Episode 7: Autism, Pregnancy & Parenthood

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No AI is used at any point in this podcast.

This podcast explores recently published research on a number of different neurodivergent types. This season I am talking about autism, and in this episode I will go over some recent research on autism in relation to pregnancy, parenting and sexual education, as experienced by autistic people who can become pregnant and become autistic parents. Sexual abuse and sexual education in schools will be talked about in this episode, so please mind yourself if you think that would distress you. Some support services for sexual abuse is listed in the show notes. Unless otherwise specified, the research I have done for this and all episodes do not include those with intellectual challenges in conjunction with autism characteristics. While I will describe autistic characteristics in this episode, I also recognise that every autistic person will experience autism differently, and these are not specific to every person who identifies as autistic.

Autistic people assigned female at birth who become parents were also, at one point in their lives, autistic young adults or teenagers who were entering a sexual adult life-stage. Therefore, I will begin with current academic literature that has discussed matters that relate to autistic children going through puberty and their experiences of becoming sexually and romantically active. Some papers include information about sexual abuse, coercion, and violence, and I include this information as it is relevant, but I won’t dwell on it, as I recognise that there are those who will find this particularly difficult to listen to. While there is more research about autistic parenting relating to people assigned female at birth, where relevant, I will include information about those assigned male at birth as well.

The website Autism.org tells us that autistic youth are three to four times more likely than non-autistic youth to experience sexual victimization, and between 40% and 50% of autistic adults report experiences of sexual abuse during childhood (2024a). Like the general population, girls, women, and female-presenting autistic individuals are at higher risk for experiencing sexual victimization and violence (ibid). An online survey found that as many as nine autistic women out of every ten have experienced sexual violence, where 75% out of 225 study participants reported that their first experience occurred during childhood or adolescence (ibid). What can research tell us about why these sexual abuse rates are so high for autistic people? Barnett and Maticka-Tyndale (2015) found that autistic sexual abuse research methods may be cloaking some of the reasons. For example, by comparing the sexual and romantic experiences of autistic people against neurotypical people, researchers may be reaffirming the normativity of neurotypical ways of doing and being while pushing autistic ways of doing and being to the margins (Barnett and Maticka-Tyndale, 2015). Barnett and Maticka-Tyndale (2015) stated that neurotypical individuals’ ways of experiencing sexuality should be rejected as a standard for comparison, as autistic people’s sexuality was distinctive from normative, neurotypical sexuality in three key ways: First, participants expressed a considerable degree of gender nonconformity in both identity and presentation; Second, more participants endorsed a non-heterosexual identity than a heterosexual one; and Third, delayed sexual and relationship debut was common in their findings. Each of these was experienced by autistic participants as a deviation from the norm and exacerbated by the inadequacy of available sex education in schools. The participants in this study were US residents aged between 18-61, so the sexual education referenced by them may have experienced changes since they were in formal education as teenagers, and could also have happened in other countries. However, the sexual education they reported was almost uniformly inadequate in their opinion, and was pervasively heteronormative – meaning the education was based on assumptions that students were heterosexual themselves (Barnett and Maticka-Tundale, 2015). Participants also expressed concern about their school’s failure to address disability-relevant sexual experiences, and to be literal about the information they were trying to convey (ibid). As nuanced social communication can be difficult for autistic people, and considering the importance of sexual education, this was very problematic. Complaints about the inadequacy of sex education in school are not unique to this study, or to persons with disabilities, as youth in general report that they do not receive adequate information or opportunities to build sociosexual skills (ibid.; Holmes, 2023). While this speaks to the need for more robust sex education for all students, inadequate school-based programs are especially problematic for anyone whose life does not fit the cisgendered (meaning a gender identity that does not differ from that assigned at birth), heterosexual, abled norm. When one fits this norm, one can learn about sociosexuality by observing the social world around oneself. When one does not fit this norm, it is not possible to learn through observation, and forums for self-education (e.g., websites, books) are severely limited. Reliance on self-education through observation and interaction is further problematic for autistic people who often do not learn information this way, and instead require information to be directly and explicitly communicated. Emerging research from Holmes (2023) suggests that many autistic people are denied equitable access to sexual and reproductive health services during adolescence and over their lifespans. Autistic people are less likely to receive this education in school compared to non-autistic peers or youth with other disabilities (ibid), rarely receive proactive sexual health services through Medicaid programs, are at greater risk of pregnancy complications, and are less likely to receive routine pelvic exams compared to non-autistic controls or people with other disabilities (ibid).

