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:
All humans have needs, starting with the absolute essentials we need to stay alive such as food, water and the air we breathe; along with all sorts of other needs depending on our individual personalities, physiology, social and emotional requirements.
Whereas the essentials are things all humans require, we may each need different things in order to be able to thrive and reach our potential. Do we ever reach our potential as humans? Who knows? But what I do know is that on the journey towards self-actualization we must consider our uniqueness as individuals.
And for me that includes my autism.
What makes this different for me as an autistic person?
Like many autistic people growing up, I was painfully aware that I was fundamentally different to my peers. I did my best to fit in with them in order to minimise the teasing; the exasperation I created in others; and the bullying. This involved a common strategy used by many people, including autistic people called ‘camouflaging’ or ‘masking’.
As a girl and young woman, autistic masking involved me acting in a way that meant I appeared more similar to my peers than I was – this included pretending I was interested in things that girls should be interested in like bands, boys and make-up. It involved me not asking too many questions that would expose my naivety and my particular thinking style – going along with conversations that involved euphemisms and slang in the hope that all would become apparent. It rarely did!
And hiding any mannerisms, movements or ideas that exposed my autistic differences.
Interacting like this meant I frequently missed out on getting my questions answered – or even asked, most of the time! It meant that I never quite understood how friendships and relationships truly worked, I just sort of understood what it was people did within them – and I tried to copy as best I could. I avoided many social situations because they did not appeal to me, and I was not particularly popular because I did not appeal to my peers either.
All in all, I missed out on lots of knowledge and information that my peers were able to gain through intuition and knowing how to ask the “right” questions, rather than the random, unfiltered questions that went off on a tangent like mine frequently did. My social development wasn’t behind that of my peers because I lacked capacity for understanding, it was behind because I lacked opportunities for gaining understanding. I was too busy masking.
For example, I was bright enough to know that asking my classmates what the technical difference was between the two intimate-relationship based expressions: ‘getting off with’ and ‘having it off with’ would end in them ridiculing me. So, I did not seek clarity. I tried to logically make sense of the language to find the answer out for myself, but failed. That boy stuff all seemed quite odd anyway, as did most of human behaviour, and my naivety and vulnerability exposed me to many risks and left me ill equipped to cope with relationships, and understanding and advocating my needs, rights and desires.
Another negative impact of masking my autism meant I was unable to regulate my senses. I did not recognise or appreciate the impact that noisy, brightly lit, and smelly environments had on me, so I didn’t avoid them or limit them. I forced myself to carry on whilst on the verge of total overwhelm – or I shut myself off so that I could function without feeling anything at all.
Opportunities for gaining knowledge, and for developing decent coping strategies, self-advocating and asserting myself were denied due to my survival strategy of masking my undiagnosed autism.
I’ve done OK, I’m beginning to thrive and I’m recognising my potential and the value of my uniqueness. I’ve got to this point through gaining acceptance of how I am, and by playing to my autistic strengths.
What has this journey looked like for me?
My journey is ongoing, I certainly haven’t arrived at a destination where I have found my purpose – but on the good days I am beginning to thrive instead of just about making it through yet another day of struggles. Life has become less of a struggle – but there was no “Eureka!” moment of throwing away that mask, embracing my autism and finding the world had suddenly become welcoming of my neurodivergence. The world remains biased towards people who on the whole are not like me, society still needs to change and become more inclusive. I am grateful because I have more insight and opportunities than I have ever had that I can use to make my life better.
Unmasking and being authentic
I have always wanted to be accepted for being me, I have longed for people who will appreciate my questions; my unique perspectives; and my differences. But that doesn’t mean I can act impulsively or disregard other people’s feelings – even when those feelings are very different to my own and seem illogical to me.
Humans are social animals. I find social occasions challenging due to my sensory and cognitive processing, but I recognise that I have social responsibility towards my fellow humans. Like many autistic people I am passionate about equality and fairness and I become distressed at the injustices I see in the world and continually seek ways of balancing inequality and making the world a better place.
So taking off my mask and behaving authentically autistic by stopping people mid-flow to ask for clarification; or correcting someone who has made a mistake; or publicly laying on the floor rocking and crying because the noise, lights and smell of the room have become too unbearable; or distracting everyone else by moving about; or telling someone exactly what I think of them – these are all things that are genuinely “me”. They are my default settings in some ways – but should I take that mask off and show them? Or should I keep it all in and hide how the world is making me feel, keep the mask on and let my identity and self-esteem slowly erode away?
For me, the answer is “neither”.
We are social animals; our actions usually impact upon others. Our actions create responses in others and shape their attitude towards us and how we are subsequently treated – whether this is right or wrong means nothing. There are consequences for everything we do.
There will be times that I am blunt, I will say what I think, I will correct people or stop to them mid-flow in conversation. I will need to move about in order to regulate myself. I will experience sensory overwhelm in such a way that I am debilitated by it sometimes. As I said before, these are my default settings – I did not choose to have senses that work in this unfiltered way. I do not choose to take things literally. I am driven by seeking balance and find injustice so very “wrong” I cannot turn a blind eye to it. In fact, many of these so-called aitistic deficits that I was born with, are also my autistic strengths.
Can I unmask then without experiencing negative consequences?
I believe that everyone masks some of the time. It is what makes us human – and social. No one can be unfiltered, or impulsive, all the time and function well socially.
So, I choose not to mask my autism – I own it! And that means being proactive and taking responsibility for myself as well as others. Here are some examples of ways I am authentically autistic:
If I know something is going to be difficult, I prepare. I don’t mask my autism to myself either! Going to town is tough so I plan short trips, I take headphones and my bottle of water. I keep scented nasal inhalers in my bag. I don’t keep pushing myself but take time out to regulate my senses and take stock of the situation. I am proactive so that the chance of me becoming overwhelmed is reduced.
I make arrangements prior to needing adjustments wherever possible. I let someone know that if they are holding a meeting, I will need the agenda up front. I ensure people know that I prefer a text first if they wish to speak to me on the phone. Or if someone just calls, I don’t answer but ring back later when I feel comfortable rather than answering and becoming stressed. If I am entering a conversation where I am likely to need to ask questions, I’ll ask upfront how to do this best. “I’m much better at taking things in when they are written down, do you mind if I make notes please?” or “I tend to lose track if I need clarity, is it ok to interrupt to ask questions if I need to please?”.
