Ah … Such a beautiful word, but hardly anyone uses it anymore : ‘manifestations’.
It reminds me of 19th century ‘gentlemen scientists’ investigating spiritism and somnambulism. :-)
The topic of this blog, however, is nothing as esoteric as the title might suggest.
In this blog, I want to talk a bit about some of the ways in which ASD ‘manifests’ itself in me,
at this present time.
Yes, that’s right : ‘this present time’. I have not always had the same problems as I’m having now. Other people have written the same thing on their blogs. ASD may be present from birth, but the ways in which it makes itself known, change with time.
It also seems that a fair number of people (including myself) can ‘get around’ ASD when they are younger, but struggle more as they get older.
This is probably nothing new for you people that have gotten your diagnosis a long time ago, but it is a good way for me to ‘organize my thoughts’.
So, don’t read this as a long list of complaints. It is not meant that way. It is simply a list of things that ‘are the way they are’ …
The thing that bothers me the most, is something that has been around for many, many years : a terrible, awful lack of energy.
Other people go to work, take care of the kids, cook and clean, have hobbies, visit family,
go out in the weekend, …
I come home from work, and feel exhausted. Even watching tv or reading a book is too much. I just want to go to bed. Holidays and weekends are for recuperating. Not for doing fun things.
This has become a very frustrating thing for me. I have so many ideas floating around in my head, for projects and things I want to do … But I just don’t have the energy.
Next big issue for me : social interactions. Or simply stated : I feel uncomfortable around people.
It’s not that I am afraid of people … It’s more like having ‘performance anxiety’. I feel like people expect me to behave in certain ways, do certain things … and I haven’t the foggiest idea of what those things might be.
I avoid parties (even family parties) whenever I can. I detest the telephone. I hate it when people come to visit me at home.
I don’t like to talk (so exhausting) and would much rather use telepathy (if only we could !). When I’m stressed I can’t look people in the eye, or think, or speak very coherently.
I don’t understand why people like doing certain things (going to work, doing ‘group things’, …),
and I find most conversations incredibly boring.
This doesn’t mean that I think I’m better or smarter than other people. On the contrary ; it makes me feel very insecure.
I also never had a close friend, or even ‘just’ friends.
That realization caused me a lot of pain in my teens and twenties. Now, in my forties, I have ‘accepted’ this as ‘the way it is’. It doesn’t mean that I sometimes wouldn’t like to have a person around that I can talk to, laugh with, or share something funny with.
I feel as if I have absolutely nothing in common with most people in my environment. When I’m around other people I can’t be myself. I feel like I’m pretending to be someone ; I always have to wear my ‘mask and uniform’.
I’m actually half convinced that I’m an alien sent here to ‘observe the good people from Planet Earth’. Hmmm. Yes.
Loud noises are painful !
Unfortunately, there's lots of them : an ambulance passing me by in the street, motorcycles and lawn mowers, a car alarm going off, the vacuum cleaner, neighbors playing music in the garden, people arguing, putting plates and cups in the cupboard, lots of people talking at the same time, … The list goes on.
Bright lights & flashing images hurt my brain.
Some examples : shops with bright lights, watching tv, websites with ‘animated’ content.
Crowds make me very uncomfortable.
There’s something … unnerving about the movement of lots of people present in one place (think : streets, shops, parties, …). I also tend to feel a ‘physical’ pressure on my body when I’m in a crowd.
Sometimes crowds induce panic. I’m not sure why.
I feel anxious and stressed most of the time, without consciously being worried about something.
I’m in survival mode most of the time.
I either sleep too much (more than 10 hours), or too little (less than 4 hours).
I have gastric and auto-immune problems.
I have all-day-long stress headaches, and a ‘fuzzy’ brain.
I’ve had a couple of migraine-like episodes in the past months.
I have a lot of trouble with mundane tasks such as keeping my house and garden clean,
cooking, buying new clothes when the old ones are worn out, paying bills on time, etc.
I also no longer drive a car.
Sometimes, a task is hard to start because it has ‘vague’ boundaries (cleaning the house). I don’t know where to start, but when I finally do start, I get distracted by other things that need to get done as well (or I will forget all about them).
Other times, tasks don’t get started because they are scary/unfamiliar, and I think I’m going to mess up (my shower is leaking and -really- needs to get fixed).
I’m also rather forgetful. When I’m in the living room, I think about something that I need to get from the kitchen … But by the time I get to the kitchen (10 sec later), I no longer remember what I was supposed to do there.
I really dislike cooking. I don’t enjoy food, and I think spending a lot of time preparing and cooking food (and cleaning up afterwards) is just a huge waste of time. As you can guess, my daily diet is rather limited and monotonous. I know that’s not a good thing, but there you go.
I find it difficult to ‘get on with my life’ when something unexpected happens (internet is suddenly down, someone is late to an appointment). But the reverse situation also causes stress. For instance, when I have an appointment I find it almost impossible to do anything at all until that appointment has passed.
I tend to put others first. I’m always ready to help out. I think this should be the default behavior for people, but instead I hear people say about me that I’m easy to manipulate. Sigh.
If I had to describe myself in one word, it would be ‘friendly’. Instead, I’m being called ‘aloof’ and ‘snobbish’.
I used to be extremely sensitive. For instance, when someone would thank me for something,
I would get all choked up. Or when I would look at how sunlight was making patterns in water,
I would feel so utterly happy that I could cry.
Strangely enough, that sensitivity has disappeared. Now I feel emotionally … ‘flat’. I live. I survive. And that’s it. I don’t get happy feelings anymore (but also no sad feelings).
If I didn’t have to, I wouldn’t leave my home. At all. My home is my safe place. My refuge.
I don’t think all problems I described above are ‘primary’ symptoms of ASD .
In my opinion, a fair number of them are ‘secondary’ symptoms (caused by primary symptoms).
For instance, feeling uncomfortable around people causes stress, and trying to somehow ‘fit in’
costs energy. Together, with not eating right, these things will undoubtedly result
in a lack of energy and a range of physical ailments.
So, at least in theory, taking better care of myself and listening to my body should help me get rid of some of the items on my list. :-)
If you want to read more about ASD symptoms, I can recommend two blogs written by people who have a bit more experience in these things than I do :