When I originally wrote this post for my now-defunct blog, I didn’t know I was autistic. If I recall correctly, we were in the middle of the diagnosis process for my daughter. At around sixteen months old she presented with the “classic” signs of autism (regression, loss of what little language she did have, lining things up, not responding to her name, no eye contact, etc.), so she is one of the lucky female autistics to receive an early diagnosis.
My diagnosis came after hers, because while researching autism in females to better understand my daughter, I realized that much of what I was reading, especially about adult women on the spectrum, was describing me.
*Cue Twilight Zone music*
I’ll probably write about my diagnosis at some point—for this post, I want to look back at my experience through an “autistic lens.” The newly-added text will be in bold.
Let’s begin at the beginning. Actually, strike that. My parents read this. Let’s skip ahead a few months. Up until this point, I’d actually really enjoyed being pregnant. I didn’t have morning sickness, and my sensory issues were minimal. I don’t remember exactly when during my pregnancy I was diagnosed with preeclampsia. I think it was around the middle of my third trimester-– that is around seven months, for you non-baby-having folk.
Preeclampsia is a condition for which a pregnant person’s blood pressure becomes too high, and they release protein in their urine. A fun side effect of the high blood pressure is ridiculous amounts of swelling. Seriously, by the time I gave birth, I looked like the Pillsbury Dough Boy-– but had a much less pleasant disposition. If you had poked my belly with your finger, I probably would have broken it…
But back to preeclampsia. If it goes undetected or untreated, it can result in eclampsia, which, I think, is the medical term for “you’re screwed.” Full-blown eclampsia causes massive seizures and can be fatal. So naturally, doctors try to avoid it getting to that point.
Another fun side effect of preeclampsia is early delivery. In fact, unless the preeclampsia does not present until the woman is full-term anyway, doctors often choose to induce early labor if the expectant mother’s blood pressure reaches above a certain point. If the preeclampsia does not seem too severe at first, the woman is closely monitored if she is not near enough to full-term because preeclampsia is known for causing pre-term birth.
Basically, the body knows that the reason it is sick is the little parasite living in the uterus, and so serves it an eviction notice. This was me. After my diagnosis, twice a week I had to go in to my OB/GYN office and get hooked up to a machine that monitored for contractions. I went a couple times with no issues, but then, one day, only 33 weeks into what should have been a 40-week pregnancy, my midwife looked at the readout and put on her concerned face.
“Did you know you’re having contractions?” she asked me. Uh, nope, I sure didn’t. I guess they weren’t too terribly strong. What she told me next, however, made me realize I might have a baby a lot sooner than anticipated: “I’ve had women in active labor whose contractions I wish were this regular!”
I’m not sure whether the contractions were actually so weak that I didn’t feel them, or if not really noticing them was a sensory difference related to being autistic.
My midwife’s office is located across the street from the hospital, so she told me that I needed to go over there and check in to Labor and Delivery for closer monitoring. I drove across the street and called my mom from the hospital parking lot. I can’t remember exactly what I said, but something along the lines of, “So I think you might have a granddaughter soon.”
At the time, my parents lived four hours away from me. They had planned to be close by for my due date, but that was over six weeks away. But there comes a point when every grown woman needs her mommy. This was that time. She told me she would be on her way, so I felt a little better as I huffed and puffed my way up the hill to the hospital.
An aside: Seriously, just a note for whoever designs hospitals and/or their parking lots: make them level. Sick people, fat people, pregnant people, and sick, fat, pregnant people [me] have to walk from their cars into the building. ‘Twas not the easiest of endeavors I’ve ever undertaken.
Now, I’m assuming that I at some point I called my husband, because I know he showed up. I also know there was freaking out and general panic, but the details are hazy. I was very overwhelmed, and I tend to dissociate/zone out when I can’t handle a situation. I’m pretty sure my lack of clear memories around this time was due to dissociation.
When I checked in to Labor and Delivery, I was ushered to a room where I was connected to monitors and jabbed with all sorts of needles. They started me on an I.V. drip of magnesium sulfate, which was supposed to keep me from escalating to eclampsia and having a seizure.
I stayed there for two nights. I remember waking up suddenly one of the nights but was unsure why. A minute later, a nurse came in and asked if I was okay, because she had seen on the monitor that I just had had a seven minute long contraction. Then I knew what had woken me up.
My last morning at this hospital, an OB/GYN from my midwife’s office came to talk to me. He told me that my labor did not seem to be stopping, so they were going to have to transfer my care to a nearby teaching hospital because the one I was at did not have NICU facilities. In other words, they were not prepared to care for babies born before 35 weeks. Well, that sucked. All my birth plans flew out the window.
On the upside, I got to ride to the other hospital in an ambulance, and they played the siren because I asked them to. Whee! I’m fairly surprised, knowing now that I’m autistic, and always having known that I’m averse to change, that I accepted the change in my birth plans without a meltdown. I think maybe I was prepared for it because I’d already spent two nights at the hospital and had time to process it.
Upon arrival at the teaching hospital, I was taken straight to my room where one of the first things I had the pleasure of experiencing was to have a nursing student put a catheter in me. Now, this is partly my fault, because they asked me if it was okay to have a student insert the catheter. Feeling generous, I said yes, thinking everyone has to learn sometime.
