“It Was All Tied into Being a Disabled Person… It Was Another Reason to Feel Inadequate.” Autistic Women and Birthing People’s Experiences of Baby Loss: An Interpretative Phenomenological Analysis

The “double stress” of the loss of a baby and predictability

The impact of losing a baby and the secondary loss of not knowing “what was going to happen” (Han) was described by participants. For some, pregnancy and birth were new experiences, as was losing their baby. Participants reported feeling “scared” and anxious for different reasons, for example, how long their babies would live, and “not knowing how labour worked” (Adrienne), while navigating a new, medical environment, which “I hadn’t been to” (Han).

Needing information to feel safe

Participants described the strong need to obtain predictability to feel safe, through seeking information to understand what was happening. The “lack of information […] had quite an impact on me […],” which “felt out of control” (Han) and could lead to “shut down,” due to “continually trying to get more information” (Jem). Participants reported “reading lots” and searching for information themselves to relieve the unpredictability and compensate for the absence of information from practitioners. This self-obtained information (e.g., found on the internet) was not always helpful, or heightened their sense of distress and the unpredictability of baby loss.

Conversely, glimmers of helpful interactions with practitioners who provided more information about aspects of the loss experience, which were personalised and attuned to their experiences, were shared. This included practitioners who “drew us a picture of the heart, explained it all, that stuff sticks in my mind, I liked it” (Liz). Such moments were reported as particularly meaningful.

The terror of losing a baby

Actively losing a baby or witnessing a baby die made sense of as being “traumatic” (Adrienne), across the different types of baby loss. Participants described the imprint of trauma and how this has stayed with them.

Participants recalled distressing memories of watching their babies “fight” for their lives after being born and the fear they felt seeing their babies being “resuscitated” and remembering the “breath, the gasping” (Jem). This could lead to further experiences of shutdown, and feeling powerless in not being able to help their babies.

Some participants “remember being really terrified that I was going to die” (Hayley) and that the fear was “like no fear I’ve ever experienced before, absolute terror” (Liz). Trauma was used as a word to make sense of aspects of their experience, with some sharing that they have been “diagnosed with PTSD because of it” (Jem). Some participants described having “blank spaces” (Liz), as their brains “way to kind of protect me” (Bethany).

Heightened autistic sensory experiences during baby loss

A range of heightened sensory sensitivities while losing their babies was reported as an additional layer of stress, for example, the hypersensitivity to the “feeling of blood on me,” during miscarriage, which felt “disgusting” (Bethany) and interoception, with “the taste of metal subsiding rather than increasing” (Hayley). Some participants described the “utter nightmare” of the hospital environment, like “the smells, sounds, lights” (Han), which were “just too much to go through” (Jem). Some described how “autistic and hospitals don’t mix” due to a lack of agency, choice, and a hypersensitivity to the “blue lights in NICU” (Liz).

Moreover, the heightened sensation of pain throughout losing their babies was described as “agony” (Han), “unlike any type of pain” (Bethany), and “a lot worse than I’d ever experienced before” (Hayley). Challenges in receiving pain relief were also reported during their miscarriages, due to practitioners failing to recognise experiences of pain, which may reflect the differences in expression and communication of pain. Furthermore, participants described finding it “hard for me” to express experiences of pain during baby loss “because I’m not someone who is like, “oh, ouch” (Adrienne). This may also reflect the differences in external, observable expressions of pain observable, compared with participant’s internal experience, which could have added to the intensity of these experiences.

“The way they were treating me”: experiencing dehumanising and neglectful care

Participants described their distress in response to the felt absence of care from practitioners throughout baby loss and the impact of these experiences, including the additional context of being autistic. They expressed feeling “neglected by the system, which was hurtful” (Bethany), “in a place where you should be safe” (Hayley), despite “knowing they’d seen my notes” (Jem) while accessing medical care in A&E and wishing to be “treated with a bit more humanity” (Han).

Some participants expressed a sense of pain and sadness at being placed on maternity wards, “which made my heart crush just listening to another woman with a heartbeat of her baby” (Adrienne), which reminded participants that “I didn’t have my baby” (Jem).

In addition, participants described feeling belittled during their experience of baby loss, in relation to differences in sensory experiences, often connected to pain and interoception. This could be triggered by practitioners’ perceptions of pain, for example, “you have a good pain threshold,” despite participants internally experiencing “so much pain” (Adrienne). Similarly, participants reported feeling that their internal sense of their bodies were infantilised, not believed or taken seriously, for example, a nurse doubting whether “you’ve not just wet yourself” (Jem) at the beginning of labor. This also conveyed a sense of internal questioning and having to prove this to others.

The impact of practitioners’ not respecting “my boundaries,” led to feeling “super vulnerable.” This was an additional layer in context of being autistic when “your stress response is to shut down and not be able to speak verbally” (Hayley). Participants reflected on how they may be perceived by others when attempting to communicate experiences of distress.

This appeared to further convey the differences between observable communications of pain and participants’ expressions of pain and interoception, adding to their distress throughout baby loss.

The non-event and silencing of baby loss

The societal and “cultural” silence and “taboo” of baby loss across many layers was named by participants, which is “not talked about enough that it’s a fucking awful experience” (Han). Participants described “seeing the split of people who do a runner” (Liz), or “didn’t know what to say” (Jem), demonstrating the stigma surrounding baby loss. Furthermore, experiences of minimisation and invalidation from family and friends as reported by participants could have failed to recognise both the physical and emotional pain of losing a longed-for baby and future.

