#AutismAcceptance/#AutismAppreciation Doodles ‘n’ Scribbles, no. 26: post-meltdown rainbow/star stim-doodle

A doodle, in portrait orientation, of five-pointed stars outlined in black fineliner pen, and filled in with colouring pencils in rainbow colours. Some stars overlap others, and they vary in sizes.

This image is much more overtly a “doodle” than some of my others. I started it in a manager’s office at work, where I’d been give some space and time to recover from a severe crying meltdown in response to some bad news, delivered some six months ago. after a period of uncertainty.

I see it as being more of a stim than a piece of art. The repeated stars somewhat irregular in position and size but nevertheless predictable in shape, the comfort and reassurance of a palette restricted to seven colours, albeit bright and cheerful ones, but in muted pencil instead of loud pen – all these things served to soothe the pain of my shaken, chaotic senses and emotions.

Plus, rainbows and stars. What’s not to like?


[Image description: a doodle, in portrait orientation, of five-pointed stars outlined in black fineliner pen, and filled in with colouring pencils in rainbow colours. Some stars overlap others, and they vary in sizes.]

Advertisements

On meltdowns

The other day, someone on Twitter – an autistic person who doesn’t experience them – asked me what it feels like to have a meltdown. It’s not a subject I especially like talking about – I’ve attempted to write about it several times on this blog, got frustrated, and given up.

This past week, I had one of the most distressing, disorientating, debilitating meltdowns I’ve had for quite some years. Three days after it happened, I’m still exhausted. But the immediacy and severity of this recent experience gave me the language to tweet a thread about how it feels (for me at least), and it appeared to be something others found useful, so I’m expanding that string of tweets here, so it may reach a wider audience.

Bear in mind here, every autistic person’s experience is different. The following words do, however, give an illustration of what a meltdown is like for this particular autistic writer.

I’m an autist who experiences long build-ups to meltdowns, and I’ve discovered that this isn’t true for everyone. Some of my neurosiblings crash without any prior warning – or, at most, an hour or so of feeling like something is imminent. Perhaps it’s my anxiety. Perhaps my senses of introception, introspection, and the fact that I am by nature highly self-reflecting and -analytical. Whatever it is, I can usually tell I’m “due” a meltdown, even if I can’t quite tell exactly when. That uncertainty only adds to my anxiety.

It’s usually preceded by a few days of feeling “fizzy” – like a cola bottle that’s been shaken up but the lid’s still tightly on. Often in these periods, I need to stim a lot. Huge, exaggerated, full-body stims. I’m one of those autistics who pretty much stims 24/7, but these are bigger. I need to sway, rock, spin, vigorously shake my hands, windmill my arms, swing my legs, stamp, pace, clap.

If I can get out and properly exercise, I can sometimes keep the bad stuff at bay; if not, the pressure continues to build.

Usually, when I’m approaching the Actual Meltdown, I feel like everything is amplified. Especially human voices. They feel dramatically louder than normal. It feels as if everyone is shouting DIRECTLY INTO MY EARS. The sound of humans shouting is one of my biggest anxiety triggers anyway. It’s a sound that instantly sets my heart racing, stiffens my shoulders, and puts me in fight-or-flight mode.

But all speech feels like shouting when I’m approaching or mid-meltdown. And I have this sense, also, that everyone is speaking in a different language.

This “foreign”-ness is only one small part of a much bigger, more complex sense of dissociation. I feel like I’m not entirely there, like I’m in a parallel universe, but the one everyone else is in is visible to me. I’m immersed in it, without being in it. And yet, touching or interacting with anything in that universe feels as dangerous as being exposed to Kryptonite.

The build-up keeps happening. Everything gets louder. Bigger.

Closer, and yet at the same time more distant.

And then, something – one final thing – will cause the crash.

The biggest thing is crying. I’ve always been a cryer. I don’t cry at the things other people cry at, but cry at things other people don’t cry at. But my meltdowns pretty much always involve uncontrollable crying. They always have done, from childhood, through my teens, right the way through my adulthood, and that’s still the way things are today.

I feel my face getting hotter, my body starting to tingle, the tears forming. Long before it happens, but still utterly unpreventable.

