Categories
5 minute read Autism autism diagnosis

Autistic traits: When self-care gets pathologised

In order to receive a clinical diagnosis of autism, a person must meet certain criteria. Aside from the damaging and negative language that describes our way of experiencing and responding to the world as deficits, these criteria don’t really tell us anything about “being” autistic. They are interpretations through the medical and neurotypical gaze of what autism looks like if you aren’t actually autistic yourself. (Not dissimilar to claiming the scientific “proof” that a coconut is in fact a mammal because it has brown hair and produces milk – it certainly meets some of the criteria for being a mammal!)

A clinician with absolutely no understanding of what it is like to be autistic could take these criteria and use them as a checklist against which to compare a person. We know Autistic people protect themselves by masking or camouflaging their autism (sometimes automatically and without choosing to), and we know that certain groups of people are less likely to receive a diagnosis of autism and are more likely to receive differential diagnoses that overshadow their autism. The road to correct diagnosis is a rocky one. But this blog is not about that. These are areas that desperately need further research and exploration, but I will stick to my theme of autistic traits indicating self-care rather than being the deficits so often described.

What do we mean by self-care?

A dictionary definition of self-care describes: “The practice of taking an active role in protecting one’s own well-being and happiness, in particular during periods of stress.”

In popular culture, self-care has become synonymous with bubble baths and herbal tea, but self-care can actually be an act of political warfare, or simply the stuff we need to do everyday to be at our best. Proactively regulating ourselves through increasing and decreasing sensory input can be part of our self-care.

For instance, we might wear noise-cancelling headphones in a shop, so we can reduce the sensory input from the speakers blaring out loud music and the background noise of extractor fans and chattering customers. This may make us better able to socially interact with the shop staff and complete our transaction less painfully.

What if we don’t have those noise-cancelling headphones to hand?

We might make a repetitive noise, repeat words out loud, or hum a note that blocks out all that background hubbub. This could have a number of effects, including:

a) our noise blocks out some of the background noise

b) it creates some predictability and therefore, feelings of safety in an otherwise stressful situation

c) it may provide regulating sensory input through the pleasant sensation of making the noise with our mouth

How might this look to an observer?

Observers might think various things about us making a repetitive noise – anything from a lack of understanding, “why if they don’t like noise are they making such a racket?!” to the more pathologising observation that the person is showing stereotyped and repetitive use of speech or hyper- or hypo-reactivity to sensory input. Both opinions offer up explanations from an “outsiders” point of view rather than understanding autism from the inside.

How many other traits of autism are in fact Autistic people practising self-care?

I have worked in the field of health and social care for 30 years and have met Autistic people who have severe learning disabilities and physical disabilities, Autistic people who are articulate in using speech, signing, actions and gestures, and other forms of communication. I have had Autistic colleagues and friends. All of whom meet those criteria for diagnosis set out in the DSM-5. Each Autistic person is unique, just as everyone else is unique – that is why we refer to the human race as neurodiverse – all minds are different.

My professional and personal experience tells me that Autistic people instinctively and intuitively do what we need “in protecting one’s own well-being and happiness, in particular during periods of stress.” And my goodness, it is stressful living as an Autistic person in the world. No wonder we have to find ways to protect our wellbeing.

What else could be going on?

I would love to hear your comments, reflections and thoughts. Here are a few of my own examples of how those “deficits” described in the diagnostic criteria may in fact be coping strategies and self-care activities used to help me exist in a world that is so frequently not set up for people like me:

  • My social challenges often come from being overwhelmed due to having too much sensory information to process. When I am better regulated and therefore not in a survival state of fight, flight or freeze I am more able to access what is referred to in polyvagal theory as my social engagement system. The things I need to do to be regulated may look different to those things non-autistic people do. This isn’t due to a deficit, but simply down to my experience of the world being different to theirs – seeing as my experiences are different, no wonder my responses look different too!
  • I use my body to self-regulate – how wonderful is that! When I have no equipment to hand I can still move my arms, bounce up and down, or make a favourite noise repeatedly. (referred to in DSM-5 as stereotyped use of movement)
  • My so-called special interests are not special in terms of topic – it is not my fault that other people seem to select from a somewhat restricted choice of interests. The abnormal intensity and focus following these interests (as described in the DSM-5) brings me a sense of calm, a sense of achievement in a world that frequently puts me down, and an opportunity to recharge. All great examples of self-care. In fact, some research of Porges described in one of his books about polyvagal theory and feeling safe, quotes: “a reduction in heart rate variability was a robust indicator of sustained attention and mental effort”
  • My sensory responses are only hypo- or hyper-responsive, or abnormal, if you are comparing them to your own and assuming yours are “normal”. In our neurodiverse human race where each of us has a wonderfully unique mind, how can we define normality anyway? When you understand that my sensory experiences are different to the majority of peoples, you may begin to understand that my responses are different too. Different, yes; AND proportional to my experience. A proportional response cannot surely also be a deficit?
  • My work as one of the directors of Autism Wellbeing CIC included co-authoring Sensory Trauma: Autism, sensory difference and the daily experience of fear where we generate a novel “Sensory Trauma” framework in which to (re)consider the lived experience of Autistic people. We explore the concept of affordances and how the same environment affords each of us a different sensory experience

Conclusion:

It is difficult to define autism. In my opinion, the DSM-5 criteria offers a highly restricted view of autism that is fixated on how autism is perceived by non-autistic people. It does not focus on the many strengths that autistic people have, including how we frequently incorporate self-care into our daily lives. I would like to reframe some of those deficits as instinctive ways Autistic people practice self-care.

But I do not believe that simply swapping a list of deficits in the diagnostic manual for a list of strengths, will improve things – the list of strengths is simply the other side of the same coin. But by flipping that coin over, we begin to consider autism from other angles – and that is important. I believe that autism research needs to move from an almost total focus on research topics concerning the biology, causes and treatment of autism, to topics that seek to understand the experience of “being” autistic. The times in my life that have been most positive for me, have come about through people accepting me, valuing me and seeking to better understand how it is to “be” me. Being able to quote diagnostic criteria or hypothesise over genetic factors that could have contributed to my autism have done nothing to improve things for me. I speak in more depth about autism research in another blog.

So, how can we reframe autistic deficits as self-care? Education and awareness raising are a good starting place and there are many fantastic individuals and organisations doing just that.

I made a personal change in how I use language. I stopped using the words hyper- and hypo- in relation to my sensory experiences after we wrote our Sensory Trauma position paper. Instead, I focus on the experience of “being” autistic. I choose to use phrases like “my tactile sense is heightened” or “my interoception, or awareness of body sensations like hunger and pain tend to be muted”. These expressions are finding their way into more mainstream usage with our National Autism Team here in Wales now referring to heightened and muted sensory experiences in their latest information. This is positive because it better helps people understand the experience of being Autistic. Autism is not a set of symptoms to be ticked off against a list.

For me, being autistic is about how my whole being – my body, sensory systems, brain, everything about me – interacts with the world. It is about the relationship I have with the world. A relationship that is affected by how I perceive the world through my different sensory, cognitive and social experiences. A relationship that is also affected by how the world perceives me. I cannot do much about being me, about being Autistic – and nor do I want to. But I can do something about how autism and Autistic people are perceived… we all can….

So lets do it!

Comments most definitely welcomed.

Categories
5 minute read Autism camouflaging masking social communication wellbeing

Snapshot: a typical day in the professional life of one Autistic woman…

The Covid-19 pandemic has led to a change in how we carry out our work for all of us – and for many of us that has meant working from home and reduced social contact.

My typical working week has gone from face-to-face meetings, visits, and home or office based work, to almost exclusively working from home with those face-to-face meetings replaced with video calls and most visits postponed. I wrote about zoom fatigue and the analogies it has with Autistic communication, last year.

Yesterday was different. Yesterday I stepped out into the “real” world and was required to drive to the nearest city and check out a potential location that may be suitable for delivering a service…..

And oh my goodness – did I really used to do this every day??!!!!!

Photo by David Marcu on Unsplash

The journey was great, I have always loved my time alone in the car listening to the radio or energising myself with a loud and uplifting tune. It gives me uninterrupted space to prepare my thoughts before appointments, and process them afterwards. In fact, this “thinking time” is something I miss in my working life.

Prior to leaving home I added the name and phone number of the person I was meeting to the notes app on the home screen of my phone. When I have lots to process, I can find it difficult to navigate my phone because I can’t find the right app or read numbers and letters easily. I was familiar with the area of the city I was visiting but used an online map to view the front of the building – this helps me hold an image in my mind of what I am looking for. Needing to look for something when I don’t know what it looks like is a non-starter for me. Potential business clients can help me (and lots of other people) by sending a photo of their building as part of any joining instructions – and if they send one of the person I’m meeting too, then I will be seriously impressed!

It was a frosty morning and I de-iced the car in plenty of time and dug out my warm wool coat from the back of my wardrobe. It has been some time since I wore it and it’s heavy weight and smart appearance was just what I needed to make me feel embodied, confident and business-like. Plus it has a pine cone in one pocket and a squidgy toy in the other, that I can hold and squish and feel without anyone noticing!

I was in the zone, so I got in the car and headed off.

I pulled up to the ticket machine at the multi-storey carpark entrance and wound down my window. I was offered a choice of pressing a button to talk to someone or pressing a big, flashing button with no instructions. I decided that the flashing button would be for the ticket, having reasoned that one doesn’t usually need to hold a conversation with another person in order to use a carpark. Correct! Pressing the button resulted in a ticket shooting out towards me and the barrier lifting up. I smiled to myself and noticed that already my racing mind was consciously thinking through everything – working out what was going on and why; and how I should respond. Those intuitive, “everybody knows how to do that…” activities that many people take for granted, often require considerable processing by myself and other Autistic people, and can result in me appearing slow, confused, stressed, overwhelmed or anxious.

