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.
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!
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.
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.
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:
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!
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?
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”
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.
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.
Our 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”, we decided to educate him ourselves. And we are all thriving because of it.
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.
My attempt at upgrading my mobile phone online failed…yet again.
There was nothing left but to mentally and physically prepare myself and head off to town. Shops are a sensory nightmare for me. The lights, the rows of stuff that flash by at eye level like a strobe light as I walk down the aisles. The noise and smell and the echoey acoustics. Everything about large stores is distressing and overwhelms me, so I avoid them or go in with a small list and a pair of noise cancelling headphones.
A difference this time was the need for face coverings. I am tactile defensive. Light touch feels excruciatingly uncomfortable. The area around our mouths is particularly sensitive and I’m well aware of what I need to do to be able to wear a mask or face covering:
A smell that is familiar and calming
Nothing touching my lips if possible
Relax and breathe through my nose and remember to keep nose breathing rather than panting with anxiety – the hot breath sensation feels suffocating
In fact a tight snood type face covering feels better than the light touch of a mask
I’ve got used to how people look wearing masks now but still find it disturbing at times. So, I prepared myself for the experience and in I went and headed for the mobile phone department. I knew what I wanted and just needed to get things sorted out and leave. My husband, in the meantime would grab the groceries.
I was regulated as I entered the store and things were ok. I began my conversation with the staff member but found I had no idea if and when he was talking to me. I was avoiding eye contact and my usual ploy of looking at a person’s mouth was ineffective as it was covered up. As a child, doctors thought I had a hearing impairment and assumed I lip read. I suppose I do to an extent but not because I can’t hear – I hear too much so can’t work out what I should be focusing on. Seeing a person’s mouth move indicates to me where the noise is coming from.
I apologised and asked the man to repeat himself yet again – and then explained that I was having difficulty understanding him. He was great and said he’d take his mask off. I went to take mine off too but he sharply told me not to! At this point I realised I was becoming overwhelmed. I start misunderstanding simple things when I feel overloaded and can appear “not with it” to anyone observing me. The man began talking louder and slower and I thanked him for taking his mask off and explained that I wasn’t deaf, just struggling to understand.
So there I was, attempting a simple task that I had rehearsed in my head from start to finish. Yet I was beginning to panic. My breath felt hot and I wanted to pull my mask away from my mouth. The lights felt brighter and the man’s voice had got louder and slower and I needed to retune my ear to understand his sudden change of tone and volume. Give me a monotone voice any day! Excitable people whose pitch goes up and down and who wave their hands about enthusiastically are so difficult to understand – it’s like they keep swapping languages mid conversation!
We got to the end of the transaction and I set off to find my husband.
Now, I know my husband well. He has fortunately kept the same look for most of the 27 years I’ve been with him. But could I find him today? No! I couldn’t remember what he was wearing and everybody had a mask on. He looked totally different. Not, “oh there he is, my familiar husband – but wearing a mask” – but like he had completely and utterly shape shifted into an unfamiliar person. So I sent him a text. I was still functioning enough to be able to think of what to do. But I was getting hotter. My body takes a while to process temperature changes. It is another reason why I dislike shopping. I can go in and out of shops in regular time, but my brain processes the temperature fluctuation between indoors and outdoors slightly slower than regular time. I have this horrible, uncomfortable time lag with the temperature change catching up with me yet not matching what my eyes and brain are telling me is going on in my surroundings.
Not only was my face feeling horrible. My breath was hot and irritating me and of course I was panicking and breathing harder which made it even worse. My whole body started feeling uncomfortable and I had to fight the urge to rip my mask off and then rip off all of my clothes and scratch myself until I could erase the dreadful sensation off of my skin.
Relief. I found my husband. I was probably a bit jittery and edgy and I asked him what was on the list and could I go and get it. This is our usual ploy on the rare occasions we go shopping together. Give me something specific to do. But one item at a time; while he does the bulk of the shopping.
It nearly worked. My husband asked me to choose something for pudding and pointed me in the direction of the chilled cabinet. The reason it nearly worked is… whilst he gave me a specific task…he also gave my overloaded brain a choice. I needed to choose a pudding from a cabinet full of puddings.
“What shall I choose?” I asked him
“You know what we all like” he said
(and in my head I thought about how I had just asked him a proper question and he had not answered it. Why oh why couldn’t he be like me and take things literally and answer my question so I knew what to do. If I ask any more I will look like I am hassling him – I’m an intelligent woman, surely I can decide on what we have for dessert)
So I stood and looked…
And I felt the tears welling up because all I could see in front of me were coloured boxes that were physically moving around and not keeping still long enough for me to choose one.
And my brain was thinking “Emma, just look at you. You can’t even make a simple choice” and my breath was getting hotter; my clothes were feeling itchier; the noise was echoing and swirling around my head. I screwed up my eyes to reduce the glare and I opted for something I could rely on…
I engaged my good, solid, logical side.
Let’s think about puddings. If I can think of one then maybe I can imagine it in my head, like a picture. And if I have a picture in my head then I can hopefully match it to one of these boxes that are dancing about, tormenting me on the shelf.
So, what pudding shall I choose?
I cannot grab at something in my imagination. I have to logically and consciously work it out; so I began my mental checklist…
Don’t just opt for what you had last time we had a pudding. (I am super proud of that one – it took me decades not to just eat the same thing every mealtime. There is a safe familiarity about knowing what you are going to eat anyway, but if I was ever put on the spot and asked to choose something to eat, opting for the thing I ate last was a quick way of responding. And unless the person had been there at that mealtime, I could get away with it and appear decisive and confident!)
What do we all like?
Not chocolate…one of us can’t eat it
Not rice pudding…the texture – eugh!
Nothing with gelatine … we are all veggie
“This is a customer service announcement…”
At that point I physically jumped. I could see my husband approaching but the noise of the announcement sent my heart thumping and my ears ringing and I completely lost my train of thought. And my hot breath and the sensation of the mask intensified. I wanted to rip off everything that was touching my skin…and then rip my skin off too!
But I know that supermarkets are difficult for me. I could feel the usual sensory overload increasing and I knew the inevitable consequence of trying to battle through this, would be to completely overwhelm myself to the point that I either shutdown completely in order to protect myself from further overwhelm – or become so overwhelmed I was unable to control my responses.
So I said to my husband that I needed to go outside and could he finish without me. I then looked straight ahead and plotted my route out of the store. I had a kind of tunnel vision going on and I fixed my gaze on a distant point and like a guided missile I aimed for it. Had I been able to physically see the people I undoubtedly brushed past quite rudely on my way out, I would have apologised. But in that moment, I knew I had to get out and regulate myself. I had enough processing power to plot a route and follow it – but none left for adapting to anything that got in my way once I had executed my escape plan!
As I stepped outside I ripped off my mask and walked away from the store. The experience was nothing new. It is my normal. It is intense, painful and distressing. But expected. I was proud that I had recognised it and not battled on – you cannot win a sensory war by willpower. I also knew how to regulate myself.
I found myself an upright post to lean against and press with my whole body. I noticed where my body touched the post and where my feet touched the ground and I pressed and pressed and tensed all my muscles and then relaxed them until I was confident that I was in my body again.
I looked up at the sky and relaxed until a seagull flew into view and I let myself notice it and watch it, enjoying the unpredictability and respite from having to control something.
I breathed the cool air through my nose and noticed how it felt and I breathed in and out slowly.
I got my phone out and played on an app that I find soothing and I spoke to myself in my mind with gentleness. Not berating myself for not coping. Nor did I let myself focus on any negative thoughts about the store, or the staff and customers.
Actually, I had coped well. These things happen. I needed to enter the store and I had planned it in advance. I got myself out before I was overwhelmed and I regulated myself. I had not needed to wear a face covering for such a length of time before and I shan’t do it again. I’ll avoid shopping or take breaks.
I carried on with my day. I also recognised the vulnerability to further overload that happens when I have to endure sensory pain. I took things easy and didn’t put myself in situations that had the potential for further sensory overwhelm.
Over the next few days I reset myself by allowing my body, brain and senses to seek out and repeat the sensations that would soothe me.
But my fragility has lasted. I had to endure further stresses. Not noise and lights this time but emotional. Again, I planned my response. I followed my plan. I used self-care strategies proactively and treated myself with compassion.
