Dear Doctor, Dentist, Hairdresser, Kindly Neighbour reaching out to touch me during conversation…
I may like you, I may not. It doesn’t matter. This is MY body. I do not have to give you access to it.
Please do not presume you can touch me – whatever your motives or profession.
I may ask you to touch me, I may ask you stop. Please respond with respect.
If I react by pulling away, asking you to stop, or acting in any way distressed then stop immediately.
Do NOT ask if I’m OK. I’m clearly not and it is not for me to justify why, it is my choice. Instead consider what you can do to make this easier for me.
Ask me if you can touch me or tell me what you are going to do.
Give me time to process that and wait for me to agree before touching me.
Do not tell me you will be quick; it will soon be over; or it doesn’t hurt. Do not keep going when I say stop. These actions are disrespectful at best and abusive at worst.
Maybe I don’t like being touched by other people because of how my sensory processing system works – many autistic people don’t. Maybe it’s because it triggers memories stored deep inside my body – of abuse, pain and trauma. Maybe I just don’t like it. Maybe one day it is OK and one day it isn’t. That is none of your business. I don’t need to “get over it” so that you can touch me. I don’t have to dissociate so that you can touch me. I don’t have to put up with it so you can touch me. You just need to take my lead because it is my body.
If you are reaching out physically to connect with me emotionally and I don’t reciprocate, then thank you for wanting to connect with me. Please don’t take the reaction of my body pulling away as rejection. Please find a different way of connecting with me that works for us both.
I do not need to give a reason for not wanting to be touched – however, please consider that every person you meet has an inner life that you may know little about. Autism, sensory processing disorder, PTSD, trauma, abuse. Or perhaps they just don’t want to be touched – that’s fine too.
Make no assumptions about how I wish to be touched. There is no hierarchy of body parts that you can have freer access to than others. It is all me and it is all my body. You don’t know how I process the sensation, and you don’t know how I perceive your touch. If I feel violated, frightened or under threat, your motives are irrelevant – telling me you won’t hurt me is irrelevant. Showing me you won’t hurt me by stopping IS relevant.
My attempt at upgrading my mobile phone online failed…yet again.
There was nothing left but to mentally and physically prepare myself and head off to town. Shops are a sensory nightmare for me. The lights, the rows of stuff that flash by at eye level like a strobe light as I walk down the aisles. The noise and smell and the echoey acoustics. Everything about large stores is distressing and overwhelms me, so I avoid them or go in with a small list and a pair of noise cancelling headphones.
A difference this time was the need for face coverings. I am tactile defensive. Light touch feels excruciatingly uncomfortable. The area around our mouths is particularly sensitive and I’m well aware of what I need to do to be able to wear a mask or face covering:
A smell that is familiar and calming
Nothing touching my lips if possible
Relax and breathe through my nose and remember to keep nose breathing rather than panting with anxiety – the hot breath sensation feels suffocating
In fact a tight snood type face covering feels better than the light touch of a mask
I’ve got used to how people look wearing masks now but still find it disturbing at times. So, I prepared myself for the experience and in I went and headed for the mobile phone department. I knew what I wanted and just needed to get things sorted out and leave. My husband, in the meantime would grab the groceries.
I was regulated as I entered the store and things were ok. I began my conversation with the staff member but found I had no idea if and when he was talking to me. I was avoiding eye contact and my usual ploy of looking at a person’s mouth was ineffective as it was covered up. As a child, doctors thought I had a hearing impairment and assumed I lip read. I suppose I do to an extent but not because I can’t hear – I hear too much so can’t work out what I should be focusing on. Seeing a person’s mouth move indicates to me where the noise is coming from.
I apologised and asked the man to repeat himself yet again – and then explained that I was having difficulty understanding him. He was great and said he’d take his mask off. I went to take mine off too but he sharply told me not to! At this point I realised I was becoming overwhelmed. I start misunderstanding simple things when I feel overloaded and can appear “not with it” to anyone observing me. The man began talking louder and slower and I thanked him for taking his mask off and explained that I wasn’t deaf, just struggling to understand.
So there I was, attempting a simple task that I had rehearsed in my head from start to finish. Yet I was beginning to panic. My breath felt hot and I wanted to pull my mask away from my mouth. The lights felt brighter and the man’s voice had got louder and slower and I needed to retune my ear to understand his sudden change of tone and volume. Give me a monotone voice any day! Excitable people whose pitch goes up and down and who wave their hands about enthusiastically are so difficult to understand – it’s like they keep swapping languages mid conversation!
