Categories
sensory trauma

The Sensory Pain of Shopping

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:

  • Soft material
  • 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
visit Autism Wellbeing’s Facebook page for more tips

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.

Photo by Oleg Magni on Pexels.com

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 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.

Easy!

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…

  1. 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!)
  2. What do we all like?
  3. Not chocolate…one of us can’t eat it
  4. Not rice pudding…the texture – eugh!
  5. Nothing with gelatine … we are all veggie
  6. ……

“Bing Bong”

“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.

Photo by Pixabay on Pexels.com

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.

Sensory Trauma image by Autism Wellbeing

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.

Be kind…

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.

To learn more about Sensory Trauma visit

https://www.autismwellbeing.org.uk/sensory-trauma

Categories
5 minute read Autism sensory trauma

Sensory Trauma

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.

The answer:

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!  

Aaaargh – It’s got a face!!! A vacuum cleaner that wants eye contact!!!

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:

For USA based people please use https://www.amazon.com/Sensory-Trauma-DIFFERENCE-EXPERIENCE-Wellbeing-ebook/dp/B08JKW5H1N/ref=mp_s_a_1_2?dchild=1&keywords=Sensory+trauma+autism+sensory+differences&qid=1601370659&sr=8-2

Categories
5 minute read Autism

Sensory Joy and Healing

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.

Categories
Uncategorized

Zoom Fatigue

A new expression has entered our vocabulary since so many of us have been working from home.

“Zoom Fatigue”

The BBC shared some thoughts on what this is, and why it happens in a recent article:

https://www.bbc.com/worklife/article/20200421-why-zoom-video-chats-are-so-exhausting

Simply put, “video chats mean we need to work harder to process non-verbal cues like facial expressions, the tone and pitch of the voice, and body language” according to Gianpiero Petriglieri, an associate professor at Insead. Paying more attention to these consumes a lot of energy. “You cannot relax into the conversation naturally,” he says.

Many of us will also spend time awaiting calls; ensuring our technology is working; and that there are minimal distractions. This can add layers of anticipatory anxiety and stress to an already energy sapping process.

According to Andrew Hines, assistant professor at Dublin University, and PhD candidate Phoebe Sun; we can improve our video call experience by scheduling shorter meetings. A lot of what determines how fatigued we become is based on what we are listening to.

The voices transmitted through the internet in real time are unedited and therefore crude to our ears. That is why we can wile away an hour listening to a podcast interview but feel drained after a video meeting – even if we didn’t have to contribute.

https://theconversation.com/zoom-fatigue-how-to-make-video-calls-less-tiring-137861

Their article describes how subtle sounds such as key tapping and swallowing sounds will be captured and amplified through our laptops or other video call making equipment. Squeaky chairs, eating crunchy snacks and slurping coffee can sound to the listeners as if you are chewing in their ears. Our brains respond to annoying, unnatural and unexpected sounds and force us to focus on them. The ability to filter out information is significantly reduced due to the lack of spatial cues and the loss of our ability to recognise the direction of a noise.

Network delays can cause speech; gestures; and meta-communication – all those “Mmmm”, “Uh-huh” and nods of agreement, to become out of synch. Again, this adds to the video call experience being exhausting.

So what has this got to do with autism?

I enjoy writing about shared human experiences. From my very first blog back in March, I recognised the parallels the social impact of the Covid-19 pandemic may have with some autistic people’s everyday experiences.

I am sure that those of us taking part in frequent conference calls will understand the phenomenon of “Zoom Fatigue”. Those of us who are also autistic may well draw analogies with our usual face-to-face social interactions. I’d like to share my personal reflections on this to offer an insight into a world you may not have considered…

When I am in a face-to-face meeting I experience all the same challenges as many people do on a video call:

  • I cannot filter out background noise or recognise spatial cues.
  • My hypersensitive hearing causes me to focus on all those annoying breathing noises, the slurping of drinks, and the screeching of moving chairs – with equal intensity.
  • Awaiting meetings is stressful. This anticipatory anxiety boosts my already high levels of sensitivity even higher.
  • Eye contact feels overwhelming and painful. But unlike a video call, I can’t slap a post-it note across someone’s face to avoid looking at them!
  • My brain processes visual and auditory information at different speeds which can cause difficulties and a lag in my understanding.
  • Knowing when it is my turn to speak takes effort.

Is it any wonder that I am so exhausted after ‘normal’ social interactions? My challenges aren’t because I dislike people, or I don’t understand the rules of conversation. They are processing issues.

What helps is the same courtesy and good humour we have on conference calls. And an awareness that this may feel as clunky, awkward and never-ending to me as many of those video calls do!

Categories
5 minute read Coronavirus

Autism and making sense of the “new normal”

My  son asked me to take him to Tesco’s as he hasn’t been out in  public since March. He wanted to know how social distancing works and how our local supermarket looks.

