Stories of Competence,Challenges,and Coping: The Experiences of Australian Autistic People During Pregnancy and Early Parenthood

Subtheme 1.1: I am competent

Participants reported feeling a sense of purpose and positivity during their pregnancies, enjoying their body changes and feeling “proud and good…and more beautiful” (Kate) than in their nonpregnant state.

Pregnancy fostered body positivity and a heightened awareness of positive body image, contrasting sharply with prior experiences of “awkwardness and body dissatisfaction” (Cameron) when not pregnant. Avery described these feelings of body positivity when reflecting on the time spent carrying her children:

The positive body image also led to feelings of empowerment that were in sharp contrast to prior experiences, with participants frequently contrasting their pregnant selves with their nonpregnant identities. Avery described how “I have an incredibly busy mind and labour is one of those few experiences in life which is truly all encompassing where you can just be and just do what you need to do to cope with the challenges.” Nic talked about how pregnancy felt easy:

Many participants reflected positively on their pregnancy, feeling “proud of my contribution” (Avery), “happy because I wanted to have a baby” (Bailey), and “hugely grateful” (Avery) for the experience. Bella shared how her pride and happiest moments came from “sharing that with [my partner]” and how that strengthened their connection and bond.

Subtheme 1.2: Social validation

Participants spoke of how their pregnancy heralded a period of positive regard and attention from their community, family, and colleagues. Nic said “I got a lot of accommodations from everyone when I was pregnant without having to justify it…without anybody questioning it.” She described: “People were all of a sudden, very caring… And all of a sudden, people did notice me. And I think that was nice as well for a change.”

Other participants also articulated the contrast between their prepregnancy and pregnancy experiences with others clearly, like Finley: “I felt like a queen bringing my baby home…I felt like I won a trophy. I got hosted and treated specially by my husband and community people. This had never happened before.” For some participants, this increased social validation was viewed as somewhat of a “double edged sword,” with the increased attention being accompanied by overwhelm and discomfort at times. Bella described this dichotomy:

Subtheme 2.1: Research helped me cope

All participants reported periods of hyperfocus. Harper jokingly described how she “was pretty focused, hyperfocused on the birth thing. But my partner, he seems concerned that he would call hyperfocus an understatement, I was so…I suppose, really, it was a full-time job for me.” This engagement in “huge amounts of research” (Avery) made them feel more prepared and helped them feel like they were doing everything right, as Kimmi explained: “I also did lots of research before so I knew exactly what I might expect so nothing was something I didn’t know they did.” Our participants enjoyed this process of researching because they “wanted to know absolutely everything about what it could be like and what could go wrong” (Avery). Quinn also talked about the benefits of researching:

Participants were “planners” (Alex) and were able to take advantage of their ability to hyperfocus and research at times when they had difficulty posing questions or expressing concerns to health care workers. As Quinn described earlier, the research helped her feel more in control. However, she also reported feeling like she “ended up having to hunt for my own resources and stuff because I didn’t really feel comfortable asking questions and because they did not listen to me.” Another example was Dakota, who experienced a high-risk pregnancy that required frequent monitoring by medical technicians, some of whom provided limited communication regarding procedures being performed or the status of her babies. She described how researching gave her a sense of control and confidence:

Subtheme 2.2: Research overwhelmed me

While hyperfocus was a coping mechanism that gave participants a sense of control, it also led to overwhelming and exhausting experiences. Riley discussed how the constant need to research, absorb, and analyze information became exhausting and contributed to feelings of burnout. This intense focus, while initially beneficial, sometimes drove participants “mad,” (Avery) as they struggled to balance their all-consuming interest in pregnancy with the demands of daily life:

Subtheme 3.1: Social drain

Participants stated that the emotional burden and “the social drain of having to meet a fresh new person every time from scratch made the appointments much more difficult” (Avery), which they attributed to the unpredictability of care, often receiving care from different midwifes, nurses, or doctors throughout pregnancy. Participants often recounted how “when you go to the hospital it’s like no one’s read your file. And that happened a lot,” (Alex). The anxiety related to this was extreme for some. Bailey said, “I hated going to midwife appointments. I never saw the same midwife twice; there was a different one each time. I would be so anxious not knowing who I was going to see.”

Avery’s experience was similar: “I found having to meet a new person each time very stressful especially having to go through history and answer the same questions every time.” While some participants understood that this was just how the system worked, it still resulted in disabling social drain, which was challenging to manage while pregnant or in early parenthood. Without consistent care and the resulting anxiety from the appointments, participants reported feeling that they “didn’t know what was happening a lot of the time” (Bailey). It also meant that disclosure was not beneficial or unlikely to result in meaningful support: “I don’t feel like they would really respond. They wouldn’t care, but it just doesn’t feel like it would make a difference somehow” (Dakota).