We got to the end of the transaction and I set off to find my husband.
Now, I know my husband well. He has fortunately kept the same look for most of the 27 years I’ve been with him. But could I find him today? No! I couldn’t remember what he was wearing and everybody had a mask on. He looked totally different. Not, “oh there he is, my familiar husband – but wearing a mask” – but like he had completely and utterly shape shifted into an unfamiliar person. So I sent him a text. I was still functioning enough to be able to think of what to do. But I was getting hotter. My body takes a while to process temperature changes. It is another reason why I dislike shopping. I can go in and out of shops in regular time, but my brain processes the temperature fluctuation between indoors and outdoors slightly slower than regular time. I have this horrible, uncomfortable time lag with the temperature change catching up with me yet not matching what my eyes and brain are telling me is going on in my surroundings.
Not only was my face feeling horrible. My breath was hot and irritating me and of course I was panicking and breathing harder which made it even worse. My whole body started feeling uncomfortable and I had to fight the urge to rip my mask off and then rip off all of my clothes and scratch myself until I could erase the dreadful sensation off of my skin.
Relief. I found my husband. I was probably a bit jittery and edgy and I asked him what was on the list and could I go and get it. This is our usual ploy on the rare occasions we go shopping together. Give me something specific to do. But one item at a time; while he does the bulk of the shopping.
It nearly worked. My husband asked me to choose something for pudding and pointed me in the direction of the chilled cabinet. The reason it nearly worked is… whilst he gave me a specific task…he also gave my overloaded brain a choice. I needed to choose a pudding from a cabinet full of puddings.
“What shall I choose?” I asked him
“You know what we all like” he said
(and in my head I thought about how I had just asked him a proper question and he had not answered it. Why oh why couldn’t he be like me and take things literally and answer my question so I knew what to do. If I ask any more I will look like I am hassling him – I’m an intelligent woman, surely I can decide on what we have for dessert)
So I stood and looked…
And I felt the tears welling up because all I could see in front of me were coloured boxes that were physically moving around and not keeping still long enough for me to choose one.
And my brain was thinking “Emma, just look at you. You can’t even make a simple choice” and my breath was getting hotter; my clothes were feeling itchier; the noise was echoing and swirling around my head. I screwed up my eyes to reduce the glare and I opted for something I could rely on…
I engaged my good, solid, logical side.
Let’s think about puddings. If I can think of one then maybe I can imagine it in my head, like a picture. And if I have a picture in my head then I can hopefully match it to one of these boxes that are dancing about, tormenting me on the shelf.
So, what pudding shall I choose?
I cannot grab at something in my imagination. I have to logically and consciously work it out; so I began my mental checklist…
Don’t just opt for what you had last time we had a pudding. (I am super proud of that one – it took me decades not to just eat the same thing every mealtime. There is a safe familiarity about knowing what you are going to eat anyway, but if I was ever put on the spot and asked to choose something to eat, opting for the thing I ate last was a quick way of responding. And unless the person had been there at that mealtime, I could get away with it and appear decisive and confident!)
What do we all like?
Not chocolate…one of us can’t eat it
Not rice pudding…the texture – eugh!
Nothing with gelatine … we are all veggie
“This is a customer service announcement…”
At that point I physically jumped. I could see my husband approaching but the noise of the announcement sent my heart thumping and my ears ringing and I completely lost my train of thought. And my hot breath and the sensation of the mask intensified. I wanted to rip off everything that was touching my skin…and then rip my skin off too!
But I know that supermarkets are difficult for me. I could feel the usual sensory overload increasing and I knew the inevitable consequence of trying to battle through this, would be to completely overwhelm myself to the point that I either shutdown completely in order to protect myself from further overwhelm – or become so overwhelmed I was unable to control my responses.
So I said to my husband that I needed to go outside and could he finish without me. I then looked straight ahead and plotted my route out of the store. I had a kind of tunnel vision going on and I fixed my gaze on a distant point and like a guided missile I aimed for it. Had I been able to physically see the people I undoubtedly brushed past quite rudely on my way out, I would have apologised. But in that moment, I knew I had to get out and regulate myself. I had enough processing power to plot a route and follow it – but none left for adapting to anything that got in my way once I had executed my escape plan!
