For a long time I didn’t really understand what the big deal was about being with other people. Yes, they could be funny, kind and interesting. But frankly, as far as I was concerned, I was already all of those things for myself. The other people bit, especially when there was more than one, just felt like a chore, something that was just part of being alive, something I had to get through so that I could be alone again. That might sound very sad to some people, they might think I’m describing a pretty lonely life, but to be lonely you have to feel like your missing something, and for a long time I didn’t. I had nature, knowledge and creativity and that was good.
As I got older things did start to change a little, I did start to want company, not all the time and I don’t think I needed it in the way a lot of my peers seemed to, but I did want it, want something. I had friendships throughout my childhood and adolescence, and these were really important and valuable to me but, especially as an older child and teenager, they often didn’t feel like they were mine.
Growing up autistic in a primarily non-autistic world means constant compromise. There’s the more surface level compromise; just doing things you don’t want to do or understand the point of, but don’t really hurt you in any way (in my case putting down a book or a project from time to time and looking at a person). Then there are the deeper compromises, the ones that aren’t always told to you, but you somehow learn. Suppressing the way your body wants to move, talking differently, learning how to answer people’s questions in the way they want you to and not the way that makes sense to you. Not looking too closely, not being too weird not being annoying or boring or repetitive. Compromises that, feel pretty one directional and ultimately just mean ‘be a different person’, don’t be autistic.
When you do this for long enough you lose the memory, the feeling of who you even are. It seems to be quite common for people like me, who get diagnosed or get an understanding of themselves as being autistic when they’re an adult, to go through a pretty significant change in how they behave. This can be in very fundamental ways like how they express themselves and how they relate to others. To the people around that person it may feel like the persons changing into someone else, but to the person themselves it feels like becoming. It’s just figuring out what’s your instinct, what inherent to who you are and what is the result of so much time and energy going into trying to be someone else.
I went through this, it was exhausting, and I’m probably not quite done yet. It’s been profound, confusing, overwhelming, sad and joyful. Often all at once. There are many things that have surprised me but perhaps the most significant of these was what was figuring out what was at the core of my lifelong confusion and difficulty with company, friendships and community. And it wasn’t that there was something just deeply wrong with me as I’d always feared. It’s actually very simple:
You can’t make meaningful connections with other people when you’re not being yourself.
Of course in practice it’s not simple at all. In the context of our culture and society it’s very difficult because the ways of being that are valued and held up as proper and even truly human tend to be very neurotypical ways of being (they also intersect with race, gender and class*). The way we’re meant to talk to each other, the way spoken language is held up as the truest way of communicating, the way we’re meant to sit and look each other in the eye, the things we’re meant to enjoy, how we should sit back and be entertained, respect a social hierarchy and value different kinds of relationships over others. And most poignant to me, the way we’re meant to play and experience art.
Access to communal space and experience is a matter of inclusion in the broadest sense. In my life I repeatedly see people who genuinely want to be inclusive, in their playgrounds, their classrooms, their community group, their theatres or art’s events. But they just miss the mark, they tick all the boxes for making spaces accessible but they’re not truly inclusive. And I’ve begun to recognise that part of that is they’re missing something from their understanding of what a shared or communal space or experience is. It’s can’t simply be a space to be with others, but…
A true communal space or experience is one where people can be themselves, together.
This means we need to acknowledge that for a lot of people in society that ‘being themselves’ isn’t something that comes easy. It’s also often not something they can do alone. In talk about how disabled or autistic people need to be ‘part of the community’ people fail to acknowledge that ‘the community’ isn’t a neutral thing. It didn’t form of its own accord with fixed rules and expectations. We all create and maintain them. And some people have more power and ability to influence this then others.
