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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.

Playful Communication #2: Permission

In play work we talk a lot about permission and in my role I definitely spend a lot of time giving it. Sometimes it’s something simple, just a “yes, you can use that” or “yes, you can climb that’. Sometimes it’s a more complicated “yes if” or maybe a “tell me more….” Sometimes children aren’t just seeking permission but guidance. Sometimes they come to the playground and just can’t stop asking permission because they’re not used to so much freedom. Sometimes someone might just want permission to talk and share something with you. A very common scenario, and a personal favourite, is when someone isn’t really asking permission at all; like when a child demands to know if they can triple back-flip of the roof of the shed or tip a bucket of water over your head. Usually this will be something they perceive as either risky or rule-breaking and often it’s a test of who you are and what kind of relationship they’re going to have with you. And, though it’s probably not going to be a straight up yes, with a bit of creativity it usually doesn’t have to be a hard no. Taking a child’s request seriously shows them you take them seriously and so respect and value their ideas. This creates a relationship where they’re more likely to share their ideas and play in a freer way. Of course the other side of giving permission is asking for it, and that’s what I want to explore a little more here.

Ask!

Imagine you’re observing a play session, you notice one, very determined child, chasing another holding a raggedy straw hat. The child being chased doesn’t look like they are having fun and they are starting to get angry. You walk over and figure out that the first child is trying to make the other wear the hat, the child doesn’t want to because it’s a super gross hat (you secretly agree; it’s always a super gross hat). You step in to explain to the first child that the other doesn’t have to wear the hat and it’s better to ask the other child and listen to their answer. Both children are upset but the hat-fiend apologises and you (forever a martyr) ask if they’ll put the hat on you. The first child feels confused though. Perhaps because yesterday, when they were upset because another child kept touching their hair, the grown-up said to ‘be nice and let them’ and when they go to grandma’s house they have to give her a cuddle before bed even though they don’t like how it feels.

Always ask. Adults often don’t ask children permission, and they should. Asking doesn’t have to be verbal, it might be using a symbol or a gesture or simply giving a clear opportunity to say no. Asking permission isn’t just important to your relationship with the child in the present moment, it is also part of a responsibility we have to model positive boundaries and good use of consent for that child as they continue to grow and navigate new situations and relationships.

Disabled children will likely have had regular contact with medical and healthcare professionals throughout their lives and so will be used to strange adults investigating their bodies and minds in a way that many non-disabled children won’t have. If they have personal care needs they will also be used to adults of varying degrees of familiarity attending these. This just makes it all the more important to be clear and conscientious about asking permission when physically engaging with a child. It is vital to respect the child’s person-hood and ownership of their body to enable them to distinguish between appropriate and inappropriate kinds of touch.

There is a troubling behaviour I see over and over again where adults think that it’s okay to invade a child’s space or touch their body. When I worked in a school with profoundly and physically disabled children I would often notice that supply teachers or new staff wouldn’t hesitate to touch a child’s head or shoulder or lean on their chair within seconds of meeting them, not even giving the child time to process that the person was near them. This would infuriate me, it’s almost as if the more vulnerable an adult would perceive a child to be the less need they would have to ask permission. This could be down to an assumption that the child can’t give permission or an assumption that the adult doesn’t need permission. I think in part this behaviour is a result of people not knowing how to navigate relationships where communication is non-verbal. Not knowing how to communicate with someone can often lead to ignoring or disrespecting their person-hood. But with time and patience we can always find a way to ask.

yes no sign

Two rectangles side by side. The first is green, it has a line drawing of a closed fist with arrows indicating in moving up and down. It is titled ‘yes’. The second rectangle is red and has an image of a closed hand with index, middle and thumb touching and then opening. it is titled ‘no’.

Establishing a ‘yes’ and ‘no’

In any relationship establishing a ‘yes’ and ‘no’ is key. When meeting a child for the first time this is part of my role as a play worker, it’s something I always prioritise, particularly as a lot of the children I work with may not say yes or no in the expected or simple way. In a play environment there are plenty of opportunities to do this. I’ve broken these down into four categories, although I’m sure there are many more.

  1. “Can I…?”

This can be a part of introducing yourself to someone, asking ‘can I join you’ when a child is playing or sitting somewhere can tell you straight away how someone communicates consent. If they say no, or walk or turn away, then respect this. It doesn’t mean they won’t want to spend time with you at some other point and if you respect their response in that moment they are more likely to want to do so. You might also ask “can I show you this” or “can you tell me about that”.

  1. Offering choices.

For a child who is maybe shy or who you’re unsure about how to communicate with; offering them a clear choice of something to do can be a fairly low pressure way to engage with. Make sure you keep the choices you offer simple and low impact. Use options that are visual and concrete rather than abstract. For example “Do you want to use this parachute?” rather than “Do you want to play a game outside or go to the art room”

  1. Expressing approval or dislike

Watching a child to gauge how they interact with and respond to an environment can give you indicators of how they may communicate ‘yes’ and ‘no’. This is perhaps a less direct method but for someone who communicates non-verbally you may need to think a bit wider about how to ask permission. Recognising how they express liking or disliking something can help with this. For example you may see a child wrinkle up their face and pull their head back when there is a loud bang. Later on when you approach them with a fluffy puppet they may wrinkle their face again, perhaps you could sit down within their eye line without the puppet and see how their body language changes.

  1. Asking someone who knows the child already

If you’re getting to know a child who has complex communication needs it can be helpful to chat to someone who knows them better. Just make sure you don’t take what they say as set in stone. Because every individual relationship is different. But finding out some basic information can help you avoid doing particular things that might trigger behaviours or make someone uncomfortable or scared.

Permission is an ongoing part of any relationship and works both ways. When asking permission you’re also giving permission to someone to say yes or no. You’re creating a space where they can have autonomy and feel comfortable to express themselves.

Permission in the Play Space

Permission and consent are key functions of communication and central to enabling free play. Permission allows a child to explore ideas and experiences, in the best kinds of play spaces children should feel that they already have permission to be themselves and should be encouraged to ask and seek consent from other children and adults in their joint play. As play workers, as carers and as adults it’s our responsibility to keep listening, observing and learning so we can create the best spaces and experience for children in our care.


My first piece in this series focused on shifting our understanding of communication as simply the imparting and receiving of information to communication as the way we share our worlds with each other. It has many different elements which include both ‘functional’ communication such as question asking or requesting things and also ‘expressive’ communication which we may use to share our emotional or sensory experience. I also highlighted the importance of de-prioritising speech as the main or most valuable way of communicating to better understand and recognise other kinds of communication and people who use them. If you like you can find that first piece here: https://playradical.blog/2016/12/09/playful-communication-the-joys-of-the-non-functioning/?preview_id=221&preview_nonce=6dd19bcf26

 

 

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.