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 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!

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.

“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.