If sexual education is not being well managed for autistic people in schools, who is helping them out instead? Crehan, Schwartz, and Schmidt (2023) found that there may be a diffusion of responsibility occurring in sexual health education for autistic young adults. Parents and school-based professionals had differing perceptions on who is teaching which topics, and did not agree on who should be teaching what (ibid). Clarity and planning around delivering sexual health would be instrumental in minimising the gaps to sexual health education. Through focus groups with affected young adults, four barriers to sexual health information were identified: values and cultural issues; parental attitudes toward their child’s sexuality; a lack of organisational policies and standards; and limited professional education and societal biases (ibid). In practice, a lack of organisational policies or standards means that there are not specific ages where medical professionals or educators are checking understanding about sexual health topics. Or if parents anticipate that doctors will cover or ask about sexual health topics, yet their doctor has not had training on sexual health topics, an autistic child may miss out on this information altogether. Discrepancies between parents’ and school professionals’ expectations and actual education identified in research from Crehan, Schwartz, and Schmidt (2023) would likely be rectified if the barriers identified were minimised. Policy relating to the delivery of sexual health education for autistic young adults would better prepare individuals for healthy and positive relationships. Devastatingly, many autistic young adults have either already been abused as children, or are vulnerable to abuse and coercion (Day, 2023). In an online article about autistic celebrity Christine McGuinness (Day, 2023) who talked about her experiences of sexual abuse, Dr Sarah Lister Brook was quoted saying that a large number of autistic women and girls report experiences of sexual assault. Dr Brook is the clinical director at the National Autistic Society. She explained that this can be coercive, physical or sexual abuse. The article reported results from an online French study of 225 participants, that nearly nine in ten autistic women have been subjected to sexual violence. Understanding how autistic people are sexualised and abused, and let down by systems that need to help them understand how sexuality works in society in ways that are appropriate to autistic young people, are vitally important as protective measures against this abuse.

This context is important when we move on to consider the experiences of autistic parents. If the statistics show in research that many autistic people have suffered sexual abuse and not been protected by traditional systems like schools, the medical profession and even their families, then let’s see what the research tells us of their experiences when they begin families themselves.

While the term ‘autism parent’ refers strictly to a non-autistic parent with an autistic child, an ‘autistic parent’ may have an autistic or an non-autistic child (Fletcher-Randle, 2022). Given that there is considerable diversity within the autistic community, including race, gender, class, sexuality, neurodiversity, and more, and no two autistic people have the same experiences, there may still be significant unresearched diversity within and among these relationships (ibid). Further, children are often raised by more than one parent, and parents may raise more than one child. Parents with autistic children also sometimes decide to have their own assessment in later-life as they recognise their own characteristics in their children. Some people in the autism research found for this episode self-identified as autistic and are of course included, reflecting the privileged position of some being able to have an assessment in the first place and the validity of self-identifying as autistic. It can be expensive and time-consuming, and not available for everyone who wants an assessment.

Autistic parents may experience similar challenges as autism parents in navigating situational challenges and neurodiversity within the family, but there is not much research exploring their experiences (Fletcher-Randle, 2022). While some studies explore the quality of life of autistic parents, focusing exclusively on the experiences of mothers and women, others have focused on the needs of autistic women during pregnancy and childbirth (ibid). There is limited research available that focuses on autistic parents and their parenting. Some of the following research papers introduce concepts such as whether autistic parents are able to recognise distress in their children and give appropriate care. This is a stereotype of autistic parenting and a dangerous one, especially as we know that autistic people have different characteristics from each other, and no two autistics are the same. Where this concept comes up in the research I will include only relevant research within the paper. This may be a neurotypical and stereotypical idea or assumption about autistic parents who should not be collectively categorised by perceived weaknesses, but on individual cases of parents who may want support. Strengths and failings should be supported case by case, just like neurotypical parents. Any stereotypes must be reported in research to avoid perpetuating them, however unintentionally. Early scientific theories blamed mothers for their children’s conditions, such as autism, and the most notable example came from Bruno Bettleheim’s 1950s theory of the ‘refrigerator mother’ or ‘refrigerator parent’, where the cause of autism was said to be a lack of maternal emotional warmth (Bumiller, 2008). These terms also applied to schizophrenia in children and are now regarded as stigmatising and thankfully are no longer used. The term ‘mother’ in birth is subjective and excludes non-cis pregnant people, and ‘maternal’ post-birth experiences can also relate to any carer such as the father, a sibling, friend, etc. (Robertson, 2014).

