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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 Part 3: Wordplay

Previously I’ve 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.

In troduction

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.

Some words

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.

Stimming

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.

Echolalia

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 push me.”

Scripting

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.

In Play

[colourful line drawing showing two children, one is half way through saying “knock knock” and the other has just shouted “batman!”]

Poop Jokes for President

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”.

 You know 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.

[colourful line drawing with three variations of the same face saying ‘booth’. One looks up to the sky and whistles it, another sticks their tongue out and another shouts it]

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.

Scripting Anarchy

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.

[line drawing featuring a person in the corner with a concentrated look holding out a small building block. next to them towers a stack of different coloured blocks with scrawls on them.]

Audio collaging

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.

[Colourful line drawing of a person happily flapping their hands as different squiggles and shapes fly out of their mouth like fireworks. There is even a little surfer riding a yellow wave]

In Practice

If 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.

Coping with repetition

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 communication

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.

SpongeBob Who-Pants?

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.

In Conclusion

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.

Play Diary: Wanted kids and missing flamingos

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.

IMG_0824

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.

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.

IMG_0823

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.

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*.

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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.

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* 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.

Play Diary: Telling Stories

I know a child who speaks in headlines and snippets from stories of mischief and chaos. He mixes characters, plot points and slapstick action with highlights from days in his life. Though it may sound like a random collage it’s never outside of a certain rationality; rules and facts of life drawn from the workings of traffic signals, YouTube videos of flash floods and the strange things adults say and do. When you talk to him in the Now, ask him to do things, give him choices, and enquire about his day he is on alert. The more you ask of him the more panic can start to creep into his voice. He’ll answer in questions or in seemingly off-shoot statements. When you talk to him in his vocabulary of stories he relaxes, he hops, flaps and smiles. When you speak his language well trust forms and slowly but joyfully you move from telling him his own stories too creating stories together. What may look to an outsider like something repetitive and rigid is actually a very niche kind of play. We’re playing with building blocks made of phrases, actions and noises. Sometimes we’re rearranging them and introducing new blocks and sometimes we’re bringing out reliable structures and colour combinations, just enjoying them for what they are.

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A frequent ‘building block’ in our stories. Mr Bean sits waving from an armchair tied to the roof of an old green mini-cooper car driving alongside a green field.

 

I once created a story tent for a group of children in the corner of an open high ceilinged, drafty gym hall scattered with scooters, balls and rackets. For some children their playful spirit is like oxygen, a gas, it seamlessly grows and shrinks to fill and take over any space. For some it’s more like water, a liquid, in certain spaces it is still and unmotivated, stuck, but in the right environment it can flow effortlessly and spectacularly. Out in the hall these different kinds of children might not work together, some so much more naturally suited than others, but in this colourful cosy micro-environment different children could flourish together. Sharing and exploring this new space and its purpose created about ten magical minutes of joint play. They took turns as they told each other stories wrapped in blankets holding torches. Accompanying each other with drum rolls and scary faces. Three children sat up in a circle, one child lay at the back in the cosiest corner maybe listening and another sat to one side drawing zombies. But all experienced the space together or parallel to each other in their own way.

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The Story Tent: A montage of four photographs of a parachute den play space. The first shows the den from a distance. You can see it is built from two colourful parachutes hung together creating a high sloping ceiling. A comfy blue mat pokes out from the den. The second shows the inside. There is a pile of story and fact books on the mat. Loose pieces of fabric a piled up and a small drum hangs from the ceiling. The third shows a upright board within the den which has been covered in paper for drawing. Assorted coloured pens lie on the floor and you can see there are lots of drawings that have been done including one which says “beware of zombies!”. The fourth is a close up of a drawing which says “yard” in a blue cloud with red hand drawn underneath

In many ways these are two completely different tales of play but they both use the idea and tool of the story. Perhaps the most human product. The need to hear, read, discover and share stories seems to be universal. In play, stories have many uses, but the way I use them most is too provide structure. The idea of structure might seem to go against the ideas of play, of freedom of movement and imagination. But not every child can access that freedom with ease, especially outside their private environment. Forgetting this prevents us from recognising and allowing space for certain children’s play. For a lot of children I work with the world is a chaotic and confusing place, especially the social world which is so important in play spaces. To be able to play they must first feel safe which requires feeling able to communicate with those around them and feeling able to understand their environment enough to focus on something else. The first child I talk about above is a great example of how finding a shared communication allows for play, it not only makes him feel understood but allows him to understand me and creates the opportunity for me to be interesting. The following group of children were able to engage in a different kind of play when within an environment that made sense to all. It was the structure provided by stories that allowed for this.

