Autistic People’s Perinatal Experiences II: A Survey of Childbirth and Postnatal Experiences

There has been very little work exploring autistic people’s childbirth and postnatal experiences. The experiences of those with disabilities, including those with mental health conditions and those with intellectual disability, are better documented and may help to inform understanding of autistic people’s experiences, given that such conditions often co-occur with autism and may bring similar challenges (Lai et al., 2019; Rydzewska et al., 2019).

Those with disabilities have been found to be at increased risk of poorer birth outcomes. For example, those with physical disabilities are more likely to have assisted vaginal births, planned caesarean sections and emergency caesarean sections compared with those without disabilities (Malouf et al., 2017). Furthermore, people with intellectual disability are more likely to have caesarean or induced births than people without intellectual disability (Brown et al., 2016) and to have poorer birth outcomes such as preterm delivery and low birth weight (Mitra et al., 2015). One study has explored birth outcomes for autistic people. Using Swedish national medical data from 2006–2014, this study compared the birth outcomes of 2198 autistic people and 877,742 non-autistic people (Sundelin et al., 2018). They found that autistic people had increased risk of moderately preterm birth (32 to < 37 weeks), but no difference in risk of preterm birth from 28 to < 32 weeks or preterm birth below 28 weeks. This increased risk in moderately preterm birth was likely due to increased risk of medically indicated preterm birth (preterm birth due to induction of labour or caesarean section before labour); no risk of increased spontaneous preterm birth was found. Autistic people were more likely to have an elective caesarean and more likely to have induced labour than non-autistic people.

Recent studies have identified gaps in disabled people’s childbirth and postnatal healthcare. For example, based on UK survey data from 2015, one paper found that disabled people (including those with physical disabilities, mental health conditions, sensory disabilities and intellectual disabilities) had less favourable perceptions of birth care (Malouf et al., 2017). In particular, people with physical, mental health and learning disabilities were less likely to have trust in staff, less likely to be spoken to by staff in a way they could understand, and less likely to report always being treated with respect by staff. Those with mental health and intellectual disabilities were also less likely to report that their concerns were taken seriously by staff during labour and birth. Low perceptions of healthcare were also common postnatally. During postnatal appointments, those with disabilities were less likely to feel listened to by professionals, to have trust in their midwives, and to receive the help they needed from midwives. Those with physical and mental health disabilities were also less likely to report being treated with kindness and understanding during their postnatal hospital care, less likely to report receiving support for infant feeding during their hospital stay and during the six weeks after birth, and less likely to have received sufficient information about their physical recovery after birth or possible mood changes after birth.

An analysis of UK national survey data from 2010, also found less favourable perceptions of perinatal care among people with disabilities, particularly those with mental health and learning disabilities (Redshaw et al., 2013). In addition, this study further indicated that disabled people were less likely than non-disabled people to breastfeed and less likely to be given the pain relief they wanted during labour. A further survey study focusing on those with mental health conditions found that they had lower satisfaction concerning the experience of birth and perceived maternity care less positively than those without mental health conditions (Henderson et al., 2018). This included being less likely to feel that doctors talked to them in a way they could understand, treated them respectfully and listened to them.

Furthermore, research exploring healthcare professionals’ perspectives has revealed that midwives do not feel they have sufficient training to provide appropriate care for those with mental health conditions (Noonan et al., 2018) nor intellectual disability (Homeyard et al., 2016). In addition, there is evidence from Swedish data that midwives can possess negative attitudes such as the belief that people with intellectual disability cannot satisfactorily manage the role of being a mother (Höglund et al., 2013).

Studies exploring access to healthcare for autistic people have identified sensory-related barriers to healthcare (such as difficulties with the sensory environment of healthcare facilities (Raymaker et al., 2017)), as well as communication barriers such as difficulty processing verbal information (Raymaker et al., 2017) and a need for more accessible communication formats such as written information (Nicolaidis et al., 2015). In addition, professionals across a variety of areas of healthcare report that they lack adequate knowledge and training about autism in adults (Morris et al., 2019; Urbanowicz et al., 2020). Studies focusing specifically on autistic experiences of maternity care have tended to echo these findings of sensory and communication barriers to appropriate healthcare. For example, a case study of one Australian autistic woman’s experiences reported that the woman found it challenging to cope with being touched by professionals during the birth (Rogers et al., 2017). She also reported difficulties communicating with health professionals during postnatal appointments, who she felt did not take her concerns seriously, did not treat her respectfully, and judged her parenting ability negatively due to being autistic.

