#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.]

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.]

Are we REALLY that inflexible?

Less than a fortnight ago, I wrote about being “rigid”.

I explained about my need for schedules, plans, and organisational strategies. My need to prepare, and my alarm and anxiety in the face of uncertainty and ambiguity.

It’s there in my pre-assessment mapping to the DSM-V guidelines, under my response to Criterion B2, exemplified by:

“Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal/non-verbal behavious (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns[…])”

But as always, things are never that simple.

I mean, yes, of course, I need to organise and structure my life in the face of chaos.

Yes, of course, I struggle with change.

Yes, of course, I find “decision fatigue” harder to deal with than your average neurotypical person, because I am overwhelmed when faced with choice.

But the fact is, by the time I come to make decisions of a personal nature, I’ve already had to make thousands and thousands of micro-decisions simply to negotiate life in a non-autistic world.

By the time I come to realise I’m going to have to employ a few time-management tools and get a little help with planning, prioritising, and bending my schedule to a shape that I can work with, I’m already bent out of shape myself.

I’m always bent out of shape.

This is the nature of being disabled. And it’s not my disability – my autism – that bends me out of shape. Autistic is my natural shape.

No. It’s this world that forces me to flex, bend, fold, and contort myself.

I have to flex, bend, fold, and contort my brain, my personality, my personhood, my humanity – my very being – to suit the world in which I find myself.

We talk of “reasonable adjustments” – those supports, changes and accommodations made to improve access and enable disabled people to live, study, and work in an abled environment.

And these help. They certainly do for me.

What we rarely talk about is how many adjustments disabled people have to make every single day, to make themselves acceptable to their abled family, friends, fellow students, teachers, colleagues and employers.

We’re continually making adjustments. Maybe even continuously so…

We talk of autistic people – women and girls in particular, but I think the same can be said of anyone who has an atypical autistic profile – as “social chameleons“.

I think it goes further. We’re social contortionists.

It isn’t simply that we wear a mask or assume a role. It isn’t simply that we continually swap and switch between many masks or roles.

We’re constantly bending ourselves out of our natural autistic shape. Flexing, bending, folding, contorting, and re-configuring ourselves the better to occupy a space that doesn’t accommodate our natural form.

We have to do it consciously.

And at times, it’s painful.

And by the time we’ve done all this, on top of everything else that our brains process every minute of every day, it’s no wonder we want to retreat to structure, control, routine, rigidity.

We simply haven’t any energy left to contend with any further bending of our reality.

As so often, in describing our thinking and our behaviour as “rigid”, autism is viewed through a neurotypical lens. We are compared to those around us, and found lacking.

We are not the default, and so, consideration is not given to all that we are contending with internally, simply in order to operate pseudo-successfully in the world in which we find ourselves.

I’m tired of being a contortionist.

I’m tired of being bent out of shape.

And I long for a world in which I can always feel free to assume my natural form.


[Featured image: Circus Contortionist, by ‘Kobra’. Used under Creative Commons Attribution 2.0 Generic (CC BY 2.0) licence. Image shows a person wearing black-and-white skintight clothing with their spine flexed backwards to such a degree that their head is touching their buttocks, and their hands are grasping their calves from behind.]

We need to stop apologising.

The other day, I was attending another SEED workshop.  This time, the focus was on disability and social class (we’d already delved deep into race, gender and sexuality), and I was super-keen, as always, to get into the discussion. I felt I had plenty to say on this particular subject, and plenty I hoped to learn from others as well.

Unfortunately, the projection equipment in the training room was faulty. It had been crackling horribly during the previous workshop when we were watching a video, and one of the facilitators had brought her laptop out of the room and given me headphones so I could watch it separately from the rest of the group and avoid the painful noise. But this time, despite reassurances from the managers of the venue that the fault had been fixed, the speakers were crackling violently and excrutiatingly even when there was no audio being played. I couldn’t bear it. I announced that if the noise continued, I would have to leave the workshop altogether.

The only option was to power down the whole system, play videos using the small screen and tiny speakers of the laptop, and for the facilitators to read out presentation slide content, because the slides weren’t large enough for us to see.

And what did I do?

I apologised.

