This machine needs a tune-up.

Section from Charles Babbage's Difference Engine No. 2, one of the first automatic computing engines
A section from Charles Babbage’s Difference Engine No. 2

Right now, I’m struggling to overcome autistic inertia in order to write about my struggles with autistic inertia.

It hasn’t escaped the attention of some of my readers/followers/friends that I haven’t written or drawn anything for quite a while. Two whole months in fact. It’s not that I haven’t wanted to write things; I’ve had plenty of ideas for topics I’d love to write about. I’ve even heard the words of ready-written blog posts skittering through my head.

I simply haven’t been able to get my brain into a state where I’ve felt physically able to do it.

My last blog post was at the end of The Dreaded Month of April. I needed a month off in May – partly because of overwhelm and burnout from so much Awareness; partly because the rest of my life was also pretty hectic at that time. I also got a hefty whack of bad news early in that month, and then a whole load of work-specific stress, and then we got into June, and I still wasn’t anywhere near ready to write or draw again. And then more life stuff got in the way; I wasn’t ready, and anyway, I didn’t have time.

In some ways, I don’t actually feel ready even as I write this, but I’m desperately trying to break the ‘do nothing – feel awful about it – react to feeling awful by not wanting to do anything – do nothing – feel awful…’ cycle.

Currently my life is in a state of flux. Work-wise, I’ve passed from one state of uncertainty into another. I currently have very little structure to my working day, and I’m finding it harder and harder to contend with this as each day goes by. Having limited structure and routine, and fewer impending demands, actually makes me less resilient to sudden changes or disruptions than I would be if there were more going on. They seem starker somehow than they do when my brain’s computer already has the Responding to Stuff Quickly program already loaded, because I’m having so emphatically to switch my mode of being each time something – anything – happens.

I’m therefore easily startled, horribly irritable, even more fidgety than usual, and my blood pressure’s running a little too high.

I currently have lots of time. So why can’t I get started on the things I love, and that make me feel happy and fulfilled?

I need to be wound back up. Set in motion.

This post wasn’t intended to be a brilliant piece of writing. Apologies for that. I’m merely trying to pull this somewhat cranky machine out of the mud, clean it, oil its mechanisms and somehow get it moving again.

This post is written as much for me as it is for anyone reading. I do so desperately want to be writing again.

And I will.

I just needed to start somewhere.

[PS: I did, however, write an autism-themed blog post for work last week that I was actually very pleased with. I’m sharing it here in case anyone is interested.]


[Image credit: Lars Plougmann]

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#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.]

#AutismAcceptance/#AutismAppreciation doodles ‘n’ scribbles, no. 29: My brain likes to sabotage my efforts. A lot.

Digital cartoon image. In the top right hand corner, a disembodied pink brain with a smiley face, eyes and little cartoon arms chatters away. In the bottom left hand corner, Mama Pineapple, a reddish-haired white femme-presenting person wearing a purple long-sleeved top, looks upward in despair, whilst shaking both fists. The background is grey, and the brain, and Mama P, are surrounded by lots of words and phrases denoting complete and total distraction from the task at hand (whatever that is. Probably something very important and difficult).

I love my brain for many reasons. It has brilliant ideas. It sees wonder everywhere. It’s good at learning stuff. It allows me to experience everything both in fine, nuanced detail, and on a grand, dramatic scale.

It’s also a bit of an arsehole, because it tends not to let me get on with stuff.


[Image descriptuon: Digital cartoon image. In the top right hand corner, a disembodied pink brain with a smiley face, eyes and little cartoon arms chatters away. In the bottom left hand corner, Mama Pineapple, a reddish-haired white femme-presenting person wearing a purple long-sleeved top, looks upward in despair, whilst shaking both fists. The background is grey, and the brain, and Mama P, are surrounded by lots of words and phrases denoting complete and total distraction from the task at hand (whatever that is. Probably something very important and difficult).]

#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.]

Modern lighting is rubbish.

Nothing makes me a more committed proponent of the Social Model of Disability than modern lighting.

I am far more disabled, as an autistic person, than I once was. I’m far less tolerant of sensory triggers than I once was. Noise and bright lights are the things that get me more than anything, and more than they ever used to.

And yes, some of this is down to tiredness, lack of downtime or time and space to myself, and the fact that I have a lot more going on in my life than I did in my childhood, teens and 20s. But the truth is, I’m also better able to cope with a shit-tonne more stuff these days than I was able to in my childhood, teens and 20s. I’ve learned strategies. Approaches. Methods. I exercise. I eat healthily (most of the time). I do activities that nourish and fulfil me. I share and unburden myself in a variety of ways. I manage.

And yet, here I am, far less able to deal with noise and bright lights the ever before.

It can’t just be me, can it?

And no. It isn’t.

Modern lighting is rubbish.

Social media discussions abound with autistics agreeing on how the menace of twenty-first century lighting affects their lives. Some folks no longer drive at night. Some, like me, have never driven, but find ourselves in the absurd position of having to wear sunglasses more often at night than we do in the daytime.