Another study retrospectively explored the perinatal experiences of eight autistic women (Gardner et al., 2016). The mothers reported that, during childbirth, they experienced sensory difficulties with bright lights and the sounds of other women in labour. Sensory issues surrounding touch were also identified as making breastfeeding challenging. The mothers reported that they did not always disclose their autism diagnosis to professionals and that they required direct and clear information when interacting with professionals. They described not having had sufficient support for caring for their infant, such as understanding their baby’s facial expressions and connecting emotionally with their baby. They also felt that others had judged their parenting and desired to approach parenting on their ‘own terms’ rather than following others’ expectations. A study of 7 autistic mothers also reported sensory challenges during childbirth, such as difficulties with being touched and bright lights, and that the autistic mothers interviewed often did not feel that medical professionals understood or accommodated their sensory needs (Talcer et al., 2021). A further study reported on interviews with 24 autistic women from the USA, UK and Australia who had given birth within the previous 10 years about their experience of childbirth (Donovan, 2020). Participants expressed difficulty communicating with professionals, including difficulty conveying needs and understanding what was said to them. Difficulties in communication often led to feelings of anxiety and inhibited future attempts at communication.

Quantitative literature exploring autistic mothers’ experiences is scarce. One survey study found that autistic mothers experienced communication difficulties with professionals (e.g. teachers, clinicians, social workers) (Pohl et al., 2020). They were also more likely to feel misunderstood by professionals and were reluctant to disclose their autism diagnosis for fear that professionals would change their attitude towards them if they did so. Autistic mothers were also more likely to experience postnatal depression and less likely to feel that the process of birth was adequately explained to them. Autistic mothers were just as likely to attempt to breastfeed, though were more likely to have difficulties breastfeeding their second child.

There is currently no in-depth quantitative research focusing on the childbirth and postnatal experiences of autistic people. This study aimed to explore perceptions of birth and postnatal healthcare among autistic people, in order to identify gaps in current practice. The survey also aimed to explore birth outcomes and autistic people’s physical and sensory experiences during childbirth.

This is the first quantitative study focusing on the childbirth and postnatal experiences of autistic people. Evidence was found of atypical sensory and physical experiences during childbirth among autistic people in addition to less favourable perceptions of birth related and postnatal healthcare.

In terms of physical birth outcomes, no increased risk of induction or caesarean delivery was found in the present sample, in contrast with findings from Sundelin et al. (2018). Sundelin et al. (2018) suggest that increased risk of induction and elective caesarean may be due to a tendency for professionals to commence labour based on maternal wellbeing, possibly due to the stresses of different sensory processing among autistic people. If this is the case, this phenomenon may be less common in non-Swedish healthcare systems (such as the UK and other countries represented in the survey). It is also possible that the present study is underpowered to detect differences in birth outcomes. The groups did differ, however, on their reports of the physical experiences of birth. For example, in keeping with prior findings (Gardner et al., 2016), autistic people were more likely to feel overwhelmed by sensory input during childbirth. Similarly, autistic participants were more likely to feel overwhelmed by the sensory environment of a shared postnatal ward. These data highlight the need to make sensory accommodations for autistic people during childbirth and on the postnatal ward. The autistic group were also less likely to feel able to cope with physical symptoms following childbirth and less likely to know when to seek help with these. This complements prior findings that people with disabilities are less likely to receive sufficient information about physical recovery after birth (Malouf et al., 2017) and indicates that autistic people would benefit for greater information surrounding postnatal recovery.

The majority of autistic participants did not feel that professionals had an accurate understanding of what they were perceiving physically during birth and the autistic group were also less likely to feel aware of their bodily signals during labour. These findings suggest that professionals may need to communicate differently with autistic and non-autistic patients about their bodily signals during childbirth.

Autistic participants were less likely to feel that their birth plan was taken into account and their requests listened to during childbirth. This is in keeping with previous findings that those with disabilities are less likely to feel that their concerns are taken seriously during labour (Henderson et al., 2018; Malouf et al., 2017). Furthermore, autistic participants were less likely to feel kept informed during the birth. This echoes previous findings that autistic mothers are less likely to feel that the process of birth was adequately explained (Pohl et al., 2020) as well as findings that those with disabilities are less likely to be spoken to in a way they could understand during childbirth (Malouf et al., 2017). These results indicate the need for communication adjustments for autistic people during childbirth. These adjustments could include clearer explanations and more time to process information, given that autistic people can find processing verbal information challenging in healthcare contexts (Nicolaidis et al., 2015; Raymaker et al., 2017). It should be noted, however, that these accommodations may be less feasible during certain aspects of labour, such as the final stages.

