Sensory Sensitivities – Autistic Experiences

[Image Description: bright morning sun shining over some tram tracks that appear dark]

Sensory sensitivities are common in many autistic people. We can experience the common senses very differently to neurotypical people. Autistic people can have either hypersensitivity (where senses are over-sensitive) or hyposensitivity (where senses are under-sensitive). These differences can be present in any or all of sight, hearing, touch, taste and smell; and for the same person some senses can be oversensitive while others are under-sensitive.

Sight

Light sensitivity is the most common of the sight sensitivities. Others include a strong sense of either revulsion or appreciation for certain colours, patterns etc. It can be difficult to tell whether certain sight sensitivities are due to autism or due to other eye conditions such as short-sightedness, migraines, or Irlen’s Syndrome.

Light oversensitivity can mean the sun is always too bright, even when it’s behind a cloud, and some autistic people wear sunglasses regardless of the weather to counter this. Artificial lighting can also trigger light oversensitivity, particularly fluorescent lighting which flickers at a rate too high for most humans to notice – but some autistic people can. Flashing lights may also be a trigger, such as Christmas lights on houses during winter.

Sensory sensitivities often do not make sense to those who don’t experience them, which is a major issue in the understanding and acceptance of autistic people. Some sight sensitivities, such as being repulsed by stripy patterns, for example, seem to have no overt cause and may be dismissed as ‘silly’. However, to the individual, they can produce intense emotional reactions, or even be experienced as physical pain.

Hearing

Noise sensitivity is perhaps the most well-known of autistic sensory sensitivities. The modern image of an autistic person usually includes noise-cancelling headphones, in media that is both good representation and bad representation. Loud noises or consistent interfering noises, can cause a lot of distress for autistic people. It can become difficult to focus, and culminate in sensory overload and a meltdown or shutdown.

Some autistic people, however, seek out certain sounds that may be comforting to them. Music is naturally a common one, but the tinkling of chimes or click of buttons could also be comforting. Unfortunately, autistic people can also have a strong revulsion to some sounds, like hammering – and two autistic people may find the same sound comforting for one, and repulsive to the other, leading to conflict.

Touch

Some autistic people may hate being touched by other people, or may hate certain fabrics. Autistic people with strong touch sensitivities regarding certain fabrics may find it very difficult to buy new clothes, instead wearing the same old things over and over again until they fall apart. Other autistic people have textures they love to touch and find comforting, either to wear or just to have close by to rub when they’re feeling stressed.

Weighted blankets are popular among autistic people who crave a heavy touch, as the pressure can be enjoyable. For other autistic people, though, they may find the opposite and dislike pressure. Sensory sensitivities are an area which can vary so greatly from person to person that the only real way to accommodate most of them for an autistic person is to ask that specific individual.

Taste

Taste sensitivities can be extreme in autistic people, presenting as ‘fussy eating’ as only certain foods may be deemed acceptable. This is made worse by texture and touch also entering into it, as foods can have different textures too. An autistic person with extreme taste oversensitivity may refuse to eat anything other than a small list of foods – even if the alternative is eating nothing at all.

Other autistic people with taste under-sensitivity may crave foods with lots of flavours as they struggle to detect the taste otherwise. This means that two autistic people with opposite taste needs may never be able to share a meal. Taste-oversensitive autistic people may not be able to eat spicy food, and may find something others classify as ‘not that spicy’ actually extremely hot and painful.

These sensitivities can lead to disordered eating if they are ignored or not accommodated, leading to health impacts, so it is vitally important that they are respected.

Smell

Some autistic people can’t stand strong smells at all. Perfume and deodorants are awful and make the world painful as you can never predict where you’ll smell them. Cigarette smoke is another one that can be painful and distressing – and vaping is not much better, and can often be worse as it covers whole pavements and is inescapable. Some autistic people can’t even be in the same room as someone who has recently been smoking.

On the other hand, there are some smells that autistic people may greatly enjoy, and some autistic people who will seek out nice smells. The smell of fruit, vanilla or lavender may be very calming for one autistic person, but distressingly strong for another. Some autistic people who smoke may actually enjoy that smell, however I personally am unable to understand that at all.

My Experiences

I have light oversensitivity, I wear sunglasses unless it is night or very cloudy. I also get migraines, and don’t like bright white screens – I write these posts with a green background – or indeed staring at screens too long. I don’t want to upgrade my 1st gen Kindle as the new ones are backlit and mine isn’t. I strongly dislike Christmas, as our neighbours across the road put up flashing lights that distress me.

Noise is another one. I have noise-cancelling headphones but despite them being rather expensive they still don’t block out enough. I can’t sleep in a room with other people because their breathing disturbs me. I have a visceral hatred of construction noises due to past experiences. I can’t stand the sound of other people chewing, especially if I’m not eating myself at the same time.

