Main impairment: social or something else?

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Wow, thank you very much for your kind words. I have extreme difficulty with verbal speech, especially with loved ones. I can manage better with doctors or strangers, or even when I used to work. Put me with people I care about, when real emotions and conversations need to take place, and I freeze or shut down. I sound like a cavewoman sometimes with monosyllabic grunts when I don't know what to say. I also have a really tough time with alexithymia and emotions, which have caused a lifetime of train-wrecks in my relationship history. I know if I feel good or bad. All the other words and emotions are too overwhelming for me to process or express.

That is so very relatable: as well as autism there are a few neurological, endocrine, mitochondrial, things going on which add to it.

I think I could hypothetically be in a "close" relationship in the sense of being physically close and "working closely together" to help each other deal with daily life, but I think I'm just downright incapable of forming an even minimally healthy close emotional relationship. The one time I tried and went ahead with it, there was a lot of positive emotion involved, but at least as much negative emotion too, both usually extreme. There was no clear boundary, but the negative side tended to be more predominant, because naturally it's easier for positive emotion to flow into the negative side than the other way around. I was already generally wary of intense emotion of any kind before that, so basically what it did for me was justify and cement my wariness more definitively. "Careful what you wish for." So I just don't wish for it anymore.

I keep wondering about those things. I know I do have an endocrine issue (that thyroid disease I mentioned earlier), but my doctor insists that my daily hormone supplementation is enough to neutralize it completely. My measured hormone levels have been mostly stable for years, although two years ago I inexplicably started having hyperthyroid symptoms and had to decrease my dose (I'm still taking the lowered dose), which doesn't seem to make any sense.

I've had my brain scanned, but whatever the neurologist was testing me for, he didn't find it. He concluded that I had some form of "silent migraine" (secondary symptoms of migraine, without the main symptom of headache most of the time). He prescribed me some useless medication that just made my pee smell weird. He didn't seem to know anything else to prescribe me or advise me after that medication failed.

I've long been wondering about mitochondrial issues, but I don't know how to ask my endocrinologist about it (she's the one doctor I see regularly, and she sort of acts as my GP), without my complaints sounding too vague and generic. How do you get tested for it? Is there any treatment? I imagine that there isn't all that much that can be done in terms of medical treatment in my case (regardless if it involves mitochondrial issues or not), but what I'd like to know at least is when it's a good idea for me to exercise and when it isn't (especially considering that there's a consistent history of heart disease in my family, and doctors strongly advise me to exercise regularly). Sometimes it makes me feel better and improves my sleep quality and regularity, sometimes it just has the exact opposite effect.

I've gone through three or four overnight sleep studies, the one thing they concluded was that I had moderate-to-severe sleep apnea, which wasn't a surprise considering I've had periods of really bad snoring since puberty, or maybe earlier (never been overweight though). My parents say I haven't been snoring in recent years. Doctors say it's thanks to decreased stress and increased physical activity.

I still have pretty bad teeth grinding in my sleep (got a molar broken in two, once...), but I feel like it doesn't really cause any short-term problems other than occasional headaches and discomfort in my ear. I should remember to get a dental guard once the pandemic is over though. I keep remembering and then forgetting it again and again.

For me, emotional regulation, alexithymia and executive dysfunction are the main problems.

If what you're describing is what I think it is, then it's actually more common than it may seem (3-6% of the population, according to this expert):

Quote:

Dyscalculia can occur in people with high intelligence, good memory, who go to school every day, have really supportive backgrounds, and yet they're unable to do what everybody else in their class can do: simple arithmetic.

You can often spot a dyscalculic (though these aren't formal tests) in lots of different ways. For example, they have great difficulty in remembering telephone numbers. They have difficulty in remembering any numbers. So they often are going to use the same PIN, when they shouldn't, for lots of different activities. They're very bad at shopping.

One of the first developmental dyscalculics we came across was in prison. And he was in prison for shoplifting. Why did he shoplift? Well, because he was too embarrassed to go to the counter, because he didn't know how much money to give. He didn't know whether he was getting the right change.

I'm feeling more relaxed today after spending all day in a dark room, maybe I'll sleep well tonight. Fingers crossed. In the end I guess sometimes it's actually a good idea to approach this as if it were migraine. But then again, sometimes it actually makes it harder for me to sleep at night instead if I avoid light / general activity / stimulation during the day.

That's probably the most frustrating part. When I do realize something's off, for each potential thing to make it better, there's already precedent where it made it worse instead. I often end up insisting on things that are doing me harm, or hesitating to do things that might help, because there's no clear sign to me to tell the difference between "I'm doing/getting too much of something" or "not enough of it" instead.

It might be time to go to Salvador....

Social impairment is the only one that keeps me from being truly happy and having a full life. I have others but they won't keep me from having a full life.

Im really good at authority in fact i can easily be in the army
but im just not into all the social chitchat and friendships and getting along with people

i dont care what people think of me though

Salvador Dali!

My social ineptitude keeps me from making real life friends.

I notice a lot of people are commenting on social challenges. I wonder though, if we all lived entirely alone in the middle of nowhere, without human contact, does that mean some people wouldn't be affected by their autism? In my case I'd still feel profoundly autistic because my sensory impairments and repetitive behaviours would make life difficult, and cause me duress. I feel my autism even when I'm completely alone. I can tell that something is amiss with my nervous system which is problematic 24/7, and not just in social situations.

That's the main thing I had on my mind when I posted the thread. Isn't it strange that what seems to be the main problem for maybe half or more of all "spectrum" people isn't even about social impairments, while the whole idea of autism still seems to specifically revolve around social impairment? But at the same time, there clearly are those whose main challenge does revolve around that. It seems like recognized categories are still lagging way behind what should be obvious to those in charge of creating them. I think this has real-world consequences.

Interesting thoughts, and interesting topic. I'm definitely autistic 24/7 no matter what I'm doing. Even if I'm alone, and I have my sensory environment exactly perfect, I'll be stimming or ruminating, or unable to watch TV and movies because I don't recognise characters from scene to scene. I can't work out people's intentions or nonverbal behaviours in books, media, or news. I'll be following my rituals and routines and feeling about 13 years old emotionally. It's like I'm forever stuck in the book Freaky Friday, and I switched bodies with someone who was supposed to be an adult, but isn't.