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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.