#AutismAcceptance/#AutismAppreciation doodles ‘n’ scribbles, no. 30: April is nearly over, and I need to take a break (for a short while, at least).

Part of a lilac-painted living room with deep purple floor and white skirting boards. Mama Pineapple, a white femme-presenting person with red hair, wearing purple socks, blue leggings and a red, floral patterned tunic top, reclines on a brown leather sofa, one hand held over her forehead partially obscuring her face in a gesture of weariness. There are patterned cushions around her. Her other hand dangles down towards a white mug full of steaming coffee on the floor just in front of the sofa.A thought bubble above her reads “THANK F**K THAT’S OVER!”.

[Trigger warning: mention of suicide, murder, child abuse, sexism, cissexism, heterosexism, racism, gaslighting, social media abuse, “cure” therapies, ABA, ableism, neglect, mental illness.]


We’ve reached the end of April. The end of Autism “Awareness” Month. The end of Autism Acceptance Month.

And it’s been a hard one. I’ve kept my interaction with social media somewhat limited, but have still managed to encounter much that has upset me.

The thing is, “awareness” doesn’t stop after April.

All year round, every single day:

  • Somebody, somewhere, is working on a “cure” for something that isn’t even a disease or a problem.
  • An autistic adult is being told that their views are not valid because they’re “not autistic enough”, or “not like my child”.
  • Elsewhere, a non-verbal autistic person’s needs and views are being ignored because those around them presume them incapable of intelligent thought.
  • An autistic child is getting the feeling that they’re “broken” and not the child their parents wanted.
  • An autistic child is receiving stressful, traumatic conversion therapy to make them “normal” and remove their autistic “symptoms”.
  • An autistic child is becoming seriously ill through being forced to drink bleach or overdose on vitamin C to purge them of “toxins”.
  • Someone is talking, in all seriousness, about “vaccine damage”, and about autism being an “adverse effect” of vaccines.
  • A parent or caregiver is contemplating murder.
  • Somebody, somewhere is telling an autistic woman that they have no business calling themselves autistic because they, and others like them, have caused the diagnosis to be “dumbed down”.
  • Female autistics, autistics of colour, and queer, trans and/or non-binary autistics are being told to “stop making it all about them” as everybody needs support.
  • Somewhere, a media outlet is mocking autistic people and enforcing dangerous stereotypes.
  • A harmful meme is being spread on social media, and autistics are being told to “lighten up” and “get over it” as it’s just a harmless joke.
  • A healthcare professional is delivering an autism diagnosis to the parents of a child, and warning them of all the things that child will never do and explaining all the ways in which they are broken.
  • An advertising campaign is doing exactly the same in a series of commercials, flyers, and posters.
  • An “autism warrior mom” is lamenting her plight and desperately wishing that her child wasn’t such a burden.
  • Another parent is battling educators, healthcare providers, insurers and local authorities to get the support their child so desperately needs, but that is so difficult to come by.
  • An autistic teenager is contemplating suicide because they can’t stand the bullying any longer.
  • An autistic adult is staring at another job application form, wondering whether to disclose or not, how they’ll manage an interview and wondering whether this time they might finally get lucky after so much rejection.
  • Another autistic adult is trying to fend off the overwhelm and overload of working in an environment that’s uncomfortable, painful and overly-demanding of their senses and cognitive function.
  • Yet another is wondering how on Earth they’re going to get the financial support they need to enable them to live.
  • An ill-advised person in a position of power and influence is bemoaning the “autism epidemic” and wondering how on Earth it can be stopped; how autism can be put to an end.

And so much more. All over the world. Every day.

The scourge of “Awareness” never stops.

And so the work to promote Autism Acceptance must never stop. There is so much work to do.

Meanwhile, autistic people are living, loving, laughing, thinking, creating, caring, acting, performing, helping, supporting, advising, campaigning, sharing, uplifting, amplifying, celebrating, commiserating, learning, working, teaching, making, saving, rescuing, mentoring, encouraging, inventing, designing, innovating, suffering, shouting, crying.