Once parked up I needed to cross the road to the building I was visiting. The 4 lanes of traffic, including a bus lane, were in stark contrast to the country lane I live on, and I had not experienced such a volume, speed and noise of traffic in a long while. I stood at the kerbside, looking right then left, then right again but dared not cross. My brain could not process the speed of the vehicles; and the overwhelming noise meant my eyes couldn’t see properly and I could get no sense of how near or how fast the cars were by using my sense of vision or hearing. I gave my brain and body a few moments to settle and I instructed my feet how to move. Imagine a party game where you are instructing a blindfolded person around an obstacle course; “lift your left leg up a bit, no not that much, move it forward 30 cm, careful now” etc etc – that’s the level of instruction I need to give my body when coordinating movement in certain situations. I cautiously crossed the road once I was ready.

The building I had seen on google maps was right in front of me and I was pleased that I had looked up a photograph before leaving home. I even noticed the restaurant to one side and the shop to the other were exactly as pictured and I felt reassured by this tiny piece of familiarity and predictability. The doorway to the building had 3 panels of buttons for calling the various companies inside. Some had labels and some didn’t. There was a sign saying “Press doorbell for reception” and I looked all over the door from top to bottom but saw no bell and no switch that could be the bell. My eyes went back to the panels on the wall, and I tried to find one that had the name I was looking for amongst the moving mass of letters, numbers and sticky patches where labels had fallen off. I wondered if the sign requesting “Press doorbell…” was referring to one of these buttons on the wall? Perhaps what I think of as a doorbell – a single button on, or right next to a front door – means something different in an office environment? Maybe I could use the internet to search for “what is meant by office doorbell” or “how to find a doorbell amongst a load of buttons” – perhaps if I searched it up online and clicked “images”, I would get to see some examples of what this type of doorbell could look like that I could match to what was in front of me? But I decided against it. I needed to get my brain back on track so that I could attend my meeting.

I pulled out my phone and went to the note taking app on the front screen and called the phone number I had recorded there. No answer. I searched for the main company phone number, thinking that if the receptionist was going to meet me at 10.30am as planned, they would probably be at their reception desk and answer the phone….they didn’t.

I looked back at the panels of buttons and tried to work out the correct protocol for choosing which one to press. After much logical thought and a fair amount of trying to work out the potential impact of me pressing the “wrong” button, I decided to go for the panel that had numbers and one slightly larger button with a picture of a bell on it. I pressed it and waited. A voice came from the tiny speaker and I introduced myself, apologised for probably pressing the wrong button and enquired whether I could be directed to the company I was due to meet with.

All I could hear from the tiny speaker was a mumble of human noises against the backdrop of equally intense roaring traffic, seagulls, slamming doors, people shouting and talking, wind, car horns, bus engines revving, tyre noise against the road, brakes squealing, my breath, my heartbeat in my ears, the creak of windows being opened, the jangle of the door being opened on the shop next door, the delivery men unloading their van, the radio from the same van…..I picked out a few words from the mumble of human noise coming out of the speaker: “other door”, “Chinese”, “right”. I said thank you and walked away. I felt sad.

I considered going home and recalled how on one occasion I drove 150 miles to a meeting and had a similar experience, I left without even entering the building. I reflected on how difficult it is for me navigating a world that my brain processes as overwhelming. I ensured I regulated my senses because I recognised the overwhelm was spilling over from my senses and into my thoughts that were spiralling downwards into “why is it you are so rubbish”. I find it more effective to regulate my senses than challenge my thoughts at times like these. The issue is primarily one of sensory overload rather than anxiety. The anxiety stems from the sensory overload. I was grateful for my loss of smell and taste – the legacy of Covid-19 infection, as the diesel fumes, cigarette smoke and litter smells could have easily tipped me over into meltdown.

I put my hands in pockets and used my sensory items. I stepped back from the doorway and instructed my brain to pull away from tunnelling down into the finer detail and I got myself to look at the bigger picture. I searched for anything that could give me a clue. I walked down the side road, reminding myself that movement is regulating and good at times like this. I swung my arms a bit and made sure my fists weren’t clenched. I did not find the door. I went back to the main street and walked the other way and lo and behold there was a doorway with a sign on it for the company I was visiting.

At this point I stopped. I reminded myself that the people I was meeting did not need to be told about the online map showing the “wrong” door under the business entry for their company. They did not need to be told that I had tried phoning the receptionist just like the joining instructions detailed, but no-one answered. They certainly didn’t need to know about the traffic or the ticket machine buttons or any of the other ****ing buttons! They’d have no interest in my experience of crossing the road. If they asked me how my journey was – they would not be requesting any of this information – they wouldn’t actually be interested in my journey!

Now was the time to regulate myself and rehearse my “eye contact protocol”. Face coverings make this trickier as I tended to look at people’s mouths prior to masks becoming the norm. On video calls I make awesome eye contact because when you look at your laptop camera light it appears you are making eye contact with the person. You don’t even have to look at their face at all or even have it on your screen if you don’t want to!

So I gained entry into the lobby and BAM! the intensity of the lighting gave my brain too much information to process once again. Thankfully my already (fairly) regulated sensory processing system was able to cope and I prepared myself for meeting my host by repeating my mantra of “look directly at the person and say hello, then scan the environment whilst commenting on how nice it is, then make brief eye contact each time the person pauses”. I walked up the stairs, took a big breath through my nose not my mouth – mouth breathing in a mask feels extremely unpleasant, and in I went.

I am sharing this because it is my reality, and I recognised yesterday how far I have come in terms of understanding myself and managing all this. The world has got no easier, but I have become more able to meet my own needs. I no longer wonder why I am so rubbish at life – I’m brilliant at life – it’s just most people don’t have to go through the level of stuff I have to go through to get to a meeting, let alone to cope with the social, communication, sensory and other demands once inside.

This is a snapshot of me on a good day. To get a true picture of a good day I should add in the social anxiety about how I’ll come across in interactions and the anticipatory anxiety about what is going to happen. Plus the additional sensory input from perfume, aftershave and cleaning product smells; food that I need to eat or decline without causing offence; stairs and chairs to navigate without falling over; handshakes or physical contact; and remembering that I probably won’t recognise the signals in my body that tell me I need to drink or use the toilet until the last moment. I will be consciously repeating the protocols for dealing with small talk and making eye contact.

And if this is a good day – consider a bad day! Illness or stress make all the above far more challenging. No safety to regulate myself or seek clarity makes things worse. Masking autism for sustained periods is harmful, but is sadly necessary for me, in order to take part in the world as a professional person.

What will help?

There are some practical examples in this blog. Photos and clear information and joining instructions. Physical environments that are designed to be more accessible from a sensory processing perspective. Improved understanding of what it is like to be autistic –contact me via our website if you’d like to find out about bespoke training for your organisation or for yourself.

What helps me most is having a proactive approach to sensory regulation. I also use mindfulness – not as an exercise or technique that I plan into my day, but as a way of dealing with situations. I have learned to pause and notice and accept how I experience the world before reacting.

This short film is one of Aesop’s fables and I frequently reflect on what it means to me and how I treat myself in my thoughts and behaviour – perhaps you may take some positive meaning from it too? I recognised the need to follow the moral of the tale on my way home from the meeting yesterday – I was proud of myself for handling the run up to the meeting I described in this blog, plus everything that went on once inside – and I considered I could ‘quickly pop into the shops’ on my way home. Of course the additional demands this placed on my sensory processing system overloaded me instantly and I walked away considering I had done done enough brilliant stuff for one day and should give myself a break to recover and recuperate, and not push myself harder.

Categories
5 minute read Autism Coronavirus interoception Uncategorized

An Autistic experience of the impact of Covid-19 infection on sensory processing

Background:

I contracted Covid-19 for the first time in April 2020. This required a hospital visit which led to my interest in developing resources to support other Autistic people and their families as part of my professional work as a director of Autism Wellbeing CIC.

I received my two doses of the Covid vaccine during the summer of 2021 and was unfortunate to become infected with Covid-19 for a second time in October 2021. My symptoms of early illness did not present in the expected way.

My most recent Covid-19 infection initially resulted in the common symptom of complete loss of my sense of taste and smell. I have regained about 5% of my olfactory and gustatory processing ability six weeks on from infection.

My professional career has been within social care – developing and delivering services to people who are labelled as having complex needs. My own experience of Covid-19 enabled me to reflect upon some of the potential impacts this could have on other Autistic people, and in particular those who use non-verbal communication or are considered to have “challenging behaviour”.

Interoception – knowing I am ill:

Prior to both infections with Covid-19 I noticed a complete change in my demeanour. I did not feel ill. I did not feel hot or cold – although a thermometer indicated I had a fever. I experienced the sudden onset of severe depression-like symptoms. Fortunately, I am aware of how my interoceptive processing experiences manifest. Interoception is the sense we use to process internal body signals such as pain, hunger, or needing the toilet – and to notice our emotions and the changes they are creating in our bodies (racing heart could mean excitement or anger for instance).

The severity of the depression-like symptoms frequently overshadows my attempts to seek medical help for my physical illness. When I seek medical intervention at these times, my physical illness is typically overlooked, and my mental health is scrutinised – despite me articulately and accurately informing medics that I believe I am coming down with a physical illness. This overshadowing of my physical illness due to putting greater emphasis on the risk management or identification of my depression-like symptoms may prolong my illness as my physical health problems are not treated.  It invalidates my experiences and may even create barriers to me seeking support or communicating with medics.

