So as far as I know I’ve been/had:
- Autistic since birth, probably since before birth, knowing the current science and the repetitive movements my mom felt inside her. But definitely atypical stuff from day one, which are all small things high when added up in retrospect amount to autism. Diagnosed age 14, again ages 18-19.
- Autistic catatonia starting around age 12, diagnosed when the first major paper on it came out while I was 19. (Diagnosed by the same shrink who’d known me since I was 14.)
- Neuromuscular junction disorder, probably myasthenia gravis or hereditary myasthenia, since I was 18 or 19. Diagnosed, provisionally, age 33 using a single fiber EMG.
- Adrenal insufficiency, probably starting around the age of 27, Diagnosed at age 33 by which point it had become so severe they couldn’t find cortisol or ACTH in my blod. They assume it was there or I’d be dead, but they also assume I wouldn’t have survived much longer.,
So I had this big health crash when I was 27. One of the few measurable things we knew at the time was that my galvanic skin response, a measure of physical and emotional stress, went from very high to almost nonexistent. But we didn’t get around to figuring out it was adrenal insufficiency until much later, after way too many close calls in the hospital where I’d be seen for other conditions but be much sicker than I ought to be for these conditions.
I want to be clear I am talking about adrenal insufficiency. Not adrenal fatigue. Adrenal fatigue is a catch all term used by quacks for anyone experiencing fatigue, and requires no actual testing to confirm it, or bogus testing. It is dangerous because it prevents people from getting treatment for what they really have (which may even be genuine adrenal insufficiency) and can result in people getting strong steroids that are dangerous to the human body, who don’t need them p. vAdrenal insufficiency is where your body is not making enough cortisol and you can die from it. It’s usually easy to measure. I was diagnosed by a blood cortisol test, a blood ACTH test, another blood cortisol test for a baseline, and an ACTH stimulation test. That’s how real adrenal insufficiency is generally diagnosed.
Anyway my point is; some of my autistic catatonia traits have gotten better ever since the exact time of the health crash. In particular, I freeze for less often and for shorter durations. And I don’t anymore run around the house bouncing off the walls without any ability to control my movements. These things can happen they are just much rarer. I also have fewer full-body stims and rocking, and more hand-based stims. I still have trouble initiating movements, combining movements, crossing boundary lines, and doing things without being promoted verbally or physically. But I think I’m a little better at those things too.
This makes me wonder if there’s something about stress or cortisol (or ACTH) that plays a role in autistic catatonia. But I don’t really know who to ask. Lorna Wing is dead. I don’t trust Dirk Dhossche. I guess maybe Martha Leary and David Hill could shed some light on it, but I’ve lost their email addresses. There’s not a lot of researchers looking into autistic catatonia these days, even if there’s more than when I first showed signs.
Also, if you’re autistic and you have both autistic catatonia and adrenal insufficiency, I’d be interested to compare notes. But I don’t know anyone with both, so I’m not holding out a lot of hope there. I’m mentioning myasthenia gravis too just because the symptoms overlap with adrenal insufficiency to the point we were surprised to find I probably have both, not just one or the other. So it could be either one interacting with the autistic catatonia.
Also please don’t give me crap for using medical terminology here. It’s the only terminology I have and without it I couldn’t communicate.
I’m going to be retested for adrenal insufficiency when I get hooked up with an endocrinologist at a university (I can’t seem to find an endocrinologist that knows enough about the pituitary gland and hypopituitarism). As for the catatonia, I’ve yet to find a doctor that can accurately tell the difference between my narcoleptic issues & catatonia, so I can’t comment on that unfortunately
Interesting. I brought up the cortisol connection to my health practitioner a little while ago because I have thyroid nodules, have had pituitary mri which was normal, and all these other non-specific health concerns (extreme fatigue, weight gain, swollen neck/thyroid, pain, dizziness). I said everytime I felt overwhelmed by too many people around me, too many noises, too many things going on I got this huge surge of something and angry responses to get everything to be quiet or go away… then a big crash, and felt like I was having some strange adrenaline surges or something. I have no idea what linked me to cortisol but that is what I asked. Could this be something to do with cortisol and can you test me? They said no. Grr. One doc says I have chronic fatigue, idiopathic hypersomnia, so many other issues like gerd, multiple dermatological issues, etc. Frustrating. I would like to hear any updates if you find any research on what you talked about. Just for curiosity sake.
This is interesting. I have a friend that has same experience too. I would like to share this blog to him.