As we have seen throughout the season so far, there is a distinct lack of research on the intersection of autism and communities of colour, and racial, ethnic and immigrant minorities, as well as those who experience a non-normative gender identity. Most autism research also happens in the global north, and huge areas of the world and populations of people are not included in autism research (McDonnell and Delucia, 2021). Most papers here have expressed the need for future research in all these areas, and where these communities have been researched, I will make sure to try to include the findings. If you find research you think has been missed here, please let me know.

Robertson (2014) writes about the concept of the “misfit”, a term elaborated on by feminist disability theorist Rosemarie Garland-Thompson, which demonstrates how disability theory might illuminate certain experiences of mothering. Individual accounts of motherhood can lead to either essentialising motherhood - which generalises to the extent that difference is silenced or marginalised ­ or to individualising motherhood, which risks weakening the power of the collective. This dilemma may be overcome by focusing instead on what Garland-Thompson calls ‘specific instances of mothering in specific contexts, the feminist disability studies practice of putting story in the service of theory’ (ibid). Like women, the disabled person has been associated with vulnerability, inferiority and dependence. In general usage, misfit is a term that describes both a situation (the classic square peg in a round hole) and a person, someone considered odd, who is therefore rejected by others. The term fit, on the other hand, describes both filling a space well, being well-adapted and nowadays also means good looking or attractive. In her work, Garland-Thomson uses these entomological cues to explore the way fit and misfit can be used to explore the experience of disability in time and place (ibid). The fit or misfit occurs at the spatial and temporal points of encounter between body and environment. Most of the space we navigate is designed around majority bodies, that is, non­disabled bodies and minds. This creates a misfit at certain times and places for certain minority bodies and minds (ibid). In relation to autistic parents, the misfit occurs at the intersection of individual autistic characteristics, parenthood and birth, and socially constructed ideas of disability and autism stereotypes. Although parents with disability experience a lack of accessibility when it comes to parenting their children and accessing services or venues related to being a parent, women with disability tend to experi­ence much more than just lack of accessibility (Camilleri Zahra, 2023). Women with disability tend to also experience judgement and negative attitudes towards them, including assumptions about them and their lives, when getting pregnant or even at the mere mention of saying that they want to have a child (ibid). In addition, women with disability also experience judgements on their ability to parent and as a result very often they are not offered fertility services or they are otherwise encouraged to terminate the pregnancy or give the baby up for adoption (ibid).