Supermarkets are my biggest sensory nightmare – in fact, when I lay awake in the middle of the night, filled with that particular anxiety that only visits you in the wee small hours; the scenario I play in my head usually escalates along the lines of:  “You know that crap thing you did yesterday at work Emma? – Well, you’ll probably lose your job. – And then you won’t be able to pay the mortgage. – And you’ll lose the house.  – And you’ll have to get a job in Tesco’s!!!” The ultimate peak of this catastrophising mountain that I create out of a very  insignificant molehill almost always includes me internally watching myself experiencing total sensory overload whilst forced to work in a supermarket.

So I mentally prepared myself; made sure I felt regulated and  able to cope with the sudden bombardment of sensory information that would hit me and my son; took a deep breath; and in we walked.

grocery cart with item

It was tough.

I patiently explained; repeatedly, that:

“No they are not deliberately being (insert an expletive of your choice here) – there are lots of reasons why people aren’t following  the arrows”

and

“Some people may be feeling overwhelmed like us – there’s lots to think about – all the arrows, and the 2m distancing and trying to find your shopping – they possibly don’t even realise they are going the wrong way and standing too close to us. I’m sure they’re not doing it to be rude”

But inside I shared my son’s exasperation and was glad that my focus was on making the shopping trip a learning experience for him. It helped me push my own frustration, confusion and fear to one side. Afterwards he said to me “Mummy, I’m glad we did it but I don’t think I’ll do it again”. Inside I thought exactly the same.

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If the world is a chaotic, overwhelming and confusing place in the “normal normal”, then the “new normal” is something else to behold if you are autistic. I have created lots of guidelines and rules to follow that  help me get by in day to day life. Stock responses to questions; routines for doing particular tasks; time for self-care and self-regulating; almost like an internal cognitive and sensory map of how everything should be. This helps me make sense of my world and function quite well. Without my “map” I would be stuck. Unfortunately, there is another way I can become unstuck, and that is when someone changes everything around. Suddenly my “map” is of the old normal and not the new one.

My brain and body want to operate in  the familiar – that is what they are programmed for, but the familiar has gone. Have you ever driven somewhere unfamiliar and relied on a Sat Nav? You experience a diversion due to roadworks or an accident, and suddenly you have to digress from your route and you realise that actually, you have no idea of where you are and how to get back on to your route and continue towards your destination. The Sat Nav keeps ordering you to do a U turn when possible and wants to keep sending you back to that closed bit of road you can’t go down. You can’t re-programme your Sat Nav because you are driving and you have to keep going forwards, not knowing  if you are getting nearer to, or further from your destination and as it is all so unfamiliar, there’s no way of finding out.

That sense of being lost happens to me frequently. If I didn’t programme my social “Sat Nav” that tells me how to interact with people appropriately I’d be constantly lost. If I didn’t “map” how places should look, smell and sound I’d have no idea if I was in the right place, doing the  right thing.

Looking for her ball

Other animals use “maps” too. My dog’s map is very definitely based on smells. She  recognises when other dogs have been on “her” favourite walk, and she often indicates to me where a fox may have crossed the track and is very helpful in identifying potential sites for my trail camera.

Migrating birds are able to sense the earth’s magnetic field and that’s how they can return directly to the same summer and  winter destinations every year without fail. Humans in fact have the same physiological adaptations as these birds, and I wonder whether that’s why some of us have a better sense of direction than others – perhaps the sense of magnetoreception that is found in some other animals is present in humans too?

All humans use our senses to help us know where we are in the world. But senses don’t work in isolation – they are closely linked to our memories and emotions.  Perhaps your child cried their eyes out when you washed their favourite cuddly toy because it didn’t smell right anymore. Maybe the taste, smell and texture of rice pudding takes you straight back to your school days and the dinner hall and all the associations you have with that.

Autistic people often have atypical sensory processing, which means we may need more or less sensory input than other people do. We can be hypersensitive and experience a normal television volume as deafeningly loud or we may be hyposensitive and not get dizzy from spinning round as fast as possible on a roundabout. This sensitivity varies from person to person, sense to sense, and moment to moment, and often becomes more extreme in times of stress, when adrenaline kicks in and starts triggering that fight, flight or freeze response we all get from time to time.

I expect places to smell, look and sound a particular way. I need them to, so that I know how to interact with them. When things change, I feel unsafe because the predictability and familiarity has gone. My map and rule book may as well be thrown away and I have nothing to replace them with. That is why I can become overwhelmed in certain situations – it’s not about disliking change, or needing routine because I am some type of control freak (and with a nod to any control freaks reading this – I personally can’t see why being a control freak is such a bad thing anyway!). I can only function by preplanning how to do things. Knowing what to expect is a great help with this. Whether that is planning a routine for my day, or having an agenda for a meeting in  advance, or rehearsing in my head how to handle a situation – it all helps me function and thrive. My sensory “map” helps too.

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Sense of sight.

