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 All over my city, the outdated orange lamps have been replaced by new generation LED street lighting, in gleaming, glaring cold-white.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

We’re nearly at the mid-point in January 2018, and I’m only just now writing my first post of the year. I didn’t even do an end-of-year retrospective to see out 2017.

Initially, I was reluctant to do so because the final few months felt so negative. My anxiety and stress levels during Autumn and early Winter of 2017, brought on by matters entirely outside of my control that are still yet to be resolved, had put an unpleasant slant on the entire year. Besides, a lot of people I know had a rough time that year. 2017 wasn’t something I wanted to celebrate.

And then curiosity got the better of me, and I watched the video Facebook had “made” for me to summarise my year. And what did it feature? My beautiful, happy children. Plus a handful of very positive posts about things I’d done to increase autism understanding and acceptance over the course of the year. My Times Higher Education article.  Professionally, I kicked ass.  In other ways, I merely got by, but that in itself was something to celebrate.

Of course, we often self-police our own social media profiles, personae and presence, airbrushing, sugar-coating and self-censoring to project the image we want the world to see. But still, I reflected back, and realised that, on a personal level, a lot of good stuff happened to me in 2017.

I still didn’t have time to do my big retrospective, and anyway, I’m often scornful of such things. They seem so contrived, and the point at which our calendar flips over is so arbitrarily set. But one of the biggest highlights for me about last year, and something I want to truly build upon and expand in this, was connecting.

Connecting with other people like me.

I spend so much of my time trying to “spot the autistic”. And I often forget that most people I’m surrounded by are not autistic. I still often assume, because it is my reality, that everyone experiences the world the way I do. It’s only recently that I realised just how different my reality is from that of the majority, and I’m still coming to terms with this. Maybe I never will come to terms with it entirely.

I never really forget that I’m autistic – why would I want to? It’s who I am – but in those moments when I’m jolted from a reverie and suddenly remember how much of a minority we are, I feel momentarily crestfallen. How can it be that there are so few people like me? How can I have spent so much of my life alone?

Not literally alone. The “atypical” autistic socialises, networks, interacts. She has close friends and family. She has social circles. She gets things wrong a lot, intellectualises every interaction, and internally she may struggle profoundly, but still she has many connections, and many of them are meaningful.

And it isn’t that I don’t still love my non-autistic friends and family. There is more than one way to find connections with others; more than one thing I can potentially have in common with another individual or group.

There is a lot of love in my world.

But we still need to connect with people who see the world as we do. I need this, at least.

From way before my formal identification (I’m moving away from “diagnosis” as a preferred term, folks), I was connecting with other autistics online. This was valuable. Insightful. And hugely helpful.

In 2017, I began to connect physically with other autistic people.

Not all autistics like actual physical contact – I mean, in this case, touch. I’m one of those who sometimes does in some circumstances at least, but I’m selective, and also responsive. With autists far more than the rest of the population, I can usually gauge pretty quickly whether a hug is going to work or not. Sometimes, the urge to hug is instantaneous, generous, and entirely mutual. And this is a wonderful thing. That deep pressure, that warmth. It’s beautiful.

But it isn’t necessary for meaningful connection.

The best thing about physically being around other autistics, is feeling able to be myself. Feeling able to be…autistic.

Imagine a world in which you are almost never allowed to sit, stand or move in a way that is natural to you. A world in which you are forever monitoring, checking, analysing and editing your behaviour in real-time. Forever conscious that the way you naturally want to behave – need to behave – in order to feel comfortable and well in your own mind and body, may not be acceptable to others, and thus may need modifying.

And this is all on top of potential difficulties with the processing of verbal and non-verbal language, and the need to cope with potential environmental distractions, information overload, or sensory overwhelm. It’s exhausting. This is the world of the “mildly” autistic.

When I’m with other autistic people, it isn’t like that. We understand each other, we accept each other, and we accommodate each other. I revel in being able to move, speak, and emote like an autistic person, and in seeing others do likewise, unchecked.

In the past year, I’ve met autistic people. In “real life”. I’ve met up with individuals. I went to a local PARC event in November 2017. And with another late-diagnosed female Aspie colleague, I’m in the process of setting up an informal peer support group for autistic staff at work – we’re currently a very small, select group and have met just once so far, but in time I hope this will grow.

In the meantime, the two of us who are organising the group also meet separately. We have coffee, or lunch, and we talk as friends.

It isn’t just autistic people, of course. There are other people with whom I can be myself, and these are predominantly other disabled people, and other people whose brains are wired somewhat differently from the default. My network of disabled and neurodivergent friends is growing, and whilst our challenges may vary, there is a mutual appreciation of the difficulties we each face, and recognition of each other’s intrinsic worth as people.

Somebody I know who is bipolar, and with whom I delivered a well-received conference workshop on neurodiversity back in September 2017, is one of very few people I’m comfortable having lengthy telephone conversations with.  We’re very different in the way we each see the world, but he accepts my weirdnesses, and I accept his. We celebrate these things. We check in with each other and support each other.

Alongside that gorgeous, proprioceptive loveliness, firm physical hugs release oxytocin. The “love hormone”. The deep pressure of physical contact, and this surge of love, is what made me love carrying my babies in slings, and makes me dread the time when my younger child is too big to sleep cuddled up on my chest.

But the surge of love and emotional well-being can come from many forms of connection.

Here’s to much more of it in 2018.


[Featured image: two people hugging, with one person facing towards the viewer. This person is light skinned with red hair and a purple top – their arms are around the shoulders of the person turned away from view, who is blonde haired, wearing a green top. The two people are surrounded by rainbow colours, radiating outwards.]