Helping Autistic parents-to-be plan a caesarean delivery: a guide for perinatal professionals

There is a small body of research into perinatal outcomes, and all have focused on non-Australian populations (Ames et al., 2024; Avdeeva et al., 2025; Hosozawa et al.,2024; Rast et al., 2023; Shea et al., 2024; Sundelin et al., 2018). Findings are mixed when it comes to caesarean section. Neither Shea et al. (2024) nor Hosozawa et al. (2024) report on the occurrence of the procedure. Sundelin et al. (2018), which compared 2,198 births to Autistic women registered in the Swedish National Patient Registry [SNPR] between 2006-2014 with 877,742 women who did not have that diagnosis, found that while Autistic women were not at an increased risk of an emergency caesarean delivery, they were at increased risk for elective caesarean delivery (OR=1.44; 95% CI=1.25–1.66). However, the authors of that paper did not differentiate between elective sections performed for maternal choice and those performed for clinical indication prior to the onset of labour. In Avdeeva et al., (2025), based in Russia, 18 neurodivergent women (including Autistic women) were compared to 21 matched controls. 83.3% (n=15) of the neurodivergent participants had a caesarean section, compared to 23.8% (n=5) in the control group; no distinction is made between emergency and elective caesareans. Additional context is provided for the indications for the procedure; psychiatric recommendations were provided for 10 cases; altered mental status of the patient was the indication for 3 cases; and in 2 cases breech presentation and previous history of caesarean history were noted.

Conversely, Ames et al. (2024) found no difference in the rate of caesareans between Autistic and non-Autistic individuals who were members of Kaiser Permanente in Northern California and Rast et al. (2023) found that the rates of vaginal birth (specifically non-instrumental delivery) were similar between Swedish Autistic persons with and without intellectual disability (76% and 74% respectively). Swedish persons with intellectual disabilities who were not Autistic (74%) and all other Swedish persons (77%).

Overall, the research does not provide a clear or consistent picture. Some studies suggest higher rates of planned caesareans among Autistic people, while others show no difference at all. This makes it difficult to draw firm conclusions and highlights the need for more detailed, inclusive research.

In terms of qualitative research, direct investigation into Autistic experiences of caesarean sections is infrequent. One participant in Talcer et al. (2023) claimed that a caesarean section felt reassuring because it followed a clear, predicable process. In Donovan (2017), about one-third (n=7) of the participants had a caesarean birth, but it was not discussed in much detail. Further, the true incidence of caesarean section in this study is not expanded on as the 24 participants had over 50 children between them. More information is provided in Lewis et al. (2021). 5 of this study’s 19 participants had a caesarean section. Again, the true incidence of caesarean is not provided, but two narratives are shared. In the first, Hallie describes passing out from pain as her anaesthesia wore off once her baby was born. In the second, Roseann described being traumatised and disgusted as she watched the procedure via the mirror light; Roseann’s sensory sensitivities (specifically touch, noise, and temperature) were heightened, which further worsened her experience.

Participants in Rideout (2025) demonstrate a varied perspective on caesarean. Of the 15 participants, just 1 participant planned to have a caesarean; of the 24 singleton pregnancies between them, all but one were intended to be vaginal births. In the end, there were 6 emergency caesareans and the 1 planned elective caesarean. Unlike Talcer et al. (2023), the interviewee, Theresa, who had a planned elective caesarean for maternal choice reported an extreme fear of vaginal birth due to a family history of perineal trauma in labour; these family members further advised against having a vaginal birth. Theresa also had a pragmatic view towards her post-partum recovery. She lived a significant distance from her family and knew that she would have little in-person support aside from her husband if she had similar urogenital injury. In this instance, the caesarean was a self-determined decision to protect her physical and mental health and the calculated risks from the surgery viewed more positively than that of vaginal birth.

However, Theresa found that securing a caesarean to be challenging. She had to pay for a private obstetrician and have a psychologist confirm that a caesarean was medically necessary. Although research was usually reassuring and helped Theresa have a sense of control, she struggled with needing to defend her right to make decisions about her body as an autonomous and capable adult. She similarly found that health care practitioners made assumptions about who she was due wanting a caesarean. Specifically, her midwife did not anticipate Theresa would want to breastfeed. She also suspected that having the caesarean deemed medically necessary by the psychologist triggered some initial visits by nurses from the mental health team once she discharged home.

While the other 14 participants wanted vaginal births, some were relaxed about the possibility of a caesarean. These interviewees noted that they prioritised the well-being of their baby and were happy to do what was necessary to have a live, healthy baby. Others wanted to avoid disappointment by not having a preference for any particular mode of birth. Interestingly, one participant wanted to be put under general anaesthetic if a caesarean was required due to a history of local anaesthetic wearing off too quickly. There is some research that suggests that Autistic people may metabolise medications differently, but children tend to be the focus of such studies (Alfageh et al., 2019; Asahi et al., 2009; Brown et al., 2019; Deb et al., 2021; Hervas et al., 2021; Kaku et al., 2023; Stojanovska et al., 2024). For participants where a caesarean was not their ideal outcome for their first pregnancy, pattern recognition and familiarity with labour and birth helped them feel less conflicted and more in control when they agreed to a repeat caesarean during their second labour. Only one participant reported any surgical complications.

