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Autism

When sensory experiences don’t make sense!

Can my sensory differences really feel like this? This blog explores some of the interesting, terrifying, joyful, stim-tastic, and plain strange, ways that humans – especially autistic humans – can experience the world through our sense systems.

The medical language about autism uses words like disorder, abnormal and atypical, and suggest that there is one, standard sensory processing norm from which Autistic people deviate. This is not the case. Each of us, Autistic and non-autistic alike, has our own individual way of processing sensory information.

How does our sensory processing system work?

Each and every one of us experience the world through our senses. Sensory processing is the process by which the nervous system receives, organizes and interprets sensory information. Sensory processing helps us figure out how to respond to environmental demands based on the sensory information available to us. As humans, we are constantly picking up sensory information from our environment via our sense receptors. As part of this subconscious process, our brains filter out sensory information that is safe to ignore so that it can focus on information important to tune in to. We also process sensory signals arising from within our body that help us to know how we are feeling, where our body is in space and the effect of gravity on our body.

Some examples of this include:

  • If I see a light that is very bright, I look away or shield my eyes.
  • When I open my refrigerator and smell the opened bottle of milk, I can tell if it is fresh enough to drink, or if the smell makes me gag, I pout it away.
  • If I climb up onto a step ladder and feel unstable, I climb back down.
  • When I notice that I need the toilet, I use the bathroom.
  • When my favourite song comes on the radio, I get a feeling of warmth in my body and I can’t help but move my body to the beat.

Being able to use sensory information in this way helps keep us safe; helps meet our body’s needs – eating, drinking, using the toilet etc; and tells us how we feel about things.

Survival Responses

When we feel threatened – when our brain perceives a threat in the environment – we instinctively take action in response to that threat. Our three main survival responses are fight, flight or freeze. Sometimes, when we are feeling regulated and in a safe place, we may be able to override these survival responses and cognitively weigh up the extent to which we are actually threatened.

Sensory Trauma

On account of our sensory differences, Autistic people may live our daily lives in a state of heightened stress and anxiety, many of us experiencing Sensory Trauma. Sensory Trauma may arise from painful and distressing sensory experiences. For many of us, these painful or distressing sensory experiences are associated with activities that are typically part of normal
everyday life. We may then face the additional trauma of not being believed, being mislabelled as over-reacting or attention seeking and even in some cases (mis)diagnosed as mentally ill.

The invalidation I experienced growing up consisted of messages along the lines of “Nobody else is complaining about the noise hurting their ears, you always have to make a fuss” or statements starting with “The trouble with you is….”. This, along with the painful sensory experiences that accompanied my daily life, eroded what limited sense of agency and self-esteem I had, and made me question my reality. My identity was already shaky due to the muted way I experienced awareness of where my body was in space and the muted sense of how I felt about people, situations and myself. I knew that I experienced the world differently to most people – and the messages I received about that, were that I was wrong! I became engulfed in shame.

If you’d like to read some examples of Autistic people’s sensory experiences, Autism Wellbeing’s free downloadable booklet, Autism: A Guide for Parents offers further insights, and is a piece of work myself and my colleagues created with the testimony of Autistic adults. You will find the booklet on our free downloads page.

https://www.autismwellbeing.org.uk/resources

As Sensory Trauma and the potential for Sensory Trauma are ever-present over the course of our days, as Autistic people, we may spend our waking hours constantly on edge, hypervigilant and at risk of tipping over at any time into one of the three survival responses. The longer we live in a state of heightened anxiety, the more our nervous system becomes used to functioning in that mode or on that “setting”. We may become habituated to being on the look-out for the next potentially distressing sensory experience.

If you’d like a more in-depth read about autism language, sensory processing and Sensory Trauma, take a look at our work.

http://www.autismwellbeing.org.uk/sensory-trauma
Buy the book (free on Kindle Unlimited)
Sensory Profiles

Each of us has sensations that we like or are able to tolerate, as well as some we do not like and find difficult to tolerate. Many Autistic people process sensory information differently to our non-autistic peers. For 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 incoming sensory information.

The two most well known sensory processing differences are due to experiencing sensory input in a heightened or muted way. My brain usually processes auditory information in a heightened way. This means I only need a relatively small amount of noise to register with my brain, and loud noises are processed as painfully loud. Whereas I need lots of proprioceptive input before I notice what my arms and legs are up to, on account of my muted proprioception. This means I tend to use too much force and appear heavy handed or clumsy. One of my earlier blogs explores sensory processing in more depth.

