An Autistic Frequency

Interesting isn’t…

This next one often comes immediately after the previous one.  It has been known though, to make an appearance on it’s own.  Interestingly these two vocal Stims only occur when Quinn is content, happy or excited.  He does have a near constant state of higher anxiety than non-Autistic children, as do most Autistics, but i genuinely don’t think either of these noises are an expression of that.

Olivia’s Stim is very special.  

It’s important to understand that Olivia is a cat. 

Well… cats. 

I mean literally. 

She has a different cat personality for every occasion, each with a different name and personality, depending on the situation. We have conversations with her as a cat, we’ll speak in English and she’ll answer in her cat language and this can go on for hours. This happens at weekends and after school. 

Olivia is not a cat at school.

Olivia pretends to be a person at school. 

She draws cats though, only cats, the same cat every time in fact, maybe different colours or in different settings, but all of her pictures have the same cat on it, even down to the tufts on the ears (we have two Maine Coons, so the cat is modelled on them).

Olivia also likes to meow frequently when she’s happy and ‘not’ being a cat. This is her vocal Stim:

Recently we went to see Solo: A Star Wars Movie; and as the lights dimmed and the curtains rolled back I unleashed the Wookie – to be fair only the people sitting round me knew it was me, because it was pretty full, but it got some laughter and a scattering of applause, so i think it was fairly well appreciated!

I suppose it’s about time to talk about my other Stims.

My Nan’s flat smells of Lily of the Valley, it hits you like a punch in the face as you enter.

We’re picking her up to take her somewhere, my Dad has told me where, but I can’t remember. If it’s not important, if it’s not something I’m interested in, it doesn’t stick around long enough in my head for me to keep it there.

I fight my way through the smell like it’s a physical obstruction, my breathing shallow through my mouth, so i inhale as little of it as possible.

I walk into the Living Room/Dining Room/Bedroom; my Nan lives in a bedsit and it fascinates me that so many rooms are crammed into one: A bed, an armchair, a table, all in one space, with a tiny separate kitchen and bathroom; and a bizarrely enormous cupboard.

I’m terrified.

The smell is overwhelming, overbearing.  My Autistic senses are overloaded already, but it’s not that that scares me.

My Nan scares me.

She’s old.

She’s grumpy.

Her flat smells.

She smells.

She talks about God. A lot. I mean a lot…

I have to go visit her twice a week with my Dad, who just sits there and reads the paper while she preaches evangelical gospel at me and tells me all the ways that I’m Sinning. Yes, I’m four and already a Sinner.

Nan appears in front of me like she has some kind of teleportation power.

She’s dressed up for wherever we’re going. 

It’s a hot summer day but she’s wearing some super-thick, crinoline, hessian-like, blue and orange and brown, tartan dress,  thick brown tights and a hat that matches the dress, like some kind of cake perched atop of her head.

I’m wearing shorts and my favourite T shirt.  How I love this T-Shirt. It has Mowgli and Baloo the Bear emblazoned across the front, in a scene from the Jungle Book.  It’s one of those cheap 1980’s T shirts that don’t let your skin breathe.

But I love it.

I like the Jungle Book, I relate to it a great deal as a Four-year old already scared of the world, who already knows that he doesn’t belong.

The most important thing is that the T-Shirt feels nice; the material is smooth and it has the most amazing tag in the back.

I call it my Ticket and I stroke it constantly, the forefinger and thumb of my left hand always at the back of my neck. The constant motion, rubbing back and forth. It’s soft and smooth, cool, it feels good; it’s so comforting to be able to touch something that feels like skin, but isn’t skin, because skin burns.

My Nan looms over me.  Leaning in.

Her crinoline dress so thick and scratchy and starchy pressing up against me.

She moves lower, i wait for the inevitable kiss – the one that makes me curl up and die inside, the one that makes my skin boil and burn, like a branding iron of lips against my cheek.  Her whiskers like needles, a thousand stabs at once.

It doesn’t come.

She’s noticed my Ticket, she’s noticed me fiddling.

Her hands are at the bank of my neck rooting at my T-Shirt.