The structure I’m talking about here isn’t a very fixed or elaborate one. A story has to begin somewhere, it has to be headed somewhere and there needs to be some form of conflict or point of multiple possibility. It’s simply something the child can jump off from and come back to at any point should things become confusing or overwhelming. It’s a part of feeling safe. I think we all use some kind of structure even if it’s just as a starting point, a way to transition into play. A lot of children manage this for themselves, others may need a little help or time to learn the skill for themselves. In my work I’ll often jump into play at a point where children are becoming distressed and/or someone is likely to come to harm, or when an activity is becoming to unsafe and I need to provide guidance. My way in will be bringing the play back to the original spark or idea, encouraging progressing, asking what’s next? What happens if? So this time machine, are you going backwards or forwards? Have you meddled in the past too much? You must fix it! What I’m doing is reminding them of the story, bringing them back to the narrative to help resolve conflict or find a new way forward.

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A time machine i often come across at work looks suspiciously like this supermarket trolley…

The act of telling a story is a way of providing a structure without boxing a child in. It provides a rhythm and familiarity that the child recognises allowing and giving permission for them to take control. This can work whether you are part of the story or simply providing the environment where it can happen. It’s a kind of ‘in-road’ to play when be able to play isn’t straightforward, for whatever reason that may be. Stories can take you anywhere.

 

Play Diary: Tubes, Tubes and Temporary Playgrounds

Hello and welcome to another play diary This entry will be bit of a flashback to those couple of weeks in the summer where I got very into a bunch of cardboard tubes. Hope you enjoy!

Back in the summer I got the opportunity to go into a local play scheme and run a play session for a bunch of kids/teens with varying needs and abilities. Not really knowing a lot about who I’d meet or what they’d want from me I decided to focus on creating a play environment rather than thinking up activities or games. I think about play spaces a lot and I find working in this way; creating the space for the play to happen, rather than initiating or leading the play myself, is always exciting and challenging.

Changing a space changes the way we move within it, we enter the space and it has new potential; when a familiar space becomes a little less familiar the rules and expectations for what we do in that space get fuzzy around the edges making new room for creation, mischief and discovery. We’d had a huge haul of cardboard tubes appear in the art room at the playground the week before and i’d been desperately excited to do something with them. This felt perfect; it was just a question of how many I could fit in a taxi with me.

On the day I arrived at a high ceiling-ed, kind of chilly, gym hall carrying several cardboard tubes, parachutes, plastic and inflatable balls, a large blue net, several ropes and a large structure I’d made using strong elastic and (more) tubes. I set about creating a temporary playground. I had balls hidden under a net, precariously balanced tubes, a bubble wrap bag filled with more coloured balls and a rope strung up from the top of a door to the bottom of a bench with movable parts attached. I was pretty happy with what I’d done and looking forward to seeing things play out.

 

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My first visitor was instantly drawn to a pile of loose tubes and began to build. I was super impressed with his patience and ingenuity as he problem-solved his way to creating the structure he had in mind. He wasn’t very flexible about what he wanted to create but was plenty flexible about how he would get there. Ten minutes later he walked of grinning without a glance at anything else in the hall. His work clearly done.

My next group were a young excitable bunch who wanted everything, all at once. The newly built structure was quickly dismantled and investigated in every possible manner, balls were kicked, thrown and pushed through tubes and in the shortest time the space looked completely different again. One child was enjoying spinning between moments of close inspection of the elasticated cardboard structure. I picked it up and he got inside with me and we span the entire thing around and around. I created a loop with a piece of spare elastic that I could stand in with him and spin whilst experiencing the pressure from the band around our lower backs. Another would not rest until he had exhausted the sensory potential of every object. I love to see this level of focus and exploration. Some played for a few minutes, some played the whole session and all played uniquely.

Throughout the day I saw the space morph between a place to run and jump or rock and relax. And although I was a little sad to pack up and leave I did it contentedly, feeling justified in the slight-cardboard-tube-mania that had gripped me for the last week.

Welcome to my “Play Diaries” series.  I do many, many things, but my favourite is being a playworker at The Yard Adventure centre in Edinburgh. The Yard is a fantastic and wonderful place;  primarily it’s a play service for young disabled people and/or young people with additional needs. We also run a public opening session every Sunday which i’m involved in the planning and running of. Here expect to find many messy, surreal and playful tales from the Yard and beyond! 

Check out my workplace The Yard and find out a bit more about what we do. It’s a fantastic organisation and place! Or find us on Facebook here!