I’ve been thinking again about the question “does autism get worse with age?” In some ways, I think it does appear to do that from the outside. In other ways, I think I’ve been able to overcome many of the developmental delays that come with autism.
Here are some ways that I think autism appears to get worse:
1. Physical discomfort. I’m much more sensitive and aware of tags on clothing and how uncomfortable they are, food that doesn’t taste good, heat/cold extremes (though more the cold). I suspect this is because I pay attention to my body more than I used to be able to do.
2. Willingness to mask. In my childhood, I wasn’t doing a lot of masking, but in my teen years and into my twenties and thirties, I masked very VERY hard because I didn’t know I was autistic but I knew well how much social tax I was paying for being different and I kept telling myself that I was naturally built wrong and had to change. I do that less now, and I have much more of a fuck y’all attitude when people seem to be demanding I mask.
3. Energy. I have a lot less energy than I used to have, probably partly a function of age and partly a function of the autism tax. But as a result, I have to choose more between using that energy for other people or using it for myself. I often end up choosing to use it for myself because I have to in order to stay alive.
4. Mental health. When people ask me if I found an autism diagnosis helpful, I have a mixed response. Yes, it was helpful to see myself more truly, in a more holistic way. But it was a hit to my ego in a way I’m not sure anyone who isn’t autistic can understand. Autism is a deeply hated diagnosis, worse than almost anything else. We are seen as not human and that hurts my mental health and makes me wonder about the value of continuing to survive.
5. Hiding myself. I used to think it was my job to hide myself from other people because I was just TOO MUCH. I am still TOO MUCH. I just stopped caring.
Here are some ways that I think I’ve learned to be less autistic:
1. Empathy. I suspect I always had empathy, but it didn’t always seem like it because I didn’t know the social cues that other people showed that meant they needed empathy and I also didn’t know the social script for empathy. I do that much better. I think I’ve always cared deeply about other people, though, so inside it feels much the same.
2. Working a job. I don’t know that I was capable of working full-time in my twenties and thirties. I had a lot of energy, but I kind of flailed about a lot and alienated people around me. I think I do that less now. OTOH, I really kind of like who I used to be and sometimes wish I could still be her.
3. Small talk. I used to find small talk excruciating. Now I find it kind of background noise. I can do small talk as well as anyone. I don’t particularly like it. I find it to be a waste of time. But I guess I don’t care about a waste of time so much.
4. Popular culture. I have some very niche interests. I had so many weirdo interests as a kid and a teen. I used to feel a lot of disdain for popular culture things. But I’ve found as I’ve aged that I can see why lots of people enjoy the things they enjoy. I went to the Taylor Swift ERAS movie and while I knew about 5% of the songs, I could enjoy the spectacle. I even watch Survivor now.
5. Religion. I grew up so on fire with belief in Mormonism. It was one of my extremely niche interests. But as I’ve moved away from Mormonism and as I’ve written the Linda Wallheim books, I find I’m able to see two sides at the same time more. I understand the in and out perspectives very well and often hold them inside my head simultaneously. I can actually do this with a lot of things, political and social.
Sometimes I still get frustrated when people insist that I’m not “really” autistic or insist that I’m part of some trend—as if people want this diagnosis so they can get attention (special autistic laugh because we really, really don’t like that kind of attention, trust me). I don’t need you to agree with me, but I do find it amusing how often neurotypical people who accuse autistic people of not showing empathy are the most unempathetic people when it comes to me talking about autism. Ah, well.
This sounds so much like me.
No official diagnosis here, but I’m still not sure it would be worth the hassles and expense of obtaining one.
And, one of my lifelong obsessive interests is religion and philosophy (from a studious, anthropological viewpoint--not as a strict believer in any one faith.)
It sounds exhausting. I find Linda in your Walheim series very empathetic.