This time my already fragile body responded by feeling severe pain in my ears – most of my senses are now functioning at a ‘normal for me’ level, but not my auditory processing. My hearing is so sensitive everything hurts. It is a week since the experience in the store and I am functioning well enough, to everyone looking in at me. I am fairly happy. I have coped with my ups and downs just as well as anyone would. I am productive and focused, and I haven’t treated myself or anyone else with anything less than respect and dignity.
But the physical pain is almost unbearable. I have cried a few times in desperation as I cannot escape it. Most of my senses are fairly well regulated but my sense of hearing will not settle. Every noise pierces my ears and hurts me. The noise of cutlery on crockery is so bad I cannot eat with my family. It feels like everyone is shouting at me. The most tormenting noise comes from within me though. Despite my expensive noise cancelling headphones and almost round the clock self-care and self-regulation strategies, I cannot find peace.
I can drown the noise out with very loud, rhythmic music but I cannot escape the noise of my heart beating and my blood rushing through my body when the external noise subsides.
This internal noise has accompanied my life. It is not always there but I can find it when I want it and in fact, it gave me some comfort as a child, as well as frightening me at times. On occasions it is so loud it physically hurts. Now is one of those times.
I remember as a little girl, we sometimes needed to get the doctor out as I would sit crying and rocking and banging my head against something to make the noise and pain stop. I can remember him coming in the night to sedate me. I would gladly welcome him now!
Each noise, whether internal or external is like a sharp stab of pain in my head. I understand why as a child I would bang my head and rock. In fact, I woke this morning with a fine matt of hair on the back of my head from the rocking I often do in my sleep when I am dysregulated.
Gradually it is easing, and I remind myself that this is how my life is and always has been. I will probably always experience times like this. When I keep my senses regulated I can cope with fluctuations in sensory information much better. When I am in a state of distress, everything can become the last straw.
There hasn’t been a last straw this time. I have been able to apply the healthy strategies I have learned to keep myself functioning.
The consequences of Sensory Trauma can be catastrophic. Terms like “meltdown” have become almost common place and do not capture the pain, severity and impact of sensory overload. It is not just a short-lived reaction born of poor tolerance and low resilience. Even when a meltdown is avoided, my body pays a price. My body has been physiologically activated and is hypervigilant and on alert. Without the escape of shutdown or catharsis of meltdown I wait in a sensory nightmare, hoping it will soon stop.
Experiences of sensory overload may be misdiagnosed as psychosis, or personality disorder. Perhaps they are viewed as attention seeking or over-reactions. Understanding my sensory processing system has helped me accept my experiences and not be scared of them. However, they are real experiences and have not disappeared just because I know what they are.
The world is an overwhelming place. Even with my practiced strategies and proactive approach to managing my life, there are inevitable times where Sensory Trauma occurs for me. My experiences may sound dramatic, but they are totally normal in my experience of the world. All day everyday I need to proactively regulate myself and keep the build up of potential Sensory Trauma at bay. It takes a huge amount of energy, but thankfully less energy than spending my life in a constant state of dysregulation.
I am tired now because I am in pain. I have had needed to keep myself living slowly and calmly so I don’t flee away from the pain or absorb myself in distracting but destructive pursuits to take my mind off it. I have incorporated endless self-care into my days and hold on to the knowledge that this will pass at some point. It always does.
If you know someone who cannot articulate their sensory experiences in speech, please consider how they may be experiencing the world.
Challenging behaviour, masking, meltdowns, shutdowns – look beyond the behaviour and stereotypes.
I’m sat at my desk at work. Outside the lorries have been reversing non-stop since 8am. Each “beep beep beep” sends an arrow of pain and shock straight into my chest whilst simultaneously burning my eyes and ears. I can hear my colleagues laughing and joking in the corridor outside, completely oblivious to my pain and to the lorries. I don’t want to go and see them because the tsunami of perfume and aftershave mixed with the sudden change in brightness when I leave my dark room for the fluorescently lit corridor will hit me so hard it will almost wind me. And their voices will get even louder, and the laughter will hurt my ears and make me jump and sound like someone chucking a bag full of spanners into a washing machine on spin cycle.
But it’s ok. I stay where I am, hyperalert and shivering at the thought of someone opening the door to my office to see me. If they do, I will need to quickly whack my mask of normality on, and pretend all is well – and nod my head and make eye contact and fight the urge to hide under my desk and sob. If I am lucky I will still be able to speak but will probably say something a bit awkward or slightly out of place as my overloaded brain tries to coordinate thoughts into spoken language.
I’ve tried to tell people how my world is. Some doctors thought I was mentally ill. Some colleagues thought I was unsociable. Teachers thought I was lazy, distracted or not trying. Some friends thought I was weird. Some partners assumed I was overreacting. I always knew I was different but couldn’t quite say why – if I wasn’t an alien; and it wasn’t pathological; it couldn’t have been spiritual, then what was it?
The trouble is this is my reality every single day. All day. It is not an overreaction. It is not an exaggeration. It fluctuates so can be difficult for myself or others to anticipate.
This is how my sensory processing works. Nothing more, nothing less. Simple. My sensory processing system works differently to the majority of peoples.
Why is my sensory processing different?
Again, the answer is relatively straightforward. I am autistic. I was born with a sensory processing system that works differently to other peoples.
My earliest hospital notes refer to how I would not feed or would feed very slowly and if someone persevered with my bottle of milk, I would typically fall asleep whilst being fed.
Roll on 47 years and I am still the last to finish my meal. A few weeks ago, I was discussing this with a friend who is far more knowledgeable about sensory processing than me. We were both eating an apple and I discovered that I have a completely different awareness of sensations in my mouth than she does. I can feel food on my lips and the tip of my tongue, and then again as I swallow, but in the centre of my mouth I have almost no sensation. This means that when I eat I feel very stressed because I never know when food is going to reach the back of my mouth. I frequently gag and I am highly anxious about eating because swallowing often comes as a surprise and catches me out. My awareness of how my body feels is muted.
This is quite different to how my hearing works. My brain tends to process sounds as very loud and harsh. Some people may refer to this as hypersensitivity. Whereas my brain processes sensations in my body as quite muted. Hyposensitive interoception you might say. These terms are all well and good for clinicians who are not autistic – they tend to feel comfortable using their sensory experiences as the “norm” and measure my experiences as “too much” or “too little”. My normal is different though and always has been.
This experience with my friend and the apple helped me understand more about how my sensory system works. Interestingly I was yawning non-stop by the end of our focused fruit eating session, and I did have a lie down and sleep afterwards. This is very typical of how a human being’s nervous system works when we are in danger. Fight, flight, or freeze. My parasympathetic nervous system responded to my stress and I couldn’t help but crash out for an hour or two. Just like I did as that tiny baby who felt distress at having something in her mouth from the moment she was born.
My reactions to certain sensory information are totally proportional to what my brain is processing. It is logical to run away from danger, or fight if your life is being threatened. Completely normal to freeze if you are terrified, or collapse and disconnect if everything is too overwhelming.
The difference between myself and someone who experiences eating an apple as mundane; or laughing colleagues as insignificant; or reversing lorries as mildly irritating at the most – is the way our sensory processing systems work. My brain processes those sounds and sensations differently to the other person I have just described. My brain gears my body up for action or inaction because it perceives a threat that the other person does not.
My reactions are normal for me. Their reactions are normal for them.
I have always been like this because I am autistic, and for me this is how my sensory processing system works. It is not a choice; it is part of my neurology. Other autistic people have their own sensory processing experiences because we are not just made up of our neurology, we have our physiology; our life histories with all their joys and traumas; our individual personalities; and our own psychologies, capabilities and characters.
Each of us perceives the world differently. To me, a vacuum cleaner may be a terrifying source of noise that looms towards me, spewing its musty, dusty smell and roaring like a belligerent dragon. To you it may be an innocuous piece of cleaning equipment whose only fault is it takes up too much room in the cupboard under the stairs! I understand perfectly well what it is for. I’m certainly not scared of it and I absolutely don’t feel any emotions towards vacuum cleaners in any form – positive or negative – they are vacuum cleaners for goodness sake!
For me, this piece of equipment causes me great distress because of the effect it has upon my senses. For you it is fine. We both see the same item, understand its intended function in the same way, but our relationship with it is very different. It causes me pain in my ears and makes my body react as if I am being attacked… It cleans your carpet.
There is no right and wrong in this situation. We perceive things differently. A bit of mutual understanding can go a long way. So can a bit of common courtesy. I wouldn’t do something that hurt you, so please don’t do something that hurts me. I cannot desensitise myself to this, its how my body works.
Of course, many of us grow up assuming our perception of the world is shared. I didn’t know that most people don’t have to have their food arranged in a certain way because vinegar or sauce touching bread would require the whole meal to be thrown away due to the unbearable texture created when bread gets damp. You may find that outrageously picky and assume I am spoilt or attention seeking. You may assume that everyone finds the smell of perfume enjoyable (they don’t!) or that everyone likes to look at spreadsheets on a computer (believe me I can’t!) or that brushing your hair is easy (some days, it really, really isn’t!).
My reactions to sensory information may well appear unusual to you. But for me they are logical and proportional.
Spending my day to day life in anticipation of what distressing sensory experiences may happen next takes a toll on my health and wellbeing. It is not healthy to spend my life in an activated state, hyperalert because I am scanning for latent danger. The ordinary activities that happen frequently throughout the day are an unavoidable potential source of trauma for me. And maybe people won’t understand when I demonstrate how distressing they are – perhaps they will think I am overreacting or have challenging behaviour. Maybe they will pathologise my reactions and mislabel them or not even believe me at all.
My experience of the world and the way I react to it has impacted on how I am perceived by others; how they have responded towards me and how that has affected our ongoing relationships. It made me more vulnerable to other types of adverse life events and left me growing up without a sense of agency. I was left invalidated and unheard.
I’m not the only one…
Autistic people have been describing their sensory differences for a long, long time. Blogs, interviews, and personal testimonies are filled with evidence of sensory differences and the effects these have on autistic people. Autism and trauma are discussed together frequently. They can manifest in similar ways and be difficult to tell apart. Being autistic increases vulnerability to trauma – of course it does! Being in a minority in a neurotypically biased world where your differences are perceived as deficits is not a good starting point for anyone.
But there is more to it than that…
The way I perceive the world through my senses is in itself traumatic. Repeatedly experiencing unavoidable pain every day that makes my body react as if it is in mortal danger is traumatic. Not being believed is traumatic. On top of all the trauma I have experienced due to the impact of my autism and the adverse life events that I have been through, I have experienced trauma since birth. Perhaps even before birth. This is sensory trauma.
Sensory Trauma has been hidden in plain sight for a long time. It is time to start some conversations about this lived experience of autistic people. It is time to be listened to. At Autism Wellbeing we have prepared a position paper about Sensory Trauma and made a short video about it.
I would like to hear other peoples experiences of sensory trauma. We are publishing our book soon and are interested in feedback on our position paper.
Our position paper has been published by ourselves at Autism Wellbeing because we want it to be read as widely as possible. It has only just been made available – please leave a review on amazon if you decide to buy it. You can purchase the position paper here:
All humans have needs, starting with the absolute essentials we need to stay alive such as food, water and the air we breathe; along with all sorts of other needs depending on our individual personalities, physiology, social and emotional requirements.
Whereas the essentials are things all humans require, we may each need different things in order to be able to thrive and reach our potential. Do we ever reach our potential as humans? Who knows? But what I do know is that on the journey towards self-actualization we must consider our uniqueness as individuals.
And for me that includes my autism.
What makes this different for me as an autistic person?
Like many autistic people growing up, I was painfully aware that I was fundamentally different to my peers. I did my best to fit in with them in order to minimise the teasing; the exasperation I created in others; and the bullying. This involved a common strategy used by many people, including autistic people called ‘camouflaging’ or ‘masking’.
As a girl and young woman, autistic masking involved me acting in a way that meant I appeared more similar to my peers than I was – this included pretending I was interested in things that girls should be interested in like bands, boys and make-up. It involved me not asking too many questions that would expose my naivety and my particular thinking style – going along with conversations that involved euphemisms and slang in the hope that all would become apparent. It rarely did!
And hiding any mannerisms, movements or ideas that exposed my autistic differences.
Interacting like this meant I frequently missed out on getting my questions answered – or even asked, most of the time! It meant that I never quite understood how friendships and relationships truly worked, I just sort of understood what it was people did within them – and I tried to copy as best I could. I avoided many social situations because they did not appeal to me, and I was not particularly popular because I did not appeal to my peers either.
All in all, I missed out on lots of knowledge and information that my peers were able to gain through intuition and knowing how to ask the “right” questions, rather than the random, unfiltered questions that went off on a tangent like mine frequently did. My social development wasn’t behind that of my peers because I lacked capacity for understanding, it was behind because I lacked opportunities for gaining understanding. I was too busy masking.
For example, I was bright enough to know that asking my classmates what the technical difference was between the two intimate-relationship based expressions: ‘getting off with’ and ‘having it off with’ would end in them ridiculing me. So, I did not seek clarity. I tried to logically make sense of the language to find the answer out for myself, but failed. That boy stuff all seemed quite odd anyway, as did most of human behaviour, and my naivety and vulnerability exposed me to many risks and left me ill equipped to cope with relationships, and understanding and advocating my needs, rights and desires.
Another negative impact of masking my autism meant I was unable to regulate my senses. I did not recognise or appreciate the impact that noisy, brightly lit, and smelly environments had on me, so I didn’t avoid them or limit them. I forced myself to carry on whilst on the verge of total overwhelm – or I shut myself off so that I could function without feeling anything at all.
Opportunities for gaining knowledge, and for developing decent coping strategies, self-advocating and asserting myself were denied due to my survival strategy of masking my undiagnosed autism.
I’ve done OK, I’m beginning to thrive and I’m recognising my potential and the value of my uniqueness. I’ve got to this point through gaining acceptance of how I am, and by playing to my autistic strengths.
What has this journey looked like for me?
My journey is ongoing, I certainly haven’t arrived at a destination where I have found my purpose – but on the good days I am beginning to thrive instead of just about making it through yet another day of struggles. Life has become less of a struggle – but there was no “Eureka!” moment of throwing away that mask, embracing my autism and finding the world had suddenly become welcoming of my neurodivergence. The world remains biased towards people who on the whole are not like me, society still needs to change and become more inclusive. I am grateful because I have more insight and opportunities than I have ever had that I can use to make my life better.
Unmasking and being authentic
I have always wanted to be accepted for being me, I have longed for people who will appreciate my questions; my unique perspectives; and my differences. But that doesn’t mean I can act impulsively or disregard other people’s feelings – even when those feelings are very different to my own and seem illogical to me.
Humans are social animals. I find social occasions challenging due to my sensory and cognitive processing, but I recognise that I have social responsibility towards my fellow humans. Like many autistic people I am passionate about equality and fairness and I become distressed at the injustices I see in the world and continually seek ways of balancing inequality and making the world a better place.
So taking off my mask and behaving authentically autistic by stopping people mid-flow to ask for clarification; or correcting someone who has made a mistake; or publicly laying on the floor rocking and crying because the noise, lights and smell of the room have become too unbearable; or distracting everyone else by moving about; or telling someone exactly what I think of them – these are all things that are genuinely “me”. They are my default settings in some ways – but should I take that mask off and show them? Or should I keep it all in and hide how the world is making me feel, keep the mask on and let my identity and self-esteem slowly erode away?
For me, the answer is “neither”.
We are social animals; our actions usually impact upon others. Our actions create responses in others and shape their attitude towards us and how we are subsequently treated – whether this is right or wrong means nothing. There are consequences for everything we do.
There will be times that I am blunt, I will say what I think, I will correct people or stop to them mid-flow in conversation. I will need to move about in order to regulate myself. I will experience sensory overwhelm in such a way that I am debilitated by it sometimes. As I said before, these are my default settings – I did not choose to have senses that work in this unfiltered way. I do not choose to take things literally. I am driven by seeking balance and find injustice so very “wrong” I cannot turn a blind eye to it. In fact, many of these so-called aitistic deficits that I was born with, are also my autistic strengths.
Can I unmask then without experiencing negative consequences?
I believe that everyone masks some of the time. It is what makes us human – and social. No one can be unfiltered, or impulsive, all the time and function well socially.
So, I choose not to mask my autism – I own it! And that means being proactive and taking responsibility for myself as well as others. Here are some examples of ways I am authentically autistic:
If I know something is going to be difficult, I prepare. I don’t mask my autism to myself either! Going to town is tough so I plan short trips, I take headphones and my bottle of water. I keep scented nasal inhalers in my bag. I don’t keep pushing myself but take time out to regulate my senses and take stock of the situation. I am proactive so that the chance of me becoming overwhelmed is reduced.
I make arrangements prior to needing adjustments wherever possible. I let someone know that if they are holding a meeting, I will need the agenda up front. I ensure people know that I prefer a text first if they wish to speak to me on the phone. Or if someone just calls, I don’t answer but ring back later when I feel comfortable rather than answering and becoming stressed. If I am entering a conversation where I am likely to need to ask questions, I’ll ask upfront how to do this best. “I’m much better at taking things in when they are written down, do you mind if I make notes please?” or “I tend to lose track if I need clarity, is it ok to interrupt to ask questions if I need to please?”.
I am assertive. If I am asked to do something that will be difficult for me I will state my needs up front without needing to justify them endlessly, make excuses, or apologise for how I am: “Emma, would you like to come to a party on Friday?” “No thanks, I really don’t enjoy parties myself, but I hope you all have a lovely time, thanks for asking me”
If I need to regulate myself, I will politely leave and go and do whatever I need to do, rather than trying to get through the situation silently whilst hiding my needs or disrupting everyone else. I will keep things to hand that help me – I may have things to fiddle with, to stroke, to crunch on, to drink. I’ll choose the chair that suits my needs best and I’ll sit near an exit and I’ll ask if there is noise or lighting that can be adjusted if need be.
I am quite a private person, so I tend to state my needs with little explanation and add to that if necessary. I do not need to justify why I need things to be like they are. Sharing my diagnosis is occasionally helpful but frequently people don’t have a great deal of knowledge about autism and may even misunderstand it. If I am not in the mood to be their teacher, I don’t have to be! It is ok to say “I am not able to wait in this queue because of my disability, please can I go straight in?” I have frequently found that if I am assertive, people will respond more positively than if I bombard them with information about why I need something.
What really, really helps?
Like many autistic people, I have a life full of effort. Effort to fit in, or effort to hide how I really am. Effort to not offend people. Effort to understand how everything works.
Even my unmasking is full of effort. My unmasking means I own my autism and I am proud of who I am and what I have achieved. But, my autistic default settings, as I like to refer to them remain unchanged. I do not choose to be blunt in order to offend people – I am puzzled that some other people do not value honesty as much as I do. I do not ask questions to annoy people, but to understand them better. My need for peace and quiet is not done on purpose to be awkward. My logical way of thinking that is so useful in some situations may seem out of place when it comes to interpreting hidden meanings or reading between the lines – but I accept that many people prefer operating in this complicated, tricksy – dishonest I might even say – way.
I can’t really hide these fundamental facets of my personality. I don’t feel a need to apologise for them either. My autistic deficits (if you view autism in a medical way) are also my autistic strengths: my integrity, my eye for detail, my innovative ways of thinking, my passion and depth of knowledge.
All humans have strengths. All humans are imperfect. That is something that unites us – autistic or not.
So, when I do act authentically me – yet offend you, please remember this: I am probably doing my best. I am probably not being deliberately annoying or trying to point out your errors. I may have defaulted to the wrongful assumption that you see the world as I do. Please try and see the world as I do for a moment too.
I will take responsibility for myself and accept my social responsibilities. This means that I recognise that not everyone else experiences the world like I do, and my actions may be interpreted differently to how they were intended. It helps me when non-autistic people reciprocate and take my perspective and discover how I am perceiving the world. When this happens, they may realise that my lack of eye contact is about conserving my strength for concentrating on their spoken word, rather than becoming overwhelmed by the deluge of sensory information that comes from eye contact. Then it becomes less important to them as they understand that I am not being rude. Then our interaction becomes more positive.
I believe that autistic people compromise, and even deny their needs endlessly. Masking our autism means our needs don’t get heard or met. We constantly try to fit in with a world that may feel alien. My description of how my unmasking works demonstrates how important my sense of social responsibility is. Just because I don’t like hanging out with people for fun, doesn’t mean I don’t care about them. Perhaps if more people were willing to meet me halfway when it comes to communicating authentically, we would have more fun!