A true communal space is life changing. It’s motivating, it’s energising, it makes you feel valued. I feel it most when I spend time with other autistic people and feel free of needing to censor myself or change who I am. But I should be able to do this in the wider world too. I meet children who’ve maybe never even been able to do this, being with other people is still just something difficult, painful and suffocating. They are constantly compromising and it exhausts them. But it doesn’t have to be this way and i don’t think they should have to wait until their an adult to figure that out. We can work to create these spaces for them as well as ourselves. For me this is about my role as a playworker and artist in helping create these spaces with and for others. It’s also about giving myself permission to seek out those spaces for myself. For you it might be in your role as an educator, manager, arts programmer or maybe your role as a parent, carer, friend or neighbour. I hope reading this has reminded you or the value of that work and perhaps given you another way of thinking about it.
Connecting with people meaningfully means being able to do so as yourself. Creating a communal space means allowing people to be themselves together. How can you do this for yourself and others today?
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.
written about the importance of recognising and valuing different forms of
communication and the need for us to allow for expressive as well as functional
communication. In this piece I’m going to take a specific look at language as a
form of expressive communication and in particular what this can look like in
the play of autistic people.
For most people language as a form of expression is
something that is encouraged; writing poetry, prose and music is not only
valued and celebrated but considered an act that is essentially human. This is
often forgotten when it comes to autistic children where “non-functional” language
can get brushed aside by surrounding adults as not meaningful, worth listening
too or in some cases even seen as damaging to the child. But autistic people
should be allowed and encouraged to enjoy and play with language just as their
neuro-typical peers are. In trying to prevent this use of language we are
denying an individual a culturally and historically significant part of being
human. I would also argue that playing with language is one way in which it can
become meaningful to an individual. Therefore as people are most comfortable
and content when able to communicate in a way that is meaningful to them,
limiting this playing with language is only going to hinder their ability to
communicate and be heard.
Before I jump in, I want to define a few words I’m
going to be using in the rest of this essay, these are words commonly used by
autistic people, allies, parents and professionals alike. The basic meanings
people use don’t tend to vary that much but the way people approach or
understand each one does. These definitions won’t be exhaustive but will
hopefully give you an understanding or what I mean when I use these words.
This word comes from ‘stimulatory’ in
“self-stimulatory behaviour”. It’s not just autistic people who do this, but we
tend to do it particularly often and it can fulfil many different functions. We
also do it fantastically well. It can help regulate the senses, manage anxiety or
other difficult emotions, be a part of feeling excited or joyful or be done
simply because it feels good. Stimming usually takes the form of a repetitive
behaviour that engages one or more of the senses such as rocking, jumping, hand
flapping and humming.
This is a form of communication where someone repeats
phrases or words they’ve heard. It can be immediate; you might say to a child
“do you want to go on the swing” and they might say “swing” back to mean yes, where
another child, not using echolalia, might just say “yes”. Or it can be delayed,
with phrases or words repeated back moments, hours, days later. This could be
because they’ve been processing what was said during that delay, or they might
be using what was said before to convey meaning in that present moment. Either
way it might look like the child coming up to you an hour later and saying, “do
you want to go on the swing” and meaning “I want to go on the swing can you
There are two main kinds of scripting, echolalic scripting and social scripting, although they cross over. Social scripting is using learned or repeated phrases to navigate social situations. The kind I’m going to be talking about here is echolalic scripting which I would describe as where echolalia and stimming meet. People will use lines from films, tv shows, books, songs, conversations they’ve had or overheard to ‘script’ with. They may repeat long streams of dialogue or a short bit over and over. This can be for enjoyment, self-expression or as a way of engaging with someone. It’s common for people to draw on a bank of learned phrases or dialogue (‘scripts’) which they associate with a certain emotion or situation when they find themselves experiencing that emotion or situation.
Now let’s get into the serious play stuff.
Poop Jokes for
Of the 16 play types described by play theorist Bob Hughes, what
I’m talking about here fits best, although not quite snugly, into the category
of ‘Communication Play’. Hughes defines this as;
“play using words,
nuances or gestures for example, mime, jokes, play acting, mickey taking,
singing, debate, poetry”.
how some kids just love to talk about poop, sing about poop and call you a
poop? That’s a form of communication play. Ever had the pleasure of listening
in on a bunch of kids making up format-defying knock-knock jokes? Also
communication play. What about the kid in a corner talking to the puppet on his
own hand? Communication play! (also; me for the first year of secondary
school). When I talk about playing with language, I am referring to a kind of communication
play which, when seen through an autistic lens can fracture into multitudes of
shapes and forms.