Participants also shared the impact of navigating the silencing of baby loss from others, which could become internalised and lead to doubting their loss. Participants talked about “keeping [grief] to myself” (Bethany) and “stopping my feelings, my thoughts” (Adrienne) as examples. Moreover, participants appeared to be hypervigilant to the gaze of others, which could reflect experiences of invalidation and silencing, in turn leading to suppressing and hiding their internal experiences. Some were noted to apologise “if it’s too much” (Adrienne) and were tentative in sharing.

The internalised blame, shame and guilt of baby loss

A profound sense of shame, guilt, and internalised blame for the death of their babies as people AFAB was shared. Participants described blaming themselves “for it all” (Han) and self-criticism for not being able to do the “most innate basic function that my body is designed to do” (Hayley), which could be exacerbated by a context of multiple losses.

The sense of blame and guilt was also made sense of in relation to their autistic identity, which was “another reason to feel inadequate in life and useless again” (Han), with pregnancy initially feeling like “I was doing something right with my life […] I was like everybody else” (Jem) until then losing their babies.

This describes the sense of internalised blame and fault, at the intersection of gender, autism, and baby loss, which may have heightened their distress.

“The best worst club in the world”: safe connections to resist silence

Safe connections with others who had experienced baby loss via online communities could bring relief from the societal stigma and silence that “no one talks about” (Han). Participants described the sense of care in re-enfranchising their babies’ lives through these communities, recognising their babies, for example, marking their birthdays. This evoked a sense of belonging and connection.

The unbearable pain of baby loss

Participants shared subjective experiences of the rawness of grief as they began to navigate and process life without the physical presence of their babies. Grief in the early days was described as an embodied pain and “like an empty vessel, like part of me had died” (Jem).

The rawness of such distress and grief could be intensified by a heightened sense of feeling internal sensations and pain, which some described as feeling as though “it was gonna kill me” (Liz). This may also be connected to the interoceptive and emotional processing differences autistic people can experience, adding a further layer of intensity to their grief. Participants expressed the sadness in different ways, for example, in all the hopes and dreams lost through their babies’ death.

Grief feeling “different” as an autistic person

Participants described their sense of grief feeling “different to others” (Bethany), which added to their grief for their babies. Some participants described a sense of internal conflict between the logical strengths of their neurotype and the painful emotional manifestations of grief, which were unexpected and profound.

Participants described the range of universal emotional experiences, particularly a sense of anger, which could be exacerbated by difficulties in identifying or making sense of internal emotions and physical sensations, as Han described, “I feel dot, dot, dot, as in I don’t know.” Distress and grief could also lead to an increase in autistic experiences, such as meltdowns, sensory and communication differences. While some appreciated connection with others, some spoke about the need to grieve alone, to avoid “talking or getting asked” (Liz), which often felt intentional to mitigate further experiences of stigma, particularly at the intersection of being autistic. Experiences of invalidation and silence may contextualise this further.

The permanence of grief and love in baby loss

Grief for their babies changed over time but was always felt, reflecting the forever physical absence of their babies. Participants described grief for their babies as something they “live with, like in my bag or my pocket” (Hayley), which could fluctuate and be triggered by everyday reminders of being without their babies.

Participants described the sense of “pure sadness which has never left” (Jem), which also had an embodied, physical element to express the continued sense of grief over time.

Finding meaning in baby loss

Participants described the ways in which they made meaning through their experience of baby loss. The experience of loss could lead to a discovery of values, hopes, and dreams and new perspectives about themselves, for example, “because of him we know we are autistic” (Adrienne).

Some participants described attempts to make “some sense” (Jem) from their babies’ deaths, for example, through organ donation, to gift the life their babies did not get to live. However, attempts to make meaning in this way were disrupted, which led to further hurt and sadness.

Others described how the meaning of the death of their babies influenced beliefs of safety and coping as an autistic person attempting to manage the anxiety of navigating a predominantly non-autistic world. Such coping skills were felt to no longer be meaningful or as adaptive as they once were before the experience of baby loss.

The experience of finding meaning in baby loss was varied, with some reporting more helpful and positive experiences, and others more difficult, perhaps adding to their grief.

Remembering and continuing bonds to “show they existed”

While this could be painful, the significance of remembering their babies and finding ways to reconnect and continue bonds to legitimise their lives and participants’ experiences was important. Participants often described physical and tangible ways of honouring, remembering and transforming grief to continue traditions as if their babies were physically alive. Subjective ways of marking their babies’ lives through objects were shared, such as teddy bears and earrings, which conveyed the sense of a forever-felt presence.

Responding to autistic grief

The study highlights the need for practitioners to understand the breadth of autistic grief experiences and to consider ways to resist societal silence to re-legitimise their valid distress, grief, and baby loss through an autism lens. Signposting to peer-support services, such as Sands, and employing peer-support workers in clinical services could be ways to enact this. ³⁴ This could facilitate connection with others who have experienced baby loss to re-enfranchise and de-stigmatise their experiences.

Autistic-informed perinatal care

The findings add to existing research highlighting the need for practitioners to understand the nuanced experiences of autistic people AFAB, including (1) the loss of safety in predictability, (2) sensory experiences, for example, hyper- and hypo-sensitivities to the seven senses, with specific consideration to interoception and pain, and (3) communication and information processing preferences, such as the necessity of clear, sensitive, specific, personalised and continuous communication. Conversations regarding neurodiversity could be facilitated at the point of service-engagement, which should be documented and inform care.

Collaboration and shared-decision making are also crucial within often unpredictable and changeable medical situations. Practitioners could facilitate sufficient space for autistic people AFAB to ask questions, provide clear explanations and honest answers in antenatal contexts ³⁵ and adopt scripts to restore safety in predictability. ²⁵