In the past week I’ve been thinking a lot on my mental health, and have encountered some fancy-sounding terms for how I experience the world. The big new ones are sensory processing delay, mirror pain synesthesia, and rejection sensitive dysphoria. I’ve also been reminded about my intolerance of uncertainty, monotropism, and alexythemia.
This laundry list of psychological technobabble is oddly comforting to me. Each one describes a feeling or a pattern that I don’t observe in many people around me, and that’s made me feel quite alone sometimes. If each of these things are in someone else’s head - and not just my own - then they must be real. I feel validated, and I each term is a key to more information and help.
Do I have all these thing for certain? To be clear, nothing is diagnosed. But as far as one can self-reflect (and discuss with others), I do. What I’m not sure about is the degree.
Let’s take the example of mirror pain synesthesia. I encountered the term earlier today in the Actually Autistic1 group on mastodon. Someone asked if other autistic people experience a physical sensation of pain when seeing others hurt. A few people said yes, and another contributed the term for it. I took to the internet for more information. The condition, sometimes known as mirror touch synesthesia, is more common in people with autism, and may or may not be related to high amounts of empathy.
I don’t talk about this a lot, but one of the reasons I don’t eat meat is that when I first really internalized how similar animals were to humans, the idea of biting into the meat (muscle) of a chicken thigh would give me some pain and discomfort in my own thigh. Right now I feel it more as a tension than a pain, but it really doesn’t encourage an omnivorous diet.
It’s more intense with watching humans experience pain. I can’t watch a lot of action movies, and I skip horror movies entirely. I loathe slapstick comedy. I can get through the discomfort for some otherwise genuinely good entertainment - and it can even be a net positive experience - but it’s not easy2.
All my life, I’ve felt distinctly silly for these reactions. I know I’m not the human in the movie, and I am most certainly not the chicken. I would occasionally describe these feelings to someone, but no one volunteered similar reactions. And so even though this is something that has been observed in 1-2% of people, it makes me feel more normal to have it.
to what degree
What I’m not clear on is the extent to which I have mirror pain synesthesia. Descriptions I found varied; some people feel literally the same touch that they observed, others describe something like an electric shock in the same body part where they see something painful happen. I feel something like a quick stab sometimes, but mostly it’s just a surprising amount of focused tension where I’ve seen an injury.
When I search for more information on any of these terms that describe my cognitive landscape, I’m likely to encounter the pathological model of the condition. And part of that is simply because it’s medicine; someone may not notice or seek help for it unless it is interfering with their quality of life. But the pathological model will also assign wrong and right to a condition - sick and well - so if you seem to lead a “normal life” it must be… right.
And for me, this condition is not disabling. It has left its imprints on my life; it is a factor in the genres of entertainment that I can consume, my strong pacifist tendencies, and nearly 25 years of vegetarianism. But it’s more a point of interest and understanding than a huge factor in my life.
the cost of normal
For any single one of my probable conditions, I am in some uneasy middle ground. Looking at Rejection Sensitivity Dysphoria (RSD), there’s the “normal” (rejection is hard for a lot of people), the “clear case” (RSD can prevent some people from maintaining relationships and trigger strong depression), and I fall somewhere in between. The description of RSD speaks to my experience, and my fears of rejection (and reaction to small rejections) shape my emotional landscape far more than I’d like. But I can still round myself up to normal, with a little work.
I can list somewhere between five and ten conditions that occur in <10% of the population, are found to be more common in autistic people, and affect my ability to interact smoothly with the world. To keep my life humming along as I’d like, I do little bits of work to smooth things out. Extra communication here, strong boundaries there, regular self-reassurance, processing some delayed emotions when I can… It adds up.
Over the last week, I’ve been self-soothing to handle high levels of uncertainty in a relationship, having difficult interactions with friends around sensory overstimulation, and processing of some (unfounded) fears of rejection at work. And the cost of rounding myself up to normal has been insomnia and a couple of sick days.
The sheer exhaustion of managing myself has been quite clear lately. Nothing is particularly wrong, but dozens of little things and adaptations are constantly taking a toll on me. This is the road to burn-out; it’s a long, slow road, but at the end is an even longer burn-out, I think. And so I’m trying to steer away. Some of this work is internal (and in progress), but some of it is in self-advocacy and asking for accommodations.
Accommodation, to me, implies disability, and I’m in the process of coming to terms with my identity there. Certainly I’ve been telling people I’m autistic here and there, but I’ve have both mixed results and mixed feelings about its usefulness in getting my autistic needs met.
At work, I’ve had a lot more success saying “I prefer quiet” and “that room echoes too much for me” or just using earplugs than I have with saying “I’m autistic” or “I have trouble processing multiple streams of audio input.” If I tell a friend “I find it difficult when you take a long time to reply to messages” I assume they would make an effort to help me without having to add “I am autistic and have a low tolerance for uncertainty and often pre-assume I’ve been rejected.”
so am i normal?
Yes and no.
Internally, deciding I’m not normal is a permission slip to take all my little needs and quirks seriously. Reminding myself that I’m autistic and likely have a harder time than the average person helps me be a stronger self-advocate, and gives me more tools for understanding myself. Lists of the ways I’m not normal are fascinating.
Externally, linking my needs to autism has not brought me much success. If I ask for something as if the need - and I - are normal, I get the same result and the conversations are easier. I think it has a place where meeting needs becomes a negotiation, but that hasn’t come up much. In my interactions, Autism mostly features as the special interest that I talk about a lot.
So really, the answer is to normalize autism.
Many autistic people use “actually autistic” as a phrase to denote that we are autistic people speaking for ourselves. Autistic groups and hashtags are sometimes full of non-autistic people who feel they can speak on behalf of autistic people, and it is irritating. ↩
Watching TV + movie violence is distinctly easier with one of my partners, my theory is his presence snaps me our of mirror mode and into reality more quickly than I’d do on my own. ↩
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