Her hands, wrinkled and dry are touching the nape of my neck, the top of my back – it hurts, it burns, but I can’t say anything, my throat is closed, I must look like I’m gasping like a fish out of water.

I look to my Dad for help and he’s sat reading the paper, no help at all.

She clutches the offending Tag in her hand, pulling it out at full stretch, the front of my collar pressed hard against my throat, adding to the tightness, restricting the words even further.  Muteness now coupled with physical restrictiveness.

“This is bothering you isn’t it.”

It’s not a question, more an imperative.

I feel my head nodding.

Yes.

Why?  Why did I do that!?  Why did I agree?  It’s not bothering me, it’s HELPING me!

I can’t control it, I’m still nodding, as she trips into the kitchen and comes back seconds later wielding a pair of scissors, scissors which, in my fear, look enormous, like incredibly sharp giant garden shears.

She actually snips them at me, close to my face, like some caricature cartoon baddie, SNICK-SNACK.

Her left hand goes to my shoulder and presses, probably not heavily, but it’s enough to make my knees week, to make them bend, to make me kneel at her feet; a four year old boy, subservient to some cartoon witch who is about to destroy the source of everything that makes me feel good and positive.

I still can’t speak.  

The Muteness which controls my words has taken hold, I’m verbally frozen; my arms go out sideways, my hands make a blinking motion, open and closing; fingers stretched wide and closed, wide and closed, over and over, faster and faster; and she pinches the Ticket between her thumb and forefinger in an unintentional mockery of my actions, the pureness of my repetitive movements, mirrored by her intentions.

She puts the scissors close.

“Don’t do that Mum, he likes it.”

The voice comes from close by, yet seems to come from so far away.

The scissors slip away, the weight of her looming over me retracts.

“I thought it was annoying him”  She retorts, haughtily, like she’s the one suffering from an injustice, her pride wounded.

“Nah Mum, he likes it.”  I could swim in his North London accent then, my Dad has rescued me.  Cut the head off the dragon just in the nick of time. 

I manage to look up at him, exhausted.

He’s still reading the paper.

I realise he’s never looked up from it once…

After that incident I never wore my Jungle Book T-Shirt again.  It retreated to the safety of my bedroom, to my bed.  Ticket became something that i slept with and carried with me on journeys, hidden away in a bag.

Do you know the funny thing?

Time has moved on and I’m grown up, married, I have children.  I’m lucky enough to have an amazing, supportive wife, who lets me write and support so many other people.

But the Jungle Book Ticket still exists, it’s in a box in my loft. 

Over time, as Ticket has worn away to the point where it’s no longer serviceable or is in danger of disintegration, it’s retired and there is a huge transitional shift as I search for and discover a new one.  I’m not a nice person to be around at times like that.

I still sleep with a Ticket, I still take it on journeys in my bag, i still have my hand in my bag rubbing my Ticket.  Still hidden away. Still secret. Still Masked.

Here’s my current one:

An image of a dark blue, slightly ripped T-Shirt with a grey Tag sticking out, on a white background

The irony is that when Quinn was born, I thought he might like one too, so we got him a Taggie, got his name stitched on it and everything.

An image of a colourful square of material with lots of tags protruding from the edges and the name ‘Quinn Carter’ written on it in red

Did he show any interest in it at all?

Nope, so guess who owns it now!

An image of a four year old white girl with curly red hair, wearing purple glasses, sucking her thumb and holding a green Taggie and a blue one.  A toy cat sits next to her.

I have my Ticket and Livvy has her Taggie (and she sucks her thumb).

Do we care?

No. 

Are we harming ourselves or others?

No. 

Does having them help us?

Yes.

Is it Socially Acceptable? 

Of course it isn’t.

So we stop doing them, or hide them, or replace them with some inefficient.

Often we learn to redirect our Stims, we have to cover them up, to hide them, to protect ourselves.

Part of this plays into the process of the under-diagnosis of Girls. Girls can often play into a Societal Role, so they hide in plain site unintentionally. Like the bookish girl, who quietly gets on with her work. Or the girl who hyperfocuses on Boy bands, or Make-up.