In spite of their wonder and complexity these forms of playing with language often go unnoticed or dismissed; especially when the adult’s viewpoint is skewed by the “functional language only” bias discussed above. If a child who uses language isn’t using words to communicate in the acceptable or ‘correct’ way, then it can be presumed they are doing that out of ignorance. When actually, they may be using their words exactly as they intended, you just don’t have the tools to recognise or to interpret it.
To help with this, I’m going to take a look at
some of those shapes and forms of autistic wordplay that I’ve observed and experienced.
Talking as Stimming
Have you ever observed someone rolling a word around their
mouth like a gobstopper? Most recently a conversation I was having with a young
person came to a standstill as the word “booth” caught them. They elongated it,
dragging out the ooooh and shortened it, expelling it like a cough. They
altered the pitch wobbling it in the middle, smiled and giggled. This is where talking
can be a form of stimming; more about sensing than communicating. Try it now; take
a word and say it out loud, say it in your head whilst imagining saying it out
loud, mouth it, taste it, spit it out quickly, stick out your tongue with it
balanced right on the tip, almost falling… pull it back in, explore the entire surface,
look for hidden cracks and fractures, get inside and discover what it’s really
made off. Imagine doing all off this and not feeling silly or self-conscious,
imagine this being something that brings you immense joy and satisfaction and
then being made to feel silly or self-conscious.
As stimming can be used to fulfil a range of different needs
talking as stimming is not always going to be about play, but it can be,
particularly when the person stimming is relaxed and if they are happily responsive
to or engaged in someone else joining in. What may start as stimming as a
reaction to anxiety about being in a busy playground may become playful as it
enables the child to relax and then morph into a part of the child’s play as they
try out new words perhaps ones which relate to that which is happening around them.
A child may smile and squeal as another speeds past them on a scooter a little
closer than expected, and then beginning vocally stimming, saying ‘oh dear watch
out oh dear watch out oh dear watch out” over and over again. To an outsider,
based on the words and repetition alone, it may seem like the child is
distressed but actually it might be a humorous comfortable and playful reaction.
If the above scooter-scenario happened to
me right now I can guarantee my brain would shout ‘shocked and appalled,
shocked and appalled, shocked and appalled.’ Just typing this is making heart
is beating a little faster and a goofy smile appear on my face. It’s very
unlikely I would actually be shocked and appalled, but this phrase is something
my brain always goes too, likely because it amuses me. When I’m on a playground
most of the time I would resist saying this aloud but if it was a child I knew,
who also stim-talks I probably would, and it might become a playful exchange.
Anyone whose spent enough time around autistic people will
probably have had the same conversation over and over again. Or will at least
think they have. It might be exchanging the same few lines of dialogue from an
episode of Thomas the Tank or it might be lines that you’ve learnt from the
other person over time from an obscure sci-fi movie you’ve never actually seen.
Someone might have a set of questions they ask again and again to get the same
answers from you. Much like talking as stimming there is no one reason people
do this, but it can be a part of play or a way into play with another person. It
can also be a way to establish communication with someone to enable a different
kind of play, or an invitation to bring someone else into the script.
When at its most playful this kind of scripting becomes subtly
anarchic. You may find yourself in what you think is the same conversation but
if you pay close attention there are small changes being made, little
explorations and experiments. It may be the words themselves or the way they
are delivered. The more you get to know someone the more you might find you can
introduce a little anarchy yourself, you might change a word or mix in another
concept. If the other person isn’t ready for this, they may well ignore it,
that’s okay. A young person I know scripts with SpongeBob Square pants and a
lot of the time they will ignore if I try to introduce a deviation. But on occasion,
when they loudly sing “who lives in a pineapple under the sea” and I reply “Winnie
the Pooh” (to the SpongeBob tune) it stops them in their tracks. They’ll give
me a look that says; ‘challenge accepted’, and then we’re playing. We go back
to the beginning of the script, both curious about what’s going to happen next,
this time when I respond “SpongeBob square pants” it’s somehow funnier than the
deviant version. This can go on and on and build and build. Imagine phrases and
words as building blocks that are being stacked higher and higher in a tower; they
can be knocked down suddenly, pushed slowly, intentionally picked up and placed
upside down as an experiment to see if they will remain standing. The
anticipation of a fall and element of surprise is part of the fun, but so is the
different ways you can build, different colour and shape combinations. I’m not
quite sure how to cram humour into this metaphor. But that’s there too, some of
those blocks are real comedians.