Hampton and others (2022; Hampton et al., 2023) found that autistic people can experience difficulty getting health care that meets their needs during pregnancy and after giving birth. They also report (Hampton et al, 2023) that autistic people were more likely to have an elective caesarean and more likely to have induced labour than non-autistic people (Hampton et al., 2023). Hampton and others (2022) when seeking participants reported difficulty finding pregnant women who knew they were autistic and self-identified as such, and in finding assessed autistic and pregnant women. As women are generally under-assessed for neurodivergence, it is challenging for researchers to find participants with these two criteria (ibid). These researchers asked autistic and non-autistic people to fill in questionnaires measuring stress, depression, anxiety and satisfaction with life, once during pregnancy, once 2 to 3 months after giving birth and once 6 months after giving birth (Hampton, 2022). For both groups, scores for anxiety went down over time. There were no differences between the groups on satisfaction with their life or how confident they were as a parent, and no differences on most areas of parenting style, although autistic parents scored lower on parenting discipline. The autistic parents had higher stress, depression and anxiety scores than the non-autistic parents, and autistic people may be more stressed, depressed and anxious than non-autistic people during pregnancy and after giving birth (Hampton, 2022). Autistic people therefore need good quality support during this time. This study (ibid) also suggests that autistic and non-autistic parents may be just as likely to parent in positive ways such as being sensitive to their baby’s needs, and this research is obviously important for reducing stereotypes about empathetic failings autistic parents may be perceived to have. The paper recognised that autistic experiences of the perinatal period, the period of time when a person becomes pregnant and up to a year after giving birth, is not well known. Hampton and others (2022) suggest that autistic people may be at increased risk of lower perinatal well-being, given that a prior history of mental health conditions is a risk factor for poorer perinatal mental health, and that autistic groups report higher rates of mental health challenges than neurotypical groups. Autistic people may also face increased risk due to challenges such as heightened sensory sensitivities during pregnancy, which could relate to both increased sensitivity to the physical and biological changes associated with pregnancy, and to the environment (ibid). Both could make it more difficult to access appropriate maternity care, for example, due to the sensory environment of health care facilities, and difficulties with touch during appointments and birth (ibid). Social and communication barriers to maternity care have also been identified for autistic people, including difficulty conveying needs and understanding information given during childbirth, being less likely than non-autistic people to feel that the process of birth was explained to them, and feeling judged by maternity care professionals. Such negative experiences could all increase the risk of poorer perinatal well-being. UK survey data from 2015 (Hampton et al., 2023) reported that people with physical and mental health 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 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. They 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 or possible mood changes after birth (Hampton et al., 2023). Studies examined by Hampton and others (2023) on exploring access to healthcare for autistic people have identified sensory-related barriers to healthcare (such as difficulties with the sensory environment of healthcare facilities, as well as communication barriers such as difficulty processing verbal information and a need for more accessible communication formats such as written information (Hampton et al., 2023). In addition, professionals across a variety of areas of healthcare report that they lack adequate knowledge and training about autism in adults. Studies focusing specifically on autistic experiences of maternity care have tended to echo these findings of sensory and communication barriers to appropriate healthcare (Hampton et al., 2023). 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. 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 (ibid). Another study retrospectively explored the perinatal experiences of eight autistic women. 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 positive autism assessment 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 further study (Hampton et al., 2023) 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. 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 (ibid). Approximately a third of autistic participants reported having a meltdown or shutdown during the birth. Autism.org describes a meltdown as “involuntary responses to a nervous system overload. They are the physical manifestation of neurobiological chaos caused by a perceived threat to life. Meltdowns are not behavioural responses and generally aren’t used to attain a specific outcome. The reaction is involuntary and cannot be controlled as intense emotions take over, and tension build-up is released via stimming, repetitive movements, zoning out, screaming, crying, stomping, etc. Once individuals have reached that state, they cannot usually respond to standard behavioural calming cues or techniques. Recovery time for meltdowns can last up to 20 minutes or more after removing the stressor” (Autism.org, 2024b). Meltdowns are not the same as shutdowns. Patty Laushman from Thrive Autism Coaching (2023) describes autistic shutdown as “a state where an autistic person basically withdraws from their environment. A shutdown is often a coping mechanism for overwhelming sensory or emotional stimuli or just plain exhaustion from processing too much stimulation. It indicates a mismatch between what a person needs and the environment they are operating in.” The majority of autistic participants in Hampton and others’ study (2023) 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 (ibid). The opposite may be the case for autistic people (38% of whom reported shutting down vs. 29% who reported a meltdown), a higher percentage compared with non-autistic participants. 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 (ibid).

