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5 minute read Autism identity

Body Image and Autism: a personal reflection…

Is your body an ok place to be?

Does it feel safe?

Are you even sure it is you in there?

Our body image is not just affected by the messages we receive from other people, but by our health, life experiences, upbringing, and personal values – and many more things besides.

Body Image has been a topic of concern for many years. We are bombarded with unrealistic images of unobtainable bodies whenever we switch on the television, view advertisements, or access social media.  

The image that we form consists of several factors:

  1. How we perceive our body. How thin, tall, fit, or attractive we are. This may be accurate or inaccurate.
  2. How we feel about our body. Do we like how it is and how it works?
  3. What we think about it. Perhaps we think we should be fitter or healthier, or maybe we’re just right?
  4. The way we treat our bodies. How we care for ourselves, whether we exercise, harm ourselves intentionally or unintentionally, our relationship with eating.

Autistic people may experience all the same type of things in life that affect their typically developing peers, and they will be subject to the same media portrayals of ‘perfection’’. In fact, autistic people may be more likely to experience adverse life experiences such as relationships breaking down; employment and school issues; and poorer health outcomes – simply because their particular neurology puts them at a disadvantage. The way each of us perceives, thinks about, feels towards, and treats our body is complex and made up of a multitude of different factors.

I believe there are some additional factors to consider for autistic people. We may be more likely to experience ‘face blindness’ and have difficulties recognising individuals. We often have strengths in focusing intently on specific topics of interest, we may experience perseveration and a reliance on routines and rituals that help us organise our worlds. This could be responsible for some autistic individuals becoming excessively focused on diet, calorie counts, or exercise regimes. It may make breaking habits that are harmful towards our bodies more difficult too. An autistic person’s sensory processing may impact on their body image as well.

From a sensory perspective, I’ll explore my own experiences and reflect on how they have affected my life.

Proprioception

This has a significant effect on my relationship with my body. My muted sense of where the various parts of my body are in relation to each other means I am frequently misjudging doorways and bruising my arms in the process; I trip over my own feet; and I lift and throw with totally the wrong amount of force required. I find negotiating stairs and escalators very tricky, and if I can’t see my feet, I may as well not bother.

These type of proprioceptive experiences are well documented in accounts from autistic people. They undoubtedly impact on my self-esteem. I am not graceful, or elegant; ever. I don’t dance in public, I’m rubbish at sport, and even walking across a room requires the same kind of internal self talk one would say out loud to a blinfolded person navigating the same route! What I think and feel about my body is never particularly positive. My perception of where my body starts and ends is muted too. I recently cleared out my wardrobe and found a coat that I had bought. It was way too big. In fact, it had always been too big and my husband recounted how I have always bought clothes of the wrong size.

The image I have in my head of my size is not accurate. Not just in the fairly typical way many of us look back at old photos of when we were younger and slimmer, and wish we were as “fat” as we thought we were back then. But in a very genuine way where I have no idea whether I will fit through gaps between cars in car parks, or be able to choose which clothes size to try on in a shop. It is not just a self-esteem issue where I exagerate my weight, but a fundamental difference in how my senses work. I have no idea what size I am – and all those other factors like peer pressure, the media, my health and relationships play into an already wobbly body image.

Interoception

Knowing how I feel inside, and which emotions I am experiencing, or what my body is telling me I need to do – eat, rest, go to the toilet, and so on – these sensations are frequently muted too. I don’t know if I like you, I’m not sure if I even like me half the time either!  

Until recently, when I looked in the mirror, or at a photograph, I had no strong sense that the image was of myself. I remember as a child thinking deeply about what makes people separate from each other. I must have been around seven years old (because I remember the exact spot in the exact street where this ‘revelation’ hit me) and it struck me that I was everyone else and everyone else was me. I cannot put it into words accurately, but it was an incredibly powerful experience. When I reflect on it, I still can’t quite capture what it was that I had discovered, but I know it is something to do with interoception and identity. I had incredibly clear ideas about who I was – I always did, but they were logical, thought-based, and completely detached from any feeling of who I was. I could have been anyone – where did Emma start and end?

This year I taught myself how to recognise myself. I had already begun a process of reflecting on photographs and noticing in a very mindful way that they were of me. I also built up to the point where I could see myself on camera for the inevitable conference calls the Covid-19 pandemic has forced us to  partake in. It was a painstakingly slow process, but I can now watch myself in a short film. Prior to this, I was filled with dread, horror and nausea whenever I saw myself. I could not connect in any way with the image in front of me and I found it terryfying that a stranger was saying my thoughts out loud, or was wearing my clothes.

I have embarked on a process of learning about my interoception. I need to take it slowly. Recognising my emotions and bodily functions as my own, feels as terrifying as when I recognised my outer body as my own too. On both occasions I experienced a massive sense  of overwhelm in the days and weeks after my sensory renaissance. A mixture of novel delight, fear, and wonder. Mixed with an almost painful sense of self-awareness. It felt important to gently nurture this and not push myself too hard.

My other senses play an important part in creating my body image too. All of us experience the world through our senses. When acting ‘normal for me’, my brain processes this sensory information in muted or intense ways, compared to typically developing people. When I have additional sensory, social, or cognitive demands to process, my sensory processing can become even more extreme. This means that my world feels inconsistent, unpredictable, and disordered.

The way my brain processes the visual information about how I look varies from day to day. Some days I can smell myself strongly – particularly if I have been unwell or terribly upset. I give off a distinctive chemical body odour. I can frequently hear my heartbeat and the blood rushing through my body. My sense of touch is hypersensitive, and I flinch at a light touch. This makes me upset because it appears like I am rejecting the very people I wish to seek comfort from. All of these factors influence how I perceive my body and how others perceive me. This impacts on how I am treated and how I respond to others too.

No reflection on body image would be complete without discussing food and eating. My gustatory processing works in such a way that I have very particular needs when it comes to flavours, textures, and combinations of foods. I have written about autism and food elsewhere, but in brief, I tend to prefer certain colours of food. I lack the imagination to think up original meals and tend to opt for familiar foods. My sense of taste fluctuates, and I can find particular flavours are so extremely unpleasant my body reacts as if I have been given poison!

My need for routine and familiarity (in order to calm my chaotic world) can result in restricted diets. My anxiety and sensory processing can encourage me to avoid mealtimes. As a teenager, my poor executive skills led to me being disorganised and eating quite a limited diet. This resulted in weight loss and poor health. My energy levels frequently soared then crashed in response to my unhealthy eating patterns. This probably had an effect on my emotions and self-esteem too.

Each of us will experience a complicated mix of factors all interplaying to help influence our body image. Our internal and external body awareness will give us a ‘sense’ of our bodies, and our thoughts, beliefs, and feelings about this will play a part too.

As autistic people we may experience additional influences on our bodies – in the form of our atypical sensory processing, and our need for routine, ritual, and repetition. We may intuitively know how to regulate our senses and emotions too. This may be in uniquely autistic ways. Many autistic people find repetitive movements, sounds, visual images, and other sensory input is fantastic for helping with focus, relaxation, stress relief, and joy. These activities can bring a sense of peace and predictability to our bodies and make them feel ‘safe’ and ‘connected’ to our whole self. This is certainly my experience anyway. Unfortunately, these activities may be seen as inappropriate, or a subject for teasing, scorn, or punishment.

Imagine living in a body that feels clumsily out of your control; that shifts its shape from day to day in front of your eyes; that reacts physiologically to the ebb and flow of a restricted diet and rigid exercise plan; and recoils  uncontrollably from flavours or touch.

Go back to my opening questions. Is that body a place that feels safe to you? Is it an ok place to be?  When what you ‘know’ doesn’t match what you ‘feel’, because you feel nothing but know everything – are you sure it is even you in there?

Is it surprising that so many autistic people are diagnosed with eating disorders, or self-harm, or are vulnerable to abuse? How do you even consent to another person entering the space of your body when you don’t know where that starts and stops?

Categories
Autism wellbeing Wildlife

Making Sense of Nature…

“Where’s the best place round here to see badgers?”

“I saw this bird, a bit like a sparrow but different, any ideas?”

“What sort of the poo do you think this is?”

I am frequently asked questions like these, and I’m absolutely delighted that when people have a wildlife-based query, they may think of me as someone who could help.

My knowledge doesn’t just come from having a good memory, and it certainly wasn’t taught to me in school. My passion for the natural world is lifelong and developed from a childhood spent reading – and walking about, noticing things.

I grew up in the days before we could conduct research on the internet, and I spent many hours poring over encyclopaedias, and also reading lots of fiction which seemed to include more descriptions of the specific species of plant and tree than many children’s books do these days.

I have always been someone who enjoys my own company and as a girl I would walk or cycle around the country lanes, sand dunes and beaches in my neighbourhood. I’d horrify my parents by disappearing off for hours on my bike to Brean Down, one of the Mendip Hills jutting out into the Bristol Channel near Weston-Super-Mare. My propensity for tripping over, falling off my bike, or otherwise ending up in some sort of scrape was well-known, and Brean Down was a steep climb with sheer cliffside drops into the sea, and was riddled with rabbit holes, just ripe for twisting an ankle in!

I’d sometimes cycle there at dawn or dusk and dodge the feral goats which stood intimidating tourists as they ascended the steps to the 100m summit of the limestone promontory. And then I’d secrete myself away and keep very still. The Down is a site of special scientific interest (SSSI) and has rare flora like the white rock rose. It’s also a great spot for watching peregrine falcons, kestrels and ravens. But the animals I wanted to see were the rabbits. They were incredibly common and if you sat very still and just waited in the crepuscular light, you would soon find yourself surrounded by bunnies. It always felt an utter privilege to be able to sit near them and a great use of my special ability of being able to blend into the background without being noticed.

This rabbit photo was taken in Gelli Aur Country park back in 2008. There has been a significant decline in rabbit numbers across the county of Carmarthenshire in recent years.

As well as an ability to silently disappear when I need to, I have a remarkable sensory processing system. Like many autistic people, my sense organs see, hear, and smell in a fairly average way. But my brain processes that sensory information quite differently. This means that some of my senses work in a way that is quite muted and requires lots of input to register a sensation, whereas other senses need hardly any information at all to register what is happening. This fluctuates and can become more extreme when I am under stress, worried or having to process lots of information (sensory or otherwise).

An example of where one of my senses may often be muted (or hyposensitive) is in my  proprioception – the sense that tells us where the various parts of our body are in space (close your eyes and stick your arms in the air – wave them about – whether your arms crash into each other or not is down to your proprioception). My sense of proprioception is responsible for many of my accidents when I trip over my own feet, misjudge a step, or bump into a doorframe.

On the other hand, my senses may by heightened at times (hypersensitive) – and this too has pros and cons. I can find the noise of a door banging closed, incredibly loud, to the point of it making me jump with fright and my ears hurt. But I can also hear the wasp chomping on the wooden frame of my living room window while it gathers material to mix with its saliva to help build its papery nest.

As well as having particularly keen senses, another trait of my autism is that I can’t filter out so-called ‘unnecessary’ information. I sense everything with equal intensity and importance. This can make me appear ‘lost’, confused or slow when I am in a new environment as I am taking absolutely everything in and trying to consciously work out which bits I should or shouldn’t be focusing on. It makes me a fantastic spotter of wildlife though! I will be the person who notices the Speckled Wood butterfly camouflaged on the woodland floor. My brain will not be fooled into thinking those patterns on the insect’s wings are part of the leafy detritus it is hiding against. My olfactory processing is so sophisticated I can tell whether the repugnant smell of rotting corpse is dead badger, dead deer, or simply a Stinkhorn mushroom.

Not everyone has a sensory processing system that works like mine does, but we can all ensure we take more notice of what is around us when we are out and about, and tune into our sensory experiences.

I have practiced Mindfulness for many years. It comes naturally to me, as I have always been someone who notices things.  Being Mindful means, you make a special effort to notice what’s happening in the present moment (in your mind, body and surroundings) – without judging anything. It has roots in Buddhism and meditation and there is good scientific evidence to prove its benefits. You don’t have to be spiritual, or have any particular beliefs, to try it. Mindfulness also sits well with me because my inability to filter things means I tend to be quite open-minded and non-judgmental anyway. I find Mindfulness particularly valuable because it reminds me to take a break from all the classifying and categorising and naming of the natural world, and just be in that moment, noticing it with my senses. Many people find practising Mindfulness is very good for their wellbeing. You can make time to meditate, or simply engage in parts of your normal daily routine in a mindful way.

For people starting out with a hobby like bird watching, or who want to develop more awareness and knowledge of the natural world, I would recommend taking a Mindful approach and just get out there, walk, and notice things. Don’t think about whether you recognise plants or animals, or if you can name them or know what they are. Nature can be enjoyed without any of these things. Try using each of your senses to notice what is happening around you.

Humans are currently said to have eight senses. The five we learned at school – smell, taste, touch, sight, and hearing. Vestibular – the sense of how gravity effects our body (our balance and awareness of spinning and jumping etc). Proprioception – knowing where the various parts of our body are in relation to each other. And finally, Interoception – the sense of knowing how we feel internally (our emotions and bodily functions like feeling hungry, tired or needing the toilet).

Interestingly, other animals have additional senses, and humans share the physiology that enable some of these senses too. Magnetoreception helps migrating birds find their way using the earth’s magnetic field. Thermoreception enables animals to detect heat and forms part of the infrared sensing systems found in some snakes and in vampire bats. Electroreception is well known in some sharks and other fish.

https://www.the-scientist.com/features/sensory-biology-around-the-animal-kingdom-32941

Here are some ways you may like to notice nature using your senses. I believe that with practice people can get more attuned to using their senses and it gives such an added layer of appreciation of our natural world:

Vision – stand still and notice how many different species you can see. Don’t worry about recognising them. You may be surprised at how many different living creatures you are sharing your space with at any given time.

Smell – notice a smell and move about until you can find the source of it, notice where it gets stronger or weaker. If you find something really smelly, like honeysuckle or even fox poo, focus on the aroma and then notice how far away from the source you can get while still smelling it.

Hearing – pause and notice how many different sounds there are. Let yourself notice each one. There may be sounds in the foreground like your breathing or footsteps, as well as sounds further away like birdsong, or a nearby road. Notice any background noise like the wind or water.

Taste – if you are confident at safely identifying wild food, then enjoy a blackberry or other fruit. Otherwise, practice with fruit and veg in your garden.

Touch – feel how cold the water in a stream is. Notice how things that look similar, may feel different. Find white clover and red clover in a field. Stroke the stalks of each and notice how one is hairy and one is smooth – you will forever be able to impress others with your knowledge of clover identification even when there are no coloured flowers to give the answer away!

Vestibular – close your eyes and notice whether you can sense if you are at sea level or much higher up.

Proprioception – bring your attention (without looking) to various parts of your body and see if you can notice where they are. Let the feel of the ground under your feet and the air against your skin help you notice where the respective parts of your body are. Realise you are part of the natural world.

Interoception – notice how you feel when you are in the natural world. Does it bring you joy, curiosity, peace?

Not only does following a technique like Mindfulness help us relax and connect with nature by disconnecting with the stresses and strains of our busy, daily lives, it helps us recognise how much is going on all around us all of the time. Once we start recognising this, it is more likely we will notice those elusive badgers, otters or whatever else we hope to spot. I have genuinely seen people walk past the most incredible creatures because they have been so focused on their phone, or their conversation, or lost in their own thoughts.

As well as practicing noticing things, its worth studying and learning all you can too. I bought my very first nature book whilst on a caravan holiday as a six or seven year-old. I remember going into the book shop in Williton, on the edge of the Quantock Hills and using my holiday pocket money to buy a copy of the Usborne Spotter’s Guide to Animals, Tracks and Signs. This is my favourite Spotter’s Guide because it opened so many doors for me. It wasn’t just a simple identification guide that helped name the species I was lucky enough to spot, it taught me the craft of getting up close with nature by understanding it.

Here are some of my favourite pages:

Gaining knowledge of how animals live, as well as what they look like, increases your chances of spotting them. Habitat, diet, and behaviour are all important parts of this. Understanding these helps identify animals and plants too. It increases the likelihood of seeing them when out and about. Consider my trip to Brean Down to watch my beloved rabbits. I knew that they would be out at dawn and dusk – I understood their behaviour. I knew there would be a warren on the isolated headland – I understood their preferred habitat. There was plenty of grass for them to eat – diet. Rabbit poo is decidedly easy too spot and correctly identify. My rabbit spotting trips are an obvious example of using knowledge to increase your chances of seeing a wild animal, but the principle is the same for other animals too. Though it provides no guarantee of a sighting!

Otters are a favourite animal of mine, but have frequently eluded me, despite my extensive knowledge. I now live within walking distance of otters and I’ve been out before dawn, I’ve set my camera trap up, I’ve even photographed their footprints, and smelt them. But my only local sighting was a chance encounter in a pond, rather than in the river where I know they live.

These tips that I’ve given about studying animals can act as a useful checklist for ensuring correct identification too. Sometimes we may spot a creature or plant that we are unfamiliar with. It is very easy for wishful thinking or past knowledge to affect our judgment when trying to identify it. My tip is to jot down exactly what you see. This is where another of the advantages of my autism comes in. Sometimes autistic people are labelled as great with the finer details but not good at seeing the bigger picture. Personally, I would disagree with this. I am very good at seeing the bigger picture – but I make it up out of all the tiny bits. This takes time and if you are after a quick answer before I’ve processed all the individual pieces into an overall scene, then you may wrongly assume I haven’t seen the bigger picture at all. My ability to appreciate every aspect of the world without judgment also comes into play – that lack of ability to filter information I described earlier. Autistic people are often “bottom-up thinkers”. The  American scientist, Temple Grandin describes:

“I’m good at trawling through the Internet through vast amounts of journal articles and then pick out what are the really important things. I then synthesize all of this resource down into one short paragraph… That’s something that I’m good at doing… I’m a bottom-up thinker—I take the details and put them together.” 

https://www.forbes.com/sites/quora/2017/07/05/research-shows-three-distinct-thought-styles-in-people-with-autism/#1d73aac1221e

Suppose you see a bird that you can’t name. Very often people will tell me they have seen a brown bird that was probably a type of sparrow. They hand me the bigger picture information, and this is usually followed by a time consuming and tricky process of me asking lots of questions about things they haven’t noticed. Whereas, a person who describes small details accurately, helps me identify the bird much quicker, even when there are key bits of information missing. A member of a Facebook wildlife group I set up, reported seeing a bird she didn’t recognise – and with only a handful of very specific details I could identify it instantly, show her a picture and have the id confirmed. She described it as thus: Cornish coast, size and shape of a tit, black head and wings, white collar and under wings and a reddish underside. It was in July. I pieced these bits of information together and knew what it was straight away.

Stonechat

I used the visual information and then checked off whether the following were likely: habitat – coast, and time of year – summer, location – South West England.

Checking the likelihood is always important – a Golden eagle in the skies above Wales is almost undoubtedly a buzzard.

A cuckoo seen in the winter is probably a sparrowhawk, like this one that took a blackbird down in my garden back in the winter of 2010. The cuckoo is a brood parasite that uses its resemblance to a sparrowhawk to frighten away the parent birds when it is hoping to lay its eggs in their nest in the spring.

When birds look very similar, like the curlew and whimbrel, you can use your knowledge and senses to help with id. If you listen, whimbrels make a rapid tittering of very short whistles, whereas a curlew’s call has a much more ringing tone and the male in displaying flight in spring has an almost liquid sounding song that crescendos into a bubbling trill. UK based whimbrels only breed in Northern Scotland and is only seen elsewhere in the country as a passage migrant in spring and autumn. It can take off and fly from a standing start, whereas a curlew will take a run at it. Although side by side, the beak length is a giveaway, it is unlikely you will ever have the luxury of seeing that, so understanding how they behave helps.

Curlew (from RSPB website)
Whimbrel (from RSPB website)

Of course, we must always be careful of how we interpret things and remember that all sorts of creatures can turn up in odd places – like the Tregaron golden eagle, or the bearded vulture currently roosting in the English Peak District. Vagrant, escapee, albino, and hybrid animals are frequently spotted. Whilst this can feel exciting for some bird watchers or nature spotters, the outcome is rarely positive for the animal – a raccoon dog (tanuki) was destroyed in Carmarthenshire only last week and I still feel distress at the hunt killing an albino stag in Somerset where I grew up.

https://www.facebook.com/Cambrian-Mountains-Eagle-Watch-1018718254978738/?ref=page_internal

On a lighter note, Bill Oddie tells a story about identifying a bird, that reminds me that even when using common sense and a bottom-up approach, you may still be surprised: Bill’s friend works for the RSPB and received a telephone call from a lady asking for help identifying a bird. He gleaned information about the bird’s buff colouring, and the bit of black and a bit of red on its head. This bird had been feeding at her bird table. The RSPB chap considered the information, matched it to the most likely suspects, and confidently told the lady it was a goldfinch. But she was not in agreement at all! He asked her to describe what the bird was doing, and she explained that it was stood by the bird table pecking at seed. He enquired whether it was able to reach up and get the seed, and the lady informed him that this large, heron shaped bird was actually stood next to the bird table and was leaning down pecking at the food. The bird was not a goldfinch – it was a crane!

Its not just the behaviour and appearance of the creatures and plants that we see that can help us identify them, the relationship between species is significant too. Take the stinkhorn mushroom and badgers for instance. I explore their relationship in another blog: https://offdowntherabbithole.org/2020/01/26/badgers-and-the-devils-fungus/

When I smell a stinkhorn, I look out for signs of a badger sett or other badger activity like a latrine as the two species are frequently found near each other. If I am on the Ceredigion coast looking out to sea for dolphins, I’ll scan the skies for feeding seabirds. These may indicate a shoal of fish and dolphins could be close behind them. I was listening to a dunnock outside the doctors’ surgery this week. This small, brown and grey bird had a most beautiful song that suddenly turned into a short staccato cheep-cheep-cheep. This type of noise is an alarm call used by lots of different small birds. I knew it wasn’t me that had alarmed it, we were both well aware of each other and keeping a safe distance.  So I looked to the sky, and lo and behold, a buzzard had started to circle and soar above the carpark.

The signs that animals use a local area may not be obvious, but if you keep noticing things with all your senses, then it is surprising what you may find. Here are some photos from my walks…

Lots of broken empty snail shells indicate this is somewhere a bird like a thrush or blackbird could come to smash open snails.
Lots of feathers on a log like this indicate a bird of prey comes here to pluck whatever it has caught to eat. This is in woodland so it is probably a sparrowhawk.
I knew where a fox lived so set my trail camera up. Capturing a still photo of it catching a bird in its mouth was a stroke of luck.

I recommend finding a local wildlife patch that you can visit and get to know at different times of the day; in different weathers; and across the seasons. If you use all your senses to notice your environment, I guarantee you will never ever get bored of what you find because no two visits will be the same. Take photos; learn what the plants are and have an educated guess at which butterflies and birds they may attract and see if you’re right! Learn all you can and enjoy going off down those internet rabbit holes researching whatever takes your fancy. As for equipment, buy the best you can afford. But remember, equipment is no substitute for noticing and learning. I deliberately leave my phone, binoculars and camera at home for at least one of my daily walks. I realised once when I felt disappointed because I didn’t have a camera to record something, that I was beginning to digress from what it is about the natural world that brings me such pleasure. Similarly, I do not need to name or classify every species I come across – I take an awesome pleasure in knowing that for that moment, it is just me noticing whatever it is, and that makes that moment special and never to be repeated.

Get out there and have some moments!

This is the first of my blogs to be featured in both my wildlife and my autism blogs. If you’d like to check out my other blog, please click below…

http://www.offdowntherabbithole.org

Categories
Uncategorized

Autism, emotions, and synaesthesia.

When I searched the internet for a quote that would capture how autistic people experience emotion, I found plenty of search suggestions along the lines of, “Do autistic people have emotions?”. I wanted to get away from the popular type of search results that frequently reinforce stereotypes of unemotional autistic people so went for something a bit more academic and science-y.

There was plenty of research on autistic deficits and  research questions were posed about whether empathy can be taught to autistic people. I also found other research into why autistic people don’t experience emotions.

I cannot honestly say that I felt ‘uncomfortable’ – my emotions don’t work like that. But my very logical mind began matching all these search results I was turning up, against the reality of my own lived experience of autism, and the realities of my peers, family, and clients. It just did not fit!

I “know” that autistic people experience emotions and in diverse ways just like everyone else.

So, I decided to see what the NAS had to say (The National Autistic Society – a well-known UK based organisation). They made a few mentions of autism and emotions in various sections of their website, typically in relation to challenging behaviour or emotional difficulties.

Overall, the perception online seems to be that autistic people may not experience emotions, or they may experience them in out of control ways.

Initially I disagreed with this.

However, after reflecting on this all day, I realise that “yes, we can look like that to people who aren’t able to empathise with us”. I personally believe that non-autistic people struggle with empathising with autistic people just as much as autistic people struggle with empathising with them.

This blog is my contribution to the discussion. It describes how this topic works for me. It may not be relevant to everyone else, or even anyone else, but if it creates an interest in what autistic people may be feeling under the surface and a willingness to explore this with them on their terms then great!

I went off on a wonderful tangent looking for a clear definition of what an emotion is. I discovered articles about the philosophy of emotions and the history of emotion too. I found there were evolutional and theological theories of emotions, and all manner of schools of psychology, neurobiology and sociology that added to the discussion. There is no simple definition – the subject is complex and broad and there seems to be no scientific consensus on a definition.

Most simply put, emotions are states associated with the nervous system brought on by all manner of different things, including our thoughts and behaviour.

Currently there are eight senses associated with humans. The five we probably learned at school: sight, smell, taste, touch, and hearing. The two associated with knowing where our bodies are – proprioception; and the effect of gravity on our bodies – vestibular. The eight sense is interoception – the sense of knowing how we feel. This includes feeling emotions and feeling bodily sensations like needing the toilet or hunger.

For me to describe how my emotions work, we need to consider my overall sensory processing.

My sense organs work fairly typically. My eyes are very short-sighted, but my vision is corrected with glasses. If an audiologist examined me, they would probably say that I have no issues with my hearing. My sense organs take in information in a fairly typical way. However, once that information reaches my brain, it is processed very differently to that of my typically developing peers.

Sometimes I need more information than most people need, in order to register a sensation – I like a full-strength hug not a gentle one for instance, or I can spin on a roundabout without feeling queasy.

Sometimes I need extraordinarily little sensory information to register the sensation – I can hear conversations in a room down the hall, and a door slam sounds as loud to me as a firework does to my neurotypical friend.

And this is where I would like to introduce you to the eight sense: interoception. It works just like all the other senses. It is not responsible for making emotions or affecting them in any way – just like the ears are not responsible for the noise they hear. Our interoceptive sense enables us to notice or recognise or be aware of how we feel.

If the way our brain processes sensory information is muted in so far as interoception is concerned, then we may not feel emotions, or the need to go to the toilet, or that we are hungry or in pain. If the brain processes the sensory information too intensely, then we may notice every sensation within our bodies, or feel emotions more strongly than other people do.

And just like all our other senses, our interoceptive sensory processing can work differently in different circumstances, or on different days.

Here are some ways that a person who experiences atypical interoceptive sensory processing may appear to an outsider, with my thoughts on what may be happening on the inside:

  • Doesn’t show emotions (maybe they are having emotions but not noticing them?)
  • Over-emotional (maybe that emotion genuinely does feel that strong to them?)
  • Loses their temper for no reason (perhaps they didn’t notice the sensation of becoming angry until it was too late to manage it?)
  • Moans about every tiny ache and pain (maybe their ‘tiny’ ache feels as painful as someone else’s broken leg?)
  • Doesn’t notice they have a severe tooth infection (perhaps the pain hasn’t registered with them?)
  • Won’t learn toilet training even though a reward system is used, and they fully understand what a toilet is for (maybe they can’t feel the sensation in their body that tells them they need to go?)
  • Has no empathy and doesn’t care about anyone else (maybe they don’t know how they feel themselves, so can’t imagine how others may feel?)
  • Blunt and insensitive – poor social skills (perhaps they have no personal concept of how unpleasant it feels to be spoken to abruptly?)
  • Easily led, vulnerable, promiscuous– forms relationships with anyone who asks (maybe if they don’t know if they ‘like’ people, they will politely become anyone’s friend?)

Perhaps autistic people ARE having emotions but just aren’t feeling them? No one would say that because I don’t feel hunger I shouldn’t eat. My care givers would be seen as neglectful if they didn’t feed me just because I never noticed I was hungry – food is a basic human need – everyone must have it.

So how about we look at emotions in that way too? Just because I don’t feel sad or show that I am sad, doesn’t mean I can be ignored when something sad happens. To deny me the compassion shown to my more typical peers following a tragedy, is as neglectful as denying me food just because I’m not hungry.

My personal interoceptive experiences tend towards the ‘needs a lot of input to register’ aspect of sensory processing. Growing up, this gave me the appearance of being aloof, disinterested in people, unemotional and cold. On a good day, I could appear strong, brave, and steadfast.

As an adult, I can still be interpreted in this way but I’ve learned to play to my strengths and there are times when the ability to remain calm in a crisis, keep a level head, and make objective decisions under pressure pose an advantage over my more typical peers.

When I was a girl, I knew I was different. I thought I must be a terrible person for being how I was. I remember despairing over my lack of ‘normal’ emotional responses and wondering what was so very wrong with me. Deep down inside I knew I did care and that I was kind and thoughtful (and my goodness, am I thoughtful – I cannot do anything without thinking it through in full first!) but somehow my experiences, my thoughts and my emotions seemed out of synch with each other.

I can remember experiencing traumatic events that would have made any normal person cry or feel distressed and I felt nothing. And not just because I shut off to those experiences. To my young self I wondered whether perhaps I was somehow to blame for these things? Surely I must want them to happen if I’m not even upset by them?

And like every other human, I am more than a product of my genes and neurology. My experiences naturally shaped me and added to the way I experience emotions. A complex cycle was created:  My autism affected the way I behaved in response to sensory information; and thus influenced how others treated me; which then influenced my further responses; and so on…

My interpersonal relationships were different to the relationships between my more typical peers. I struggled to develop the skills that would enable me to relate to others with ease. I didn’t feel things like other girls did and I didn’t act like other girls did. I tried my best to copy and pretend sometimes, but on the whole, I was content being self-contained and kept myself to myself, lost in my own world of music, books, and nature.

I was labelled as unemotional and eventually believed that meant I must be uncaring too. Perhaps I was kidding myself that I was alright really? Perhaps my knowledge that I was fundamentally ok – just different; was wrong?

I feel it is important to recall at this point in the blog, that other autistic people may have the ‘doesn’t need much sensory input to register’ type of interoceptive sensory processing. They may empathise with others so intensely it hurts them. You will see how different we all are, but by viewing our emotional responses as a result of our sensory processing it may make more sense of why that is.

At this point, my blog heads off into a little discussed phenomenon. It helps me explain my emotional responses but is my opinion and nothing more. As I learn more about myself, autism, and the complex science of emotions, my opinion will likely change. This is how it makes sense to me at the moment, based on the knowledge and experience accessible to me at this current time.

Synaesthesia is a perceptual phenomenon in which stimulation of one sense leads to an involuntary experience in a second sense. It is widely documented throughout history.

For me, the acidic green of newly opened beech leaves is the colour of the musical chord A minor. C major is sunshine yellow, G minor is matt aubergine. I only see chords in colours not individual musical notes.

My ability at mental arithmetic comes from my experience of single digit numbers as coloured shapes – I can visually click them together to do sums very quickly.

Synaesthesia explains how some of my other senses experience information that was not intended for them. Hearing in colour is a common example. It comes close to explaining my emotional responses.

I’ve described how I believe I actually do experience emotions, but I don’t always feel them or show them. Just like I may not feel hungry, but my body still needs food. As I’ve developed a greater understanding of myself, I recognise that in fact I have more awareness of my emotions than I realised.

As my self-awareness has developed, I have noticed what happens in my body in response to different stimuli. When I have tried to explain this to some clinicians, their response has not always been accepting, or even inquisitive. Very often my descriptions were interpreted as a symptom of mental illness – delusional in fact. I would prefer to see my emotional responses as a form of synaesthesia rather than my “brain not working properly”. Here are a few of the many examples of emotional synaesthesia that I have experienced across my lifetime. Remember – the emotion is there just like it is for every human, but my brain processes it differently due to my muted interoception – which means I may not feel the emotion in a typical way. This processing sometimes appears as synaesthesia. My sensory processing is frequently muted or over-responsive anyway, but these examples are outside of my ‘normal’.

  • Sadness – my vestibular processing is affected, and I can feel extremes of seasickness when changing direction or speed on a walk; or fail to become dizzy when spinning at high speed.
  • Shock – vision becomes pixelated.
  • Happiness – colours get brighter – especially green, that’s why I love nature.
  • Stress – vision becomes distorted and objects lose their definition.
  • Tiredness – hearing becomes painfully acute.
  • Very sad – food tastes gone off.

I have started viewing these signs of how my brain is processing sensory information as “my” emotions. They are consistent enough that if someone were to ask me how I felt, I could confidently give them the name of an emotion that would match their neurotypical expectation of my experience. This helps them understand and helps me get compassionate responses from people. But it bugs me, because it’s a lie! I don’t feel sad, or happy, or stressed, necessarily at that time.

As practitioners we often support people to identify and name their emotions in order to help them get their needs met more effectively – my account is worth considering whenever we do this. Wouldn’t it be lovely if when someone asked how I felt, I could honestly say ‘seasick’. And they would know me well enough to appreciate that my seasick was the same as their sad. That would really help meet my needs.

I mentioned a key phrase back then; “I don’t feel sad, or happy, or stressed, necessarily at that time.”

I have always been aware of this out of synch relationship between my emotions and thoughts. If I need to process what other people would define as an intensely emotional experience, I can analyse it to the point of understanding it at an almost atomic level, but it will still rotate around my brain for years and not lay down to rest. The emotions can’t be forced. I am no more able to tap into emotions now than I was as a young girl.

I don’t see this as a problem anymore. This is how I roll! I am better able to process experiences now that I accept my atypical way of feeling those emotions. When I experience an emotional event now that I understand and accept the way my emotional responses work, I can still analyse the event to gain clarity and process it cognitively. I can also acknowledge that my sensory responses are ‘normal for me’ and nothing to be scared of or view as a mental health relapse indicator. I don’t give myself a hard time because I’m not feeling what I should be feeling. Sometimes I get the feeling much later anyway.

A recent example is of a bereavement that I experienced in November 2019. My initial responses were logical, practical and helpful. My sensory responses were visual disturbance, taste disturbance and hypersensitive hearing. My initial feelings were frequently related to the frustration of my ordered world becoming disordered through the loss of a key figure in it. I may have appeared unemotional, brave, strong, distant, or inappropriate. In June 2020 I felt sad and I cried for the loss. It properly hit me what the loss meant.

The worse thing about feeling emotions in this way but in a delayed manner is other people’s responses. I can look like I am not coping, or attention seeking, or struggling.  Everyone else has moved on from these emotions, just as I am arriving. What I would have loved last month more than anything, is to have had the warmth, compassion, love and sympathy shown to me that was shown towards the people who were grieving like that in November. I appreciate that’s not how these things work, but this was a delayed response not a maladaptive one. Frequently I have not received the support I need from others because my timing is wrong or I have hidden my needs because of how it will look if I bring things up all this time later. Can we be kinder human beings I wonder, by giving people what they need, when they need it – even when it doesn’t fit in with our expectations of timing?

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autism diagnosis

Autism and diagnosis – a personal opinion

I could have explained exactly how I experience the world from the moment I could talk. In fact, I frequently did! The trouble was, my world, and my normal was not the normal of my typically developing peers. In the 1970s and 1980s, autism wasn’t really mentioned – and certainly not in relation to girls – particularly those who were academically bright and able to just about pass off as normal enough to get by. Well, normal enough for adults to not have too many concerns. My peers on the other hand could spot my autism a mile off! Neither they, nor I, knew there was a name for this – we all just knew there was something fundamentally different between the way I experienced the world and the way they did. No amount of masking my autism or trying to fit in was convincing enough to others to prevent them from noticing, and deep down inside, I always knew there was something different about me too. It took many years and many misdiagnoses to find out what that fundamental difference was called.

There are pros and cons of having a formal, or medical diagnosis of autism. For me, I already had some diagnoses. I disagreed with many of these, or felt they didn’t describe the full picture. I needed to get the right label, to slap firmly over the incorrect ones. For others, a diagnosis is not necessary or needed, or even wanted. I can’t say a diagnosis in itself, has opened up support or opportunities, or in any way practically advanced my life, but for others it certainly can. However, the freedom to accept myself following my diagnosis has changed my life. Deciding to seek a diagnosis is an entirely personal choice and I believe that anyone who looks at the diagnostic criteria or listens to an extensive range of first hand autistic experience and honestly thinks to themselves “that’s definitely me” is autistic. A formal diagnosis is a label or description of something that is already there. Good people who always accepted me remain good and accepting. People who didn’t listen or even try to understand, remain unchanged.

My diagnostic assessment was based upon the DSM-5 criteria. (The Diagnostic and Statistical Manual of Mental Disorders.) My thoughts on whether autism is a mental disorder (it isn’t) or whether an assessment based upon deficits is the best way of assessing whether someone is autistic (it isn’t) are irrelevant in some ways. This is the standard way of assessing Autistic Spectrum Disorder and getting this changed is a battle for another day. I will use this blog to look at the assessment criteria and describe what is going on for me when it comes to each of these manifestations of autism the clinicians look for when making a diagnosis.

The particular ways I demonstrate my so-called deficits aren’t that important. What is important is that people understand the diverse range of ways autistic people show or hide their autism. I will explain what is going on underneath the surface of some of my presenting behaviours. Each autistic person is different so I speak only for myself.

Criteria A

I have learned how to understand people and situations and have tried to study and find a script for every possible scenario that may happen on earth. This is clearly impossible and also extremely exhausting. I have learned to script conversations in my head and I am constantly second guessing what may happen. I understand body language – I can use my hands to add emphasis to a point I am making, I understand which words are appropriate to use in which contexts, and I have lots of stable and respectful relationships – but only within very strict frameworks like relationships with colleagues or family, where the boundaries are clear and expectations are laid out up front. Put me outside of my comfort zone where I have no script or framework with rules to refer to, and I struggle big time.

Of course, trying to take my scripts from one context to another doesn’t always go smoothly – no wonder I may use stereotyped speech or avoid social situations. As a child I would appear incongruously grown up for my age and talk like an adult. This was like handing my typical peers a double edged weapon to hit me with. Not only was I weird, but adults thought I was very grown up for my age too and my peers assumed I was showing off. Both things were worthy of teasing, bullying or disdain. Responses that further hindered my ability to interact with others and ate away at my self-esteem. I’ve got quite clever at using my scripts, I know how to add variety and ask open questions so that people talk about themselves. I can see patterns and go for a close match in conversation, rather than repeating the same conversation I’ve already had with someone. This has helped me build relationships and the more comfortable I am with people, the less self-conscious I feel. I don’t need to put as much energy into getting it right, and the conversation begins to flow naturally sometimes. Learning things in this way means I can give and take in relationships – it may feel clunky or robotic at times but is my best effort.

I’m certainly a caring person, so why the problems with emotional reciprocity? My interoception – or knowing how I feel inside, is frequently muted. The processing speed of my emotions is typically very slow. Have a read about my experience of empathy, it will explain this in more depth.

When I am having a conversation with someone, I am concentrating hard to understand what they are saying, to read their body language and work out the correct response. If this is someone I don’t know well or who uses lots of sarcasm or vague language, I have additional processing to do. I don’t get a gut feeling about things, I have to use logic to work things out. Very often I don’t really know what I like or dislike. This means that if someone tells me something about themselves e.g they experienced an accident, I know that I should say something sympathetic and not just ask lots of questions to seek clarification. But do I actually feel anything about their experience at that point? Well, no.

Later on, when I have had a chance to process what they told me, I can begin matching their experience to my own experiences to see what I think and feel about it. I might think then that their accident sounded awful and I may consider how I would feel in that situation. In my head I am looking for a pattern to match their experience to so I can understand it and say the correct thing in response. Too often, I get this wrong and what I believe is empathy, actually looks like I am making it about me and invalidating the person’s experience. Or it may look like I am not genuine, because my emotional response is delayed. I did ‘feel’ bad about the aforementioned accident, just so much later it would have looked weird if I had shown it.

This means it is often easier to avoid relationships because they are hard work. I don’t come across like typical people. I can offend people or appear to be self-centred or only interested in my own hobbies. I know this and try my best to not be like it, sometimes it’s easier to just avoid people rather than get it wrong. Not having a sense of liking or disliking things and people means I don’t necessarily get a lot of reward from relationships.

Small talk is tricky. It is full of statements that are not meant to be taken literally. “How are you?” is not meant to be answered honestly. To play along with the rules of small talk feels wasteful and dishonest to me. I appreciate it is part of what neurotypical people do to make their social interactions work – I view it a bit like when animals ‘play’ but are actually practicing asserting their dominance or place in the pack. I don’t really know why it is valuable in humans when they have the self awareness to just get on with being honest and not play games – it is not valuable to me. I would rather get straight to the point. It is like the foreplay of relationship building though, and by finding it difficult and avoiding it, it means I am less likely to get to the stage where relationships feel meaningful. The meaningful relationships I do have tend to be long lasting, loyal and strong. I have no difficulties with them at all.

Social interactions are also affected by my sensory processing. Eye contact in particular, involves masses of visual processing. My tactile aversion is triggered because if I am close enough for eye contact, I am probably close enough for touch. My sensory processing works very differently to my typically developing peers. If I am having a conversation, I will be consciously processing all the aspects of social contact I have just described, as well as the smell of the person; the sounds I need to focus on and the sounds I need to ignore; plus my proprioception and the need to stand or sit still, use my body appropriately to make the correct gestures, and adapt my tone of voice.

I may give the impression that I don’t socialise much because I don’t like people – not true. Or because I don’t understand how to interact – definitely not true, I probably understand it better than many people. I can’t see where the deficit actually lies. In fact, maybe it isn’t a deficit – I am genuinely having to process much, much more than neurotypical people have to process when interacting socially. No wonder it’s difficult!

Criteria B

I have touched on why I may be repetitive, and also on how my sensory processing is very different to that of my typically developing peers. When you begin to understand how my brain processes sensory information and how some of this is muted, and some of it is so intense it is painful, or so distorted it is not recognisable as being like that of my peers, you may get a feel for how challenging my world is to live in.

My need for predictability and routine becomes easier to understand. Rituals bring an added sense of control and familiarity, and repeating routines enables me to have some sense of being able to influence what is happening inside and outside of my body. My world is not predictable – my sensory processing fluctuates depending on how much I am having to process externally – e.g. in busy environments. Or internally – e.g. an illness I may not be feeling, or bodily functions I have to mentally search for in order to notice. Repetitive actions in themselves may feel very regulating or soothing to my senses, which is why I do them more when feeling under pressure.

Others may view my reactions to sensory input as hyper or hypo reactive. Believe me, my reaction is perfectly proportional to the reality I am experiencing! My unusual sensory interests are perfectly normal to me. I find it unusual that other people don’t hear music in colour or are so preoccupied they miss all the beautiful tiny details in nature that I see, hear and smell.

I am able to focus on subjects that interest me with an intensity that many others don’t possess. My lack of interest in what I perceive as an unnecessary focus on hierarchies and conformity in society, means I choose whatever it is I like to be interested in with an open mind, and frequently approach the subject in an innovative way. My interests provide me with consistency, predictability, and an escape from the stresses and strains of life. They enable me to be good at something in a world where I am frequently seen as deficient. They are a safe ‘go to’ when I need to place my mental energies somewhere.

Criteria C

Pretty self-explanatory – and a good test for anyone considering whether they are autistic or not. My autism was present before any of the other factors that shadowed me getting the correct diagnosis.

Criteria D

My functioning is impaired when I am in environments or communicating with people that are not accommodating of my autism. I thrive when I am in environments where my needs are met. My autism is exactly the same, I haven’t suddenly developed social ease or typical sensory processing. Of course, a medical diagnosis will be based on the medical model and not a social model of disability or illness. I always process the world in an autistic way. How big a problem this is depends on more than just me. It is up to you too.

Conclusion

Receiving a diagnosis has been positive for me. I understand my life experiences, challenges and strengths much more realistically. I feel able to be myself and I have more confidence. I hope that autistic people are listened to more readily, so that future diagnostic criteria for autism focuses on authentic autistic experience, and not just on how this looks to non-autistic people.

The examples I have given are my own personal ones. If any autistic people wish to add their own examples to the comments section, I would love to read them. Every person is different. The diagnostic criteria is based upon the manifestations of a person’s autism when it is observed in a non-sympathetic environment, or by professionals working within a system which views their own particular experience of the world as normal. I find the focus on deficits hurtful. I have spent a lifetime feeling deficient – and now its official! I don’t view myself as defective, and neither do other people who know me. Whilst the medical focus is on what autistic people can’t do, progress towards acceptance and understanding of autism will be hindered. And certainly there is no way of truly valuing us. I do not believe it is as simple as turning the deficits approach to diagnosis into a strengths based approach. I do struggle with things. We do live in a world where the majority of people are not autistic so that will inevitably mean I am different. Every autistic person will have different strengths, in the same way as they have different challenges. We are all unique. In the future, I would like to see clinicians developing an understanding of “why” and not just “what”. This will ensure that people who slip under the diagnostic radar due to their ability to mask their autism or who don’t fit the stereotypes will be able to be taken seriously when contemplating a diagnostic assessment.

I was diagnosed by clinicians who understood “why”. Their approach towards me was compassionate and interested. I was not made to feel deficient. I am not convinced that all clinicians understand the “whys” behind an autistic person’s presenting behaviours. Please share this article with whoever you feel needs to read it.

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5 minute read autism diagnosis identity

Aren’t we all a little bit on the spectrum?

I’ve heard this said quite a lot – particularly since my diagnosis. Firstly I’d like to say “Thank You” to the people who have said it. I mean that sincerely. This has been said to me when people have been empathising, or trying to relate to my situation – it has even been said to soften the perceived blow of having a ‘disabled’ child. I am heartened that people want to put themselves in my shoes and I hope they bear with me and read this blog; reflect on other ways they can show their solidarity, and continue in their commitment to understanding autism.

Receiving a diagnosis of autism is a complex process. The diagnostic criteria is based upon clinicians identifying certain traits, experiences and behaviours, and all sorts of biases may come into play. This may be why certain groups of people are under-diagnosed or misdiagnosed.

In my opinion, the assessment criteria for diagnosing autism is based on stereotypes and deficits and could benefit from being updated. People who don’t fit those stereotypes, or are skilled in adapting to their atypical experiences of the world can easily be overlooked. However, there are some skilled clinicians out there that understand “why” autistic people do what they do and they are able to delve deeper and unpick all the various complexities of the person’s experience and identify whether autism is in fact the correct diagnosis.

Whilst every autistic person is unique and completely different to the next autistic person, we all have one thing in common. We have always been autistic. Autism is lifelong. No one becomes autistic as an adult, and there will be evidence of autism right from the very start.

Apologies to anyone who is tactile averse. I wanted an image that demonstrated a ‘human being behind the spectrum’ – that paint looks a bit yucky though if you don’t like that sort of thing!

So are we all a little bit autistic?

No – we’re not. But we do share some experiences and behaviours. There is plenty of stuff about autism that is relatable to people who aren’t autistic. That’s why I enjoy using analogies to share my experiences.

If I described my atypical sensory processing, sensory overwhelm, and my need for adjustments in a scientific or medical way, it’s likely that you might see me as very different from you. That’s ok – I probably am. But if you can relate to a scenario such as this one then you may begin to ‘feel’ what it’s like for me as well as understanding why I’m different.

Picture this: You’re driving around in your car looking for a parking space and it’s raining, the radio is blaring out, the heater is on and you’re way too hot in the car. You’re thinking about that appointment you need to attend and what you’re going to say, and you’re not sure if you’re wearing the right clothes, and you can’t see an empty parking space. The windscreen wipers are swishing back and forth on maximum speed, and even though you are leaning forward and screwing your eyes up, you just can’t see where you can park. It’s all beginning to feel a bit much. So you turn the volume down on your car stereo and turn the wiper speed down – suddenly it becomes easier to find that parking space. You’ve done nothing to improve your vision, or the parking space detecting ability of your eyes, but the drop in volume means the overall processing your brain has to do of all that various sensory information is reduced and it becomes easier to focus. That’s similar to the level of overwhelm I often feel and why I need to have peaceful, calming environments to live in.

If you find that scenario relatable it doesn’t necessarily mean you’re autistic – but it demonstrates that all our senses work together and reducing input in one sense when we’re becoming overwhelmed may prove beneficial. It also demonstrates that when we are under pressure, sensory information may feel more acute or distressing. It gives a feel of what my ‘normal’ feels like and when people understand that, it is more likely they’ll be compassionate and accommodating rather than seeing me as ‘different’ or ‘other’. If they bump into me in town and see me starting to “look like a meerkat” as my husband and son (affectionately?!!) refer to it when I have to go into a big shop with all the lights, temperature change, music, smells and escalators, maybe they’ll not think “look at that lady acting weird, standing tall and alert like a meerkat on guard duty” but “I wonder if she is finding this overwhelming like I do sometimes and what can I do to help?”

So yes, we have things in common. But as I’ve elaborated on in an earlier blog – just because my husband has backache and is tired at the moment, it doesn’t mean he is pregnant. Or even a little bit pregnant. It just means he can relate – and that’s a good thing.

I find this diagram helpful for explaining the autism or autistic spectrum. The spectrum is not linear like the top image, it is more like the coloured wheel image below. I perceive non-autistic people as being a bit obsessed with hierarchies and linear things. I’m sure that individually people aren’t, but our society seems to enjoy ranking stuff – whether that’s a school’s league table or a football league or on a talent show – it happens all over the place. I’m a great lover of categorising things myself, but my default setting is not usually based upon the typically perceived norms of what makes one thing better than something else. It all feels a bit judgmental and you miss so much beauty in the world when you rank stuff and only focus on the “best”.

The trouble with having a spectrum with ‘mild’ at one end and ‘severe’ at the other is it’s total rubbish. Simple. You can no more be mildly autistic than you can be mildly gay. You can’t be severely human. Or a little bit on the French spectrum. It just doesn’t work like that. The characteristics and experiences autistic people share come under various categories and each person is affected differently by them. A person who has no verbal language skills with highly developed motor function will experience the world and be treated very differently to a person who is highly articulate with poor coordination. Each has their own challenges and strengths. Both are autistic and it feels difficult to say which of them is more severely affected by their autism. One can climb a mountain – one can make a phone call. How do you rank that? You begin to realise that the severity is nothing to with the person at all – but is to do with the situation or environment they are in. The social model of disability becomes far more relevant than the medical model we are more used to. The person hasn’t changed but suddenly when other people’s attitudes or their environment becomes more accommodating, they become less disabled.

Personally, I’m not too bothered when people try and relate to me by saying they are a bit autistic too. I have other battles to fight and if I tell them not to say it, I’ll reinforce that I’m pedantic. I want to build bridges between people, but I’d rather they didn’t say it though. I find it a bit annoying because it is inaccurate – and believe me, when your ‘normal’ world feels as chaotic as mine does, you need at least a few things to be ‘right’, ‘clear’, ‘accurate’ and ‘consistent’.

Many autistic people, myself included, have had a lifetime of knowing we are different to our typically developing peers. Some of us have believed – and been told – that we are ill, damaged, or wrong for being how we are. For some autistic people their diagnosis has validated their identity. For me, it has given me the freedom to be myself and the confidence to reject the incorrect labels others have given me or I’ve believed about myself. Some autistic people are loudly proud of being autistic. Hearing others saying they are a bit autistic too may feel invalidating or belittling of the very real achievements autistic people make every day in just getting by in a neurotypically biased world.

Many of my blogs end with a reflection on what we have in common. This is important to me because most of all, I am human. I have every right to exist – regardless of my neurology. My diagnosis has not just validated my identity as an autistic person but as a woman and a human being too. There is something very wrong when people wonder whether they are in fact a true human being – just because they are autistic.

I want to relate to other people and understand how their world works for each of them – I have spent my lifetime doing this and sometimes I try to copy, or pretend to understand so that I fit in better (this can be called ‘masking’ in autism, and I’ve blogged about it). I’d like people to have the same enthusiasm and commitment towards understanding the autistic world as I have towards understanding the neurotypical world. We need to recognise our shared humanity. Seeing people as “other” – whether that is in generalisations like ‘autistic people are like this’ or ‘all neurotypicals are like that’ is a dangerous road to go down. The rise of right wing politics across our planet scares me and we should take heed of what we know about how things like prejudice, stereotypes and discrimination work. Dividing people into “us” and “them” rarely leads to inclusion, equality and peace. In our own lives we can explore how to work together and see the shared experiences and use them to relate to each other better, whilst accepting we are all different and we all need different things. And that’s why human beings are so awesome!

Taken at Folly Farm in 2009 – I don’t have photos of me when I enter a big shop, but you can use your imagination and work out for yourself how I may look!
Categories
5 minute read social communication

Autism and the road to communication

Learning to drive…

Remember your first driving lesson.

“OK, put your hand on the gear stick, press the clutch down with your foot, engage first gear, slowly lift the clutch and release the handbrake and press the accelerator with your other foot all at the same time” – you’re off.

Easy, isn’t it?!

I find that the analogy of learning to drive is useful for describing how social communication frequently feels for me. Most of us who have been driving for years can do it automatically and even hold conversations with passengers and listen to music whilst taking in the road conditions and anticipating any risks or changing road conditions up ahead.

I’m one of those people. I can get in my car or on my motorcycle, intuitively find the controls and I’m off!

In fact, driving – and riding motorbikes and bicycles – are things I find extremely enjoyable. They are in the very small group of physical activities I can do without needing to consciously think about what to do with my body.

Social communication on the other hand is something that has never become automatic, and I assume that after 47 years of trying, it possibly never will. In a conversation I often feel like that learner driver I once was – awkward, painfully self-aware, and a bit clunky on the controls. I might get the order right, and use the controls appropriately, and get from A to B, but my knuckles are white from gripping the mental steering wheel inside my head so hard!

From a communication perspective I can ‘drive’ well enough to pass my test. Like many learners, I possibly have fewer bad habits than some experienced drivers. I probably know the rules of conversation better than many people – I try to be conscientious, thoughtful and considerate. But just like understanding the highway code off by heart – it’s not necessarily the way people “actually” drive. All those rules you’re meant to break – all those things that we know aren’t “real driving”… These things pass me by, and in communication situations, I often feel like a very competent learner who has passed their driving test with no major faults – but is actually not representative of most road users!

Being a mechanic doesn’t help much with driving either. My understanding of people is good, as is my knowledge of vehicles. I know more than the average person about how engines work, the sounds they make when something isn’t quite right, and the way other people drive. I can competently fix someone else’s puncture or service my own bike adequately – much as I have a good understanding of people and can help other people with their communication skills. This doesn’t help me be a better driver though; either in a vehicle or out there socialising.

When I am on familiar social roads I can begin to take in the scenery and enjoy the journey, but if you were to send me across the channel to where they drive on the other side of the road I’d be floundering. Put me in a social situation I’m unsure of and I struggle. I can do what I do, well. A bit like when I moved from Bristol to West Wales – my pulling away from junctions and roundabouts was far faster than needed and fortunately didn’t result in me rear-ending any of the local, laid back drivers that are used to having plenty of time for manoeuvres.

 I can navigate the roads of social communication, but the effort is huge because I’m usually having to consciously work out what to do unless the road is one I have travelled down many times before.  I prefer to keep my social journeys close to home and not venture out at busy times or in bad weather. We all find it helpful when other road users use their indicators properly – who hasn’t felt frustrated by someone indicating left that then turns right?! Why can’t people communicate accurately too and say what they mean and mean what they say?

I’ve been able to talk for over 4 decades and don’t fancy highlighting my social struggles with the equivalent of L Plates. I’d rather other people were courteous and gave me space and time to work out how to navigate through social situations safely and at my own pace, on my own route and under my own control. I wish that interacting with people was as straightforward as driving and I wonder why I have never got from that learner driver feeling of everything being conscious and clunky, to where I can just jump in and enjoy the ride?

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!

Categories
Coronavirus

Reflecting on coping with the anxiety of coronavirus – 3 months on…

So we didn’t run out of toilet paper after all then!

I wrote my very first blog about autism 14 weeks ago in response to the approaching restrictions that would be needed because of Covid-19. It was quickly picked up by a variety of autism organisations and groups, and I watched what was a speedily written and personal reflection on the situation, quickly become a recommended read: https://undercoverautism.wordpress.com/coping-with-the-anxiety-of-coronavirus/

I recognised how my autism could be an advantage for coping with the reduced socialising, the working from home, and for coping with high levels of daily anxiety and uncertainty – all things I am skilled in managing everyday. I also recognised that the changes to my lifestyle as a result of coronavirus might feel scary, the new rules may be difficult to interpret and understand, and that everything I had learned off by heart in order to cope with the “normal” world may have to be relearned in order to cope with the pandemic situation.

It’s now midsummer and I have continued writing blogs and have achieved on average one a week throughout this time period – I have had a productive lockdown in terms of written output and I am humbled, shocked and delighted at how widely read my writing is. Not just my autism and wildlife blogs, but my local newspaper column, some recent memories I’ve shared for a wildlife trust project, and my employed work too. This past week I have seen an article published in the British Institute of Learning Disabilities Good Autism Practice Journal and I’ve helped produce a support pack for families affected by autism in my local area in West Wales. This is beginning to sound like a job application or a CV – it’s not meant to be! It demonstrates how useful it is to have a hobby and an outlet for expressing myself. I’ll come back to this later in my blog.

Like everyone else, we are beginning to consider what a “new normal” may look like and I need to prepare for that too.

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Back in March I thought about how important it would be for me and my family to develop a routine that suited us, and replaced our previous routines. I’ve described why this is important for us and how we did it in some of my other blogs, but I’ll describe it here as briefly as possible: My world feels quite chaotic because my brain processes information (including sensory information) in an unfiltered and non-discriminatory way. This means that I need to impose my own sense of order, predictability, and my own routines and ways of categorising, understanding and coping with this information. If I don’t, I become completely overloaded and overwhelmed and unable to function.

At the start of lockdown I saw lots of posts on Facebook about how people were going to learn new skills, do up their homes and gardens, teach their children, and take up hobbies. I loved that it was ok to have hobbies again! When I was growing up it was far more normal to have hobbies and it was even ok to have slightly unusual, obscure or nerdy interests. There is a great deal of satisfaction that can be gained from having a hobby that distracts you, brings you respite from day to day life and enables you to immerse yourself in it to the exclusion of everything else. You don’t even need to be good at it to enjoy it! Many autistic people find their interests can be all-consuming and whilst this may bring them immense personal pleasure, it can appear single-minded, obsessive or even boring to other people. Tough, I say. It’s just how we do things.

However…. I am aware that as well having the valuable skill of being able to hyper focus on things that interest me, I can pursue something single-mindedly in pursuit of truth or deeper understanding, to the exclusion of other people’s needs or my own wellbeing. For me, this is particularly likely to happen at times of stress. The chaotic world I normally live in has suddenly become even more chaotic as a result of Covid19, and I can feel my need for logic, order, understanding and, “for something to just be the fucking same as it was last week!!!” has increased massively. I expected this and set myself 3 rules at the start of lockdown. Here they are:

  • I will brush my hair every day even if I don’t want to and even if I’m not going anywhere. (I dislike brushing my hair because of the way it feels. I often rub the back of my head on things without noticing and have had a lifelong tendency to develop a big knotted mass of hair on the back of my head. This makes ‘horrible hairbrushing’ even horrible-er!)
  • I will have walks every day. (This is essential for regulating me and for maintaining a routine)
  • I will keep my interests broad not deep during the Covid19 pandemic. I will not pursue anything related to politics, health or inequality as an interest at the moment. (The last thing I need to do at times of stress is go off on one trying to change the world when I quite clearly can’t)

That’s it. Not particularly difficult rules to follow and I have been quite successful. The only rule I broke was the one about walking. Unfortunately I was very unwell and unable to get out of bed for a week. I may or may not have had coronavirus but I needed to visit the hospital and was discharged with a letter stating I had possible Covid19. This was in March and tests were only being offered to inpatients. I was treated in the Covid treatment centre which was a big tent in the local hospital grounds. It was the worse sensory experience I have had in a very long time. It was bright, white, incredibly noisy with fans and bleeping machines, and no one acted or looked like a doctor or nurse normally does. I also felt quite unwell and thought I might die a couple of times. So in true “me” style I wrote a blog:

https://undercoverautism.wordpress.com/2020/03/28/why-there-has-never-been-a-better-time-for-me-to-be-autistic-and-for-you-to-learn-what-its-like/

I needed people to understand how the world is for me just in case I died. I also wrote an additional nature column for my local newspaper about seeing the natural beauty in the world and why we should be kind to each other. I felt I needed to leave no unfinished business, just in case. Then I tried writing about Red Kites – I’ve been following a breeding pair in a blog diary. I couldn’t finish that blog and ended up in hospital. That’s how I knew I was really ill. I never like to leave things unfinished.

Fortunately I recovered and was able to discuss some of this with a lovely learning disability health liaison nurse who worked with her colleagues to develop easy read documents and a film about the hospital experience at the moment. I also wrote some tips for autism wellbeing that we shared so that people would know that it could be useful to take things like sunglasses, noise-cancelling headphones and other objects that they find useful for regulating their senses if they had to go to hospital too.

I am not fully recovered and have days where my chest is still tight, my breathing is difficult and my cough returns. I also experience tiredness like you could not believe. For me to stay indoors and not have a few walks every day is almost unheard of. I used my time in bed that week to learn a new skill – making an app. And to overcome a lifelong challenge. This is quite astounding, but needs must, and I was about to withdraw my PhD application just because of my phobia of being on camera. I’ve blogged about this too . With the help of a friend I was able to get myself from not ever imagining I could be on a video call, to making several training films where not only do I show part of my body and speak, but it is recorded and shared too! I now recognise the image in photos and mirrors as “me”. Something has clicked inside of me and I have a sense of recognising myself and a connectedness between my body and my mind. This has been a big achievement and essential in some ways – how could I have got through lockdown as a working person, without being able to take part in a conference call?!

Working from home suits me and my role is in the background of all the dedicated key workers out there supporting the most vulnerable people in our society in their homes and care settings. My job has enabled me to neatly compartmentalise my time spent thinking about Covid19 into my working hours. I have been involved in risk assessing the workplace and keeping abreast of the pandemic situation and communicating about it. This has helped me control the urge to become an expert on coronavirus – I watched many people at the start of the pandemic get caught up in learning all they could about the virus. I’m the same – I process and accept things by analysing and understanding them. I can quickly assimilate masses of information and use that to work out what should happen and how it all works. The problem with this very logic based approach is it doesn’t integrate smoothly with the illogical world we live in. I frequently find myself desperately seeking clarity in situations where there is none to be found. I NEED things to have a plausible explanation and be accurate and “right”, and it frustrates and frightens me when they are not. Like I said before, my “normal” world may feel more chaotic than some other peoples because of my sensory processing and this new situation we are in has massively increased my stress and need for order.

white and black weekly planner on gray surface

I have observed people’s responses to the pandemic and felt astounded at what appears to me to be illogical responses. I have a lifetime of feeling like the character of the little boy in the Hans Christian Anderson story ‘The Emperor’s New Clothes”. Why am I the only person calling out the nonsense before my eyes?!!! I felt confused when people started saying the risks of Covid19 were reduced – even though the figures said otherwise. Lots of people headed for the beach and seemed to behave as if wishful thinking and a sunny day would make them immune to the virus. I have felt frustrated by politics – but not too frustrated. Politics is still predictably dishonest, and full of hidden agendas, power play and unpleasantness – there is always a sense of reassurance in predictability – even unpleasant predictability! I have felt saddened when people have got caught up in arguing with each other about important causes – unable to consider each other’s viewpoints, truly listen to each other and act humanely. But each time, I have had to take a step back and pause and consider to myself: “What is really going on here for me?”, “Am I looking for clarity where there is none?”, “Is this something I can change or is this something for later on?”, “Am I focusing everything on this subject and forgetting that we are living in unprecedented times?”.

My passion for things being “just right” drives me, and the strongest emotion I ever feel in life is the one that I get when people are deliberately dishonest, or misinterpret, or misrepresent me. It rocks my world, unnerves me and makes feel very, very unsafe. In my world, sounds sound different at different times; colours change colour; faces distort; smells fluctuate; my own body comes in and out of focus to the point where I sometimes can’t feel it. People talk in riddles as far as I am concerned. They don’t say what they mean, they are sarcastic and they expect me to ‘just know’ how it all works. My world has never been consistent and I’ve got used to that. When someone deliberately mucks with it I feel very unstable and unsafe. I need to put things right. If a friend has a problem I feel driven to solve it – I have learned that simply listening can be fine too. When I see someone on social media sharing racist propaganda without realising, I feel driven to correct them – but I don’t because no one joins Facebook to become educated. It is an internal battle to keep my mouth shut or my fingers off my keyboard sometimes.

My need for honesty pushes me towards correcting people, but I know this is perceived negatively. I won’t mask my autism by hiding my beliefs and values or acting in a way that is untrue to myself, but I have learned that sometimes it is better to preserve my wellbeing, choose my battles and recognise that other people are different to me. Not only in what they rightly or wrongly believe, but in what matters to them and what their values are too. Some people are not flexible, they are unwilling to see the truth and my need for order and truth does not matter to them one bit. I am always amazed that other people don’t value truth, openness and straight talking in the way that I do. But we are fundamentally different – and that means that they are unlikely to be playing the game of life by the same rules as me! This has been a tough lesson to learn. Much is said about ‘theory of mind’ and empathy and so on with regards to autistic people . There is nothing wrong with autistic people’s empathy in my opinion. I know lots of autistic people and we “get” each other. I totally see why they do things – because it’s why I do things too. I don’t find my autistic friends openness about what they think of me rude, over-familiar or anything other than refreshingly honest and I wish more people were like that. I am well aware that you may think something different to what I think and that comes from our different baackgrounds, neurologies, genetics and so on. I have learned as much as I can about people so that they feel more predictable to me.

The reason that I don’t “get” why a lot of non-autistic people do things and why this isn’t intuitive to me is because I am running on a completely different operating system to them. I function pretty well but I work differently. Think of your mobile phone – lets say it runs on android. Mine is an apple. They both make calls, they both tell the time, they have similar apps. Our phones can do the same things, and apple and android systems have various quirks, and advantages over each other but are still phones at the end of the day. But try running an andriod app on your iPhone. It will not function – ever. They are not the same – an android app will never work on an apple phone. And that is the world I live in. I am not somehow a lesser version of normal, or defective or broken. I don’t even aspire to be “normal”. I don’t need to be fixed, or helped to become more sociable, or more able to suppress the bits of me that are different. I don’t actually want all that. What I want is for non-autistic people to put the same amount of effort into understanding me that I have put into understanding them.

My writing has given me an outlet for sharing my insights and will hopefully enable people who want to understand how autism is for me, and how it may be for some other autistic people, to learn and reflect. I feel vindicated in some ways because I feel like I have a lifetime of not being listened to or heard and I finally have a voice. It is a hobby that can be used with my other hobbies and my passion for the natural world is shared in my wildlife blog http://www.offdowntherabbithole.org

Watching the seasons change reminds me that change is part of nature. It is commonly said that autistic people don’t like change. For me that is not true – and to be pedantic for a moment, I’d say I love change but find unpredictability, lack of clarity, and disorder very unsettling.

We planted cress a few times during lockdown and loved seeing how it visibly grew day by day. We have seen the blue tits build a nest in a hole in the apple tree, visit the nest with food and then fledglings leave and make their way into the wider world. The apple tree itself has grown leaves, blossomed and now has tiny green fruit that are starting to develop a red blush, since I wrote my first blog. We ate carrots for dinner earlier that were barely seedlings when the pandemic was announced. The woodland where I walk nearly every day, was bathed in spring sunlight at the start of the restrictions. On my permitted one hour daily walk I saw the wood anemones bloom, followed by the bluebells and orchids. The first beech leaves unfurled with their vivid, acidic green colour and now they, and the oak and ash canopy have shaded the woodland floor which is green again in the absence of flowers.

The natural world is a place where my senses are most regulated – nothing is really jarring, nauseating or frightening in the way it is in the man-made world. I have enjoyed avoiding towns, people and crowds and felt quite sick earlier when I caught a waft of diesel fumes from the increased number of vehicles using our road. The thought of going out more and being exposed to more sensory input is anxiety producing for me. I will need to take it slowly and let my brain and senses readjust to the increased processing that will be involved. I am finding seeing people wearing face coverings very distressing and I am only able to wear certain masks myself. I have used my insights to prepare some information to help people. This has been well received and I know this distress is shared across many of the autistic community and lots of other people too. I don’t use public transport and I am confident in saying that I am exempt from wearing a face covering – but I don’t like seeing other people in them and I don’t want to justify or explain myself either.

The sight of face coverings, puts me in a state of high anxiety before I’ve even factored in the additional sensory processing. On top of this comes all the new rules. I am already struggling. Some people are sticking to the 2m safe distance whereas others aren’t. Shops and other buildings have lots of signs up and I find lots of signs really disorientating and I can’t read them quickly enough to work out what to do and that annoys people. The rules are different in every building and the unwritten rules are different too. In some places it seems less important to follow the arrows or stand in a queue or so on. It totally screws my mind and I can’t see it getting any easier and no one can help me because we’re all experiencing this together and learning as we go along. The stay at home phase was great – I’d like to stay at home forever. This next phase worries me, the rules are changing fast and they don’t seem logical. I need more clarity but recognise there may not be any. I feel compelled to seek clarity elsewhere, where I may have some hope of getting it – and following my diary rigidly, or organising my digital photos in categories, or repeatedly doing things that soothe me, all help but won’t make the pandemic make more sense.

I can feel myself appearing to be “more autistic”. Of course this is nonsense. I can no more become more autistic than I can become more heterosexual, or more female. I am not regressing, I am responding in a perfectly natural way to a perfectly extraordinary experience. I am also needing a bit of space – I love my family but spending so much time together can feel restrictive at times. We have rearranged our son’s bedroom to give him more space and we’ve made a point of making weekends special again. We had started off by clearly differentiating between weekdays and weekends but over time, every day got a bit samey. Yesterday we walked in the woods and our son swam in the river and we ate cake and drank from our flasks of coffee. It was a joy to be able to go in the car to a nearby favourite spot and walk and feel like we used to before the pandemic started.

I have grown as a person through this situation. I’ve recognised the value of my autism and the value of sharing my insights. Like most people, there are times I have thrived and times I have struggled. I began by sharing how productive I have been. There have been other times where simply getting dressed, making a drink and remembering how to talk have been monumental tasks to achieve. I don’t like it at the moment but it will pass. I don’t want my old normal back and I’m unsure of the new normal. I have learned lots about myself, and about others. I’ve learned how to make an app from scratch and watched myself on film. My love of the natural world has kept me going and my writing has kept me focused. My son, my husband and I have annoyed each other, loved each other, laughed together, and stuck together through this. I have unfinished business that needs to be completed and it seems fitting on this day (Father’s day in the UK) that this blog is dedicated to my dad, and I look forward to when he is able to rest in peace after restrictions are lifted and I can take his ashes back to the forest where they truly belong.

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Categories
Uncategorized

Masking

What do people mean by autistic masking?

I had never heard of this phenomenon until last year. I was having a discussion with a professional who works on the local NHS Autism team, and she asked if I wanted to have a look at a questionnaire about camouflaging and masking. I thought why not, and promptly set about answering the 25 questions. I emailed my response back and was delighted to hear I had scored really highly on all areas! “Well, I’m clearly not as autistic as I thought I was, I knew I’d get a high score because this is all obvious stuff that everyone does all the time. See I’m as normal as the next person”. I thought to myself.

But… 

My high score wasn’t because I’m not that autistic, in fact it indicated that I mask almost all of the time and this is a very common experience in autism.  I was beginning to feel uneasy. I had realised I was autistic by then but wrongly assumed the ‘autism spectrum’ people talk about was a linear thing with mild autism at one end and severe autism at the other. I would probably be a little bit autistic – because I work, I have a family, I function well enough to convince most people I’m normal. And I’ll forget about all that other stuff; the never fitting in, the always knowing I was different, the misdiagnoses and failure to reach my potential – that’s probably all because I’m just such a crap person!  Of course, it is not like this at all – you can no more be mildly autistic that you can be a bit gay, or slightly pregnant. The spectrum is a collection of different elements, aspects and strengths and every one of us who is autistic, has their own unique combination of these. And everyone that isn’t autistic is not on the autism spectrum.

 The questionnaire was scored in the areas of compensation, masking, and pretend social ease. Until this point, I had assumed everybody pretended to be normal all the time. I realised that some people were more ‘normal’ than others, but I had no idea that there was even such a thing as masking. I still cannot comprehend how neurotypical people operate in terms of social interactions, so watch out those of you who know me, I plan to find out and will probably question the hell out of you!

Types of masking.

There are lots of different ways autistic people cover up their autism and its worth having a read of other people’s experiences . I’ll touch on three elements of camouflaging and my choice of terminology has no great thought behind it and is not a definitive explanation – to be honest, much of the language used in research and accounts of masking feels a little judgmental to me – it suggests ‘normality’ and deficits :

Compensation – this includes all the tricks and tips I’ve taught myself (and others) over the years. The techniques for making realistic eye contact by looking at the person’s mouth instead of their eyes. I had the added bonus of having regular investigations and treatment for hearing problems as a child, so my lip reading was positively encouraged. A few years ago, I considered writing a book for autistic people about how to get by in life. I had worked as a manager of a residential service, with a woman who had been in the care system since childhood and had a whole host of psychiatric and behavioural diagnoses. I supported her through assessment for Asperger’s (as it was known back then) and when it came to my work appraisal she wrote some feedback that said “Emma is really good at teaching me the tricks of the trade”. I was delighted at this – not least for the compliment, but for her accurate use of complex language. In fact, I was the one who said to my line manager “What do you think she means by that Karen?”

Masking – this includes hiding my distress, confusion, and difficulties whilst pretending all is well. I have spent my life feeling as if I have been winging it, and I am often only moments away from making myself look totally stupid by asking a question that everyone else intuitively knows the answer to. The further in my career I have gone, the more I have had to mask. Every time I hear a new piece of business jargon I have to look it up so that I can keep up with the conversation. I have to suppress my need for clarity and my desire to blurt out “Why are you talking such utter nonsense?!” But pretending I know what is going on isn’t always helpful. I’ll give you one of my embarrassing moments:

I was sat in the board room in a very serious meeting and the person talking used the phrase “the elephant in the room”. Now, I absolutely knew this was not to be taken literally. An alarm went off in my brain that said “idiom/metaphor/figure of speech alert”. So I used my quick thinking brain to whiz through everything I knew about elephants to try and work out the meaning. Elephants are big – are they talking about something that is big? Elephants have big ears and a trunk – no it can’t be to do with that and stop it Emma, do not go off on a mental tangent about the different types of elephant and their respective physiology. Elephants never forget – aha, maybe it’s to do with memory or remembering something. What else do I know about elephants?….And then the question came: “Do you have any thoughts on that Emma?” And I realised that I hadn’t got a clue what was going on, or what the question was, and I couldn’t even grasp at an answer out of thin air. The conversation had moved on and I was lost in the world of Proboscidea. I was probably the only person in the room with the taxonomic knowledge to name the order that elephants, mammoths and mastodons sit in – and I was probably the only person in the room feeling stupid, anxious and lost! And all because I didn’t want to make myself look stupid for not understanding something. I challenge you to spend a day in your workplace or school considering how complex language is if your default setting is to take things literally.

I also mask my need to move about or do anything that ‘looks’ autistic. I find moving is very regulating, it helps me concentrate, focus and come up with ideas – all the sorts of things employers and teachers encourage. But it would put me in the firing line of ridicule, misunderstanding and people would assume that there was clearly something wrong with this otherwise bright and articulate woman who can’t keep still and behave ‘properly’.

Assimilation – I never felt like one of the girls at school but I knew my life would be easier if I pretended to be like them. I learned about boyfriends by listening to what other girls had to say and joining in the conversations as best I could. I was not attracted to boys at all as a teenager and I wasn’t attracted to girls either. I learned the language of relationships but had no idea of the meaning of some of the terms (‘getting off with’; ‘blow job’ etc). You’ve read how my brain works when I described the elephant in the room – go figure! Many of the girls at school read magazines and studied and giggled at the problem pages and articles on how to know if a boy fancies you and how to flirt and so on, so I joined in and copied. This was useful because it gave me some proper concrete information on how to have relationships with boys and made me appear to have something in common with my peers. I wasn’t interested in having a boyfriend but knew it was a normal part of growing up. I worked on how to flirt and how to tell if a boy was interested in me but unfortunately put so much energy into ‘getting it right’, I never considered consent or whether I wanted to go out with them. I can’t remember having feelings towards other people as a child, sexual or otherwise. I didn’t like or dislike people. I didn’t look at someone and find them attractive. My sister covered her side of our bedroom with posters of pop stars and my friends talked about boys they fancied and got excited when certain actors were in films. None of this did anything for me at all. I bought a small photo in a frame of George Michael in Speedos, because Wham! were very popular back then and I knew it would be easier if I said I liked someone. The photo sat on my bookshelves whilst I lived at home and was my attempt at fitting in and somehow feels a rather ironic choice now – gay and dead!  RIP George x.

Photo by Egor Kamelev on Pexels.com

Don’t we all mask?

I assumed everyone masks. I know for a fact that my old line-manager swears her head off outside of work but was always totally professional within her role as a director. I know that it would be rude and feel hurtful if I replied honestly when someone asked if I thought they looked good in the item of clothing that I thought looked dreadful on them. I know that you cannot go through life being impulsive and doing and saying whatever you want at the expense of others. So isn’t masking something we all do?

I’d argue that it is not. Those things are the normal day to day, not being an asshole type things we do because we are sharing this planet with each other and need to get on. Kindness is essential, even if it is frequently overlooked and undervalued in our society. Kindness comes first for me. If I choose the kind option then it may mean I modify my behaviour or instinctive response. I may need to hold back and rephrase my honest response into something diplomatic and kind – but I can still be true to myself and be honest. Assertiveness is a good way of being true to yourself because you still meet your own needs but also meet other people’s needs too. I will compromise my behaviour but not my values.

So what is different about autistic masking?

Quite simply. The cost.

Masking your autism always comes at a price. And I have paid with my mental wellbeing. The costs are twofold. The direct mental health costs of camouflaging are exhausting. Whilst I’m concentrating on getting my eye contact right, I’m using valuable capacity that could be used for answering the question or thinking. And the continual anxiety of whether I’m getting it right wears me down emotionally and cognitively. The indirect costs are things like low self-esteem from getting into all sorts of scrapes while pretending to be normal, and not feeling sure of who I am and whether I am an ok person or not, as I feel I’m living a lie.

It erodes my identity because I’m not sure which bits of me are truly me. If you ever share doubts about your identity with mental health professionals, it can indicate various psychiatric conditions and personality disorders. Misdiagnosis of autistic people is common and once a label has been given; every trait, behaviour and experience may be interpreted as part of that labelled disorder  – this further erodes the sense of identity and creates a sense of being damaged or ill. It also creates a sense that you can somehow get better and recover. Autism is not an illness and recovery is not going to happen. Living a fulfilled and valued life can happen though, but in my opinion is unlikely to whilst you perceive yourself as broken and needing to be fixed.

The knock-on effects of mental health treatment can further affect your wellbeing. Stigma, discrimination, and side effects of medication are just three of the many ways this can happen.

Another effect of masking is that you don’t regulate your emotions or senses when you need to. All those times I stop myself from moving about to regulate myself, I stay dysregulated. All that energy that goes into keeping still or not reacting to whatever it is that is causing me to become overwhelmed further increases my distress. And no one knows. That is a serious issue because if no one knows how distressed I am until I absolutely have to show it by either falling apart or completely switching off (some people would describe how they experience meltdowns or shutdowns) then I will look like I overreact. I struggle to identify and verbalise what I am feeling anyway and if I am hiding what my body is telling me I need to do to feel better, no one can ever help me. Also, the idea that so-called ‘high functioning’ autistic people don’t do all those autistic things is reinforced – which is unhelpful and inaccurate. The same is true of not asking for clarification, or time to process information – my needs go unnoticed and therefore unmet.

Regular masking means you may never learn decent coping strategies because no one knows you are not ok. Then when something happens in life that is difficult, traumatic, or distressing, you have no idea how to cope.

Should I take off my mask?

Or even could I? Or do I want to? Yes, I would like to be more “me”, but that doesn’t mean going about my day impulsively and insensitively doing what I please or saying whatever comes into my head. I have a choice in much of what I do. I do not have a choice in how my senses work or how my brain processes information. I will react strongly to a loud noise because my body and brain think I am in danger and no amount of me telling myself otherwise will change that. I will take things literally, or not be able to read between the lines sometimes. I do have a tendency to be honest and upfront, and my brain will opt for the honest answer every time, regardless. I cannot choose how I react to all of these things and sometimes other people need to be more understanding and patient. Where I can choose how to react, then I do my best. Or if I’m having a bad day, I’m a pain in the backside – just like everyone else can be!

I have been very fortunate in having a career where I have had some excellent mentors, role models and line-managers. I trained to become a registered manager by taking part in a scheme where I had placements in a range of different care services under a number of different managers. I used my excellent skills at masking to observe, analyse, copy, and practice the management styles in each placement and gradually hone them into my own style that worked for me. This is where my ability to mask has been a huge benefit. I wasn’t doing it to disguise something, but rather to try out what worked for me so that I could become a good leader myself.

So I don’t necessarily need to stop masking. On occasion it can benefit my mental wellbeing because it enables me to learn skills that are good for my personal development. It enables me to ‘test out’ how to behave in certain scenarios. It helps me learn rules for behaving in particular situations.

However, it is essential that I have balance, and any period of masking needs to be balanced with times of not masking. For me, camouflaging for lots of the time is not sustainable. I am blessed with having people and places that require the minimal amount of covering up.

What am I masking?

I am similar to many autistic people because I compartmentalise things. The world is so chaotic and unfiltered, the only way I can cope is to divide it all up into bits that have their own rules and explanations. That way I can function day to day because I have less to work out. If I am at work, I know how to behave in an appropriate way. If I am in the village shop, there’s another set of rules to follow as far as conversations, behaviour and social interactions are concerned. I can even cope with people being in a number of a categories – living in a rural village, it is quite normal to see people in a number of their roles – my conversation at the GP surgery is very different to my behaviour when I see my GP at a concert we are both playing in. This works well for me until people pop up in the wrong places or the rules change! It enables me to mask better too. I can have a mental phrase book of small talk for the shop, small talk for work, chats while dog walking and so on. I am more comfortable with defined roles and tend to have more meaningful relationships within boundaries. I know how to pretend to be whatever the particular type of ‘normal’ is in any situation. It helps me predict and I feel more confident.

The trouble is, this reinforces that very disjointed sense of who I am. It adds to the questions I have about my identity and what is authentically me. I have needed to join up my compartments a bit more so that I feel more whole. I am not just autistic Emma or wife Emma or mum. This also makes me question again – what is it I’m masking? Where is the autistic bit? Of course, there is no autistic bit in the same way as there is no female bit of me or British bit. These parts of my identity run through every part of my being.

How do I take off my mask?

When I was first diagnosed with autism I went through a process of revisiting every experience in my life and viewing it through the lens of my autism. I looked for anything that was out of place (how very autistic of me!) and I could not find one single example that would show I was not autistic. Things that had puzzled and frustrated me about myself for years became crystal clear. I felt liberated. I felt that I wanted to be proudly autistic and why should I hide? I felt like I wasn’t autistic enough because I was so good at hiding it, and maybe I should try and act a bit more autistic? But I didn’t really want to. I wondered if I was properly autistic because I don’t do lots of stereotypical autistic things. Was that because I was ashamed? How the hell do I be this authentically autistic version of me?

I thought all around this subject and could not get my head around it at first. But like so much of my processing, it took time and involved taking the long way round and detouring off all over the place. I concluded that my need for compartmentalising everything was holding me back. The autistic bit of me is all of me. When I masking, I’m still being me. When I am being a pedantic, annoying know-it-all that won’t stop telling you what it is I need to you to absolutely know, right this minute, that’s me too! The totally scatty, unable to organise her own lunch woman – that’s me. The hyper-focused, innovative thinker that solves problems others can see no way round – that’s also me. The cowering from the sudden noise Emma is the same Emma that stands up confidently in front of people and shares her knowledge. The woman pretending she’s ok because she doesn’t want to let on she hasn’t got a clue, that’s Emma. And so is the woman who stands up for others and tells the truth regardless of the effect, because it is the right thing to do – it’s all me.

When should I take off my mask?

I am not letting myself down or failing to be authentic by masking. How dare others judge me for coping the best I can. Particularly when the risks of not masking are so dire – ridicule, discrimination and misunderstanding. And how dare I force myself to act in a way that doesn’t sit right either – be that through masking or not masking.  

My wellbeing is important. If my masking affects my mental health in a negative way then it is clearly destructive and I need to reduce it. But that’s not just down to me. I may decide “Fuck it, I’m going to flap my arms about next time I need to in a meeting as I’ll feel much more able to concentrate”. That will not go down well – regardless of the rights and wrongs of it.

Do I have the right to? Absolutely. If I had a different disability then it would be accommodated. No one says deaf people can’t move their arms to communicate through signing, because it looks funny and might upset the other people in the room. Do I need to be the warrior out there being authentically autistic so that stigma is challenged? That’s up to me, but no, I don’t have to be.

What would help though is better understanding. Being sensitive to the needs of autistic people and creating more accommodating environments that don’t create sensory overload. Using language that is clear and not open to interpretation. Giving people time to process questions instead of asking again in a different way and thus doubling the amount of processing. If autistic people were properly, compassionately and genuinely listened to, all this would be clear – I am not saying anything out of the ordinary. If people acted in this way then I wouldn’t need to ask so many questions or regulate myself as much. If people got to know me and understood my values and recognised that although  I may seem serious, I have a good sense of humour and although I may seem unemotional, I am passionate about many things. Then, when I do say the wrong thing or act in the wrong way, they’ll know it’s just Emma being Emma and she doesn’t mean anything harmful by it.

How will this look?

Living authentically, is about living. It’s the journey not the destination. The world is not ideal so it is likely I will always have occasions where camouflaging my needs is preferable to meeting my needs publicly. If I choose to mask, that’s fine and totally authentic. If I can’t help myself from masking or don’t even know that I’m doing it because I’m so used to it, then that is clearly authentic too. Masking is never a sign of failure. Aspiring to not mask is not essential – the world gives autistic people a hard enough time without us giving ourselves one too. I have more acceptance of myself because I have more understanding – and that means I feel more in control and more able to choose how I live. Will I apologise for needing to meet my own needs and regulate myself? No. Will I ask more questions when I need to? Almost definitely. Will I do things that make me feel self-conscious? Probably not. Will I compromise my values or lie? Never.

But how will this work for everyone else – if I have considered my part then what about you? If you are someone who has good social skills and understanding then do you really have to insist that someone who is uncomfortable with eye contact looks at you? If you are good at all that stuff then why is it not you that is changing your behaviour? If you understand something and someone asks a ‘stupid question’ then why not be patient and explain rather than show your frustration. If you are puzzled by another person’s sensory experiences then why not enquire in a gentle way so that you can adapt and adjust so that they feel as comfortable as you do?

I don’t purposely do things to make other people feel uncomfortable, but I can’t tolerate bullshit either. The world feels very different at the moment and I’m pleased to see people acting in a less bullshitty way. It is good to see that we all wear casual clothes at home when we are on our work conference calls. It is good to see that many of us have pets and children that are important to us and what we really like is having a walk or sitting in the garden. When the ability to shop, spend and consume indiscriminately disappeared, many people re-evaluated what was important to them. Why not make understanding and accepting each other more, part of that?

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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.