As I stepped outside I ripped off my mask and walked away from the store. The experience was nothing new. It is my normal. It is intense, painful and distressing. But expected. I was proud that I had recognised it and not battled on – you cannot win a sensory war by willpower. I also knew how to regulate myself.
I found myself an upright post to lean against and press with my whole body. I noticed where my body touched the post and where my feet touched the ground and I pressed and pressed and tensed all my muscles and then relaxed them until I was confident that I was in my body again.
I looked up at the sky and relaxed until a seagull flew into view and I let myself notice it and watch it, enjoying the unpredictability and respite from having to control something.
I breathed the cool air through my nose and noticed how it felt and I breathed in and out slowly.
I got my phone out and played on an app that I find soothing and I spoke to myself in my mind with gentleness. Not berating myself for not coping. Nor did I let myself focus on any negative thoughts about the store, or the staff and customers.
Actually, I had coped well. These things happen. I needed to enter the store and I had planned it in advance. I got myself out before I was overwhelmed and I regulated myself. I had not needed to wear a face covering for such a length of time before and I shan’t do it again. I’ll avoid shopping or take breaks.
I carried on with my day. I also recognised the vulnerability to further overload that happens when I have to endure sensory pain. I took things easy and didn’t put myself in situations that had the potential for further sensory overwhelm.
Over the next few days I reset myself by allowing my body, brain and senses to seek out and repeat the sensations that would soothe me.
But my fragility has lasted. I had to endure further stresses. Not noise and lights this time but emotional. Again, I planned my response. I followed my plan. I used self-care strategies proactively and treated myself with compassion.
This time my already fragile body responded by feeling severe pain in my ears – most of my senses are now functioning at a ‘normal for me’ level, but not my auditory processing. My hearing is so sensitive everything hurts. It is a week since the experience in the store and I am functioning well enough, to everyone looking in at me. I am fairly happy. I have coped with my ups and downs just as well as anyone would. I am productive and focused, and I haven’t treated myself or anyone else with anything less than respect and dignity.
But the physical pain is almost unbearable. I have cried a few times in desperation as I cannot escape it. Most of my senses are fairly well regulated but my sense of hearing will not settle. Every noise pierces my ears and hurts me. The noise of cutlery on crockery is so bad I cannot eat with my family. It feels like everyone is shouting at me. The most tormenting noise comes from within me though. Despite my expensive noise cancelling headphones and almost round the clock self-care and self-regulation strategies, I cannot find peace.
I can drown the noise out with very loud, rhythmic music but I cannot escape the noise of my heart beating and my blood rushing through my body when the external noise subsides.
This internal noise has accompanied my life. It is not always there but I can find it when I want it and in fact, it gave me some comfort as a child, as well as frightening me at times. On occasions it is so loud it physically hurts. Now is one of those times.
I remember as a little girl, we sometimes needed to get the doctor out as I would sit crying and rocking and banging my head against something to make the noise and pain stop. I can remember him coming in the night to sedate me. I would gladly welcome him now!
Each noise, whether internal or external is like a sharp stab of pain in my head. I understand why as a child I would bang my head and rock. In fact, I woke this morning with a fine matt of hair on the back of my head from the rocking I often do in my sleep when I am dysregulated.
Gradually it is easing, and I remind myself that this is how my life is and always has been. I will probably always experience times like this. When I keep my senses regulated I can cope with fluctuations in sensory information much better. When I am in a state of distress, everything can become the last straw.
There hasn’t been a last straw this time. I have been able to apply the healthy strategies I have learned to keep myself functioning.
The consequences of Sensory Trauma can be catastrophic. Terms like “meltdown” have become almost common place and do not capture the pain, severity and impact of sensory overload. It is not just a short-lived reaction born of poor tolerance and low resilience. Even when a meltdown is avoided, my body pays a price. My body has been physiologically activated and is hypervigilant and on alert. Without the escape of shutdown or catharsis of meltdown I wait in a sensory nightmare, hoping it will soon stop.
Experiences of sensory overload may be misdiagnosed as psychosis, or personality disorder. Perhaps they are viewed as attention seeking or over-reactions. Understanding my sensory processing system has helped me accept my experiences and not be scared of them. However, they are real experiences and have not disappeared just because I know what they are.