Research exploring autistic people’s postnatal parenting experiences is scarce. One survey reported by Hampton and others (2022) has explored autistic parenting beyond the postnatal period and found that autistic mothers reported greater difficulties than non-autistic mothers with aspects of parenting such as multitasking and domestic responsibilities. Autistic mothers were also more likely to report not coping, to find motherhood isolating, to feel judged and to feel unable to ask for support. There were no group differences, however, in prioritising their child’s needs above their own and seeking opportunities to boost their child’s confidence. Hampton and others (2022) stress the importance that maternity services are aware that autistic people may be vulnerable to worse perinatal mental health than neurotypical people. The researchers noted that well-being improved postnatally for both groups of parents, perhaps because pregnancy-related worries were alleviated, and concerns about the child’s health were resolved after birth (Hampton, 2022), perhaps because of hormone level changes and following the physical burden of pregnancy. The presence of social and financial support from others (such as a partner, family, friends and a peer support network of other parents) may also be a protective factor against poorer postnatal well-being. Hampton and others (2022) identified that future research could look at the role support networks play for autistic new parents to protect against loneliness, a state identified as particularly associated with autism. The autistic group in this study (Hampton, 2022) were less willing to endorse beliefs such as ‘my baby sometimes does things that are naughty’ and ‘it is never too young to start disciplining a child’. It is important to note that these questions concerned infants below 1 year old and may not reflect parents’ attitude towards providing appropriate discipline with older offspring (ibid). The group difference in discipline may be due to autistic participants taking a more accepting approach towards their infant’s behaviour, rather than judging their behaviour negatively (ibid). A reduced tendency towards conformity among autistic people may enable a more accepting approach towards parenting that is less constrained by dominant ideas of what constitutes acceptable child behaviour. While potentially bringing benefits, Hampton and others (2022) caution that such an approach could also make certain aspects of parenting more challenging as the child grows up.

The concept of parenthood is informed by cultural social norms and expectations (such as gendered role distributions, for example). If autistic people approach parenting in ways that are less constrained by these expectations, this could influence the feelings of being judged and misunderstood by others that autistic mothers report experiencing. Hampton and others (2022) found that autistic mothers may have increased awareness of the challenges they face as a parent due to having received an autism assessment and may therefore attempt to compensate for these challenges to a greater extent than non-autistic mothers. This suggestion was made following the finding that while mental health challenges were identified in the autistic parents, it did not follow that they also experienced less parenting confidence (ibid). Essentially, it might be that as autistic mothers are aware their mental health will be challenged by becoming parents, they put more effort into making sure their child is nurtured. Autistic participants (Hampton et al, 2023) 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, given that autistic people can feel judged by healthcare professionals (ibid). 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 (ibid). Hampton and others (2023) reported that some participants may not have received adjustments due to not having received a positive assessment for autism or not having disclosed their neurodivergence to staff. Indeed, participants tended not to disclose about being autistic during postnatal appointments, echoing prior findings that autistic mothers can be reluctant to do so. Participants may have chosen not to disclose for fear of negative attitudes from professionals. 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 (ibid).

Grant and others (2022) found that several aspects of breastfeeding may be more challenging for autistic women. Breastfeeding is a highly embodied and sensory experience, requiring significant work on the part of mothers (ibid). Processing sensations has been highlighted as one of the main challenges for autistic mothers, increasing the risk of breastfeeding aversion. Based on the experiences of over 300 autistic mothers, Grant and others (2022) identified the inaccessibility of infant feeding support services, challenges associated with the transition to motherhood, and specific challenges linked to infant feeding. Although some of these issues are common experiences of many mothers navigating maternity care and infant feeding, these findings (ibid) suggest that these issues are likely to be exacerbated for autistic mothers. Furthermore, specific challenges related to autism were also identified, including changes in routines, loss of control, sensory processing, interoception (the sensing of internal signs from the body) and pain experiences (ibid). Grant and others (2022) found that there is an urgent need for health services to be better informed and organised to accommodate autistic mothers and for health professionals to understand autistic differences, including sensory processing challenges, different pain presentations, communication differences and different help-seeking presentations to neurotypical women.

The overall number of pregnancy-related deaths in the United States is 16.9 deaths per 100,000 live births in 2016, which is equivalent to approximately 700 women per year. However, these numbers obscure considerable disparities in the causes of death, which vary not only by the timing related to pregnancy, but also by the race, ethnicity, and disability status of the women (Sigmore et al, 2021.

What does research tell us about ways to support autistic people experiencing sexual health issues, pregnancy, and new parenthood?