I am assertive. If I am asked to do something that will be difficult for me I will state my needs up front without needing to justify them endlessly, make excuses, or apologise for how I am: “Emma, would you like to come to a party on Friday?” “No thanks, I really don’t enjoy parties myself, but I hope you all have a lovely time, thanks for asking me”
If I need to regulate myself, I will politely leave and go and do whatever I need to do, rather than trying to get through the situation silently whilst hiding my needs or disrupting everyone else. I will keep things to hand that help me – I may have things to fiddle with, to stroke, to crunch on, to drink. I’ll choose the chair that suits my needs best and I’ll sit near an exit and I’ll ask if there is noise or lighting that can be adjusted if need be.
I am quite a private person, so I tend to state my needs with little explanation and add to that if necessary. I do not need to justify why I need things to be like they are. Sharing my diagnosis is occasionally helpful but frequently people don’t have a great deal of knowledge about autism and may even misunderstand it. If I am not in the mood to be their teacher, I don’t have to be! It is ok to say “I am not able to wait in this queue because of my disability, please can I go straight in?” I have frequently found that if I am assertive, people will respond more positively than if I bombard them with information about why I need something.
What really, really helps?
Like many autistic people, I have a life full of effort. Effort to fit in, or effort to hide how I really am. Effort to not offend people. Effort to understand how everything works.
Even my unmasking is full of effort. My unmasking means I own my autism and I am proud of who I am and what I have achieved. But, my autistic default settings, as I like to refer to them remain unchanged. I do not choose to be blunt in order to offend people – I am puzzled that some other people do not value honesty as much as I do. I do not ask questions to annoy people, but to understand them better. My need for peace and quiet is not done on purpose to be awkward. My logical way of thinking that is so useful in some situations may seem out of place when it comes to interpreting hidden meanings or reading between the lines – but I accept that many people prefer operating in this complicated, tricksy – dishonest I might even say – way.
I can’t really hide these fundamental facets of my personality. I don’t feel a need to apologise for them either. My autistic deficits (if you view autism in a medical way) are also my autistic strengths: my integrity, my eye for detail, my innovative ways of thinking, my passion and depth of knowledge.
All humans have strengths. All humans are imperfect. That is something that unites us – autistic or not.
So, when I do act authentically me – yet offend you, please remember this: I am probably doing my best. I am probably not being deliberately annoying or trying to point out your errors. I may have defaulted to the wrongful assumption that you see the world as I do. Please try and see the world as I do for a moment too.
I will take responsibility for myself and accept my social responsibilities. This means that I recognise that not everyone else experiences the world like I do, and my actions may be interpreted differently to how they were intended. It helps me when non-autistic people reciprocate and take my perspective and discover how I am perceiving the world. When this happens, they may realise that my lack of eye contact is about conserving my strength for concentrating on their spoken word, rather than becoming overwhelmed by the deluge of sensory information that comes from eye contact. Then it becomes less important to them as they understand that I am not being rude. Then our interaction becomes more positive.
I believe that autistic people compromise, and even deny their needs endlessly. Masking our autism means our needs don’t get heard or met. We constantly try to fit in with a world that may feel alien. My description of how my unmasking works demonstrates how important my sense of social responsibility is. Just because I don’t like hanging out with people for fun, doesn’t mean I don’t care about them. Perhaps if more people were willing to meet me halfway when it comes to communicating authentically, we would have more fun!
How do I like to be treated? Same as everyone else! With respect, equality, compassion, interest, and kindness. But I am autistic. I am disadvantaged just by existing in a neurotypically biased world. This blog isn’t about how and why I should be treated better – I’m a human being for goodness sake, I should not need to ask for human rights! Instead, I would like to invite you to consider the following analogy:
Imagine that I am not autistic (I am). Imagine that I am not British (I am). Imagine I am French…
I am still human and have the exact same human needs as every other person. I share many customs with other people – lots of similarities with fellow Europeans, noticeable differences with some parts of Asia for instance.
I look similar to lots of people – quite often my French-ness isn’t obvious until I speak. When I am chatting with other French people everything looks ‘normal’. When I am chatting to British people I can sort of fit in – English is a common language after all. When I am trying to chat to Russian people, I struggle, and I am obviously out of place. (My French-ness hasn’t suddenly ‘got worse’ or ‘more severe’ by the way!)
So, assuming I am French, and you are British, how do we communicate? We learn a bit of each other’s languages. We find out about each other’s customs so that instead of finding it weird that I kiss people on the cheek, whereas you shake hands to say hello, we understand and accept this – perhaps we even find it interesting and have a go ourselves!
We understand that we have different body language with different meanings, we accept that one of us is perhaps more reserved – or more demonstrative than the other. We take our time when having conversations to ensure we can process and translate the conversation in our heads, and we doublecheck our understanding. We certainly don’t assume I am stupid or slow just because I have to translate your words into my language to think about it, and then prepare my response back into your language too. And you don’t shout so that I understand better – no one is more able to converse in a foreign language just by slowing down their native tongue, doing some actions, and speaking louder – no matter how often it resorts this!
How do we view each other? Do you think I would be happier if I just acted more British and hid that I was French? Perhaps I could learn English off by heart and speak it fluently – but I’ll never lose my accent or stop thinking in French. It’s ok though, you won’t catch it from me! But will you keep encouraging me to try harder to be more British? Lose the accent so no one knows – it’s a bit embarrassing to have a foreign friend. Perhaps you’ll encourage me to hang out with other French people as they’ll understand me better, and I’ll be happier. Maybe we can argue about whether being French or being British is best, or how I ended up being born in France.
No…No one does any of that unless they are a total racist. So, what is so different about autism? How should we treat autistic people?
In the same ways we respectfully treat our French neighbours…
We learn each other’s languages and find out about each other’s customs. We don’t follow stereotypes about what all French people do – we recognise the diversity within each nationality. We invite each other along and don’t make a big deal out of our differences, but we make gentle accommodations like pointing out in advance things that could be tricky. We are genuinely interested in each other and we share and learn. We certainly never write a French phrase book or scientific article about what it is like being French without consulting someone who actually is French. We use bilingual signage where appropriate. We don’t blame the French person for being rubbish at English or tell them that just because they know how to order a drink or ask directions, they should be able to discuss the finer points of Shakespeare.