When I consider people I have supported professionally, that are labelled as having “challenging behaviour”, I recognise occasions where perhaps they too may have experienced a sudden change in mood due to a physical illness. Within my work I have observed people exhibiting behaviours such as shouting; biting themselves or others; or running away. These behaviours were considered to be caused by the person trying to communicate that something was wrong and as practitioners we would consider whether this could be something external such as too much noise or the person not wanting an activity to end, for example; or something internal such as toothache or illness.

At times, “challenging behaviour” was interpreted by some practitioners as having an element of intent or wilfulness on the part of the Autistic person. It was sometimes considered that the person didn’t know how to communicate “properly” using speech or sign language or had poor social skills – and therefore chose to demonstrate their pain/distress/urge to leave, by “acting out” and using their behaviour in a planned or possibly even manipulative way to communicate with others.

Where no cause or trigger was obvious to the (usually non-autistic) observer, it was common for the observer to conclude that the person was over-reacting or hyper-responding in some way, and subsequently needed to learn more appropriate coping strategies. My own symptoms of sudden severe depression could look like emotional instability to an observer, and they may well consider me unable to cope with being ill. They may misconstrue that my mood symptoms are a response to my physical illness and not the way that illness manifests for me.

Sensory Processing:

Thank you to my colleague Kate for the drawings http://www.autismwellbeing.org.uk

Sensory processing is the process by which the nervous system receives, organises, and understands sensory information. All of us experience the world through our senses and our brains process this information.

Autistic people frequently process sensory information differently to non-autistic people. Our sense receptors (eyes, ears, taste buds and so on) may work perfectly well but there may be differences in the way our brain processes the sensory information.  This may include struggling to process too much sensory information or filter out unnecessary information; experiencing heightened, muted, or distorted sensory signals; delays in processing; or perception in one or more senses shutting down, resulting in an incomplete picture of what is happening within the body.

Each of us has a unique sensory profile. But sensory processing does not happen in isolation. Our sensory experiences change and can appear inconsistent to others who do not recognise the dynamic and context specific nature of sensory processing.

Our senses play an essential role in keeping us safe. For example, if food smells rancid, we know not to eat it, and if we feel unstable on a structure, we climb down from it. Sensory information tells us how to act in and adapt to the environment. Sensory processing also plays a role in regulation, activating us to evade a threat or calming us so that we feel safe.

Positive and negative aspects of my loss of taste and smell:

  • My overall amount of sensory processing was dramatically reduced. This had a calming and regulating effect upon me and reduced distress in some situations. e.g. the lack of diesel fumes and burger van smells made visits to my local town more bearable.
  • Food never tasted “off”. This reduced the anxiety I typically experience when food tastes different to usual. I used the best before date to identify whether something was safe to eat.
  • Food tasted of nothing – so texture became more intense. I realised that I could never eat broccoli without the “reward” of the taste of it to compensate for the texture!
  • I have practiced mindfulness for decades and found that eating mindfully was the best way to cope with my sudden loss of taste. I would put the food on my tongue and notice it without judgment. At first, the only food I could identify in my mouth was mango, due to the distinctive fizz. I am now aware of spices, bitterness, and the saltiness of marmite.
  • I recognised how I rely on my sense of smell when cooking. It lets me know when to check if the toast needs turning over under the grill and if food is getting close to being cooked. Without the ability to smell my food cooking, I had to focus on following safe cooking procedures and use a timer or else risk burning food.
  • Smell keeps you safe – I no longer felt disgust at cleaning up pet poo, even if I accidentally got some on me! I didn’t automatically recoil from mess or take extra care using bleach or filling the car with petrol as there was no aroma from it and it could have been water as far as I was concerned.
  • I can no longer smell the weather and therefore cannot easily identify whether I should wear a jumper or coat. My sense of smell is more effective than my awareness of temperature when processing the environment.
  • I use my sense of smell to recognise people. Their sudden lack of aroma made them as difficult to recognise as a radical new haircut or significant weight change would. This created a sense of unease within me.
  • I am concerned that I may smell bad, or my home may smell bad.
  • I am aware that I would not smell burning so have become extra vigilant about checking things are switched off at night. I recognise that this vigilance could become anxiety, perseveration, and obsession, so I have adopted a sensible routine to manage my safety concerns without escalating them.

Conclusions:

My sensory experiences following Covid-19 infection have reminded me how our senses work together and not individually.

The role of our senses in keeping us safe is significant. Risk taking may not always be due to recklessness, impulsivity, or lack of understanding of risks – it could occur due to sensory differences.

Autistic people may experience the world in a disorganised or chaotic way because our senses work so differently. My typical need for routine and structure reflects this. Since Covid-19 infection, I am aware that I am relying even more than usual on timers, reminders, and routines in order to compensate for my loss of certain senses. To an observer, Covid-19 may appear to have made me “more” Autistic. It hasn’t; but my “normal for me” world has changed, and I am needing to find security, certainty, and predictability in this new world of minimal smell and taste.

If I was supporting an Autistic person who was not able to articulate their experiences, and they had recently tested positive for Covid-19, I would consider how their sensory processing may have been affected. It would not surprise me if some Autistic people needed to increasingly rely on their other senses to make sense of the world if their sense of smell and taste reduced. They may touch things more to identify them using their tactile sense. They may stim more in order to get extra vestibular and proprioceptive input. I’d expect to see more tasting and smelling of items and people; and possibly increased frustration at not being able to recognise them by these methods.

I would also expect to see an increase in repetitive questioning by some Autistic people. I too have a felt a need to check and recheck information in order to seek out familiarity and predictability. I have found satisfaction in the predictable to-and-fro of scripted or familiar conversations and exchanges. Those reliable quotes from films and songs that stay the same each time you hear them! Similarly, I would not be surprised to see people stuck in a loop of thinking, or stimming, or behaving in a particular way – these tendencies are often exacerbated by change and unpredictability and can provide predictability and a self-soothing function.

Moving forwards, I have prepared myself for a potential return of my sense of taste and smell. I am aware that just like the effects of the various lockdowns ending; a sudden increase of sensory information may be too much for my brain to process and result in survival responses of fight, flight or freeze. I plan to stick with my mindful approach to noticing what my senses are picking up, with no judgment and a curiosity that will hopefully enable me to reflect and share my insights.

I encourage practitioners to consider sensory processing experiences when supporting Autistic people whose behaviour suddenly changes from what is usual for them, and perhaps check whether Covid-19 infection and symptoms related to loss of smell and taste may be the cause.

Categories
5 minute read Autism autism diagnosis Research

Autism research: Looking for answers in all the wrong places

In recent weeks, the largest ever UK autism research project, Spectrum 10k, was paused and an apology given to Autistic people, their families and charities that support them. The ubiquitous Simon Baron-Cohen, endorsed by several celebrities had declared how this research would investigate genetic and environmental factors that contribute to the wellbeing of autistic individuals and their families. Questionnaires and saliva DNA samples were to be used to learn how different genes are associated with autism and co-occurring health conditions.

Who wouldn’t support research that has the potential to reduce some of the health and wellbeing inequalities faced by Autistic people which, after all, are numerous and considerable?

Well…. A large proportion of the Autistic community don’t support the Spectrum 10K research in fact!  A Twitter poll #AskingAutistics  posed the question “What’s your view on Spectrum 10k?” The 582 respondents voted:

Fantastic 1%

Not Sure 17%

Awful 82%

Social media pages came alive with comments, questions, anger, fear, and objections about the way that so many autism research projects are undertaken. However, Autistic voices were repeatedly “shushed” and valid concerns about eugenics were mislabelled as conspiracy theories.  

Autism Research:

It may be helpful to understand a little about autism, about autism research, and about how autism is perceived.

Autism is a neurological variation, a naturally occurring expression of human neurodiversity. Autism is lifelong, and Autistic people can be of any gender or race and have a wide range of cognitive abilities. Autistic people almost always experience sensory information differently to non-autistic people. This means they process the world very differently to non-autistic people and subsequently have a different way of being in the world. I have spent 25 years working in the field of social care, and I am currently a director of Autism Wellbeing, a small non-profit organisation. I am undertaking PhD research about perceptions of autism, and my previous postgraduate research was about the effectiveness of mental health outcomes monitoring tools.

A review of autism research funding in the UK was carried out in 2016 by Autistica – the UK’s national autism research charity. The most common research areas were about the biology of autism; its causes; and autism treatments. Spending on autism research had trebled between 2013 and 2016.

Yet despite all this research, autistic people experience poor outcomes compared to their non-autistic peers in a range of life domains. Knowing about autism doesn’t necessarily improve outcomes for autistic people. When it comes to mental health, autistic people are more likely to die by suicide, are more likely to self-harm, and are more likely to experience mental illness than non-autistic people. Autistic people face barriers to seeking psychiatric treatment and as I discovered in my own experience as an Autistic person, misdiagnosis can often occur, and autism can be missed – with devastating effects.

Key findings of a report into UK autism research highlighted that academics perceive themselves to be engaged with the broader autism community, but this perception is not shared by other stakeholders, most notably autistic people and their families. Autistic people see the challenges of autism as societal and attitudinal and not about ‘curing autism’.

Autistica led a James Lind Alliance Priority Setting Partnership, that asked over 1,000 people for their top questions for autism research. These were then ranked in a final workshop attended by autistic people, parents, and professionals. The number one priority was about mental health and autism. Nowhere within the top ten was any mention of understanding the genetics or biology of autism.

