My parenting journey started at age 19. I was a single mother, trying to figure out pregnancy and planning for what the future may hold. While I did not know a name for it at the time, I did have an additional factor going against me as a single, pregnant young woman: I have autism.
The biggest struggle with being autistic and pregnant is not realizing that your needs are not being met.
Even as a mom now to four amazing children, I receive well-meaning comments about being a mother, but I hear “Oh, you don’t look autistic” and “Wow, you have children” more often than I should. Of course, having autism and being a mother are not mutually exclusive, and I love talking to other autistic women about what it’s like to be pregnant and how they can prepare themselves for pregnancy. The biggest struggle with being autistic and pregnant is not realizing that your needs are not being met. During my first pregnancies, I had no clue about the things that I should consider before and after birth, but I was able to learn from and adjust my experiences in time.
For me, I perceive the world in puzzle pieces. Everything has its place and should always work out according to the rules of society, science, and culture. However, as much as I try, I can’t always expect my life to follow those rules. Many unexpected things occur, especially in pregnancy. You cannot control when your child will be born, their gender, appearance, weight, or even if your child will be born healthy or not.
My first pregnancy ended in a miscarriage. There is absolutely nothing a woman can do to prepare herself for such a devastating time, autistic or not. So, when I started having pain and spotting, I drove myself to the emergency room. I did not understand what was happening until the ultrasound technician told me there was no baby and that I’d need to have a dilation and curettage, a procedure that I did not understand until years later. After that, I was sent home with no advice and no support.
Looking back, I realize the problem was not in how the doctors did their job but in how everything was explained to me. People with autism communicate and perceive information differently. Many autistic individuals (including myself) focus on the literal meaning of words. We often do not get sarcasm or miss the extra tasks needed because we are so focused on the exact words.
Looking back, I realize the problem was not in how the doctors did their job but in how everything was explained to me.
Another example of the difference in communication is in nonverbal communication. When it comes to reading people’s faces, eye contact, and body language, many autistic individuals struggle to understand the correct meanings. We might think someone is angry because they are not smiling. We also might misinterpret a phrase to mean something negative, and our view of that person is inadvertently changed so that we do not want to be around them. Such differences in communication are what often leads to a lack of proper prenatal care for many autistic women.
With my next pregnancy came a very tiny and adorable little girl. The OB-GYN I saw this time around was able to understand my concerns and communicate in a way that I understood. Since my daughter was determined to come early, I was on bed rest from 17 weeks until delivery at 38 weeks.
As many new moms figure out, the birth plan tends to go out the window once labor starts. After eight hours of Pitocin drips to induce labor and no progress, my daughter decided that my active labor would be just 45 minutes. This surprise meant the epidural did not have time to work, and way too many people rushed into my room. While I was overwhelmed, I gave birth to a beautiful baby girl who was healthy as can be.
Once everything was calm, we were moved to the postpartum room. This room is where the real problems kicked in for me. Every bit of that room was a sensory nightmare. The color was a loud mauve, with paint peeling slightly in one corner. It was only big enough for the hospital bed, one chair, and the baby cart. The noises seemed to be nonstop, echoing down the hall to my room.
After 12 hours in the room, I begged my doctor to discharge me so I could leave as soon as possible. If I had not been so overwhelmed, I would have been able to stay at the hospital for an additional 24 hours. This part of the delivery process was one I did not want to repeat.
My next two pregnancies and deliveries were much less stressful in comparison. The difference was in the support system I had in place, as well as learning from previous experiences. My birth plans were more realistic, and my choices of doctors and facilities were long thought out.
When it comes to being pregnant as an autistic woman, there are a few key things that you need to consider. The most important step is to find a support system, no matter how small it may be. Having loved ones that know your wants and needs can help when you are unable to communicate that to doctors and staff.
Second, you need to have a great relationship with your doctor. Make sure that your doctor understands the way you communicate and what you want to happen during and after delivery. Being able to communicate effectively will lead to the best prenatal care. Make sure to ask questions when something does not make sense, no matter if you have asked it 20 other times. Your doctor wants you to understand instructions as much as you want to understand them.
My next two pregnancies and deliveries were much less stressful in comparison. The difference was in the support system I had in place, as well as learning from previous experiences.
Third, make sure to tour the hospital ahead of time to spot anything that might cause sensory overload. By knowing in advance, you can either choose a different hospital or ask for the right accommodations. Using noise-canceling headphones, surrounding yourself with preferred scents, and instructing staff to speak quieter in your room can all go a long way.
Finally, remember that every pregnancy story is different. Being autistic and pregnant can have a few additional challenges but can be an amazing journey. All first-time moms are nervous about pregnancy and delivery. Lean on your support system, ask questions, and get ready to enjoy one of the most amazing steps in your personal journey.