Approximately a third of autistic participants reported having a meltdown or shutdown during the birth. Furthermore, the majority of autistic participants felt that their meltdown or shutdown was not handled optimally by professionals. This highlights the need for professionals to understand how to identify meltdowns and shutdowns among autistic patients and how to respond appropriately. While 17% of the non-autistic group reported a meltdown, only 8% reported shutting down during birth, perhaps indicating that non-autistic people are more likely to externalise than internalise their distress during childbirth. The opposite may be the case for autistic people (38% of whom reported shutting down vs. 29% who reported a meltdown). If this is the case, it would be important for professionals to be aware that distress during childbirth may be expressed differently by autistic and non-autistic patients. Having an advocate present during childbirth may be particularly important for autistic people given issues of communication (Donovan, 2020) and the possibility that shutting down during childbirth may make communication additionally challenging (as alluded to in the autistic participants’ qualitative responses). Indeed, the majority of autistic participants felt favourably about having an advocate present during the birth (as well as during postnatal appointments). For those who did not have an advocate, the autistic group were more likely than the non-autistic group to feel that an advocate would have been beneficial.

Autistic participants had less favourable perceptions of postnatal healthcare than non-autistic participants. For example, while the autistic group were no less likely to attend postnatal appointments, they were more likely to find postnatal home visits stressful. This could potentially be due to worrying that their home would be judged by professionals, given that autistic people can feel judged by healthcare professionals (Pohl et al., 2020; Rogers et al., 2017). Continuity of care during postnatal appointments was more likely to be considered important by the autistic group than the non-autistic group. Ensuring continuity of care may be an important adjustment that would improve postnatal healthcare for autistic people.

Participants tended to feel that professionals did not have a good understanding of autism during postnatal appointments. These findings fit with evidence that healthcare professionals can lack knowledge about autism (Morris et al., 2019; Urbanowicz et al., 2020) and indicates the need for greater autism-related training for maternity care professionals. This lack of knowledge may be a barrier to the provision of adequate healthcare for autistic people and may have influenced the fact that participants were often not offered autism-related adjustments during postnatal appointments. However, some participants may not have received adjustments due to not having received a diagnosis of autism or not having disclosed their diagnosis. Indeed, participants tended not to disclose their autism diagnosis during postnatal appointments, echoing prior findings that autistic mothers can be reluctant to disclose their diagnosis (Gardner et al., 2016; Pohl et al., 2020). Participants may have chosen not to disclose for fear of negative attitudes from professionals. Indeed, autistic participants were more likely to feel judged by and unable to trust professionals, and less likely to feel treated with respect in postnatal appointments. Whether or not participants disclosed their diagnosis did not predict responses to the postnatal healthcare experiences questions, perhaps indicating that disclosing a diagnosis does not impact upon autistic people’s experiences of postnatal healthcare. However, it is possible that non-significant results may be due to the small sample of those who did disclose; the issue of the impact of disclosure should be explored in larger samples.

Autistic participants were less likely to have received all the information they would have liked and less likely to be satisfied with how information was presented to them. This suggests the need for communication related adjustments for autistic people, such as being given the option of a variety of information formats (such as written or video formats), given difficulties processing verbal information (Nicolaidis et al., 2015; Raymaker et al., 2017). This need to make communication adjustments for autistic patients fits with prior findings that autistic people experience communication related barriers to healthcare (Nicolaidis et al., 2015; Raymaker et al., 2017) including maternity care (Donovan, 2020; Rogers et al., 2017). It also fits with findings that those with disabilities are less likely to be spoken to by professionals in a way they can understand in postnatal appointments (Malouf et al., 2017; Redshaw et al., 2013).

Adjustments to breastfeeding support may also be beneficial for autistic people. Similar to prior findings (Pohl et al., 2020), autistic participants were no less likely to breastfeed (in fact they were slightly more likely to breastfeed than non-autistic participants), though unlike prior findings (Pohl et al., 2020) autistic and non-autistic participants were just as likely to have difficulties breastfeeding. Autistic participants were, however, more likely to have difficulties breastfeeding due to sensory issues, as well as being less likely to find it easy to access breastfeeding support and less likely to feel satisfied with support they received. This fits with prior findings that people with disabilities are less likely to receive feeding support (Malouf et al., 2017).

