Motherhood was a dream I gave up on in my twenties. Not because I no longer wanted children, but because I couldn’t imagine being responsible for another person when I could barely take care of myself. I had hit the bottom. I could eat, sleep, get groceries, watch tv and go to the doctor but that was it. I put on 80 lbs. and isolated myself in a 400 sq. ft. apartment in east Hollywood. I thought if I spent enough time thinking about it and talking about life with my therapist I could figure it out. But we couldn’t. Almost a year passed when I happened across a Time magazine article that changed everything. My psychologist knew nothing about the condition the boy in the article had either. But we fought the insurance company until the agreed to pay for UCLA to diagnose me. I had Autism, and I’ve since learned that what I had experienced has a name: autistic burnout.
With the diagnosis came more questions. What did it mean?
And so, the research began. The first book I read was Pretending to be Normal by Liane Holliday Willey. She had also lived much of her life without knowing she had an Autism Spectrum Disorder. In her case, as it is with most women on the spectrum, she wasn’t diagnosed with Asperger’s Syndrome until after one of her children was diagnosed. Reading her story gave me renewed hope. I got services from the state, slowly worked my way back into the workplace and eventually got married.
My husband and I weren’t ready to have kids until I was already in my late thirties. After trying on our own for a couple of years, we decided to explore getting help. Right up front, I disclosed I had autism and that I would need very detailed written instructions because I’m not able to read between the lines. Due to a number of factors, we found out that we could go straight to IVF without trying other options and luckily, we have great insurance so it was affordable. A few weeks shy of the one-year anniversary of my first egg retrieval, I had an egg implanted that ended up becoming my baby boy who was born perfectly healthy in January.
Pregnancy was another story altogether.
There was exactly one, yes one, book about pregnancy in autistic women, and it was more of an autobiography by an autistic woman who was a doula. It was very good to read, but it was not the scientific book I’d hoped for to help me navigate the journey—and for a very good reason. There are no studies on pregnant autistic women! At least none that I could find. All of the traditional books about pregnancy were all over the map…some women experience X, some experience Y which is the opposite of X, some never experience anything remotely like X or Y. Not very helpful for someone who needs to know what to expect. I decided to treat the information as statistical variables, probabilities, which allowed me to at least take the broad expectation and parse the possibilities.
I found pregnancy and new mom Facebook groups to be very helpful, but even more so, the ones for autistic mothers. A community of women where I didn’t have to worry about asking stupid or embarrassing questions. Many of them, like Liane, didn’t get diagnosed until autism came up with respect to a child.
And then it occurred to me: There have been studies on autistic women and pregnancy. I realized that nearly every large study ever done likely had undiagnosed women with autism. Hidden within all the variability in the pregnancy books, I would find a description of my pregnancy.
I would love to see a large-scale study done of pregnancy and childbirth that started with an autism and sensory issues screener. It would be interesting to see if any of the divergent pregnancy symptoms that seemingly have no rhyme or reason suddenly fell into nice categories.
I never felt a “flutter” but I’ve always had an interesting sense of interoception. From the very beginning of the second trimester, I could occasionally feel something that was like having my insides poked with the eraser end of a pencil. It was pretty amazing to experience how that tiny eraser grew over the months, always in the same vicinity, because my little guy was very active. As his due date approached, that was when my journey started to deviate from that of the neurotypical.
First was the birth plan. To disclose or not to disclose?
I’ve always been very public about my autism and my story because I want to make life easier for those who come after me. I started off my birth plan explaining the parts of my autism that might come up during labor and what that meant to the hospital staff who would be trying to do their job:
“Try not to poke or tap my skin with fingertips, it feels like you’re stabbing me with needles and leaves me with a feeling like you rubbed me with sandpaper for 30 minutes. If I get mad at you for touching me while I’m in pain, this is probably why. Also, may need to wear noise-cancelling headphones if the beeping and other noise gets to be too much…. I may have trouble processing multi-step instructions when my anxiety is heightened. I may have trouble verbalizing my needs if I am in pain or scared.”
That last bit was the most important. It let the staff know to ask me leading questions and not just expect me to pipe up if something was wrong. I ended up having an emergency c-section and the doctors and staff were amazing. The OR nurse in particular made sure that everyone in the operating room knew of my sensory differences. No one batted an eye that I wore my noise cancelling headphones. The continuity of care in recovery was remarkable as well. At each shift change, if the nurse was new, the outgoing one did a great job of explaining my sensory issues.
Here’s the part that scares me the most: The countless anecdotes of women with autism losing their children at the hospital, or in custody battles, or at any other time, just because they have an autism diagnosis. Remember, most women with autism are undiagnosed, and no one questions their competency just because they’re socially awkward, like to avoid crowds and have other “quirks”. After the diagnosis, no one says, “I knew it, she was such a bad mum.” It’s mostly, “Oh, she is a bit odd to talk to, but really a great mother.”
But the fear and stigma persist.
I’m sure issues related to my autism will come up from time to time, but for now I’m starting off this amazing journey into parenthood with a pediatrician with a lot of experience with autism, particularly experience with autistic girls. Not because I think my child will or will not have autism, but because I want someone who will understand that it’s ok if I don’t communicate, act, or react typically. I have read one too many stories of medical professionals with no autism experience jumping to conclusions about autistic moms. I’m committed to doing right by my boy. Everyone who meets him agrees that he’s the happiest baby, and I aim to keep it that way.
