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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

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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!

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5 minute read social communication

How I would like to be treated as an autistic person.

How do I like to be treated? Same as everyone else! With respect, equality, compassion, interest, and kindness. But I am autistic. I am disadvantaged just by existing in a neurotypically biased world. This blog isn’t about how and why I should be treated better – I’m a human being for goodness sake, I should not need to ask for human rights! Instead, I would like to invite you to consider the following analogy:

Imagine that I am not autistic (I am). Imagine that I am not British (I am). Imagine I am French…

I am still human and have the exact same human needs as every other person. I share many customs with other people – lots of similarities with fellow Europeans, noticeable differences with some parts of Asia for instance.

I look similar to lots of people – quite often my French-ness isn’t obvious until I speak. When I am chatting with other French people everything looks ‘normal’. When I am chatting to British people I can sort of fit in – English is a common language after all. When I am trying to chat to Russian people, I struggle, and I am obviously out of place. (My French-ness hasn’t suddenly ‘got worse’ or ‘more severe’ by the way!)

So, assuming I am French, and you are British, how do we communicate? We learn a bit of each other’s languages. We find out about each other’s customs so that instead of finding it weird that I kiss people on the cheek, whereas you shake hands to say hello, we understand and accept this – perhaps we even find it interesting and have a go ourselves!

We understand that we have different body language with different meanings, we accept that one of us is perhaps more reserved – or more demonstrative than the other. We take our time when having conversations to ensure we can process and translate the conversation in our heads, and we doublecheck our understanding. We certainly don’t assume I am stupid or slow just because I have to translate your words into my language to think about it, and then prepare my response back into your language too. And you don’t shout so that I understand better – no one is more able to converse in a foreign language just by slowing down their native tongue, doing some actions, and speaking louder – no matter how often it resorts this!

How do we view each other? Do you think I would be happier if I just acted more British and hid that I was French? Perhaps I could learn English off by heart and speak it fluently – but I’ll never lose my accent or stop thinking in French. It’s ok though, you won’t catch it from me! But will you keep encouraging me to try harder to be more British? Lose the accent so no one knows – it’s a bit embarrassing to have a foreign friend. Perhaps you’ll encourage me to hang out with other French people as they’ll understand me better, and I’ll be happier. Maybe we can argue about whether being French or being British is best, or how I ended up being born in France.

No…No one does any of that unless they are a total racist. So, what is so different about autism? How should we treat autistic people?

In the same ways we respectfully treat our French neighbours…

We learn each other’s languages and find out about each other’s customs. We don’t follow stereotypes about what all French people do – we recognise the diversity within each nationality. We invite each other along and don’t make a big deal out of our differences, but we make gentle accommodations like pointing out in advance things that could be tricky. We are genuinely interested in each other and we share and learn. We certainly never write a French phrase book or scientific article about what it is like being French without consulting someone who actually is French. We use bilingual signage where appropriate. We don’t blame the French person for being rubbish at English or tell them that just because they know how to order a drink or ask directions, they should be able to discuss the finer points of Shakespeare.

If I was treated as a human, a three-dimensional, complicated, complex, valid human being that is different in the same way a French person is different to a British person, my life would be much better.

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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
Autism wellbeing

Autism and Self-Care

In the same way that we show kindness and compassion towards others, it is important that we show ourselves kindness and compassion too.

During times of stress, or when we are feeling fragile, struggling, or overwhelmed, it can be easy to give ourselves a hard time, or tell ourselves to toughen up. I often feel that society tells us time and time again to “just try harder”. And time and time again, I keep doing more of that thing that wasn’t working for me – but even more so! I don’t have enough hours in the day to fit everything in, so I stay up later. I don’t have enough energy to even take a shower, but I’ll sort out washing my son’s mountain bike. I keep going, holding on to the false belief that it will somehow make me stronger and better able to cope.

However, resilience isn’t built by doing the thing that hurts you even more so that you get used to it! All that does is teach you to put up with harmful things you should actually be avoiding.