Touch isn’t so bad for me, I don’t mind hugs though I prefer them if both parties are wearing long sleeves rather than skin-to-skin contact – partly because I was a germaphobe even before the pandemic. When I was younger, though, I had to put on gloves after showering because I couldn’t stand the feel of my recently-wet fingers touching my other fingers! I don’t use a weighted blanket as it doesn’t seem necessary.

I have extreme taste sensitivities and that has been really damaging in the past. If I go to events with a set menu, I usually eat nothing at all. Pot-luck dinners and other food-sharing social activities are impossible as I just can’t partake. I tried becoming vegetarian but instead of substituting things, I just stopped eating more than 3 times a week until I became sick due to malnutrition. I hate and feel awkward at food-based events and try to avoid them where possible.

Bhutan is the only country in the world where smoking is completely illegal. I know this random fact because I looked into where I could move to get away from the smell; that’s how bad my sensitivity is to it. Unfortunately, I think I would rather struggle with the language – and food! – in Bhutan. I also dislike strong perfumes and deodorants but not so viscerally, and I actually like the smell of fruit a lot.

The days I wish I wasn’t autistic

[Image Description: some small boats on a lake under a dark cloudy sky.]

I will begin by saying that, no matter if one wants a cure or not, it would be impossible to cure autism without fundamentally altering who that person is, as it would require altering how one’s brain is structured. Most autistic people do not want a cure and the Autistic community is against searching for a cure, and there are valid fears that if such research continues it would be used to promote eugenics and lead to the abortion of autistic foetuses in the same manner as Downs Syndrome today.

That said, even a member of the Autistic community who has spoken of pride in their neurology and seeks to end cure-based rhetoric, can have days when they wish they weren’t autistic. This is one of those days for me, as was yesterday. I try not to talk about this often as I fear it will be used against the autistic community, but it would be disingenuous of me to pretend it was all sunshine and rainbows, and I’ve never wished that I was neurotypical.

There are reasons I can’t go into detail about what prompted this mood, but suffice to say I had to leave something early due to my sensory issues. As a child, I had issues particularly with touch and taste, but these have become much worse as I’ve grown older. I’m still in my mid-20s and my great fear is that if they continue to become worse, the world will become so overwhelming that I’m unable to function in it at all. I may be able to exist as an autistic person in a neurotypical world today, but there are no guarantees for tomorrow.

Sometimes I feel so weak and cowardly. There are things I can’t do that most people can, and that people just simply don’t understand why I’m unable to. At times I feel ashamed of my ‘weakness’, especially when I’m unable to do things I used to be able to do. In the past year, I’ve almost certainly been regressing slightly, I need more support, I’m more anxious and I need to sleep almost half my day just to function at a below-average level. It’s somewhat soul-crushing to realise you’re unable to do the things you want.

Then there’s my lack of employment. I really don’t want to go into this in detail because it’s an extremely touchy topic and when people bring it up, it immediately sets me on edge. This in itself is a problem because ‘what do you do’ is a common small-talk question and it means every new person I meet immediately sees the worst of me. Between that and feeling inadequate and embarrassed at the fact that I’m not earning any money, this is an issue. I know my autism makes it harder for me to find or cope with work.

I’m a big fan of fiction, and I want excitement in my life like the characters in the books I read or the shows I watch. But I am no longer able to cope with the level of excitement I seek. It’s left me in a no-win scenario where I’m either overwhelmed and in pain from pushing myself too hard, or I’m sitting in my bed watching other people live their lives and feeling horribly jealous and upset that I’m not there. So on days like this, yeah, if someone offered me a cure I might take it.

Thoughts on coronavirus lockdown

TW: covid-19, suicidal ideation, violence, alcohol abuse

This is my worst nightmare. I find everything both sides of the lockdown debate say infuriating. I can’t oppose it, and I can’t support it. I’m stuck in some kind of angry limbo in which all I can do is try and pretend reality doesn’t exist and deny my own emotions or they’ll overwhelm me. This doesn’t feel quite real, but more like the middle of an apocalypse movie where all one has to do is wait for the heroes to come along and magically save the day.

Around ten years ago, I remember comparing possible crises and rating them on a scale of whether or not I’d be able to cope with them. Pandemic scored the lowest on my coping scale. I was right in my analysis of my own abilities, even as a young teenager, because this is my idea of hell. In fact, it is worse than I anticipated, because there’s a duality to my current situation that I couldn’t have predicted.

On the one hand is what I saw back then: I’m terrified of germs and getting sick. I don’t cope well with even a common cold, I can barely function, I don’t want to speak or move or eat or sleep or exist. I had a bad flu over Christmas 2019 and I was making dark half-jokes about how all I wanted for Christmas was death. Even before all this, I didn’t like people touching me and I’ve been looking for an excuse to wear a face mask since I discovered that it’s socially acceptable in some other countries.