If I was treated as a human, a three-dimensional, complicated, complex, valid human being that is different in the same way a French person is different to a British person, my life would be much better.
“Non-vascular plants tend to be small, but some grow quite large”
That was one of the last pieces of information I remember hearing in a classroom. It also gave the kiss of death to my academic endeavours at that time.
I had wanted to study this particular ecology course for years and finally took the opportunity following redundancy to enrol on a course. It was mostly practical – hooray! It was topic based – even better! And it was my absolute favourite subject, and I already knew masses about it – I’d be surrounded by other interesting mature students and we’d spend loads of time outdoors in the field and minimal time indoors – what could possibly go wrong?
What went wrong was that my way of thinking, learning and understanding was completely incompatible with the course providers way of explaining, teaching and describing.
What would have helped me when the lecturer described non vascular plants, was an example, a diagram, a photo or something to get my head round so I understood what they meant.
What actually happened was this conversation inside my brain…
“NON-VASCULAR blah blah blah SMALL, SOME blah blah blah LARGE”
I started rooting around (pardon the pun!) in by memory bank for a seed of information (sorry!) that I could grasp hold of to help me clarify what the lecturer meant. Imagine the mental equivalent of searching in your laptop files for a folder named “non vascular plants” and the computer processor whizzing through every available file one by one to find the best match.
At that moment what I actually needed was to press pause and make the teacher stop while I searched for information. I don’t possess a speedy processor like a computer has, and that’s not how education works. You can’t put people on pause, it would disrupt them and everyone else. So I did the next best thing…
I took a deep breath, braced myself for looking stupid, and stuck my hand up. I tried to catch the teacher’s eye, but without having to make eye contact – not an easy task! Fortunately she noticed me and I asked “Can you give me an example of a non vascular plant please?”
And she said…”I’ll get on to that in a minute” and carried on describing the various attributes of non vascular plants:
They don’t have special tissues for carrying food and water (xylem and phloem)
They tend to be smaller than vascular plants
They don’t have seeds
They prefer water
So now several things were happening inside my head.
A voice from my youth was telling me “See what you’ve done? What a stupid question. Everyone else knows apart from you. You need to sit still, everyone hates the person who asks questions. Even the teacher. See, she won’t even answer you”
So I had a bit of a mental battle with that unpleasant voice, along the lines of “It’s fine to ask, you need an example so you can create a visual image in your head and get on with learning. Stop giving yourself grief. You are 46 not 6. You are not at school. You know this triggers you. Relax. You’ll do fine”
I was aware that the teacher was still talking but I was actually too engrossed in my internal battle to know what she was saying.
I was also aware of the fly buzzing (interesting) – the lights flickering (ouch!) – the pencil tapping (annoying) – the chair scraping (aaaahhh that HURTS!!!) – the breeze through the window (nice) – the bird outside (I wonder what it is and what it’s doing?) – the breathing of the woman next to me (creepy) – the minty breath of the man across from me (yuck, I hate kissing people who chew gum, it’s icky and sweet and minty cold – I hope I don’t have to kiss him – get a grip Emma, why would you have to kiss him?!) – keep your hand still Emma – DO NOT do that hand thing you do to calm yourself down – take a drink of water instead (you’ve overpoured it and it’s running down your chin stupid – don’t think about the horrible cold wetness) – the brightness of the whiteboard and the reflections on it (don’t even look!) – the people walking past (FFS don’t they know I’m trying to concentrate) – sit up straight ( that’s ‘A VERY IMPORTANT THING’ in education, the ability to sit on a chair properly) – when did I last pee? I hope I don’t need to go. Do I need to go? Goodness knows, but what if I do? (panic) – the ceiling tiles don’t match (why don’t they match?) – keep your hands out of sight Emma, for goodness sake don’t calm yourself down (they already know you are thick because you don’t know what “large” means – don’t let them see you are weird too) – the picture on the wall is crooked (why??!!!) – and the myriad of other things that were of absolutely equal importance to my brain at that moment – and always, always are.
And I was still trying to work out what was meant by “Non vascular plants tend to be small, but some are quite large”. My brain was thinking…”Small like a tennis ball? Or an ant? Or something else? Empire state building large? Or an elephant? Surely not, what else is large, I wonder what it can be large like?”
I am a visual thinker. When someone says a word, I create a picture in my head. That’s possibly why I am more comfortable in the world of science and tangible things rather than in the world of abstract ideas and fantasy. I can do abstract ideas, but I need to make them concrete somehow. That’s why I love analogies and sharing examples of how autism works in practice and what is going on undercover.
I had no picture of a non vascular plant to use as a starting point. I had nothing to measure “small” and “large” against. Further describing the attributes of a non vascular plant added additional processing demands. Learning that a thing I cannot imagine anyway, has no seeds and no xylem or phloem is asking me to take an unknown and then asking me to take stuff away from it. My brain was ready to pop.
And all this reminded me why me and education don’t work. And my self esteem plummeted.
So whilst I appreciated the teacher’s need to get on with the lecture, I was left floundering…and behind everyone else in the class. If she did go on to give an example of a non vascular plant, I missed it. My urgent attempts to block out all that unfiltered sensory information, soothe the tormented schoolchild in me who was busy reliving the trauma of her early educational experiences, and work out what a non vascular plant could actually look like, got in the way. In fact, it could well appear that I interrupt and then don’t bother to listen to the answer. In fact, I am sure I’ve heard teachers tell me exactly that!
So what could have helped?
Easy. A simple response to my request for an example: “think mosses, liverworts, low lying plants without roots and seeds, non-vascular plants tend to love water” would have been fine.
That would have given me enough to go on.
Or this could have helped if it was displayed on the Powerpoint presentation. Thinking visually doesn’t mean you need to give me a physical picture. It means you need to give me the information I need to create a picture for myself:
Or something like this may have helped me and would have been quicker to process than the above example:
Any of these three ways of giving me an example would have enabled my logical brain to work out how to define “small” and “large” and identify what was meant by non vascular plants. I would have known that the Empire State Building was a bit much because I could have applied my understanding of “oh, it’s something like a moss – of course, if it’s large it’s not likely to be tall because it is not rigid enough” etc etc
So why did I feel a bit thick?