The world is an overwhelming place. Even with my practiced strategies and proactive approach to managing my life, there are inevitable times where Sensory Trauma occurs for me. My experiences may sound dramatic, but they are totally normal in my experience of the world. All day everyday I need to proactively regulate myself and keep the build up of potential Sensory Trauma at bay. It takes a huge amount of energy, but thankfully less energy than spending my life in a constant state of dysregulation.
I am tired now because I am in pain. I have had needed to keep myself living slowly and calmly so I don’t flee away from the pain or absorb myself in distracting but destructive pursuits to take my mind off it. I have incorporated endless self-care into my days and hold on to the knowledge that this will pass at some point. It always does.
If you know someone who cannot articulate their sensory experiences in speech, please consider how they may be experiencing the world.
Challenging behaviour, masking, meltdowns, shutdowns – look beyond the behaviour and stereotypes.
I’m sat at my desk at work. Outside the lorries have been reversing non-stop since 8am. Each “beep beep beep” sends an arrow of pain and shock straight into my chest whilst simultaneously burning my eyes and ears. I can hear my colleagues laughing and joking in the corridor outside, completely oblivious to my pain and to the lorries. I don’t want to go and see them because the tsunami of perfume and aftershave mixed with the sudden change in brightness when I leave my dark room for the fluorescently lit corridor will hit me so hard it will almost wind me. And their voices will get even louder, and the laughter will hurt my ears and make me jump and sound like someone chucking a bag full of spanners into a washing machine on spin cycle.
But it’s ok. I stay where I am, hyperalert and shivering at the thought of someone opening the door to my office to see me. If they do, I will need to quickly whack my mask of normality on, and pretend all is well – and nod my head and make eye contact and fight the urge to hide under my desk and sob. If I am lucky I will still be able to speak but will probably say something a bit awkward or slightly out of place as my overloaded brain tries to coordinate thoughts into spoken language.
I’ve tried to tell people how my world is. Some doctors thought I was mentally ill. Some colleagues thought I was unsociable. Teachers thought I was lazy, distracted or not trying. Some friends thought I was weird. Some partners assumed I was overreacting. I always knew I was different but couldn’t quite say why – if I wasn’t an alien; and it wasn’t pathological; it couldn’t have been spiritual, then what was it?
The trouble is this is my reality every single day. All day. It is not an overreaction. It is not an exaggeration. It fluctuates so can be difficult for myself or others to anticipate.
This is how my sensory processing works. Nothing more, nothing less. Simple. My sensory processing system works differently to the majority of peoples.
Why is my sensory processing different?
Again, the answer is relatively straightforward. I am autistic. I was born with a sensory processing system that works differently to other peoples.
My earliest hospital notes refer to how I would not feed or would feed very slowly and if someone persevered with my bottle of milk, I would typically fall asleep whilst being fed.
Roll on 47 years and I am still the last to finish my meal. A few weeks ago, I was discussing this with a friend who is far more knowledgeable about sensory processing than me. We were both eating an apple and I discovered that I have a completely different awareness of sensations in my mouth than she does. I can feel food on my lips and the tip of my tongue, and then again as I swallow, but in the centre of my mouth I have almost no sensation. This means that when I eat I feel very stressed because I never know when food is going to reach the back of my mouth. I frequently gag and I am highly anxious about eating because swallowing often comes as a surprise and catches me out. My awareness of how my body feels is muted.
This is quite different to how my hearing works. My brain tends to process sounds as very loud and harsh. Some people may refer to this as hypersensitivity. Whereas my brain processes sensations in my body as quite muted. Hyposensitive interoception you might say. These terms are all well and good for clinicians who are not autistic – they tend to feel comfortable using their sensory experiences as the “norm” and measure my experiences as “too much” or “too little”. My normal is different though and always has been.
This experience with my friend and the apple helped me understand more about how my sensory system works. Interestingly I was yawning non-stop by the end of our focused fruit eating session, and I did have a lie down and sleep afterwards. This is very typical of how a human being’s nervous system works when we are in danger. Fight, flight, or freeze. My parasympathetic nervous system responded to my stress and I couldn’t help but crash out for an hour or two. Just like I did as that tiny baby who felt distress at having something in her mouth from the moment she was born.
My reactions to certain sensory information are totally proportional to what my brain is processing. It is logical to run away from danger, or fight if your life is being threatened. Completely normal to freeze if you are terrified, or collapse and disconnect if everything is too overwhelming.