Consistent with prior findings of increased risk of postnatal depression among autistic mothers (Pohl et al., 2020), the autistic group were more likely to experience postnatal depression and anxiety. It is worth noting that it is not clear how the levels of postnatal depression and anxiety reported relate to participants’ levels of depression and anxiety outside of the perinatal period; future longitudinal studies could tease apart these issues. Greater risk of postnatal depression and anxiety may in part be due to an increased prevalence of mental health difficulties among autistic people compared with the general population (Lai et al., 2019) and may also be influenced by additional stressors such as lower satisfaction with maternity care and sensory stressors during childbirth. These findings indicate the need for greater monitoring of, and support for, postnatal mental health among autistic people.

Autistic people may also receive less support from informal sources such as partners, friends and family. Peer support from other autistic parents may be beneficial for autistic people, with peer support being desired by the majority of participants though only available for a minority.

Sampling bias may have affected results. The study was only accessible to those able to complete an online survey and as such the perspectives of some autistic parents, including those with lower verbal ability, may not have been captured. The sample may also be unrepresentative due to the predominantly white, western backgrounds of the participants. Furthermore, many of the autistic group did not have a diagnosis of autism. These parents may differ in their experiences from those with a diagnosis, such as being treated differently by professionals and receiving fewer autism-related adjustments.

It is also not possible to determine whether the experiences represented are unique to autistic parents or common to parents with disabilities more broadly, given that a comparison group of parents with other disabilities was not included. It is possible that some group differences may be attributable to other factors such as the presence of other disabilities or gender identity, as these variables were not controlled for.

The survey relies on retrospective self-report. Participants reported on experiences that often occurred several years ago and this may affect the reliability of their reporting. There is some evidence that autobiographical memory may operate differently for autistic and non-autistic people, with autistic people sometimes recalling fewer memories than non-autistic people during autobiographical memory tasks (Crane & Goddard, 2008; Lind, 2010), and this may have affected the way that autistic and non-autistic participants responded to the survey. Retrospective reports may also be less relevant to current healthcare. Furthermore, participants reported on healthcare systems from a range of different countries, limiting the ability to draw conclusions specific to any particular system.

This study identifies gaps in childbirth and postnatal healthcare for autistic people. During childbirth, there is a need for awareness among professionals about how to identify and respond to meltdowns and shutdowns, in addition to awareness of the non-normative ways that autistic people may experience and express physical sensations. Adjustments to the sensory environment should be made for autistic people during childbirth and where possible autistic people should be provided their own room on the postnatal ward due to sensory challenges.

The findings also highlight the need for adjustments to postnatal appointments. These include continuity of care, the provision of information in a variety of formats and the option of an advocate. Due to potential difficulties accessing group-based support (such as breastfeeding support, drop-in clinics and parent and baby groups), the availability of one-to-one support, smaller classes or online classes may be beneficial. Autistic people may also benefit from support surrounding the sensory challenges of breastfeeding. The findings also reveal a need for greater understanding of autism among birth-related and postnatal healthcare professionals. A lack of autism understanding among professionals may discourage autistic people from disclosing their diagnosis and may be a barrier to the implementation of autism-related adjustments. In addition, autistic people may have an increased risk of postnatal depression and anxiety, highlighting the need for effective mental health screening and support for autistic people during the postnatal period.

The findings of this self-report study should be built upon with research exploring healthcare professionals’ perspectives. This would help to establish the level of autism-related knowledge maternity professionals possess and the attitudes they hold towards autistic parents. Whether or not an autistic person chooses to disclose their autism diagnosis may affect the healthcare they receive. Disclosure may lead to adjustments being made and greater understanding from professionals, however it may conversely lead to negative attitudes from professionals. Explorations of maternity professionals’ perspectives may help to elucidate how professionals respond to a disclosure of an autism diagnosis. Qualitative work could explore experiences of disclosure from the perspective of autistic patients, including barriers to disclosing, and survey methods with larger samples could focus on differences in healthcare experiences between those who have and have not disclosed. The causal mechanisms underlying increased risk of postnatal depression and anxiety should also be addressed, with both qualitative and quantitative studies assessing the role of potential predictors such as healthcare-related stressors, socio-economic factors, level of social support, hormonal factors and prior mental health history. Further research should also explore the perinatal experiences of those aspects of the autistic community commonly neglected in research by including samples with greater representation of different ethnicities, as well as non-speaking autistic people and those with intellectual disability.