Girls can, like Sara-Jane Harvey described in the launch video for #TakeTheMaskOff, often redirect Stims into things like hair twirling, which again for girls is socially acceptable, but for boys would be seen as odd and would make them stand out.

This isn’t me stating that girls have it easier, they don’t at all, it’s more me emphasising the point that Autism shouldn’t and mustn’t be Gendered. 

I know many Autistic men that fall in to the Female Schema – myself included and equally many Autistic women that fall into the Male Schema; and equally many more that fit both or neither – so to say that a Girls ability to Mask is to blame for her not being diagnosed is an incredible act of both misinformation and over-simplification, because all Genders of Autistic people Mask and Masking is not solely to blame for the under-diagnosis of girls (The diagnostic criteria plays a huge part in that). 

To say otherwise is an act of victim blaming. 

A Girl’s ability to Mask is not the reason she has not been diagnosed; the inability of the Diagnostician to see through the Mask, or even understand that there is a Mask and the limited range of the Diagnostic Criteria, coupled with a plague of poorly educated Diagnosticians and Services, are the main reasons.

Equally, the reason for similar, if not worse rates of Diagnosis in Minority groups and among People of Colour is not solely or simply down to Masking abilities either.  The world is a lot more complicated than simple binary issues.

The redirection my Stims have taken, have not been fulfilling enough, have not let me release the pressures of life, nor have they allowed me to fully enjoy the pleasurable things.  I can equally imagine that the redirection of anyone’s Stims have had the same poor outcome. 

I have a big list of things I remember doing as a child, actually the more I’ve thought about this and the more I’ve explored my Stims, the more I have remembered of what I used to do and no longer do.

There’s an element of shame to it.

I know for a fact that the main reason I’ve never explored Stims, as someone who writes about Autism, is because I didn’t want to write this article and put it off, is because this is an embarrassing conversation for me to have.  Bring on the week about Burnout, bring on the mental health impacts – suicide, self harm, woo-hoo, that stuff is juicy to me as a writer, that stuff is deeply personal to me, that stuff is powerful.  But Stims, my Stims, have long been something of an embarrassment to me.  I don’t want people to sit next to me on a train and see me rubbing a manky old worn out T-Shirt.

Why?

Because I know their first thought will be “He’s a sexual deviant.”  It won’t matter that I’m not, that there is zero sexual element to it at all, that my finger and thumb stay firmly on the tag, which stays firmly away from anywhere erogenous.

I know Autistic people whose Stims have wandered massively over the line into Sexual Fetishism, but I am far from one of them.

So I am worried about what other people think.  I am concerned genuinely that a six foot tall man, with probably his eyes closed, or wearing dark glasses, rubbing the tag on a partly ripped, worn out T-shirt, is going to have his appearance and actions misinterpreted.

If they are, then the police will likely be involved.

My personal safety is at risk for innocently stroking a piece of material.

Heaven help me if i were to make a Wookie noise too.

Can you imagine then if you are Black and your risk of arrest, already exponentially higher, now has ‘behaviour’ like this added to it?  Especially if you live in a land of Trigger-happy police?

Can you imagine if you were from an extremely religious family or culture and you acted freely like this – what reaction would you get?

This then feeds into therapists who offer Behavioural Therapies.

People who feed their children ‘cures’ like MMS, Chelation, Turpentine. 

The parents who think it’s right that they can post pictures on the internet of their child being wrapped in a towel and pinned down across the laps of two muscly, tattooed men, with the child’s face etched in fear and Mum with a shit eating grin plastered on her face, furiously convincing herself that she is doing the right thing, because she has found a way that ‘works’ to brush her child’s hair – because otherwise the child would struggle and scream.

This is shame in action.

I can’t brush my child’s hair ‘normally’, because they are not ‘normal’.

I want to cure my child of Autism, because they are not ‘normal’

I want to put my child through potentially PTSD inducing therapy, based on the principles of animal training and a legacy of physically and mentally abusing children, because I want them to be normal.

I, as a parent, am ashamed of you, my child.

So I, as a child, am ashamed of myself.

Society doesn’t accept me, I DO NOT FIT IN.

So I, as an adult, am ashamed of myself.

