On Being Pregnant And Autistic
A raw account of my pregnancy as an autistic woman.
Courtesy Of Author I love my daughter. My love for her is more profound than the ocean demands self-sacrifice. I was 25 when I first got pregnant and had no idea I was autistic. It wasn’t until two years later that I realized I was on the spectrum, and it finally made sense why pregnancy felt like an invasive hell.
I knew pregnancy would be a challenging experience for me, as I hate changes to my environment and am sensitive to excessive sounds, sights, and smells. You’re considerably more susceptible to sensory stimuli, and I couldn’t quite imagine being more sensitive than I already was, but it was far more intense than I could’ve imagined
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Photo: Author with daughter/Shamiha Patel
There is an overwhelming amount of information available for parents with autistic kids, but there is very little information or support for Autistic pregnant women. It was clear as day that I was autistic whilst pregnant, as I was masking significantly less. However, none of the health professionals, including mental health professionals, noticed that I was experiencing pregnancy in a non-neurotypical way.
Once I discovered that I was autistic, I was disgusted and disappointed to find out that there is virtually no support for autistic pregnant women, even though we face significantly more challenges whilst pregnant.
Autistic women report poor maternity experiences. Many on the Autism spectrum choose not to reveal their diagnosis to health professionals out of fear of being judged or, worse, having their child taken away. According to research, 80% of autistic women are not diagnosed by the time they turn 18 as they may ‘mask’ their needs during childhood and adulthood. As a result, many in pregnancy may not have a diagnosis or support, leading to health inequalities that affect physical and psychological well-being.
I researched multiple platforms for accounts of autistic pregnancies but was disheartened that this experience isn't documented enough. I hope that sharing my experience will increase awareness of the challenges we face in pregnancy, and other people on the Autism spectrum will be able to relate to my experiences.
Discovering I Was Pregnant
It was hard to believe I was pregnant, as I have Polycystic Ovary Syndrome (PCOS) and was always told it would be difficult to conceive. Interestingly, research indicates that there's an association between PCOS and autism. The study found that autistic women in the UK have an almost two-fold increase in the risk for PCOS.
At the height of the pandemic in 2020, I took a pregnancy test and left it on my bathroom countertop. I was expecting to see the one line I usually see, but to my surprise, I saw two precise lines. I was in shock and became overwhelmed with emotion, crying, running down the stairs, unable to say a word, but waving around the pregnancy test in front of my husband. I was wailing so much that my husband was scared I didn’t want to have the baby.
After a few minutes, I grounded myself by stimming (excessively cracking my joints and pacing around the room) and told him I wanted this baby and was frightened of how difficult this pregnancy would be for me. As someone with multiple chronic illnesses, undiagnosed ADHD, and Autism, I was scared of how my life would change.
The First Trimester
Photo: Yuris Alhumaydy/Unsplash
This was a strenuous time. I experienced nausea and sickness all day, every day, for twelve weeks. Since I was a little kid, being sick felt like the worst possible illness I could ever endure, and I would rather be in excruciating pain than allow myself to vomit. I hated the sensation of being sick, so as a coping mechanism, I learned to swallow my sick rather than be sick like a ‘normal’ person.
Research indicates that people with hyperaesthesia — increased physical sensitivity to the skin — within the autism spectrum are reluctant to induce vomiting. So, when I got pregnant, I would try to breathe through nausea so it could feel like I had some control over my body, but of course, more times than not, I had no choice but to be sick.
I was overcome by prenatal depression and crippling anxiety because my pregnancy and COVID lockdown dissembled my routine. I would spend my days hiding in bed, barely able to function, crying all the time, eating one piece of toast a day, unable to communicate with anyone, and overwhelmed by the various changes to my body. I was experiencing an autistic shutdown. I hated my husband and blamed him for getting me pregnant.
As much as I wanted this baby, I couldn’t believe what I was going through to grow a child. Research shows autistic women are more likely to experience anxiety and depression during pregnancy, again indicating that autistic women need access to better care when pregnant.