Subtheme 3.2: Communication overwhelm

A key contributor to negative experiences in the health care system was communication challenges with health care workers. Communication was described as a “barrier” (Skyler), and the ability to express themselves was compounded by sensory overload, stress, and anxiety. Many participants noted that appointments felt “quite rushed” (Dakota), and they often had to advocate assertively for their individual needs, which felt overwhelming. Bella mentioned that she didn’t want to “be too much of a pain,” a sentiment many participants attributed to societal pressures, particularly for Autistic women, to avoid being perceived as demanding. Participants were generally not confident in voicing their needs, which was summed up by Alex:

For many, the challenge of communication went beyond expressing needs—it was also the extensive mental preparation required before each appointment which for many involved scripting responses (e.g., mentally rehearsing or preparing written notes around what to say in advance), researching topics, managing anxiety, and preparing to mask autistic traits. Avery noted that these appointments felt like an extra “thing on” her already full plate, often leaving her too drained to function afterwards. Some participants relied on partners or family members to communicate on their behalf, with mixed results. Alex shared:

Issues such as “brain fog” (Avery), situational mutism, and challenges in “being able to articulate” (Riley) their concerns caused “the most anxiety” (Riley), making it harder to communicate. Participants often struggled to keep up with the pace of appointments, and redirecting conversations to focus on their priorities was an added challenge. They also reported pressure to be “super polite” (Alex) and mask their true feelings—“I’m very good at masking, 39 years of masking, I’m good at it” (Chelsea). The need to quickly process medical terminology and come up with questions on the spot added another layer of difficulty. As Finley described during labor, “I had difficulties understanding labor terms like pushing. The midwife and the doctors helped me, but it was difficult.” Participants reported that interactions became more manageable when they had time to process information and prepare, particularly when health care professionals communicated “clearly and calmly without social fluff and over the top emotions” (Sage).

Subtheme 3.3: “It kind of eroded my trust gradually.”

Unsurprisingly, health care that was not aligned with participants’ needs during a vulnerable time like pregnancy contributed to increased experiences of distress and burnout. Participants expressed frustration over health care workers who “did not trust my own experience of my own body…and just thinking I was being dramatic or whingey” (Avery) or doctors who “completely dismissed my disability needs and expressed fears” (Sage). Chelsea described seeing various doctors who were “very dismissive and went, ‘You can talk, you’re fine.’ So they would actually send me home.” Being dismissed or not taken seriously heightened participants’ frustration and often distress. Over time, these interactions contributed to participants’ experiences of trauma, as they felt invalidated or ignored in their health care interactions, which “kind of eroded my trust gradually because I didn’t believe everything” (Alex). Avery described how her lactation consultant ignored her attempts to communicate:

Alex described how, despite creating “a very clear plan of what I could and could not cope with,” and communicating that multiple times to allied health professionals involved in their care, they ultimately consented to an examination that directly contradicted the boundaries they had previously established. Reflecting on this experience, Alex stated, “Because I had said, ‘No,’ so many times. But over, I guess, a few weeks of saying, ‘No,’ eventually I had a midwife that didn’t listen, and so it was hard to say, ‘No,’ again.”

Subtheme 4.1: Avoiding invasive testing and interventions

Subtheme 4.1 described how participants minimized their exposure to invasive testing or often held an “anti-interventionist” perspective (Riley). Avery described feeling frustrated by doctors who “kept asking us if we wanted further invasive testing despite research not indicating there was any reason to based on our baby’s condition.” She “wanted to do whatever was within my power… .which meant avoiding a lot of interventions.” Bailey’s experience was similar. She shared that she “didn’t want to be cut open and didn’t want an epidural” because she did not want excessive touch and many wanted to reduce the interventions.

Avoiding invasive procedures, or procedures in general, helped participants manage sensory sensitivities and reinforced their sense of control during an already physically and emotionally challenging time. Bella, for instance, shared her own sensory sensitivities: “I was a bit touch sensitive, particularly with strangers,” which made the “blood tests, and the measuring, and poking and prodding” during appointments overwhelming and heightened her anxiety.

Subtheme 4.2: “I’m a planner”

All participants valued clear plans: “I’m a planner, so everything is known when it can be” (Alex). Participants stated that having a “plan of preferences” (Avery) and “birth plan was a must cos with my autism I need to know exactly what’s going to happen” (Harper). For the participants in this study, the traditional “birth plan,” which happens around 8 months and is a short conversation at one appointment, was insufficient. Riley described this by saying:

For participants, planning meant being “prepared for what to expect for things that they couldn’t change” (Bella). Many participants appreciated receiving “one-on-one sessions” (Bailey) or “pictures of the room” (Bella) and speaking to professionals like the anesthetist beforehand to “explain the procedure, and then I also wanted to see her in person because sometimes I struggle to take in everything” (Alex). They also valued extra time spent “explaining things in a little more detail” (Bella), particularly regarding surgical procedures, medications, and who would be in the room for different appointments. “We also had stuff in the birth plans that was all about me anticipating what my sensory and social needs would be in a difficult situation” (Avery). Finally, planning also meant requesting accommodations, such as “low lighting and I didn’t want anyone to talk to me…or be touched by anyone except partner and birth support unless medically necessary” (Avery) and keeping “the minimum number of people needed in the room… knocking before you walked in” (Bella).