Because everyone else “already understands” what large means in this context. So why don’t I?
I have an open mind, of universal proportions. It is unfiltered and massive and capable of zooming into the atomic level in order to understand something, and then zooming back out again and looking at it from every conceivable angle – plus a few inconceivable angles too! This is why I am renowned for “thinking outside the box”, talking utter nonsense, and coming up with some inspired ideas – and half the time I am not sure which is which. I am not constrained by convention or accepted hierarchies or preconceived ideas.
My world is not only big and unfiltered, it is fluid and shifting and changing all the time. My sensory processing works in such a way that my experiences of sensory information fluctuate. We all experience this – think how much louder a noise sounds when you are scared and alone at night. Or how everything looks brighter when you are happy. My brain needs much more, or much less sensory information to register the sensation than some people do anyway, and this is further affected by everything from my mood, to my health, to the type of environment I am in and how busy, bright, loud and smelly it is.
What I “know” about the world, does change from moment to moment because my reality is chaotic and ever shifting due to the way my sensory processing system works. I create order, predictability and systems to understand things and to anchor myself to. I learn facts off by heart. I match the unknown to the known in order to learn. It is completely feasible to me that “large” could mean elephant size or the Empire State building size.
I have no natural filters, to help me find the “correct” answer, so I use my own filters. They are called “taking things literally” and “logic”. I impose routines and structure to give me that order and predictability that is missing from my world. The more chaotic my world becomes, the more I rely on my filters.
When I don’t have enough information and apply logic or take things literally it can expose truths that others gloss over and miss – I notice things or patterns that are frequently overlooked by other people. It can also involve me appearing to misunderstand things. I may have made perfect sense of what I know – but if what I know is only part of the finer detail, and not the bigger picture, I could be completely on the wrong track.
I struggled through the rest of that day on the course, determined to prove I had what it takes… I didn’t. I had further struggles with following instructions – “go and gather some plant material” was followed by me sneakily watching what my classmates were doing and copying. I knew “plant material” didn’t mean a whole tree but WTF did it actually mean? The trouble with sneakily watching and copying, is it rarely goes undetected. In a school setting it can easily result in taunts of “look at her copying us, do you want to be our friend Emma?” followed by laughter and further mocking. Explaining my way out of that situation by telling my classmates in a completely honest and logical way “no thank you I don’t want to be your friend, I don’t even like you” does not actually result in appreciation of my honesty, or even relief that thank goodness the weird kid doesn’t want to be their friend. It further alienated me from my classmates and made teachers think I didn’t even want to try and fit in.
I got to the end of the first day of that weekend long course, ate my meal in the communal dining hall – further sensory and social nightmares – all whilst desperately trying to convince myself I could do it and I wasn’t a total failure. But I couldn’t do it. I went to bed and awoke at 2.30am and spent the next 4 hours crying and tormenting myself about how useless I felt.
I am sharing this glimpse into a few hours of my life to show how my brain processes things. The way I logically think and the way my sensory processing works. But what I really want people to realise is the impact of these things. I cannot help how I am. It is not a choice. I am not deliberately asking stupid questions, or not listening, or getting distracted.
“Trying harder” adds a further layer of pressure that alerts my senses to scan for danger and my brain to process the sensory information it is receiving in more extreme ways – everything gets even louder or even brighter – or I can no longer feel where my body is and what it is doing unless I look at it. My world becomes more chaotic and I need more structure. I lose my anchors and come adrift and I have to seek clarity and create order. I suddenly need to ask more questions, I become more literal, I need to do more of those things that that regulate me. I can risk the outcome and not do these things, or opt for self-preservation and mask these needs. The resultant masking is a temporary fix that leaves my needs unmet and chips away at my self-esteem and identity.
There is a living, breathing, beautiful human being behind every assumption we make about what autism is or isn’t. My face may lack expression, I may look bored or distracted and like nothing bothers or effects me. But look back at the sheer volume of processing that I am doing to understand a “simple” statement. Look at the additional things I am processing – all those sensory experiences that are clamouring for equal attention with each other. Reflect on how every single one of those sensory experiences has an associated thought, emotion or train of questions to additionally process. Think how complicated and painful and distracting and distressing that may feel, how hard I am trying to cope and fit in. Perhaps you know of autistic children that look like they are keeping it together at school and then come home and collapse from the sheer overwhelm? Consider just how overwhelming it actually IS for them. Feel humbled that they can take their mask off with you.
Do you know what would help in this situation when accessing education?
Autism awareness? Perhaps… A little bit maybe.
Autism training that teaches the traits of autism? Absolutely useless in this situation.
Acceptance? That would be nice – but actually you shouldn’t be accepting that a fellow human being is in this state of distress.
Kindness. Absolutely, but ONLY if you know what kindness means for me.
So what would help me most is for you to recognise that I am a fully human, three-dimensional person, with an inner life as complex as the next person’s. I am unique, I am not lesser, or somehow not taking it in, or unable to understand things. Every single human being is unique. I have explained my experience of learning and each of us will have our own unique preferences, strengths and needs. Adapt and respond to every individual. On a practical level, I need very, very simple adjustments:
An adjustment of attitude. You need to accept that my world and your world could be very different. But each are totally and utterly valid. No amount of adjustments in the form of equipment, support or special adaptations will work if your attitude towards me doesn’t adjust. It’s a reasonable expectation – and a right.
Start small. adjust the environment based on what everyone needs. Encourage people to sit where they are most comfortable. Near a window, facing a door, whatever.
We all benefit from regulating our senses. Do we need all those lights? Can we get rid of some of the background noise? Reducing the amount I have to process with some of my senses gives me a better starting point for learning. Having the option to increase sensory input can help too – let me move when I need to. So how on earth do we balance everybody’s needs if we are all different? Remember we are whole people. Maybe I don’t like noise when I am working but you do. You like lots of light and I hate artificial lights. So I wear my headphones and you sit by the window. Autistic people are frequently great practical problem solvers. We can help each other. And as a whole person, I recognise that my senses do not work in isolation. If I cannot control the noise, I can regulate my other senses, it still helps. If I am autistic and have got as far as being sat in your class, I will undoubtedly be a resilient person with extensive experience in handling adversity and distress. Ask me about me.
