This is the second in a series of blogs looking at the experiences of pregnancy for autists, the first of which focused on the process of becoming pregnant and how autists may experience struggles that are different and/or more intense than allistic folks due to the differences in their neurotype. This blog is going to focus specifically on the differences for pregnant autists as compared to allistic pregnant people.
As we know from both the research and autistic communities, many folks (especially those assigned female at birth) don't receive an accurate autism diagnosis prior to adulthood, which means that they are likely heading into a dramatic shift in life without the knowledge and support that they deserve. Additionally, it's unlikely that birthing professionals have had education on working with neurodivergent people. This can lead to misunderstandings, and worse still, physical and mental health inequities that affect both the birthing person and their fetus.
It is well documented at this point that autists experience the world (both externally and internally) in ways that are different from allistic people. Autists can be either hyper- or hypo-sensitive to sensory stimuli (for one or many sensations), meaning that stimuli like lights, sounds, smells, tastes, body sensations, and personal space (among others) can impact them in ways that can seem unexpected. Things that are considered to be normal during a typical doctor's visit can cause excessive mental strain and feel unbearable:
Florescent lighting, cold room temperature, being touched - sensory stimuli can be overwhelming.
Differences in communication preferences can lead to misunderstandings and stress.
Being in an unfamiliar environment and without the necessary understanding of social scripts to effectively predict what is going to happen.
It's normal during pregnancy for sensitivity to smells and tastes to increase, so for autists who are already hyper-sensitive, this can increase to a level that becomes problematic, such as avoidant-restrictive food intake disorder (ARFID).
Confusion and Feelings of Loss of Control
A common struggle among autists is in feeling different from what is perceived to be "normal". Many autists have histories of perceived and actual rejection, which leads many to feel as if they cannot trust themselves. Pregnancy leads to bodily sensations and experiences that are outside of the norm, especially in terms of one's relationship to the body. Experiencing the changes can be anxiety provoking, and in combination with a lack of trust in self, can lead to heightened feelings of health anxiety, distress, and need for support.
There is also research exploring the likelihood of pregnant autists, because of their increased risk of experiencing a variety of health diagnoses and issues, are also more likely to experience pregnancy-related health issues, such as:
higher rates of hyperemesis gravidarum, which is debilitating, all-day nausea and vomiting, leading to the need for medical intervention
higher rates of pregnancy-related pain and discomfort, such as pain in the hips and ligaments of the pelvis due to connective tissue disorders
taste and smell aversion that interferes with daily functioning, such as the inability to brush teeth and/or be in public spaces where people may be eating/wearing perfume
There's also some preliminary research on pregnancy among people with developmental/intellectual disability (including autism) showing higher rates of pregnancy loss and fetal demise, pre-eclampsia, preterm birth, caesarian birth, and birth complications leading to increased time recovering in hospital.
When these kinds of things are going on, especially in addition to the growing changes within the body of the pregnant person, regular doctor's visits can become so stressful that autists can experience meltdowns and shutdowns. This can lead to misunderstanding information important to their health and care, an inability to ask questions of medical professionals, increased recovery time after appointments, and possibly avoidance of future appointments. Research supports the idea that many autistic adults feel unsatisfied with their medical care. This can appear as non-compliance and even lead to dismissal from practice by the pregnant person's medical provider.
Comparison and Isolation
Even though many folks experience difficult pregnancies, it's uncommon for people to share the details and degree of difficulty related to their pregnancies. Even in the media, difficult pregnancies are portrayed with humor (often at the birthing person's expense) or with the most dramatic and horrific outcomes, neither of which are useful for the majority of newly pregnant people. Autists often already struggle in feeling different, broken, and wrong, so when they are experiencing a pregnancy that doesn't fit the idea of what is "normal," it can lead to increases in feelings of not being normal. It's normal for folks to question themselves and their perception, sometimes wondering:
Am I being dramatic?
Am I missing something or doing something wrong?
Am I not supposed to be pregnant? Do I not deserve this?
Am I all alone in this?
It can also feel extremely lonely to feel like the only one struggling, even with supportive people doing their best.
Simply put, pregnancy, even when planned for and wanted, can be traumatic.
If you are an autistic pregnant person and you're finding yourself relating to some of these struggles, you deserve support that is actually supportive. Feel free to reach out and there are also some resources that might be helpful for you through Postpartum Support International, including web-based support groups. You don't have to struggle alone.
If you are a provider and you would like to learn more about how you can provide a neurodiversity-affirming experience for your patients/clients, please reach out.