 2014); autistic women experience the same changes, but they may be at a different intensity, and autistic women may already have coping strategies, having grown up with sensory sensitivities. Furthermore, physically disabled women are known to have higher rates of maternal mortality and worse overall outcomes compared to their nondisabled peers (Signore et al., 2021). Given that autistic women have higher rates of physical disabilities (Al-Beltagi, 2021), they navigate an even higher burden of inequality when attempting to access maternal care. Therefore, research into autistic women’s maternal health experiences is necessary to provide practitioners with guidance on experiences that their autistic patients are more likely to face.

How autistic women navigate medical systems and interactions with practitioners within the context of provider knowledge gaps (Morris et al., 2019) and lack of adherence to stereotypes (Kanfiszer et al., 2017) warrants additional research. Stigmatizing encounters produces insufficient care, which may create distrust and worse overall outcomes for autistic mothers. The inequality in care that results from these barriers is a reproductive injustice—without an autistic patient-centered support system, autistic mothers are invisibly pushed away from having children and raising them in a supportive environment.

Criteria and Methods

I used PubMed to conduct the search; terms are summarized below in a table. For inclusion, the population must be autistic women, either diagnosed or self-determined, who have been pregnant and/or given birth, and must be about autistic mother’s feelings and perspectives on experiences related to the prenatal, birth, and postpartum period of motherhood. Papers were excluded if: the population included autistic mothers, but only discussed infant outcomes; population did not include autistic mothers; the study separated participants by autistic traits, not diagnosis or self-determination. Papers were also excluded if they were literature reviews; studies of singular autistic participants; and commentaries. Two fields were used to exclude animal studies, as the built-in search filter on PubMed did not prove sufficient on its own.

Study Characteristics

Ten of the articles came from institutions in the United Kingdom; five came from institutions in the United States; and one article came from Australia and Ireland each. The

majority of participants came from the United Kingdom, the United States, and Australia. Only one study disclosed that at least one author is autistic (Grant et al., 2024); twelve articles sought out community advisory boards or online feedback from the autistic community. The remaining articles did not disclose community involvement. One author noted that they were the parent of an autistic child and sought feedback from a midwife who works with autistic people, but no direct autistic community advice. A diverse range of methods were used across the articles; twelve articles employed qualitative methods, and eight articles included data from both autistic and non-autistic participants.

Six major themes emerged from the literature. ‘Negative experiences with staff’ includes stigma, a lack of feeling understood by practitioners, and unwanted touching. Theme two, ‘inaccessibility’, addresses barriers to positive pregnancy, birth, and postpartum experiences, such as examination rooms that triggered sensory overload, a lack of information, and unwelcoming peer groups. ‘Sensorimotor impacts’ includes changes in sensory processing and sensory experiences with motherhood. Theme four, ‘need for support’, details areas in which autistic mothers struggle, such as postpartum depression, executive functioning, and dismissive treatment when seeking help. ‘Coping strategies’ includes tactics that autistic women use to cope with struggles, like relying on fellow neurodivergent parents. Finally, ‘being an autistic mother’ reflects the strengths and challenges of being an autistic mother and what that identity means.

Figure 1.

PRISMA diagram showing the inclusion/exclusion process of the literature review.

Negative Experiences with Staff

Across all three periods of birth—pregnancy, birth itself, and the postpartum period—negative interactions with staff were common, creating a lack of trust between patients and practitioners. In one study, out of the participants who disclosed that they were autistic (n = 59), most did not agree that the practitioner who helped them understood how autism impacted them. Most participants chose not to disclose at all (n = 355), as they feared negative bias or felt the disclosure would be unhelpful (Hampton et al., 2024). Further research shows that this pattern of disclosure avoidance often continues after birth as well (Hampton, Allison, et al., 2023; Lum et al., 2014). Social interactions with health practitioners were sometimes adversarial; one interviewee mentioned situations where midwives asked how she could be a mother if she was autistic (Hampton, Man, et al., 2023), another recalling how a doctor assumed she was incapable of managing medications (Dugdale et al., 2021).