Please answer my questions. If someone is bold enough to ask, they clearly want to know. Do not assume that because it is not important to you, it may not be important to them. You may be enabling them to continue a train of thought that would otherwise derail.
Allow students to photograph or record lectures. That way they can replay them or feel comfortable in distracting themselves or regulating themselves when they need to, without losing track.
Recognise different learning styles. I absolutely must have information in the right order so I can build up a picture. Some students need to do things practically, others prefer listening. Recognise your own biases if you are a teacher. I stayed away from describing learning styles in depth in this blog, because it is more important to focus on each individual’s needs.
Lack of understanding does not mean lack of intelligence. Ability in one area does not mean ability across the board. Difficulties in one area do not mean difficulties across the board.
Ask people what they need. Ask in a way that is practical. If you say “what do you want?” It might sound inclusive and as if it is offering me choice, but how do I narrow down what the options are? The question is too big. Instead ask me which is preferable between option a and option b. Learn from the experts – the ones with lived experience.
It can take me time to process things. I may have a question about something you said five minutes ago or five days ago. Build in time for this and make it perfectly acceptable to ask. It does not mean I am slow or not paying attention. Remember how much extra stuff I am processing just by being in that room. If you ask me something, give me time to process it. Don’t ask me again but in a different way because you assume I haven’t understood. You will double my processing, not reduce it.
And remember that each of us has a life full of past experiences that will undoubtedly have played a part in how we feel today. Stepping into situations that highlight our struggles is a risky business. Respect that.
I haven’t been back in a classroom since. I left the course deeply disappointed. I was the child whose parents were told when they dropped 4 year old Emma off on her first day of school – already reading and writing – that she was destined for Oxbridge. It never happened. I have a photographic memory and love learning so sailed through my GCSE’s with no effort. Two attempts at A level courses and two attempts at a degree – the second attempt lasting less than an hour! None worked out for me. I found employment and worked my way into a successful professional career. I even completed a MA successfully via distance and work based learning. I am writing this blog to share some insights that may help people. I also need to process what all this means for me as I embark on my PhD research. Again by distance learning, but this time with me owning my autism and asking for support and understanding upfront. My research is about employment and neurodiversity. Unlike education, the world of work is a place I have largely thrived. But for many autistic people that is not the case. This is where I hope to use my positive experiences to change things for other people.
In the same way that we show kindness and compassion towards others, it is important that we show ourselves kindness and compassion too.
During times of stress, or when we are feeling fragile, struggling, or overwhelmed, it can be easy to give ourselves a hard time, or tell ourselves to toughen up. I often feel that society tells us time and time again to “just try harder”. And time and time again, I keep doing more of that thing that wasn’t working for me – but even more so! I don’t have enough hours in the day to fit everything in, so I stay up later. I don’t have enough energy to even take a shower, but I’ll sort out washing my son’s mountain bike. I keep going, holding on to the false belief that it will somehow make me stronger and better able to cope.
However, resilience isn’t built by doing the thing that hurts you even more so that you get used to it! All that does is teach you to put up with harmful things you should actually be avoiding.
Like many autistic people, I experience sensory information like sound and smells in a different way to many typical people. Some autistic people have difficulties processing how we feel – our sense of interoception may be muted, or alternatively, over-responsive and we can feel bodily sensations (hunger, needing the toilet etc.) and emotions in a less or more intense way than other people do.
I am an ‘under-feeler’. I often don’t know what it is I feel – I’m sure there is something going on but I can’t say what or where. On an off day, if I am lucky I have a general sense of ‘meh-ness’ or that life is ‘probably not ok’. When other sensory input is bombarding me, my interoception weakens further.
Many of my senses are affected in a slightly bizarre looking way. My visual processing can go haywire and I lose chunks of my vision because it’s too noisy. Or something very upsetting happens, and rather than feel sad, I feel seasick when I change my walking pace or direction. The issue is with my neurology, my brain is processing sensory information differently. It is not an issue with any of my sense organs.
All of us experience the world through our senses. This includes how we see, hear, smell, taste and touch the world – as well as how we know where our bodies are and how they are feeling. To function at our best, we need to be in what is sometimes referred to as the “just right state”. This means that our brains and nervous systems can receive, organise and understand sensory input and respond to it in a regulated way.
We all need different amounts of input at different times. Many autistic people need more sensory information or less sensory information than other people typically do in order to become, or stay regulated. Emotional and sensory regulation is about doing what we need to do to get the balance just right. For me, this is the fundamental principle of self-care. Unless I’m in an ok place to start with, there is no point attempting any more sophisticated self-care techniques. The fantastic thing is most of what we can do to regulate ourselves is very straightforward.
If we feel hyped-up or over-stimulated, we may need to calm ourselves. If we are feeling lethargic, flat, or floppy, we may need to do something energising. Regulating ourselves is part of our daily lives for most people and often we don’t even notice we are doing it. If I need to do something a bit nerve wracking I’ll instinctively take a deep breath first. If I need to unwind after a busy day, it feels natural to run a warm bath with some of my favourite scented bath oils. When I want a pick me up, I’ll enjoy the stimulating effect of inhaling the aroma of my mid-morning cup of coffee.
We are also quite natural at co-regulation too. This is when we help each other regulate ourselves. As parents we are often attuned to our children’s needs – I may recognise my son’s distress before he does and act in ways that helps him to regulate himself – whether that’s a hug, or a warm drink, or a wrestle.
I firmly believe that self-care is a disposition rather than a technique or approach that can be got out and used when required. It’s an attitude and a way of living. However, I haven’t always taken good care of myself. I learned the hard way and I struggled for years and used all sorts of unhelpful and harmful ways to regulate myself and cope with the inevitable stresses and strains of life.
As an autistic person I experience the sensory processing issues I described above. I also experience some of the other common experiences that autistic people have:
My world feels chaotic and confusing as my processing of it fluctuates daily; depending on the environment, my health, the weather, my mood and how much I have going on.
I seek consistency and order so that I have something solid to anchor myself to. Frequently I find the neurotypically biased world we live in doesn’t understand or offer me this stability, so I have to create my own.
I seek clarity through using logic and by taking things literally – I expect my honesty to be replicated in others – sadly that may not be the case!
My brain is always consciously working out what to do. It can be tricky to pack any more processing into it. It’s easier to rely on learned routines, set pieces, and organisation.