Sensory processing does not happen in isolation, it is not just about our ability to process that particular piece or kind of sensory information. Sensory processing is dynamic and highly context specific – it is about how we experience a specific sensation, at that particular time (in light of what has come before and anticipation of what may come next), in that particular environment, in the company of those particular people, whilst in that particular emotional state.

Sensory Modulation

Sensory modulation is an ongoing process – it’s how our brain fine tunes incoming and internal sensory signals so as to make sure we are in a state of balance where our capabilities are open to us to use. Sensory information is constantly being registered in the brain and sensory modulation continuously makes adjustments to help us function, learn and connect with others optimally. Being in this optimal state means feeling calm and alert, being open to new experiences and available for intellectual challenge, social interaction and emotional connection.


For people who have developed in a so-called typical or expected way, sensory modulation goes on all the time, ticking along subconsciously in the background. For those of us who are Autistic, (or have experienced trauma), the process is not always so smooth and many of us have developed idiosyncratic ways of being in the world that support our sensory regulation. The things we do as Autistic people to help us become regulated, may not be things that other people would ever do. We often develop highly effective sensory strategies that help us become regulated – but these strategies may be pathologised by others. This blog about the pathologisation of self-care contains my thoughts on this.

Examples of sensory strategies that Autistic people may use to regulate themself might include rocking, head banging, flapping, jumping, spinning or hitting objects. Repetitive sequences of activities and sorting things into categories may also be part of our self-regulating strategies. Autistic people engage in such sensory activities in an attempt to help us feel
embodied and safe.

Our brain’s information filter

Human brains have evolved to continuously filter out sensory information in our environment to which we do not need to attend, for example
the sound of the fridge humming or the whirr of the computer.
Sometimes, Autistic people are unable to filter out certain sensations and we may experience all sensory information in our environment with equal intensity. Conversely, we might be an Autistic person whose sensory “filter” may be so effective that it filters out too much information
and we might appear disconnected from the world around us. For some Autistic people, these sensory processing differences may vary both within and across sense systems. In addition, sensory processing differences may depend on the setting as well as our emotional state. For instance, when my wellbeing is optimal I can cope with background noise when I am working, but when I am stressed or in an unfamiliar environment, any noise can feel too much. Like many experiences in life, this variability is common across all people, Autistic and non-autistic alike. We may all have “off” days, or be unwell, overworked or under pressure, and our sensory experiences will likely be affected by these states.

Distortion, Fragmentation and Delay – This is where sensory processing gets weird!

For some Autistic people, sensory signals may become distorted as they are processed in our brains. For example, when I become stressed or overloaded, my capacity to perceive dimensional depth can diminish with the result that my environment may appear flattened and two-dimensional. Once familiar places look the “wrong” size and faces seem to distort and rearrange themselves like a surrealist painting. Some Autistic people report losing the capacity to identify or distinguish between their interoceptive sensations. Again, this capacity is often a shared human experience – many people report feeling “hangry” – a feeling of anger or irritability when hungry.

Sometimes Autistic people may be able to see a part of their body but not feel it. Whole sense systems may shut down as processing of incoming sensory information becomes too much for the brain to manage.
Delays in processing sensation may occur because the sensory information takes time to register in and be processed by the brain. This can often be clearly seen in Autistic children who experience delay in processing pain signals, with the result that they may react to an injury and its associated pain minutes or even hours after the injury occurred. My experience of pain tends to be muted. I have tried to walk off a dislocated knee! My blog about “saying ouch in all the wrong places” describes my unusual interoceptive processing in more detail. I am more able to place my pain when I have support to understand where it emanates from – a year of GP visits about earache with no evidence of infection, followed by dental appointments and an oral X-ray, showed I had an untreated abscess in my jaw. Upon seeing the X-ray image, I felt the pain in my jaw in the right place, rather than as a general feeling of “I’m not ok, I think its to do with my head but I’m not sure”.