I love that I spot the finer details that others miss – like the hairs on these newly unfurled beech leaves. I can proof-read written work quickly and accurately because mistakes jump out at me. Unfortunately, this also means I can’t ignore or tolerate things that are out of place. Someone else rearranging my things very slightly, does not annoy me because they look a little bit different. It annoys me because they look completely and utterly different and like a totally different thing that I have to learn about from scratch all over again! In these Covid 19 times – if you wear a face mask then you don’t look like you and I will probably not recognise you. I am the person who thought she had a new colleague at work and went through the painful small talk and introductions process a second time with someone I had already done it with – they had just had a new haircut that’s all!!!

Smell.

This is the sense I am currently struggling with. It is a sense that connects straight to our emotions. People smell different at the moment and this is unsettling. They are leading different lifestyles (maybe they are working from home, have changed their diet, are exercising differently and have different stress and other hormones raging through their bodies). They smell more strongly to me because I’ve got used to avoiding them! This double whammy of ‘different’ and ‘stronger smelling’ makes going out feel very overwhelming. When people smoke, and wear perfume/aftershave then it all becomes too much to process and I feel myself switching off in order to cope or becoming so overwhelmed I can’t think or talk in words.

Hearing.

Although my house is rarely quiet – I have a teenage son who enjoys making a lot of noise at times. I can control the amount of noise coming in to my ears and brain, to some degree. I can wear my noise cancelling headphones and the noise in my house is fairly predictable – although the thunderstorm the other night made me almost jump out of bed! In town, the noise comes at me from all angles. Sudden alarms; shouting, laughing and talking; traffic noise and so on. The cacophony of noise is like a solid wall of sound that hits me full on and I can’t distinguish the bits I need to listen to.

My other senses are also affected by the “new normal” and its not a specifically autism related issue. Plenty of people are finding car journeys are making their children feel travel sick – normally they are fine, but they’ve got out of the habit of traveling in a moving vehicle. Many of us are enjoying the peace and quiet; we’re finding the reduction in social pressures has been a relief and a break from the high intensity lives we often lead.

Many of us will find the lifting of restrictions challenging and they will take some getting used to. All of us have different sensory preferences – regardless of our neurology. Some of us will find the fluorescent lights in shops way too bright and distressing when we start visiting towns again. Some of us will feel anxious when travelling because everyone seems to be driving so fast. On top of this are the social distancing rules – and the way they change, and some people disregard them. I have made my own rules for coping with this:

  • Safety First! If someone comes too close to you in a shop, it may be best to move away from them even if you were there first. They may not have noticed how close they were, they may have difficulty judging distances, or they may not care. What is important is that you are as safe as possible.
  • It is OK to feel annoyed. It is reasonable to expect other people to follow rules.

I am taking this step by step. The sensory processing aspect is difficult for me – I’m dreading the day we are allowed to hug people again – what if someone wants to hug me and I flinch? What if they touch my bare skin, and they smell of perfume and I can feel their breath?!!! I don’t want it to be noisy and bright and smelly. I want it to be the same and predictable and familiar and I think I’ll stay in and just go on the internet and write, and message my friends from a safe distance! I can’t predict how this “new normal” will look and I’m out of practice with doing people things. When I do interact with people I remember why I find it tough – they overstimulate my senses, and confuse my brain with their inconsistent rules, they have hidden agendas that I don’t intuitively understand and I am reminded at how I’m just not very good at being a normal person! After spending time away from my own little world at work or visiting a shop, I am exhausted.

Hope…

But I will continue with the self-care and show myself the same compassion I have used towards myself throughout lockdown. I am not alone in feeling anxious and overwhelmed about this. I am relieved the restrictions are being lifted little by little. I can get used to the “new normal” little by little too.

The kindness and positivity seen in society at the start of lockdown has appeared to shift into anger and disregard for others. I hope it is just because people are fed up. Maybe everyone is scared by the changes? As lockdown eases, I am glad that I have coped and got this far. The world is going through unprecedented times and who knows what will happen next. I have learned so much about myself and how resilient I am and what I need to do to take best care of myself and family.

The bits of lockdown that I have most enjoyed, I will continue to do. My Saturday morning baking, my walks in the woods, the friends I message and spend time online with. I will continue to write the blog that I started in lockdown, and I will continue with being kind to myself and others.

Maple, pecan and apple Bakewell – my invention this morning!

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Why I love motorcycling…

Riding back over the mountain earlier, a pair of Red Kites swooped down low in tandem in front of me and majestically soared back up high into the bright blue sky. I was close enough to see their individual talons and notice whether either had a tag on its wings. There is something about the solitude of motorcycling and being in the scene rather than observing it from behind a windscreen that makes my heart soar, like those Kites, every time I ride.

