autism – Shiny journey

Perpetual Grief

I have experienced meltdowns for about as long as I can remember, such is the joy of the autistic human! To the outside onlooker it might look like I am upset as I usually cry, or agitated as might rock, or pace, or just be being obstinate or aloof as I don’t talk. So I thought I would try to explain what I feel on the inside.

It usually starts with a sense of disconnection, feeling that, even if I am surrounded by people, I am utterly alone. I know this feeling is common for lots of people, if not everyone, but that for me is the start. This can be triggered by, well, pretty much everything. I am also hypersensory, which pretty much does what it says on the packaging – noises, textures, visuals, smells, even tastes, can all create this feeling of disconnect for me. The world can be a scary place. Once I lost two hours of my day because someone brushed past me in the street, whilst I was wearing my new coat (only been hanging in the wardrobe for two years at this point, things need to acclimatise!) and as I had not fully pondered the new fabric (it was in the wardrobe doing the visual, not on my arms doing the ooh.. fabricy fabricy feeling!) it dragged funny. It felt horrifying. And more importantly, it felt new. So my brain needed to fully process this exciting new development. For two hours. Even writing this down, it feels ridiculous. For two hours, I hyperfocussed and cried over a weird sensation that my new coat created. But back to the start point, what does this actually feel like?

It feels like grief. Imagine the most intense sadness you can, the most brilliant white light of emotional agony, and then imagine the absurdity of someone asking you if you are alright? In this grief state, there is no room for questions, no room for answers, I am screaming so loudly, and I can’t make a sound. My verbal communication disappears (but I can usually type or write) so I cannot even tell anyone how bad things are. It’s now as if I am completely disconnected from the world and am consumed with such an intense grief, that if this goes on for more than hour (and sometimes, particularly if I am alone, several hours), it leaves me in a very dark place where thoughts of self-harm have been a feature. It is nothing I would wish for any other human, but sometimes I wish I could explain what is happening, as me being like this, breaking like this, causes people to distance themselves. This compounds things. Obviously. It isn’t that I am sad, depressed or looking for attention, its that the wiring in my head (if ever you have an idle five minutes, check out autistic brain scans, they are all different! Neurotypical.. all the same..) is different. My processing of the world is different, not better, although being hypersensory around bread baking.. I could literally lay on the floor and achieve mastery levels of meditation within about 4 seconds, and those 4 seconds are just me getting myself comfy – the world is no more, there is only bread smell! So maybe it is sometimes better, but largely it is just different.

I have explained to those closest to me what I need when I have a meltdown. Mostly they neve just go from zero to sobbing on the floor within two seconds. I usually have time to ask someone for help. That has been a critical learning curve for me. Getting diagnosed meant I understood what was happening better, and through that, could put systems in place to make things easier for me. I phone people and ask them to talk at me. I do not want questions, ‘are you alright?’ is about the worst one, as then my brain, clearly knowing that it isn’t alright then realises that it is obvious to others that I am not alright, process cycles round and round.. What I want is to hear about someone else’s life, what they have been doing with their day. It can be as boring as anything, and it grounds me. I don’t want to hear about me. If someone is in my space, then a huge extended hug often helps too. Both of these things reset my head space and I can be connected and in a happy place again.

Map Point: Where do I still need to ask for help?

My brain, again

At the beginning of the summer, I had a doctors appointment. I had been waiting for this appointment for around nine months (which was an improvement on the year that I was originally quoted!). Part A took place in London, and part B was closer to home, and for this one, I was required to bring support, so I enlisted the assistance of Robert, as he knows me well. By the end of the appointment, I had two things. A wet face and a diagnosis of A-typical high-functioning autism.

A while back this was called Aspergers but medical chaps and chappesses are trying to phase that term out as it means the same as high-functioning autism. I understand why people like the differentiation. The autistic spectrum covers a huge range of people with hugely varying behaviours. And to put everyone in the same box can feel somewhat misleading. Some people develop better coping skills, others not so much. I have been told that high functioning autism means autism without learning difficulties, but I don’t know how true this is.

What I do know is that as a woman, my chance of being diagnosed is only 20% compared to that of a man. Women apparently develop stronger coping strategies much earlier, thus it is less likely to be picked up. And everybody has quirks, things that would qualify as being on the autistic spectrum, but that does not make someone autistic. Having lots of quirks, that have always been present, does. I can never appreciate what it is like to have a neuro-typical brain and I guess the reverse is true too. (Incidentally, the a-typical bit means that I don’t present as a typical autistic person, in case anyone is wondering, I have exceptional coping strategies! I rock!).