For me this is the ultimate form of autistic word play. It can involve everything I’ve already written about here and so much more. It’s a perfect example of the idea of the sum being greater than the parts. The parts are those echolalic words and phrases, bits of scripting, intonation, pitch, speed, mutations, hums, shouts and whispers. The sum is a kind of audio-collage that contains all these parts but is heightened and expanded by the interactions between them. This can be solo play or collaborative. When it’s collaborative it’s neither monologue or dialogue but something else altogether. The player(s) will cut and paste concepts together, looping, repeating and rearranging. From the outside this might seem inscrutable or completely random, but it’s likely neither if you’re able to tune in; something that will take a lot of time, listening and detecting for most.
There are a few things that fuel this kind of play; sharing and exploring particular interests or ideas, making connections, playing with social conventions and expectations and humour. The interest is often what starts the play off; chat about trains, Dora the explorer, road signs. Things which may seem mundane to someone who doesn’t share that interest but are a source of joy and inspiration to the individual. The connections are made through that out of the box or unexpected thinking, referencing another interest in an unexpected way. Exploring and discovering connections between things is something that is pleasing to many autistic people. When it comes to social conventions, despite popular belief, it’s not always the case that autistic people don’t recognise social conventions, often they just don’t see the point of following them or doing so causes stress and discomfort. For a child who spends all day at school trying to follow other people’s rules that aren’t intuitive to them, coming up with different answers to the questions “how are you” and acting it out with someone over and over might be very enjoyable. Finally humour, perhaps the hardest thing to try and explain, because our personal sense of humour so intuitive. But there is definitely an anarchic, surreal and abstracted sense of humour that a lot of autistic people share and that can be a key part of this kind of play.
these are new ideas to you, well, that was probably a lot to take in. So I want
to leave you with a few simple things you can keep in mind to facilitate and enable
this kind of play and creativity.
A lot of people find repeated conversation, particularly questions
annoying. If you feel that way then that’s okay, you’re definitely not alone. What
is not okay is to treat the person who communicates and plays in this way as a
nuisance. If you can’t engage then find a way to be honest about that, it might
mean simply saying; “I’m sorry, I can’t do questions at the moment”. It may feel
blunt or insensitive but its more damaging to act as if the person has done
something wrong by ignoring them, talking over them or doing things like
rolling your eyes and tutting. Feeling like the way you instinctually communicate,
or play is wrong is extremely damaging to the individual. It’s also good to
remember that autistic people spend a lot of time adapting to the way non-autistic
people communicate and being expected to do so without question.
AAC & expressive
When someone uses a method of adaptive and augmentative communication (AAC), such as sign, sign assisted speech, pecs or a digital text to speech programme, the focus on making sure they use it correctly- where correctly means functionally- tends to be even heavier than with speech. Remember that they may use it for expressive communication too and they should be allowed to do this.
There’s a really easy way to engage and play with someone
who communicates using echolalia and scripting; learn what they are talking
about! It’s all already out there for you, often just a YouTube search away. Learn
who Patrick or Peppa or Dora or Oliver is. (pink talking starfish best pal of SpongeBob
SquarePants, Pig, Spanish speaking young girl with monkey friend, train friend
of Thomas). Seeing a kids face light up when they realise you understand
something about this world that they love and understand through is pure joy.