I have decided that I do not like it when people learn to do medical procedures by practicing on my body. It was quite uncomfortable. I mean, I know having a catheter put in is not supposed to be the best feeling in the world, but damn. Ouch. Not only did the insertion cause many lots of pain, but I think that the student might have done something wrong. Or I am just built funny. Because after the initial insertion, you aren’t really supposed to feel the catheter. Oh, I felt it.
Each contraction I had, I felt like my bladder was being stabbed. Even when I was not contracting, stabby stab stab. Looking back on this, the catheter worked as it was supposed to, and other nurses checked its placement. The catheter issue might have been due to autism and sensory issues. What most people might register as slight discomfort, I was registering as extreme pain.
None of the doctors or nurses seemed to believe me when I told them how badly it hurt. I do feel that if I had known at the time that I was autistic, I might have been better able to advocate for myself.
Along with getting the angry catheter of doom inserted, I was also started on Pitocin, to increase the strength of my contractions. If increasing the strength of contractions means making them hurt more intensely, then I suppose my contractions were strengthened. Fat lot of good it did, though. Every time they checked my lady bits, I had made very little progress.
I was stuck for a long time at three centimeters, and ain’t no baby gonna come out of a three centimeter hole. Finally, they decided to use a Foley bulb to help my progress. What is a Foley bulb, you ask? Best way to describe it is a balloon that they insert into your vagina, and then inflate. Yeah, it was as awful as it sounds. Isn’t birth a beautiful process?
Between the devil’s catheter, the angry contractions, and the vagina balloon, I was kind of having a bad time. Bit of an understatement here. I was in sensory hell. As I mention next, memories during this time are hazy– it would seem that I was dissociating (or shutting down) as a defense mechanism to deal with the pain I was in.
Again, details are hazy, but I remember at one point puking into one of those little kidney-shaped bowls that my mom was holding for me. Thanks, mom! I kept asking for an epidural, but the nurses always had some reason why I couldn’t have one yet. I’m sure I got on their nerves, because I’m a wimp when it comes to pain.
OH! I just remembered another pain in the ass I had to deal with–the pain in my ass, literally. Maternity ward beds are not designed for long stays. They are built to separate in the middle, so that the doctor can be as close to the action as possible when delivering the baby. Only, mine was not a short stay.
And the metal bar where the bed separated? It was directly beneath my tailbone. My poor tailbone never has been the same. It is hurting right now, because I’ve been sitting on my ass for so long writing all this. Anyway. Moving along. I still have issues with my tailbone. My daughter will be eight in November.
When the anesthesiologists finally came to give me an epidural, they weren’t able to. To give them the benefit of the doubt, I was fat and super swollen. Also, one of them might have been another student. I don’t remember as many details from about this point on what with pain and narcotics. Yeah, narcotics.
The nurses gave me a couple doses of the good stuff, probably just to shut me up. And when I say good stuff…boy, howdy! As soon as the nurse injected the goofy juice into the I.V., I felt it going into my arm, kind of cold and tingly. Then, everything immediately got fuzzy, and I decided to take a nice little nap. Unfortunately, I say little, because the doses were so small (so as not to hurt the baby) that they only lasted for about fifteen minutes before everything came back into sharp clarity and ouchness.
Another anesthesiologist came by to try again to give me an epidural at some point. All my days and nights were running together. This time, success! They found the correct cavity in my spinal column, and my lower half went numb! Hooray! Right? Hoo…ray? Haha, nope.
I’m not sure if I had made God angry at some point, but things kept going from bad to worse. Because my blood pressure had been so high, something about the epidural kicking in caused it it immediately drop, drastically. As in, I practically passed out. My mom kept smacking my feet and yelling at me.
I could hear her, but I wasn’t doing so well at responding. I guess that was kind of a bad thing, because that was when my doctors decided they were just going to have to do things the Cesarean way. My husband was told to put on a fabulous blue paper outfit and hat, and when I was prepped for surgery, he was allowed into the operating room.
While I was being prepped, a nice man told me he had to put a “main line” into my neck. He kept asking if I was okay. I guess my blood pressure had stabilized at that point, because I was able to talk somewhat. He explained that a main line was a direct port to my heart, in case I ended up needing a blood transfusion during the surgery.
Heh, that isn’t scary at all. This is one of the situations in which my coping mechanism of dissociating or shutting down when overwhelmed really came in handy. I heard what the man said, and I could respond, but my brain was not processing what he was actually saying. I didn’t feel scared or nervous… I was just kind of existing.
Luckily, the epidural did its job, and I did not feel a thing during the surgery– which is good. I imagine the feeling of being sliced open and having a part of you pulled out doesn’t feel pleasant. Like disemboweling, only this was disembabying. Anyway, on that day, November 4th, 2011, my beautiful daughter K was born, at thirty-four weeks gestation, and six weeks premature.
This was my personal experience giving birth while autistic (even though I didn’t know it at the time). Every body is different, so every story will be different. If you’re autistic and are or have been pregnant, feel free to share your experiences in the comments below!