Not one of the Kites I saw on my ride today but one from at home in my village. I have written about Red Kites in my wildlife blog http://www.offdowntherabbithole.org

My love of biking was sparked as a child. I spent those long school summer holidays wandering around on my own, down on the beach or in the park; or maybe I’d cycle the 15 mile round trip on my pushbike, to Brean Down, a local beauty spot sticking out into the Bristol Channel. I’d climb along  to the old fort where I could hide and watch the rabbits and avoid the wild goats! (wild? – these were genuinely absolutely livid, and I felt like I took my life in my hands every time I ran the gauntlet through these hairy, horned, feral beasts). I’d make sure I was home in time for ‘Junior Kickstart’ though. This was a 1980’s British TV show and an offshoot of Kick Start – a televised trials bike competition where competitors would skilfully make  their way around and over various obstacles as quickly as possible without touching them, knocking them over or putting their feet down. I can still sing the theme tune 30+ years later – along with the revving engine noise at the end!

I had to make do with bicycling when I was young. We lived in a semi-detached house in a town and there was nowhere to ride an off-road bike. And furthermore, it would not have happened because I was a girl. I wasn’t a typical girl mind. I asked my mum what I was like because I know I never played with dolls or wanted other popular 1980’s girls toys, like a ‘Girls’ World’ – in fact I found the idea of having a severed head (albeit a plastic one) in my bedroom that I could apply make up to and do its hair, quite repulsive. I did have a Cindy doll – I cut its hair off and knitted it some survival clothes for having outdoor adventures in, like being lost in a jungle or stranded on a desert island. My favourite things, according to my mum, and she was absolutely spot on; were reading and cycling. I would get on my bicycle and disappear off for as long as possible, not considering the fear I instilled in her by cheerily recounting how I’d cycled to the next town along the main road and then climbed a hill or gone looking for creatures in the sand dunes. I was an extremely accident-prone child and had a tendency to go off in pursuit of whatever it was that took my fancy that day, with no consideration for safety or telling someone. There was no way I was having a motorbike.

I had my first ride as a pillion passenger on a family friend’s motorbike. I remember how it felt sitting on the back and the pull of the various forces working on my body as we accelerated. I knew at that moment; I would have to have my own motorbike someday. It was all the fun of bicycling but with this added ‘something’.

When I was 18, I bought a moped. An orange Suzuki FZ50. I lived in a town near the Quantock hills and I’d ride up there and wander around, enjoying the solitude away from the busy streets and the flats where I lived. I loaned that bike to a ‘friend’ – well it was someone who lived in the flats who I hung out with. They disappeared off on my bike and I eventually found it dumped and broken. I saved up and bought a Honda step-through – one of the most popular motorcycles in the world ever. The classic C90 in red, with fairing, top box, leg shields – the full works. This bike wasn’t a ‘twist and go’ like the moped,  but had 3 semi-automatic gears where you pushed the gear pedal to engage in a gear but without the need to hand operate a clutch lever. I used this bike for my daily commute to college and it ate up the 13 mile journey easily. However, I had decided that travelling to Taunton every day was tiresome and I was offered a room in a shared house belonging to someone on my course and I moved in. I was riding back to my new pad one evening and a young man shot through a red light and I hit the side of his car at 30mph and tumbled over his bonnet onto the road. We agreed to settle this privately and he gave me enough cash to buy my first proper motorbike; with manual gears, a kick start, and trail bike styling – I was about to realise my ‘Junior Kick Start’ dream with Honda’s XL100.

The Welsh Motorcycle Rally held annually at the Royal Welsh Showground near Builth Wells. I think this is 1995. Note how I never used to brush my hair!!! I do now – thanks to Mal (on the right) teaching me how to, and who I’ve chatted with about bikes for a very long time.

Up until this point, I had motorcycled alone, much like I did most things in life. One night in January 1994, with my arm in a sling from the aforementioned accident, I turned up at a friends’ house. John, Chris and Matt were guys I knew from my old town and had also moved to Taunton and were at the college, and they had planned a night out. Did I want to come along? I decided to give it a try and when I arrived I found that everyone had brought something to drink before heading for town. I’ve never been good at ‘getting’ this type of social etiquette and I looked around the room and asked whether anyone wanted to go halves with me on a bottle of red wine from the off-licence. This one guy said he did and we went off in search of alcohol. He asked me about my injury and we got talking about motorbikes and have never really stopped since. Mal and I have just been sat talking about bikes over lunch in our garden and we both still feel the same about life, motorcycles and each other 26 years on.

I hadn’t taken my bike test at this point because I had a full car licence and you could ride on L-plates with that. I decided to take  my CBT and test, and passed first time that April. My first ‘big’ bike was the little Kawasaki Z200, I hope my husband has forgiven me for spraying it matt black. It was a lovely bike and took me on all sorts of camping trips and to rallies and eventually when I moved to Bristol for University, it lived in my front garden and was used for getting around the city. I used to ride to West Wales where Mal had gone to pursue his studies in Lampeter. I discovered the joy of having long rides – and my goodness, everything feels like a long ride on a Z200! I had read Robert M. Pirsig’s Zen and the Art of Motorcycle Maintenance and my head was filled with tales of the open road and philosophy. I still have a copy of this book on my bedside table and I’ve re-read it at various points on my life and I always find something new that resonates with me. Pirsig was an extremely intelligent, articulate man who experienced treatment with electroconvulsive therapy back in the 1960’s when he was diagnosed with schizophrenia. Every time I read his books (Lila: An Inquiry into Morals further explores the concept of quality started in Zen and the Art of Motorcycle Maintenance) I reflect on how similarly we see the world even though we are world’s apart. I would have loved to have a conversation with him about so many things – I’d love to know his thoughts on autism.