Many participants cited poor treatment from staff as a stressor during birth (Burton, 2016; Donovan, 2020; Dugdale et al., 2021; Gardner et al., 2016; Hampton, Man, et al., 2022; Hampton, Allison, et al., 2023; Lewis et al., 2021). Inappropriate treatment included unwanted interventions during birth (Burton, 2016; Moore et al., 2024), hostility when bringing accommodations, like a blanket (Gardner et al., 2016), or being labeled as mentally unstable when stimming (self-stimulatory behavior) (Donovan, 2020). Several participants recalled miscommunication while giving birth, leading to heightened distress (Donovan, 2020; Gardner et al., 2016; Hampton, Man, et al., 2022; Hampton, Allison, et al., 2023; Lewis et al., 2021; Lum et al., 2014; Moore et al., 2024). This led to some patients feeling powerless (Lewis et al., 2021) or having meltdowns (Hampton, Man, et al., 2022). Autistic patients were dismissed when they spoke up about their pain, particularly if they appeared calm (Donovan, 2020; Dugdale et al., 2021; Lewis et al., 2021; Lum et al., 2014). Practitioners may not be educated on how sensory processing and communication is impacted by autism, particularly how someone may seem calm while being in pain. This often resulted in mistrust (Lewis et al., 2021) and masking during labor (Dugdale et al., 2021; Moore et al., 2024), further impairing communication. Compared to non-autistic women, they were significantly more likely to agree that they had problems with communicating about pain during birth (Lum et al., 2014), and autistic women were less likely to agree that the staff understood how they physically felt (40% vs. 72%). Stigma and a lack of knowledge results in practitioners not understanding their patients and giving insufficient care.

Inaccessibility

Various aspects of maternal care were noted to be inaccessible for autistic mothers. Compared to 14% of non-autistic women, 76% of autistic women found the environment of their prenatal appointments overwhelming (Hampton et al., 2024). Specific aspects included physical contact without consent (Burton, 2016; Moore et al., 2024), fluorescent lights, and the gel used in fetal heart checks (Gardner et al., 2016); one participant found the hospital so overwhelming that she experienced a shutdown (Hampton, Man, et al., 2023). Participants who disclosed that they were autistic were rarely offered accommodations, such as home visits, different waiting rooms, or longer appointments (Hampton et al., 2024). During birth, sensory stressors included bright lights (Burton, 2016; Donovan, 2020; Donovan et al., 2023; Gardner et al., 2016; Hampton, Man, et al., 2022; Lewis et al., 2021; Talcer et al., 2023) and noise from other women, staff, and babies (Gardner et al., 2016; Hampton, Man, et al., 2022; Lewis et al., 2021; Talcer et al., 2023).

Across the maternal period, poor accessibility of information was prevalent. Compared to non-autistic women, autistic mothers were less satisfied with the amount of information they received (56% vs. 80%); less satisfied with how information was presented (61% vs. 85%); and less likely to agree that they knew when to seek help related to pregnancy (67% vs. 89%) (Hampton et al., 2024). One study found that 34% of autistic women did not have the process of birth adequately explained to them, compared to 17% of non-autistic women (Pohl et al., 2020). Compared to non-autistic mothers, autistic women were less likely to agree that breastfeeding resources were appropriately suited to them (Lum et al., 2014), less likely to agree that resources were accessible, and less likely to be satisfied when they did receive support (Hampton, Allison, et al., 2023). Socialization also presented a barrier; 87% of autistic women felt that there was too much pressure to socialize at prenatal classes, 72% found the classes too large, and 64% found the classes too loud (Hampton et al., 2024). For another example, autistic mothers were recommended to peer breastfeeding groups (Grant et al., 2024; Hampton, Man, et al., 2022) and general parental support groups (Hampton, Man, et al., 2022), but often had issues with how information was delivered and with social interaction (Grant et al., 2024).

Sensorimotor impacts

Several studies found that autistic women experienced heightened sensory sensitivities, such as heightened sense of taste, sound, and touch during pregnancy (Burton, 2016; Gardner et al., 2016; Hampton et al., 2024; Hampton, Man, et al., 2023; Talcer et al., 2023). Further, while sensory processing changes for both autistic and non-autistic mothers (Hampton et al., 2024), autistic women reported changes at a higher frequency, impact to more senses, and found these changes more debilitating; for some, routine tasks, like shopping, went from difficult to unbearable (Hampton, Man, et al., 2023). In an earlier study, women reported that mundane sensations, like the smell of chicken or noises from the radio, were magnified, causing them to avoid busy environments (Gardner et al., 2016). In addition to increased sensitivity, autistic participants experienced more frequent meltdowns, worsening of pelvic girdle pain, and higher rates of severe or persistent nausea (Hampton et al., 2024; Talcer et al., 2023).

