Pesky senses

[image shows a background of random light trails, with a column of pink text saying ‘smell, taste, hear, see, touch, move, feel’]

Managing sensory problems in everyday life

All of us humans rely on our senses every moment of every day. Our senses protect us and enable us to move around and engage with the world. Our senses bring us great pleasure and tremendous pain.

When our sensory systems work well they make our lives so much easier and much more interesting. Our eyes adapt to varying light, bringing pleasure through art and signalling hazards on our paths. Our noses welcome pleasant scents and warn us of rancid food. Our ears bring us the joy of music and alert us to oncoming traffic. Our sense of taste makes eating a pleasure and helps us avoid poisons.

We use touch to hold, manoeuvre and feel, as well as to be held and comforted, whilst an automatic response triggers us to remove our hand from a hot iron. Our temperature and pain sensors are closely linked to touch and help keep us healthy and safe.

As well as the usual five senses there are a number of other sensory processes which help us live our lives. Perhaps the most relevant here are our vestibular and proprioceptive senses. Our vestibular sense helps us balance and move, whilst our proprioceptive sense enables our brain to know what all the parts of our bodies are doing and where they are without having to look.

Our senses rarely work in isolation. Eating often starts with visual and scent cues triggering physiological responses like mouth watering, followed by taste and smell experiences as we eat. Walking along a pavement requires us to look and listen, touch and feel, as our bodies stay upright and move in a coordinated manner. Writing at a desk in school or typing at a desk at work means we need to maintain a seating position and carry out fine and gross motor activities whilst being alert to the environment around us.

If our sensory processes are seamlessly integrated as they should be, it’s easy to not even notice them. Most people can block out the background noise of a crowd to hear their friend talking as they stand side by side. Most people can cope with varying light levels. Most people can ignore horrible smells or make themselves eat something they don’t like. Most people can coordinate their movement and avoid obstacles. Most people manage their sensory experiences without even thinking.

Lucky them.

For many autistic people, sensory problems are one of the most disabling and hard to manage aspects of autism. Hypersensitivities can make us feel under constant attack, living in a heightened state of stress, triggering our fight, flight or freeze response. Hyposensitivities can make us crave sensory input, holding back urges to move, touch and fidget, feeling lost without sensory stimulation.

When our sensory systems are poorly integrated and disregulated we can feel uncomfortable and disorientated. It is much more complex that just being hypersensitive, which is what most people think of when sensory processing problems are mentioned. The combination of hyper-sensitivities and hypo-sensitivities across the senses makes it tricky to balance our individual sensory needs.

It was only as I started to learn more about my son’s sensory difficulties that I started to apply that knowledge to me. Recognising that this is a real thing, and not just awkward fussiness, means I feel more able to speak up if I am struggling. It also gives me the confidence to use strategies to help me manage my own sensory needs.

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My sensory life

Hearing – Many autistic people are sensitive to noise. We often hear things other people can’t hear, get annoyed and irritated by sounds other people are able to ignore, and we might find it harder to filter background noise.

For his first 7 or so years my son slept with a fan running every night, both to block out and dull background noise and to soothe him. It was only when we moved to house with traffic noise that he stopped needing this. I found that my sleep improved too. The steady hum of traffic is a welcome sound for us both.

Some people wear ear defenders and noise reducing headphones to help with hypersensitive hearing. My son didn’t take to them at all, but I’ve found them useful at work when the background noise increases or if I’m feeling particularly sensitive or irritable. I do struggle with an overwhelming urge to remove them though due to touch sensitivity. This is just one example of how my sensory needs have to be balanced as managing one sense can exacerbate another.

Hearing people eat is probably my most hated noise, and I have to leave the room if someone opens a packet of crisps, bites into an apple or sucks a sweet. The noise becomes all consuming and prompts a seething rage inside me.

I can also, when engrossed in one of my hobbies or interests, completely fail to hear what’s going on around me. At that point my senses are simultaneously hyperfocused and oblivious (this dichotomy is a common theme).

Smell – I gave up smoking a couple of years ago. I have always had a good sense of smell, even as a smoker, but it is so much more sensitive now. It makes the world really quite unpleasant when you can smell what others cannot. Everything is intensified and it all feels over-powering. I often intermittently hold my breath as I walk around to avoid wafting perfume and food smells.

At home we can manage this as my son and I have similar sensory profiles. My partner seems sensorily inert compared to us two, which helps – managing three lots of sensory needs would be an even greater challenge (I am in awe of larger families who manage this). We often eat separately. I cannot be in the room when my son eats marmite rice cakes (noise and smell) and he cannot cope with most cooked food smells.