My body is always waiting for the next bombardment of sensory pain. If I shut it off I have to stop relating to everyone and everything. If I stay alert, I risk getting hurt.
Filters and hierarchies – what are they! I am open-minded, inquisitive and fascinated by everything – but dare not ask in case it’s the “wrong” question.
I spend a great deal of time masking. This means I have more opportunities, I’m taken more seriously, I look more normal and so get treated better. It also means I don’t get my needs met because no one knows my struggles. No one answers my questions. I make my body behave unnaturally in order to not upset people. Basically, I encourage my dysregulated state rather than using self-care. When people tell me to just be myself, I feel relieved – then realise they often mean “be yourself – but not like that!”
I get immense joy and healing through my senses and feel blessed that I experience things other people may miss.
I can focus on my interests with incredible intensity and commitment.
I see patterns, trends and details others overlook or filter out.
So long as I am allowed to experience it this way, my world is big, fascinating, ever-changing, and always full of wonder.
I frequently feel that I miss the things that many neurotypical people intuitively understand. I have always felt that way. I also feel that autistic people intuitively know what they need to do to regulate themselves, cope with the ups and downs of life and engage with the world. These things we intuitively know may not look very neurotypical. They may even be misunderstood, pitied or mocked. Perhaps they aren’t even considered self-care, simply because they don’t always look like a neurotypical person’s self-care. But my interests, and my sensory connections to myself and the wider world are my self-care. I have learned to play to my strengths. My autistic strengths.
At times of increased demand, an autistic person’s routines, structure, and self-care and regulation can include an increased need for order, timetables, questioning, and repetitive behaviours. This is not a sign of regression; not coping; or ‘becoming more autistic’. It is a similar response to everyone else’s and is driven by the autistic person intuitively understanding what will help them cope. Most people do more of whatever it is they do to cope in times of need. Whether that is writing more lists, biting their nails, hyper-focusing on a hobby, bouncing up and down, rearranging their CD collection in order – or whatever.
Fostering an attitude of kindness towards ourselves is good for our wellbeing. It can become a good habit if we practice it regularly. I had to learn how to make a habit of self-care. My default used to be self-hate. It’s not surprising when you have grown up in a world that is biased towards neurotypical people; that has increased exponentially in terms of the sensory information all around us every day; that doesn’t believe you, or thinks you are ill, disordered, broken or wrong when you try and explain how it genuinely is for you. A world that assumes you are deliberately doing what you do just to annoy everyone else. Surely an intelligent person like Emma can’t be that stupid.
But I intuitively knew I needed to self-soothe. I needed to find peace and calm. I needed to direct my intense energies somewhere. And for many years it was hit and miss. I accidentally stumbled across some good ways of achieving this and some dangerous ways.
It was not natural for me to shift towards self-care. I tried at various points in my life to follow particular methods, models and techniques. I frequently hear people say how meditation just doesn’t work for them; or yoga is a non-starter; or they don’t have time to do anything creative and wouldn’t know where to begin anyway. I’m one of those people. I am highly organised in some ways but completely unable to plan or remember to do any special self-care activities as well.
So I don’t. Well, I tell a lie, I sort of don’t!
I needed to change my attitude towards myself.
“Actually Emma, you’re alright really. Don’t take those negative thoughts so literally. Look at your achievements, you’re fab!” But I knew I wasn’t fab. If anyone is going to win a battle of thoughts and words against me, it’s me! Trying to convince myself logically that I was worthy of compassion didn’t work. I learned there was no point arguing with myself. Fortunately, compassion is not actually a feeling. It’s what you do and how you treat people.
But I also knew that I am a practical problem solver. I am not one who is overcome by emotions, and I have never been able to force my emotions anyway. So I stopped fighting myself. It reminded me of when I lived up this really rough track in the middle of nowhere. Friends who attacked the track in their car and tried to conquer it could end up knocking the silencer off their exhaust! I would set out at a slow speed and let the car find the path of least resistance. I’d gently hold the steering wheel but let the car find it’s own way around the potholes and over the bumps. I’d reach the top slowly and surely – and intact.
I didn’t make changing my mindset any part of my journey. Instead, I focused on making a new habit. This was the time where I had to be really organised and plan things with my self-care – it felt clunky and awkward at times. I felt painfully self-conscious and had to keep telling myself to back off when I taunted myself about trying to be compassionate towards myself. I remembered some tips from my music playing. Nigel Kennedy, the violinist says he slows a new piece of music right down so he can play it. And then he repeats it at least 40 times at slow speed. Even when he knows it off by heart and wants to speed up, he keeps creating his muscle memory through accurate repetition. Once it is firmly embedded, he can begin to increase the tempo.
Our brains are not a muscle. But they do have neuroplasticity and can create new pathways. So I practiced. I wrote a list of things to do when I felt bad. I kept it on my phone. They were simple things that would regulate my senses like doing some washing up; stretching an elastic strap; pushing against the wall; listening to music through headphones; eating some crunchy crisps or nuts. They sound ridiculously pointless. How can pushing against the wall stop me from feeling dreadful? But the key was to do them before I felt dreadful – and practice them throughout the day. They are not fixes, they are ways to feel regulated. Once I am regulated, my body slows down it’s search for hidden danger and things begin to gain their true sense of proportion again. Everything becomes more manageable.
I also practice my mindfulness techniques. I have used mindfulness for decades, I occasionally attend classes or formal sessions in order to refresh my knowledge. This isn’t essential, but works for me. Mostly I make sure I do things in a mindful way – once again, it’s a disposition rather than an activity. I may eat part of my meal mindfully – I’ll notice what the food feels like in my mouth, and how it tastes. I’ll put my knife and fork down in-between mouthfuls of food. There’s no way I could eat a whole meal in this way – just by attempting it I’d be putting myself under so much pressure, I’d ‘fail’. So I don’t set myself goals. I just check in with myself several times a day and have a mindful moment. No pressure, no goals, if it doesn’t feel right, that’s fine. Success and failure don’t form part of the experience. If I go a whole day without doing anything mindfully then so what. When I do things mindfully I have moments of peace. Moments of living outside of my busy brain. It really helps. This way of treating myself is compassionate and works well for my personality. I have a tendency to really get into the things I’m into. I’m either no good at something, or I’m an expert! I am either disinterested, or I’m its biggest fan. Self-care can be planned, it can be structured, but it can’t be forced. If it becomes an obsession, it stops being self-care.