Sarah Hampton’s thesis (2020) has both qualitative and quantitative dimensions. In the qualitative interviews, 10 (48%) out of 24 Autistic participants had a caesarean section compared to 6 (24%) out of 21 non-Autistic participants who had a caesarean. There is no distinction between elective or emergency and commentary about the procedure is limited. Both groups commented that they found it difficult to adjust when birth did not meet initial expectations, with hospital birth and caesarean section being examples. In the survey, Autistic (n=417) and non-Autistic (n=523) respondents reported similar rates of planned or emergency caesareans. 52 (11%) non-Autistics and 42 (11%) autistics had a planned caesarean (aOR=1.12; 95% Cl=0.71-1.76) while 79 (16%) non-autistics and 59 (15%) Autistics had an emergency caesarean (aOR=1.01; 95% Cl=0.68-1.50).

To be brief, there are significant gaps in our knowledge about whether Autism influences the risk of caesarean section and the implications that caesarean sections have on Autistic people in terms of planning their pregnancy and recovery afterwards.

That said, focusing only on caesarean sections is just half the story. The decision to proceed with the procedure can occur pre-labour in the instance there is a borderline or deteriorating clinical picture for either the baby or the pregnant person. While such circumstances can be overwhelming, this does not mean the Autistic parent-to-be is incapable of making an informed decision. While findings are mixed about the actual risk of caesarean for the Autistic population, for some a caesarean can be the culmination of prolonged or painful labour or induction of labour that pushed them into a meltdown or shutdown state. The literature may not address whether there is a direct connection between such a lapse in care and caesarean rates, it is very clear that dismissal of Autistic reports of pain during labour or of direct requests for pain relief are not uncommon occurrences. Further, research participants who report such experiences recall being in a state of shutdown as well as incidents where cervical examinations are performed without consent. In these instances, the provision and attainment of informed decision-making is impaired if not outright impossible.

• Autistic parents have diverse information needs. Offer materials in multiple formats:
  • Easy Read guides
  • Detailed clinical guidelines
  • Visual diaries of the procedure to familiarise with equipment and theatre setup.

• Information to include:
  • Medications used during the procedure
  • Steps of the incision
  • Possible complications during epidural or surgery.

• Recovery planning:
  • Lifting and movement restrictions
  • Medication limitations (e.g., driving restrictions)
  • Household tasks and support services
  • Planning how to leave home with baby
• Discuss Plan B for emergency caesarean situations, so that all involved are prepared for unexpected changes.

• Include a section to document the personal history with medications, from paracetamol to general anaesthetic. Prompts to include:
  • previous dental procedures
  • gynaecological exams
  • skin treatments (e.g. wart removal)
  • previous surgeries.
• This information may not always be in medical records, so having it in the birth plan ensures the team has access.

• Clearly state who is delegated to make decisions and in what situations.

• Consider how and when decisions will occur, especially during unexpected circumstances.
• If support people are also Autistic or otherwise neurodivergent, consider their sensory and communication needs, as these can affect their ability to advocate or follow the birth plan.
• Tip: Reading about partner distress (Miller, 2020) can facilitate dialogue and help spouses/partners/support persons develop their own strategies to reduce their stress and optimise the labour and birth experience for their loved one.

• A caesarean involves unavoidable sensory elements: bright lights, chemical smells, sounds, and the sight of blood/viscera.
• Some parents may experience nausea throughout the procedure, which may be difficult to manage.
• Physical sensations (such as movement during the procedure, pain or shaking) may occur and may be difficult to manage.
• Inform the parent that general anaesthetic can be administered at any point if sensory elements become too difficult or if that is the preference.
• Include in the birth plan:
  • Preferences for managing bright lights or strong smells
  • Preference for a drape or visual cover during the procedure
  • Any support or coping strategies for sensory sensitivities.

• Preference for immediate or early skin-to-skin contact with baby.
• For some babies, this will not be an option but inform parents that pictures can be taken throughout the procedure so they do not miss anything.
• Immediate skin-to-skin occurs right after delivery while the placenta is being removed and the incision sutured.
• Some parents may prefer a support person provide the immediate skin-to-skin instead; reassure that this is equally valid.
• Discuss any physical or sensory limitations that may make immediate skin-to-skin overwhelming.

• Decide whether being introduced to the surgical team before the caesarean commences is important.

• Options could include:
  • A pre-procedure “timeout” where each staff member introduces themselves and their role
  • A modifiable board with staff pictures in the theatre (where privacy permits).

• The team should clearly communicate throughout the procedure. This will include communication about what is happening with the baby.
• If the parent chooses to go under general anaesthetic, there should be plans made so that they know what will happen to them and their baby when they are unconscious.
• Make a plan for who will check with the parent after undergoing the procedure. This can be discussed prior so that it is clear who will stay with the patient and who will stay with the baby. Reassure the parent that it is OK for the support person to stay with them.
• The support person can help the parent go through the materials and information, if needed.

• The caesarean plan will vary by hospital/unit, so consult midwives or obstetricians about what can be accommodated while maintaining safety and sterility.
• Consider pre-procedure protocols, such as staff introductions without masks, to reduce anxiety.
• Include sensory needs and preferred coping strategies in the plan so staff are aware.

• Catheter removal – This procedure may be distressing.
• Pain management – Stay on top of the patient's pain medications as it becomes increasingly difficult to advocate for oneself when in pain. It should not be left up to patients recovering from major surgery to remind hospital staff of when their pain medications are due.
• Shoulder pain – Shoulder pain can often be resistant to pain management. Offer peppermint oil and a heat pack early and recommend movement. Reassure the patient that it is temporary. Explaining that the pain is caused by trapped air can help to relieve anxiety of the patient.
• Wound care – This often involves a midwife removing gauze and touching the site. Discuss with the patient and find out how they would like to approach wound care.
• Morphine itch – Morphine itch is very uncomfortable, but temporary, antihistamines may help.

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