The need for a different approach to autism research:

Very few studies have been completed about perceptions of autism, or attitudes towards autistic people. Research seems centred on fixing autistic people rather than improving society. Like many other Autistic people, the challenges I face are better explained by the social model of disability than the medical model. I do not feel that a better understanding of my genetics will reduce the barriers I face every day as an Autistic person.

My PhD research sits within the field of social science and my presentation recently won the WISERD PhD poster competition: “I feel like a square peg in a round hole: How is autism perceived and does it matter? – An exploratory case study into perceptions of autism within a Community Mental Health Team”.

In academic literature there is a disconnect between autism as a condition and being autistic as an experience. Autism is seen as a medical disorder and so attracts a disproportionate amount of research interest and funding – you could even say it is a research topic that keeps on giving. As an essentially narrative condition diagnosed on the subjective opinion of clinicians, autism is susceptible to ceaseless and sustained interpretation and reinterpretation. According to the prevailing science based, medical, cognitive interpretation of autism as involving a lack of theory of mind, autistic experience itself is a “black box” and hence not susceptible to investigation, let alone interpretation. Perhaps this relieves researchers of any felt obligation to interrogate either their own perceptions of autism/autistic experience or anybody else’s.

My PhD research question took a while to materialise. I considered a number of research topics, all related to autism; and time and time again, I kept coming back to the same concept. No matter how much we know “about” autism – Autistic people still experience poor outcomes. Perhaps the issue is not about something that is “wrong” with Autistic people, but something that is wrong with the way Autistic people are perceived and consequently treated. As my research question materialised, I realised that what was missing from the research was not “what is autism?” or “which gene causes autism?” but “how is autism perceived?” I believe that by exploring this area of research, outcomes for autistic people may be improved.

I believe it is time for researchers to collaborate with Autistic people and together take a look outside of the bodies and brains of Autistic people and into society, to see how improvements can be made.

Categories
2 minute read Autism

Autistic people – you are valuable as your whole Autistic self

Spectrum 10k research – there is a link at the end of this short blog. This blog is entirely my personal opinion.

I have needed time to process this research and what it means to me. My initial thoughts were complex – I felt conflicted and confused.

I totally stand by the researchers wanting to improve outcomes and wellbeing for autistic people.

I totally stand alongside every other parent who sees the struggles their autistic child faces every single day – and would give anything to improve that.

I don’t have an understanding of how DNA and uncovering which genes cause autism will improve autistic people’s lives. I look at other genetic conditions that we understand better; like Down’s Syndrome and compare the options…I am not filled with confidence. I would like to understand more.

I appreciate the fear of eugenics. The reality of whether genetic tests will be used to eliminate Autistic people – or simply the bits of Autism people don’t like – or even the co-occurring conditions only – is something we are unlikely to get a truthful and long-term answer to. The reality of eugenics may be cloudy – but the fear Autistic people are expressing, is tangible and totally real. Yet Autistic people’s concerns are being minimised, invalidated, and spoken over time and time again. Autistic people are being tone policed for their communication-style differences, not listened to, not taken seriously, nor respected.

My need for self-care has meant that I have chosen not to get involved in dissecting the methodology, ethics, and motivation of this research at the moment. But a quick background search on the institutions, funders and past research topics has rung alarm bells for me.

What concerns me most with the launch of this research is the way that it was done:

The lack of awareness of how Autistic people may feel about it.

The lack of compassion and empathy.

The lack of foresight.

The missed opportunities to collaborate meaningfully and take people with them.

This irresponsibility has been divisive and enhanced mistrust.

Some Autistic people are quite rightly distressed by this research, yet this does not seem to have been factored into the research – support was not set up alongside the research, to help manage the inevitable and very real concerns people would have. Yes, the researchers have answered questions – but have they even considered the emotional fall-out – and how that may be experienced by Autistic people (who process information, sensory input, including emotions – differently to non-autistic people). Do we feel cared for, nurtured, and looked out for by these researchers?

My initial thoughts were complex – my current thoughts have moved on but are equally complex. I see research with stated good intentions, that also reminds me that given the choice, some people would prefer it, or think it for the best if Autistic people, like me, did not exist. I am significantly deficient enough that they should be offered the choice about which parts of me are useful enough to be allowed and which bits to get rid of.

My genetics and neurology make me – they make me different to the majority, but I am me, and equally valid. I have a right to be here warts and all. Let’s fix society first.

Autistic people are more likely to experience mental health issues – and most will tell you that this is down to how we are treated and the barriers we face – not our inherent so-called deficiencies.

Many autistic people feel ashamed of our differences – we are more likely to experience abuse, be out of work, struggle with education. We frequently mask our autism – not because we want to fit in – but just so that we are allowed to take part. We may struggle with our identity and feel ashamed.

But it is not for us to be ashamed. Every single human has a right to be here. No one – I repeat – no one person has zero physical, mental, emotional, learning, social or other issues. I have struggled with my own sense of worth throughout my life – and I want to say to other Autistic people.

You are welcome as you are. You don’t need to feel ashamed.

Shame on those who say otherwise.

UK research has predominantly focused on the biology, causes, and treatment of autism. Key findings of a report into UK autism research highlighted that academics perceive themselves to be engaged with the broader autism community, but this perception is not shared by other stakeholders, most notably autistic people and their families. Autistic people see the challenges of autism as societal and attitudinal and not about ‘curing autism’.

CRAE, 2013. A future made together: shaping autism research in the UK, London: University of London.

Non-autistic allies – please take a moment to let the Autistic people you know – and those you don’t too, if you feel inclined – that they are valuable as their whole self. This is a message rarely heard by Autistic people.

Thank you for reading.

https://www.crowdfunder.co.uk/crowdfunding-to-help-autism-wellbeing-bounce-back

Categories
2 minute read Autism camouflaging identity masking

Autistic masking – let’s see it for what it is

Time and time again I read and hear how autistic people camouflage their autism so that they are more able to fit in. This makes a huge – and rather arrogant assumption – that we want to fit in – that we don’t want to be autistic.

I can only speak for myself but would like it on record that this is certainly not the case for me! The photo above is of a Speckled Wood butterfly, camouflaged against the woodland floor. This butterfly does not wish to “become” the woodland floor, nor does it want to stop being its authentic butterfly self. It has one reason for camouflaging and one reason only – to avoid predation.

Autistic people mask or camouflage their autism for many reasons; and frequently report the devastating impact of this on their mental health and wellbeing. Autistic masking is more than the reputation management and social niceties most people use every day. It is not simply about fitting in – often it is about avoiding bullying, discrimination, reduced opportunities or downright harm – predation even!

The framing of autistic camouflaging as a means to fit in, invalidates the lived experience of many autistic people. It fails to take responsibility for the discrimination and abuse directed towards autistic people. Until society accepts responsibility for the way autistic people are treated and changes this to become more positive, autistic people will need to protect themselves by masking their autism.

We may wish to take part – but this is not the same as “fitting in”. We may even be invited to join in – but frequently this is tokenistic. Inviting me to a place that I cannot enter because of my needs, but refusing to change it so I can enter or take part, is not inclusion.

I’d like to reframe the idea and commonly accepted use of language about autistic people camouflaging in order to “fit in” – and suggest we use the words to “take part” instead. It is a subtle change of language but the former suggests that those “others” want to become the same as the majority. Whereas “taking part” allows people to retain their identity whilst still belonging to the whole group.

Disabled people should not have to pretend we are not disabled. I would never expect my colleague who uses a wheelchair to put his chair to one side all day at work, because after all he can walk a few steps when he needs to. I would never tell him that I saw him walking a short distance the other day and he looked like he was doing it really well so why can’t he go without his wheelchair all the time? I certainly wouldn’t suggest that we all have to put up with things we don’t like and if we let him use a wheelchair, everyone will want one!

I will no longer be referring to autistic camouflaging or masking as a strategy used to better “fit in”. I shall tell it like it is. There are no excuses. Until society accommodates autistic people and stops the discrimination, mistreatment and abuse so that I can “be” autistic without needing to hide, I shall remind people that they play an important part in my need for masking; and they need to stop!

Categories
5 minute read Autism identity social communication

Authentically Autistic

This brief piece was prompted by a number of discussions I’ve had with people about autistic masking, being authentic and true to your autistic self.

You may like to check out my writing about autistic masking via the menu.

What makes me different?

I’m autistic, so experience the world differently to non-autistic people. My senses work differently – my personal range of sensory experiences is broader than most non-autistic peoples’. I experience some things more intensely (e.g. sound and smell) and others less intensely (e.g. body sensations and balance)

I have less need to form hierarchies than many of my peers – I still love to organise things and compartmentalise them, but we use different systems.

I think about things differently. I tend to consciously think through things that many others find intuitive – and intuitively know things that others have to think about!

So what is the problem?

I am in a minority. A seriously misunderstood minority. This means I often have to hide things like the extent of my sensory overload or my need for clarification.

My logical and literal mindedness puzzles people. My drive for clarity and need for honesty perplexes them.

And often it is NOT a problem. I have integrity, I cannot tolerate inequality. I stand up for what is right regardless of the personal consequences.

So, when is it a problem?

It becomes a problem when I remain dysregulated because I cannot do what I need to do to be in a state where I can learn and thrive. None of us can. But for me, the sensory aspects of the environment – and inside my body (noise, smells, lighting, my emotions) tend to effect me more because my sensory processing works differently.

Being dysregulated always makes thinking, communicating, and looking after myself and others needs, more difficult. That’s the same for all of us.

Humans are social animals. I don’t particularly enjoy socialising and I certainly find humans difficult to understand, but I recognise my social responsibilities. I may not want to hang out with other people for fun – but I choose to have unconditional positive regard for them….. and in fact, some of them are actually quite nice!

When I was younger I would be blunt, straight to the point and say exactly what I thought. I knew I was right. I certainly didn’t aim to be rude. In fact, I thought I was doing people a favour by leaving the bullshit out and getting straight to the point! I saw no need for small talk. I empathised by finding common ground that demonstrated my understanding of the other person’s situation and shared this with them. I used my incredible capacity for problem solving to offer advice, find solutions and share them with others. I wanted to be helpful. My heart was very definitely in the right place.

How was this perceived?

I sometimes came across as rude, self-centred and insensitive.

I am not.

Reflecting on this, it is important to consider that other people don’t necessarily operate in the same way as me. Those sensory and cognitive experiences I listed earlier may be different.

When I appreciate this, I realise how invalidating my responses to others may be. Lets take empathy as an example – a subject I have written about in my personal blogs and for Neuroclastic.

My natural, authentically autistic response to someone telling me something distressing about their own experience is to trawl through my memory for something comparable.

I don’t feel a lot when people share their experiences with me. Other autistic people may be somewhere else in this broad range of sensory experiences and physically feel other peoples pain to such an extent it hurts them too. If I responded with a “yeah well, whatever” to someone’s loss, and my autistic friend with the intense emotional sensations responded with a “omg, that is so awful – look I’m crying too” – neither of us would be much use to the person who was choosing to share their experience with us.

So I developed a technique that uses my very natural abilities of logic and reasoning. I would find something comparable from my own life and tell them about it so they realise that I truly understand.

Except they don’t!

Of course, these genuinely autistic responses can be seen as invalidating for others. And it’s not just issues around empathy where this happens.

If I was to tell someone that they looked dreadful in their new dress when they asked me for my honest opinion, they’d likely be hurt.

I hate lying and I find the games people play where I am meant to know the hidden meanings behind questions, frustrating and disappointing. I am lucky to live in a family where we can be open and honest and not dress things up in untruths.

How can I stay true to myself without hurting others?

As I have matured, I have found ways of remaining authentically me, whilst recognising that other people may be running on a different operating system to the one I’m running on. Expecting other people to appreciate my straight talking just because I’d like them to do that for me, is a non-starter.

I could simply say “I am autistic, I have every right to be autistic and this is how I do things” and expect them to accept this. But they won’t! People don’t. Maybe one day when people understand autism better they will accept our way of being a bit more. In the meantime, I do have people that I can be more blunt with, or skip the small talk. It’s great and is a very small step on a long journey to equality.

Or I could mask my differences and pretend that I am like them too. That I enjoy small talk, that I like to beat around the bush rather than get to the point. That I am happy to lie! But that sucks, and messes with my mental health. I sometimes need to mask my distress and dysregulation in order to feel safer and to blend in – and we all need to behave differently in different situations in order to act appropriately. But long term masking erodes your wellbeing and identity.

How do I find a balance?

The most important consideration goes back to my thoughts on how I treat others – and myself. Unconditional positive regard. Not being an asshole to others or to myself! Recognising our differences and accepting them. Using my desire to find common ground, but not in a way that invalidates other people’s experiences or takes from them and puts the focus on me instead. Not needing to change people, instead accepting them as they are.

I recognise that I am in a neurological minority. The majority of people tend to assume I am like them, because my differences are not usually visible upon first impressions. They should accept me for being me and for being autistic, but they usually don’t.

I want them to treat me in the way that I treat them.

When I am talking with someone that has a different way of being in the world to me, I try and understand how it is for them. Many autistic people do this – it is what makes us so great at masking and camouflaging our autism.

I still use my particular way of empathising to consider that the other person may get an unbearable sensation if I tell them honestly that their dress looks awful on them. Just like I sometimes get an unbearable sensation when I have to make small talk. I consider that they may find our surroundings drab and insignificant and easy to filter out – whereas I am annoyed by the background noise and distracted by their perfume. I hold on to the fact that we are operating on different systems. But I don’t necessarily say all this out loud.

I cannot get them to understand my way of being by forcing it upon them, just like they cannot get me to become less autistic by forcing me to enjoy soap operas and small talk! Nor can I bully them into changing their attitude by blaming or shaming them for simply being born different to me. Nor should they try and bully or “normalise” me or my autistic peers by making us keep still instead of stimming; or keep quiet instead of asking for the clarity we need.

Photo by Pixabay on Pexels.com

We need to do this together…

I would love non-autistic people to put the same amount of effort into understanding autistic people that autistic people often put into understanding them.

If I am going to accept that I need to be diplomatic when telling you about your dress, so that we maintain our positive relationship and you don’t feel hurt; then I’d like you to reduce the amount of effort you unknowingly make me use when trying to understand your true intentions and desires when we are chatting.

We both need to recognise each others intentions – and we may need to get to know each other and see beyond the stereotypes in order to do that.

Autistic people often communicate really well with other autistic people – we clearly don’t have deficits.

When you know me, you will value my honesty. Don’t write people off because they say or do things that seem odd to your way of thinking. If I accidentally upset you, remember that my intentions may not have been the same as your intentions in the same circumstances – and I’ll try and do that for you too.

I will not compromise my values, but I’m happy to adapt my communication style to accommodate you – in fact I do this most of the time already! Please do the same for autistic people.

Categories
Autism Coronavirus

Reflections on the pandemic from one autistic perspective…

I was prompted to write my first blog when I saw the frantic rush by shoppers to buy toilet roll. It triggered my own anxiety about what would happen if panic buying resulted in me not being able to buy the very specific brands of food that I must have.

The world did not run out of toilet roll, pasta, crunchy nut cornflakes or any other items and my anxieties about shortages were unfounded.

However – my distinct lack of anxiety about the potential impact of coronavirus on my health – I believed I would be at low risk due to being healthy and unsociable – was proven completely wrong.

I did become ill in the weeks following writing my original blog and needed to visit the hospital due to my continuous cough and breathing difficulties. This hospital visit was unlike any hospital visit I had made before. Some positives came from it and I was able to share my personal experience of sensory distress and confusion with the health board who were developing some fantastic resources for people who have a learning disability or are autistic. I’m glad I could use that traumatic experience to help others.

I worked as a key worker until late August and also in my role within Autism Wellbeing. We began producing information for people affected by autism. Tips for autistic people; their families; carers; and colleagues; covering everything from the language used in the pandemic; masks and PPE; coping with change; self-care; returning to work and school; and coping with the “New Normal”.

Our popular Covid-19 Resource pack has been widely shared and downloaded. You can get a free copy by following this link:

https://www.autismwellbeing.org.uk/product-page/autism-wellbeing-covid-19-support-pack

In fact, we were nominated for and awarded as “Local Lockdown Legends” for the work we are doing online and in our Facebook peer support groups for autistic adults and for parents/carers. (And by the way; many group members are in both groups).

At home we focused on our son. He was already home educated and I watched how parents of school educated kids tried to juggle working from home with providing a full time education. An impossible task. Collectively across society, we all did our best and realised there were many benefits to the computer screens and games consoles we often feel as parents are ‘taking over’ our children’s lives. The ability to chat online and out loud to friends, to play games together and stay in touch from the privacy of our own homes is invaluable and has been a life saver for many people. Here is a personal post I shared on Facebook as the first UK lockdown was announced. And a follow up 2 months later:

We are still learning about what is important to us. We have found that routines work well – and letting each family member set the routines that are most important to them is even better. I tend to bake a cake each weekend, we have pizza and a film on a Saturday – we have found that making the weekends special is important for us so we don’t feel lost in a world where every day feels like Sunday.

My initial fear – in fact it was more like a recurring bad dream, was of the pandemic ending abruptly and the streets being filled with people making lots of noise and desperate to hug me – imagining this filled me with terror. Of course, this is not how it has panned out.

I am so lucky, I live in a beautiful place. The natural world has been my escape, my place of solace, my predictably changing best friend throughout the pandemic. I have watched the bare branches of the beech and oak trees in my local woods fill with leaves until the woods became darker under the shady green canopy. And now, they are almost bare again under the steel-grey autumn sky. I have seen wood anemones make way for bluebell and the foxgloves. The Red kite I began observing on March 13th probably nested and raised chicks – but I’ll never know – my blog diary was never finished due to travel restrictions. I satisfied myself with writing about the history of Red kites in Wales instead. Here’s a link to my wildlife blog below. I also continued to write a nature column for my local newspaper as well as running my wildlife Facebook group.

Our family also faced challenges. Being unable to visit a parent who was rushed into hospital on two occasions during lockdown – not even being able to find out what was happening due to confidentiality rules, was upsetting and frustrating and left us feeling helpless. Not being able to meet as a family to lay another family member’s ashes to rest and pay our last respects was tough too. The uncertainties of the pandemic were topped off with the uncertainties of family life.

And on top of this my husband and I have post viral fatigue. Long Covid is what people are commonly calling it. I have had swollen joints, shingles, urine infections, breathing difficulties, and tiredness like you cannot believe. I have barely enough energy to keep myself feeling regulated and my sensory processing has swung from hearing every noise, finding daylight painful, becoming nauseated by any smell – to – not feeling a thing, not knowing where my bruises have come from or finding my hair is matted from where I have rocked unknowingly and continuously all night long in my sleep.

I have felt confused, scared and bewildered. I initially felt annoyed that people were clapping for the NHS – mainly because I like peace and quiet and the sound of my neighbours beating the hell out of saucepans every Thursday evening left my body activated and ready for flight, fright or freeze from the moment I got out of bed on a Thursday morning. I now wish that society was still coming together in this way – the sense of us all being “in it together” has diminished. People are calling other people out for perceived breaches of lockdown and are jumping on bandwagons they had no interest in before. I watched friends throw every ounce of their energy into campaigning about “Black Lives Matter” – my sentiments are with them all the way but it felt like this and other topics were being used as a distraction from the boredom, worry and upheaval of the pandemic; and I watched with shock, bewilderment and disappointment as I saw other friends demonstrate the most ill thought out and racist behaviour ever. I witnessed parts of society get fed up with staying in when the sun came out, so off they headed for the beaches and countryside. It felt like all the world was out of control all around me. It looked to me as if everyone was on the verge of total emotional overwhelm – people I view as level headed were sharing memes and fake news without checking for facts first – pressing “Like” or “Share” because it gave them a shot of something that momentarily eased whatever negative feelings the pandemic created in their bodies.

And I kept baking my cakes on a weekend, kept working, kept walking every day I could. Kept up my self-care and kept going and going and going. My ability to keep doing the same thing again and again in the same way has kept me focused and strong.

And some days I felt peace and at one with the world – I loved the simplicity, the lack of socialising, the space – and the quiet. And on other days I felt stifled, trapped and unable to find any peace – either internally or outside my body. Our one living room felt way too small for a family and I would have given anything for the endless questions about when can my son see his friends again – or the rants about what the government were or weren’t doing – or the continual noise and movement that inevitably comes with living as part of any family – to just stop!

I wondered whether autistic people would fare better than others because we are so skilled at having to cope with uncertainties. We rely on routines, structures, and rules, and are famous for preferring our own company. I wrote about how there was no better time to be an autistic person. In fact, I have a secret to share… Although my autism was never hidden, I had never articulated to the wider world what it was like for me. So I decided to write a blog because I knew I was very unwell – I wondered if I would die from coronavirus and I rushed this out so at least people would know what life was like for me if I did die. I also wrote an article for the local paper about finding peace in nature and calling for humankind to be compassionate towards each other.

Did I do better than anyone else because I’m autistic? Well, firstly it’s not a competition. We all need to play to our strengths in order to thrive in life. My strengths are by their nature autistic. Unfortunately, the medical model of autism describes them in terms of deficits and what is “wrong” with me. My need for consistency and routine, and my unique way of experiencing the world through my different sensory processing system are viewed as symptoms of a disorder. Does being autistic make the pandemic easier to cope with for me? Yes. Would it make it easier to cope with for you? Probably not. We each need to utilise the coping strategies that work best for us. But of course, there is scope to learn from each other, regardless of our neurologies…

Many of us have found we have needed to work from home during the pandemic – and many employers have embraced this and seen the benefits. Some disabled people have been requesting to work from home for years, whether due to accessibility issues that affect mobility; or accessibility issues around transport, communication and the sensory aspects of workplaces. Lets hope that those people who work better this way can continue working from home. I have been home based for many years and was able to give tips to other working people about planning your day; taking breaks; effective communication; and work/home balance.

No discussion about the workplace would be complete without mentioning video calls. I went from being someone who could not even look at a photograph of herself; to being an active participant (if a bit overwhelmed and reluctant at times!) of conference calls; to being featured in films and training videos. It was a Herculean achievement, reached by taking many painful, brave and challenging small steps. The world of conference calls highlighted many of the challenges autistic people face with communication. Not just the act of being on screen and talking to people – that can feel bad enough! But the technological issues that occur during a video call – these feel familiar to me in my face-to-face interactions:

  • The lag between speech and mouth movements that makes verbal and non-verbal communication slightly out of synch – that’s how my brain processes communication ordinarily. I put a huge amount of effort into matching up facial expressions, body language and speech so that it makes sense to me.
  • The background noises are amplified on a video call – the scrape of chairs, tapping of keyboard keys, coughs, hiccups and slurping tea – these all sound at the same volume and intensity. Welcome to my usual world of sensory processing where nothing gets filtered!
  • The lack of spatial clues means you can’t tell where those “mmmm’s”, “uh-huh’s” and other meta-communication is coming from. You may miss the shaking head of disagreement from the person off-camera because your focus is on the person who is speaking. There is soooo much to take in. No wonder we get zoom fatigue!

Did I take up any new hobbies? No

Did I get fit? No….Sorry Joe Wicks…

Did I learn anything about myself, my family and the wider world? Yes, loads.

Do I feel hopeful?

I have fluctuated between feeling hopeful and feeling despair. I viewed the initial “togertherness” positively: the sense of communities supporting each other, clapping together, helping each other out. I remember a video doing the rounds on social media back in the early summer that spread a message of hope and how we’d learn and become a better society because of the pandemic. I cynically thought to myself, that we probably wouldn’t.

I watched the way the media used language, imagery, metaphors and colours to emphasise whatever mood they wanted to portray. I made accurate predictions of the government’s next moves – I’m no conspiracy theorist, or political expert – just an accomplished spotter of patterns!

I have seen people ride by on a rollercoaster of emotions, I have occasionally hopped on and off myself! A “coronacoaster” as one meme describes it.

Coming out of a 17 day Welsh lockdown today, having been on tenterhooks over the US election, fatigued by post viral illness and worried about my family and what the future holds; I could easily feel hopeless – I do feel hopeless. And that’s OK. This pandemic really sucks sometimes!

But when I reflect and look back at the positives that have only happened because I have been alive on this planet in this exact period of time, then yes, I do have hope…

  • I have gained friends
  • I made a flute out of a carrot
  • I have started a PhD
  • I have swung on rope swings, gone wild swimming in rivers and ridden my motorbike
  • I am working with colleagues who value me
  • I have overcome challenges I thought I’d never face
  • Covid didn’t kill me
  • I have written…and written… Autism blogs, wildlife blogs, nature columns, information sheets, contributions to a paper on Sensory Trauma, contributions to ‘Neuroclastic’, Facebook groups and pages, and scene 1 of a play- my first ever work of fiction.
  • And on one occasion I chased a pig and got over 30,000 social media views for my efforts!

Categories
Autism education Uncategorized Video Vlog

Autism and School

You can watch me in my first ever vlog by viewing the YouTube link below, or if you’d prefer a traditional written blog, you can read that instead.

I have decided to go to University. Now then, if Miss Hooper, my very first teacher in primary school heard that news, she might be quite shocked that I am saying this at the ripe old age of 47.

 On more than one occasion over the past few decades,  I have affectionately cursed Miss Hooper for setting such high expectations for me. Within days of me starting school she informed my parents that I was potential Oxbridge material. A child with my natural academic ability was clearly cut out for one of the top Universities in the land.

It didn’t happen. I didn’t even get close…

So what went wrong?

Well…

For a long time I assumed “I” went wrong; my teachers assumed I went wrong; my parents assumed I went wrong. But I didn’t go wrong. The education system simply did not respond to my needs. And this was because of my undiagnosed autism.

Mind you, I can’t think of a single child at school who was diagnosed with autism. This was the 1970’s and no one had yet described the spectrum of autism nor the triad of impairments. And we were still years away from Asperger syndrome being used as a diagnosis.

Right, let’s get back to my school days.

So it’s the New Year of 1978 -I had been to playschool for a year or so and was quite looking forward to joining the big school.

I was already able to read and write – and I already had a bit of a reputation, as I was not backward in informing my playschool leaders when they misspelt my surname. And I was most offended – and I told them – when their response was that a 3 year old shouldn’t be able to spell their surname anyway! You can probably guess how well I was going to fit in with the education system from this moment on.

So here I was about to go to school. I was looking forward to it. I wanted to do some proper work! Miss Hooper, my class teacher, seemed very old to me – I suppose she was almost at retirement age back then – in fact she died earlier this year at the grand old age of 100.

She could be described as an old-fashioned sort of teacher. Strict; slightly distant; very academic and serious. Not at all like the playschool leaders who would happily get involved hands on with the children and cuddle them and play with them and fuss over them.

It was bloody brilliant!

Miss Hooper gave me extra reading lessons and I was allowed to choose books from the junior children’s library, even though I had only just started in the infants. I was even allowed to stay in at lunchtime and do more reading instead of joining the other children outside to play. I very much fitted in with this school system and I was happy to be spending my time there, stretching my brain.

I’d like to point out at this point that autism is a spectrum. That doesn’t mean some people are mildly autistic and some are severely autistic. And it doesn’t have anything to do with academic ability either. Autism is a spectrum because whilst all autistic people share similar ways of processing the world; this manifests in different ways. I was academically bright – yet took a very long time to learn how to tie my shoelaces. I could talk with ease about one of my interests – maths or animals for instance. But I struggled to know what to say to make friends.

For me, it is these contradictions that are the very essence of my autism. The huge expectation from others – and myself – that because I can do this thing very well, I should be able to most other things very well too. I remember a phrase used repeatedly about me as a child. “How can someone who is so clever, be so stupid?” This very negative phrase has taken a lot of shifting from my internal dialogue, probably because I felt it summed me up so perfectly.

I got hold of some old pictures I drew in my first school year and some of my classwork too. I can remember the sheer joy of finishing my work and asking for some extra sums to keep me busy while I waited for the rest of the class to catch up. I remember exactly how I used to think aged 4 when I drew these pictures – I was exactly the same then as I am now.  So it’s nice to look back and remember that I was actually quite a sweet, fairly ordinary little girl too.

Have a look at my vlog (about 4 and a half minutes in) if you’d like to see more of them.

I am begining to see how I was starting to look to the other children. I mean – a 4 year old who asked for extra maths – for fun! Yep, my differences were beginning to show…  

But no one suspected that this socially awkward, pedantic child with a massive obsession about numbers and animals was autistic. I was lucky in a way because my academic brightness and extremely polite “good” behaviour, masked some of my difficulties. My quirks – as they were probably perceived – were tolerated because I was bright and well behaved.

I was told I was clever – I knew I was clever. I was probably a total pain in the backside because my need for accuracy, order and consistency, combined with my academic ability meant that I would correct people whenever I felt it was needed and not really take into consideration anyone else’s feelings or opinions. However, I was – and still am, a polite person, and very considerate. I would happily correct someone because – goodness me, that’s what ‘I’ would want them to do for me. Surely, they must want me to tell them what they got wrong? And I’d tell them with no malice; no unkindness – just total honesty, straight to the point logic and reason – you know what? – they’d probably find me super helpful. Wouldn’t they?

 Of course – this different way of experiencing empathy and interacting with others was not the typical way of my peers.

Let’s skip on a few years to secondary school.

Secondary school was bigger. More people, separate lessons, different classrooms, and a timetable to negotiate.

Things started relatively ok.

But over the course of my 5 years at secondary school, things deteriorated. I’ll share some genuine extracts from my school reports…

Year 1: This is from the Head of Year: “Emma has shown herself to be a pupil of the highest quality… She is enthusiastic and often terribly energetic and excitable about what she is doing… She is clear thinking and responsible and I am sure has much to offer the school in the future… The staff reports speak for themselves. An excellent report”

Yep, there I was. A bright future ahead of me. Lets see what the individual teachers had to say..

Maths – there should be no problem there… Grade A for effort and A for achievement – great, now what did my teacher say? OK, here goes: ”Emma works extremely well in class. She is a little dogmatic in her approach to mathematics, but at least discusses with me any disagreements she has over method!”

Yeah, well. I suppose that sounds a bit like me!

The rest of that first year report was also good. A’s for everything apart from P.E.

That wasn’t a surpirse, I have the coordination of a blancmange! I can remember from primary school how my parents were told that there hadn’t been a single P.E lesson where I didn’t injure myself in some way.

Anyway, lets look at my second year at secondary school…A good performance in all subjects according to my Head of Year. Perhaps a little too talkative.

Yep – drama teacher here says “very talkative but pleasant with it”.

Mmmm. Spanish: “Emma is a lively character, perhaps a little too lively at times for her own good”

French… “Emma’s concentration in class is apt to lapse rather too much”

OK…

Science… “Emma does not seem to work to her full ability. She can occasionally behave stupidly”

Actually Mr Hughes, I don’t think you are meant to use the word “stupid” when referring to your pupils.

History next…”Disappointing…lacks depth, Emma must be wary of developing a superficial approach”

Right, so not quite the “pupil of the highest quality” from Year 1. And whilst I was still mostly getting A’s for achievement – my grades for effort were now tending to be B’s.

But, Oh how I wish they knew the sheer amount of effort I had to put in just sitting on that crowded, noisy bus whilst teenagers screeched and sprayed copious amounts of Impulse body spray around; so that I could spend a day in brightly lit classrooms, full of people who were just not like me.

By the third year I needed to be choosing my options for GCSE’s – the new exam that was replacing O levels. I was not happy about GCSE’s. There was coursework required and homework to complete – I liked tests and exams – coursework meant sustained efforts and the ability to demonstrate you really understood something and could apply it across a range of contexts. And I preferred relying on my good memory, and winging it in the exam!

“Emma must learn to pay attention” – that was from my English teacher – and this is one of my favourite quotes ever – “Her ability cannot be questioned; her attitude can!”

And there you have it – my shift from being a bright, lively engaged member of the class, to a child who is perceived as having an attitude problem.

“There is room for improvement” according to the French teacher – I still got an A though, so where I needed to improve, I’m not sure.

Around that time I also remember frequently being told that I wasn’t listening. And I would of course reply that I was and repeat what had been said word for word.

And then… wait for it, I’d be told “Well look like you’re listening then”

So I developed my “listening pose” based on Rodin’s The thinker ….. It also felt nice to do and is still a favourite soothing strategy when I need to calm myself in front of other people without drawing too much attention to it.

“Easily distracted” in Spanish

“Needs to do a great deal to redeem herself” … that’s physics

Here’s a nice one… History “Emma is a highly intelligent and articulate girl with a waspish sense of humour”

Thank you for that, I only didn’t take history as a GCSE option because I didn’t like the other history teacher – he was sexist – and I told him. He said that the girls should help their mum’s with cooking and cleaning in the holidays.

“Fussy and disorganised” …that’s the Art teacher

So I entered the last 2 years of compulsory education. I had chosen my options, which were as science based as possible. I wanted to study medicine and unfortunately I had told my parents and teachers this aged about 7, so everyone was counting on this actually happening. That initial pressure of being Oxbridge material had stuck with me.

Inside, I knew I was different. I pretended to like pop stars and boys like the other girls did, but I didn’t really. I pretended to like make-up but actually found it felt extremely unpleasant to wear. I liked animals and nature and thinking about things and being on my own.  And I was the most gullible, easiest to tease, bully or pick on child ever. And I repeatedly kept doing whatever it was that made people pick on me. And I had no idea what it was. No amount of masking my undiagnosed autism, ever really hid it. I knew I was different. Everyone else knew I was different.

But overall, academically I was doing ok- ish. My fourth year report refers to me “having ability but not quite attaining what I am capable of”

I was told I needed to be more disciplined and determined – to get things done on time – to be more consistent.

My math’s teacher was worried about my attitude; yep, so was my French teacher; my physics teacher criticised my ‘forgetfulness’; my chemistry teacher said I needed to apply myself more. The careers teacher was concerned about me being “nervous over using the telephone”

But there were some positives too.. I went to a religious school so R.E lessons were compulsory.  I opted for the GCSE called ‘Religion and Life’. It was interesting and there were plenty of philosophical discussions to be had. Mr Paul, my R.E teacher is firmly stuck in my memory. I started secondary school in 1984 – and he suggested we read the George Orwell book of the same name. he welcomed my questioning mind. Here’s what he said about me….

“Emma has so many ideas that the effect can be torrential! I am considering issuing the rest of the group with umbrellas so they can survive the deluge! Actually, Emma is invaluable as a catalyst of ideas and her learning and grasp of religious ideas is very promising.”

That was a nice thing to say about me. But I bet you can imagine how I was starting to feel confused, troubled and frightened. I was still mostly getting A grades for my achievements, but I didn’t look like I was putting enough effort in. I was distractable and inconsistent and forgetful. Some teachers thought I was great. Others thought I had an attitude problem and found me exasperating.

The background to this was of course my autism – my very different sensory processing system that found some noises so painful, it was even agreed by the school that I didn’t have to go in the woodwork or metalwork classrooms. But the impact of my autism was not just academic – yes I was dogmatic, I was distractable and so on. But I was also bullied mercilessly. I found fitting in and making friends painfully difficult. I also had some horrific life events to cope with that were secret and almost unbearably painful to cope with. My life outside of lessons was horrendous – and none of those teachers knew.

In my fifth, and final year, the teachers seemed more positive about me. Probably because I did well in my mock GCSE’s. My report comments are mixed, but so so many of them are describing a very typical autistic girl.

Listen to this positive one: “Emma has an occasional tendency to gallop off into the sunset in the pursuit of an idea that attracts her, but which is not strictly relevant. But I suspect that is just the way she is. A super student and a lovely person”

My confidence in my cleverness was diminishing and my physics teacher describes how I underestimated my own ability.

My chemistry teacher refers to me being disorganised and “not averse to stopping him mid-flow to clear up any point that has not been made clear” – I’m not sure if that was meant as a positive or a negative. Either way, it’s pretty autistic.

I was feeling relief I think that school would soon finish, and I could leave. I planned to take A levels in a College of Further Education  – a much better setting for me. The teachers tended to drop the dark sarcasm in the classroom once you got to call them by their first names, instead of Sir or Miss.

So I sat my GCSE’s. I did well. I went off to take science A-levels – but as the college staff reported, I did not cope well with the transition. I tried A levels a second time. But no. Education just wasn’t working for me. If you have a read of my blog about how I learn – and the difficulties this causes my teachers, then you’ll understand more about how the combination of sensory, social and teaching factors just don’t work for me at all.

How I learn….and the difficulties this causes.

So we skip forwards 30 years and I’m off to do my PhD. I’ll be a doctor – but not the medical surgeon I had planned to be. My PhD is about neurodiversity and employment.

And this is because I have been successful in my career. Being a catalyst of ideas is useful. Being nervous of using the telephone is still problematic, but where my skills are valued, colleagues are often – but not always, happy to make accommodations. My differences can be an asset. I have an appreciation of the world being a far more complex place than I did as a child. I still call people out when I need to – I’d still tell that history teacher he was being sexist. But I’d be more diplomatic with my maths teacher, and I certainly wouldn’t tell him he was “wrong” just because his way of working out a maths problem was different to mine.

I got hold of these old reports when I went to see my family in early September. I didn’t even know they were still in existence. I wondered if my autism would be apparent when I read them. Judge for yourself.

I struggled my way through school, without knowing why. Surely a bright, talkative girl would be successful? But she wasn’t. Well not in the way school expected anyway.

Usually in life, I have been most successful when I have played to my strengths, and other people have played to my strengths.

I’d like teachers to think about the bigger picture when they are writing or thinking about pupil’s “stupid behaviour” or “attitude problems”. Neurodiversity could be behind it. Especially when you view the bigger picture and see the pupil’s strengths as well as the issues. These characteristics often create a picture of someone who experiences the world differently – and that can bring innovation as well as challenges.

Teachers also don’t always know what goes on outside of the classroom either, and the impact of these things on a child too.