Therefore I hide me. I hide me from you, to protect you from having to be ashamed of me.  I hide me from you, so you don’t noticed me and walk on by.

I hide me.

Stims and all.

Thanks world…

The mentality that Autism is a children’s thing plays into this shame angle too.

In a world where the only Autistic adults look like Dustin Hoffman and are busy fleecing casinos or working at NASA, we do not exist.

Not a day goes by when someone calls Autistic adults liars, or deals out the “You don’t look Autistic.” or “You’re not like my child!” lines. Much of that attitude is firstly borne out of this lingering thing that Autism stops when you hit 18 and also the fact that parents are not educated well enough to understand that they are often limiting their children, because many of us were like their child.

What do Stims have to do with this?

Part of adopting the Mask is a putting away of Stims, like a child who reaches a certain age and puts their toys away. They’ve grown up – the world has told them they don’t need childish things.

You’re an adult now.

Except adulthood is when you need those childish things even more than ever.

The world from a child’s perspective is an incredibly scary place because the child doesn’t understand it.

The world is even scarier as an adult, simply because you understand it more and realise that much of the safety nets we cling to: cultural norms, history, news, even borders, all the things that grease the wheel of Society, are all imaginary things made up by people, invented by people and over-simplified horrifically by people. Which is why most folk, shut their eyes and their ears to reality and allow themselves to be led like sheep.

At the end of it all, most people are, internally, collectively, still hiding in caves, huddling together for warmth, hoping the fire keeps the monsters at bay and equally waiting to be told what to do.

The things that we convince ourselves are necessary for existing, the things that sustain this narrative that we live in, are all built on a foundation of sand.

Most of it is unnecessary.

But its the unnecessary that stops Autistic people from Stimming, when Stimming is as important to the health of an Autistic person as breathing.

The perpetuation of what is considered ‘normal’, your perpetuation of what you consider ‘normal’, is literally killing us.

As i mentioned earlier, i have a big list of Stims from when I was a child:

I used to:

Rub the crown of my head on a rug in the living room of my Mum and Dad’s House. 

It was a creamy, light brown circular rug that had pieces of wool coming out around it’s entire circumference, so that it looked like a child’s drawing of a Sun, or a Lion. 

It was a woven wool rug, so the fibres were tight and felt a little rough.  There was good friction to be had.  So friction there was. 

I would get up on my hands and feet, my bum lifted off the floor; I’d tilt my head back until the crown was touching the rug, then looking like some bizarre crab (with fewer legs and no pincers), I would work my way around this rug, rubbing my head on it until my head was hot – I mean really hot. 

I’m surprised my hair didn’t catch on fire, to be honest.

Oddly enough I am bald there now, on exactly that spot.  Though the balding must be infectious because it’s spread to other parts of my head too!

I used to:

Hang upside down on the sofa.  Feet over the back of the couch, head hanging off it.  I’d sit like that for hours, watching TV.

I used to:

Furiously bite my lip, to the point where I would draw blood.  This one is interesting because it is a solely negative one.  That one came out when I was angry or frustrated, especially with another person, rather than over a task.

My negative Stim for task-related frustration was nail biting.  Right down to the quick of my nail until blood would form there.

I used to:

Rock on my feet, from back on my heels, up to the tops of my tiptoes and back again.  I’d spend hours doing this.

I also developed the occasional, hidden Stim as I got older.

When I was in my late teens I got my tongue pierced on a dare (Thanks Amanda – I know you’re reading this).  I actually loved it, once i got past the whole swollen tongue/eating soup and milkshakes for a month part.

It was set just far enough back that it wasn’t visible unless i really made it visible (opening my mouth wide or sticking my tongue out).  For years it was like my little secret from the world.  I used to rub it and tap it on the back of my middle two, lower teeth.  It probably sounds disgusting to whoever is reading this, but it felt so good.

I was devastated after i had to have a nasal operation and an unexpected, extended hospital stay.  I’d had to take it out for the operation and, by the time i got home and remembered, the hole had closed up.

I’ve often thought about having it redone.

Maybe now, in this spirit of rediscovery I should.

One Stim that I’ve never had to worry too much about hiding (aside from the slack-jawed, drool running down my chin moments) is water. 