There’s an embarrassment-in-anticipation. I know I’m going to be the Crying Adult. And then the waters break on the shores that are the cheeks of my face. And then the waves keep crashing in.

If the final trigger (bear in mind: the trigger of a meltdown is simply the last straw, not the sum total cause) is something a particular person has said or done, I’m likely to swear, berate, and shout at that person. I hate this. I hate being unpleasant to people. So not only must I endure the devastating embarrassment at the meltdown itself, there’s the all-consuming guilt about possibly upsetting someone.

In these times, I feel utterly terrified. Completely and utterly shocked, Every. Time. It. Happens, by my complete and utter loss of control. If anyone tries to interact with me, touch me, or even get anywhere near my personal space, I will shriek, screech, and flail my arms. I’m terrified by the invasion, the intrusion. The interaction itself highlights to me that I’ve drawn attention.

And yet I cannot use verbal language coherently enough to explain.

But I’m tortured because whilst I don’t want to make a scene or have strangers adding to the overload and overwhelm, I’m simultaneously desperate for someone to give me a massive, firm, bear-hug. To hide me, cocoon me, and shield me from the shock waves that travel from their universe into mine.

Whilst I nearly always cry, sometimes I don’t swear, scream or shout. Sometimes I simply need to run. Get out. Get away.

But even when I do this, the inner storm rages on until it blows itself out. The parallel universe that is not my own still exerts its extreme pressure upon me.

But eventually, it subsides. And then I’m spent.

All of this exhausts me. I will always need to lie down. Usually I’ll need a lot of sleep. Quiet. Darkness. And the next day, I’ll usually feel similar to how I feel the day after a migraine. Completely wiped out.

Often, I will actually get a migraine. All of this is neurological, you know.

And yet, I know the meltdown was necessary. The lid had to come off that cola bottle.

Meltdowns are hideous. And they are not the same as temper tantrums.

They’re not behaviour; they’re a neurological reaction.

A reaction to too much.

Too much change.
Too much surprise.
Too much information.
Too much stress.
Too much stimulation.
Too much worrying.
Too much interaction.
Too much time spent making oneself “acceptable”.
Too much time without sleep.
Too much energy expended.

And this is the same for autistic children and autistic adults.

The neurotypical world is hard for us. There’s much that I love about my brain, and being the way I am. But know this: we have to work hard every day to exist in a world that isn’t our own.

And so, if you see an autistic person who is experiencing a meltdown, be gentle with us. Give us space if we need it.

We suffer enough at unintentionally becoming public spectacles. Even if you don’t understand it, be compassionate. So don’t gawp. Don’t point. Don’t stare. Don’t ridicule, berate or attack us.

Don’t punish us.

If you love and care for an autistic person, notice when things seem to be getting too much. Don’t express unreasonable demands or make any but the most necessary of changes. Keep the environment as gentle and calming as possible.

And if they do come crashing down, give them time to rest and recover afterwards. They will be worn out. Emotionally, mentally, and physically. Look after them, but respect them.

And overall, be kind.


[Featured image description: a line-drawing of a white female-presenting person with chin-length hair, wearing a winter coat with fluffy cuffs and collar, holding their hands over their ears, eyes closed, tears running down their cheeks. They are surrounded on all sides by a mess of dark, painted colours, which appear to be closing in on them.]

Sweet abandon

Three silhouette figures, one adult and two children, dancing, surrounded by swirling colours and musical notation.

[Trigger warning: mental illness; self-injurious stimming (as well as the good stims that are hard exercise and dancing).]

The Saturday just gone:

So it’s happened. I’ve finally realised that I am definitely properly depressed at the moment.

I’ve thought I was, then thought I wasn’t; thought I was, thought I wasn’t. For a while now. I kept thinking my quick bouts of misery were a symptom of autistic burnout, or simply an acute pang of painful response to the occasional sudden rise in the immediacy of The Problems I Am Dealing With Right Now; something unexpectedly looming large on the horizon that sees my legs crumpling beneath me as I tumble to the ground.

But actually, these acutely painful moments have been mere spikes in overall negative emotional noise level. The low-level hum of depression, sometimes infrasonic, has been gently oscillating along in a line beneath the crashing noise of all of my day-to-day experiences for a fair while, without me properly registering it. But now I have. The pitch and the volume have risen, and it’s too loud to ignore. Is it a moan, a whine, a whistle, a hiss, or a wail? I’m not quite sure. But it’s sustained, and it’s loud.