Like many autistic people, I experience sensory information like sound and smells in a different way to many typical people. Some autistic people have difficulties processing how we feel – our sense of interoception may be muted, or alternatively, over-responsive and we can feel bodily sensations (hunger, needing the toilet etc.) and emotions in a less or more intense way than other people do.

I am an ‘under-feeler’. I often don’t know what it is I feel – I’m sure there is something going on but I can’t say what or where. On an off day, if I am lucky I have a general sense of ‘meh-ness’ or that life is ‘probably not ok’. When other sensory input is bombarding me, my interoception weakens further.

Many of my senses are affected in a slightly bizarre looking way. My visual processing can go haywire and I lose chunks of my vision because it’s too noisy. Or something very upsetting happens, and rather than feel sad, I feel seasick when I change my walking pace or direction. The issue is with my neurology, my brain is processing sensory information differently. It is not an issue with any of my sense organs.

All of us experience the world through our senses. This includes how we see, hear, smell, taste and touch the world – as well as how we know where our bodies are and how they are feeling. To function at our best, we need to be in what is sometimes referred to as the “just right state”. This means that our brains and nervous systems can receive, organise and understand sensory input and respond to it in a regulated way.

We all need different amounts of input at different times. Many autistic people need more sensory information or less sensory information than other people typically do in order to become, or stay regulated. Emotional and sensory regulation is about doing what we need to do to get the balance just right. For me, this is the fundamental principle of self-care. Unless I’m in an ok place to start with, there is no point attempting any more sophisticated self-care techniques. The fantastic thing is most of what we can do to regulate ourselves is very straightforward.

If we feel hyped-up or over-stimulated, we may need to calm ourselves. If we are feeling lethargic, flat, or floppy, we may need to do something energising. Regulating ourselves is part of our daily lives for most people and often we don’t even notice we are doing it. If I need to do something a bit nerve wracking I’ll instinctively take a deep breath first. If I need to unwind after a busy day, it feels natural to run a warm bath with some of my favourite scented bath oils. When I want a pick me up, I’ll enjoy the stimulating effect of inhaling the aroma of my mid-morning cup of coffee.

We are also quite natural at co-regulation too. This is when we help each other regulate ourselves. As parents we are often attuned to our children’s needs – I may recognise my son’s distress before he does and act in ways that helps him to regulate himself – whether that’s a hug, or a warm drink, or a wrestle.

I firmly believe that self-care is a disposition rather than a technique or approach that can be got out and used when required. It’s an attitude and a way of living. However, I haven’t always taken good care of myself. I learned the hard way and I struggled for years and used all sorts of unhelpful and harmful ways to regulate myself and cope with the inevitable stresses and strains of life.

As an autistic person I experience the sensory processing issues I described above. I also experience some of the other common experiences that autistic people have:

  • My world feels chaotic and confusing as my processing of it fluctuates daily; depending on the environment, my health, the weather, my mood and how much I have going on.
  • I seek consistency and order so that I have something solid to anchor myself to. Frequently I find the neurotypically biased world we live in doesn’t understand or offer me this stability, so I have to create my own.
  • I seek clarity through using logic and by taking things literally – I expect my honesty to be replicated in others – sadly that may not be the case!
  • My brain is always consciously working out what to do. It can be tricky to pack any more processing into it. It’s easier to rely on learned routines, set pieces, and organisation.
  • My body is always waiting for the next bombardment of sensory pain. If I shut it off I have to stop relating to everyone and everything. If I stay alert, I risk getting hurt.
  • Filters and hierarchies – what are they! I am open-minded, inquisitive and fascinated by everything – but dare not ask in case it’s the “wrong” question.
  • I spend a great deal of time masking. This means I have more opportunities, I’m taken more seriously, I look more normal and so get treated better. It also means I don’t get my needs met because no one knows my struggles. No one answers my questions. I make my body behave unnaturally in order to not upset people. Basically, I encourage my dysregulated state rather than using self-care. When people tell me to just be myself, I feel relieved – then realise they often mean “be yourself – but not like that!”
  • I get immense joy and healing through my senses and feel blessed that I experience things other people may miss.
  • I can focus on my interests with incredible intensity and commitment.
  • I see patterns, trends and details others overlook or filter out.
  • So long as I am allowed to experience it this way, my world is big, fascinating, ever-changing, and always full of wonder.

