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Autistic Nuances; A personal perspective

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

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.

[digitally drawn image of the top half of a face wearing glasses and a baseball cap looking up at an abstract composition of circles and lines. The image has a bright orange background with bit of blue, yellow and brown]

Strong feelings

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.

[digitally and poorly drawn image of E.T. screaming with hands up. The words ‘Pure Joy’ are written in blue arched above E.T. The background is yellow.]

Food

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!

Self-destruction

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.

[digitally drawn image, the background is dark grey and the image is made up of multiple overlapping arrows in black, grey and white pointing inwards to an empty spot in the middle of the image]

Crisis

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.

Connection withnature

This poem I wrote explains this one best:

under your guidance

I breathe light

my heart

shoots out roots

and anchors

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.

[digitally drawn image shows a simple figure with arms wrapped around the trunk of the tree. The person is smiling with eyes gently closed. ]

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.

* https://blogs.psychcentral.com/aspie/2019/03/271/

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.

Let me process my sensory processing

content warning: this post contains discussion of mental health and has self harm mentions

I’m a sensitive guy

When I say I’m Sensitive, I really mean it, in its most literal sense. Certain noises make me flinch and squirm, certain lights make me nauseous, and food is a textural minefield. Wagon wheels (a biscuit with chocolate and marshmallow- a terrible terrible combination) must have been on offer one week in primary school because they showed up in my lunch box out of the blue. I cried every lunchtime that week at just the idea of having to eat them. Ten years later I held back tears in a Subway eating a sandwich with two different crumbly textures that just didn’t work together. It’s kind of embarrassing being a teenager crying at a sandwich in front of your new uni pals. Especially when you can’t explain why and are not even sure if an honest explanation would even improve things. Little old ladies shaking tins and handing out charity stickers were a childhood enemy; to this day I still can’t deal with stickers, sticky labels and certain types of plasters (I’ve made a lot of progress with this one). Light touch can set off a jarring metallic sharpness that runs through my whole body, it can trigger a sudden intense anger and distress; a total mood killer. There is an ingredient in certain cosmetics and toiletries that I’ve narrowed down to being in ‘berry scented’ things, it makes me feel overwhelmingly nauseous and disgusted. I once dated someone who had a raspberry lip balm, it took me a while to figure out what was going on, but whatever the underlying reason, it turns out no one wants to hear “I really like you but sometimes kissing you makes me want to vomit”.

I could go on (and kind of want to because this is pretty therapeutic) but what I’m trying to get across here is that while sensory processing issues can be unpredictable, wide-ranging, bizarre and effect every area of a person’s life they can, perhaps most importantly, be intensely emotional. I’ve noticed that when we talk about things like sensory overload or challenging behaviours being a response to sensory stimulation we have a tendency to emphasise the physical side of things. Being hypersensitive to noise is often explained as being physically painful, and I’m not saying this is untrue, but for me it’s the emotional impact of noise that causes the most pain*.

img_0474

Sensory processing and mental health

Let me give you some context; I’ve experienced problems with my mental health for at least the last ten years (before that I don’t really have much emotional memory other than particularly strong points of distress or joy) I’m a chronic depressive, I have ongoing anxiety and occasional panic attacks, I have experienced intrusive and obsessive thoughts, this effects my sleep and tiredness levels, digestion and eating. This is just a part of my life and its okay, it really is, whilst these things are inseparable from my day to day life they are also not fixed, they change and I change. But as I’ve gotten older I’ve slowly realised how intrinsic my sensory experiences are too my mental health. And it frustrates me that had I understood and the people around me acknowledged that sensory issues have an emotional impact I may have had to struggle a whole lot less.

For example when I have been in noisy environment, particularly one with many layers of noise such as a pub or busy supermarket, and move out of that into a quiet one I will immediately feel relief but then following that will often fall very quickly into a depressive and sometimes even suicidal state. In the past this has manifested in compulsive self-harm and related behaviours. It’s taken me a long time to recognise this as a pattern but now I can try to manage this in a healthier way. I can’t always prevent or avoid this state but I can understand it and take steps to look after myself. This is when I haven’t even got to the level of what I’d describe as sensory overload. When I hit that level I just stop working. My thoughts can’t organise themselves, I can’t speak or communicate properly, it can feel like I’m internally screaming, I feel helpless and all I can do if just desperately try to will myself out of existence. The comedowns from this are usually slower to happen but can last a lot longer. It’s very rare that I hit this level but I’m constantly aware that I can and the constant low-level stress of existing in an unpredictable world like this can be just as damaging as those moments when it peaks.

Lack of Control

So there’s that immediate emotional impact but there’s a more subtle long term force at work; the emotional impact of an ongoing lack of control. It begins with being a kid and feeling constantly on the verge of distress, you don’t have the communication skills to explain what’s going on or even the ability to understand it. You probably just have very strong ideas about what is okay and what you desperately need to avoid. You create games and rules to try and control these things the best you can but they never work all the time. Not only can you not control the environment around you but you also can’t control your own reaction to it. You keep trying and as you get older you develop new coping mechanisms, these have different shelf lives, some things might work for days, some for months, years. You have different options, you can become the centre of the universe as you know it, from this point you can make the most noise and draw the most attention and gain control over your environment that way. Or you can withdraw and create a smaller world that just has you in it. Either way you still can’t find sensory balance that other people just don’t seem to need to think about it. It’s a mystical superpower because no matter how hard you try you feel under attack from the world and you keep crashing. You might find it difficult to connect with others, go to new places, and do new things because you’re constantly working to keep your mind and body safe. No experience stands alone, they all happen in the context of both your memories and current emotional state. The impact this has had on me is huge and I meet so many children who seem to be experiencing something similar.