We’d all been given pre-reading on the social model of disability

We’d just watched a video on the social model of disability.

I’m well-versed in the concept of the social model of disability.

And yet, my automatic response to the situation was to apologise. My hypersensitivity to noise apparently meant it was “my fault” that nobody could watch the videos, or see the slides, on the large projection screen.

Other participants responded:

“Don’t be ridiculous!”

“Of course it’s not your fault!”

“Actually, I’m glad you complained anyway, because that noise was awful.”

The remembered trauma of the pain from the noise, and my anxiety over its unpredictability, meant I was rigid, tense, and nervous for the rest of the afternoon, even long after the source of the problem had been tackled. This had been difficult, make no mistake.

And yet still I felt embarrassed.

This kind of thing has got to stop.

These days, I’m far more “autistic” than I ever was. I’m more open in my stimming. I’ve made reference to some of the traits and features of my neurodiversity in some of the classes I teach. Sometimes I use it as a self-deprecating way of bringing levity to my delivery when things are going slightly awry – students really don’t mind a bit of humanity. You can make slip-ups, even when you’re a knowledgeable specialist (it’s far better to acknowledge your slip-ups before resuming your role as the expert – this is far more authentic than pretending you’re infallible when that’s evidently not the case).

Some of my “being more autistic” is because I’m more easily overwhelmed these days because my life is busier and more cognitively demanding than it ever used to be. And it’s true; I do seem to be more sensitive to noise, bright lights, and interruptions than I was a few years back.

But perhaps it’s simply that my self-awareness and acceptance of my autism means I’m more attuned to what bothers me, and less willing to tolerate it.

And yet I still apologise.

I have spent an entire lifetime apologising. And I’ve realised that this is something that isn’t unusual for autistic people, particularly those of us who are women, and who are adult-diagnosed. We’ve spent so long thinking we’re at fault because we didn’t realise that other people had access to an instruction manual we never received.

I apologise for misunderstanding people. I apologise for being rude. I apologise if I don’t understand a joke. I apologise if the lights are too bright, or a noise is bothering me and preventing me from concentrating.  I apologise for wanting a set of instructions in writing. I apologise for wanting a bit of extra help.

And it’s ridiculous.

The fact is, it wasn’t that my autism meant we couldn’t use the projection equipment. The projection equipment was faulty, thus preventing me from engaging with the content being delivered. That wasn’t my fault.

One of the other participants told me about an occasion when she’d been invited to co-present a conference paper with a student of hers. On hearing of the conference location, the student stated that they wouldn’t be able to participate because certain features of the venue put them at risk of an epileptic seizure.

Not being able to present wasn’t this student’s fault. It wasn’t their epilepsy that meant they couldn’t present. The reason they couldn’t take part was down to the lighting, fixtures and fittings of a building that was poorly designed without adequately considering the needs of all its users.

(The very same building, incidentally, tends to give me migraines if I’m in it for too long).

Those of us who are disabled need to stop apologising for being disabled. Because when something is inaccessible to us, it’s not us who are at fault.

Being entrenched in a medical view of disability means endlessly having to evidence one’s deficits, deficiencies, difficulties, and disadvantages. It’s so often the only way we can evidence our need for support, ‘reasonable adjustments’, or even just basic understanding from those around us. But it also means we’re perceived as less. And it means we perceive ourselves as less.

And so we apologise.

But we need to stop.

At the next SEED workshop, the facilitators will bring a portable projector and speakers, and bypass the venue’s equipment altogether.

And this will make it possible for me to participate without extreme discomfort. But it’ll also mean the other participants aren’t subjected to a noise which, whilst not painful for them, is certainly a nuisance, an interruption, and not especially conducive to learning.

Nobody loses out by such an adjustment being made.

Reasonable adjustments are a tip of the iceberg. The world could be built in such a way that no-one would be systematically disadvantaged. But that’s a long way off.

But in the meantime, we need to stop apologising.


[Featured image: heavy-duty grey carpeting in front of a set of clear automatic doors. The carpet (or mat) is covered by metal grating in a ‘striped’ layout. This type of carpeting is one of the pet hates I have of so many commercial, educational, or corporate environments, and makes my eyes go ‘funny’ Every. Bloody. Time.]