Autistic and Pregnant

By Carly Ott

Today marks 20 weeks, the halfway point in my pregnancy. I had all but given up my dream of being a mother when I was severely depressed in my mid-twenties because I couldn’t figure out why I couldn’t figure out how to get along with other people. I didn’t get diagnosed with autism until I was 28 and it took a few years to get back on my feet. I finally ventured back into the dating world at the age of 32 and met my future husband thru eHarmony. I am the first person with autism he’s known, so it took a few years for us to get to a place where we were ready to start a family. Unfortunately, by that time we were both around 40, so it took a miracle of modern science, in-vitro fertilization (IVF), to finally get that BFP (“Big Fat Pregnant” test result) last May. The upside of IVF is that we know that we’re likely to have a healthy baby boy in January!

I’ve tried to read up on pregnancy and motherhood on the spectrum, but there’s not a lot out there. One theory I like is that we actually make great mothers because we research, research, research whenever we know we’re going to be encountering something new! The biggest issue occurs when people in authority misinterpret us and call in Child Protective Services when in reality, nothing is wrong. I’m going to hope that forewarned is forearmed in that case.

I’ve been thinking a lot about the history of women with autism and motherhood, and I think that overall, there’s probably no difference between us and our NT sisters. We may be more inclined to understand what our ASD children are going thru, and baffled by our NT children, but no more baffled than they are of their ASD children. I’ve been paying attention to the autistic women forum that I’m a member of for the past few months, and at least once a week, if not more, yet another woman announces that she just got diagnosed, often in the wake of a child’s diagnosis. Even more frequent are the women who exclaim how excited they are that they now know why they’re different, even without the cost-prohibitive diagnosis. We’re out there, and we’ve been raising kids successfully for decades if not longer.

From a sensory perspective, pregnancy has been interesting. There hasn’t really been a change with my touch, visual and sound sensory issues, but my super-sniffer has gotten even more sensitive — to the point that my husband says that he’ll just have to trust me that I can smell something. One sense that has always intrigued me is the little-known sense of interoception. It’s the sense that lets you know what is happening inside your body. I’ve always had an odd one: Sometimes it’s on, sometimes it’s off. At times, I have had to set an alarm to remember to stop working and go to lunch. More often than not, someone else is the first to point out that I have a headache and remind me to go take a pain reliever. At other times, it’s so turned on that I am aware of every little thing going on in my body. Every part of the digestive process, the interaction of hundreds of joints at once, everything.

This is where pregnancy gets interesting. A couple of months ago, I started feeling something like a little pencil eraser jabbing my insides. Everyone told me that 13 weeks was too early to feel movement since it’s my first pregnancy, and that it’s supposed to feel like the flutter of butterfly wings at first. But sure enough, as the weeks went by, those jabs gradually got bigger and bigger. I can’t imagine what it would feel like to have a butterfly inside of me, but I imagine it would be a little creepy. I’ll take a pencil eraser any day. I truly feel so blessed that even at this early stage, I get to feel him move every day and know that he’s alive and, literally, kicking!

My next step is to find a doula. I was thrilled to find out that they exist when I learned that there isn’t a nurse with you in the delivery room the entire time. All first time parents have anxiety in those final hours, of course, but I know that I’m absolutely going to need someone to keep a level head. To make sure that my sensory needs are met, to remind us of what is happening as things proceed, and what we need to do at each stage. I’m definitely looking forward to the next 20 weeks. Now I just need to get one of those “Don’t Touch the Pregnant Belly” t-shirts!

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Carly Ott is the Autism Society Ventura County’s first board president with an autism diagnosis. She is a board member for The Art of Autism nonprofit. Carly is a founding member of the Autism Society of America’s Public Policy and Advocacy Committee and was appointed to the Autism Society of America’s Panel of People on the Spectrum of Autism Advisors. Carly is a technology project lead for national bank. Carly didn’t receive her diagnosis until she was 28 years old and credits that moment with changing her life for the better.