Language can be a tool of play as well as pure communication,
the term ‘word play’ is familiar to most of us, but the fact that it can mean
so much maybe isn’t. Next time you come across a chid stim-talking, scripting and
collaging… slow down, listen and see if you can tune in. If you’re lucky you
might even get an invitation to join.
It was a quiet chilly day at the playground and I’d been chatting with a fellow playworker about what to do with an underused and in-the-way wooden leaflet stand. I wasn’t feeling particularly inspired and was mostly coming up with overly complex ideas involving a box of wool I’d uncovered and been a bit desperate to use. Fortunately at this point a thirteen year old and master of too-cool-to-care conversation wondered in and I asked what he thought I should do with it. He looked at me with slight bafflement and, as if it were the most obvious thing in the world, said “put leaflets on it.”
In hindsight I see that it was the most obvious thing in the world, just not to my overthinking adult brain. I’m also pretty sure he was trying to sass me but he still couldn’t hide his enjoyment of my enthusiastic response. I grabbed a bunch of coloured card and pens, wheeled the stand out into an open space and set about making leaflets.
I amused myself for a while creating ad’s for missing ‘cats’, lost tooth notices and ‘bassist wanted’ posters. This attracted some inquisitive browsing and questioning but it wasn’t until a kid decided to make a ‘wanted’ poster for their brother that things suddenly took off, suddenly everyone was having wanted portraits made and bizarre rewards attached.
Image shows a wooden leaflet stand with multiple layers. The leaflets are all hand drawn on different coloured paper. There are several ‘wanted posters’, a leaflet for a missing “cat” which has eyes on stalks, a leaflet for a missing tooth and a couple with abstracted drawings.
The thing about this is it was far from a popular activity in the playground. But things don’t always have to be popular to be valuable. The kids who enjoyed it really enjoyed it. It the kind of play that appeals to a certain kind of kid. A play that uses the familiar as a jump of point, it’s a subversive kind of play, a bit like certain kinds of comedy, where you mess around with a vernacular or set of rules that are not yours but you know well. It’s also a very autistic kind of play, and perhaps the kind of play that you might miss if you’re not so familiar with the appeal.
As a kid I think my playfulness was often mistaken for seriousness, or not knowing how to enjoy myself. I remember being in primary school, probably about 8 or 9 and wanting to spend break time writing weather reports which I would then deliver stoically standing in front of an empty whiteboard to no one in particular. From an outsider it might have looked like I was in need of guidance or support interacting with my peers, and perhaps to a certain extent I did, but also I was having the greatest time amusing myself, I was playing, just, not in a way people recognised. The kid who delights in making fake leaflets might be looked at with the same confusion by well-meaning adults who just want them to have fun. As play-workers we can create opportunities to draw this subversive hidden play out; these might just be some of your most joyful and surprising interactions. Examples of this might be making nonsensical road signs, reorganising or creating ‘adult’ spaces such as offices or waiting rooms, or re-enacting scenes from movies over and over with the slightest whimsical tweaks nearly invisible to the outside-eye.
Image shows a close up of a leaflet stand with colourful hand drawn leaflets. One is a blue wanted poster which says ‘oof’ underneath, one is yellow with a pencil drawing of a robot and one is gold with a large tooth drawn in the middle and the headline ‘missing tooth’
Image shows close up of two leaflets in a leaflet stand, one says ‘Cars 2’ and has a drawing of a red car and the second says Used cars, like new, £5000 with a drawing of a very old damaged looking car.
The leaflet stand is slowly becoming repopulated with ‘real’ leaflets and family magazines but they’re remain interspersed with “Missing Flamingos!’ and “Wanted” children. I feel that it sits somewhere between art installation and play activity. I enjoy seeing it change over time, contributing to the playful atmosphere of the hall from its overlooked corner, a quiet reminder that there is nothing in this world too mundane to find joy and silliness in.
Hand holds white sheet of paper with the heading ‘missing flamingo’ in purple ink with ‘belongs to the yard’ written in black underneath. There is an excellent abstracted drawing of a flamingo with four stick legs,round body and one very large featureless eye.
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*.
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.