Saturday morning. My daughter is watching a film in the living room downstairs. My husband is sleeping in. My son and I are in the big bedroom, playing with Lego. I watch him, I interact with him, and all the while I feel simultaneously both utterly nothing and utter despair.

I’m not quite fully there.

Later, my daughter joins us. The two of them both at work with the Lego; absorbed, building; each doing so in their own age-specific, personality-specific way. I interact with these two beings whom I love more than anything in the world, but I am removed. I am exhausted.

Then the wooden train set comes out.

Somehow, most of it ends up not on the floor of the bedroom, but outside the bedroom door, on the landing. Right where it’s a large, jumbled collection of small wooden trip hazards at the top of a very steep staircase.

I repeatedly ask my children to tidy the pieces up, or at least to carry them through the doorway and into the room, away from the stairs. They can be pretty good at tidying up. Sometimes. And I need them to understand why leaving toys on the stairs isn’t the best of ideas.

But they’re too intent on what they are doing. They don’t even hear me.

My requests get louder and more urgent.

(I still remember to use the word “please”, however.)

Still they are oblivious.

Eventually I lose it.

I scream and shout. I disappear into another room to smack my own head repeatedly for 30 seconds or so, before returning.

Afterwards, my husband finds me sitting at the top of the stairs, glum, despondent, detached. I burst into tears, and struggle to stop.

***

We agree that although I’ve promised our daughter I’d take her to the school Christmas Fayre (and it has to be me who takes her), afterwards I can go off and do my own thing for a few hours. I plan a trip to the gym.

Husband takes our son with him on an extended shopping trip. The girl and I do the Christmas Fayre thing.

She does a few messy crafts, a find-the-word treasure hunt, and eats too much sugary stuff. I try not to get too exasperated with the busyness and loudness of it all, but she loves it. And I love that she loves it. She has fun, and comes home with me, happy.

And I disappear off to the gym. I exercise with sweet abandon.

60 minutes of “Around the World”: a random-generated programme of hard hills and sprint intervals on the stationary bike. I sweat. My heart thumps. I breathe. I focus. And although I never exercise wearing headphones or earbuds, the hi-NRG dance music on the gym stereo this afternoon works well to keep my legs pounding. On the hills, I push down the pedals in time to the beat. During the sprints, I do my best to beat the beat, spinning my legs faster and faster. I lose myself in movement, beats, vocal samples, distance log, timer, calorie counter, and revolutions-per-minute.

Core work, stretches, home. Food on the table.

And then, the thing that I need perhaps even more than the gym.

It’s Saturday night, and my daughter wants to dance.

***

I’m glad that we’ve resurrected our living room discos. When I was pregnant with her brother and got too big, too much in pain, and too uncomfortable, we stopped. And for a long while afterwards we didn’t do it. But over the past few months, we’ve started dancing again.

And tonight, I dance with sweet abandon.

We always start with the same sequence of four tracks: ‘Nice Weather for Ducks’ (Lemon Jelly); ‘Treachery’ (Kirsty McColl); ‘Brimful of Asha’ (Cornershop – Norman Cook Extended Remix); ‘Squance’ (Plaid).

Whatever else we play in the middle (eclectic, but still very much the playlist of a ’90s indie kid), we always slow down and end with ‘Cole’s Corner’ (Richard Hawley). My daughter likes it that way.

For a while this unvarying start and end to our playlist used to grate (and I’m sure it still does with our neighbours). I have so much music. There’s so much of it my children haven’t yet heard. So much more variety than they’re ever willing to hear. I want them to enjoy it all.

But really, I don’t mind the repetition. It’s comforting to my daughter, and after all, I was the one who introduced these songs to her.

Tonight, I’m relieved to hear them, in the specific order we always play them. And whatever else is lurking in my collection, the songs we tend to play are the types of song that make my kids happy.

My “style” is a flailing mix of mangled Street Dance, distorted Twist, skewed Salsa, and a whole lot of jumping, hopping, twirling and swaying.

Sometimes I pogo. Sometimes I waltz. Sometimes I bring in body-weight training moves from the gym. Sometimes my daughter and I join hands. She grins. My little boy weaves between our legs, spins around, stomps his feet, and giggles. During ‘One Step Beyond’ we all run repeatedly around the room in a big circle. My children laugh and smile.

The physicality is all. My very being craves it.

I was already sweaty from my gym exertions. And now I sweat again. I don’t stop. There’s no point, until all of us are ready for it to stop.

Sometimes, I let my body fall from side to side, catching myself by engaging my core or gripping a piece of furniture before I land. Everything moves. Everything must move.

My body loses itself in sweet abandon to the music.

Even as my children slow and tire, I carry on (for a while, at least – I’m not so divorced from their needs that I can’t tell when it’s time to bring things to an end).

My little boy watches, content but approaching sleepiness. My girl intently examines the Pete Fowler designs on some Super Furry Animals CD single cases, still listening to what’s on the stereo, still requesting more songs.

And eventually, it is time to stop. We slow things down. ‘Cole’s Corner’ has its spin, and I, the sweating, panting, dishevelled beast that I am, cuddle my children close. They smile again – at each other, at me, to themselves.

It’s story time. And soon it’ll be bedtime. I’ll cuddle them close again before they go to sleep. Later, I’ll shower and crawl into bed myself.

And no matter how desperately sad I was that morning, when I finally lay my own head down later that same night, I go to sleep replenished, nourished, and filled with love.


Last Saturday’s playlist

  1. Lemon Jelly, ‘Nice Weather for Ducks’
  2. Kirsty McColl, ‘Treachery’
  3. Cornershop, ‘Brimful of Asha’ (Norman Cook extended remix)
  4. Plaid, ‘Squance’
  5. The Bees, ‘Chicken Payback’
  6. Beck, ‘The New Pollution’
  7. Belle and Sebastian, ‘I’m a Cuckoo’
  8. Bassment Jaxx, ‘Good Luck’
  9. Madness, ‘One Step Beyond’
  10. Madness, ‘Baggy Trousers’
  11. Super Furry Animals, ‘Golden Retriever’
  12. Super Furry Animals, ‘Northern Lites’
  13. Eels, ‘Last Stop: This Town’
  14. Richard Hawley, ‘Cole’s Corner’

[Featured image description: Three silhouette figures, one adult and two children, dancing, surrounded by swirling colours and musical notation.]

I hate asking people for stuff.

I have a problem. I’ve had it most of my life. I’m scared of asking people for stuff.

I’ve written before about my love of Dr Martens boots. What I’ve never mentioned before is how long it took me to actually work myself up to asking my parents for my first pair. Everyone at school seemed to have some. Black, of course. And I desperately wanted a bottle green pair. 

I played through the phrases I would use to make the request. I felt sick. Short of breath. Tense. It took weeks, but eventually I asked them, and they said “yes”. Pester power of a teenage child? Perhaps. But that teenager expended so much nervous energy mustering up the courage to (mildly) pester. And besides, the boots lasted me years. They were a worthwhile investment.

What the hell was I scared of?

To this day, I have never, ever asked anyone out on a date. I don’t have to worry about that any more, of course. But whenever I “fancied” boys at school (is “fancy” the right word? Reflecting back, my crushes were almost always of a romantic rather than a sexual nature), I wanted them to know, but would never have told them. Given how “weird” I was perceived to be, I assumed I’d be rejected.

I’m not sure what it is about asking people for things. I think it’s a combination of factors. I’m less petrified at the thought of making requests by email, so presumably verbal communication is one of the issues.  I’m scared of people saying “no”, and I’m scared of my own reaction when I’m there in front of someone. Oh so often, receiving bad news reduces me to crying meltdowns that seem woefully, hugely disproportionate to the situation at hand. I’m terrified that if I get the wrong response, I won’t be able to control my reaction. I’m worried that I’ll get into an argument, and that I’ll be unable to respond quick enough, and rationally enough, in a real-time, verbal one-on-one duel.

Making requests in writing, and processing any responses given in the same medium, offers me distance. Time to consider. And privacy. I am not exposed and open to the scrutiny of others when I give my reaction.