Speaking.

And all the other things that humans do.

We’re here. It’s time to accept us, and appreciate us as a part of the world we, and you, all live in together.

Thank fuck April’s nearly over.

But the struggle never stops.

***

As for me, I’m going to have a bit of time off. My emotions, and my hyper empathy, have been, well, hyper, this month. I’ve been up, I’ve been down. And I’m pleased I’ve managed to post an entire month’s worth of images, every day, to do my bit to promote Autism Acceptance and Appreciation. But it’s cost me, as has seeing all I’ve seen (and I haven’t seen the half of it, believe me).

So next month, I’m not going to be around much. I might post the odd thing; but I might not. I’ll see how I feel.

May will be a month of self-care. God knows I need it. And my family need me. My loving husband and my beautiful children will be my focus this coming month. Plus work, and a couple of long-overdue projects that really need my attention.

I’m going to have a rest from blogging, just for a short while.

Ta-ra for now, chums!


[Image description: Part of a lilac-painted living room with deep purple floor and white skirting boards. Mama Pineapple, a white femme-presenting person with red hair, wearing purple socks, blue leggings and a red, floral patterned tunic top, reclines on a brown leather sofa, one hand held over her forehead partially obscuring her face in a gesture of weariness. There are patterned cushions around her. Her other hand dangles down towards a white mug full of steaming coffee on the floor just in front of the sofa.A thought bubble above her reads “THANK F**K THAT’S OVER!”.

I’m very sweary, and would normally quite happily not star out the swear words, but I’m hoping doing in the featured image so might help the circulation of this a bit.]

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#AutismAcceptance/#AutismAppreciation doodles ‘n’ scribbles, no. 22: I feel too much, and I cry a lot.

Black and white digital ink drawing of Mama Pineapple, a white femme-presenting person with mid-length hair. She has her eyes shut, with tears streaming down her cheeks, and is holding her hands to her head, disrupting the fall of her hair.

Before I understood more and knew better, I didn’t see myself as autistic because I knew I felt empathy. Tonnes of it. So much so that I can barely cope with reading or watching the news. I’m particularly affected when I read about, hear about, or witness the abuse or suffering of any being who is vulnerable.

I’m finding this month difficult. I’m keeping social media, and Autism Awareness Month, at arms’ length. But the stories of disrespect, disregard, disdain, mal/mistreatment, abuse, ad nauseam, of autistic people throughout history and today still manages to permeate.

I also cry a lot. I cry at small things. I cry at big things. Uncontrollably until I’m utterly spent. It’s also my default meltdown format.

This doesn’t mean I’m depressed. My positive emotions are also bigger. I just feel too much sometimes.

A lot of the time.


[Image: Black and white digital ink drawing of Mama Pineapple, a white femme-presenting person with mid-length hair. She has her eyes shut, with tears streaming down her cheeks, and is holding her hands to her head, disrupting the fall of her hair.]

#AutismAcceptance/#AutismAppreciation Doodles ‘n’ Scribbles, no. 14: Being an Autistic Parent (PART 2)

A comic strip of three panels, laid out in portrait orientation, and drawn digitally in black and white. PANEL 1: IMAGE: Silhouette of a mother and two children (the elder one long hired wearing a floaty dress; the younger one with short hair, t-shirt and tracksuit bottoms). All are barefoot, and jumping/dancing. They are surrounded by musical notes, stars and flowers. TEXT: “But there’s so much joy we share.” PANEL 2: IMAGE: Composition of a child’s drawing featuring two people and the crudely written words “I love you”, a child’s hand holding a heart-shaped object, another child’s hand holding a flower, and an iPad screen containing various emoji and the words “My Mum is the best!” TEXT: “I know they love me, from all the little ways they show me.” PANEL 3: IMAGE: Mama Pineapple, a white female-presenting person with mid-length hair, hugging two small children, whose faces are turned away from the viewer. TEXT: “And the love I have for them is the biggest, scariest, most beautiful feeling I’ve ever had.”