But I like being into stuff! I quite like obsessing. I certainly love delving as deep as I can into a topic and immersing myself in new knowledge. That’s fine. I see it as one of my autistic strengths. My ability to hyper-focus in times of stress is like a laser beam of positivity piercing the fog surrounding my brain. So I do hyper-focus, but in times of known or anticipated stress like the current pandemic, I have a mantra of ‘wide not deep’ and ‘only positive’. I create myself windows of intense focusing and try not to fixate on only one topic. I have always loved nature and always will. It will always be my escape, my asylum from the urban world. I have absolutely disappeared off down some wonderful rabbit holes in times of stress. I have also focused on other topics too and I have actively distracted myself from immersing myself in struggles that will sadden me or that I cannot change. I may not have contributed to the solution but I haven’t added to the problem either. I sometimes need to be a pacifist and not join some of the wars our world is waging. I need to conserve my energy for my own battles, I need to strategise and conserve my strength for the battles I cannot avoid. I feel lucky that I have an ability to focus and enquire and explore subjects with objectivity and open-mindedness. My self-care involves using my interests as a distraction, to feel good, to achieve and to lose myself. I make sure I use that immense mental energy in a positive way.
I have written a blog about sensory joy and healing. I describe how it feels to experience intensely positive sensory experiences.
I make sure I prioritise those activities that bring my joy. For me that means walking in the woods; listening to music; having time with no noises from people; time with no questions; mindful moments where I just notice without analysing or questioning. It’s about reducing some of the cognitive and sensory demands.
I may notice myself being unkind towards myself – perhaps I’m berating myself yet again for how crap I am at life. Or perhaps I’m pushing and pushing in the hope things will go right, just because I want them to and I’m putting all this effort in. Sometimes I challenge myself, but mostly I shift my focus. I no longer need my list I practiced with. All that practicing has paid off. I am finding that mostly when things start feeling bad, or going wrong, or however I want to put it, I reach for compassion as readily as I used to reach for a personal insult towards myself. Of course I still feel bad – but I feel less bad about feeling bad. I can feel utterly fed up – but in a safer way than before. The world has not started treating me any better sadly. But I have stopped handing it so many stones to throw at me.
There are other simple techniques I use. These too were part of my practicing and now come more naturally. I read positive things people have said to me in messages. I bake a cake. I avoid interacting with people unless I am fairly certain they will not add to my stress. I do something helpful and kind towards others – it’s quite difficult to treat yourself badly when your mindset is on being kind to others. Even if I think I am the biggest loser on the planet, if I start doing something positive or helpful for other people, my self-loathing shifts.
I find positive physical things to do. Proprioceptive input is massively regulating for me. If I have that horrible sensation in my body that I can’t shift, that is crying out for pain, and that just won’t be soothed, then I mindfully and gently do something that gives me a massive hit of body awareness. Sometimes I think what I want is a hug, but I don’t always want the intensity of another person that close to me. Controlled movements are key. Pushing against the wall; deep massage with an electronic massager; my weighted blanket – all these help me to feel soothed and comforted. I can also create an awareness of my body through moving and enjoying the sensation. Whether that is repeating something that feels good, stroking something that brings me comfort, or even dancing around the kitchen disgracefully when no one is watching. I can locate myself back in this unpredictable, shape-shifting, sensory nightmare of a body again. I can begin to realise it is me and that’s ok.
Sometimes when it all gets too much I switch off to protect myself from further onslaught. It used to be hard to switch back on. I choose to stay engaged more of the time now, but that requires proactive self-care to keep myself regulated.
Here are some suggestions for how you might like to consider making self-care a way of doing things for yourself…
• If you feel yourself becoming tense, angry or stressed, take your time, back off from pushing yourself, take a few minutes to chill
• Accept that sometimes things feel tough and this is not your fault
• Use your senses to notice what you can see, feel, smell, and hear in this moment
• Do something that is fun – dance with your kids, make something, listen to music
• Regulate your senses and emotions so you are more able to cope
• Consider the language you are using towards yourself in your thoughts and words
• Treat yourself in the way you treat your most loved ones
• Make a list of helpful strategies you can go to when you notice you are being unkind to yourself
Do something kind for someone else
Find one good thing that has happened this year, this week perhaps, or even today. It you feel like it, find another, and another. Let that hyper-focusing mind seek out some positive memories and thoughts.
My son started playing an online game called Clash of Clans, about two years ago. He had his first mobile phone and he and a few mates downloaded it.
We had a good talk about online safety and set about learning how to “chat” with other players. In fact I googled a list of text speak and abbreviations so we could decipher all the BRBR’s, CoC’s, and TIA’s.
But the chatting bit wasn’t for us and he convinced me to download the game too and join his clan. I thought it was a good idea so I could a) keep an eye on his safety and b) ‘get down with the kids’ – LOL – and find out what the attraction was with gaming.
Then there was c). Unintentionally I found I quite enjoyed playing, and it provided lots of opportunities for mother and teenage son chats about life, the universe and everything.
The game involves starting from scratch with a base that you can gradually build up with troops of different types, and defenses and resources. You take part in battles and as you win more loot and gain more experience you can upgrade your base and all its various archers, giants, wizards and dragons. You win more money and increase your magical abilities. You can spend your resources however you wish and shape your base accordingly.
And being a game, once you have accumulated enough experience and resources, you can level up. And with that comes tougher opponents to battle and higher stakes.
It’s very much like life. My son mocks the players he refers to as “rushed”. The ones who use real life money to upgrade their weapons while they are still novices and learning their battle skills. They are easy opponents to beat. Their bases look flashy with all the newest kit, yet weak and simple to penetrate and win an easy victory.
It’s a strategy game too – just like life. You can run at your enemy willy nilly, throwing your best bombs and shooting your best arrows and sometimes you’ll taste victory. Or you can plan and strategise and choose your battles and sneak in and win that way – or do all that right and step on a hidden bomb and lose!
There are no sure fire ways to win every battle. Preparation is important, but no amount of preplanning and picking your best troops will predict your next battle. My son and I often discuss strategy and technique, and the various analogies our game playing has with life. As a respected level 3 Master who reached those impressive heights with no cheat codes or spending of actual cash, I am worth listening to!