When I first got my diagnosis it made sense of the obvious things, my social ineptness in unfamiliar environments, my broken sleep and levels of anxiety. But as I started to read up, it has become increasingly apparent that other things that I do are also common traits. Like rarely initiating social contact despite having lots of love for my friends. It mostly just doesn’t occur to me. And if I have one appointment in the afternoon, my morning will most likely be entirely unproductive until that one thing is done. I was diagnosed as hyper-sensory in my early twenties and apparently, this is true of almost 80% of people with autism. When Robert recently got into my car in the evening, having used TCP disinfectant in the morning, it was still strong enough to make my eyes water. And I should probably not share the most voraciously grim smell that I could smell in Kate’s car recently that no one else could.

The biggest contention is how I think. I never stop, even when I am sleeping, my brain is running variables on situations and I have to make a conscious effort to stay asleep. And am not just considering one thing, it is usually two or three. sort of like listening to piece of music and being able to pick out every instrument’s melody. Or maybe more like listening to a few different pieces of music at the same time and being able to follow them all. Curiously, analogy aside, I find that listening, playing or dancing to music really helps my brain to switch off its usual chatter; the quiet is sometimes nice. I recall an ex once asking me to tell him everything that was on my mind. Forty minutes later he was looking like he had just been steamrolled into oblivion and back. He was a brave man to ask that question!

The most utterly best thing about diagnosis is that I seem to be going easier on myself. I am not judging myself as harshly when I struggle with things, which has led to me mostly feeling a lot calmer. It is also giving me permission not to do everything just because I feel I ought to. This is massively empowering.

I had many reservations about writing this post, but it has been on the forefront of my mind for a while and has made writing other things more difficult. I am also aware that this might change how others perceive me, but that is ultimately down to them. I am no more or less me than before my diagnosis, but I am happier.

Map Point. What am I scared to say?

Photo note, I love liquorice allsorts, but not the fondant, they are the wrappers to the good stuff!

Sensational Shirley of Sittingbourne

Today I had an appointment in a town that I have never been to before. I went with Robert, as my personal inbuilt navigational compass is somewhat precarious at best. If there is an opportunity to get lost somewhere, then there is a strong chance that I will take it! We took the train from my seaside town to a little further inland and stepped out of the station.

To me, stations are always placed in weird places in towns. Usually somewhere slightly on the outskirts that a step in the right direction will land you in the main part of the town, which is good. But a step in the wrong one will render you wandering residential streets with a vague and desperate feeling that you should have packed a tent.

So I braved it and asked a local. Just to get us started in a direction that would not require the use of a primus stove. And we found Shirley.

Shirley was coming past the station with her partner MeMe (pronounced me-me). I don’t know if this is the right spelling and apparently it was not even his actual name, but a pet name that she called him. Shirley then not only pointed us in the right direction but offered to take us to our destination. She pointed out the local Costa which she said was expensive and then some local cafes which she said were much more reasonable and did really good food. On route, she also pointed out some good second-hand shops, the bingo hall and the shopping centre. Shirley was a natural town ambassador.

I asked Shirley about her accent, which she said was American. Shirley was from Michigan and had been in the American Airforce, and after her last station in Germany, she decided to come to the UK, as she loved it very much. This was in 1971. She then became a UK citizen and got married and had children. Her husband had died some years ago, and then she had met MeMe. Her granddaughter was nine and has autism and dyslexia, but had finally managed to make a friend and has just begun learning to read. She was really proud of her.

When we arrived at our destination, me and Robert then thanked her profusely for her assistance and went into one of the cafes that she recommended. The women running the cafe were awesome, they were so incredibly friendly and helpful. We sat in the sun-dappled garden and on the wall was some incredible graffiti. This was throughout the town as well, some truly beautiful graffiti adorning side alleyways. I felt compelled to photograph some of it. It was an amazingly enriched day. On our way home we got the station just as our train was about to pull in. No rushing, just an utterly chilled.

Someone told me a story recently that was along the lines of this. A man left his town in search of a new place to live. Eventually, he came across another town. Before he entered he saw an old man sitting just outside it, so he asked him what this new town was like. The old man countered this question by asking what his old town was like. The man responded by telling him that people there were mean, no one cared about anything, it had not been a good place to live. The old man considered his response and told him that the new town he was about to enter was much the same as his old town was. The man thanked him profusely and went in search of another new place to call home. Shortly after the old man was asked the same question by another man in search of a new place to live ‘What was the new place like?’ Again the old man countered with the same response as before and the man answered that his old town was a happy one, people were generous with their time and he had felt love there. The old man paused and chose his words carefully, and told him that the new town was much the same as his old one had been.

Map Point. How much does my world represent what I feel?