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

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

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.

No problem at all. It's so interesting, I feel very averse to vision unless I am familiar with what I'm seeing and very averse to sound unless it is musical. This could be wrong but I'm starting to wonder if there is something with 'disunity' and 'unity' in perception. Music is layered in synchronising patterns in a framework, which is incredibly pleasing because it's as though life and nature are working together harmoniously with the patterns mapping on to each other. If there is relatively spontaneous sound around me with too many different patterns, I struggle to 'harmonise' it into any meaning and speech recognition goes out the window. It's as though physical disunity produces emotional discomfort, and 'harmonised' actions and movements produce peace. In the same way I enjoy watching certain films over and over, because once I understand the framework, I learn something new each time I watch it by being able to relate it to the context.

I don't really have anything much in the way of reference material, I'm afraid. I've been using forums such as this one for about five years now, and did collect a lot of useful links; but unfortunately, I lost most of it when my computer died a couple of months ago. Ironically, if my executive functioning were better, I might have done a better job of curating my information about executive functioning!

I did learn very quickly after diagnosis that the stuff they use for diagnosis is only a tiny part of what autism can include - they always focus on the social and communication side of things, but for most us, those seem to be knock-on effects of much deeper perceptual and cognitive functions of the brain. Things like my aphantasia (or its opposite, thinking almost exclusively in pictures), executive function problems, attention deficts (very similar to parts of ADHD), and so on, are all incredibly common. For some people,  they can be more disabling than the typical signs of autism that the "experts" judge it by. That thing of "opposites" is common too - there are maths geniuses and people with profound dyscalcula, professional proof-readers and dyslexics, people with hardly any sense of pain and people who'd find the stroke of a feather agonising - and even people who might show either extreme depending on the circumstances.

What you've described about your reaction to words is another good example - I also sometimes find myself in a state where other people's speech seems almost like abstract noises which have no meaning, especially when having, or close to having, a melt-down or shut-down (and terms such as "shut-down" and "melt-down" are also ones that you'll come to learn very quickly!).

Watching TV and films is something that I very rarely do - only if I catch them by accident when visiting other people usually. I am absolutely hopeless at following narrative, and interaction between characters usually leaves me as perplexed as it does in real life. It doesn't help that I have terrible face recognition (prosopagnosia - I guess related to the aphantasia), so if characters keep changing what they're wearing or have very similar voices/accents, it's very hard to follow who is who. Factual stuff, like documentaries, I'm OK with, though I have a strong preference for reading that kind of thing.

Music, on the other hand, has much the same effect on me as you described. It really centres me, relieves anxiety, and often helps me with working through my emotions. In fact, I can find it very difficult to concentrate on anything else at all if there's music playing - which can be a bit of a pain sometimes if I'm trying to follow a conversation or get my shopping done.

The written word is also a big thing for me - I was hyperlexic as a child (another common autism component). I learned reading more easily than speech, and unusually early. Again, though, this can be distracting at times - my compulsion to read words is so strong that it's almost impossible to talk to someone if they're stood in front of a poster or notice board until I've read all the words I can see first.

Thanks for your reply, that's really interesting. Do you have any books or online resources that you might be able to recommend relating to the executive functioning aspects or general neurology of autism? Interested in where to learn about that information. I feel a sense of disconnect when I hear words, as if something in the centre of my head is uncomfortable, and find that music and visuals heal that disconnect. I have playlists that 'prepare' and 'regulate' me for daily tasks or interactions though I do forget to use them... Interested in using pictures to set up a routine and maybe putting them in a diary instead of lists. How are you with watching films and TV?

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.