I frequently feel that I miss the things that many neurotypical people intuitively understand. I have always felt that way. I also feel that autistic people intuitively know what they need to do to regulate themselves, cope with the ups and downs of life and engage with the world. These things we intuitively know may not look very neurotypical. They may even be misunderstood, pitied or mocked. Perhaps they aren’t even considered self-care, simply because they don’t always look like a neurotypical person’s self-care. But my interests, and my sensory connections to myself and the wider world are my self-care. I have learned to play to my strengths. My autistic strengths.

At times of increased demand, an autistic person’s routines, structure, and self-care and regulation can include an increased need for order, timetables, questioning, and repetitive behaviours. This is not a sign of regression; not coping; or ‘becoming more autistic’. It is a similar response to everyone else’s and is driven by the autistic person intuitively understanding what will help them cope. Most people do more of whatever it is they do to cope in times of need. Whether that is writing more lists, biting their nails, hyper-focusing on a hobby, bouncing up and down, rearranging their CD collection in order – or whatever.

Fostering an attitude of kindness towards ourselves is good for our wellbeing. It can become a good habit if we practice it regularly. I had to learn how to make a habit of self-care. My default used to be self-hate. It’s not surprising when you have grown up in a world that is biased towards neurotypical people; that has increased exponentially in terms of the sensory information all around us every day; that doesn’t believe you, or thinks you are ill, disordered, broken or wrong when you try and explain how it genuinely is for you. A world that assumes you are deliberately doing what you do just to annoy everyone else. Surely an intelligent person like Emma can’t be that stupid.

But I intuitively knew I needed to self-soothe. I needed to find peace and calm. I needed to direct my intense energies somewhere. And for many years it was hit and miss. I accidentally stumbled across some good ways of achieving this and some dangerous ways.

It was not natural for me to shift towards self-care. I tried at various points in my life to follow particular methods, models and techniques. I frequently hear people say how meditation just doesn’t work for them; or yoga is a non-starter; or they don’t have time to do anything creative and wouldn’t know where to begin anyway. I’m one of those people. I am highly organised in some ways but completely unable to plan or remember to do any special self-care activities as well.

So I don’t. Well, I tell a lie, I sort of don’t!

Behind a waterfall

I needed to change my attitude towards myself.

Simple…

“Actually Emma, you’re alright really. Don’t take those negative thoughts so literally. Look at your achievements, you’re fab!” But I knew I wasn’t fab. If anyone is going to win a battle of thoughts and words against me, it’s me! Trying to convince myself logically that I was worthy of compassion didn’t work. I learned there was no point arguing with myself. Fortunately, compassion is not actually a feeling. It’s what you do and how you treat people.

But I also knew that I am a practical problem solver. I am not one who is overcome by emotions, and I have never been able to force my emotions anyway. So I stopped fighting myself. It reminded me of when I lived up this really rough track in the middle of nowhere. Friends who attacked the track in their car and tried to conquer it could end up knocking the silencer off their exhaust! I would set out at a slow speed and let the car find the path of least resistance. I’d gently hold the steering wheel but let the car find it’s own way around the potholes and over the bumps. I’d reach the top slowly and surely – and intact.

I didn’t make changing my mindset any part of my journey. Instead, I focused on making a new habit. This was the time where I had to be really organised and plan things with my self-care – it felt clunky and awkward at times. I felt painfully self-conscious and had to keep telling myself to back off when I taunted myself about trying to be compassionate towards myself. I remembered some tips from my music playing. Nigel Kennedy, the violinist says he slows a new piece of music right down so he can play it. And then he repeats it at least 40 times at slow speed. Even when he knows it off by heart and wants to speed up, he keeps creating his muscle memory through accurate repetition. Once it is firmly embedded, he can begin to increase the tempo.

Our brains are not a muscle. But they do have neuroplasticity and can create new pathways. So I practiced. I wrote a list of things to do when I felt bad. I kept it on my phone. They were simple things that would regulate my senses like doing some washing up; stretching an elastic strap; pushing against the wall; listening to music through headphones; eating some crunchy crisps or nuts. They sound ridiculously pointless. How can pushing against the wall stop me from feeling dreadful? But the key was to do them before I felt dreadful – and practice them throughout the day. They are not fixes, they are ways to feel regulated. Once I am regulated, my body slows down it’s search for hidden danger and things begin to gain their true sense of proportion again. Everything becomes more manageable.

I also practice my mindfulness techniques. I have used mindfulness for decades, I occasionally attend classes or formal sessions in order to refresh my knowledge. This isn’t essential, but works for me. Mostly I make sure I do things in a mindful way – once again, it’s a disposition rather than an activity. I may eat part of my meal mindfully – I’ll notice what the food feels like in my mouth, and how it tastes. I’ll put my knife and fork down in-between mouthfuls of food. There’s no way I could eat a whole meal in this way – just by attempting it I’d be putting myself under so much pressure, I’d ‘fail’. So I don’t set myself goals. I just check in with myself several times a day and have a mindful moment. No pressure, no goals, if it doesn’t feel right, that’s fine. Success and failure don’t form part of the experience. If I go a whole day without doing anything mindfully then so what. When I do things mindfully I have moments of peace. Moments of living outside of my busy brain. It really helps. This way of treating myself is compassionate and works well for my personality. I have a tendency to really get into the things I’m into. I’m either no good at something, or I’m an expert! I am either disinterested, or I’m its biggest fan. Self-care can be planned, it can be structured, but it can’t be forced. If it becomes an obsession, it stops being self-care.

How not to do self-care

But I like being into stuff! I quite like obsessing. I certainly love delving as deep as I can into a topic and immersing myself in new knowledge. That’s fine. I see it as one of my autistic strengths. My ability to hyper-focus in times of stress is like a laser beam of positivity piercing the fog surrounding my brain. So I do hyper-focus, but in times of known or anticipated stress like the current pandemic, I have a mantra of ‘wide not deep’ and ‘only positive’. I create myself windows of intense focusing and try not to fixate on only one topic. I have always loved nature and always will. It will always be my escape, my asylum from the urban world. I have absolutely disappeared off down some wonderful rabbit holes in times of stress. I have also focused on other topics too and I have actively distracted myself from immersing myself in struggles that will sadden me or that I cannot change. I may not have contributed to the solution but I haven’t added to the problem either. I sometimes need to be a pacifist and not join some of the wars our world is waging. I need to conserve my energy for my own battles, I need to strategise and conserve my strength for the battles I cannot avoid. I feel lucky that I have an ability to focus and enquire and explore subjects with objectivity and open-mindedness. My self-care involves using my interests as a distraction, to feel good, to achieve and to lose myself. I make sure I use that immense mental energy in a positive way.

I have written a blog about sensory joy and healing. I describe how it feels to experience intensely positive sensory experiences.

https://undercoverautism.org/2020/08/03/sensory-joy-and-healing/

I make sure I prioritise those activities that bring my joy. For me that means walking in the woods; listening to music; having time with no noises from people; time with no questions; mindful moments where I just notice without analysing or questioning. It’s about reducing some of the cognitive and sensory demands.

I may notice myself being unkind towards myself – perhaps I’m berating myself yet again for how crap I am at life. Or perhaps I’m pushing and pushing in the hope things will go right, just because I want them to and I’m putting all this effort in. Sometimes I challenge myself, but mostly I shift my focus. I no longer need my list I practiced with. All that practicing has paid off. I am finding that mostly when things start feeling bad, or going wrong, or however I want to put it, I reach for compassion as readily as I used to reach for a personal insult towards myself. Of course I still feel bad – but I feel less bad about feeling bad. I can feel utterly fed up – but in a safer way than before. The world has not started treating me any better sadly. But I have stopped handing it so many stones to throw at me.

There are other simple techniques I use. These too were part of my practicing and now come more naturally. I read positive things people have said to me in messages. I bake a cake. I avoid interacting with people unless I am fairly certain they will not add to my stress. I do something helpful and kind towards others – it’s quite difficult to treat yourself badly when your mindset is on being kind to others. Even if I think I am the biggest loser on the planet, if I start doing something positive or helpful for other people, my self-loathing shifts.

I find positive physical things to do. Proprioceptive input is massively regulating for me. If I have that horrible sensation in my body that I can’t shift, that is crying out for pain, and that just won’t be soothed, then I mindfully and gently do something that gives me a massive hit of body awareness. Sometimes I think what I want is a hug, but I don’t always want the intensity of another person that close to me. Controlled movements are key. Pushing against the wall; deep massage with an electronic massager; my weighted blanket – all these help me to feel soothed and comforted. I can also create an awareness of my body through moving and enjoying the sensation. Whether that is repeating something that feels good, stroking something that brings me comfort, or even dancing around the kitchen disgracefully when no one is watching. I can locate myself back in this unpredictable, shape-shifting, sensory nightmare of a body again. I can begin to realise it is me and that’s ok.

Sometimes when it all gets too much I switch off to protect myself from further onslaught. It used to be hard to switch back on. I choose to stay engaged more of the time now, but that requires proactive self-care to keep myself regulated.

Here are some suggestions for how you might like to consider making self-care a way of doing things for yourself…

• If you feel yourself becoming tense, angry or stressed, take your time, back off from pushing yourself, take a few minutes to chill

• Accept that sometimes things feel tough and this is not your fault

• Use your senses to notice what you can see, feel, smell, and hear in this moment

• Do something that is fun – dance with your kids, make something, listen to music

• Regulate your senses and emotions so you are more able to cope

• Consider the language you are using towards yourself in your thoughts and words

• Treat yourself in the way you treat your most loved ones

• Make a list of helpful strategies you can go to when you notice you are being unkind to yourself

  • Do something kind for someone else
  • Find one good thing that has happened this year, this week perhaps, or even today. It you feel like it, find another, and another. Let that hyper-focusing mind seek out some positive memories and thoughts.

Categories
Uncategorized

Level Up!

My son started playing an online game called Clash of Clans, about two years ago. He had his first mobile phone and he and a few mates downloaded it.

We had a good talk about online safety and set about learning how to “chat” with other players. In fact I googled a list of text speak and abbreviations so we could decipher all the BRBR’s, CoC’s, and TIA’s.

But the chatting bit wasn’t for us and he convinced me to download the game too and join his clan. I thought it was a good idea so I could a) keep an eye on his safety and b) ‘get down with the kids’ – LOL – and find out what the attraction was with gaming.

Then there was c). Unintentionally I found I quite enjoyed playing, and it provided lots of opportunities for mother and teenage son chats about life, the universe and everything.

The game involves starting from scratch with a base that you can gradually build up with troops of different types, and defenses and resources. You take part in battles and as you win more loot and gain more experience you can upgrade your base and all its various archers, giants, wizards and dragons. You win more money and increase your magical abilities. You can spend your resources however you wish and shape your base accordingly.

And being a game, once you have accumulated enough experience and resources, you can level up. And with that comes tougher opponents to battle and higher stakes.

It’s very much like life. My son mocks the players he refers to as “rushed”. The ones who use real life money to upgrade their weapons while they are still novices and learning their battle skills. They are easy opponents to beat. Their bases look flashy with all the newest kit, yet weak and simple to penetrate and win an easy victory.

It’s a strategy game too – just like life. You can run at your enemy willy nilly, throwing your best bombs and shooting your best arrows and sometimes you’ll taste victory. Or you can plan and strategise and choose your battles and sneak in and win that way – or do all that right and step on a hidden bomb and lose!

There are no sure fire ways to win every battle. Preparation is important, but no amount of preplanning and picking your best troops will predict your next battle. My son and I often discuss strategy and technique, and the various analogies our game playing has with life. As a respected level 3 Master who reached those impressive heights with no cheat codes or spending of actual cash, I am worth listening to!

