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 All over my city, the outdated orange lamps have been replaced by new generation LED street lighting, in gleaming, glaring cold-white.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.]

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And just like that, I’m official.

Computer monitor stand, with a selection of coiled up Tangle toys (black, silver, rainbow and multicoloured textured), a stress ball, and a pair of sunglasses. Next to the stand is a miniature glitter lava lamp, glowing green.

Earlier this week, I had a missed call on my mobile from a private number. This washed waves of anxiety over me. I’d asked my local NHS adult autism service to put me on the callback list in the event of any appointment cancellations – a year’s wait from the date of referral for assessment (the likely duration I’d been forewarned about) was a long time to contend with when I was already convinced I was autistic. What if it had been them? What if this was the only opportunity in the next 12 months I might get to come in earlier? Too late. I had no idea who it was who had called me.

Two days later, just as I was about to leave the office to go and deliver some training, I received another call from an undisclosed number. This time, I picked up.

“Hello is that Lady Ananas?”

“Yes. Hello?”

“This is X from the Adult Autism and Neurodisability Services. I understand you’re on the short-notice callback list, and we have a cancellation this afternoon? Would you be able to come in?”

…thinking…thinking…

“Er no, sorry. I’ve due to be doing a whole day’s training that I can’t get out of. Thanks, anyway. Can you still keep me on the callback list in case anything else comes up?”

“Okay, love. No problem – it’s just that cancellations don’t happen very often. But if you can’t make it, not to worry.”

“Okay, thanks very much. Bye.”

“Bye, love.”

Phone down.

Shit.

What. The. Fuck. Did. I. Just. Do?

Walking up the road to the training venue, I tried ringing the public number I knew I had for the service. Voicemail. Shit. Cue rambling message.

And so, for the entire morning’s training, I was fidgety, anxious; not really fully there.

Why is it that I never put myself first? I’m always so desperate not to let other people down. People know me and respect me – they could cope in this situation. I really should look after myself more. I’m so stupid. This is really important, and I’ve blown it.

My training delivery partner, who was already aware of my situation (I have a very accepting, diversity-friendly workplace), asked me what was up. I told him.

“Oh, you should have just said ‘yes’! I can cover the whole thing – we’ve worked on it together. Just give them a call again – even if they’ve already offered the appointment to someone else, at least you’ll know you did all you could.”

And so I rang back. The appointment was still unfilled. I said “Yes”. And in that moment I went from still-low-down-on-the-waiting-list to autism-assessment-in-T-minus-2 hours. Yikes! Not ideal preparation time, but hey.

In the taxi to the assessment venue, I felt sick. Deeply sick. What if I lost the plot? Forgot to tell the psychologist all those necessary things that had been whirring round in my head, and populating this blog, these past few months?

Caaaaalm. Breeeaaathe. Fidget with Tangle.

The service is based in a green, leafy part of town, with wide, clean streets and large buildings. The sun was shining. All outside was calm, as I was fizzing and churning inside. I buzzed in, went through the large glass doors, and signed in.

Inoffensive décor. Nothing too jarring on the senses, apart from one flickering light near the reception desk, which I could look away from quite easily.  A very welcome cup of tea available for the princely sum of 50p. A box of sensory items in the waiting area, plus an enormous beanbag, which I opted for instead of the horrid, low-seated, upright, square chairs that I can never, ever get my body comfortable on. My Tangle was still preferable to the other fidgety items on offer.

And ten minutes later, I was in the appointment.

Another oversized beanbag was made available. I sank into it and let it cocoon me. The light in the room remained off throughout. I decided that it was okay to make minimal eye contact with Dr S, while I fidgeted, fidgeted, fidgeted with the Tangle, and talked. Dr S was supportive, kind, encouraging; sensitively and gently steering me in another direction if I talked too long on a point for which he already had sufficient evidence (brevity is not a strength of mine).

And, after two and a half hours of answering questions, and a provision of my life history (in addition to the eight-page document I’d offered up to support my referral request), it was all done. I was utterly exhausted.

And I had gone from self-diagnosed to fully-fledged, bona fide autistic. Just like that. Written report to be typed up and posted to me, of course. But the diagnosis was clear. Autistic spectrum disorder (with caveats that my autism is of a very ‘atypical’ nature), with probably ADHD and dyspraxia. Explanations for a lifetime of struggles, but also validation of my many strengths. And the prospect that I will be seen again, and can start to work through how I might work, and be supported, to be a happy, autistic me.

And with that, a weight was lifted. A key aspect of who I am was finally confirmed to me. And whilst I cried and cried, I was happy.

That was yesterday. Less than 24 hours ago. And however I’ll be feeling as the days and weeks go by, right now, I couldn’t be happier.