A continuation of yesterday’s little comic strip. One day I might expand this into a longer piece about autistic parenting, but I don’t have the spare time or executive function to commit to producing a regular web comic at the moment…


Text description:

A comic strip of three panels, laid out in portrait orientation, and drawn digitally in black and white.

PANEL 1:
IMAGE: Silhouette of a mother and two children (the elder one long hired wearing a floaty dress; the younger one with short hair, t-shirt and tracksuit bottoms). All are barefoot, and jumping/dancing. They are surrounded by musical notes, stars and flowers.
TEXT: “But there’s so much joy we share.”

PANEL 2:
IMAGE: Composition of a child’s drawing featuring two people and the crudely written words “I love you”, a child’s hand holding a heart-shaped object, another child’s hand holding a flower, and an iPad screen containing various emoji and the words “My Mum is the best!”
TEXT: “I know they love me, from all the little ways they show me.”

PANEL 3:
IMAGE: Mama Pineapple, a white female-presenting person with mid-length hair, hugging two small children, whose faces are turned away from the viewer. Small love hearts radiate outwards from the group.
TEXT: “And the love I have for them is the biggest, scariest, most beautiful feeling I’ve ever had.

#AutismAcceptance/#AutismAppreciation Doodles ‘n’ Scribbles, no. 13: Being an Autistic Parent (PART 1)

A comic strip of four panels, laid out in portrait orientation, and drawn digitally in black and white. PANEL 1: IMAGE: A headshot of Mama Pineapple, a white female-presenting person with mid-length hair, sweating, shaking, and looking exasperated, with a tear running down her left cheek. TEXT: “Being an autistic parent can be really hard sometimes.” PANEL 2: IMAGE: Mama Pineapple with her hands over her ears, surrounded and overwhelmed by a whole range of loud noises including children’s voices, loud sudden sound effects, and the Danger Mouse TV series theme. TEXT: “The noise can be overwhelming...” PANEL 3: IMAGE: A messy floor covered in Duplo bricks, soft toys, books, drawings and half eaten biscuits. A child’s foot is just disappearing out of view to the right of the panel. A teddy bear is being flung into the scene. The bottom of a switched on TV screen is just in shot at the top right hand corner. TEXT: “...as can the visuals.” PANEL 4: IMAGE: Mama Pineapple looking unsure/worried, flicking the fingers of her right hand by the side of her face. TEXT: “Am I grown-up enough? I struggle to keep myself organised, let alone my small children.”

First attempt at a (sort of) comic. Part 2 (which takes a happier, more positive slant!) coming up tomorrow.


Text description:

A comic strip of four panels, laid out in portrait orientation, and drawn digitally in black and white.

PANEL 1:
IMAGE: A headshot of Mama Pineapple, a white female-presenting person with mid-length hair, sweating, shaking, and looking exasperated, with a tear running down her left cheek.
TEXT: “Being an autistic parent can be really hard sometimes.”

PANEL 2:
IMAGE: Mama Pineapple with her hands over her ears, surrounded and overwhelmed by a whole range of loud noises including children’s voices, loud sudden sound effects, and the Danger Mouse TV series theme.
TEXT: “The noise can be overwhelming…”

PANEL 3:
IMAGE: A messy floor covered in Duplo bricks, soft toys, books, drawings and half eaten biscuits. A child’s foot is just disappearing out of view to the right of the panel. A teddy bear is being flung into the scene. The bottom of a switched on TV screen is just in shot at the top right hand corner.
TEXT: “…as can the visuals.”

PANEL 4:
IMAGE: Mama Pineapple looking unsure/worried, flicking the fingers of her right hand by the side of her face.
TEXT: “Am I enough of a grown-up? I struggle to keep myself organised, let alone my small children.”