So naturally, given this, I want it stamped out as quickly as possible. I don’t want to take any risks, and I am furious at everyone breaking lockdown – a sentiment common among the disability community online. It follows on from this that I should support a particularly strict lockdown for a particularly lengthy period of time, and oppose all efforts to lift it within the UK, and I should be thanking any deities that may exist that I am not living in the United States where there hasn’t been a proper lockdown at all in many places.

Yet there’s another side to my situation that makes this rather more complex. I do not feel entirely comfortable going into explicit detail on all of this, but there is something that is worse for me than the fear of sickness – and that is being constantly bombarded with loud, disruptive noises I cannot escape from. Probably most of my friends that I speak to regularly have heard me wish destruction on my local area.

First, my neighbours. I live in a suburb where everyone is incredibly competitive to have the newest amenities, the nicest gardens, etc. This means that they have viewed lockdown as the perfect time to bring out ALL THE POWERTOOLS. It’s near constant whenever it’s not raining heavily. Lawnmowers, electric hedge trimmers, hammering, drilling, sawing, grinding metal… it’s a cacophony of loud noises. It doesn’t help that something in my past means that construction sounds are a trigger for me.

Next door has, on several occasions, been using something so loud that I can hear it through my expensive high-quality noise-cancelling headphones. I’m having a meltdown a day, which I haven’t had since before puberty. It sometimes feels like they’re conspiring to psychologically torture me and I’ve just had to go out because otherwise I would end up hurting myself – or someone else.

Then I’m extremely sleep deprived as well because a member of my household is continually purchasing alcoholic beverages which he then consumes which cause him to make rather loud screaming noises in his sleep. So, neighbours all day, screaming all night. If lockdown lasts much longer, I will not survive it. I am hoping to move out but money could be an issue, and I’d really need to live alone because of my sensory sensitivities.

So, despite my terror of getting covid-19, I’ve still ended up going out, sometimes doing things that are technically against the rules. Protests for one thing, going indoors to a friend’s house, and I have travelled more than five miles before they stopped that. And I know I should feel guilty about this, but I would be in an even worse situation than I am mentally if I hadn’t done that.

It’s a careful balance. And what is awful and tragic is that no matter what we do, we won’t be able to save everyone. If we lift lockdown, the virus will kill people. If we keep strict lockdown, people with poor mental health will deteriorate and the suicide rate will jump up more than it likely already has. This is an awful no-win situation, and I pity everyone with the misfortune to currently be in government and needing to make these decisions.

Summer: not so friendly for me

I have been rather consistent throughout the years on stating my dislike of the summer months. This is to satisfy those who find others complaining about the heat irritating, as people moan about the cold in winter. At no point have I claimed otherwise.

Summer, for me, is the season of flying sky needles of pain (more commonly known as ‘wasps’). I have a phobia of wasps, and their presence in the summer months markedly reduces my quality of life as I can’t go outside without being terrified, and I always have this worry they will get inside too.

To top off that, there is the heat, which has been worse this year than previous ones. I don’t necessarily mind the heat when I have nothing to do, but it impairs my focus and makes it hard for me to perform some tasks such as studying or making sense when I speak aloud in my first language.

I can go on holiday to hot places because I don’t have to do anything much when I’m on holiday, but I’d still prefer to be somewhere colder. Another side effect of heat is sweat, which can be itchy and very uncomfortable sensory-wise.

Don’t be one of those people who say things like ‘you don’t have the right to complain about the heat because this is good weather and so shut up’. Different people like different things, and different countries have different climates, meaning that what is tolerable for one person can be like the fires of hell to another.

This blog post is short because of why I’m writing it: I’m too hot to focus on stuff. Summer can be fun, but for me it can get a bit too much. For those of you who enjoy this weather, have a good time while it lasts! For the others, I hope the heat breaks soon!

What Being Autistic Means For Me

This week is World Autism Awareness Week, and though I’ve been exceptionally busy organising demonstrations in support of Clara Ponsatí, working on my dissertation and just generally doing more than I can cope with, I’ve decided to write about what I want people to be aware of about my autism.

I will begin with repeating what autistic people keep saying every year – awareness is not enough to make autistic people’s lives better. We need acceptance. Acceptance of who we are, of how we are different, and of our natural behaviour. We need a shift of priorities away from trying to change our behaviour to finding ways to change society so that we are accepted. It should not be our job to act unnaturally to fit into a neurotypical world.

