Hello!

Welcome, Rach.

Uphill but rewarding - yes, I like that, it sums my journey over the last few years since diagnosis pretty well too. Not so sure about the phone bit (shudder - hiss - evil person-voice machine thingies!) - I'm more of a sneaking out of my coccoon in a full suit of armour when I'm feeling very brave and the planets are in alignment kind of Aspie, I think!

I've been a coder for years, and coincidentally enough I've met someone on a little geek forum that I moderate who's working on some code for a hearing aid system much like the one you described. Most of us there make synthesisers and sound effects, but his project has been very interesting, though the maths of it is a bit beyond my understanding. I use assistive tech a little bit myself - nothing specialised, but my attention and executive deficits have really been helped by being able to send myself notifications and use photos as a better way to keep myself organised - along with a little "stop procrastinating" program I made which picks things for me to do at random when I can't decide (typical coder - I couldn't possibly just roll a dice!). And of course, the incredible internet, so that I can keep in touch with the lovely people here!

Nice to meet you, I hope you like it here as much as I do (even if I do sneak off and hide under my duvet quite often!)

Hi, really appreciate your response. Nice to  meet you too. I have a few spreadsheets that I use to manage recipes, groceries and finances, and a clothes routine, which helps a lot as I didn't realise how much energy I expended trying to figure out on the spot which item goes with which other items / context / weather! I also use a smart watch for notifications linked to my Google calendar, and a Filofax-type journal for daily tasks and general lists. Curious to hear what you do in terms of using images to help with tasks, if you don't mind sharing? No pressure though. Would also be very keen to discuss more technology-related topics here, it's my number one interest though I have much to learn. Hope you have a good day today

Sure, it's no problem - the more we share with each other, the better, I always think.

The reason I think that I find photos so useful is that I'm almost completely visually aphantasic - basically, I don't have a "mind's eye", so I can't picture things in my mind on demand (I usually "see" only the mild migraine-like hallucinations which I always have).

The photo's help with two things, both related to my bad executive functioning...

Firstly, they help with remembering tasks that I need to do. If I just read "do the washing up" on a list, it just seems to pass straight through my brain and out the other side. Because I can't visualise a pile of dirty dishes in my mind's eye, the words don't have very much impact, and the idea slips away very quickly unless I happen to be stood right in front of the sink. OTOH, if I put a photo of the dirty dishes as my desktop background, the importance of doing it is much more stark, and unlike a list, I can't do that kind of "skim reading" like you might when trying to get the gist of some writing when you're in a hurry.

Secondly, I use photos to make what I've achieved seem more "real". If I have a big task with multiple steps to do, I get very overwhelmed easily. Part of this is that horrible feeling you get sometimes that doing only part of it doesn't feel like much of an achievement. For example, if the house is really untidy, so the housework is a whole-afternoon job, I might look at it after the first hour, and think; "OMG, it still looks like a dump!".  In my head, I can't picture what it looked like before I started, and at the beginning, I can't imagine a picture of what it might look like at the end. So I only notice what I haven't done, and little of what I have done. Photos allow me to do a very clear and immediate "before and after" comparison, so that I still get some feeling of having achieved something, even if I didn't achieve everything.

That's really interesting. I get the same way in pubs etc, and have the urge to run away because I can't focus due to all of the distractions. I used to just smile and laugh to hide it but now I avoid those places altogether. What you said around seeing geometric patterns reminded me of something too. In London there is an underground station with a walkway covered in small mosaic tiles all over the walls and ceiling which don't have any repeating pattern to them, and I felt very uncomfortable and confused walking down there. If I looked at the wall I started feeling discomfort in my body because the tiles didn't seem to be in a pattern and my brain kept trying to look for it. 

Yes, I find that a very astute observation; there's definitely something very pattern-seeking about the way that my perception works, I think.

The "babble" noise that you get in pubs and restaurants is one of the things most likely to trigger a shut-down or melt-down for me. I don't go to such places often, but when I do, I need a break every 20mins or so at least, otherwise I start to feel incredibly claustrophobic and gradually dissociate from my surroundings and can't make sense of anything that being said or done. Traffic noise has a similar effect; and while not nice, I would rather have neighbours who played loud music than have cars driving past my house all the time or dogs randomly barking, even though they might be quieter.

The "migraine-like" hallucinations which I mentioned before have always seemed somewhat like that to me, and go hand in hand with a kind of visual-tactile syneasthesia. The hallucinated patterns are usually far from random, and I get the sense that it's my visual centres desperately trying to find structure in any randomness in what I'm seeing - even if it's just random neurons firing when my eyes are closed. The syneasthesia is very strongly provoked by geometric or tesselated patterns, ripples on water, or grass blowing in a breeze. Walking across a tiled floor can be quite disconcerting sometimes, as I can lose sense of the proportions of my body, while able to feel the pattern moving over and through my body (I wish I could describe it better, but there's no other common sensation that it is "like" for comparison).

As for your movies, I do the same with books. Ever since I was little, I've had favourites which I will read over and over again, even back-to-back readings. Likewise with Wkipedia pages about favourite subjects, or even old forum posts. I find that this always gives me a great deal of comfort whenever surprising or uncomfortable circumstances are making me anxious, and especially when I'm recovering from a melt-down or shut-down.

Yes, I find that a very astute observation; there's definitely something very pattern-seeking about the way that my perception works, I think.

The "babble" noise that you get in pubs and restaurants is one of the things most likely to trigger a shut-down or melt-down for me. I don't go to such places often, but when I do, I need a break every 20mins or so at least, otherwise I start to feel incredibly claustrophobic and gradually dissociate from my surroundings and can't make sense of anything that being said or done. Traffic noise has a similar effect; and while not nice, I would rather have neighbours who played loud music than have cars driving past my house all the time or dogs randomly barking, even though they might be quieter.

The "migraine-like" hallucinations which I mentioned before have always seemed somewhat like that to me, and go hand in hand with a kind of visual-tactile syneasthesia. The hallucinated patterns are usually far from random, and I get the sense that it's my visual centres desperately trying to find structure in any randomness in what I'm seeing - even if it's just random neurons firing when my eyes are closed. The syneasthesia is very strongly provoked by geometric or tesselated patterns, ripples on water, or grass blowing in a breeze. Walking across a tiled floor can be quite disconcerting sometimes, as I can lose sense of the proportions of my body, while able to feel the pattern moving over and through my body (I wish I could describe it better, but there's no other common sensation that it is "like" for comparison).

As for your movies, I do the same with books. Ever since I was little, I've had favourites which I will read over and over again, even back-to-back readings. Likewise with Wkipedia pages about favourite subjects, or even old forum posts. I find that this always gives me a great deal of comfort whenever surprising or uncomfortable circumstances are making me anxious, and especially when I'm recovering from a melt-down or shut-down.

That's really interesting. I get the same way in pubs etc, and have the urge to run away because I can't focus due to all of the distractions. I used to just smile and laugh to hide it but now I avoid those places altogether. What you said around seeing geometric patterns reminded me of something too. In London there is an underground station with a walkway covered in small mosaic tiles all over the walls and ceiling which don't have any repeating pattern to them, and I felt very uncomfortable and confused walking down there. If I looked at the wall I started feeling discomfort in my body because the tiles didn't seem to be in a pattern and my brain kept trying to look for it.