I love water.  More specifically I love looking at water. Actual water, not a video or audio track of water. Even more specifically water that is moving through the air, such as from a fountain or waterfall.

The shape and flow of the water as it moves is hypnotic to me, the way light passes through it, refracting and bouncing around; the sound it makes as it tumbles down onto the stones or rocks below, or drills down into a pool, all these things are immensely soothing to me. 

Watching/hearing water gives me the same feelings that Stimming does, it has the same outcome for me, which is one of pleasure, satisfaction and calm, which is why i put it in the same category as Stimming. 

It’s not a behaviour, it’s not a movement i make physically, but it’s something i do that fuels the same release of energy that Stimming does.

A Stim that I have failed to hide for the most part, is the one i alluded to earlier, mentioned by my sister.

If you ever go out to dinner with me, take some super glue for your plates and cutlery, because my legs jig, big style.  I jig when I’m anxious, I jig when I’m excited, I jig when I’m bored, when I’m happy.  There is only one jig.  Well actually sometimes there are two jigs.  Like right now as I’m typing this, both my legs are going, they are alternating.

There are times when i have to physically keep my hands on my legs to remind myself not to do it.  But I like doing it, that’s the worse thing.  Other people don’t like it, which is understandable as their dinner is bouncing around the room, so i try to keep it to minimum.

There are more I could have included her, ones which may raise eyebrows, such as stroking cats and the noises I make when i do so; reading furiously, rubbing my hands together repeatedly, running my tongue along the back of my teeth and chewing the inside of my cheek; chewing my lip and biting the skin off of it, chewing and biting the skin right in the corner of my finger nails; along with the more obvious hand flapping, which i used to do as a very young child but distinctly remember being told not to do (I can’t remember by whom, I’m thinking my other Nan).

I even rock at times.  More now than at any other point as an adult.

I could write about my Dad, who was undiagnosed as I described in ‘I look back at my Parents and wonder: how did they miss me?‘.  I never noticed him Stimming until right until the end. As he gradually passed away and spent long periods of time unconscious and semi-conscious, his fingers worked and worked constantly, like he was playing the piano.

But to be honest, this has turned into a far bigger piece of writing than I ever thought it could be, let alone would be.  I genuinely thought this piece would actually be about sharing other people’s work on Stimming as I had nothing to say…

I always want to get to a part that I know I have been putting off, deliberately so.  When I write about certain topics i have to be in a certain frame of mind and mood. So, before i preamble any more, I think honestly now, this is the ‘actual’ reason I’ve never addressed Stimming at all:

There’s one Stim from my childhood that I’ve deliberately left till last, simply because it’s the hardest one to talk about.

I grew up in a council house (A house rented from the local council).  My parents and elder sisters had lived in it for a few years prior to me being born.  We never had any money and we spent all of my childhood hovering on or beneath the poverty line.

Because of this we had dated or second-hand furniture, or had to wait until my Nan, who I described earlier, was in need of some ‘Quid Pro Quo’ as a power trip over us – she gave us or paid for us to have something we needed, she made us pay for it in a thousand different ways.

We had a carpet which covered the downstairs hallway, the living room, the stairs and the landing upstairs.

Looking back it was horrific, very indicative of it’s mid-late seventies heritage.

It was dark brown and covered in light brown and orange squares and rectangles of all different sizes.

They were laid out in stepping stones.

You can probably see where this is going…

I knew where every single one of those ‘stones’ were.

I could walk that carpet upstairs and down with my eyes shut and never actually lay a toe across the line between ‘stone’ and the raging river that surrounded them, or the shark infested ocean, or the depths of space, depending on what mood I was in.

I would hop, missing ‘stones’ out, leaping from one to another coming up with a myriad of different reasons why I couldn’t step on certain ones.

That carpet was a million different universes, all punctuated with an exhalation of exertion as i danced from one ‘stone’ to the next.

It become one of the few things in my life that I could rely on.  I came home to it and, even as i crept into my Teens, that carpet was one gigantic Stim toy for me.

My life reached a point as I entered my fourteenth year that I was really, really beginning to struggle.  All the things I was doing without realising to self-regulate myself were failing miserably.