“My fingers aren’t there! I’m sat scrolling through my newsfeed on social media, trying to tap on a message to open it and my fingers have disappeared. I can read the screen of my phone but there are blank, blurry patches where my fingers should be. I move them – or do I? I can’t see them and I’m never quite sure, when I can’t see bits of my body, whether I can actually move them or not.
I slowly move my phone around and realise that I have tunnel vision with a ring of pixelated, almost kaleidoscopic vision around it. If I move my head, I can fix what I am looking at into the centre of my vision so that I can see
it. This isn’t right, but I feel OK. I quickly scan through my body: head – OK, no pain, no dizziness; limbs – OK, no pain, they can move; body – my heart isn’t doing anything unusual, no pain or fluttering or sickness from my tummy. I can think normally; I’m not worrying; I’m not
preoccupied; I’m just going about my business as usual and this has happened. This visual disturbance lasted for a few minutes and then disappeared as suddenly as it came. It happened a few times over the next few days….
My dad died the day before I experienced this visual disturbance for the first time” (from Good Autism Practice Journal, May 2020)

Perseveration – where sensory processing gets even weirder!

This short film from National Autistic Society shows the phenomenon of perseveration.

Before I understood that I was Autistic, I firmly believed that there was something seriously wrong with me. A school bell bringing the day to a close and piercing my ears and body with pain, would still be looping round my brain and body hours later – just as painfully. Conversations and images from last week would be on continuous autoplay in my mind and jolt me awake as I was about to drop off to sleep. Situations that involved lots of information and sensory input to be processed were the most likely culprits of these invasive and intrusive sensory experiences. It is as if my brain and body are an airport and all the sensory and cognitive input are aeroplanes that land on the runways and take their place neatly in the various hangars. Only, if there is too much input, these planes have to stack up and keep circling until the runways are cleared. A simple way for people to help reduce this is to give me enough time to process series of instructions, particularly when they are being given to me in environments that have the potential to overwhelm me.

My Secret Weapon

Perseveration can be painful, distressing and overwhelming. It can also be my secret weapon!

This is because it is not only the painful and distressing sensory input that gets stuck in my body. Positive sensations can too. I have a good life on the whole. Proactively keeping myself regulated enables me to be at my best for trying new things and coping with the unpredictability of life. Just as certain sensory input has the potential to be traumatising, there are other types of sensory input that bring me joy. There are further types of sensory input that are regulating and if I give myself little top ups of this input throughout the day, I can remain in an optimal state and have increased resilience. Each of us will have our unique preferences for regulating sensory input, and for me, the types of input that perseverate most effectively include listening to music with lots of bass (so I can feel it throughout my body and not just in my ears), glissandos (a musical term for when one note glides into another – Led Zeppelin’s Whole Lotta Love, Gershwin’s opening bars to Rhapsody in Blue, and loads of Pink Floyd tracks use glissandos), weight training and stretching, weighted blankets and bear hugs. Proprioceptive input seems to be particularly effective at perseverating in a positive way.

I hope this blog has provided some knowledge and reassurance to those who are scared, confused or overwhelmed by their sensory experiences. Why not read some of the blogs and information I’ve provided links to and explore how you can use sensory input to become and remain regulated…

And never stop seeking those sensations that stick around in a positive way, or that bring you joy!

Categories
5 minute read Autism identity interoception sensory trauma Uncategorized

Making sense of feeling unsafe

A blog about mental health, emotional distress, autism and hope.

I feel like I am unravelling. Thoughts are like words outside my head. My body seems to be somewhere else. Where “I” end and everything else begins seems fuzzy, fluid, and fucked up.

Am I in pain? I don’t know.

Am I upset? Not sure.

What do I want and need? No idea – and please stop asking all those difficult questions!

I’ve had a tough few weeks that culminated in a car crash a fortnight ago. The hospital scans show that thankfully, I have no broken bones. My bruises reveal I am injured. My sensory processing indicates something is very, very wrong and I must prioritise self-care.

The one question I can answer is “Do I feel safe?”

My answer is a resounding “NO!”

My lived experience of mental illness, emotional distress and sensory processing differences, is one of fear, uncertainty and feeling very, very unsafe. As an autistic person, my experience of the world tends to be chaotic and unpredictable at the best of times and when I factor in traumatising events, illness and injury, the chaos goes up a level!

Sensory Processing

All of us experience the world through our senses. In addition to the five senses that are involved in processing sensory information coming into our bodies from outside: touch, taste, hearing, sight, and smell, we have three more sense systems: our proprioceptive, vestibular and interoceptive sense systems.

Our proprioceptive sense system is used to process where our body is in space and where our limbs are in relation to each other. Try this… Close your eyes, put one arm out straight in front of you with your thumb up. Then, keeping your eyes closed, reach out with your other hand and arm and grab that upright thumb. How you perform is based on your personal experience of proprioception in that moment.

Our vestibular sense system is used to process the effect of gravity on our body. Some of us love a rollercoaster, some of us feel queasy on a calm sea.

Our interoceptive system is used to process emotions. These emotions are grouped into homeostatic emotions which include tiredness, hunger, pain, needing the toilet, and our other internal states; and affective emotions which include anger, excitement, fear, joy and all those other feelings we experience.

The way we experience sensory input depends on our unique sensory profile – those sensations we enjoy and seek out, and those we dislike or avoid. Autistic people tend to have sensory differences because although our sense receptors (eyes, ears, skin etc.) could be working fine, our brains frequently find there is too much or too little sensory information to register. This means we may experience sensory input in heightened or muted ways.

How we experience emotions will depend on how we experience interoceptive signals. For some of us, some of those interoceptive signals may be muted – perhaps we don’t notice we are hungry until we are so ravenous, we can’t stop eating. Or perhaps we might – like me – try and walk off a dislocated knee as it twinged a bit but surely couldn’t be anything serious! If we experience interoceptive signals in a heightened way, a small amount of pain may be unbearable or we may always feel like we need the toilet, even when we don’t physically need to go.

Like most autistic people, I tend to experience sensory input differently to non-autistic people. My personal sensory profile is typically one of muted proprioception and interoception, whereas my sense of hearing and smell are often heightened. But this varies, just as it does for all of us. If I have a lot going on, my muted proprioception gets even more muted and I’ll find myself bumping into doorways even more than I usually do. My hearing may get even more heightened and human speech pierces my ears with pain and vibrations that make me respond as if I am being tortured.

My personal sensory experiences are like most peoples (autistic or not) – variable – and dependent on how I feel, who I am with and what is going on around me. Sensory processing is dynamic. This may sometimes be misinterpreted as the autistic person over-reacting or deliberately being oppositional, especially when on one day they may tolerate a sensation e.g. the noise of the dishwasher being unloaded, but find it painful the next.

When my wellbeing is poor, when I am ill or stressed or already processing too much information, my sensory experiences become more extreme – even by my own standards. Unsurprisingly, the events of recent weeks have resulted in my brain having way too much to process, and my sensory processing experiences have let me know all about it!

How might this look?

Most people are probably unaware that our brains are constantly working away in the background, fine-tuning sensory information. We need a balance of sensory input to be at our best and to learn and take part in social interactions. This seems so obvious, it hardly needs saying, but for those of us who often find there is often too much or too little sensory information, life can be more difficult. Those of us who are autistic are likely to experience differences in how we process sensory information. In addition to experiencing heightened or muted sensations, our processing of sensory information may be distorted or delayed or fragmented. Some sensory information may perseverate or stick around repeating itself long after the event has passed.

Here are a few examples from my lived experience:

  • People’s faces look distorted when I’m walking around a crowded shopping centre. Like their facial features are melting.
  • I can still hear the school bell in my ears and feel the horrible sensation in my body at 6pm, even though it went off to signal the end of the school day at 3.30pm.
  • Synaesthesia – I see musical chords as colours, and numbers as coloured shapes. Always.
  • When I am very upset or have had a shock (e.g. the death of a family member), I don’t feel sad but my vision gets patchy and I can’t see my fingers when I am trying to use my phone. I might “feel” sad months later. This can be misinterpreted as me not letting things go – when in fact, I am only just feeling them.
  • If I am overwhelmed, I feel seasick when walking and cannot bear to slow down, speed up, or change direction as I feel I may vomit.
  • I hear “echoes” of previous conversations replaying out loud when I sit quietly.
  • I cannot tell where my body ends because my proprioception is so muted. I may unknowingly invade other people’s personal space or fail to recognise my own body in the mirror.
  • I hear my thoughts and they seem to become “out loud” rather than inside my head.
  • I feel edgy, suspicious and on high alert.
  • I want intense pressure, and even pain. My body craves intense and extreme physical input. This can be misunderstood as me being reckless.

When there is far too much or far too little sensory input to register with our brains, we become dysregulated.

How we up and down regulate ourselves will depend on our own personal sensory profile – and whatever else is going on for us at the time. As an autistic person, I often find that there are fewer opportunities to regulate myself in daily life, due to my natural sensory differences. If I enter a busy shopping centre, my brain finds there is way too much of everything and I could easily become overwhelmed. If I instinctively regulate myself by stretching, or bouncing up and down, or by humming a noise that drowns out some of the unpredictable background noises, I may be at risk of being asked to leave due to my inappropriate behaviour. Read more about this in my blog ‘ Autistic traits: when self-care gets pathologised ‘.

Sensory or Psychosis?

Some of the descriptions of my lived experience may sound like hallucinations or symptoms of psychosis, and for many years my undiagnosed autism was treated as mental illness.

Things get tricky when we try and unpick what is going on for autistic people who are distressed. It is known that autistic people are more likely to experience mental illness than our non-autistic peers. It hardly seems surprising when the world we experience is often more painful and extreme due to our sensory processing differences. It is also unsurprising when we consider how our lived experience is often invalidated with comments about us “overreacting” to things other people aren’t even aware of.

Learn about Sensory Trauma www.autismwellbeing.org.uk/sensory-trauma

If we have seen ourselves as mentally ill and our sensory experiences as symptoms of psychosis then we may perceive ourselves to be deteriorating or experiencing a relapse when we are experiencing sensory overload. Of course, autistic people can be mentally ill and experience relapses and those of us who have support in place to manage those times should always seek input from the people we trust to help us with our wellbeing. My story of mental illness was one of feeling like I lacked resilience and couldn’t cope, because when the going got tough, my senses got going! For me, an increase in sensory processing disturbances would usually result in an increase in antipsychotic medication. However, whilst medication dampened down some of my distressing sensory experiences, it also dampened my joy.

For anyone reading this who is beginning to question their own mental health and medication, I urge you to talk things through with someone else before considering changing your treatment. I did gradually change my treatment, but only once I had found a reliable way of managing my wellbeing effectively. I still use medication for my mental health, but I am also incredibly proactive in keeping myself regulated.

Managing urges to self-harm

Self-harm was a daily part of my life for many years. It is not something I have done for a long time and it is thankfully, something I rarely crave anymore. There are times where the urge is still there, but I no longer feel bad about having those urges. It is unsurprising that I have cravings when it was my “go to” for so long in the past. Just like any other craving or urge, I use it as cue to give my body what it needs.

If I feel thirsty, I use it as a cue to have a drink. I have the choice as to whether that drink is a cup of tea, a glass of water, or 5 pints of beer!

If my legs feel restless, I use it as a cue to go for a walk. I might have a gentle stroll, a 5 mile hike, or a jog round the block.

If I feel tired, I might have an early night – or I might not! The choice is mine.

Sensory processing is what we use to identify what is going on within and around us – and how we respond to it.

When I feel the urge to harm myself, I use it as a cue to increase my proprioceptive input. Proprioception is my “go to” sense when I am craving intense physical input. Proprioceptive input helps us feel safe – that’s why we might enjoy a hug, or squishing our body into a tight space, or wearing snug fitting clothes or doing up our shoes extra-tight so we get a good sense of where our body is. Clinicians often hypothesise over why people self-harm. They quote people as “managing intense emotions” or “a cry for help” or “punishing themselves”. These may well be factors and like many human experiences, there is rarely a single explanation, but no-one has ever described self-harm to me as being due to “needing a big dose of proprioceptive input to make me feel safer”. But for me, and many of the people I have supported in my professional career, some of our self-harm is a very human, very natural craving for proprioceptive input – which makes a lot of sense when you consider our sensory differences.

Proprioception comes from the Latin meaning ‘to know oneself’. That is exactly what this sense does. It gives us a sense of where our body is and where our limbs are in relation to each other.
The proprioceptive signals are sent from our muscle spindles, ligaments and joints up to the brain to be processed. For many of us who are autistic these signals can be ‘weaker’ or ‘blurry’ which can leave us feeling like we have an unclear sense of where our body is.

Humans are complex and our coping mechanisms are complex. Understanding how we respond to distressing situations, whether sensory or otherwise, requires us to be nuanced in our considerations, and a short blog like this one is not able to unpack this level of complexity. My aim was to share how my own responses to distressing life experiences are always impacted by my autism and sensory differences. Identifying which experiences are mental health symptoms and which are not, isn’t always relevant. Being able to regulate myself is what is important. Being regulated helps with wellbeing, whatever the cause of the distress.

Proactive regulation

Proactive Regulation is a term Autism Wellbeing UK uses to describe how we can make sure we regulate our senses and emotions throughout the day so that we can function at our best.

For us, this might include wearing headphones in a busy shop, or carrying a scented inhaler tube to smell to help us feel grounded.

Proactive regulation also means showing ourselves self-compassion where possible, by avoiding or delaying activities that are likely to dysregulate us rather than pushing on regardless. Turning the habit of self-harm into a habit of self-compassion has been as time- and energy-consuming as making or breaking any other habit. BUT…

It has got easier the more I have done it. At first it was about “doing” rather than “feeling”. My brain and body craved intensity and pain and I had to push that to one side while I was compassionate towards myself. At first it felt unnatural, clunky, ridiculous and fake!

Me doing my self-care when it was new to me!!!

Mostly, when I feel distressed these days, I automatically see it as a cue to do some self-care, show myself compassion, and regulate myself. I even feel able to reach out to others that I trust. Here are some infographics about proactive regulation. It is important to be regulated before you need to be, in fact you can stockpile regulating sensory input for later. Just as I described feeling the distressing effects of the school bell hours later, or hearing “echoes” of previous conversations in my quiet moments, I can feel the positive effects of regulating input hours later too. Proactive regulation has been a game changer for me.

Thank you for reading this blog. I was unsure about whether to add trigger warnings as what triggers each of us may be different. Even trigger warnings can be triggering! This blog is one of positive change and hope. If you need help with difficult and distressing feelings raised by this blog, please reach out to someone or contact the Samaritans or other organisations.

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Uncategorized

Autism does NOT reduce your life expectancy – being Autistic does…

Death has been on my mind for most of my life. The uncertainty and relative unpredictability of it has made it an attractive topic for a hyper-focused deep-dive; seeking answers, clarity and a desire to find a crumb of certainty.

Some of those thoughts have led to dark places and some have been refreshingly liberating. It does not surprise me that autistic people are nine times as likely as our non-autistic peers to die by suicide. We are more likely to experience traumatic life events including bullying and adverse childhood experiences. We are less likely to be in work – and it is well known that unemployment increases risk of suicide. Autistic people have higher rates of mental illness. We experience multiple social factors that relate to increased suicidality such as needing to rely on food banks or being isolated and/or lonely.

Suicide is an issue of inequality. Death due to suicide is not evenly distributed across genders, social class, geographical area, and ages. The Samaritans have plenty of data about this – and are a source of support if reading this blog is distressing, or for any occasion where you need to reach out…and do please reach out. There IS support, and suicidal feelings and thoughts can and should be spoken about. It IS possible to get through that moment when you’re desperate or on edge. Talking or texting or emailing can help make sense of feelings and thoughts that seem indescribable, and there is ongoing support out there. You don’t have to be suicidal to seek help.

Suicide is not the only reason why autistic people die younger than our non-autistic peers. Some of the social issues we face like unemployment, poverty and isolation impact our health. Many of us have lived with toxic stress.

A certain amount of stress is essential, but toxic stress in infancy and childhood can lead to increased vulnerability to a range of mental and physical health conditions and health-harming behaviours over the life-course, including depression, anxiety, cardiovascular disease,
diabetes, stroke, alcoholism and drug abuse.

Autistic children are not only more likely to experience ACEs (adverse childhood experiences), their sensory experiences are likely to be different to those of their non-autistic peers and may result in Sensory Trauma.

This combination of factors can lead to us experiencing poorer mental and physical health outcomes, and in itself may be significant in why we have a lower life expectancy than our non-autistic peers. Add to that the difficulties we may have in noticing, recognising and communicating what is happening in our bodies due to our interoceptive processing differences and increased risk of trauma, it does not surprise me that our physical and mental health outcomes are poor.

So what happens if we are able to pick up on what is happening inside our bodies and wish to communicate that to the relevant professionals? It is well recognised that autistic people face numerous barriers when accessing health services.

Research shows that autistic people have high levels of co-occurring mental health conditions, yet a number of case reports have revealed that autistic people get the wrong mental health diagnosis and are less likely to agree with a mental health diagnosis because they didn’t feel their healthcare professional understood their condition or how to communicate with them properly.

An event causing Sensory Trauma to an autistic person may be perceived as inconsequential by non-autistic people in the same environment – if perceived by them at all. The autistic person’s reaction may be viewed as “challenging behaviour”, overemotional, or maybe not even accepted or believed – simply because the event may not be recognised as traumatic to other people. The invalidation and mislabelling that accompanies this may – as in my case – lead to an autistic person doubting their genuine experiences and eventually mistrusting their own judgement and expertise on their health and life. They may avoid seeking help or speaking out about their physical and mental health experiences, or they may not receive the medical treatment they require – or even receive unnecessary and harmful treatments and interventions for conditions they do not have.

A study in Ireland reported 80% of autistic people had difficulty visiting the GP. Whilst people with a learning disability can access yearly GP health checks and liaison nurses in hospitals, the same is not true for autistic people, with large areas of the UK having neither.

Autistic people have significantly lower life expectancies than the rest of the population. A statement from the UK government in 2021 quotes the data reported by the British Journal of Psychiatry that autistic people will live 16 years fewer than their non-autistic peers. Another report compares the range of average life expectancy for autistic people from 39.5 years to 58 years, to the global average of 72 years.

Whilst there are numerous examples of autism’s co-existing physical and mental health conditions, I do not believe research should be focused on identifying whether there is a biological or genetic component to this or not. Too frequently I hear anxiety or some other condition described as “part” of autism and therefore to be expected and accepted. It is time these ideas were challenged. Autistic people, whether they also have a learning disability or epilepsy or gastrointestinal disorder or are like much of the human race – simply average or thereabouts – deserve to have a good quality of life.

We know that epilepsy often co-occurs with autism. We know that people who experience epileptic seizures have a reduced life expectancy. But whether epilepsy and autism share a genetic component that make them more likely to occur together is largely irrelevant to an autistic person’s life (unless you were considering terminating the person before birth, in which case it becomes very relevant). What is relevant is that the person can access the services they need and receive the support they require to understand, self-manage and accommodate their epilepsy. And that will come about by designing services and treatment that meet the needs of a wider range of people. It will come about by welcoming different ways of communicating and believing sensory experiences that are different to those of your own. It will come from adjustments to how society does things, so that more people can take part.

I am waiting to find out why my life expectancy is reduced. It seems ironic that after years of battling suicidal thoughts, I am now being handed death on a plate. I am certain that the mislabelling of my own mental health and the consequent medication has played a major part in my incurable physical health condition. But I cannot escape the trauma (both sensory and event based) I have experienced – the body most certainly does keep the score. The effects of toxic stress on my developing body and mind must have played a part too. The invalidation and gaslighting and self-doubt kept me unwell and unable to seek support. My muted interoception meant I did not always know I was in pain or what it was I was feeling – and my heightened tactile sense system meant I responded completely proportionally to excruciatingly painful light touch, but to others who experienced things differently I was interpreted as over-reacting – both these experiences adding to the inaccessibility of support. Even the design of hospitals and surgeries, and the sensory overload that comes with all that white brightness, and noise makes them inaccessible. When I do step inside, my overwhelm can reduce my ability to tap into the flexible thinking, reasoning and organising I require to navigate the communication requirements of finding the right place, at the right time and telling the right person, the right stuff about me!

This is a sad blog to be writing. Sad for me, yes. Sad for the autistic community. If we were any other marginalised group in society, would our reduced life expectancy be kept so quiet? What if gay people were thought to have had a long life if they made it to 55? Surely society would be doing something these days, even though they may not have in the past. How about if it wasn’t a marginalised group? What if it was white men, like the ones who dominate the research and the institutions involved in researching autism? I am certain there would be uproar and demands to change things. Reaching 60 years old should not be almost unheard of for any group of people, anywhere in the world in this day and age.

This is a complex topic with lots going on. It needs further research that listens to and values the input of autistic people from all walks of life. But I do not think we will find answers by looking inside the bodies and minds of those autistic people to find out what is supposedly “wrong” with them, so we can make them “better”. We need to look more widely and be disgusted and offended and outraged that any group of people is expected to have utterly appalling mental and physical health outcomes that reduce their lives to a fraction of what they should have been.

If you like the photo of the Oak tree please read this blog about aging and usefulness.

The Mighty Oak

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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 by 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 experiences 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.

https://blog.feedspot.com/uk_autism_blogs/

Categories
sensory trauma

Why Autistic people may experience intense emotions….

Categories
Uncategorized

Sensory Trauma and Proactive Regulation

https://www.differentbrains.org/sensory-trauma-and-proactive-regulation/

A blog for US non-profit Different Brains

Categories
5 minute read

Taking things literally – there’s more to it than meets the eye!

Photo by Abhas Jaiswal on Pexels.com

‘Taking things literally’ is a trait or stereotype commonly associated with autism. The diagnostic manuals used by clinicians don’t include specific details on this – but many of the organisations that professionals and families consider to be an authority on autism detail it in their information:

“Autistic people can take things literally, and may not understand open-ended questions.” National Autistic Society UK

“Children and adults with autism have difficulty with verbal and non-verbal communication. For example, they may not understand or appropriately use: …expressions not meant to be taken literally” Autism Speaks USA

I’ve written this blog to share a little of how I experience the world and to offer an alternative perspective the reader may like to consider. It is all too easy for people to accept the “what’s” of autism. Endless organisations tell us the symptoms of autism, or what autism looks like to other people. I like to share the “why’s” and the “how’s”. Tell it from the inside. I have no more authority to speak for all Autistic people than the popular experts do, but I invite you to push aside what you have been told about autism for the next few minutes, and step into my mind….

Metaphors, idioms, and what happens inside my mind:

I can spot a figure of speech immediately. I have learned many of them off by heart. I automatically know that:

  • “Raining cats and dogs” means raining heavily
  • “Between a rock and a hard place” means having to decide between two equally difficult things
  • “They’re a walking encyclopaedia” means someone knows a lot of facts (but I start to giggle to myself at the imagery of a big book with arms and legs, walking down the road!)
  • Whereas someone who says they could “Eat a horse” horrifies me, even though I understand that they are more likely to eat a pile of toast than enact the picture I have in my mind of their face covered in blood, whilst discarded equine bones pile up underneath their dining table!

My mind works visually. When I am presented with information, I see an image of it inside my mind. Unsurprisingly, I can imagine objects more easily than abstract ideas. Ideas may have no boundaries or physical shape that my mind can hold on to. I want to know what a thing looks like and how it works.

Processing and understanding new information:

When I am presented with new information, my mind creates a visual image to help me process and understand it. I match that image to other things I know, which helps me understand the information in more depth.

Here is an example that you may recognise from a blog I wrote about masking. In it I describe how I frequently mask my need for clarity. The reason I mask my need for clarity is because I have consistently and repeatedly received negative feedback for asking the “wrong” questions.

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

https://undercoverautism.org/2020/05/31/masking/

As you can see, I understood this was an idiom – I certainly did not experience that lack of understanding so often assumed in information about autism.

But did I truly take the expression literally? I certainly stated in my earlier blog that my “default setting is to takes thing literally”. I assumed I did because that’s what autistic people supposedly do. These days, I am less certain that “taking things literally” is an accurate description of what is happening for me.

Had I sought clarity by asking for more information about the elephant, I would in all likelihood, have reinforced this idea of literal mindedness. My visual mind was desperately trying to match my elephant image with other elephant info stored in my brain. I wanted more information and it seemed natural to drill down deeper into the world of elephants to find what I needed.

Affordances:

Autism Wellbeing refers to affordances within our paper Sensory Trauma: Autism, sensory differences and the daily experience of fear. This useful infographic gives an example of some sensory experiences a slamming door may afford to two people in the same room. In its simplest form, each of us may perceive or pick up different affordances from the same environment, event or interaction.

So what is going on for me?

I described to my colleague Rorie, how difficult I find interpreting and understanding new ideas, particularly when they contain unfamiliar figures of speech . I need clear information up front – and enough of it to enable me to move forwards in the conversation, or the piece of reading.

The visual image created in my mind when confronted by the “elephant in the room” idiom, demanded my full attention. It was as all-encompassing and as distracting as someone expecting me to continue a conversation or read and understand a written article, but with a gong being beaten loudly next to my head!

I could not simply shift the image to one side and continue. I expressed that it was a “visual thing” and not a “taking things literally thing”.

Rorie and I reflected on affordances, and on the possibility that, when it comes to idioms, I preferentially pick up the visual affordance offered by the idiom rather than the semantic affordance. This feels right to me. My difficulties often arise from sensory processing differences rather than a lack of understanding.

As Rorie said to me, “That is a whole different way of thinking and talking about a dimension of autistic experience typically couched in terms of autistic people having ‘impaired understanding’, ‘taking things literally’ or being ‘oppositional'”

Conclusion:

There are many widely accepted mainstream ideas associated with autism that may be better understood from a sensory processing perspective rather than an “impaired understanding” perspective. I shall explore some of these ideas in future blogs.

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
Uncategorized

My changing perceptions of challenging behaviour….

https://neuroclastic.com/my-changing-perceptions-of-challenging-behaviour-reflections-of-a-social-care-professional/

Categories
Uncategorized

Autism and Christmas

Sending you all my best wishes…here is a blog I authored for NeuroClastic

Autism and Christmas