School age Emma was academically bright, full of ideas, disorganised, forgetful, distracted. She had a tendency to go off on a tangent, to question and to say what she thought. She was – and still has, nervousness around using the telephone. Still accident prone when it comes to doing P.E. Still can’t even be in the room with certain noises, smells or lighting. At times still socially awkward.

Unfortunately, school put me off learning. Put me off making friends. And put me off myself, if truth be known.

My son is home educated. He had a fantastic primary school experience but once we saw that some secondary school teachers still used the same old sarcasm, still viewed difficulties with writing, copying from the blackboard or having the correct equipment at the correct time as “behaviour issues”, I decided to educate him myself. And we are both thriving because of it.

Categories
Autism interoception wellbeing

Saying “ouch!” in all the wrong places …

Ouch!

I do feel things you know! I may have hiked several miles along the Welsh coast path – and back again – to see if I could “walk off” my dislocated knee. I may have been “incredibly strong and brave” during labour and breathed through my contractions without a cry passing my lips. And I even spent a week away at a children’s camp aged 11, with a broken arm that everyone thought was “nothing to worry about” because whilst I told them I was injured, no one took me seriously because I just wasn’t saying ouch in the right places. I was still hurting though.

Conversely, I can also stress about sensations on my skin that doctors can find no evidence for; and feel so unwell before a thunderstorm I want to curl up in a ball and hide away. More than once I have visited the doctor with physical symptoms only to be told there is nothing wrong with me.

Just because I don’t “feel” pain in a conventional way, doesn’t mean I am braver, weaker, stronger, or more sensitive than other people. When I am unwell or injured my symptoms may not even be experienced as pain – frequently my mood and emotions let me know that something physical is going on. However, when I am distressed or emotional, these feelings may be experienced as physical pain – or more commonly as sensory processing disturbances. Changes to my vision or vestibular processing for instance.

I can’t explain how this works but I accept it in exactly the way I accept my other sensory processing differences. Synaesthesia is widely documented and believed as a variation on human experience. I experience some music and colours in this way myself. I put my unusual experiences of pain, illness and emotions down to a similar phenomena.

I have learned to trust my own experience of my body rather than that of medics and interpret my symptoms accordingly. Unfortunately I am rarely believed. I therefore have a dilemma: do I continue to say ouch in the wrong places – and be viewed as a hypochondriac and dismissed as having nothing wrong. Or do I tell the truth and describe my symptoms honestly and inform the doctor of what the symptoms are most likely indicating – leaving myself open to being viewed as delusional. This is a very likely outcome of me sharing my symptoms truthfully with doctors, because I have a psychiatric history. Or do I lie and try to use the words and terms they’d understand – for example, I could pretend that I was feeling the pain of my injury far more severely than I was. This isn’t an option for me – I can’t justify lying in this situation.

Or do I avoid seeking treatment for any physical or mental health issues I may be having? Do I join the many other autistic people who have poor health outcomes, just because my atypical experiences are not believed – despite me clearly being lucid, articulate and reasonable. Goodness knows how people who are less confident and articulate cope!

Caring for someone else who says ouch in the wrong places…

For a long time I assumed I was either totally unfeeling – or totally oversensitive. I also believed a lot of lies I had told myself or believed from others. Sometimes I assumed I was somehow stronger and better than other people who appeared so weak and lacking in emotional strength to me – those people who got sentimental about things, or lost their tempers, or got flustered in a crisis. At other times I felt weak and pathetic, and the worse human being on the planet because I couldn’t cope with the little things that didn’t bother other people, or I’d know something was wrong with me, but no one would believe me. Perhaps I was mentally ill; perhaps so damaged I was beyond repair? A fraud; an alien; evil. I had a perfectly logical reasoning for each of these potential explanations based on comparing myself to others and believing the lies I told myself or others told me. Of course, none of these were true.

Then I had a child. And there was suddenly another human who was perfect, untainted by the world, definitely not an alien or evil – but very much like me. Once I had spent a very long time coming to the conclusion that I hadn’t damaged him in some way, we sought clinical input on his differences – those differences that were very similar to my differences. And we learned amongst other things that he is autistic.

It didn’t take long to realise that I am autistic too.

Our son has better health outcomes because we understand that not everybody experiences things in the same way. All of us process sensory information in individual ways. Whilst there is a typical range of sensory experiences, most people have experienced unusual sensory processing at some point and can relate to the experiences that many autistic people have everyday. Most of us will relate to how our hearing becomes acutely sensitive when we are scared and even the quietest noise can startle us with how loud it sounds; or the feeling of “sea legs” when we have come ashore after being on a boat and our brain is telling our limbs that everything is still moving.

Autistic people may experience these extreme types of sensory processing experience as our “normal”. We may process the world in a muted way where sounds, lights and smells barely register with us – or we may experience sounds, lights and smells as intense or even painful sensations. Most of us experience a mixture of these variations – and they may fluctuate depending on what else is going on; our environment, mood and general wellbeing etc.

Knowing how we feel physically and emotionally is determined by our sensory processing system. The sense that really plays a part in knowing when to say “ouch” is interoception. Our interoceptive processing system enables us to recognise body signals like being hungry, tired, needing the toilet, pain and emotions. Just like the other senses it can work within a fairly typical range – or it can be muted or intense – and remember this can vary for each of us on a day to day basis too. Have you have ever not noticed you need the loo until the last moment because you have been so engrossed in what you are doing you haven’t recognised the signal in your body? Or known something was up but you couldn’t work out what? Or realised you were tired or hungry. That’s interoception.

Learning about interoception has taught me an important life lesson. Compassion. And also self-compassion. I am no better or stronger than anyone else just because I don’t feel pain from injuries unless they are very serious. Nor am I a pathetic loser because the sensation created in my body by needing to wait for something is so intense it makes me feel edgy, uncomfortable and completely unable to shift my focus onto anything else. I may not feel love for other people as a sensation, but I absolutely love them with all my (very logical!) heart.

And just because other people may not take my experiences seriously doesn’t mean I should disregard those experiences.

All human beings have basic needs – warmth, safety, food, love and so on. When we look after other people we need to meet these needs, regardless of whether the person we are caring for is aware of the need. A baby cries so we check out whether they need feeding, changing or a cuddle. If our child doesn’t notice they need a drink, we still give them one – to do otherwise would be neglectful. Our child may not notice they have bruised themselves falling over – but we still check them out for injuries and treat them with care. A child that may not be feeling an emotion we might call “love” or who may not turn to us for comfort when they are upset, still needs to be shown love and comfort – even if this is on their terms rather than our own. Perhaps this isn’t through cuddles and praise, maybe it’s through listening to them talk about their favourite interest or letting them press their feet into your tummy while they play on their own with a toy – different sensory processing systems require different responses.

Having a child made me appreciate the disservice I was doing myself by viewing my experience of interoception with a judgmental attitude. It’s not surprising – emotions are what makes humans most human. If I asked you to describe a robot, it would probably look human and have all the various sense organs that humans have and do very humanlike things, but lack emotions. My unusual auditory experiences for example, are much more accepted than my unusual interoceptive experiences. Ultrasensitive hearing, the ability to smell someone in the next room, or instantly spot a typing error on a printed page are unlikely to result in judgmental labels such as ‘evil’ or ’emotionally unstable’. A lack of typical emotions seems to equate to an almost robot-like lack of being human. And in my experience it is easier for people to treat others badly if they don’t view them as human.

I need to treat myself with the same compassion that I treat other people. Extend my willingness to meet other people’s needs in unconventional ways with meeting my own needs in unconventional ways when I need to.

Soothing my own “ouches”

Once I had accepted that I wasn’t in fact evil, damaged, an alien or any of the other explanations I gave for my undiagnosed autism, I set about understanding how I actually process the world. It’s been a tough journey, but thankfully is getting easier.

Resilience is often discussed within mental health. Fortunately we can learn to become more resilient and this is all the easier when we explore this from an autistic rather than neurotypical point of view. A person whose experience of sensory processing is one of Sensory Trauma and constant invalidation from clinicians is severely disadvantaged. But many autistic people are fantastically resilient by the sheer fact they are functioning in a world that is biased towards the majority of people who are not autistic. We also tend to be able to self soothe by using our bodies and senses to regulate ourselves – this may be through our intense interests, our repetitive movements, or our ability to follow routines. Sadly these strategies that promote autistic resilience can be seen as part of the medical model disorder of autism. Fortunately autistic voices are getting stronger and society is recognising the social model of disability and the unique strengths that autistic people possess.

But it still hurts!

At this moment I have little faith in the medical system. I continue to say ouch in the wrong places because that is how my sensory processing system works. It is not broken so cannot be fixed. I have always been like this and always will be. I refuse to lie and pretend and say ouch in the “right” places.

The world needs to change. I am unable to receive the treatment I require for physical or mental health issues because I cannot articulate them in the accepted language of clinicians. I prefer to avoid seeking help because of past experiences of being mislabelled and badly treated. Although my autism has now been correctly diagnosed, it was overshadowed for many years and those past labels will always be there.

It is unlikely that in my lifetime I will be able to say ouch when I hurt, and describe my physical and emotional experiences in my own genuine way and be listened to and accepted. What a shame – and how shockingly bad that is for a society that sees itself as modern and inclusive.

There are no easy answers – I keep chipping away at the system when I have the energy – and keep showing myself compassion and self-care. If this blog resonates with your own experience or you wish to share it to spread the message further, then please go ahead and share.

Interoception is the sense most recently added to the five senses I was taught about at school, plus the two others added more recently. Learning more about this eighth sense could make a big difference to many people’s lives. Understanding that we each have different levels and ways of feeling things is as significant as realising we each hear and see things differently. We need interoception to be considered alongside all the other senses – and without judgment.