hello friend
I’m Pete Carr. I'm a photographer and this isn't a photography newsletter. This is a form of "Rubber Duck Debugging". Writing helps me process thoughts and work through problems. So I write to my computer about issues relating to mental health and being autistic. I then share it with you fine folk. There's nice photos too. 🖖
hello computer
This week's photos are from a bike ride along the Wirral coast when I needed to get out my head for a bit. It helped... briefly.
You can get prints of the photos in this weeks newsletter on my print store or you can tip me on Ko-Fi so I can buy film for my camera.
Why I find debates hard to let go off, minutes, hours, days, weeks later.
Social situations can be be hard, especially with people I rarely see. Each moment can result in me tensing up and hiding behind a mask. Of course there are times when I’m relaxed enough to remove the mask and be myself. These moments are wonderful. I felt accepted and valid as an autistic non-binary person. Unfortunately there are other moments were I feel ignored and invalid as an autistic non-binary person.
As autism is an invisible disability it’s entirely possible people forget that I am autistic. I don’t stim. Outside of meal times I guess I’m not actively reminding people of my disability. I simply sit there quietly playing with my phone/computer/Nintendo. If I had something that affected my motor functions maybe people would remember. Though I do have a patch on my jacket saying “Not all disabilities are visible.” Maybe it would be better if I had that on a t-shirt? I expect people would agree and not even think that I'm talking about myself.
So if it's an invisible disability what do I mean?
I have sensory issues from taste, touch, sight, smell and sound. All the great senses. Any one of these or a combination of them can lead to sensory overload. It might be trying to eat certain foods while dealing with bright sun coming through a window. It might be loud music from a neighbour. Being autistic means my sensory overload bar fills up far quicker than a neuro-typicals. If I remain in the situation the bar is full and I break. I become overloaded by it all. I can't handle the situation in a calm logical way and panic. Anxiety and stress add to the overload and eventually I enter shutdown. I become non-verbal and unable to process. It would be at this point that I would break out an emergency kit but I haven't quite figured out what I need to recover from overload/shutdown other than a few hours in bed with noise cancelling headphones on.
Imagine eating out with people you're not 100% comfortable eating out with in a slightly too bright place. I'd probably stare at the plate a lot so I'm not looking at the bright environment. I'd also stare at the plate a lot to avoid making eye contact with people due to social anxiety. Staring at the plate causes a different anxiety as I'm looking at things I can't easily eat. Everyone else appears fine. They all chat and eat. I appear quiet verging on the point of being rude. In an effort to relive this pressure I dive into my phone looking for distractions. Perhaps this is my way of stimming? Of course it looks like I'm being rude but I'm trying my best not to either cry or completely shutdown.
Shutdown can also be triggered by stress without sensory overload. I could be stuck in a shop trying to make a decision without all the information I need with a queue of people behind me. For some it is stressful. For me I lose the ability to talk and make decisions. Not great in a shop queue.
I've written about shutdowns before. I need to keep writing and reading so I can better deal with them because they are so debilitating and occur at random times. After 3 years of learning about autism I am still surprised by situations that cause me overload and shutdown.
Social situations can be tiring due to the continuous anxiety 24/7, especially when trying to have discussions. Imagine trying to meditate while floating in stormy seas. The situation isn't conducive to your mental state and you become exhausted. I recognise how this can affect me now, so when I find myself in debates with someone I sometimes bail when it gets too much. I get up and leave the room indicating that it isn't a place I could remain. It's better for me and the people around me than becoming overloaded or shutdown. So I get up and leave when it becomes apparent that to continue would be devastating for my mental health.
These situations leave me absolutely exhausted. I'm washed up on a beach afterwards. To make matters worse I'm also left reliving the events. I don't know if its OCD. What I know is that I will continue these discussions in my head for hours, days and weeks after. Eventually my brain will let go as it is distracted by something else triggering but it will be in there waiting. This is another reason why I remove myself from these discussions. I can't keep reliving them when they are so debilitating.
I used to spend a lot of time on forums and social media engaging with discussions before I realised that they are incredibly bad for me. I have no idea how someone will interact with me online so I try not to engage. I had it last year where someone was trying to be helpful and I was trying to be accurate and to the point. Of course it came off as rude and abrupt. Of course I still relive that a year on because that is how my brain choses to punish me for trying.
As my awareness of these situations has grown I am left between a rock and a hard place. If I find the energy and confidence to engage I am often left overloaded or shutdown doomed to relive the experience over and over. If I say nothing I instead fall into depression because I feel trapped, isolated and without a voice. Feeling like I'm on my own is how my mind gets to me. I can be sat in a room with people I know not engaging because I don't have the spoons (mental energy) and listening to my brain tell me how no-one here cares.
Should I let myself get this stressed? No I shouldn't but I often have no control. I don't chose to exist alone on a stormy sea that exhausts me constantly but that's just how this world is for me. It may seem like I'm being rude and moody because my disability is invisible (and of course totes made up sigh) but the only way I have control is to block out the world until I feel like I can re-enter it.
I can't speak for all autistics but I hope this gives an insight into why I sometimes need to wear headphones and stare at my phone instead of making small talk about random things. I'm trying to protect my mental health more and more as I better understand autism and my own brain. In the past I would have suffered through things. I can't afford that now. I make money by being a creative and I can't be creative if I'm shutdown or depressed. I also quite like it when I am enabled by the world around me enough to enjoy living.
So if I'm in my own world ignoring yours please have compassion because it's entirely possible I am not coping very well.
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What Autistic Advocacy Really Means – Autistic Science Person
How can art and design bring people together to improve our mental health?
‘The Battery’s Dead’: Burnout Looks Different in Autistic Adults - The New York Times
Trans Autistic People Use Our Whole Bodies to Express Joy | them.
Latest coronavirus advice from the National Autistic Society (UK)
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“Be bold. Be brave. Be courageous.” Christopher Pike, Captain USS Discovery.
Thank you for taking the time to read this newsletter. I’ll be back. Feel free to subscribe or send to a friend.
petes out
I'm streaming photography in various forms on Twitch.tv/petecarr. Stream schedule is Tues/Wed/Fri at 7:30PM GMT and Monday at 2PM GMT. Photography focused but accessible. Friday is a look at art events I've photographed. You can also ask me about autism and there's cat cam too.
Thank you for writing. Your words resonate with me a lot, across several different connected areas. It's interesting because when I read something that resonates, my intuition is to connect (by, say, making a comment), but ironically engaging on social platforms is, as you write, one of the hardest things. Just want to say thank you.
I see overload with my son, when it all becomes too much. You articulate it in a way that more people should understand what's going on. Thanks Pete.