Although Mal and I rode together either as pillion on each other’s bikes or solo, I never fancied joining a club or gang. It wasn’t just my gender – although I must say, most images of biker girls do not show appropriate safety gear in my opinion! I have just never been part of any ‘scene’. When I moved to West Wales there was quite a few bikers. Lots of students, a local MAG (motorcycle action group), a back-patch club on the coast and a NCC (National Chopper Club). There was a MCC around Lampeter at that time but I’ve always been put off joining any clubs. The back-patch MC clubs are generally male only (there are a couple of female MC’s) and the MCC’s have never appealed either. Mal and I rode around and lived a simple life and we hung out with other people occasionally and life was good. I had spent a good few years by this time with only two-wheeled transport. I had a full car licence but no car and I rode my motorbike day in, day out. Whatever the weather and wherever I needed to. We rented a converted barn in the middle of nowhere and had no electricity and only spring water. There was no road and the track was just about passable, and allowed me another taste of my ‘Junior Kickstart’ trials riding experiences. My favourite ride was over the hills to Lampeter and on a fine day I’d take off my helmet and ride along the ancient roadway, wind in my hair and a song in my heart.

I’ve never been one for fashion or dressing up, and motorcycling suited me for that reason too. I wore my bike gear all the time. No tough decisions on what to wear each day, no not knowing whether I felt comfy or not – I was always comfortable, my bike gear moulded to fit me and didn’t have to be washed so never smelt ‘wrong’ or felt itchy. It also suited living in a barn with no electricity where we relied on a rayburn and gas lights and candles. I’d ride to town and carry home a week’s worth of shopping in my panniers and rucksack, and strap a sack of coal across the saddle.

Me sat outside Mal’s flat in 1994 on my Kawasaki Z200. I rode in all weathers, hence the ex-army parka

I opened by describing how being ‘in the scene’ rather than observing, was so important to me. Thank Robert M. Pirsig for that one. Riding a motorcycle is an incredibly ‘in the moment’ type activity. I have practiced mindfulness for a long time, and had an interest in meditation, and philosophy, and science for even longer. When I ride, I can only think about the present: I can wonder, and explore ideas, and contemplate and muse; but I rarely reminisce, or worry, or replay past events or plan for the future. You have to be present because you are on two wheels and travelling at speeds of up to 70 mph (or whatever the legal limit is). If you are not totally and utterly focussed, it is likely you will have an accident. Plus, why would you want to miss a single minute of that wonderful feeling?

So what is it that is so fantastic about biking? For me it’s not the lifestyle, I’ve never been one for conforming to any type. Although, the camaraderie is like nothing else. This morning I know that every biker that raised their hand to acknowledge me, had that look in their eye, and probably a smile on their lips that said “This is fantastic isn’t it?!” I’ve always felt accepted by other bikers, my autism doesn’t even seem to register because it’s about what we have in common not what our differences are. I’ve met lots of different people who ride bikes and I’d say that many of them would be seen as eccentric or non-conformist. It’s fine to meet a biker you have never met before and launch into an enthusiastic tirade about your ride, or their bike, or ‘did you just see that idiot pull out in the Volvo?, or even the cake you just had with your cup of tea. Small talk doesn’t seem necessary and this aspect of biking has always appealed to me too.

The most significant part of biking now makes more sense to me. I’ve always recognised there was ‘something’ going on, on that very first ride as a pillion passenger. Motorcycling affects every one of my senses in a most intense way. It is the most holistically satisfying activity ever. It regulates my emotions and senses like nothing else. Harley Davidson and the UCL have recently conducted scientific research into the mental health impact of motorcycling and the findings showed that the benefits are more like those of exercise (reduction in stress hormones etc), rather than being similar to having a drive in a car. Any biker could have told you this! I’ll describe how motorbiking effects my senses:

Vision: There are so many styles of motorcycle to choose from. I’ve owned and ridden all sorts, the machines I’ve described in this blog and many more besides. I do like a trail type bike personally. I like to sit upright and be high up and get a good view over the hedges. My latest bike is an Aprilia Pegaso Strada – a kind of adventure bike machine. Bikes are beautiful to look at and Mal and I sat just staring at his Enfield bullet and it’s wonderful mechanical simplicity and style.

Smell: Who doesn’t love that smell of hot engine, petrol and oil? It is the most satisfying smell to open your garage door to.

Auditory: I love a big single cylinder engine. I had an XBR500 café racer style Honda before the Aprilia and that too had a wonderful slow, deep, thump of a big single cylinder motor.