As an autistic person I frequently like to do things in the same way each time. It provides me with much needed predictability in this chaotic world I find myself in. It means I am wonderfully reliable, solid and consistent. It also means I can be metaphorically shooting my level one arrows when I’m fighting level six battles.
I still have my favourite old attacks and defenses now I’ve leveled up, but I have to ensure I adapt them to a more sophisticated opponent. If I keep on using my winning strategies from my early playing days now I’m in the Master league, I’ll look amateurish and rarely come out on top.
But I like my winning strategies from my early days. Life was simpler and enemies easier to predict. I want to keep using those winning moves. They served me well. They got me where I am today. Without them I would not be here now. But they don’t win me many battles anymore.
I’ve levelled up.
I need to learn new skills and different moves.
My son and I talk about how as autistic people this can feel tough. It’s like starting again from scratch each time we level up in life. Much harder than a computer game.
But with it comes new techniques, more resources, fancier strategies and greater opportunities.
We may be prone to keep on doing things the same way regardless. Sometimes I’m asked why I do things in such complicated ways, or why I always do things the way I do even if it’s not that effective.
Partly its the old message of “try harder” taken far too literally. Partly it is because it works – or rather it worked. But life sometimes moves on whilst I’m still doing the same old thing.
Sometimes I level up in life and don’t upgrade my skills in line with my progress. Mostly it is because it takes lots of conscious effort to work things out. There is always a logical reason for why we do things. Why change that? Doing things the same way is predictable and introduces a comforting, familiar pattern into an unpredictable and ever changing world.
We should be as proud of our life achievements as we are of our gaming ones. Finding that the old techniques no longer work could be a sign we’ve gone up a level. New opportunities are open to us and new resources are at our fingertips. It’s worth trying out some new moves.
I have no energy for masking at the moment and know that this means I will either appear totally unstable or I’ll muck up everything I have worked so hard to create.
It makes me want to give up as there seems no point.
Situations remind me that no matter how hard I try, how well I mask, and how fantastic my skills are – I am still really crap at being a neurotypical person. But I’m not neurotypical so why does it matter?
Because autistic people are not valued as whole people. My skills can be appreciated but the rest is still measured in deficits.
People assume I want to be more normal, or I’ll somehow learn to fit in. I don’t. I won’t.
I want the whole of me to be appreciated.
I often find neurotypical people dishonest, vague, inconsistent and tricksy. I still love many of them though. I accept I find those aspects of their persona difficult and confusing. I may not even like how they do things sometimes. Perhaps they occasionally annoy me. But I still love them and wouldn’t dream of writing them off as lesser, or as a broken version of me.
We are all perfectly imperfect human beings.
That’s why I’m fed up of being autistic today. I’m tired and overwhelmed and have no fight left. I get more tired anyway because my brain does so much more processing. On top of that I have to put all that effort into fitting in so I’m allowed to have a go at normal stuff like work and friendships.
My brain rarely rests. My body is usually alert to danger and ready to react.
Most people don’t realise this, and when I end up having to tell them so they’ll stop unintentionally hurting me, I feel humiliated and reminded of how the world is not designed for me.
That’s why I’m fed up of being autistic today.
So I’m taking it easy. I’m cuddling my dog. I’m taking care of myself and hoping tomorrow will feel better.
Self-care is the only way. I have a capacity for joy that others may never achieve. I seek out those sounds that reset my soul. I notice the patterns the rain is making on the window and trace each tiny droplet until it has my full focus. I read those comments that remind me I am not alone. I move in ways that reminds me I am in here – I have a right to be alive.
I rest, I recharge. I don’t plan my next battle. I remind myself that this neurotypically biased world is not of my making. I look at the birds and the trees and I reflect on the words of Mary Oliver. I remember where I belong.
My dog has just come in and jumped up on the bed to see me – I can smell the weather on her. It feels exciting to be able to tell that autumn is approaching, just by smelling my dog!
We take the same walk every day, down the track and across the field to the little piece of woodland that looks out over the meadows to the distant river and castle. I’ve walked this route for 20 years – either with Blaze, or with my previous dogs. I never get bored of it though, and I take such delight in how it is always a different experience. A good, solid, natural, different experience each time; a difference that is meant to be. Rather than a man-made, enforced, upsetting of the natural order, type of different experience, that makes people think I’m typically autistic and “don’t like change”.
I notice the tiny insects; I hear the far away birds; I smell which animals have passed by. This means I have a whole world open to me that others miss – it is like a great, exciting secret between me and the Universe. It feels special and precious, and an honour. Sometimes my interest and curiosity are stimulated, and I observe and study and wonder at the natural world. Sometimes I just let my senses take it in and I don’t engage my thinking brain at all. The power of my senses gives me respite from the endless mental processing I have to do in order to function the rest of the time.
The physical power of music moves me. I can reset my dysregulated body with just one, single, repeated noise that has the power to rebalance me. I can listen to an orchestral piece and take in the enormity of it, like an overwhelming wall of sound – or I can follow the different instruments, interweaving and passing the melodies and harmonies back and for between them. No tune ever sounds the same twice. Music creates in me something that can’t be captured in words. I see musical chords in colour – and when I see these colours in nature, I hear them in my soul.
My senses work differently to many people’s. I can feel pain and fear from sights and sounds that others find mundane or inconsequential. This can be overwhelming – and other people frequently don’t notice the extent of my suffering. But I can also become overwhelmed by the joy and beauty I discover through my senses. Sometimes I secretly smile inside because I know that I may look calm, bored, or even detached to a casual observer; but in my soul I am full of joy, I am experiencing psychedelic colours; orgasmic noise; and fragrances that cleanse and purge my body and mind.
I can heal my painful and distressing sensory experiences.
I can listen to music; I can walk; I can smell lavender to calm me, or sandalwood to help me think.
I can crunch on pickled onion crisps and allow the astringent flavour to cut through my brain fog and overwhelm – and reconnect me to the world again.
I can listen to the same glissando and allow it to lift my mood, exactly in tune with the rising pitch.
I can move my body so that I know it is me and I am in control and there is something predictable and safe that I have agency over. It makes me be “me” again – I fit back in to the world that so often overwhelms and alienates me.
I am privileged to have a sensory system that can bring me such joy and healing.