For autistic youth experiencing inadequate sexual health education, Holmes (2023) identifies trauma-informed care as both important and modifiable. Autistic people experience a disproportionate burden of traumatic experiences, including sexual abuse and assault (ibid). Trauma-informed care means that providers know that many people have experienced trauma (i.e., distressing events that overwhelm one’s ability to cope), are sensitive to the signs of trauma, are responsive to the needs of youth who have experienced trauma, work to develop a trusting relationship with youth, and actively work to avoid retraumatising survivors by, for example, providing a greater degree of control over what happens to youth in the setting in which they are situated (ibid). The accommodations discussed by autistic participants in Holmes’ study (2023) align with healthcare accommodation needs identified by other groups with disabilities: environmental accommodations (e.g., being allowed to wait for the appointment in a private room away from the waiting area), administrative accommodations (e.g., written notes provided after the appointment, and allowing a supporter to attend appointments), communication accommodations (e.g., willingness to converse with people who use augmentative or alternative communication devices, and explaining ideas in a way that the individual can understand) and having disability and accommodation needs recorded in their medical record, indicating that changes in these areas would benefit many more patients beyond autistic people (ibid).

Hampton and others (2022) suggest that autistic people may be vulnerable to higher perinatal stress, depression and anxiety than non-autistic people and perinatal healthcare professionals should be aware of this increased vulnerability. Their findings highlight the need for effective screening and support surrounding perinatal well-being for autistic people. It is likely that different levels of support are required for different individuals and professionals should provide personalised support according to the challenges the individual is facing. The tentative finding of an improvement in well-being from pregnancy to the post-natal period may indicate that, for both autistic and non-autistic people, pregnancy may be a period of increased need for support. Some autistic parents may benefit from support to improve their parenting confidence. However, professionals working with autistic parents should be aware that autistic people report being no less likely to engage in positive parenting behaviours such as providing nurturance, involvement and routine (Hampton et al, 2022).

Hampton and others (2023) found that 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 (ibid). 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, and indicates that autistic people would benefit from greater information surrounding postnatal recovery (ibid). 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 (ibid). 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, as well as findings that those with disabilities are less likely to be spoken to in a way they could understand during childbirth (ibid). 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. It should be noted, how-ever, that these accommodations may be less feasible during certain aspects of labour, such as the final stages (ibid). Having an advocate present during childbirth may be particularly important for autistic people given issues of communication (Hampton et al, 2023) and the possibility that shutting down during childbirth may make communication additionally challenging. As one might expect, the majority of autistic participants felt favourably about having an advocate present during the birth (as well as during post-natal appointments) (ibid). 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 possible difficulties processing verbal information – as every autistic person is different, some may need this support more than others(ibid). This need to make communication adjustments for autistic patients fits with prior findings that autistic people experience communication related barriers to healthcare, including maternity care (ibid).

Adjustments to breastfeeding support may also be beneficial for autistic people. The autistic participants in Hampton and others’ study (2023) were no less likely to breastfeed than non-autistic people (in fact they were slightly more likely to breastfeed), though unlike prior findings, 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 (ibid). Grant and others (2022) from their research make these suggestions for supporting breastfeeding autistic women: Communication should be clear, direct and specific and ideally followed up with written information; Mothers should not be touched (for example, when demonstrating breastfeeding attachment) without explicit consent; Staff should receive training and tools related to autism, but this also needs to be specific to infant feeding and able to be tailored to each autistic mothers’ individual needs; Autistic mothers should have a named provider of maternity and infant feeding support to avoid needing to repeat their needs to new members of staff; Guidance on communication and sensory needs to be included in maternity notes for all mothers (‘handheld notes’ in the United Kingdom) and child health records (‘the red book’ in the United Kingdom), which would also lower the burden on autistic mothers required to regularly reassert their needs. These recommendations (ibid), while focused on the needs of autistic women, will improve maternity and infant feeding services more widely, with many accessibility measures benefitting all. This is important because of the presence of unassessed women at the time of birth, stigmatisation and fear associated with disclosing an autism assessment (Radev, Freeth and Thompson, 2023) which may lead to lack of disclosure from autistic women to healthcare services, and healthcare providers’ lack of linked information systems across departments. Grant and others (2022) proposed service improvement in general, rather than setting up bespoke separate services. Dr Aimee Grant (2022) in her research “Breaking Barriers” describes “real barriers within maternity services in terms of health professionals who didn’t understand autism, whose communication wasn’t very clear” (pp. 1-2). As a medical professional who received a late assessment for autism, she was in a unique position to see services from the point of view of an autistic mother and as a medical service provider. She writes, “autistic people are quite clear and direct with communication, which is sometimes mistakenly interpreted as rude…But other factors suggested they weren’t being believed by the health professionals when they reported their experiences of things. That could include all the way up until birth: one participant talked about how the staff didn’t believe that she was about to deliver – even though she was – because they didn’t understand her presentation of pain” (Grant, 2022, pp. 1-2). Grant (2022) writes that health professionals don’t have good training about autism – and the training they do have is sometimes based on quite outdated beliefs, which can make it hard for staff to believe that the ‘normal-looking’ person in front of them is autistic. Smaller measures could also improve autistic women’s experience of care. “Communication should always be clear and direct,” writes Aimee (2022, pp.2). “And if, for example, you’ve demonstrated a particular breastfeeding hold, that should be followed up with some written advice, or even a link to videos on YouTube or the NHS Trust website that the mother can go back and look at again” (Grant, 2022, pp. 2-3). Grant (ibid) makes many suggestions for healthcare professionals supporting autistic people, one which is particularly important, that autistic people often ‘mask’ their traits in healthcare settings (Radev, Freeth and Thompson, 2023). This means ignoring the difficult sensory environment around them and trying to behave and communicate in a neurotypical way to gain acceptance from staff. Masking is very energy-intensive and is associated with shutdowns and meltdowns in the short term and depression or self-harm in the long term (Grant, 2022). It’s important for staff in healthcare settings to accept autistic communication styles even if they appear rude, or their questions feel disingenuous (ibid).