For me, smells are the hardest sensory imposition to ignore, they get inside my head and stubbornly remain, often long after the actual smell has receded.

Taste – My son is almost certainly a ‘hyper-taster’ and he can detect the faintest of tastes. In contrast, he loves the strong flavours of marmite, salt and vinegar crisps and smokey bacon. Taste is closely linked to smell and, alongside textural sensory aversions, is at the root of his very restricted eating. These days I laugh off suggestions of hiding vegetables in his food, knowing that he would spot a hidden ingredient immediately and amused at the image of trying to hide vegetables in a marmite sandwich.

All people have food likes and dislikes. I suspect that most people can tolerate a disliked food for the sake of manners or kindness. For someone with a significant sensory aversion this can be impossible. If we overcome our initial refusal, and eat something we don’t like, we will probably retch and we might vomit. It isn’t being fussy, being asked to eat food we don’t like is on the same scale as being asked to eat a big fat juicy live slug.

My view is that as long as taste sensitivity doesn’t result in a harmful diet, it is not a big deal. Many people have dietary restrictions and special requirements and it usually isn’t too hard to be accommodated or, as a last resort, to take our own food.

Vision – Bright light is my nemesis. In fact, most light is problematic and causes me pain and stress. I know my visual perception is squiffy because other people cope fine. I mostly manage by squinting a lot, which is less than ideal.

At work I’ve recently moved from a large multi-aspect office to a small office where I can close the blinds. The difference is remarkable, resulting in no eye strain and no headaches, even after sometimes close to 10 hours in front of a screen.

Sunglasses, wide-brimmed hats and long fringes can help shade and filter, but they all exacerbate my tactile defensiveness so for now I will carry on squinting and avoiding. Light is easier to avoid than smells, sounds and tastes because I can close my eyes.

Touch – urgh! – Touch is essentially two senses as we both touch things and are touched by things. Like all sensory input, touch can have a big effect on mood. Stroking and manipulating items of different shapes, materials and textures can help both relax and awake us. Stroking the cat or using a wooden hand massager tends to calm me whereas fiddling with a tangle fidget toy or playing with a paperclip or blob of Blu-tack tends to increase my ability to concentrate and focus. Some textures can create a quite visceral reaction. I cannot touch (or even look at) lenticular images whereas my son loves them.

Being touched can cause a variety of responses. Brush past me and my whole body will feel repulsed and angry, but firm hugging (when anticipated) is wonderfully soothing and grounding. All labels must be removed from clothing, and clothes with itchy seams are quickly discarded.

Touch relates to pain and temperature too. It’s not uncommon for autistic people to have unusual pain and temperature responses. My son wears the same level of clothing all year round and only notices extremes of heat and cold. Even then he might need a prompt that he’s getting hot or cold! Similarly with pain. He often only feels it if he can see it. A minuscule injury will be felt as severe pain, whilst a punch to the arm will have little effect.

My pain and temperature responses aren’t as extreme as my son’s but I have noticed that they are different to most neurotypical people I encounter. I am always at odds with colleagues on temperature in the office and am grateful for my small sub-office where I have some control.

Vestibular – This is the sense which helps us balance, remain upright and move. Of all the senses I think my vestibular sense is the least problematic. I don’t struggle with swinging or spinning or get over-dizzy. My balance is acceptable. I don’t seek movement or avoid it.

My son is a spinner, he can spin and twirl for far longer than most, smugly showing off his lack of dizzyness. Swinging on a garden swing is one of his favourite things, going ever higher and faster. For most people these activities would be stimulating and energising. For my son they have an intensely calming and relaxing effect, and we have used the swing as a before bed activity when he’s been unable to relax at the end of a day.

Activities like spinning, swinging, jumping and hanging upside down are often assumed to do the opposite of calm, but it’s worth considering what effect they really have, rather than just assuming.

Proprioception – This is perhaps the most important sense, the one that tells our brain where the parts of our body are without needing to look. My proprioception is pretty awful.

This is the sense which makes me trip over my own feet if I’m not concentrating enough on how I’m moving. This sense makes me topple if I stand still with my eyes closed as I drift into my imagination and ‘forget’ I’m standing upright. This is the sense which makes me constantly move, apply pressure to, and fiddle with, my feet, toes, hands and fingers. This sense makes me over-extend my joints, contorting and stretching and hurting, all to remind my brain where everything is.