Give in to the stim.

I’ve had a lifelong relationship with stimming. And for so much of my life, I’ve tried to stop.

Why did I do that to myself?

I’m such a stimmy autistic. I’m more noticeably stimmy than many autistics I know – to the extent that other autistics comment on just how stimmy I am. I think now about how much I stim, and how obviously I stim, and I wonder at the fact I went undiagnosed for so long.

For quite literally as long as I can remember, I’ve used my teeth and jaws as a drum kit. At various points in my life, it would occur to me that this was something others didn’t do, and that, thus, it was not “normal”. But it was a discreet enough stim that did no harm to either myself or others, and so it continued.

As a preschooler, I had an old, ragged velvet curtain that lived on my bed, the hem of which was delicious, soothing, soft delight to rub against my upper lip.

As an older child, I enjoyed “crash-landing” at bedtime. I’d take a run-up, jump forward, and sharply twist round to land with a crash, on my back, on my bed. There was a glorious release in doing so. Rather than working me up into a frenzy, the combination of twirling, twisting vestibularity and proprioceptive sinking contact of body-with-bed seemed to relieve me, ground me and relax me, albeit only for a few minutes or so.

I’ve never truly been able to lie still in bed. I find it something close to torture to lie still. One of my favourite in-bed stims is to repeatedly flex one of my feet at the ankle, rubbing the foot against the sheet beneath me. Sometimes I have both feet going, and I concoct rhythmic combinations, one foot accompanying the other but each rubbing out its own distinct motif; at other times a simple back-and-forth motion will suffice.

My sensory sensitivity means that in moving my feet when they’re covered by bedlinen, I’m hyper-aware of sweat, snags, abrasions, contours and anomalies. They agitate and irritate and prevent me from powering down. I must always keep my toenails neatly trimmed. My feet must always be freshly washed before I slip under the covers.

Sometimes in bed, I rock or wiggle my hips, or contract and release my quadriceps, feeling my knee joints tense and relax as I do so. But mostly it’s the feet.

For so many years I thought something was wrong with me. I seemed unable to relax in bed without moving my feet. From so many sleep-overs, residential school trips, Girl Guide camps, and holidays with cousins, I’d observed that most other people didn’t need constantly to move their feet as they lay in bed at night. I had a strong sense that this wasn’t “normal”.

(There was also, of course, that whole thing of everyone else around me going to sleep way before I did. On some sleepovers, I literally lay awake all night. But that’s an aside.)

I tried to stop, but couldn’t.

I carried on moving my feet at night all through my teens and 20s. And I kept on trying to stop. Because it wasn’t “normal”. But trying not to move my feet in bed was torture.

It wasn’t just bedtime. I needed to stim every waking minute of the day. In classrooms, I’d swing my legs under the desk. I’d compulsively tap my foot or drum my fingers while waiting for a bus. Once I’d started learning to play the trumpet, I’d emulate the fingering in mid-air, tapping the middle three fingers of my right hand against my thumb in mimic of the notes played on the real instrument, evoking the tunes I could hear in my mind.

Around the age of 10, I discovered split ends in my hair. This ushered in two decades of calloused finger tips and tension headaches as I squinted at the hair in front of me, closely inspecting the ends, and then picking, peeling and snapping, thumbnail digging into index or middle finger as I pulled the ends of my hair to shreds.

Split-end-picking was one of my distinguishing traits as a teenager. Another bit of ammunition the other kids could use to taunt me. But focusing on the ends of my hair helped block out the rest of the world.

But it didn’t feel healthy. And neither did picking at the skin on my arms and legs, or clawing at my scalp. Neither did smacking myself in the head. And yet I did all these things.

I wanted to stop doing these things. But I just couldn’t.

Why was it that I felt such a desperate need to move all the time? Why did my body cry out, scream out, for this input?

