The below piece was written some time ago to be part of my book about disabilities, I’m currently editing that book and reassembling it, and this piece didn’t quite fit in, but I still like it.
This is important, if you consider this when supporting people you will have success, as much as any cultural needs, learning ability and even the all-important communication, our sensory needs define us, make us all truly unique. Many times throughout my career I’ve been trying to figure out what is causing a person distress, or why they refuse to go into a particular place, or use a bus and many times it’s been about their senses, usually followed with a lack of ability to communicate what they are experiencing. I have found that when looking at sensory needs, it’s often something reserved for highly trained clinicians to manage, but it’s something that any support worker should and can help people with, and any person should consider in our general interactions with others.
Have you ever been walking down the road and suddenly an ambulance flies past, sirens screaming, you’ll likely put a finger in your ear, or turn your head to avoid the intensity of it.
The pitch and volume of the siren is designed to be heard by anyone nearby so the ambulance can get to the emergency it needs, or to get the urgent case to hospital.
Have you ever walked outside and your eyes have automatically closed to a squint as the fresh light of day is so glaringly bright it nearly hurts.
Have you ever been sitting in a meeting and need to go to the toilet, as you become more aware of the need to go it becomes more intense and you can no longer concentrate on what’s being said?
These are all sensory experiences, natural and unnatural internal and external, things we all experience at one time or another, things we mostly take for granted, or at least accept as normal things we need to tolerate.
Anyone who has suffered from migraines or had intense dental pain, or broken a limb will understand how our bodies can send signals to our brain and this pain can stop us from functioning normally.
In recent years the sensory needs of people with Autism has become more widely recognised as one of the most fundamental aspects of the condition. The sensory processing differences of people with Autism makes for a considerable effect in the way they perceive the world, and therefore cope with life. In supporting individuals with Autism, we must always consider their sensory needs and how this impacts on them.
To be able to process sensory information is an important part of our daily function. Our understanding of life as humans is rooted in our sensory experiences. How we experience life and how we interpret our world could conceivably vary depending on our individual and unique way of processing of sensory information.
It’s important to appreciate that we all have a very unique sensory experience of the world, with or without disabilities. Each day in my office which has temperature controlled air conditioning to ensure that the room stays at a moderate warmth for optimal comfort, there is always a debate, one person says it is too cold another too warm and another just right.
The same debate is had daily around the world in such offices, also around the volume of the TV, or the spiciness of a curry.
I have always enjoyed strong flavoured foods, when I cook a curry I like to make it quite hot. A friend of mine who tended to eat very bland food with no salt or pepper and often no sauce at all. One day she asked that I make a curry that was very mild so she could have some, I said that’s fine and obliged by cooking what was a very bland, verging on tasteless curry. She still found it to be searing hot and couldn’t eat it.
This was before I worked with disabled people, so I wasn’t aware of how complex a person’s sensory experience of the world could be yet, but I was aware of the differences in taste and also in sound.
I am someone who enjoys dissonant, often atonal often discordant music. I can find pleasure in noise. Most people would find the music I like to be virtually unlistenable, whereas play me some Celine Dion and I have to leave the room, it actually makes me feel ill, the same effect of me playing Borbetomagus to someone.
I accepted at a young age that I had odd taste in music, the kind of sounds that only a few thousand people around the world like, and generally what the rest of the population enjoy I find absolutely horrible.
Another sound that irritates me greatly is the sound of people chewing; at times I can ignore it, or block it out. But once I become aware of the sound I find it very hard to not hear it. The worst is a person chewing gum with their mouth open.
chihck, chihsk, shhciks
I can’t hear anything else.
In my first role as a support worker in the respite house for children with disabilities we struggled frequently around controlling the environment and sensory experience of the children.
Food was always the most contentious part; we would cook hundreds and hundreds of chicken nuggets, crunchy on the outside, soft in the middle with absolutely no flavour at all. At times I would attempt to introduce new flavours, make a nice pasta sauce with “hidden” vegetables, tiny amounts of garlic, the staff team loved it, but the children summarily dismissed it.