Proprioceptive feedback makes me feel more grounded, more organised and more coherent. Without proprioceptive feedback I feel floaty, less-grounded, as if gravity isn’t working. Sitting on my legs helps, as does a heavy blanket or a cat on my lap. I try to make use of my need to fidget by knitting and crocheting, but I also use fidget ‘toys’, doodling and random objects to fulfil this need.

My son is also a fidgeter. He craves deep pressure and will throw himself against me or the sofa, he loves rolling around and being squashed. When he was younger one of his favourite things was to be wrapped in a sturdy blanket and spun around, meeting his vestibular and proprioceptive needs.

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The myriad of ways our senses interact make for a complex picture. When one sense is heightened it can cause a chain reaction, sending us into a state of high alert, ready to fight off, evade or hide from the source. Stimulating one sense may calm others, whilst calming one may irritate another. We might be driven to extremes to satisfy sensory cravings, taking risks and harming ourselves in the process.

When we are able to find our sensory equilibrium we feel safe and comfortable, more able to focus, learn, work and relax. When our sensory needs are met we find it easier to do the things we find hardest.

Look into my eyes

A brief post about eye contact

These are my son’s eyes, cut from a photo taken 5 years ago. I know from my studies into facial recognition that the chances of anyone recognising him from this picture are slim, so here he is.

Before I even knew very much about autism at all, I learned that eye contact could be difficult and uncomfortable for autistic people. I was aware that my son found it hard and we used to encourage him to at least occasionally glance at people he was talking to, just to check they were listening (or still awake!).

While he was in the assessment process there was an incident at school and I was called in after school to speak to the deputy headteacher. I was perhaps at my most vulnerable at the time, parenting a child presenting with significant support needs, feeling pretty confident that he was autistic, but still facing mostly unsaid, though sometimes blatant, criticism of my parenting and ill-informed assumptions about the source of his behaviours.

When I was called in, the deputy head told me what had happened and then turned to my son to ask for an explanation. He looked away, probably thinking, and she grabbed and held his face to make him look at her. I froze in shock. I cannot remember what I did at the time, though it is one of those memories which brings with it a deep visceral response even now, 8 years later.

I made a complaint and she never dealt with him again. I still can’t quite believe she did it. He was probably 5 years old. He was in the assessment process for autism. He wasn’t looking at her. Did it really matter? Do we hear better if we look at the source of the sound when it is right in front of us? I don’t think it mattered and I don’t think not looking means not listening.

Since then we have been lucky to have a succession of teachers who, to be fair, have quickly grasped that eye contact does not increase my son’s ability to listen or enhance his concentration. In fact, it does the opposite. He concentrates best when he looks most distracted. If he is made to look at the teacher (supply/locum teachers nearly always expect this as they don’t know him) he hears nothing. He is too busy in the conscious and, to him, unnatural act of looking at a face.

Like many of these autistic commonalities, I hadn’t even realised I had a problem with eye contact. Like many of my autistic realisations, I didn’t know I was different until I knew I was different.

Today was a bad eye contact day. I don’t know why. Sometimes it comes fairly naturally and I am completely oblivious to making eye contact. Today I was conscious of where my eyes were looking during every encounter with a human. In the office, in a meeting with my boss, in meetings with clients and in the lift with colleagues, I could not work out what to do with my eyes.

Once you’re aware that you don’t know where to look it becomes all-consuming. It is hard to concentrate on the matter at hand when you are hyperfocused on your own eye gaze.

Should I look at your eyes? Am I staring? When did I blink? Am I blinking too much? This was raised in my assessment, I blink a lot in eye contact situations. What if I look at your mouth? Then I get distracted and fascinated by your facial hair, the peculiar shapes of your wrinkles or your wonky teeth. And I realise I’ve been staring and forgotten what we were talking about. Perhaps I should glance vaguely in the direction of your eyes but focus on a spot just behind you? Hmm, now I look vacant and bored. And round and round it goes. Note taking is a useful avoidance tactic here.

My son describes experiencing physical pain when forced to maintain eye contact. I don’t find eye contact painful but I have found that some other people’s eye gaze can be quite intimidating. It can also verge on hypnotic, drawing me in and creating a strange compliance in me that isn’t usually present! A former boss had this effect and I now avoid her as I feel compelled to sustain eye contact with her and can’t disengage. If anyone can shed light on this I would love to hear your thoughts 🙂

Eye contact can be forced, it can be painful, it can be learned and it can be intermittent. Thankfully, there are plentiful other ways to demonstrate we are listening, aware of and interacting with other people. Which way our eyes are pointing has little bearing on these activities.