For me, social interaction in the way deemed appropriate by society is unnatural and difficult, but I can do it. Partly because it’s easier for me to fit in with the norms than to constantly challenge them, partly because I’ve only begun to accept myself recently, and it’s hard to break the habit. And while I can appear perfectly comfortable in many situations, this is often an act.

I am heavily involved in political activism. In the past seven days alone, I have attended the SNP National Council, where I gave a speech on supporting the UCU strikes; organised a demonstration in support of Professor Clara Ponsatí, who is facing extradition to Spain on politically motivated charges; and spoken to a number of journalists about Prof Ponsatí’s situation.

Not only that, but this was my first speech at a party council or conference and my first time taking part in actually organising a demonstration. At the start of the week, I had very bad telephone anxiety. In this week alone, I’ve been on so many calls, from journalists and for job interviews that my fear of phone calls has almost completely gone. This is a very unexpected success but imagine how terrified I was before I made the calls!

While I probably appeared perfectly comfortable in all these situations, I am now completely burnt out and exhausted. There’s still more to do; next week is expected to be just as busy, if not busier. I will probably get through it all; but the minute I get time to rest I’ll probably sleep for over 12 hours trying to get over all this stress.

The part of being autistic I still don’t like at all is the sensory processing disorder. Bright lights can be physically painful, smells like cigarette smoke feel like they are burning my lungs, and I hear all the sounds. I mean all the sounds. I can’t sleep when in a room with anyone else because their breathing is too loud. Thankfully, I have little interest in relationships.

In terms of light, I don’t particularly like sunny days. I am a fan of light cloud cover. The sun can be so incredibly bright, and with all the cars and metal objects in our world, the sunlight is reflected from every which way. In an ideal world, I would wear sunglasses all the time – but I do not have enough self-confidence to do so. Fluorescent lights are also absolutely awful. I wish they would be banned. They give me migraines where my vision goes blurry, which in turn causes a panic attack to go with the meltdown caused by the sensory overload – a double whammy which I cannot control at all. I’ve ended up screaming in public as an adult over this.

Smells can be bad too, particularly cigarette smoke. I hold my breath when passing smokers on the street, and I refuse to host guests at my house that smoke as I can still smell it on them. I was in Dundee a few weeks ago for an event, and when walking to a pub after, one of the people I was with started smoking and I almost ran away. Please, please don’t smoke around me, especially without warning!

The worst sense for me is hearing. I can hear everything. I am wearing noise cancelling headphones as I write. I am in the university library, and I can still hear every time someone takes a sip of water, drops a book they were trying to get from the top shelf, or types frantically on their keyboard. Construction work is the worst for me, the mere sound of a hammer can send me into a bad rage.

This is my father’s fault. He had an extension built over the summer between my first and second years of university and I still half hate him for doing it while I was home. At the moment, both my neighbours and my parents’ neighbours are building extensions and frankly I want to flee the country. I want to live somewhere with no immediate neighbours in the future to minimise the risk of this noise.

In terms of taste and touch, my taste is as sensitive as my hearing, but it is easier to avoid bad tastes than it is bad sounds. For example, I cannot eat spicy food. At all. It makes me scream and drink about four pints of milk straight from the bottle(s) to calm down my taste buds. Do not tell me to just try it. Just don’t. Ever. Touch is actually not that bad for me, although it may play into my desire to never have sex.

Since I’ve had depression, my executive function has been particularly bad. I can counter this somewhat by writing daily schedules. What I need to do changes too often to set up a repeating schedule, so I need to write the next day’s out before bed. I used to be averse to change as well, but like with the phone calls this week, overexposure has helped somewhat. I would not recommend this though, I wouldn’t have done it on purpose. It was very painful at first.

I don’t want people to read this, and be aware of how autism affects me, just to turn around and suggest techniques to ‘fix’ this. The sensory stuff cannot be fixed at my end. Avoiding triggers is the only solution that will work. This would be so much easier if people were willing to make accommodations to lessen the impact. Accept how I am and accommodate it. You cannot cure it.

In terms of social interaction, I would like to see a societal shift away from eye contact and small talk. At the moment, continuing to mask uses up less energy than constantly educating people. Once university, and all the associated stresses, is over I hope to be able to educate more and mask less as it is a better long-term solution. At the moment, that is not possible for me.

So, this is me, an autistic university student with depression, who masks because it’s less stressful than having people stare at me when I act autistic. Who hears all the little sounds people make and often wants to run away and find some silence. Who can’t eat spicy food or sit in a room with fluorescent lights for longer than fifteen minutes or walk past a smoker without wanting to vomit.

Be aware of who I am but acknowledge that is not enough. Accept me, accept other autistic people, accept all neurodivergent people. Know that being autistic will mean different things for every autistic person. Know that we will all present differently, from each other and from other points in our own lives. Don’t just campaign for autism awareness; campaign for autism acceptance too.