As an autistic person I frequently like to do things in the same way each time. It provides me with much needed predictability in this chaotic world I find myself in. It means I am wonderfully reliable, solid and consistent. It also means I can be metaphorically shooting my level one arrows when I’m fighting level six battles.

I still have my favourite old attacks and defenses now I’ve leveled up, but I have to ensure I adapt them to a more sophisticated opponent. If I keep on using my winning strategies from my early playing days now I’m in the Master league, I’ll look amateurish and rarely come out on top.

But I like my winning strategies from my early days. Life was simpler and enemies easier to predict. I want to keep using those winning moves. They served me well. They got me where I am today. Without them I would not be here now. But they don’t win me many battles anymore.

I’ve levelled up.

I need to learn new skills and different moves.

My son and I talk about how as autistic people this can feel tough. It’s like starting again from scratch each time we level up in life. Much harder than a computer game.

But with it comes new techniques, more resources, fancier strategies and greater opportunities.

We may be prone to keep on doing things the same way regardless. Sometimes I’m asked why I do things in such complicated ways, or why I always do things the way I do even if it’s not that effective.

Partly its the old message of “try harder” taken far too literally. Partly it is because it works – or rather it worked. But life sometimes moves on whilst I’m still doing the same old thing.

Sometimes I level up in life and don’t upgrade my skills in line with my progress. Mostly it is because it takes lots of conscious effort to work things out. There is always a logical reason for why we do things. Why change that? Doing things the same way is predictable and introduces a comforting, familiar pattern into an unpredictable and ever changing world.

We should be as proud of our life achievements as we are of our gaming ones. Finding that the old techniques no longer work could be a sign we’ve gone up a level. New opportunities are open to us and new resources are at our fingertips. It’s worth trying out some new moves.

Categories
Uncategorized

Why some days I am tired of being autistic…

I am fed up of being autistic today!


I have no energy for masking at the moment and know that this means I will either appear totally unstable or I’ll muck up everything I have worked so hard to create.


It makes me want to give up as there seems no point.

Situations remind me that no matter how hard I try, how well I mask, and how fantastic my skills are – I am still really crap at being a neurotypical person. But I’m not neurotypical so why does it matter?


Because autistic people are not valued as whole people. My skills can be appreciated but the rest is still measured in deficits.

People assume I want to be more normal, or I’ll somehow learn to fit in. I don’t. I won’t.


I want the whole of me to be appreciated.

I often find neurotypical people dishonest, vague, inconsistent and tricksy. I still love many of them though. I accept I find those aspects of their persona difficult and confusing. I may not even like how they do things sometimes. Perhaps they occasionally annoy me. But I still love them and wouldn’t dream of writing them off as lesser, or as a broken version of me.

We are all perfectly imperfect human beings.


That’s why I’m fed up of being autistic today. I’m tired and overwhelmed and have no fight left. I get more tired anyway because my brain does so much more processing. On top of that I have to put all that effort into fitting in so I’m allowed to have a go at normal stuff like work and friendships.

We are not on a level playing field.

My brain rarely rests. My body is usually alert to danger and ready to react.


Most people don’t realise this, and when I end up having to tell them so they’ll stop unintentionally hurting me, I feel humiliated and reminded of how the world is not designed for me.


That’s why I’m fed up of being autistic today.


So I’m taking it easy. I’m cuddling my dog. I’m taking care of myself and hoping tomorrow will feel better. 

Self-care is the only way. I have a capacity for joy that others may never achieve. I seek out those sounds that reset my soul. I notice the patterns the rain is making on the window and trace each tiny droplet until it has my full focus. I read those comments that remind me I am not alone. I move in ways that reminds me I am in here – I have a right to be alive.

I rest, I recharge. I don’t plan my next battle. I remind myself that this neurotypically biased world is not of my making. I look at the birds and the trees and I reflect on the words of Mary Oliver. I remember where I belong.

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5 minute read Autism

Sensory Joy and Healing

My dog has just come in and jumped up on the bed to see me – I can smell the weather on her. It feels exciting to be able to tell that autumn is approaching, just by smelling my dog!

We take the same walk every day, down the track and across the field to the little piece of woodland that looks out over the meadows to the distant river and castle. I’ve walked this route for 20 years – either with Blaze, or with my previous dogs. I never get bored of it though, and I take such delight in how it is always a different experience. A good, solid, natural, different experience each time; a difference that is meant to be. Rather than a man-made, enforced, upsetting of the natural order, type of different experience, that makes people think I’m typically autistic and “don’t like change”.

I notice the tiny insects; I hear the far away birds; I smell which animals have passed by. This means I have a whole world open to me that others miss – it is like a great, exciting secret between me and the Universe. It feels special and precious, and an honour. Sometimes my interest and curiosity are stimulated, and I observe and study and wonder at the natural world. Sometimes I just let my senses take it in and I don’t engage my thinking brain at all. The power of my senses gives me respite from the endless mental processing I have to do in order to function the rest of the time.

The physical power of music moves me. I can reset my dysregulated body with just one, single, repeated noise that has the power to rebalance me. I can listen to an orchestral piece and take in the enormity of it, like an overwhelming wall of sound – or I can follow the different instruments, interweaving and passing the melodies and harmonies back and for between them. No tune ever sounds the same twice. Music creates in me something that can’t be captured in words. I see musical chords in colour – and when I see these colours in nature, I hear them in my soul. 

My senses work differently to many people’s. I can feel pain and fear from sights and sounds that others find mundane or inconsequential. This can be overwhelming – and other people frequently don’t notice the extent of my suffering. But I can also become overwhelmed by the joy and beauty I discover through my senses. Sometimes I secretly smile inside because I know that I may look calm, bored, or even detached to a casual observer; but in my soul I am full of joy, I am experiencing psychedelic colours; orgasmic noise; and  fragrances that cleanse and purge my body and mind.

I can heal my painful and distressing sensory experiences.

I can listen to music; I can walk; I can smell lavender to calm me, or sandalwood to help me think.

I can crunch on pickled onion crisps and allow the astringent flavour to cut through my brain fog and overwhelm – and reconnect me to the world again.

I can listen to the same glissando and allow it to lift my mood, exactly in tune with the rising pitch. 

I can move my body so that I know it is me and I am in control and there is something predictable and safe that I have agency over. It makes me be “me” again – I fit back in to the world that so often overwhelms and alienates me.

I am privileged to have a sensory system that can bring me such joy and healing.

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Uncategorized

Zoom Fatigue

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

“Zoom Fatigue”

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

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

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

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

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

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

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

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

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

So what has this got to do with autism?

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

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

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

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

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

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

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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 a mum, I am doing my 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 my son entered his teenage years, I 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 as a registered social care manager, 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 Autistic people need far less sensory input than our non-autistic peers do, for our brain to register the sensation – this means that typical background noise, light, and smells may feel intensely overwhelming. Other Autistic people need far more sensory input – this sensory difference is part of being Autistic. 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 – it singles me out as different. I hesitate to say it makes me vulnerable because it is not my fault that there are dangerous people who choose to take advantage of other people. It is their responsibility not to harm people.

I am less bothered by my communication differences as a middle-aged woman, but as a teenager I had enough problems already without adding to them!

Have a think of some sexual terms for a moment – 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 avoid the scorn of my peers by not fitting 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!

NOTE: I was going to edit that last paragraph because my thinking has developed since writing it over a year ago. But I shall leave it as it is because it is good to see how you grow and develop as a person… On the surface it sounds OK… However – I no longer believe the narrative of Autistic masking being about “fitting in”. I have explored this in more recent blogs https://undercoverautism.org/2021/07/09/autistic-masking-lets-see-it-for-what-it-is/

Autistic people frequently mask or camouflage for the same reasons animals camouflage – to avoid predation. I act like my peers in order to not get predated. Or in order to take part. I don’t necessarily want to “fit in” – I want to take part as me – but without being harmed, abused and exploited.

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 avoid standing out as different from 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

I have had discussions with my 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” around 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 intense way compared to my muted 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 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. People experience touch differently. 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