During the first trimester, I experienced the following symptoms:
- Nausea 24/7
- My breasts felt like they’d been exchanged for rocks
- Weight loss
- I became a vegetarian for twelve weeks as even the thought of meat would make me want to puke violently
- Loathing my husband and becoming filled with rage and irritability whenever I saw him
- I was overwhelmed with fear that I would lose my baby
- Losing connection with my faith and struggling to pray
- Complete withdrawal from sex
- Crying all the time
- I took pregnancy tests every day to make sure I was still pregnant
- Only being able to wear the same pajamas every day as everything else was causing me irritation
- No energy for social interaction and hated people more than usual
- Brain fog and the inability to mask. I couldn’t function, so I hid from the world in bed
- I was in a constant state of Autistic shutdown
The Second Trimester
Photo: Author during second trimester/Shamiha Patel
In the second trimester, I started to feel significantly less nauseous, meaning I had the energy to focus on all my other bodily changes. I quickly became aware of how my body was changing, how my body felt different in different places, and how everything tasted and smelled different. I researched night and day about upcoming pregnancy changes, the fetus, how to parent, and how to keep a baby alive once they’re born. I also did extensive research on birth and delivery options and what to expect postpartum. My pregnancy and unborn child became a special interest, and because of this, I became prepared to become a mother.
I needed to research the worst-case and best-case scenarios because I hate surprises.
During the first trimester, I experienced the following symptoms:
- Feeling very, very stressed and overwhelmed every day. I was experiencing fewer shutdowns and more meltdowns
- Feeling protective of my baby
- Loved my husband again — yay!
- Noticing the slightest changes in my skin and hair would make me feel uncomfortable
- A significant increase in back and leg pain (FYI, I have scoliosis and club feet, so I have chronic pain anyway).
- Gastrointestinal problems
- Feeling like my nose was stuffed no matter how much I cleaned it
- Needing to eat every two hours and feeling overwhelmed by hunger meltdowns when my cravings aren’t satisfied
- Feeling exhausted
- Feeling insecure and depressed that I had put on so much weight that I didn’t recognize myself anymore
- Feeling irritated by people and not wanting to see anyone
- Struggling with social interaction
The Third Trimester
Photo: Kinga Howard/Unsplash
During the third trimester, I was uncomfortable, exhausted, and overwhelmed. The only thing keeping me going was feeling my baby move, reminding me why I was putting myself through pregnancy. Looking back, I was frequently stimming to soothe myself to get through it. I felt overwhelmed and wasn't coping with the pregnancy well — I was in agony, uncomfortable, and deeply anxious, and it felt like I was in a constant state of autistic burnout.
During the third trimester, I experienced the following symptoms:
- Anxiety
- Nausea
- Nosebleeds
- Stretch marks everywhere
- Feeling very low with suicidal thoughts
- Sciatica
- Swollen body
- Insomnia
- Worrying all the time
- Unable to cope with daily smells; having to tell my husband to shower constantly before he came near me
- Irritation around my body by certain underwear or clothes
- Not wanting to see people, avoiding eye contact. Having no energy to work or see people
- Feeling anxious about attending various hospital appointments and struggling with the invasive nature of the tests
Giving Birth
I gave birth via a planned C-section for many reasons. First, I felt this was the safest way to deliver my baby as I have a weak back due to scoliosis. I also had brain surgery a few years before, and I didn’t want to put too much strain on myself for fear of making things worse. Thirdly, not knowing when I would give birth, trying for a natural delivery, and then being rushed for an emergency C-section felt like the worst possible option.
It didn’t matter if I gave birth in a birthing suite or an operating room, as the hospital setting triggers sensory overload for me: I quickly become overwhelmed and irritated by noise, routine checks, bright lights, and the constant interaction with doctors and nurses. I experienced an intense emotional meltdown when I gave birth, and I switched between wailing and mute for up to an hour after I delivered. I couldn’t cope with the rush of emotions and hormones of giving birth to my daughter, and looking up at bright lights didn't help.
My planned C-section was a positive and calming experience, and I am so grateful to the surgeons, midwives, and nurses who cared for my baby and me during that time. I delivered a healthy baby girl in January 2021.
Photo: Author's daughter/Shamiha Patel
Autistic women are at a higher risk of experiencing pregnancy complications, including fetal death, pre-eclampsia, and preterm birth. Furthermore, Autistic women report poor maternity experiences; they feel judged, isolated, stigmatized, and neglected.
Maternity services for autistic women need to improve dramatically, and there needs to be a broader discourse on our pregnancy experiences. It's shocking that in the UK and abroad, there's little to no support for autistic women who are pregnant. Autistic women are vulnerable enough as is.
There is so much research and discourse on how certain factors in pregnancy may cause Autism in a child, but autistic mothers are disregarded. I encourage all autistic mothers to talk about pregnancy and motherhood openly, as this could help to increase awareness of the challenges autistic women face and the additional support we need during pregnancy.
Shamiha Patel is a writer with a background in Psychology who focuses on neurodiversity, parenting, and relationships. She is a featured top writer on Medium based in the UK.