Why am I telling you all this

We all work every day to find balance between the information our senses are constantly receiving and the energy and time we put into understanding and reacting to it. For some people they never have to think about this, it more subconscious behind the scenes kind of stuff, for some it may occupy every moment and use every resource they have. I see this in children I work with who have to limit and control their every experience in order to function or children who find their way through the world using repetition and constant sensory stimulation to create predictability and safety. My experiences is neither of these but it’s also not fixed and will change.

I’ve focussed on hypersensitivity to noise in this article because it is very common amongst people with sensory issues and is perhaps the most widely acknowledged cause of sensory distress. This may be because its impact can be particularly obvious and the problematic stimulus is often easy to identify for people outside of the experience. Effective interventions can be pretty easy to achieve by either removing the noise or changing the individual’s experience of the noise through the use of headphones, white noise, ear plugs/defenders etc. However unlike something like sensitivity to different food tastes or textures where the individual can control what they eat, you can never have full control over what you hear. And this becomes more problematic the more someone goes new places, experiences new things.

I strongly believe the emotional impact of sensory issues needs to be acknowledged and explored; especially by those in caring roles such as mine. Sensory processing issues are super common in people who are autistic, have ADHD, learning disabilities and/or fit under the umbrella of neurodiversity but they are hard to understand. Because of this we often look at them in a simplified way, for example, thinking if you simply get rid of a noise that was distressing someone then that experience is over for the individual. Now there is ‘no reason’ for them to behave in a way you find challenging. We need acknowledge the broader impact of these experiences if we want to support people kindly and effectively.

Let’s let people be complicated and be willing to not always understand but to keep trying. And if I ever appear physically repulsed when you offer me food, please try not to take it too personally.

———————-

* I want to note a couple of issues at play here. Firstly the idea of pain being either physical or emotional is false. Pain is complex and I don’t believe it is ever solely physical or solely emotional and to force this separation is to oversimplify and ignore parts of an individual’s experience. Secondly with this in mind, we broadly consider physical pain to be more legitimate or important than emotional pain. Again I don’t believe in this idea and will be writing more on this issue in the future.

Playful Communication: the joys of the ‘non-functioning’

“Communication is about our ability to share our lives with other people”            

Working in play, particularly in disability and additional needs settings, has blown open my understanding of what communication is. The quote above from therapist and author Phoebe Caldwell is, to me, is the best explanation of where I’ve landed. Most definitions of communication I see or hear focus on the imparting and receiving of information, they usually also mention speech and writing as how this can be done. I’m not suggesting these definitions are invalid or wrong, just that I feel they largely miss the point; sharing. Our communication is the reason we are able to exist alongside each other and the effectiveness of our communication is what determines how harmoniously we are able to do this. It’s not just the imparting and receiving of information that makes up communication, it’s that bit in the middle, the bit where you are existing in the same moment as another person and choosing to explore that together. That’s where the truth and joy of communication lies, not in the mechanics, in the sharing.

keith-haring

Painting by Keith Haring

Speech is so often prioritised and seen as the ultimate way of communicating, and, that’s because for many, it is. Speech seems to come fairly naturally to most and from what I understand feels natural too, easy and satisfying. But not for everyone and if you take anything from this post I hope it’s this; speech is not the only way, the best way or the most ‘human’ way to communicate. When I’m able to communicate with someone without speaking I feel at my most content, connected and understood. People often mistake quietness or lack of conversation as a lack of things to express or desire to communicate. That’s not true, it’s perhaps just that talking, to them, is the most natural way to communicate and connect with people and therefore they assume, to everyone. I can speak, often very well, but talking often feels like a means to an end rather than an end itself, it’s for that ‘functional’ bit of communicating rather than that expressive, joyful sharing bit. Writing is different for me, when I’m writing in a way that feels natural it feels much closer to drawing than speaking.

De-prioritising speech is especially important in my line of work. A lot of the kids I work with don’t speak, can’t speak or perhaps speech just isn’t a form of communication that comes natural to them. That’s not to say speech isn’t important or useful, just that it is a way of communication that has no more or less value than any other kind; the way we jump or rock, the noises we make, images we create, the faces we pull, the way we move through and change our environment, the pauses we take to breathe and be, sharing touch and laughter and any other way you can think of that allows us to express ourselves. When kids face challenges in their ability to communicate we put a lot of emphasis on teaching and enabling them to communicate functionally, in doing this we also need to remember that a person’s inability to communicate is equally our inability to understand them. Whilst we create tools and put time into giving a child a way to ask for the toilet or a snack we also need to take the time to notice and respond to all those kinds of communications a person uses as they try to share their world. Ignoring these or dismissing these as less important than that ‘functional’ communication can cause us to isolate people in our attempt to understand them.

One of the many reasons I love working in play is that the play space is an environment where different forms of communication are already valued and recognised. It’s allows for, encourages and often even priorities those non-functional or non-verbal communications. In this way it creates a beauty and authenticity I think we could all benefit from if we took the time to explore it.


Phoebe Caldwell is an author and practitioner who works with people considered to have severe communication difficulties. She uses the technique ‘intensive interaction’ and has written extensively on the subject. Here’s her website where you can find more information including information in ‘easy-read’ formats; http://www.phoebecaldwell.co.uk/