After birth, child crying and meltdowns (Burton, 2016; Hampton, Man, et al., 2022; Talcer et al., 2023), as well as the baby’s physical contact and attachment (Dugdale et al., 2021; Talcer et al., 2023) were mentioned as particularly stressful. Breastfeeding was often challenging. In two studies about autistic mothers and breastfeeding, overstimulation from the baby or from pumps was a frequent barrier to comfortably breastfeeding (Grant et al., 2024; Hampton, Man, et al., 2022; Wilson & Andrassy, 2022). While a survey found that autistic women were highly motivated to breastfeed (87.2%), many mothers (46.6%) found the ‘intensity’ difficult the majority of the time, and 27.1% experienced pain ‘all or most of the time’ (Grant et al., 2024). As such, while both non-autistic and autistic women experience changes in sensory processing, physical health, and difficulties with breastfeeding, autistic mother’s experiences were more frequent and magnified.

Need for support

Autistic women often did not have enough support across maternal care. For example, though autistic women strongly preferred seeing the same midwife at each appointment, they often saw different midwives without being informed ahead of time (Hampton et al., 2024; Moore et al., 2024). In another study, 82 participants shared negative experiences with receiving breastfeeding support, compared to just 23 participants who shared positive experiences (Grant et al., 2024). Those receiving support through at-home visits found it difficult to function if they were unsure when the visit would happen, as surprise visits can cause social stress and routine disruptions (Hampton, Man, et al., 2022). Stigma causes stress; autistic mothers are more likely to feel isolated, judged, and unable to ask for help in comparison to non-autistic mothers (Pohl et al. 2020). The majority of autistic mothers felt that autistic-specific support groups would have been beneficial (Hampton, Allison, et al., 2023). For example, new social demands related to having children, such as forming ‘play groups’ and creating a support network with other mothers was challenging (Burton, 2016; Hampton, Man, et al., 2022; Talcer et al., 2023), a challenge that may be eased by the existence of support groups for autistic mothers.

In general, autistic people often experience increased stress to their executive functioning capabilities after having children, as infant care requires large changes in routine, new skills, and accepting some amount of chaos. While the changes in routine are difficult for any new parent, autistic people often experience more distress in response to routine changes than non-autistic women (Grant et al., 2024; Hampton, Man, et al., 2022). Compared to non-autistic women, autistic mothers felt less capable of coping with multitasking (51% vs. 94%), were less likely to agree that they were organized (56% vs. 79%) and were overall less likely to feel that they were coping with the responsibilities of parenting (47% vs. 85%) (Pohl et al., 2020). For example, one mother mentioned that keeping track of and cleaning formula bottles was overwhelming (Grant et al., 2024). Additionally, over half (53%) of those surveyed had difficulties with the unpredictability of breastfeeding (Grant et al., 2024), with some women being overwhelmed with stress and anxiety around the practice (Wilson & Andrassy, 2022).

Autistic women consistently reported poor mental health. In comparison to non-autistic mothers, autistic mothers were more likely to report postpartum depression, anxiety, higher stress, and low feelings of life satisfaction (Hampton, Allison, et al., 2022). Many autistic mothers mentioned exhaustion and difficulties with coping with the demands of motherhood (Donovan et al., 2023; Dugdale et al., 2021; Grant et al., 2024; Hampton, Man, et al., 2022; Pohl et al., 2020; Talcer et al., 2023). While postpartum anxiety and depression certainly causes some of this exhaustion, the impact of internalized and externalized stigma, as well as feelings of inadequacy, has yet to be fully explored. Given that autistic women are more likely than non-autistic women to have concurrent mental health diagnosis (Hampton, Allison, et al., 2023), the stigma and lack of satisfactory support is especially hurtful.