I was picky about certain things as a child, but my food dislikes were fundamentally to do with texture rather than flavour. Mushrooms were always tricky; even now they have to be cooked just right. At KFC in New Zealand they sold little cheesecakes in pots, I hated them and didn’t realise why until an adult (I adore cheesecake, my favourite dessert) It was the texture of the fruit jelly on top, I never liked jelly or jam. I also never liked cream very much, particularly whipped and I was put off eating butter for life when in my pre-school we were churning our own butter in jars and one child opened theirs causing a huge glob of half-churned cream to splatter onto the floor, making me regurgitate instantly.
Textures affect me in other ways too, I never liked finger painting, I never liked playing with slimy things, worms, snails… To this day I still find slugs to be totally grotesque.
My first career was as a baker/chef, short lived though it was it was a significant time. I overcame some of my food dislikes, found a taste for avocados and mushrooms. I was able to immerse my hands in butter cake and pastry mixes without issue. My sensory sensitivities had developed, changed.
Through being a professional baker I had a sensory diet that gave me the opportunity to desensitise myself against certain things. Would I have immersed my hands in butter and cream by choice?
But it was work, and in certain situations I was able to accept that I had to do things that weren’t my preference, needed to get paid.
Context is important, and most of us put up with negative stimulus at certain times because we feel we have no choice, or it’s a means to an end.
How could you not like whipped cream? I’ve been asked many times, and my answer is usually, I just don’t.
It offends my senses.
People can understand it in the context of my butter churning story, but I genuinely don’t enjoy the taste.
Possibly even more innocuous is parsnips, to me they taste bitter; acrid… to others they taste sweet and delicious. I adore olives, blue cheese and other strong flavours, I can understand why some people don’t, maybe because I have some sensitivity, but I am willing to try just about anything.
Some people have such severe Hyper-sensitivity to flavour that they fear trying new things.
But children being fussy about food is just children being fussy, their taste hasn’t developed yet? Nothing new. Our tastes develop throughout our lives, we like music we hated as children, I found jazz to be tedious as a child, but now I love it. The same with films, literature and food. Sometimes it’s an intellectual development, as you understand more you can engage in more complex things.
But many people’s senses don’t develop as you would expect.
Thinking about a young man Kerry I supported, he was very sensitive to sound, and he would constantly start screaming at an incredible volume and pitch, it was after several months I was informed the sound of dishes clattering together upset him significantly. From then on I was very quiet when doing dishes, something that stuck with me ever since and made me realise that those innocuous everyday things can have a significant impact on some people. He was someone who couldn’t yet explain to us what upset him, so he resorted to screaming or often physical aggression, I was bitten, kicked and head butted by him over such things, I learned from these experiences and each time I tried to figure out what it was that triggered his response each time. Over time as I learned I was able to reduce the behaviours and make him and myself much happier.
Another young man I supported would smell his way around a room, his vision and hearing was fine, but his sense of smell was much more prominent for him. Whether he smelt for an aroma he liked and was trying to find it, or checking for a bad smell I still don’t know, he was a very ritualistic person, and he only did this in new environments so I assume it was to help him decide if it was ok.
I was once conducting some interviews for new support workers, I had Robin helping me. He has Autism and is very particular about scent. He always applies deodorant and keeps clean, often it’s the other way around where people don’t realise they smell, or don’t care.
One person we were interviewing started to sweat nervously, and nervous sweat often has a very pungent smell. Robin was starting to fidget in his chair, and then asked to leave. It wasn’t till after the interview that I realised why. The smell was overpowering for me and affected my concentration; it must’ve been horrific for Robin.
I’ve lost count how many people I’ve met who do not dress appropriately for the weather, you’ll often see it in people’s guidelines and usually it’s sensory, they don’t feel heat or cold the same, an overcoat in summer or shorts in winter. Often we think it’s because they haven’t been taught the right clothes to wear, but I doubt that is the common issue. Many people also find the feeling of certain clothes painful, and only wear very few things because of this, people with Autism often talk about being able to see, smell, hear and feel the minutiae, the sound of electrical wiring in the wall, the tickle or itch of every thread of fabric.
We all have very different tolerances to pain, I have met people who self-injure frequently, and they do not appear to feel it as pain.
I have many tattoos, it hurts getting them done, but I really don’t mind. Often it’s not the pain itself that bothers me; it’s the duration of frequent pain. Just the same when being bitten and kicked and so on, I could handle it more than others, so I ended up working with people who physically challenged for that reason.