Touch: The feel of wearing clothing that is solid, fits well and has no fancy bits to irritate me is great. I love the sensation of sitting on the bike and being able to feel things with the extremities of my body. The clunk of the gear pedal, the twist of the throttle and the wind in my face.

Taste: It isn’t a proper ride out if you don’t have chips or a cup of tea and cake! Mal says I should write a book called ‘Around Britain by cake’. Whenever he recounts a past ride-out I’ll always remember where we stopped and what we had to eat there. Food just tastes so much better when your senses are switched on by the joy of riding.

The next 3 senses are the ones less discussed outside of autism circles. These are the important ones for me though when it comes to motorcycling:

Vestibular: This is the sense of where your body is in relation to gravity. This is the sense that biking really excites in me. I like speed but I prefer acceleration. That pull and push of speeding away from a standing start just gets me going every time. When I am moving, my clumsiness disappears, and I can judge speed and distance in a way I just can’t when not on the bike. The forces working on my body as I travel switch something on in me that lasts much longer than the ride itself.

Proprioception: I mentioned my clumsiness and if you saw me off the bike you’d probably advise me that motorcycling is not for me! The clothing helps give me a sense of where my body is in relation to itself. I feel sensations in  parts of me that I didn’t know existed otherwise. Having recently taken up riding again after a break, I realised that the vibration of riding and the repetitive movement of using my hands on the clutch and brake levers give me a sense of where my forearms are. I’d forgotten I had forearms to be honest and I frequently have bruises around my wrists where I knock things because I don’t notice in time. I need to put a lot of movement into my arms to notice them – I wonder whether that is why certain repetitive movements involving shaking or flapping your arms are so common in autistic people? The vibration (that favourite big single-cylinder engine again) gives me a sensation throughout my body. It’s neither pleasurable nor uncomfortable, it just seems to vibrate everything awake and I know where my body is for ages after a ride. I have certainly been less clumsy during those periods in  my life where I rode daily.

Interoception: This is the sense of knowing what you feel – whether that is bodily functions like being hungry or your emotions. I have weak interoception and motorbiking awakens a pleasant feeling in me. It’s not a strong emotion, it’s more an inner peace where I know I’m ok, I know I’m contented and I know that I am part of the world.

And now we are 3. This is me earlier this week with our son riding pillion. He is 14 and has an off-road bike he is learning to fix and ride.
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“Is dinner ready?” and what it’s like being a mum.

Introduction

“Am I a good mum?” I asked my son.

“Yes” he replied, “you’re always kind and don’t give punishments for no reason”

I’ve been a mum for quite a while now and I’m wondering when my natural maternal instinct will kick in! Actually, I don’t expect it to. Now that I understand my autism diagnosis more clearly and recognise how my sensory processing works and in particular my interoception – or sense of knowing how I feel; I am as likely to feel a natural mother as I am a natural teapot, or natural anything else.

If I don’t feel like a good mum then does that mean I’m not one? Of course not. I often don’t feel like I need the toilet – but I still have to go regularly! I did not feel that I dislocated my knee when it was twisted out of shape. And I may not experience feelings of intense love or anger or regret, but I know what these emotions are and although the feelings may not be there for any of these examples, they are still valid and very real experiences, albeit “felt” in a different way.

I “know” that I need to use the toilet regularly, I need to eat regularly, I need to be aware of my body and potential injuries. I “know” that when something upsetting happens I may not feel a strong emotion in my body but my sensory processing may become hypersensitive sometime later that week. I know that eventually, after a lot of intense cognitive processing, I may have a sense of an emotion – often long after the event. Or I may not. This is just how I am. I also know with every ounce of my being, that I love my family.

I was delighted and surprised when I discovered I was pregnant. It was unexpected and we had experienced previous losses. I enjoyed the experience of being pregnant and was super-fit and swam every day in the local pool – only just able to bend down and put my shoes on afterwards by the time I was in the last weeks of my pregnancy. I also walked with the dogs several times a day and was even riding my motorbike until the throttle cable snapped and I pushed it back into the garage where it sat for many, many years unridden.

My experience of birth was traumatic and lengthy. Eventually our son was delivered by emergency caesarean section. He was 11 lbs (5kg) and was certainly not going to come out via the traditional route. I remember desperately needing a can of fizzy orangeade and a ‘double decker’ chocolate bar straight after he was born and I begged my husband to get me them. I have never craved anything so fizzy and so orangey, so much in my life! My husband had to make a visit to the shops the next morning to exchange the new-born sized baby clothes for something that would fit this strapping lad.

We settled in to family life and I was very unwell for a long time and will forever be thankful for the continuous support my husband gave me to help look after both myself and our son. I have very few memories of family life, unfortunately, but I have lots to share about how we live; how we cope; and what we think about life, the universe and everything. Our family’s story is not solely mine to share and it is up to our son if later on he decides to describe incidents and events from his life or not. My own autism, and my own upbringing has influenced how we get along together. And this is what I will share in this series of blogs:

Our son always has this meal in this way. We hope that if he lives with a partner one day, they will make this for him too! As he has got older, the number of sausage funnels on the mash ship has increased – otherwise it is unchanged.

