This month I wanted to write something a little different.April is a month of ‘Autism Awareness’ campaigns; the good, the bad and theconfusingly misguided. I am fully behind those who call for this month to beabout acceptance not awareness. I hope celebration will follow, and then, oneday, maybe our society and culture will function in a way that doesn’t needsuch declared months because access and inclusivity will be an intuitive part of how we live. In the meantime however, I want to share with you a bit of my personal experience.
I’ve had various mental health and neurological diagnoses, official and unofficial, throughout my life. The one that makes most sense to me, has been the most helpful and has helped me understand myself in relation to the world around me is Autism Spectrum Disorder. This often surprises people, but it shouldn’t. If there was a better general understanding about what Autism actually is, it wouldn’t. Key to this is the fact that one thing autism is, is a diagnosis and by that definition; a list of criteria that a group of people meet. But this will never fully describe or explain those people in all their complexity and individuality. So today I want to share with you a different kind of list, this one is incomplete and messy; it’s not a list of positives or negatives, just truths about the way I experience the world with my flawed and fantastic autistic brain. They’re all things that I’ve noticed that I share with other autistic people and I’ve become aware of as ways I often differ from non-autistic folks in my life. I hope this will give you a little insight into what Autism can mean, at least, for me.
Content warning for brief mentions of self harm and attempted suicide.
Pattern feels like a sense to me. My brain is constantly finding links between things, figuring out how they fit together, figuring out if there is a different way they fit together. I can sort through a lot of information quickly and pick out what’s important. This means I tend to spot things other people don’t. This makes me good at analysing and problem solving. It also means I can really struggle to ‘let things go’ when it would probably be the healthier thing for me to do, because if something feels out of place, like it’s not connecting right, I need to find out why. I can also become overly preoccupied with the Big Ideas and forget about the real people making up the components. I’ve noticed recently that I can often spot the missing piece of information that is causing someone not understand something. I feel a wonderful sense of calm and contentment in moments where I feel I’ve solved something or helped someone in this way and I get a brief glimpse of the way everything is connected.
I rarely feel neutral about anything, ever. I have deep seated instincts and feelings about things most consider arbitrary; which bus seat should I sit in, what colour should something be, what the right order to unload a draining board is. I find it hard to wrap my head around the idea of feeling neutral about something. Perhaps a lot of this is related to that strong internal sense of pattern, I think it’s also just about being very present and aware in my environment and a need to find ways to manage all that sensory input. As well as those everyday ‘non-important’ things I have a lot of Big Emotions too. Overwhelmingly so. I never just feel ‘meh’ about a conversation I’ve had; insteadI might feel overflowing with joy and excitement, giddy, utterly baffled orinfuriated. When I meet someone I immediately like or dislike them and,especially with the latter, then have to work very hard to put my initial assessment on hold and get to know someone. It will often take me a long time to unpick the subtleties of what I’m feeling and understand it as I’m usually initially just overwhelmed by its Bigness. It’s kind of like looking at a map of the world and being able to see big shapes and bright colours but not being able to read any of the words of symbols.
Access to joy
This partially comes under the “Strong Feelings” but it deserves a mention on its own because I think this is one of the best things about being autistic. I can find joy anywhere and everywhere both internally and externally. I don’t really get “bored” in the same way lots of people seem to because I don’t need something to do. Just being and thinking and moving give me so much. Looking at pictures of things I love can immediately transport me; I have a collection of postcards which I can look through over and over again. I can watch through scenes of movies in my head, often just the equivalent of a 10 second clip (that bit in ET where Gertie and ET meet for the first time and there’s all that screaming is never too far from my mind and brings me so much joy). I play with words and phrases in my head and laugh to myself, I wonder about and spot accidental and maybe ugly-to-most compositions of concrete, metal, road markings and colour in my city environment and feel full of light and beauty. Whilst I have a lot of people in my life who I love to spend time and share with I don’t need someone else to feel all this, and it’s pretty much always in reach.
Food is a consistent ongoing stress for me. It combines sensory issues, organisation and recognising and responding to my body’s cues. Sometimes the idea of eating a certain food that is usually fine will suddenly feel ridiculous and impossible. Sometimes I get restricted to only eating certain foods (cereal for every meal anyone?). Sometimes I really enjoy food, which makes it all themore frustrating when I’m struggling to manage all this. I find it hard to knowhow much I need to eat so eat to much or not enough and I also struggle with gastro-health in a general non-descript way which is probably exacerbated by all this and a partial cause at the same time. Going out for dinner with people to a place I don’tknow or can’t look at the menu for online is really challenging. If someonereaches to take something off my plate in a communal food situation, I can’t handle it because I’m probably putting a lot of energy and thought into processingwhat I need to eat and then someone’s gone and thrown in a variable out of my control.To summarise, food is hard, and messy metaphorically. If its messy literally too that’s probably going to cause me a few more issues!
This is a tricky one and perhaps is a lot more to do depression but the way I experience it is definitely impacted by autism and it’s very common for autistic people to have mental health diagnoses such as depression and anxiety. I can get very low very quickly, over time I’ve come to learn these drops are closely linked to overwhelming sensory input or a knock-on effect of having to work really hard to be around people in ways that feel unnatural to me. I can suddenly go from things feeling mildly stressful but manageable to desperately trying to will myself out of existence. This can then manifest into self-harm thinking or general impulses towards self-destructive behaviour. I’m at a point in my life where I’m not in danger during these times, I know how to look after myself and understand that it will pass. In this sense I think it’s maybe different to ‘typical depression’. My depressive type episodes are a direct symptom of dealing with the world as an autistic person.
I’m pretty good to have around in a crisis. If something bad happens, something with a big emotional impact, I won’t break down, I won’tneed to ask why or need immediate answers instead I’ll be able to simply lookat ‘what needs to be done’. I think this is possibly one of those things that feeds the autistic lack of emotion idea, but that’s not what it is. I often geta delayed emotional reaction to things like loss and danger. Here’s an example;a couple of years ago a member of my family attempted suicide. For me, and most around this person it apparently came out of nowhere. I spent two weeks looking after this person, partly alone, dealing with supporting the person emotionally, physically and logistically. I was able to do this whilst other family members went into denial, became too emotionally overwhelmed to doanything or just panicked. I don’t for a second think badly of those people for their reactions, especially because my not having those reactions wasn’t difficult or something I had to consciously think about; it’s just not how I work. A few weeks later, when things were settled down a little and I was back home, I was hit by all of the feelings all at once. I found myself unable to move for sadness.
This poem I wrote explains this one best:
under your guidance
I breathe light
shoots out roots
I never feel more content then when I’m alone with nature. I feel safe and comforted by plants, trees, animals, waves and rocks. I’ve call trees my ‘optimism catalyst’. Most of the times I remember crying in the last few years have been when I’ve been stood with trees and feeling like we’re part of each other.
Knowledge as lovelanguage
I recently read an article about autism* which described knowledge as a love-language of autism and the idea resonated strongly with me.When I talk about meaningful interaction for autistic people in my work I describe how autistic people often connect with people through sharing their experienceof the world rather than their experience of each other. Sharing knowledge,whether that’s talking about things I love, showing someone one of my favourite films or pieces of art, or interacting with them through something I’ve created is my main way of showing love and connecting with people.
Thank you for taking the time to read this article. Our ‘awareness’ month may be coming to an end but to all my fellow autistic people, auties and aspies I see and appreciate you all.