During my teens and university years, I moshed at gigs, bounced around at indie discos, and gyrated at clubs. I flailed and jerked about on stage in bands. In my mid to late 20s, I exercised to extremes; hours and hours of running, spin classes and free weights every week. At these times, my body got the feedback it needed in vast quantities, and I didn’t feel quite so twitchy as I do now, and as I did as a child. I still stimmed, or course, but with less frenzy, fever or freneticism.

But at times when I was less able to be active, and times of anxiety, anger or sadness, the really damaging stims returned. And nothing could ever soothe my body or soul to my own satisfaction.

I picked my skin. Peeled the ends of my fingernails. Pulled at split ends. Scratched at my scalp. In meetings at work, I worried about what others thought of me as I did so. But I couldn’t stop.

In all those years, I never realised there was a name for what I’d been doing.

When my mum first suggested to my husband and me that our daughter was autistic, I started to read. At that time I was seeing things from the “parent-of-autistic-child” perspective. I started to learn about the need to self-soothe. I gradually learned about fidget toys. And gradually, as I began to discover the writings and videos of autistic adults, I realised that a lot of this applied not just to my daughter, but to me. I realised what it was that I had been doing all my life.

There was a name. And these things I’d been doing all my life, that had this name, were a recognised part of a culture. A culture that I increasingly found myself gravitating towards, associating with.

For a time, pre- and post-diagnosis, I kept my stims discreet. Tangles or worry stones in my pocket. Tactile jewellery subtly fiddled with. I realised there were things I could do, things I could use, which were far less damaging than split end picking or scalp clawing.

And when I was with my children, I could move as they did. I could dance, sway, and spin. I still do.

But there were – and still are – times when this wasn’t enough. As I walked to work, I yearned to windmill my arms, skip, hop and twirl. I wished that dancing could be my default method of commute. I longed to clap my hands, and sing at the top of my lungs. But I was a grownup. A professional. What if someone saw me?

But my body needs movement, and I’m so damned tired of not giving it what it needs.

I need to stim as much as I need to breathe.

It’s part of my neuroqueering to stim more obviously these days. I do make dance-like movements with my arms when I walk sometimes. I do sing, and whistle, and clap. I do clamber onto walls, balancing for a time before leaping off. I reserve most of these activities for quieter, less busy spaces – attracting attention to oneself is risky. But I’ll still let my hands be a little freer with their movements, even in public.

At work, I worry less now about what others are thinking as I wiggle my fingers next to my face as an aid to the thinking process. I sway, twirl and dance by the photocopier as I wait for my documents to print. I tap my hands on my legs as I walk along. I flap them as I wait for the kettle to boil. It’s not a flap of frustration, but a relieving movement that in that moment is necessary.

Of course there are times when I tone it down. We’re not in a world where autism is that well accepted that I can freely be myself at all times. And at times, I suffer for this. Any autistic who’s in employment would do.

But outside of meetings, teaching sessions and polite conversations, I let my guard down more often than I once did. I stim more obviously these days in part because I’m now better attuned to what stims really help me. But in another part because I actually want it to be noticed. I’m still a competent, capable human being; I just happen to be one who needs to stim.

I wish stimming were more normalised. After all, everyone does it. It’s part of emotional regulation – why else does an otherwise calm person pace a hospital corridor waiting for news of a sick loved one? Why else does a student click their pen or bite their nails as they agonise over a tricky maths problem or essay question? Why else does a parent drum their fingers on the table-top as they anxiously wait on hold to have a difficult phone conversation with the headteacher?

It’s just that many of us autistics do more of it. We do it bigger. We need to because of the ways we experience our environment, and our emotions.

I wish I’d understood that when I was younger, instead of torturing myself by trying to stop.


[Featured image: ‘Wave’, by Rob Witcher. Image description: black and white photograph of a hand waving in front of a stroboscope, against a black background.]