Food, eating and drinking.

Food is a huge topic to cover. We often take for granted that we eat our meals and snacks and hardly give a second thought to it. But there are multiple things going on with regards to mealtimes:

The environment – a familiar family meal at home, or a busy café, or eating whilst in the car, or on a picnic. The list could go on. These places vary in terms of social etiquette and sensory input. Anxiety levels can increase very quickly in certain environments because of the sensory processing demands (think scraping chairs on café floors, laughing customers and smelly food)

The ‘rules’ – when I was growing up, my family were very keen on table manners. I took to that quite well – I enjoy a rule and knowing how I ‘should’ behave. It can get complex though because rules can feel very contradictory to an autistic mind. “Eating outdoors walking down the street or sat on a bench in town is unacceptable and bad manners” but “Eating outdoors sat down on a blanket in a field is a picnic and a treat”. “You must use a knife and fork properly” but not for pizza, or for a buffet, or for the chip shop. But chips at home must be eaten with cutlery.

Interoception – knowing you are hungry, knowing you are full, knowing what you fancy to eat, knowing if you like something or not. Personally, I always opt for exactly the same thing when I eat out or I choose it before I get there. I know what I’m getting and I don’t have to make a complex decision based on what I feel like whilst in an overwhelming environment that is going to suppress any sense of what I feel anyway.

Choice – regardless of whether your interoception works in a way that indicates to you what you’d like to eat, choosing from potentially infinite potential meals is almost impossible. “What do you fancy for dinner?” is usually followed by my brain rapidly firing through the following thought processes:

What have we got? – I don’t know.

What should I be asking for? – Is there a correct answer I’m meant to know?

I know, what did I have yesterday? – I’ll ask for that.

And that is why I often eat the same things every day. I also tend to opt for carbohydrate rich, yellow, beige and white foods, and cheese. You know where you are with a white food. No one can hide something inside white food that you will come across unexpectedly. These foods are pretty safe. You know what you’re getting! It’s also easier to imagine what you want from a list of choices if that choice is limited to one colour. Less thinking!

Proprioception – coordinating cutlery whilst sitting up straight in a chair with the sudden smell of hot food wafting up your nostrils takes a lot of concentration! I do nothing intuitively or naturally and I need to constantly check where my body is . This is hard work.

Consciously coordinating chewing, swallowing, breathing and talking requires a great deal of focusing. It is easy to lose track and cough and splutter.

Taste – like many people, my sensory processing works in such a way that I can experience strong aversions to certain tastes whilst not noticing other tastes that some people find repulsive. I enjoyed licking door keys as a child and although I haven’t licked a key in many a year, I am tempted to do so just to get that hit of sour, acidic, metally tang that is both unpleasant and strangely alluring at the same time! My brain tells my body that certain tastes are not just unpleasant – they are dangerous, repulsive and should not be eaten. Fortunately, there aren’t that many tastes like that for me and I tend to prefer bland foods but I’ll enjoy a mild curry or chilli, but I will not go near tastes that ‘shouldn’t’ go together like sweet and sour food. What is more significant to me is…

Texture – the sensation of certain foods in my mouth is so extremely repulsive, I am struggling to write about it candidly whilst thinking of examples! Throw away your logic and consider mine instead for a moment… I like a jacket potato, I like chips, boiled spuds are fine too. Mash is not. They are all potatoes and I’ve had endless “but you like potatoes” type discussions in my life, but no one is going to convince me otherwise that mash is just potato and fine to eat. I will eat occasional mash – for instance on top of a cottage pie that my husband has made. That is because I know exactly what that mash will feel like in my mouth. There will be no surprises. “Just try a little bit” does not help me. Food is not consistent. Different brands of baked beans taste very different to each other, and with my poor interoception and ability to know whether I like something or not, how am I meant to know if someone has poisoned my beans, or if they have gone off, or just swapped them for a different brand? I know they are still beans and I like beans, but they don’t taste the same and that means something is WRONG!

Temperature – I need the temperature to be just right. I’m blonde – maybe its a ‘Goldilocks and the three bears’ thing?! If it is not just right, I won’t eat it.

The key thing to remember is that none of these variables are working in isolation. And that is why I can appear so picky about food. If a café has lots of music playing, and bright lights and smells of meat (which I don’t like) then it is likely that my central nervous system will be really fired up and working out whether I want to run away; freeze; or fight. I may become hyperalert and over-responsive to sensory information and find I can’t tolerate something I usually eat because it tastes different. Or I may shut down inside and be under-responsive and crave something strongly flavoured that registers on my taste buds. If I am stressed about something going on in my life, or it is a big day because of an interview or event, my sensory processing works differently too. This is not a conscious choice on my part but an automatic reaction driven by my atypical neurology.

I think the generation I grew up in was more strict about table manners and finishing what is on your plate and eating what you are given, without question. That helped me in some ways because the very strict rules meant I at least had some structure and predictability around mealtimes. However, the predictability was I’d end up being told off! Every single time. And that has added an additional component to my relationship with food. In the 1970s and 80s, sensory processing wasn’t understood like it is today, and I was viewed as fussy or a picky eater. We understand more about it now and I’ve been able to use both my own upbringing, that recognises the importance of structured mealtimes – and my personal insight, that recognises the challenges and distress of autism to inform how we have brought our son up.

In our house, we don’t make a big deal about food. It is a big enough deal already! We totally appreciate how our son may like something one day but not another day and how his logic for not eating something may not work along the same lines as our logical reason for why he should eat it. A balanced diet is important and we have had weeks and months where we metaphorically pulled our hair out thinking “he cannot just live on that for the rest of his life”! But he hasn’t. Eventually, whatever it was that drove him to need to eat a particular food or avoid a particular food has changed and he has tried something else. Here are some tips that we’ve used over the years:

  • Regulate your own emotions and senses before you begin. Then help your family regulate themselves.
  • Don’t panic (or at least don’t look like you’re panicking!). If your panic is sensed then stress levels will rise. If stress levels rise, whatever the sensitivity is may increase.
  • Choose your battles.
  • Keep mealtimes calm and never make any of it a big deal. Most children will not starve themselves to death. Talk to your health visitor or GP when you need to.
  • I imagine it is normal to feel powerless or like a failure or neglectful. Don’t compare yourself to other parents who talk about their ‘perfect’ sounding families and child-rearing skills.
  • If it works for your family and you are fulfilled and living life how you choose then consider carefully why you would do things differently just to appear ‘normal’.
  • Teach rules that are 100% honest and consistent and teach different rules for different scenarios e.g. eating with your fingers is fine at home but not at Nanny’s house because Nanny is old-fashioned and will view it as bad manners.
  • Make learning about food a family hobby or interest. Grow some food to eat. Cook together and don’t worry about experimenting as you don’t have to eat it! Bake a cake and mix the ingredients by hand and not a spoon – if you like the sensation. Learn about food groups and a balanced diet.
  • If a particular colour of food is preferred then find a balanced diet from that colour.
  • Never use food as a reward or a punishment. Ever.
  • If certain textures are preferred then find a balanced diet using that texture.
  • If cutlery is tricky to use then order food when you are out that doesn’t require cutlery e.g. pizza.
  • Choose your battles. It’s worth repeating!
  • Choice can be overwhelming and whilst we may think that giving a choice may make it more likely they’ll eat it, it may not. You could be just adding to the overload. We have a weekly menu up on the fridge. This means that meals are predictable with no nasty surprises and there is enough time to process what the meal will be and decide if that’s ok or if we want something else.
  • It is perfectly logical to like something in a café but not at home or vice versa. If you are a person who has to analyse and categorise everything to understand it. And you only see the bigger picture by first studying the smaller pictures in intricate detail, then you will notice when things are different or don’t go together.
  • Choose your battles.
  • Social eating is different to eating on your own or with your family – it can be very overwhelming and you may need to take time before and after to regulate your senses and emotions and those of your family.
  • Make your own rules. Who says you have to eat at a table? Or with other people? It can be nice, and it is seen as an important social occasion, but if at first all you can do to ensure your child is fed is to give them what they like, when they like it, where they like it then do so.
  • If using cutlery is difficult, risk assess whether they can use alternative cutlery. Maybe this will be specially adapted handles for knives and forks or even extra sharp cutlery that makes cutting easier. (like in the photo).
  • Use plate dividers to stop certain foods touching each other or use separate plates.
  • Don’t tease or point out things you find odd. Accept people’s preferences. (I need to have my burger arranged in a particular order, I only have a tiny bit of milk on my cereal, vinegar must never touch bread – yes, this is unusual but taking the mickey out of me for it just reminds me I’m different and makes me feel sad for being me)
  • Take it step by step. Why is your goal important? If it is about making sure your child is healthy then of course. If it is about conforming to what you think you should be doing as a parent then challenge yourself!

In our home, the aim is not to get our son to eat everything or eat certain things that we know are good for him. We offer simple choices between a couple of things that we know he likes. Whenever we introduce a new food we keep it laid back. Mealtimes may not be the best place to try a new food – keep mealtimes safe and predictable. Try new food as an activity on its own where it is fine to have an extreme reaction – positive or negative! It’s also fine to change your mind or try something at a later date. Our son knows that green leafy vegetables often taste bitter to children and that as he gets older the taste may change – he finds this interesting and is happy to consume spinach as part of a scientific experiment on taste and ageing.

Our family believe that food is an essential part of life. We need nutrition to live healthily. Apart from that we do our own thing!

We wanted sharp cutlery that would make cutting easier. We also wanted cutlery that wasn’t stigmatising to look at. This is a set of French made cutlery with a tiny bee on the handle which coincides with where your finger and thumb goes.