A sense of time?
We have more than five senses? We’ve mentioned taste, hearing, the others in the “big five” touch (tactile) smell and of course sight. But there’s a few more, vestibular which is our sense of balance, usually related to the inner ear, Proprioception, where our muscles and limbs are in space, spatial awareness in other words. Also as I mentioned our sense of pain, this can be affected by all the other senses but is also a unique sense in itself. Our sense of temperature, hot or cold is a unique sense too. Time, yes that’s right we do or don’t develop a sense of time, how often have you instinctively known when it’s a certain time? Or how long it’s been since an event?
Not to mention hunger and thirst, muscle tension, stretching (indeed?) itch, Magnetoception, the ability to detect magnetic fields and thus is a sense of direction. And finally chemoreception, which affects the vomiting reflex as our brain has a sense to detect toxins in our body, and drugs and thus tells our body how to respond to them.
How do they work?
There isn’t a simple answer exactly, and I’m no neuro-scientist but to put it as simply as I can. Senses are signals sent to the brain via our nerves, and our brain tells our body (or the relevant parts) how to respond i.e. You ingest a toxic fluid, your chemoreceptor’s recognise this and tell your brain, your brain responds by telling your body to regurgitate. Or on a more common place way, you hear a song you like, your ear drums get the vibration and relay that to your brain, your brain recognises the signals and makes you smile and nod your head.
This complex array of possible sensory experiences and the reactions that may go with them is difficult enough to keep in balance as it is. If you suffer from sensory processing difficulties then the world becomes a much more challenging place, your body starts to challenge you.
So it may be to use my previous example that your brain doesn’t recognise that your nerves are telling you there is a toxin in your body, so instead of your brain telling your body to vomit, it tells you to laugh. Which could be dangerous as your body needs to expel the toxins.
I’ve known a number of people with autistic spectrum conditions who will frown when they are happy and laugh when upset, you might put this down to not understanding body language or being able to use what we would consider typical body language, but more than likely this is a person whose never put any thought into body language and it’s the signals from their brain responding to stimulus in a particular way.
When looking at all the senses we have all working together at the same time you then recognise that everything we do in life is a sensory experience, it is how we know we’re alive, it’s how we know we are doing something, eating, sleeping, feeling the breeze on our face, watching a film, thinking…
If any one of your senses is out of balance it can have an effect on your entire life. If you are hypersensitive to sound, you could walk around with noise cancelling headphones on, but then you can’t do certain jobs, can’t have conversations, can’t sleep well.
Many people probably think of sensory impairment as blindness or deafness, but as you can see it’s a much more diverse array of issues. If one sense is not functioning does that mean the others are enhanced? No. Well, in a way. If you rely heavily on once sense it will improve, or at least your brain will understand that you are using it more and start processing the information differently, and of course practice will improve ability.
When working with people with disabilities and particularly people with Autism and other similar developmental conditions we have to be very aware of all of these possibilities. What we may blame on behaviour may just in fact be a hyper or hypo sensitivity.
This means we have to consider our environments carefully, and by environment I don’t just mean the buildings we occupy, although that is very important. But it also includes what people do; does someone smell strongly of sweat? Does someone have a high pitched voice, garish coloured clothing, or is something simply different from last time… was that plant in the other corner yesterday?
Consistency is always important, people often rely on this, a stopped clock can be upsetting, an unusual smell a temperature change we can’t always make sure everything is perfect but we need to support people to deal with these problems.
Many people with autism talk about fragmented perception, having to assemble what they see and hear every time they see or hear it; even simple everyday items they may use often can still require this. People’s faces are particularly difficult, facial hair, expressions, makeup, skin tones… there’s a world of things to process before getting to your answer.
Our senses keep us safe, help us understand our own bodies, help us make choices, to learn, to relax and so much more. Sensory differences should never be underestimated; the impact on a person’s life can be immense.
You don’t need to be an expert on Sensory Processing Disorders just to have a little consideration and common sense around what people might be experiencing, use your empathy, it might not be something that bothers or affects you, but it might bother someone else.
 Popular Canadian singer
 Underground noise band from New York.