I’ve talked several times on this blog about my need to get out of the house for a walk – sometimes quite late at night. And there always used to be something soothing about the way older streetlamps bathed the path, the entire view in front of me, in a warm orange glow. Although I love nature, and the colour green, I use an awful lot of orange in my art. It’s a colour I’m drawn to. Perhaps it’s to do with melatonin, and needing to find ways to wind down and draw myself closer towards a place of restfulness. After all, apps abound that allow us to adjust our mobile phone screen settings to warmer, redder tones at night-time to aid sleep. Plus, everything being bathed in an orange glow means the overall contrast is reduced. The view in front of me is less jolting, stern, and abrupt.

But nowadays, my soothing night-time walks are increasingly ruined by modern lighting. All over my city, the outdated orange lamps have been replaced by new generation LED street lighting, in gleaming, glaring cold-white.

And I know. It’s more energy-efficient. The fact its beams are more “directional” means there’s less light pollution (although I’m not sure how much the local wildlife appreciates something akin to daylight beaming down on nests, burrows and other habitats). The fact it’s closer to daylight means it’s easier to catch assailants on CCTV.

But it’s ruining night-time for me. Truly and utterly. And not just night-time.

There is an ever-increasing prevalence of this particularly cold, stark white “daylight-spectrum” lighting not only along the pavements I walk, but everywhere. Car headlights. Bicycle lamps. The ceiling panels of shops, classrooms, meeting rooms and buildings where public health services are provided. Nowhere can I escape from its obnoxious, searing glare.

I recently had to cease giving blood, something I’ve always been proud and happy to do. I am truly gutted that I can no longer do so, but the truth is, the environment of my local donor centre is no longer accessible to me, since it was refurbished with bright panel lighting. After my last donation, I was in bed with a two-day migraine from the overwhelm of the situation. The centre already had televisions to keep the plasma donors entertained, and a radio blaring to mask confidential conversations. That was already a lot to cope with, on top of the mild discomfort of the donation process itself, and the unnecessary chitchat from centre staff well-meaningly aimed at calming and reassuring donors, but no good for an autistic donor like me. They installed the new lighting to allow greater visibility to the staff setting up the blood collections. Fair enough.

It just means I can’t do it any more. It sends my anxiety levels through the roof. Were I not employed full time and the parent of young children, I might have sufficient downtime to recover from the sensory demands and overwhelm of donating. But that isn’t the case.

Neurotypical friends have queried my sensitivity to LED lighting in particular. They’ve argued that – if installed properly – it shouldn’t flicker (the issue many people perceive to be my problem, here). They can’t see why it’s such a problem.

But no. Whilst flickering is a huge problem for me, for the most part because anything that moves quickly, repeats, or rapidly changes is very distracting, that’s not what I’m talking about.

Beyond the fact that modern lighting is brighter, and if it’s LED lighting I can see All The Dotty Patterns Of Every Single LED, and that if the methods of diffusion/power supply/wiring/whatever are crap or cheap (or both) then it doesn’t work properly.

Beyond the fact that the contrast between it and the surrounding darkness is so stark that it’s an additional source of overstimulation (bear in mind, here, that I’m someone who even wears sunglasses on overcast days to avoid having to scrunch my eyes up whenever I’m outdoors). Beyond the fact that the latest car headlights dazzle and dizzy me to such a degree that I’m perpetually at risk of a migraine.

The biggest problem I have with lighting that mimics daylight is that I can’t ever get away from the intricacy and complexity of my visual environment. I can’t switch my brain off, and I can’t switch off the stuff it notices all the time. And with modern lighting, All The Bloody Details are even more blindingly, bastardly illuminated than they ever were before.

As I have described on so many occasions, my brain notices way more of what I see than the brain of an average neurotypical person. And this is why, despite needing glasses or contact lenses to correct my shortsightedness and astigmatism, it feels like seeing in ultra-HD all the time.

Noticing all the details that others don’t see can be super-cool – joyous, joyful, life-affirming – when I’m happy, healthy, alert, well-rested, and not in anyway stressed. It can be a lot of fun. But when I’m not feeling great, I’d like to switch it all off, or at least adjust my mental screen resolution down a few notches.

I never get the chance to have things nicely toned down. Sometimes, I would like the things I see to be a little more warm and fuzzy. And now even the pavements I walk at night are spiked with cold white.

I pretend I don’t care about wearing sunglasses so often. I affect the kind of nonchalance that says I’m merely (neuro)queering my own sense of identity, femininity, disability, autistic-ness; I’m camping it up and revelling in it. And it’s often true that I am doing these things. And I really do like sunglasses. I like the way they look on my face. They’re a favourite fashion accessory, whether or not they’re also a disability aid.

But there are times when I feel deeply depressed that this is increasingly my reality. That the world at large has deemed that this is the way lighting should be, and the way our environment should be illuminated, the way it needs to appear, and that I am the one that must make adjustments. I am becoming The Person Who Always Wears Sunglasses. This is a new part of my identity, and I have no choice in the matter.

I find myself more and more frustrated that everything’s so much brighter and visually busier than it used to be. I’m no different. I’m no more or less autistic than I used to be. It’s my environment that has changed.

I just want to turn it all down. And I want my old night-times back.


[Featured image description: a grainy black-and-white photograph of a street at night, with parked cars to the right of the picture on the same side of the road as the photographer. On the opposite side of the road is a brick wall, with bushes and trees growing over the top. The scene is illuminated by the white blobs of street lighting, and the headlights of an approaching car.]