Coping strategies

To manage anxieties related to sensory overwhelm and unpredictability, many autistic women sought ways to prepare themselves and their environment before labor (Gardner et al., 2016). Some autistic women who give birth in hospitals tour the room ahead of time to mentally prepare for labor, as an unfamiliar environment can be particularly stressful for autistic people (Gardner et al., 2016). Many women also have additional advocates with them, such as a doula, family member, or midwife (Hampton, Allison, et al., 2023), which is particularly crucial when verbal communication becomes difficult during birth. Additionally, choosing to have a c-section (Talcer et al., 2023) or an at-home birth (Burton, 2016) made some women more comfortable, as they could plan around a specific procedure or have control of their environment. Some nurses offered blindfolds or dimmer lights to reduce sensory stress (Hampton, Man, et al., 2022). Participants stressed the importance of a trusting relationship with a medical professional (Burton, 2016), as lacking a trusting relationship can lead to mothers hiding their struggles, such as postpartum depression (Donovan, 2020).

Autistic mothers relied on their own knowledge of their bodies and the support they had to adapt to the challenges of motherhood. While autistic women were less likely than non-autistic women to feel sufficiently supported (Hampton, Allison, et al., 2023; Pohl et al., 2020), many still shared their experiences with reaching out to family (Burton, 2016; Gardner et al., 2016), or relying on their partners for help (Dugdale et al., 2021; Grant et al., 2024). Autistic women often sought out support from other neurodivergent friends who had children (Dugdale et al., 2021) or used online support groups to exchange information and seek support from other autistic mothers (Talcer et al., 2023). Additionally, to cope with specific sensory stressors, autistic women sought time for themselves to rest (Hampton, Man, et al., 2022; Talcer et al., 2023) and distracted themselves while breastfeeding (Grant et al., 2024; Wilson & Andrassy, 2022).

Being an autistic mother

Pregnancy creates unique social interactions, as pregnant people attend prenatal appointments where they interact with practitioners, prenatal classes with other mothers, ask for help within their families, and even questions from strangers. These situations may be particularly taxing for autistic women. While some autistic pregnant women found conversations with strangers pleasant, since they were often specific questions (i.e., “when is the baby due?), others found the unsolicited attention tiring (Hampton, Man, et al., 2023). Other social experiences were also experienced differently. While many women felt an instant connection with their infant, some women had less immediate bonding experiences (Donovan et al., 2023; Gardner et al., 2016). For example, one mother noted that ‘pretend play’ was not something she felt capable of doing with her child due in part to being autistic (Dugdale et al., 2021). Notably, some women felt that breastfeeding improved their ability to bond with their child and read their cues (Gardner et al., 2016; Grant et al., 2024).

Several autistic mothers discussed their intense bond with their child (Burton, 2016; Donovan et al., 2023; Dugdale et al., 2021; Grant et al., 2024; Hampton, Man, et al., 2022). Despite the stereotype that autistic people are lacking in empathy and disinterested in others, some mothers felt that they had intense empathy for their baby (Burton, 2016), with one mother feeling protective when her baby anxiously cried, as she didn’t “want her to feel [anxious] the way that I did” (Dugdale et al., 2021). Mothers found various aspects of parenting rewarding, such as watching their child’s developmental progress (Dugdale et al., 2021) and thinking about teaching them (Hampton, Man, et al., 2022). Additionally, mothers mentioned positive aspects related to their own personal growth, such as becoming more flexible with routine changes (Dugdale et al., 2021) and being able to handle environments that previously caused sensory overload (Hampton, Man, et al., 2022). While autistic mothers do face greater struggles and barriers than non-autistic women, the majority of autistic mothers (86%) still agree that motherhood has been a rewarding experience (Pohl et al., 2020).

Conclusion and Recommendations

The research here demonstrates significant disparities in how autistic women receive and experience maternal care: they are significantly more likely to have stigmatizing encounters with staff, less likely to have adequate support, and have to find unique coping strategies on their own. As an increasing number of people are diagnosed with Autism Spectrum Disorder each year (Dietz et al., 2020), it is critical for healthcare systems to adapt to support the growing population of adults with autism. Structural barriers, such as neurotypical-centered support groups, stigma towards disability and reproductive freedom, and power dynamics between practitioners and patients prevent autistic mothers from having adequate maternal health experiences. To begin to address these issues, healthcare practitioners may consider collaborating with autistic experts, researchers, and patients, so they can apply their knowledge, experiences, and priorities to lead projects to improve access for autistic mothers. Within the framework of reproductive justice, this presents a barrier to autistic women in pursuing the right to have children, and the right to raise them in a supportive environment. This research presents how autistic mothers face an uphill battle in advocating for themselves—it is time for the healthcare system to advocate back.