I fear rejection, a “no”, or the “wrong” answer because I so often take it personally. I worry that if I make a request that is turned down, it’s because I was at fault. Be it as it may that there’s a perfectly valid reason for the other person to turn me down, I’m still at fault. And I worry that that other person will judge me negatively for making that request.

It’s crap, really.

I procrastinate over asking my husband if he can manage the kids’ bedtimes one night so I can meet some friends in the pub. Very often, I’ve had that invitation long before I work up the courage to mention it to him. Even though we’ve been married for years, and I know it’s very likely he’ll be completely fine about it, I still dread making the request.

I procrastinate over mentioning family visits. Even though my husband, though allistic, tends to like at least some prior warning of things, I leave it longer and longer and longer before telling him. It’s caused arguments in the past. He’s been embarrassed in front of friends and family because I haven’t kept him informed, and information, events and activities have been sprung on him when everyone else has known for ages.

Nowadays, I often add events, especially social activities, visits from the grandparents, kids’ birthday parties or work trips that will take me away from home, to the wall calendar in our kitchen – sometimes months before I actually speak about them. I can quite comfortably write things down well in advance.  But mentioning them verbally requires feats of bravery that take time to summon.

I’m better at asking people for stuff at work than I used to be. I’ve had years of practice, and whilst I still do procrastinate, the pressure of knowing it’s part of a job I’m paid to do does eventually kick me up the arse and make me act. But I still worry about it.

Anxiety is debilitating.

It does prevent me getting on with daily life sometimes. It prevents me having fun, God damn it, because I’m too wound up to get to the point where I can just give myself permission to get permission, to have fun.

And even when I’m happy, and life is good, I still hate asking people for stuff.


[Featured image: cartoon me. White person with mid-length brown hair clipped to one side, wearing a striped sleeveless top, fidgeting with my hands. A thought bubble reads “Please, may I…? Um…can I…? Do you mind if…? So, I’m thinking of…”.]

Fallout

I have a bruise on the ring finger of my right hand. And it’s all my fault.

Or is it?

The morning rush after a terrible night’s sleep. My daughter has a cold. She was up for much of the night coughing. And I was up with her – feeding her medicine, wiping her nose, drying her tears, cuddling her. Both of us are very, very tired.

The little boy is teething. My husband is up, but my son knows from my state of dressed-ness and ready-ness that I’ll be out of the house soon, and he wants to be with me while I’m still here. He’s screaming with the pain of his inflamed gums.

Daughter is demand avoidant because she is tired and unwell. It’s been a struggle to get her dressed for school. But we’ve succeeded.

And just as I’m about to take her to the bathroom and help her brush her teeth, I open the curtains in her room, and accidentally knock one of her Lego creations onto the floor.

And no matter what I do, I can’t put it back together exactly as it was.

And I need to get to work. My boy woke us far too early, so I might as well get out of the house, start my working day early, and come home early. But the Lego creation is broken. And my daughter needs her teeth brushed. And she’s tired. And I’m tired. And my son is crying. And my daughter is upset. And it’s all too noisy. And I can’t stop people being upset.

And I’m upset.

And something snaps.

I rush out of the room, and hit my hands repeatedly into a nearby wall. The wall is inanimate; it can’t feel pain, it won’t bleed, and it won’t fight back.

Only this time, I hit too hard.

I have a bruise on the ring finger of my right hand. It’s not huge, but it’s there. The finger is swollen. It hurts.

Logical, objective reasoning should have suggested an alternative. Some other way of getting the vestibular or proprioceptive release I was evidently seeking. I could have windmilled my arms; spun in a circle; jumped up and down on the spot. I could have flapped my hands extra vigorously.

But in that moment, my reaction was uncontrollable. Unavoidable. I succeeded in being far less self-injurious than I might once have been. But that violent release still felt necessary.

But now I’m fine.

My day is well-planned. My work schedule has a structure to it. And I’m looking forward to the things I’m going to be doing today. It should be a good day, despite how tired I feel.

Soon my daughter is fine. I brush her teeth. My husband gives Calpol to our son. I give them all enormous hugs and kisses before I leave the house. They hug and kiss me back. But my finger still hurts.

I’m a “high functioning” autistic person. An “Aspie”.

And yet here I am, with a bruise on the ring finger of my right hand.

From hitting a wall in reaction to some broken Lego.