The difference between myself and someone who experiences eating an apple as mundane; or laughing colleagues as insignificant; or reversing lorries as mildly irritating at the most – is the way our sensory processing systems work. My brain processes those sounds and sensations differently to the other person I have just described. My brain gears my body up for action or inaction because it perceives a threat that the other person does not.
My reactions are normal for me. Their reactions are normal for them.
I have always been like this because I am autistic, and for me this is how my sensory processing system works. It is not a choice; it is part of my neurology. Other autistic people have their own sensory processing experiences because we are not just made up of our neurology, we have our physiology; our life histories with all their joys and traumas; our individual personalities; and our own psychologies, capabilities and characters.
Each of us perceives the world differently. To me, a vacuum cleaner may be a terrifying source of noise that looms towards me, spewing its musty, dusty smell and roaring like a belligerent dragon. To you it may be an innocuous piece of cleaning equipment whose only fault is it takes up too much room in the cupboard under the stairs! I understand perfectly well what it is for. I’m certainly not scared of it and I absolutely don’t feel any emotions towards vacuum cleaners in any form – positive or negative – they are vacuum cleaners for goodness sake!
For me, this piece of equipment causes me great distress because of the effect it has upon my senses. For you it is fine. We both see the same item, understand its intended function in the same way, but our relationship with it is very different. It causes me pain in my ears and makes my body react as if I am being attacked… It cleans your carpet.
There is no right and wrong in this situation. We perceive things differently. A bit of mutual understanding can go a long way. So can a bit of common courtesy. I wouldn’t do something that hurt you, so please don’t do something that hurts me. I cannot desensitise myself to this, its how my body works.
Of course, many of us grow up assuming our perception of the world is shared. I didn’t know that most people don’t have to have their food arranged in a certain way because vinegar or sauce touching bread would require the whole meal to be thrown away due to the unbearable texture created when bread gets damp. You may find that outrageously picky and assume I am spoilt or attention seeking. You may assume that everyone finds the smell of perfume enjoyable (they don’t!) or that everyone likes to look at spreadsheets on a computer (believe me I can’t!) or that brushing your hair is easy (some days, it really, really isn’t!).
My reactions to sensory information may well appear unusual to you. But for me they are logical and proportional.
Spending my day to day life in anticipation of what distressing sensory experiences may happen next takes a toll on my health and wellbeing. It is not healthy to spend my life in an activated state, hyperalert because I am scanning for latent danger. The ordinary activities that happen frequently throughout the day are an unavoidable potential source of trauma for me. And maybe people won’t understand when I demonstrate how distressing they are – perhaps they will think I am overreacting or have challenging behaviour. Maybe they will pathologise my reactions and mislabel them or not even believe me at all.
My experience of the world and the way I react to it has impacted on how I am perceived by others; how they have responded towards me and how that has affected our ongoing relationships. It made me more vulnerable to other types of adverse life events and left me growing up without a sense of agency. I was left invalidated and unheard.
I’m not the only one…
Autistic people have been describing their sensory differences for a long, long time. Blogs, interviews, and personal testimonies are filled with evidence of sensory differences and the effects these have on autistic people. Autism and trauma are discussed together frequently. They can manifest in similar ways and be difficult to tell apart. Being autistic increases vulnerability to trauma – of course it does! Being in a minority in a neurotypically biased world where your differences are perceived as deficits is not a good starting point for anyone.
But there is more to it than that…
The way I perceive the world through my senses is in itself traumatic. Repeatedly experiencing unavoidable pain every day that makes my body react as if it is in mortal danger is traumatic. Not being believed is traumatic. On top of all the trauma I have experienced due to the impact of my autism and the adverse life events that I have been through, I have experienced trauma since birth. Perhaps even before birth. This is sensory trauma.
Sensory Trauma has been hidden in plain sight for a long time. It is time to start some conversations about this lived experience of autistic people. It is time to be listened to. At Autism Wellbeing we have prepared a position paper about Sensory Trauma and made a short video about it.
I would like to hear other peoples experiences of sensory trauma. We are publishing our book soon and are interested in feedback on our position paper.
Our position paper has been published by ourselves at Autism Wellbeing because we want it to be read as widely as possible. It has only just been made available – please leave a review on amazon if you decide to buy it. You can purchase the position paper here: