Categories
sensory trauma

The Sensory Pain of Shopping

My attempt at upgrading my mobile phone online failed…yet again.

There was nothing left but to mentally and physically prepare myself and head off to town. Shops are a sensory nightmare for me. The lights, the rows of stuff that flash by at eye level like a strobe light as I walk down the aisles. The noise and smell and the echoey acoustics. Everything about large stores is distressing and overwhelms me, so I avoid them or go in with a small list and a pair of noise cancelling headphones.

A difference this time was the need for face coverings. I am tactile defensive. Light touch feels excruciatingly uncomfortable. The area around our mouths is particularly sensitive and I’m well aware of what I need to do to be able to wear a mask or face covering:

  • Soft material
  • A smell that is familiar and calming
  • Nothing touching my lips if possible
  • Relax and breathe through my nose and remember to keep nose breathing rather than panting with anxiety – the hot breath sensation feels suffocating
  • In fact a tight snood type face covering feels better than the light touch of a mask
visit Autism Wellbeing’s Facebook page for more tips

I’ve got used to how people look wearing masks now but still find it disturbing at times. So, I prepared myself for the experience and in I went and headed for the mobile phone department. I knew what I wanted and just needed to get things sorted out and leave. My husband, in the meantime would grab the groceries.

I was regulated as I entered the store and things were ok. I began my conversation with the staff member but found I had no idea if and when he was talking to me. I was avoiding eye contact and my usual ploy of looking at a person’s mouth was ineffective as it was covered up. As a child, doctors thought I had a hearing impairment and assumed I lip read. I suppose I do to an extent but not because I can’t hear – I hear too much so can’t work out what I should be focusing on. Seeing a person’s mouth move indicates to me where the noise is coming from.

I apologised and asked the man to repeat himself yet again – and then explained that I was having difficulty understanding him. He was great and said he’d take his mask off. I went to take mine off too but he sharply told me not to! At this point I realised I was becoming overwhelmed. I start misunderstanding simple things when I feel overloaded and can appear “not with it” to anyone observing me. The man began talking louder and slower and I thanked him for taking his mask off and explained that I wasn’t deaf, just struggling to understand.

So there I was, attempting a simple task that I had rehearsed in my head from start to finish. Yet I was beginning to panic. My breath felt hot and I wanted to pull my mask away from my mouth. The lights felt brighter and the man’s voice had got louder and slower and I needed to retune my ear to understand his sudden change of tone and volume. Give me a monotone voice any day! Excitable people whose pitch goes up and down and who wave their hands about enthusiastically are so difficult to understand – it’s like they keep swapping languages mid conversation!

We got to the end of the transaction and I set off to find my husband.

Photo by Oleg Magni on Pexels.com

Now, I know my husband well. He has fortunately kept the same look for most of the 27 years I’ve been with him. But could I find him today? No! I couldn’t remember what he was wearing and everybody had a mask on. He looked totally different. Not, “oh there he is, my familiar husband – but wearing a mask” – but like he had completely and  utterly shape shifted into an unfamiliar person. So I sent him a text. I was still functioning enough to be able to think of what to do. But I was getting hotter. My body takes a while to process temperature changes. It is another reason why I dislike shopping. I can go in and out of shops in regular time, but my brain processes the temperature fluctuation between indoors and outdoors slightly slower than regular time. I have this horrible, uncomfortable time lag with the temperature change catching up with me yet not matching what my eyes and brain are telling me is going on in my surroundings.

Not only was my face feeling horrible. My breath was hot and irritating me and of course I was panicking and breathing harder which made it even worse. My whole body started feeling uncomfortable and I had to fight the urge to rip my mask off and then rip off all of my clothes and scratch myself until I could erase the dreadful sensation off of my skin.

Relief. I found my husband. I was probably a bit jittery and edgy and I asked him what was on the list and could I go and get it. This is our usual ploy on the rare occasions we go shopping together. Give me something specific to do. But one item at a time; while he does the bulk of the shopping.

It nearly worked. My husband asked me to choose something for pudding and pointed me in the direction of the chilled cabinet. The reason it nearly worked is… whilst he gave me a specific task…he also gave my overloaded brain a choice. I needed to choose a pudding from a cabinet full of puddings.

“What shall I choose?” I asked him

“You know what we all like” he said

(and in my head I thought about how I had just asked him a proper question and he had not answered it. Why oh why couldn’t he be like me and take things literally and answer my question so I knew what to do. If I ask any more I will look like I am hassling him – I’m an intelligent woman, surely I can decide on what we have for dessert)

So I stood and looked…

And looked…

And I felt the tears welling up because all I could see in front of me were coloured boxes that were physically moving around and not keeping still long enough for me to choose one.

And my brain was thinking “Emma, just look at you. You can’t even make a simple choice” and my breath was getting hotter; my clothes were feeling itchier; the noise was echoing and swirling around my head. I screwed up my eyes to reduce the glare and I opted for something I could rely on…

I engaged my good, solid, logical side.

Let’s think about puddings. If I can think of one then maybe I can imagine it in my head, like a picture. And if I have a picture in my head then I can hopefully match it to one of these boxes that are dancing about, tormenting me on the shelf.

Easy!

So, what pudding shall I choose?

I cannot grab at something in my imagination. I have to logically and consciously work it out; so I began my mental checklist…

  1. Don’t just opt for what you had last time we had a pudding. (I am super proud of that one – it took me decades not to just eat the same thing every mealtime. There is a safe familiarity about knowing what you are going to eat anyway, but if I was ever put on the spot and asked to choose something to eat, opting for the thing I ate last was a quick way of responding. And unless the person had been there at that mealtime, I could get away with it and appear decisive and confident!)
  2. What do we all like?
  3. Not chocolate…one of us can’t eat it
  4. Not rice pudding…the texture – eugh!
  5. Nothing with gelatine … we are all veggie
  6. ……

“Bing Bong”

“This is a customer service announcement…”

At that point I physically jumped. I could see my husband approaching but the noise of the announcement sent my heart thumping and my ears ringing and I completely lost my train of thought. And my hot breath and the sensation of the mask intensified. I wanted to rip off everything that was touching my skin…and then rip my skin off too!

But I know that supermarkets are difficult for me. I could feel the usual sensory overload increasing and I knew the inevitable consequence of trying to battle through this, would be to completely overwhelm myself to the point that I either shutdown completely in order to protect myself from further overwhelm – or become so overwhelmed I was unable to control my responses.

So I said to my husband that I needed to go outside and could he finish without me. I then looked straight ahead and plotted my route out of the store. I had a kind of tunnel vision going on and I fixed my gaze on a distant point and like a guided missile I aimed for it. Had I been able to physically see the people I undoubtedly brushed past quite rudely on my way out, I would have apologised. But in that moment, I knew I had to get out and regulate myself. I had enough processing power to plot a route and follow it – but none left for adapting to anything that got in my way once I had executed my escape plan!

As I stepped outside I ripped off my mask and walked away from the store. The experience was nothing new. It is my normal. It is intense, painful and distressing. But expected. I was proud that I had recognised it and not battled on – you cannot win a sensory war by willpower. I also knew how to regulate myself.

 I found myself an upright post to lean against and press with my whole body. I noticed where my body touched the post and where my feet touched the ground and I pressed and pressed and tensed all my muscles and then relaxed them until I was confident that I was in my body again.

I looked up at the sky and relaxed until a seagull flew into view and I let myself notice it and watch it, enjoying the unpredictability and respite from having to control something.

I breathed the cool air through my nose and noticed how it felt and I breathed in and out slowly.

I got my phone out and played on an app that I find soothing and I spoke to myself in my mind with gentleness. Not berating myself for not coping. Nor did I let myself focus on any negative thoughts about the store, or the staff and customers.

Actually, I had coped well. These things happen. I needed to enter the store and I had planned it in advance. I got myself out before I was overwhelmed and I regulated myself. I had not needed to wear a face covering for such a length of time before and I shan’t do it again. I’ll avoid shopping or take breaks.

I carried on with my day. I also recognised the vulnerability to further overload that happens when I have to endure sensory pain. I took things easy and didn’t put myself in situations that had the potential for further sensory overwhelm.

Over the next few days I reset myself by allowing  my body, brain and senses to seek out and repeat the sensations that would soothe me.

But my fragility has lasted. I had to endure further stresses. Not noise and lights this time but emotional. Again, I planned my response. I followed my plan. I used self-care strategies proactively and treated myself with compassion.

Photo by Pixabay on Pexels.com

This time my already fragile body responded by feeling severe pain in my ears – most of my senses are now functioning at a ‘normal for me’ level, but not my auditory processing. My hearing is so sensitive everything hurts. It is a week since the experience in the store and I am functioning well enough, to everyone looking in at me. I am fairly happy. I have coped with my ups and downs just as well as anyone would. I am productive and focused, and I haven’t treated myself or anyone else with anything less than respect and dignity.

But the physical pain is almost unbearable. I have cried a few times in desperation as I cannot escape it. Most of my senses are fairly well regulated but my sense of hearing will not settle. Every noise pierces my ears and hurts me. The noise of cutlery on crockery is so bad I cannot eat with my family. It feels like everyone is shouting at me. The most tormenting noise comes from within me though. Despite my expensive noise cancelling headphones and almost round the clock self-care and self-regulation strategies, I cannot find peace.

I can drown the noise out with very loud, rhythmic music but I cannot escape the noise of my heart beating and my blood rushing through my body when the external noise subsides.

This internal noise has accompanied my life. It is not always there but I can find it when I want it and in fact, it gave me some comfort as a child, as well as frightening me at times. On occasions it is so loud it physically hurts. Now is one of those times.

I remember as a little girl, we sometimes needed to get the doctor out as I would sit crying and rocking and banging my head against something to make the noise and pain stop. I can remember him coming in the night to sedate me. I would gladly welcome him now!

Each noise, whether internal or external is like a sharp stab of pain in my head. I understand why as a child I would bang my head and rock. In fact, I woke this morning with a fine matt of hair on the back of my head from the rocking I often do in my sleep when I am dysregulated.

Gradually it is easing, and I remind myself that this is how my life is and always has been. I will probably always experience times like this. When I keep my senses regulated I can cope with fluctuations in sensory information much better. When I am in a state of distress, everything can become the last straw.

There hasn’t been a last straw this time. I have been able to apply the healthy strategies I have learned to keep myself functioning.

 The consequences of Sensory Trauma can be catastrophic. Terms like “meltdown” have become almost common place and do not capture the pain, severity and impact of sensory overload. It is not just a short-lived reaction born of poor tolerance and low resilience. Even when a meltdown is avoided, my body pays a price. My body has been physiologically activated and is hypervigilant and on alert. Without the escape of shutdown or catharsis of meltdown I wait in a sensory nightmare, hoping it will soon stop.

Experiences of sensory overload may be misdiagnosed as psychosis, or personality disorder. Perhaps they are viewed as attention seeking or over-reactions. Understanding my sensory processing system has helped me accept my experiences and not be scared of them. However, they are real experiences and have not disappeared just because I know what they are.

The world is an overwhelming place. Even with my practiced strategies and proactive approach to managing my life, there are inevitable times where Sensory Trauma occurs for me. My experiences may sound dramatic, but they are totally normal in my experience of the world.  All day everyday I need to proactively regulate myself and keep the build up of potential Sensory Trauma at bay. It takes a huge amount of energy,  but thankfully less energy than spending my life in a constant state of dysregulation.

Sensory Trauma image by Autism Wellbeing

I am tired now because I am in pain. I have had needed to keep myself living slowly and calmly so I don’t flee away from the pain or absorb myself in distracting but destructive pursuits to take my mind off it. I have incorporated endless self-care into my days and hold on to the knowledge that this will pass at some point. It always does.

Be kind…

If you know someone who cannot articulate their sensory experiences in speech, please consider how they may be experiencing the world.

Challenging behaviour, masking, meltdowns, shutdowns – look beyond the behaviour and stereotypes.

To learn more about Sensory Trauma visit

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

Categories
5 minute read Autism sensory trauma

Sensory Trauma

I’m sat at my desk at work. Outside the lorries have been reversing non-stop since 8am. Each “beep beep beep” sends an arrow of pain and shock straight into my chest whilst simultaneously burning my eyes and ears. I can hear my colleagues laughing and joking in the corridor outside, completely oblivious to my pain and to the lorries. I don’t want to go and see them because the tsunami of perfume and aftershave mixed with the sudden change in brightness when I leave  my dark room for the fluorescently lit corridor will hit me so hard it will almost wind me. And their voices will get even louder, and the laughter will hurt my ears and make me jump and sound like someone chucking a bag full of spanners into a washing machine on spin cycle.

But it’s ok. I stay where I am, hyperalert and shivering at the thought of someone opening the door to my office to see me. If they do, I will need to quickly whack my mask of normality on, and pretend all is well – and nod my head and make eye contact and fight the urge to hide under my desk and sob. If I am  lucky I will still be able to speak but will probably say something a bit awkward or slightly out of place as my overloaded brain tries to coordinate thoughts into spoken language.

I’ve tried to tell people how my world is. Some doctors thought I was mentally ill. Some colleagues thought I was unsociable. Teachers thought I was lazy, distracted or not trying. Some friends thought I was weird. Some partners assumed I was overreacting. I always knew I was different but couldn’t quite say why – if I wasn’t an alien; and it wasn’t pathological; it couldn’t have been spiritual, then what was it?

The trouble is this is my reality every single day. All day. It is not an overreaction. It is not an exaggeration. It fluctuates so can be difficult for myself or others to anticipate.

The answer:

This is how my sensory processing works. Nothing more, nothing less. Simple. My sensory processing system works differently to the majority of peoples.

Why is my sensory processing different?

Again, the answer is relatively straightforward. I am autistic. I was born with a sensory processing system that works differently to other peoples.

My earliest hospital notes refer to how I would not feed or would feed very slowly and if someone persevered with my bottle of milk, I would typically fall asleep whilst being fed.

Roll on 47 years and I am still the last to finish my meal. A few weeks ago, I was discussing this with a friend who is far more knowledgeable about sensory processing than me. We were both eating an apple and I discovered that I have a completely different awareness of sensations in my mouth than she does. I can feel food on my lips and the tip of my tongue, and then again as I swallow, but in the centre of my mouth I have almost no sensation. This means that when I eat I feel very stressed because I never know when food is going to reach the back of my mouth. I frequently gag and I am highly anxious about eating because swallowing often comes as a surprise and catches me out. My awareness of how my body feels is muted.

This is quite different to how my hearing works. My brain tends to process sounds as very loud and harsh. Some people may refer to this as hypersensitivity. Whereas my brain processes sensations in my body as quite muted. Hyposensitive interoception you might say. These terms are all well and good for clinicians who are not autistic – they tend to feel comfortable using their sensory experiences as the “norm” and measure my experiences as “too much” or “too little”. My normal is different though and always has been.

This experience with my friend and the apple helped me understand more about how my sensory system works. Interestingly I was yawning non-stop by the end of our focused fruit eating session, and I did have a lie down and sleep afterwards. This is very typical of how a human being’s nervous system works when we are in danger. Fight, flight, or freeze. My parasympathetic nervous system responded to my stress and I couldn’t help but crash out for an hour or two. Just like I did as that tiny baby who felt distress at having something in her mouth from the moment she was born.

My reactions to certain sensory information are totally proportional to what my brain is processing. It is logical to run away from danger, or fight if your life is being threatened. Completely normal to freeze if you are terrified, or collapse and disconnect if everything is too overwhelming.

The difference between myself and someone who experiences eating an apple as mundane; or laughing colleagues as insignificant; or reversing lorries as mildly irritating at the most – is the way our sensory processing systems work. My brain processes those sounds and sensations differently to the other person I have just described. My brain gears my body up for action or inaction because it perceives a threat that the other person does not.

My reactions are normal for me. Their reactions are normal for them.

I have always been like this because I am autistic, and for me this is how my sensory processing system works. It is not a choice; it is part of my neurology. Other autistic people have their own sensory processing experiences because we are not just made up of our neurology, we have our physiology; our life histories with all their joys and traumas; our individual personalities; and our own psychologies, capabilities and characters.

Each of us perceives the world differently. To me, a vacuum cleaner may be a terrifying source of noise that looms towards me, spewing its musty, dusty smell and roaring like a belligerent dragon. To you it may be an innocuous piece of cleaning equipment whose only fault is it takes up too much room in the cupboard under the stairs! I understand perfectly well what it is for. I’m certainly not scared of it and I absolutely don’t feel any emotions towards vacuum cleaners in any form – positive or negative – they are vacuum cleaners for goodness sake!  

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

For me, this piece of equipment causes me great distress because of the effect it has upon my senses. For you it is fine. We both see the same item, understand its intended function in the same way, but our relationship with it is very different. It causes me pain in my ears and makes my body react as if I am being attacked… It cleans your carpet.

There is no right and wrong in this situation. We perceive things differently. A bit of mutual understanding can go a long way. So can a bit of common courtesy. I wouldn’t do something that hurt you, so please don’t do something that hurts me. I cannot desensitise myself to this, its how my body works.

Of course, many of us grow up assuming our perception of the world is shared. I didn’t know that most people don’t have to have their food arranged in a certain way because vinegar or sauce touching bread would require the  whole meal to be thrown away due to the unbearable texture created when bread gets damp. You may find that outrageously picky and assume I am spoilt or attention seeking. You may assume that everyone finds the smell of perfume enjoyable (they don’t!) or that everyone likes to look at spreadsheets on a computer (believe me I can’t!) or that brushing your hair is easy (some days, it really, really isn’t!).

My reactions to sensory information may well appear unusual to you. But for me they are logical and proportional.

Spending my day to day life in anticipation of what distressing sensory experiences may happen next takes a toll on my health and wellbeing. It is not healthy to spend my life in an activated state, hyperalert because I am scanning for latent danger. The ordinary activities that happen frequently throughout the day are an unavoidable potential source of trauma for me. And maybe people won’t understand when I demonstrate how distressing they are – perhaps they will think I am overreacting or have challenging behaviour. Maybe they will pathologise my reactions and mislabel them or not even believe me at all.

My experience of the world and the way I react to it has impacted on how I am perceived by others; how they have responded towards me and how that has affected our ongoing relationships. It made me more vulnerable to other types of adverse life events and left me growing up without a sense of agency. I was left invalidated and unheard.

I’m not the only one…

Autistic people have been describing their sensory differences for a long, long time. Blogs, interviews, and personal testimonies are filled with evidence of sensory differences and the effects these have on autistic people. Autism and trauma are discussed together frequently. They can manifest in similar ways and be difficult to tell apart. Being autistic increases vulnerability to trauma – of course it does! Being in a minority in a neurotypically biased world where your differences are perceived as deficits is not a good starting point for anyone.

But there is more to it than that…

The way I perceive the world through my senses is in itself traumatic. Repeatedly experiencing unavoidable pain every day that makes my body react as if it is in mortal danger is traumatic. Not being believed is traumatic. On top of all the trauma I have experienced due to the impact of my autism and the adverse life events that I have been through, I have experienced trauma since birth. Perhaps even before birth. This is sensory trauma.

Sensory Trauma has been hidden in plain sight for a long time. It is time to start some conversations about this lived experience of autistic people. It is time to be listened to. At Autism Wellbeing we have prepared a position paper about Sensory Trauma and made a short video about it.

I would like to hear other peoples experiences of sensory trauma. We are publishing our book soon and are interested in feedback on our position paper.

Our position paper has been published by ourselves at Autism Wellbeing because we want it to be read as widely as possible. It has only just been made available – please leave a review on amazon if you decide to buy it. You can purchase the position paper here:

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

Categories
Autism identity

Unmasking, personal growth and reaching my potential as an autistic person.

All humans have needs, starting with the absolute essentials we need to stay alive such as food, water and the air we breathe; along with all sorts of other needs depending on our individual personalities, physiology, social and emotional requirements.

Whereas the essentials are things all humans require, we may each need different things in order to be able to thrive and reach our potential. Do we ever reach our potential as humans? Who knows? But what I do know is that on the journey towards self-actualization we must consider our uniqueness as individuals.

And for me that includes my autism.

What makes this different for me as an autistic person?

Like many autistic people growing up, I was painfully aware that I was fundamentally different to my peers. I did my best to fit in with them in order to minimise the teasing; the exasperation I created in others; and the bullying. This involved a common strategy used by many people, including autistic people called ‘camouflaging’ or ‘masking’.

Speckled wood butterfly camouflaged on woodland floor

As a girl and young woman, autistic masking involved me acting in a way that meant I appeared more similar to my peers than I was – this included pretending I was interested in things that girls should be interested in like bands, boys and make-up. It involved me not asking too many questions that would expose my naivety and my particular thinking style – going along with conversations that involved euphemisms and slang in the hope that all would become apparent. It rarely did!

And hiding any mannerisms, movements or ideas that exposed my autistic differences.

Interacting like this meant I frequently missed out on getting my questions answered – or even asked, most of the time! It meant that I never quite understood how friendships and relationships truly worked, I just sort of understood what it was people did within them – and I tried to copy as best I could. I avoided many social situations because they did not appeal to me, and I was not particularly popular because I did not appeal to my peers either.

All in all, I missed out on lots of knowledge and information that my peers were able to gain through intuition and knowing how to ask the “right” questions, rather than the random, unfiltered questions that went off on a tangent like mine frequently did. My social development wasn’t behind that of my peers because I lacked capacity for understanding, it was behind because I lacked opportunities for gaining understanding.  I was too busy masking.

For example, I was bright enough to know that asking my classmates what the technical difference was between the two intimate-relationship based expressions: ‘getting off with’ and ‘having it off with’ would end in them ridiculing me. So, I did not seek clarity. I tried to logically make sense of the language to find the answer out for myself, but failed. That boy stuff all seemed quite odd anyway, as did most of human behaviour, and my naivety and vulnerability exposed me to many risks and left me ill equipped to cope with relationships, and understanding and advocating my needs, rights and desires. 

Another negative impact of masking my autism meant I was unable to regulate my senses. I did not recognise or appreciate the impact that noisy, brightly lit, and smelly environments had on me, so I didn’t avoid them or limit them. I forced myself to carry on whilst on the verge of total overwhelm – or I shut myself off so that I could function without feeling anything at all.

Opportunities for gaining knowledge, and for developing decent coping strategies, self-advocating and asserting myself were denied due to my survival strategy of masking my undiagnosed autism.

But…

I’ve done OK, I’m beginning to thrive and I’m recognising my potential and the value of my uniqueness. I’ve got to this point through gaining acceptance of how I am, and by playing to my autistic strengths.

What has this journey looked like for me?

My journey is ongoing, I certainly haven’t arrived at a destination where I have found my purpose – but on the good days I am beginning to thrive instead of just about making it through yet another day of struggles. Life has become less of a struggle – but there was no “Eureka!” moment of throwing away that mask, embracing my autism and finding the world had suddenly become welcoming of my neurodivergence. The world remains biased towards people who on the whole are not like me, society still needs to change and become more inclusive. I am grateful because I have more insight and opportunities than I have ever had that I can use to make my life better.

Unmasking and being authentic

I have always wanted to be accepted for being me, I have longed for people who will appreciate my questions; my unique perspectives; and my differences. But that doesn’t mean I can act impulsively or disregard other people’s feelings – even when those feelings are very different to my own and seem illogical to me.

Humans are social animals. I find social occasions challenging due to my sensory and cognitive processing, but I recognise that I have social responsibility towards my fellow humans. Like many autistic people I am passionate about equality and fairness and I become distressed at the injustices I see in the world and continually seek ways of balancing inequality and making the world a better place.

So taking off my mask and behaving authentically autistic by stopping people mid-flow to ask for clarification; or correcting someone who has made a mistake; or publicly laying on the floor rocking and crying because the noise, lights and smell of the room have become too unbearable; or distracting everyone else by moving about; or telling someone exactly what I think of them – these are all things that are genuinely “me”. They are my default settings in some ways – but should I take that mask off and show them? Or should I keep it all in and hide how the world is making me feel, keep the mask on and let my identity and self-esteem slowly erode away?

For me, the answer is “neither”.

We are social animals; our actions usually impact upon others. Our actions create responses in others and shape their attitude towards us and how we are subsequently treated – whether this is right or wrong means nothing. There are consequences for everything we do.

There will be times that I am blunt, I will say what I think, I will correct people or stop to them mid-flow in conversation. I will need to move about in order to regulate myself. I will experience sensory overwhelm in such a way that I am debilitated by it sometimes. As I said before, these are my default settings – I did not choose to have senses that work in this unfiltered way. I do not choose to take things literally. I am driven by seeking balance and find injustice so very “wrong” I cannot turn a blind eye to it. In fact, many of these so-called aitistic deficits that I was born with, are also my autistic strengths.

Can I unmask then without experiencing negative consequences?

I believe that everyone masks some of the time. It is what makes us human – and social. No one can be unfiltered, or impulsive, all the time and function well socially.

So, I choose not to mask my autism – I own it!  And that means being proactive and taking responsibility for myself as well as others. Here are some examples of ways I am authentically autistic:

  • If I know something is going to be difficult, I prepare. I don’t mask my autism to myself either! Going to town is tough so I plan short trips, I take headphones and my bottle of water. I keep scented nasal inhalers in my bag. I don’t keep pushing myself but take time out to regulate my senses and take stock of the situation. I am proactive so that the chance of me becoming overwhelmed is reduced.
  • I make arrangements prior to needing adjustments wherever possible. I let someone know that if they are holding a meeting, I will need the agenda up front. I ensure people know that I prefer a text first if they wish to speak to me on the phone. Or if someone just calls, I don’t answer but ring back later when I feel comfortable rather than answering and becoming stressed. If I am entering a conversation where I am likely to need to ask questions, I’ll ask upfront how to do this best. “I’m much better at taking things in when they are written down, do you mind if I make notes please?” or “I tend to lose track if I need clarity, is it ok to interrupt to ask questions if I need to please?”.
  • I am assertive. If I am asked to do something that will be difficult for me I will state my needs up front without needing to justify them endlessly, make excuses, or apologise for how I am: “Emma, would you like to come to a party on Friday?” “No thanks, I really don’t enjoy parties myself, but I hope you all have a lovely time, thanks for asking me”
  • If I need to regulate myself, I will politely leave and go and do whatever I need to do, rather than trying to get through the situation silently whilst hiding my needs or disrupting everyone else. I will keep things to hand that help me – I may have things to fiddle with, to stroke, to crunch on, to drink. I’ll choose the chair that suits my needs best and I’ll sit near an exit and I’ll ask if there is noise or lighting that can be adjusted if need be. 
  • I am quite a private person, so I tend to state my needs with little explanation and add to that if necessary. I do not need to justify why I need things to be like they are. Sharing my diagnosis is occasionally helpful but frequently people don’t have a great deal of knowledge about autism and may even misunderstand it. If I am not in the mood to be their teacher, I don’t have to be! It is ok to say “I am not able to wait in this queue because of my disability, please can I go straight in?” I have frequently found that if I am assertive, people will respond more positively than if I bombard them with information about why I need something.

What really, really helps?

Like many autistic people, I have a life full of effort. Effort to fit in, or effort to hide how I really am. Effort to not offend people. Effort to understand how everything works.

Even my unmasking is full of effort. My unmasking means I own my autism and I am proud of who I am and what I have achieved. But, my autistic default settings, as I like to refer to them remain unchanged. I do not choose to be blunt in order to offend people – I am puzzled that some other people do not value honesty as much as I do. I do not ask questions to annoy people, but to understand them better. My need for peace and quiet is not done on purpose to be awkward. My logical way of thinking that is so useful in some situations may seem out of place when it comes to interpreting hidden meanings or reading between the lines – but I accept that many people prefer operating in  this complicated, tricksy – dishonest I  might even say – way. 

I can’t really hide these fundamental facets of my personality. I don’t feel a need to apologise for them either. My autistic deficits (if you view autism in a medical way) are also my autistic strengths: my integrity, my eye for detail, my innovative ways of thinking, my passion and depth of knowledge.

All humans have strengths. All humans are imperfect. That is something that unites us – autistic or not.

So, when I do act authentically me – yet offend you, please remember this: I am probably doing my best. I am probably not being deliberately annoying or trying to point out your errors. I may have defaulted to the wrongful assumption that you see the world as I do. Please try and see the world as I do for a moment too.

I will take responsibility for myself and accept my social responsibilities. This means that I recognise that not everyone else experiences the world like I do, and my actions may be interpreted differently to how they were intended. It helps me when non-autistic people reciprocate and take my perspective and discover how I am perceiving the world. When this happens, they may realise that my lack of eye contact is about conserving my strength for concentrating on their spoken word, rather than becoming overwhelmed by the deluge of sensory information that comes from eye contact. Then it becomes less important to them as they understand that I am not being rude. Then our interaction becomes more positive.

I believe that autistic people compromise, and even deny their needs endlessly. Masking our autism means our needs don’t get heard or met. We constantly try to fit in with a world that may feel alien. My description of how my unmasking works demonstrates how important my sense of social responsibility is. Just because I don’t like hanging out with people for fun, doesn’t mean I don’t care about them. Perhaps if more people were willing to meet me halfway when it comes to communicating authentically, we would have more fun!

Categories
Uncategorized

How I learn….and the difficulties this causes.

“Non-vascular plants tend to be small, but some grow quite large”

That was one of the last pieces of information I remember hearing in a classroom. It also gave the kiss of death to my academic endeavours at that time.

I had wanted to study this particular ecology course for years and finally took the opportunity following redundancy to enrol on a course. It was mostly practical – hooray! It was topic based – even better! And it was my absolute favourite subject, and I already knew masses about it – I’d be surrounded by other interesting mature students and we’d spend loads of time outdoors in the field and minimal time indoors – what could possibly go wrong?

What went wrong was that my way of thinking, learning and understanding was completely incompatible with the course providers way of explaining, teaching and describing.

What would have helped me when the lecturer described non vascular plants, was an example, a diagram, a photo or something to get my head round so I understood what they meant.

What actually happened was this conversation inside my brain…

“NON-VASCULAR blah blah blah SMALL, SOME blah blah blah LARGE”

I started rooting around (pardon the pun!) in by memory bank for a seed of information (sorry!) that I could grasp hold of to help me clarify what the lecturer meant. Imagine the mental equivalent of searching in your laptop files for a folder named “non vascular plants” and the computer processor whizzing through every available file one by one to find the best match.

At that moment what I actually needed was to press pause and make the teacher stop while I searched for information. I don’t possess a speedy processor like a computer has, and that’s not how education works. You can’t put people on pause, it would disrupt them and everyone else. So I did the next best thing…

I took a deep breath, braced myself for looking stupid, and stuck my hand up. I tried to catch the teacher’s eye, but without having to make eye contact – not an easy task! Fortunately she noticed me and I asked “Can you give me an example of a non vascular plant please?”

And she said…”I’ll get on to that in a minute” and carried on describing the various attributes of non vascular plants:

  • They don’t have special tissues for carrying food and water (xylem and phloem)
  • They tend to be smaller than vascular plants
  • They don’t have seeds
  • They prefer water

So now several things were happening inside my head.

  1. A voice from my youth was telling me “See what you’ve done? What a stupid question. Everyone else knows apart from you. You need to sit still, everyone hates the person who asks questions. Even the teacher. See, she won’t even answer you”
  2. So I had a bit of a mental battle with that unpleasant voice, along the lines of “It’s fine to ask, you need an example so you can create a visual image in your head and get on with learning. Stop giving yourself grief. You are 46 not 6. You are not at school. You know this triggers you. Relax. You’ll do fine”
  3. I was aware that the teacher was still talking but I was actually too engrossed in my internal battle to know what she was saying.
  4. I was also aware of the fly buzzing (interesting) – the lights flickering (ouch!) – the pencil tapping (annoying) – the chair scraping (aaaahhh that HURTS!!!) – the breeze through the window (nice) – the bird outside (I wonder what it is and what it’s doing?) – the breathing of the woman next to me (creepy) – the minty breath of the man across from me (yuck, I hate kissing people who chew gum, it’s icky and sweet and minty cold – I hope I don’t have to kiss him – get a grip Emma, why would you have to kiss him?!) – keep your hand still Emma – DO NOT do that hand thing you do to calm yourself down – take a drink of water instead (you’ve overpoured it and it’s running down your chin stupid – don’t think about the horrible cold wetness) – the brightness of the whiteboard and the reflections on it (don’t even look!) – the people walking past (FFS don’t they know I’m trying to concentrate) – sit up straight ( that’s ‘A VERY IMPORTANT THING’ in education, the ability to sit on a chair properly) – when did I last pee? I hope I don’t need to go. Do I need to go? Goodness knows, but what if I do? (panic) – the ceiling tiles don’t match (why don’t they match?) – keep your hands out of sight Emma, for goodness sake don’t calm yourself down (they already know you are thick because you don’t know what “large” means – don’t let them see you are weird too) – the picture on the wall is crooked (why??!!!) – and the myriad of other things that were of absolutely equal importance to my brain at that moment – and always, always are.
  5. And I was still trying to work out what was meant by “Non vascular plants tend to be small, but some are quite large”. My brain was thinking…”Small like a tennis ball? Or an ant? Or something else? Empire state building large? Or an elephant? Surely not, what else is large, I wonder what it can be large like?”
  6. I am a visual thinker. When someone says a word, I create a picture in my head. That’s possibly why I am more comfortable in the world of science and tangible things rather than in the world of abstract ideas and fantasy. I can do abstract ideas, but I need to make them concrete somehow. That’s why I love analogies and sharing examples of how autism works in practice and what is going on undercover.
  7. I had no picture of a non vascular plant to use as a starting point. I had nothing to measure “small” and “large” against. Further describing the attributes of a non vascular plant added additional processing demands. Learning that a thing I cannot imagine anyway, has no seeds and no xylem or phloem is asking me to take an unknown and then asking me to take stuff away from it. My brain was ready to pop.
  8. And all this reminded me why me and education don’t work. And my self esteem plummeted.

So whilst I appreciated the teacher’s need to get on with the lecture, I was left floundering…and behind everyone else in the class. If she did go on to give an example of a non vascular plant, I missed it. My urgent attempts to block out all that unfiltered sensory information, soothe the tormented schoolchild in me who was busy reliving the trauma of her early educational experiences, and work out what a non vascular plant could actually look like, got in the way. In fact, it could well appear that I interrupt and then don’t bother to listen to the answer. In fact, I am sure I’ve heard teachers tell me exactly that!

Some vascular plants – complete with xylem, phloem and roots. And my lovely swing – ideal for regulating my vestibular system after a stressy day in education!

So what could have helped?

Easy. A simple response to my request for an example: “think mosses, liverworts, low lying plants without roots and seeds, non-vascular plants tend to love water” would have been fine.

That would have given me enough to go on.

Or this could have helped if it was displayed on the Powerpoint presentation. Thinking visually doesn’t mean you need to give me a physical picture. It means you need to give me the information I need to create a picture for myself:

Or something like this may have helped me and would have been quicker to process than the above example:

Any of these three ways of giving me an example would have enabled my logical brain to work out how to define “small” and “large” and identify what was meant by non vascular plants. I would have known that the Empire State Building was a bit much because I could have applied my understanding of “oh, it’s something like a moss – of course, if it’s large it’s not likely to be tall because it is not rigid enough” etc etc

So why did I feel a bit thick?

Because everyone else “already understands” what large means in this context. So why don’t I?

I have an open mind, of universal proportions. It is unfiltered and massive and capable of zooming into the atomic level in order to understand something, and then zooming back out again and looking at it from every conceivable angle – plus a few inconceivable angles too! This is why I am renowned for “thinking outside the box”, talking utter nonsense, and coming up with some inspired ideas – and half the time I am not sure which is which. I am not constrained by convention or accepted hierarchies or preconceived ideas.

My world is not only big and unfiltered, it is fluid and shifting and changing all the time. My sensory processing works in such a way that my experiences of sensory information fluctuate. We all experience this – think how much louder a noise sounds when you are scared and alone at night. Or how everything looks brighter when you are happy. My brain needs much more, or much less sensory information to register the sensation than some people do anyway, and this is further affected by everything from my mood, to my health, to the type of environment I am in and how busy, bright, loud and smelly it is.

What I “know” about the world, does change from moment to moment because my reality is chaotic and ever shifting due to the way my sensory processing system works. I create order, predictability and systems to understand things and to anchor myself to. I learn facts off by heart. I match the unknown to the known in order to learn. It is completely feasible to me that “large” could mean elephant size or the Empire State building size.

I have no natural filters, to help me find the “correct” answer, so I use my own filters. They are called “taking things literally” and “logic”. I impose routines and structure to give me that order and predictability that is missing from my world. The more chaotic my world becomes, the more I rely on my filters.

When I don’t have enough information and apply logic or take things literally it can expose truths that others gloss over and miss – I notice things or patterns that are frequently overlooked by other people. It can also involve me appearing to misunderstand things. I may have made perfect sense of what I know – but if what I know is only part of the finer detail, and not the bigger picture, I could be completely on the wrong track.

I struggled through the rest of that day on the course, determined to prove I had what it takes… I didn’t. I had further struggles with following instructions – “go and gather some plant material” was followed by me sneakily watching what my classmates were doing and copying. I knew “plant material” didn’t mean a whole tree but WTF did it actually mean? The trouble with sneakily watching and copying, is it rarely goes undetected. In a school setting it can easily result in taunts of “look at her copying us, do you want to be our friend Emma?” followed by laughter and further mocking. Explaining my way out of that situation by telling my classmates in a completely honest and logical way “no thank you I don’t want to be your friend, I don’t even like you” does not actually result in appreciation of my honesty, or even relief that thank goodness the weird kid doesn’t want to be their friend. It further alienated me from my classmates and made teachers think I didn’t even want to try and fit in.

I got to the end of the first day of that weekend long course, ate my meal in the communal dining hall – further sensory and social nightmares – all whilst desperately trying to convince myself I could do it and I wasn’t a total failure. But I couldn’t do it. I went to bed and awoke at 2.30am and spent the next 4 hours crying and tormenting myself about how useless I felt.

Some plant material.

I am sharing this glimpse into a few hours of my life to show how my brain processes things. The way I logically think and the way my sensory processing works. But what I really want people to realise is the impact of these things. I cannot help how I am. It is not a choice. I am not deliberately asking stupid questions, or not listening, or getting distracted.

“Trying harder” adds a further layer of pressure that alerts my senses to scan for danger and my brain to process the sensory information it is receiving in more extreme ways – everything gets even louder or even brighter – or I can no longer feel where my body is and what it is doing unless I look at it. My world becomes more chaotic and I need more structure. I lose my anchors and come adrift and I have to seek clarity and create order. I suddenly need to ask more questions, I become more literal, I need to do more of those things that that regulate me. I can risk the outcome and not do these things, or opt for self-preservation and mask these needs. The resultant masking is a temporary fix that leaves my needs unmet and chips away at my self-esteem and identity.

There is a living, breathing, beautiful human being behind every assumption we make about what autism is or isn’t. My face may lack expression, I may look bored or distracted and like nothing bothers or effects me. But look back at the sheer volume of processing that I am doing to understand a “simple” statement. Look at the additional things I am processing – all those sensory experiences that are clamouring for equal attention with each other. Reflect on how every single one of those sensory experiences has an associated thought, emotion or train of questions to additionally process. Think how complicated and painful and distracting and distressing that may feel, how hard I am trying to cope and fit in. Perhaps you know of autistic children that look like they are keeping it together at school and then come home and collapse from the sheer overwhelm? Consider just how overwhelming it actually IS for them. Feel humbled that they can take their mask off with you.

Do you know what would help in this situation when accessing education?

Autism awareness? Perhaps… A little bit maybe.

Autism training that teaches the traits of autism? Absolutely useless in this situation.

Acceptance? That would be nice – but actually you shouldn’t be accepting that a fellow human being is in this state of distress.

Kindness. Absolutely, but ONLY if you know what kindness means for me.

So what would help me most is for you to recognise that I am a fully human, three-dimensional person, with an inner life as complex as the next person’s. I am unique, I am not lesser, or somehow not taking it in, or unable to understand things. Every single human being is unique. I have explained my experience of learning and each of us will have our own unique preferences, strengths and needs. Adapt and respond to every individual. On a practical level, I need very, very simple adjustments:

  1. An adjustment of attitude. You need to accept that my world and your world could be very different. But each are totally and utterly valid. No amount of adjustments in the form of equipment, support or special adaptations will work if your attitude towards me doesn’t adjust. It’s a reasonable expectation – and a right.
  2. Start small. adjust the environment based on what everyone needs. Encourage people to sit where they are most comfortable. Near a window, facing a door, whatever.
  3. We all benefit from regulating our senses. Do we need all those lights? Can we get rid of some of the background noise? Reducing the amount I have to process with some of my senses gives me a better starting point for learning. Having the option to increase sensory input can help too – let me move when I need to. So how on earth do we balance everybody’s needs if we are all different? Remember we are whole people. Maybe I don’t like noise when I am working but you do. You like lots of light and I hate artificial lights. So I wear my headphones and you sit by the window. Autistic people are frequently great practical problem solvers. We can help each other. And as a whole person, I recognise that my senses do not work in isolation. If I cannot control the noise, I can regulate my other senses, it still helps. If I am autistic and have got as far as being sat in your class, I will undoubtedly be a resilient person with extensive experience in handling adversity and distress. Ask me about me.
  4. Please answer my questions. If someone is bold enough to ask, they clearly want to know. Do not assume that because it is not important to you, it may not be important to them. You may be enabling them to continue a train of thought that would otherwise derail.
  5. Allow students to photograph or record lectures. That way they can replay them or feel comfortable in distracting themselves or regulating themselves when they need to, without losing track.
  6. Recognise different learning styles. I absolutely must have information in the right order so I can build up a picture. Some students need to do things practically, others prefer listening. Recognise your own biases if you are a teacher. I stayed away from describing learning styles in depth in this blog, because it is more important to focus on each individual’s needs.
  7. Lack of understanding does not mean lack of intelligence. Ability in one area does not mean ability across the board. Difficulties in one area do not mean difficulties across the board.
  8. Ask people what they need. Ask in a way that is practical. If you say “what do you want?” It might sound inclusive and as if it is offering me choice, but how do I narrow down what the options are? The question is too big. Instead ask me which is preferable between option a and option b. Learn from the experts – the ones with lived experience.
  9. It can take me time to process things. I may have a question about something you said five minutes ago or five days ago. Build in time for this and make it perfectly acceptable to ask. It does not mean I am slow or not paying attention. Remember how much extra stuff I am processing just by being in that room. If you ask me something, give me time to process it. Don’t ask me again but in a different way because you assume I haven’t understood. You will double my processing, not reduce it.
  10. And remember that each of us has a life full of past experiences that will undoubtedly have played a part in how we feel today. Stepping into situations that highlight our struggles is a risky business. Respect that.

I haven’t been back in a classroom since. I left the course deeply disappointed. I was the child whose parents were told when they dropped 4 year old Emma off on her first day of school – already reading and writing – that she was destined for Oxbridge. It never happened. I have a photographic memory and love learning so sailed through my GCSE’s with no effort. Two attempts at A level courses and two attempts at a degree – the second attempt lasting less than an hour! None worked out for me. I found employment and worked my way into a successful professional career. I even completed a MA successfully via distance and work based learning. I am writing this blog to share some insights that may help people. I also need to process what all this means for me as I embark on my PhD research. Again by distance learning, but this time with me owning my autism and asking for support and understanding upfront. My research is about employment and neurodiversity. Unlike education, the world of work is a place I have largely thrived. But for many autistic people that is not the case. This is where I hope to use my positive experiences to change things for other people.

Categories
Uncategorized

Autism and Consent.

Sexual consent is a complex topic. As an autistic person I find it particularly difficult to define as there is no straightforward, succinct, universal definition that enables me to firmly place A,B, and C into the category of “non-consensual” and  D, E, and F into the category of “consensual”.

As parents we are doing our best to bring up a child who is as safe as possible from potential mistreatment or abuse, and who understands how to behave kindly and respectfully towards himself and others. As our son entered his teenage years, we recognised just how complicated it is to teach someone “rules” about anything, let alone consent.

I went to the dictionary for my first definition of consent: permission for something to happen or agreement to do something. That is a fair enough definition but leaves far too many questions that my pedantically autistic mind jumps on straight away! It certainly doesn’t take into account the bigger picture where people are duped, coerced or threatened into giving permission to have sex. Or to be touched or touch someone else sexually.

My second definition was from ‘The Code for Crown Prosecutors’ – a public document, issued by the Director of Public Prosecutions that sets out the general principles that should be followed when they make decisions on cases. The definition they use is: Section 74 defines consent as ‘if he agrees by choice and has the freedom and capacity to make that choice’. The Code gives examples and elaborates on issues like conditional consent; intoxication by drink or drugs; and reasonable belief in consent. This felt like a more comprehensive definition to me and includes capacity as well as choice.

In my professional background I have extensive experience of the Mental Capacity Act 2005 and how we assess whether individuals have capacity. The Act sets out 5 principles to consider when deciding if an individual has capacity to make a decision (such as consenting to a sexual act) and only applies to adults. The law is very clear that sex with a child is illegal regardless of whether they have given permission. With adults, there is always an assumption that the person has capacity to consent unless assessed otherwise. The Mental Capacity Act states: “a person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain.” Some people may lack capacity on a permanent basis, whereas others have fluctuating capacity that can vary from day to day. This could be because they have a mental health condition or are affected by medication for instance.

When risk assessing situations in my professional role, I have found that supporting autistic people to take positive risks, where they have the same rights as everyone else to make mistakes or poor decisions, is complex. It can be fairly straightforward to identify sexual risk in a person who is vulnerable because of a very low IQ and severe communication problems that means they are unable to weigh up the information and make a decision. But when I am supporting people who are perfectly able to think through complex problems and access the same pubs, clubs and social events their non-autistic peers do, it becomes more difficult. I know from personal experience that my cognitive processing is adversely affected when my brain is having to process excessive sensory information. (For those of you reading this who aren’t autistic, imagine how it feels when you are trying to think about something important and your partner has their music turned up full volume on the radio – that level of not being able to think straight is commonplace for many autistic people all day every day. Many of us are hypersensitive to sounds, aromas, and visual information and find the typical background noise, light, and smell feels intensely overwhelming). The types of venue where people often meet up to form relationships tend to be overwhelming on a sensory level. Possibly not a good starting point for an autistic person. And this is before we even factor in all the social demands, the reading of body language, interpreting whether someone is interested in you or not, or what you may or may not feel about them.

I’d like to take you back to the 1970s and 1980s when I was growing up. I learned about the biology of reproduction as a child. Like many children, autistic or not, it didn’t really make a lot of sense to me at first but following science lessons at secondary school I had a fair grasp of the mechanics of it and its purpose for reproduction.

It was many years before I appreciated that sex could also be fun, loving, exciting, a mutual experience and a choice.

I learned about something else in a school talk, although it didn’t mention sex at all. This was possibly dangerous and disastrous for many children. We watched a film about not talking to strangers who stop their cars and offer you sweets or visits to their house to see their puppies. I had absolutely no idea this was about sexual abuse at all. I imagine that many children would not have applied the  messages of this film across other contexts e.g. someone that wasn’t a stranger grooming them for sexual contact.

I learned the playground language of relationships but had no idea of the meaning of some of the terms. Consider for a moment how autistic people may have a tendency to interpret language literally. I am well aware that lots of spoken and written language has more than one meaning and I’ve learned lots of idioms and metaphors off by heart. However, I mask my autism quite frequently in order to look like I have some sort of a clue about what is going on! If I didn’t, I’d be asking questions endlessly, and I am well aware this can make me appear stupid, inattentive, or naïve. I am less bothered by this as a middle-aged woman, but as a teenager I had enough problems already without adding to them! I am sure you can all think of some sexual terms of your own – take a step back from what you know they mean and just think about the words – it is ok to laugh about any potential disastrous misunderstandings!. I’ll give you an example to start you off. Words used to describe kissing someone passionately: Snogging, necking, getting off with, making out, French kissing, smooching.  None of these can be interpreted in a logical and literal way to help you work out what you are actually meant to ‘’do”. How do you consent to something you don’t understand? Especially when you are putting so much energy into just working it all out.

Many of the girls at school read teenage 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. This was useful because it gave me some proper concrete information on how to have relationships with boys. I wasn’t interested in having a boyfriend but knew it was a normal part of growing up. I didn’t enjoy eye contact or close physical contact and I struggled to read body language and interpret other people’s emotions but at least these magazines gave me some tips.

I worked on how to flirt and how to tell if a boy was interested in me but unfortunately knew nothing about consent and I had absolutely no feelings towards anyone at all back then. It was a purely scientific approach to ‘getting it right’ and not based on what I wanted for myself. In all honesty I had no idea what I wanted, but was desperate to mask my awkwardness and lack of understanding. I had brief relationships and encounters with boys in order to fit in.

Of course, if people are having lots of relationships because they think it is what they ‘should’ do, they run the risk of appearing promiscuous. Peer pressure is inevitable for young people growing up. It is also very powerful – as is gaining a reputation as someone who is promiscuous. Autistic people have told me that they have developed reputations and attracted lots of unwanted sexual interest from others  because they are perceived as ‘easy’. Instead of it helping them to fit in with their peers, they have felt excluded, labelled and their self-esteem has plummeted further. It can be common for autistic people to continue doing things in the same way, even if they don’t work. I blame this on our society’s focus on “just try harder”. If I am doing X in order to fit in, and it isn’t working, I need to try harder and do X even more!

Masking is a topic I have written about elsewhere. It plays a significant part in any discussion about consent. I wasn’t really masking my autism as such. For a start I didn’t realise that my awkwardness and differences were autism. I masked my needs. My need for clarity – by not asking the questions I needed an answer to. I masked my need for sensory regulation – by suppressing any desire I had to intuitively move my body in ways that were calming, soothing or helped me to concentrate or simply feel joy. I copied my peers way of talking and acting in certain situations in order to fit in better – mostly I was happy being a loner with unusual hobbies, I had a strong sense of knowing what I believed in and was interested in, but I also knew that if I looked any weirder than I already did, I would probably continue to be bullied and teased. I felt quite sad that people thought there was something wrong with me. My self-esteem was already low because I knew full well there was something different about me. I tried my best but was frequently bullied. This knocked my self-esteem down further. I tried even harder to get it right.

EPSON MFP image

I will recap on the themes I’ve touched on above and relate them to the issue of consent.

  1. Capacity fluctuates. Autistic people often find the world overwhelming, and the more overwhelmed we are, the more difficult it is to make an informed decision around consent.
  2. Autistic people may take language literally. Any topic that is taboo (sex, death, finances etc.) has lots of euphemistic language associated with it that makes it even more difficult to understand. We may not generalise information very easily and therefore not realise that the ‘stranger asking you to go see his puppies’ is referring to a similar scenario as ‘an adult relative or friend of the family asking you to engage in sexual touching’.
  3. Autistic children may try and fit in with their peers by copying behaviour, doing what they feel is expected, or obeying adults.
  4. Understanding body language, subtleties in conversation, flirting and whether someone fancies you is complex and easy to get wrong.

­Educating people about consent and how to recognise and avoid situations and interactions where consent may become an issue

We have had discussions with our teenage son about consent and never pushed him as a young child to kiss relatives or accept hugs unless he wanted to. He knows that people may feel under pressure to conform in relationships – either to a partner’s requests, or a peer group, or societies expectations.  It is a complex subject with no rules to fit all circumstances. My best advice to others has been, if the situation is not clear cut or you are not sure then don’t do it. Outside of a relationship where you 100% know the consent is there then it is better to regret not doing something than to do it and wish you hadn’t. Consent is about having a choice. If it doesn’t feel like you can choose or the other person can choose, then it’s not consent.

Teaching children to do what adults say because they are adults is not a good idea for anyone, let alone an autistic person who takes things literally. It is difficult to teach rules about sexual behaviour and how to spot potential abuse or grooming activity. The only thing I feel I can do as a parent is to be open and willing to discuss anything with my child.

Sex education needs to include more than biology. I believe that people are at risk because of a lack of the right knowledge about sex and relationships – it’s like teaching someone mechanics and expecting them to not get run over just because they know how a car works.

Sensory processing and consent

I was very vulnerable because of my lack of understanding of sexuality. I knew the facts but knew nothing about the existence of desire as a teenager. Our interoception (the sense system that lets us know how we feel internally) is significant in issues relating to consent. 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. I knew how to behave appropriately though. I was polite, I did what I was told, I obeyed adults. I also tried to “act normal” and fit in with my peers. This coupled with my particular interoceptive processing means I can put a lot of effort into getting things right, rather than considering my own feelings. I have autistic friends whose interoceptive processing works in a very hypersensitive way compared to my hyposensitive interoceptive processing.  They feel sensations intensely and frequently whereas I feel fewer emotions or sensations. They too may have experienced issues with consent. Someone like me may not feel any attraction to another person but go out with them because it is the proper thing to do. My hypersensitive friend may feel attracted towards people instantly and passionately and pursue a relationship or sexual encounter without fully considering if it is what they want.

Our other senses play a significant role too in relationships and issues of consent. Some people are hyper or hypo sensitive to touch. They may excessively seek physical contact or avoid it. Either of these responses can impact on the ability to consent. The person who needs lots and lots of physical contact in order to register the sensation, may invade other’s spaces or touch them more than is acceptable – there is a risk of them being accused of sexually inappropriate behaviour or being seen as initiating sex. The person who recoils from gentle touch because they need firmer touch may be drawn to sexual partners that are rougher. Other senses play a part too – sex is a multisensory experience. Autistic people often process sensory information in muted or intense ways. None of these sensory processing issues are insurmountable in an established relationship – mature sexual relationships are based on partners being responsive and considerate, the difficulties tend to be more problematic when building relationships or choosing potential partners.

Some people cope with sensory overload by shutting off or zoning out mentally. This may increase vulnerability because their capacity for making decisions about consent is reduced.

How do we help people make informed decisions about consent?

Consent is a difficult concept to capture in a universal definition. Capacity to consent fluctuates too, particularly for autistic people who often have atypical combinations of strengths and needs. Someone may have excellent verbal skills and be extremely articulate and able to problem solve a theoretical problem, but struggle to multitask the sensory, social, and interpersonal aspects of relationship building. On first impressions this person may appear completely able to consent but actually he or she is extremely vulnerable.

Explaining your potential difficulties, saying that you are disabled or autistic may be useful (or not!) for getting help when struggling at the supermarket, at college or in work. It could increase your vulnerability in a potential sexual encounter though. A decent person would understand, back off and take their time. Other people may take advantage of your vulnerability.

Denying autistic people the opportunity to take risks and make mistakes won’t help them develop skills in learning about what they want from relationships. Open discussions using accurate, frank and honest language with our autistic children, family and friends may help them explore issues and develop strategies that keep them safer and help them make informed choices.Giving autistic people accurate and explicit information about sex, where they can ask honest questions without fear of ridicule or exploitation in a safe environment is essential. There are very few opportunities for this sadly.

Teaching people the reasoning behind rules may be more effective than teaching rules. We may hear that “Yes means yes and no means no”. It’s quite easy to opt for simple rules when you are a very rule driven autistic person. This sounds ok on the surface but actually there are lots of times that yes means no. There are even times when no means yes. It is unlikely that you can learn every variable so asking yourself questions about whether this is something that is safe, is legal, is something you may regret afterwards, can be more effective than rules. And for me, the big question is “do I have a choice?” If the answer to that is no, then it is not consenting. Similarly, if my partner does not have a choice then that is not consensual either.

A difficulty with having a rules-based approach can be the inevitable exceptions to the rule. Think about this scenario… I tell my son that he must never show his private parts to an adult. OK – so what about a doctor? A doctor’s OK. But unless I specify that I only mean medical doctors; that you are visiting specifically about your private parts; in their surgery at an appointment and not anywhere else; etc etc. there will always be exceptions to the rule. Autistic people may struggle to place learning from one context into another context. We run the risk of the “Don’t talk to strangers” campaigns from my youth that failed to mention that most abuse is perpetrated by someone you know – and has nothing to do with puppies.

It is likely that people will end up in situations that they wish they hadn’t.  Some people will have non-consensual sex. This non-consensual sex could be in the form of rape (as defined by the legal system), or it could be other forms of illegal or coercive sex. The person may have given permission but not technically consented. They may have felt OK at the time but regretted it later. Some people will encourage other people to engage in non-consensual sexual activity, this could be forceful or manipulative – they may or may not recognise the other person’s lack of capacity. The participants may or may not consider whether they were consensual experiences or not. Both partners may be non-consenting. People may consent at the beginning but change their minds. There are far more complex situations than there are simple “this was right and that was wrong” situations. In my professional capacity I have been involved in many, very complex safeguarding situations.  Most aren’t black and white.

The complexity may mean it is difficult to apportion blame. Sometimes the fault is easy to identify. The law and public opinion is clear about particular acts. It may be more productive to move away from blame and fault when discussing consent in the less clear-cut issues and move towards the impact of the encounter. How has it affected the person? What can they learn from the encounter to help them be safer in the future? Feelings of guilt may or may not occur relating to any sexual activity.

It can be said that autistic people struggle to understand the intentions of non-autistic people. To an extent, I would agree. I may experience this as some non-autistic people being liars, full of hidden meanings and insincere. Of course – this mass generalisation is grossly unfair, and as untrue as autistic people being perceived as blunt, unemotional and rude. The ‘double empathy problem’ theory in autism explains this well. We can all have difficulties in understanding each other, regardless of our individual neurology, but when people of different neurotypes interact, there can be added dimensions to this.

Autistic people are frequently infantilised. Disabled people are often thought of as non-sexual beings. Social situations can be tricky to navigate because of all the sensory processing, unwritten rules and complex protocols that others seem to intuitively know but we don’t. This all adds up to put autistic people at a disadvantage when making choices. We have the same rights to make mistakes as anyone else. But we need to be on an even playing field.

It may be helpful for autistic people to learn assertiveness skills and about boundaries. This can help us advocate our needs and reduce the need for masking. Masking often leads to small issues building up into bigger and bigger ones because our needs aren’t shown, recognised or met. Learning to identify what we want and ask for it effectively can be powerful.

Learning about our bodies, emotions and senses is important too. Having a lifestyle where  we regulate our senses and emotions as part of our daily life will help us be in a better place for making decisions and choices. For those of us that have sensory processing issues that impact on our ability to consent – we may need to find strategies that work as an alternative. For me, I don’t feel like or dislike or desire towards people instantly. My interoceptive sensory processing is slow and it can take time to know how I feel about someone. If I was single, I would make a strategy for myself that said “don’t have sex with that person straight away even if they say they really like you. Have a few dates first and find some things you have in common”. My autistic friend who quickly develops intense feelings for other people may devise a similar strategy “don’t have sex with that person straight away even if you really fancy them. Have a few dates first etc”. It’s up to us as individuals to create the strategies that keep us safe and fit our individual lifestyles and beliefs.

Many of my blogs end with a paragraph about us all being human beings and how we should be kind to each other. This one is no different. It is likely that any of us, autistic or not, will find ourselves in situations relating to consent that don’t go to plan. Before we act, we could think about whether we are about to be kind to ourselves and kind to others. It’s a good starting point for deciding if we should consent or not.

I have had feedback about previous blogs where I explore issues like identity and body image. These topics may be painfully relatable for some people. I’d like to share the following:

No one is ever to blame for sexual activity they did not consent to.

No one is ever to blame for consenting and then later regretting it.

No one is to blame for making mistakes or acting in the best way they could at a time when they only had some of the information they have learned since.

There are many reasons for why we do what we do. If you need help or if reading this blog feels distressing then please reach out to someone.

Here are some links to sources of support:

Mind has a list of resources on this page: https://www.mind.org.uk/information-support/guides-to-support-and-services/abuse/sexual-abuse/

http://www.thesurvivorstrust.org

http://www.rapecrisis.org.uk

http://www.safeline.org.uk

http://www.nspcc.org.uk

http://www.survivorsuk.org

References:

https://kar.kent.ac.uk/67614/     Damian Milton Double Empathy Problem

https://www.legislation.gov.uk/ukpga/2005/9/contents  Mental Capacity Act

https://undercoverautism.org/2020/05/31/masking/ A personal blog about masking

Categories
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
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?

Categories
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.

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.

wp-1593261389628.jpg

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.

wp-1593264184497.jpg

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
Uncategorized

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.