Greater risk of postnatal depression and anxiety in autistic participants (Hampton et al, 2023) may in part be due to an increased prevalence of mental health difficulties among autistic people compared with the general population, 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 (ibid).

Robertson (2014) paraphrases research from Joey Sprague and Jeanne Hayes who say that we need to do more research on the ways existing social structural relationships facilitate the self-determination of the privileged, often at the expense of the most vulnerable members of the community. Feminist standpoint theory suggests that an important way to develop this line of research is to build on the standpoints of those who are least empowered in our current relationships. The autistic woman in labour is not a full citizen, regarded as different and improper, a misfit, and their child must be protected from them, the autistic mother is the prosthesis a child must learn to live with (Robertson, 2014). The concept of misfit may help us recognise not just the cultural construction of disability but also the current cultural creation of motherhood and how it impacts upon us (ibid). Motherhood researchers, Lorelei Carpenter and Helena Austin, describe this well: In contrast to the motherhood myth that asserts its own naturalness, we recognise motherhood as a culturally and historically specific set of discursive practices, a lived normativity, shot through with the discourses of child development, psychology, education, religion and spirituality, and medicine (ibid). The present dominant version of this myth can be characterised as a mother who is self-sacrificing, nurturing, selfless. A person who is in an interdependent relationship, is emotional, compassionate, connected to nature, and gives efficient and effective attention to everyday tasks; she is always available to her children and assumes complete responsibility for them; she is unselfish and supportive and her children are always in need of her, in particular when they are young (ibid). This ‘perfect mother’ description allows no room for alternative human experience, for differences in mental processes, and the reality of being a mother outside of normative social expectations. It is harmful to people who have every right to experience their unique sense of sexuality, to become pregnant if they wish, and be a parent, outside of a patriarchal framework. By broadening what it means to be neurodivergent and sexually active, fertile, and a parent, all of society benefits from loosening the restrictive expectations on those groups, as associated social boundaries may become equally questioned and challenged.

Thank you for listening. Join me next episode where I will talk about autism and relationships. I will be posting these episodes every fortnight to allow more time for my own research and college studies. Please review the podcast on the platform you listen from and share it with someone you think might be interested. The research I have used in this episode can be found cited in the show notes, and a full transcript will be available at www.theneurogenderpodcast.com. I am Alexa and this has been The Neurogender podcast.

Show notes:

(Ireland) 24-hour rape crisis helpline: www.drcc.ie/services/helpline / 1800 77 8888

(US) Rape, abuse and incest national network: www.rainn.org

(US) National domestic violence hotline: www.thehotline.org

Google help and support for gender-based violence (international): https://support.google.com/websearch/answer/11180375

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