It’s been quite a while since my last post! I have basically been focused on things like church and personal issues for the past year, and ditching politics except for small doses to keep up. My faith crisis corresponded with the discovery of how much a friend actually cared about me….In October my health took a drastic change, and in November the doctor found a simple endometrial hyperplasia. In other words, precancerous. I’m under treatment and the last biopsy showed no more hyperplasia. But I have to keep getting periodic biopsies for a while. So my perimenopause is sucking. The past year and a half has been a wild ride, very stressful and always on my mind. This while I also finally got my latest book published, Doctor Bismarck: A Tale of Obsession. Also went to a few Goth Industrial concerts over the past year or two, which was amazing: Gary Numan, VNV Nation, KMFDM, Ministry/Numan/Front Line Assembly. Discovered Chant and Traitrs, which were side-acts. Almost got injured during the Ministry concert by moshers. Things have happened; I’ve just been posting about it on Facebook or in e-mails to friends instead of here.
Found a couple of things the past couple of days that I finally wanted to write about:
First, DL Mayfield posted Autism and Driving Anxiety on Tuesday. I researched nearby doctors and my insurance last year and discovered that I can’t afford an official diagnosis, so I still figure I land somewhere between Asperger’s and NVLD, without knowing for sure. Could be both, could be one or the other. It’s definitely at least one of them. And here is more evidence, yet another story from someone with an official diagnosis with driving issues. Her story sounds very familiar, with quotes such as:
In general here is a snapshot of the research: it seems that one third of able autistic people drive independently. In comparison, about 80 percent of non-autistic people get their driver’s license. Another study showed that despite high levels of interest, only one in three autistic adolescents obtain their driving license.
The most common reason autistic people choose not to drive a car is due to fear and anxiety, whether due to executive dysfunction, overstimulation, hypervigilance, anticipatory anxiety, or other factors. What is hard is that for many people in a car-centric society like the US, a driver’s license can be key to mobility, employment, and social interactions — which all impact mental health. Public transport can also be non-existent, overstimulating, or simply inaccessible to autistic people, leaving people to be dependent on cars to get their basic needs met.
But here in the U.S., most teenagers are pressured or at least encouraged to obtain their driver’s license as a sign they are entering “adulthood.” So what happens when this isn’t a possibility for us — or when driving causes us more harm than we realize? Perhaps today we can slowly begin to ask questions about the systems that capitalism claims are normal (and beneficial), but which impact marginalized people more than others.
…But when we drove to the bigger town 30 minutes away and I got behind the wheel with the DMV instructor next to me, I felt as though I was floating. It didn’t feel like I was driving, but like I was playing a video game.
…Any chance I could get, I was trying to get other people to drive my car or I would bum rides off of other people. My older sister was the main person in my life who has always driven me around but I would try and get ANYONE else to drive all throughout my 20s. Since I was squarely in my manic-pixie-dream-autistic phase, people must have just thought I was quirky, I guess? What didn’t help was the fact that I never had money and most of the cars I drove were pieces of junk (some without power steering) and I also got in a succession of minor fender benders during these years.
…I could barely force myself to drive to my doctor’s appointments once every few days, and as I drove I felt like my world was narrowing in. Smaller smaller smaller. I didn’t want to go anywhere and I felt sickening dread at the thought of driving, but I didn’t know how to tell anyone. This isn’t how a grown-ass adult is supposed to feel, right?
…Friends would ask to meet up somewhere and when I showed up inwardly I would be a mess from the journey, but unable to process or even admit how stressful it was for me to drive to another neighborhood or a new-to-me location. I felt so embarrassed by the amount of anxiety driving caused me, and I often felt like I was the only person in the world who couldn’t seem to get a handle on this one element of being an “adult”.
But now, a few years into my autism diagnosis and learning about disability, I can start to offer myself a bit of curiosity and compassion. I think about the last few decades of my life when it comes to driving and I see: anticipatory anxiety, executive dysfunction, dissociation, intrusive thoughts, emotional overwhelm, anxiety attacks, triggering of past driving-related traumas . . . and wow. No wonder that when my life gets more stressful my ability to drive without anxiety seems to fly right out the window.
…But I am astonished at the lack of research, resources, and spaces for people to process their driving anxiety and how it impacts their life.
I’ve written about this here, a post which was also shared on the podcast Living With NLD by Jennifer Purcell. I’ve been shamed for my driving anxiety, even by someone who called himself my husband for a time. He complained every time I needed his help getting someplace, telling me I should be doing it myself, even though I was a puddle of nerves every time I tried to drive. He even complained about taking me to get some milk and orange juice for my breakfast after I moved into my dorm and had no car and no way to get into town. I still occasionally have nightmares about driving even though I stopped doing it 20+ years ago. Because of Phil and others, I have felt shame for not being able to drive, even though I have gotten into accidents and had various problems because of my visual-spatial issues. There is a stigma placed on this, as if you are somehow not “adulting” properly and just need to apply yourself and you’ll be fine.
Another thing I discovered is also related to Phil. I read this post on Reddit about Catholic marriage counseling in the 90s, when Phil and I were officially engaged (and unofficially married). He insisted that we use Natural Family Planning; I tried to find information and materials for it, but struggled, since this was before Google and the Internet explosion, and I had to rely on what I found in health books and the local stores. There was a bit about testing PH, so I thought, PH paper. PH paper does exist–we used it in science class, after all–but I couldn’t find it anywhere, and didn’t know where to look. (Nowadays you can get it on Amazon!) I was very confused by how to do NFP accurately, especially since I had irregular cycles and was getting very strange results and periods that didn’t match what the books said I was supposed to have. Some of the directions made no sense.
So I asked Phil if we could get more information from the local NFP clinic. We tried calling but there was no answer. But he refused to pursue it, because he was afraid they would refuse to teach me because we weren’t officially married yet and it would encourage premarital sex. Yet the post on Reddit said that engaged couples were required to go through marriage prep that included NFP training! (And that there were couples already living together who went through this marriage prep.) Meanwhile, whenever I was in what appeared to be a “fertile” time and he got horny, he’d beg me to have sex, saying, “Don’t you want a beautiful baby boy?”
I swear it feels like Phil was deliberately trying to sabotage my efforts, like he wanted to trap me in a pregnancy, like what happened to the girl he eventually legally married (and later divorced).