I was in the middle of major upheaval after losing my Granddad as I described in and to be honest I was flailing.  I wasn’t coping at school, it was too overwhelming; frankly it was destroying me.

In the midst of all this, one day I came home and my carpet was gone.

Replaced by some red monstrosity, flecked with green diamonds.

It turned out that my Nan in some act of arch-villainy had decided that we needed a new carpet and had convinced my Mother it was a good idea.  My Mum foolishly went along with the idea, she should have known it was too good to be true, at the last minute my Nan had decided to go carpet shopping with my Mum and Dad and therefore had had the final say-so in what she paid for.

Our house was decked out like a giant Christmas decoration and my carpet was gone.

My stepping stones were gone.

All my worlds and Universes that helped keep me safe were gone.

My hopping, my exhalation all gone.

I didn’t know where to put my feet, I couldn’t even walk on it because I felt like I was going to fall over.

Someone had seen grace to hand me the greatest Stim toy known to Humankind and then had, quite literally, ripped the rug out from under me and taken it away.

I don’t think that it’s any coincidence that several months later I tripped so far into extreme Burnout that I took the overdose that I graphically describe in How to Hide your Autism and An Autistic Education.

I still do the stepping stone thing.  I kind of redirected it into counting, that in itself developed into a kind of OCD behaviour – I know how many steps it takes me to go anywhere in my house and any deviation from those steps makes me freak out hugely.  So what was a positive thing, is now wholly a negative, which doesn’t make me feel better or good about myself, it actually makes me feel bad.

Some people reading this may think “But it was just a carpet!”, but in doing so you are dismissing the very fundamental needs of Autistic people. 

Our Stims are part of us, they are as necessary to the very core of our existence as breathing and thought are. 

Stims are part of our beating hearts and the ticking of our minds. 

This is why one of our biggest arguments, our strongest debating points against the use of Behavioural Therapy on Autistic people: the silencing of our Stims; is also one of our weakest and one of our most emotional. 

We can’t logic Stimming, it just is.

Our Autistic Frequency is the music of our Universe, humming and singing.  The dampening down or silencing of that music, our music, is the shutting down of a part of our mind, body and soul.

I’m going to let you into a little secret:

“Our music…”

Half the reason this article took so long to write is because the moment i started looking for and listening to old and new Trance tracks, my hands started moving, pretty much of their own accord. My fingers found the beat and rhythm impossible to ignore and started moving accordingly, my legs were jigging so fast.

Embracing Stims that I never realised were Stims, felt utterly incredible.  Moving in ways that I have not done in years, felt so good and surprisingly easy.

So often you hear late-diagnosed adults and even those who were diagnosed as children saying “I don’t Stim though.”  The answer to that is that either you do and you don’t recognise it, or you have spent your life Masking and have been suppressing them all this time.

It would be incredible if more of us that ‘don’t Stim’ started exploring why.

As I grew older and the Mask tightened on me like a Noose, when did i lose my ability to release, my ability to be inherently me, when did i cross a line that I have found so difficult to re-cross?

Maybe somewhere, deep down, but still tangible, it’s all still there, waiting to fully come out; a me that has probably never properly seen the light of day, but so wants to.

The euphoria that I once felt so long ago is luring me in.

The euphoria brought on by the need to Stim.

Please, if you know an Autistic person, or if you’re just a soul with a kind heart. 

Please help us create environments, help us to create a world where we can Stim freely. 

Where we don’t  have to wear these fucking horrible Masks that cause us so much harm.

A place where there is no such thing as ‘Social Norms’, where we aren’t made to shame who we are because everything everyone does is a ‘Social Norm’.

A world where Autistic people can truly be themselves, because we’re allowed to be us.

Because we’re allowed to be the people we were born to be.

Because we’re able to tune into our Autistic Frequency.

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Follow/search the Hashtag #TakeTheMaskOff

Christa Holmans, AKA Neurodivergent Rebel, What is Stimming?

Amythest Schaber with Ask an Autistic #1:

Amythest Schaber with Ask an Autistic #4:

Curiosity Rocks: