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.
Dear Doctor, Dentist, Hairdresser, Kindly Neighbour reaching out to touch me during conversation…
I may like you, I may not. It doesn’t matter. This is MY body. I do not have to give you access to it.
Please do not presume you can touch me – whatever your motives or profession.
I may ask you to touch me, I may ask you stop. Please respond with respect.
If I react by pulling away, asking you to stop, or acting in any way distressed then stop immediately.
Do NOT ask if I’m OK. I’m clearly not and it is not for me to justify why, it is my choice. Instead consider what you can do to make this easier for me.
Ask me if you can touch me or tell me what you are going to do.
Give me time to process that and wait for me to agree before touching me.
Do not tell me you will be quick; it will soon be over; or it doesn’t hurt. Do not keep going when I say stop. These actions are disrespectful at best and abusive at worst.
Maybe I don’t like being touched by other people because of how my sensory processing system works – many autistic people don’t. Maybe it’s because it triggers memories stored deep inside my body – of abuse, pain and trauma. Maybe I just don’t like it. Maybe one day it is OK and one day it isn’t. That is none of your business. I don’t need to “get over it” so that you can touch me. I don’t have to dissociate so that you can touch me. I don’t have to put up with it so you can touch me. You just need to take my lead because it is my body.
If you are reaching out physically to connect with me emotionally and I don’t reciprocate, then thank you for wanting to connect with me. Please don’t take the reaction of my body pulling away as rejection. Please find a different way of connecting with me that works for us both.
I do not need to give a reason for not wanting to be touched – however, please consider that every person you meet has an inner life that you may know little about. Autism, sensory processing disorder, PTSD, trauma, abuse. Or perhaps they just don’t want to be touched – that’s fine too.
Make no assumptions about how I wish to be touched. There is no hierarchy of body parts that you can have freer access to than others. It is all me and it is all my body. You don’t know how I process the sensation, and you don’t know how I perceive your touch. If I feel violated, frightened or under threat, your motives are irrelevant – telling me you won’t hurt me is irrelevant. Showing me you won’t hurt me by stopping IS relevant.
It is 2020 – this should not need to be said.
“Non-vascular plants tend to be small, but some grow quite large”
That was one of the last pieces of information I remember hearing in a classroom. It also gave the kiss of death to my academic endeavours at that time.
I had wanted to study this particular ecology course for years and finally took the opportunity following redundancy to enrol on a course. It was mostly practical – hooray! It was topic based – even better! And it was my absolute favourite subject, and I already knew masses about it – I’d be surrounded by other interesting mature students and we’d spend loads of time outdoors in the field and minimal time indoors – what could possibly go wrong?
What went wrong was that my way of thinking, learning and understanding was completely incompatible with the course providers way of explaining, teaching and describing.
What would have helped me when the lecturer described non vascular plants, was an example, a diagram, a photo or something to get my head round so I understood what they meant.
What actually happened was this conversation inside my brain…
“NON-VASCULAR blah blah blah SMALL, SOME blah blah blah LARGE”
I started rooting around (pardon the pun!) in by memory bank for a seed of information (sorry!) that I could grasp hold of to help me clarify what the lecturer meant. Imagine the mental equivalent of searching in your laptop files for a folder named “non vascular plants” and the computer processor whizzing through every available file one by one to find the best match.
At that moment what I actually needed was to press pause and make the teacher stop while I searched for information. I don’t possess a speedy processor like a computer has, and that’s not how education works. You can’t put people on pause, it would disrupt them and everyone else. So I did the next best thing…
I took a deep breath, braced myself for looking stupid, and stuck my hand up. I tried to catch the teacher’s eye, but without having to make eye contact – not an easy task! Fortunately she noticed me and I asked “Can you give me an example of a non vascular plant please?”
And she said…”I’ll get on to that in a minute” and carried on describing the various attributes of non vascular plants:
- They don’t have special tissues for carrying food and water (xylem and phloem)
- They tend to be smaller than vascular plants
- They don’t have seeds
- They prefer water
So now several things were happening inside my head.
- A voice from my youth was telling me “See what you’ve done? What a stupid question. Everyone else knows apart from you. You need to sit still, everyone hates the person who asks questions. Even the teacher. See, she won’t even answer you”
- So I had a bit of a mental battle with that unpleasant voice, along the lines of “It’s fine to ask, you need an example so you can create a visual image in your head and get on with learning. Stop giving yourself grief. You are 46 not 6. You are not at school. You know this triggers you. Relax. You’ll do fine”
- I was aware that the teacher was still talking but I was actually too engrossed in my internal battle to know what she was saying.
- I was also aware of the fly buzzing (interesting) – the lights flickering (ouch!) – the pencil tapping (annoying) – the chair scraping (aaaahhh that HURTS!!!) – the breeze through the window (nice) – the bird outside (I wonder what it is and what it’s doing?) – the breathing of the woman next to me (creepy) – the minty breath of the man across from me (yuck, I hate kissing people who chew gum, it’s icky and sweet and minty cold – I hope I don’t have to kiss him – get a grip Emma, why would you have to kiss him?!) – keep your hand still Emma – DO NOT do that hand thing you do to calm yourself down – take a drink of water instead (you’ve overpoured it and it’s running down your chin stupid – don’t think about the horrible cold wetness) – the brightness of the whiteboard and the reflections on it (don’t even look!) – the people walking past (FFS don’t they know I’m trying to concentrate) – sit up straight ( that’s ‘A VERY IMPORTANT THING’ in education, the ability to sit on a chair properly) – when did I last pee? I hope I don’t need to go. Do I need to go? Goodness knows, but what if I do? (panic) – the ceiling tiles don’t match (why don’t they match?) – keep your hands out of sight Emma, for goodness sake don’t calm yourself down (they already know you are thick because you don’t know what “large” means – don’t let them see you are weird too) – the picture on the wall is crooked (why??!!!) – and the myriad of other things that were of absolutely equal importance to my brain at that moment – and always, always are.
- And I was still trying to work out what was meant by “Non vascular plants tend to be small, but some are quite large”. My brain was thinking…”Small like a tennis ball? Or an ant? Or something else? Empire state building large? Or an elephant? Surely not, what else is large, I wonder what it can be large like?”
- I am a visual thinker. When someone says a word, I create a picture in my head. That’s possibly why I am more comfortable in the world of science and tangible things rather than in the world of abstract ideas and fantasy. I can do abstract ideas, but I need to make them concrete somehow. That’s why I love analogies and sharing examples of how autism works in practice and what is going on undercover.
- I had no picture of a non vascular plant to use as a starting point. I had nothing to measure “small” and “large” against. Further describing the attributes of a non vascular plant added additional processing demands. Learning that a thing I cannot imagine anyway, has no seeds and no xylem or phloem is asking me to take an unknown and then asking me to take stuff away from it. My brain was ready to pop.
- And all this reminded me why me and education don’t work. And my self esteem plummeted.
So whilst I appreciated the teacher’s need to get on with the lecture, I was left floundering…and behind everyone else in the class. If she did go on to give an example of a non vascular plant, I missed it. My urgent attempts to block out all that unfiltered sensory information, soothe the tormented schoolchild in me who was busy reliving the trauma of her early educational experiences, and work out what a non vascular plant could actually look like, got in the way. In fact, it could well appear that I interrupt and then don’t bother to listen to the answer. In fact, I am sure I’ve heard teachers tell me exactly that!
So what could have helped?
Easy. A simple response to my request for an example: “think mosses, liverworts, low lying plants without roots and seeds, non-vascular plants tend to love water” would have been fine.
That would have given me enough to go on.
Or this could have helped if it was displayed on the Powerpoint presentation. Thinking visually doesn’t mean you need to give me a physical picture. It means you need to give me the information I need to create a picture for myself:
Or something like this may have helped me and would have been quicker to process than the above example:
Any of these three ways of giving me an example would have enabled my logical brain to work out how to define “small” and “large” and identify what was meant by non vascular plants. I would have known that the Empire State Building was a bit much because I could have applied my understanding of “oh, it’s something like a moss – of course, if it’s large it’s not likely to be tall because it is not rigid enough” etc etc
So why did I feel a bit thick?
Because everyone else “already understands” what large means in this context. So why don’t I?
I have an open mind, of universal proportions. It is unfiltered and massive and capable of zooming into the atomic level in order to understand something, and then zooming back out again and looking at it from every conceivable angle – plus a few inconceivable angles too! This is why I am renowned for “thinking outside the box”, talking utter nonsense, and coming up with some inspired ideas – and half the time I am not sure which is which. I am not constrained by convention or accepted hierarchies or preconceived ideas.
My world is not only big and unfiltered, it is fluid and shifting and changing all the time. My sensory processing works in such a way that my experiences of sensory information fluctuate. We all experience this – think how much louder a noise sounds when you are scared and alone at night. Or how everything looks brighter when you are happy. My brain needs much more, or much less sensory information to register the sensation than some people do anyway, and this is further affected by everything from my mood, to my health, to the type of environment I am in and how busy, bright, loud and smelly it is.
What I “know” about the world, does change from moment to moment because my reality is chaotic and ever shifting due to the way my sensory processing system works. I create order, predictability and systems to understand things and to anchor myself to. I learn facts off by heart. I match the unknown to the known in order to learn. It is completely feasible to me that “large” could mean elephant size or the Empire State building size.
I have no natural filters, to help me find the “correct” answer, so I use my own filters. They are called “taking things literally” and “logic”. I impose routines and structure to give me that order and predictability that is missing from my world. The more chaotic my world becomes, the more I rely on my filters.
When I don’t have enough information and apply logic or take things literally it can expose truths that others gloss over and miss – I notice things or patterns that are frequently overlooked by other people. It can also involve me appearing to misunderstand things. I may have made perfect sense of what I know – but if what I know is only part of the finer detail, and not the bigger picture, I could be completely on the wrong track.
I struggled through the rest of that day on the course, determined to prove I had what it takes… I didn’t. I had further struggles with following instructions – “go and gather some plant material” was followed by me sneakily watching what my classmates were doing and copying. I knew “plant material” didn’t mean a whole tree but WTF did it actually mean? The trouble with sneakily watching and copying, is it rarely goes undetected. In a school setting it can easily result in taunts of “look at her copying us, do you want to be our friend Emma?” followed by laughter and further mocking. Explaining my way out of that situation by telling my classmates in a completely honest and logical way “no thank you I don’t want to be your friend, I don’t even like you” does not actually result in appreciation of my honesty, or even relief that thank goodness the weird kid doesn’t want to be their friend. It further alienated me from my classmates and made teachers think I didn’t even want to try and fit in.
I got to the end of the first day of that weekend long course, ate my meal in the communal dining hall – further sensory and social nightmares – all whilst desperately trying to convince myself I could do it and I wasn’t a total failure. But I couldn’t do it. I went to bed and awoke at 2.30am and spent the next 4 hours crying and tormenting myself about how useless I felt.
I am sharing this glimpse into a few hours of my life to show how my brain processes things. The way I logically think and the way my sensory processing works. But what I really want people to realise is the impact of these things. I cannot help how I am. It is not a choice. I am not deliberately asking stupid questions, or not listening, or getting distracted.
“Trying harder” adds a further layer of pressure that alerts my senses to scan for danger and my brain to process the sensory information it is receiving in more extreme ways – everything gets even louder or even brighter – or I can no longer feel where my body is and what it is doing unless I look at it. My world becomes more chaotic and I need more structure. I lose my anchors and come adrift and I have to seek clarity and create order. I suddenly need to ask more questions, I become more literal, I need to do more of those things that that regulate me. I can risk the outcome and not do these things, or opt for self-preservation and mask these needs. The resultant masking is a temporary fix that leaves my needs unmet and chips away at my self-esteem and identity.
There is a living, breathing, beautiful human being behind every assumption we make about what autism is or isn’t. My face may lack expression, I may look bored or distracted and like nothing bothers or effects me. But look back at the sheer volume of processing that I am doing to understand a “simple” statement. Look at the additional things I am processing – all those sensory experiences that are clamouring for equal attention with each other. Reflect on how every single one of those sensory experiences has an associated thought, emotion or train of questions to additionally process. Think how complicated and painful and distracting and distressing that may feel, how hard I am trying to cope and fit in. Perhaps you know of autistic children that look like they are keeping it together at school and then come home and collapse from the sheer overwhelm? Consider just how overwhelming it actually IS for them. Feel humbled that they can take their mask off with you.
Do you know what would help in this situation when accessing education?
Autism awareness? Perhaps… A little bit maybe.
Autism training that teaches the traits of autism? Absolutely useless in this situation.
Acceptance? That would be nice – but actually you shouldn’t be accepting that a fellow human being is in this state of distress.
Kindness. Absolutely, but ONLY if you know what kindness means for me.
So what would help me most is for you to recognise that I am a fully human, three-dimensional person, with an inner life as complex as the next person’s. I am unique, I am not lesser, or somehow not taking it in, or unable to understand things. Every single human being is unique. I have explained my experience of learning and each of us will have our own unique preferences, strengths and needs. Adapt and respond to every individual. On a practical level, I need very, very simple adjustments:
- An adjustment of attitude. You need to accept that my world and your world could be very different. But each are totally and utterly valid. No amount of adjustments in the form of equipment, support or special adaptations will work if your attitude towards me doesn’t adjust. It’s a reasonable expectation – and a right.
- Start small. adjust the environment based on what everyone needs. Encourage people to sit where they are most comfortable. Near a window, facing a door, whatever.
- We all benefit from regulating our senses. Do we need all those lights? Can we get rid of some of the background noise? Reducing the amount I have to process with some of my senses gives me a better starting point for learning. Having the option to increase sensory input can help too – let me move when I need to. So how on earth do we balance everybody’s needs if we are all different? Remember we are whole people. Maybe I don’t like noise when I am working but you do. You like lots of light and I hate artificial lights. So I wear my headphones and you sit by the window. Autistic people are frequently great practical problem solvers. We can help each other. And as a whole person, I recognise that my senses do not work in isolation. If I cannot control the noise, I can regulate my other senses, it still helps. If I am autistic and have got as far as being sat in your class, I will undoubtedly be a resilient person with extensive experience in handling adversity and distress. Ask me about me.
- Please answer my questions. If someone is bold enough to ask, they clearly want to know. Do not assume that because it is not important to you, it may not be important to them. You may be enabling them to continue a train of thought that would otherwise derail.
- Allow students to photograph or record lectures. That way they can replay them or feel comfortable in distracting themselves or regulating themselves when they need to, without losing track.
- Recognise different learning styles. I absolutely must have information in the right order so I can build up a picture. Some students need to do things practically, others prefer listening. Recognise your own biases if you are a teacher. I stayed away from describing learning styles in depth in this blog, because it is more important to focus on each individual’s needs.
- Lack of understanding does not mean lack of intelligence. Ability in one area does not mean ability across the board. Difficulties in one area do not mean difficulties across the board.
- Ask people what they need. Ask in a way that is practical. If you say “what do you want?” It might sound inclusive and as if it is offering me choice, but how do I narrow down what the options are? The question is too big. Instead ask me which is preferable between option a and option b. Learn from the experts – the ones with lived experience.
- It can take me time to process things. I may have a question about something you said five minutes ago or five days ago. Build in time for this and make it perfectly acceptable to ask. It does not mean I am slow or not paying attention. Remember how much extra stuff I am processing just by being in that room. If you ask me something, give me time to process it. Don’t ask me again but in a different way because you assume I haven’t understood. You will double my processing, not reduce it.
- And remember that each of us has a life full of past experiences that will undoubtedly have played a part in how we feel today. Stepping into situations that highlight our struggles is a risky business. Respect that.
I haven’t been back in a classroom since. I left the course deeply disappointed. I was the child whose parents were told when they dropped 4 year old Emma off on her first day of school – already reading and writing – that she was destined for Oxbridge. It never happened. I have a photographic memory and love learning so sailed through my GCSE’s with no effort. Two attempts at A level courses and two attempts at a degree – the second attempt lasting less than an hour! None worked out for me. I found employment and worked my way into a successful professional career. I even completed a MA successfully via distance and work based learning. I am writing this blog to share some insights that may help people. I also need to process what all this means for me as I embark on my PhD research. Again by distance learning, but this time with me owning my autism and asking for support and understanding upfront. My research is about employment and neurodiversity. Unlike education, the world of work is a place I have largely thrived. But for many autistic people that is not the case. This is where I hope to use my positive experiences to change things for other people.
My son started playing an online game called Clash of Clans, about two years ago. He had his first mobile phone and he and a few mates downloaded it.
We had a good talk about online safety and set about learning how to “chat” with other players. In fact I googled a list of text speak and abbreviations so we could decipher all the BRBR’s, CoC’s, and TIA’s.
But the chatting bit wasn’t for us and he convinced me to download the game too and join his clan. I thought it was a good idea so I could a) keep an eye on his safety and b) ‘get down with the kids’ – LOL – and find out what the attraction was with gaming.
Then there was c). Unintentionally I found I quite enjoyed playing, and it provided lots of opportunities for mother and teenage son chats about life, the universe and everything.
The game involves starting from scratch with a base that you can gradually build up with troops of different types, and defenses and resources. You take part in battles and as you win more loot and gain more experience you can upgrade your base and all its various archers, giants, wizards and dragons. You win more money and increase your magical abilities. You can spend your resources however you wish and shape your base accordingly.
And being a game, once you have accumulated enough experience and resources, you can level up. And with that comes tougher opponents to battle and higher stakes.
It’s very much like life. My son mocks the players he refers to as “rushed”. The ones who use real life money to upgrade their weapons while they are still novices and learning their battle skills. They are easy opponents to beat. Their bases look flashy with all the newest kit, yet weak and simple to penetrate and win an easy victory.
It’s a strategy game too – just like life. You can run at your enemy willy nilly, throwing your best bombs and shooting your best arrows and sometimes you’ll taste victory. Or you can plan and strategise and choose your battles and sneak in and win that way – or do all that right and step on a hidden bomb and lose!
There are no sure fire ways to win every battle. Preparation is important, but no amount of preplanning and picking your best troops will predict your next battle. My son and I often discuss strategy and technique, and the various analogies our game playing has with life. As a respected level 3 Master who reached those impressive heights with no cheat codes or spending of actual cash, I am worth listening to!
As an autistic person I frequently like to do things in the same way each time. It provides me with much needed predictability in this chaotic world I find myself in. It means I am wonderfully reliable, solid and consistent. It also means I can be metaphorically shooting my level one arrows when I’m fighting level six battles.
I still have my favourite old attacks and defenses now I’ve leveled up, but I have to ensure I adapt them to a more sophisticated opponent. If I keep on using my winning strategies from my early playing days now I’m in the Master league, I’ll look amateurish and rarely come out on top.
But I like my winning strategies from my early days. Life was simpler and enemies easier to predict. I want to keep using those winning moves. They served me well. They got me where I am today. Without them I would not be here now. But they don’t win me many battles anymore.
I’ve levelled up.
I need to learn new skills and different moves.
My son and I talk about how as autistic people this can feel tough. It’s like starting again from scratch each time we level up in life. Much harder than a computer game.
But with it comes new techniques, more resources, fancier strategies and greater opportunities.
We may be prone to keep on doing things the same way regardless. Sometimes I’m asked why I do things in such complicated ways, or why I always do things the way I do even if it’s not that effective.
Partly its the old message of “try harder” taken far too literally. Partly it is because it works – or rather it worked. But life sometimes moves on whilst I’m still doing the same old thing.
Sometimes I level up in life and don’t upgrade my skills in line with my progress. Mostly it is because it takes lots of conscious effort to work things out. There is always a logical reason for why we do things. Why change that? Doing things the same way is predictable and introduces a comforting, familiar pattern into an unpredictable and ever changing world.
We should be as proud of our life achievements as we are of our gaming ones. Finding that the old techniques no longer work could be a sign we’ve gone up a level. New opportunities are open to us and new resources are at our fingertips. It’s worth trying out some new moves.
I am fed up of being autistic today!
I have no energy for masking at the moment and know that this means I will either appear totally unstable or I’ll muck up everything I have worked so hard to create.
It makes me want to give up as there seems no point.
Situations remind me that no matter how hard I try, how well I mask, and how fantastic my skills are – I am still really crap at being a neurotypical person. But I’m not neurotypical so why does it matter?
Because autistic people are not valued as whole people. My skills can be appreciated but the rest is still measured in deficits.
People assume I want to be more normal, or I’ll somehow learn to fit in. I don’t. I won’t.
I want the whole of me to be appreciated.
I often find neurotypical people dishonest, vague, inconsistent and tricksy. I still love many of them though. I accept I find those aspects of their persona difficult and confusing. I may not even like how they do things sometimes. Perhaps they occasionally annoy me. But I still love them and wouldn’t dream of writing them off as lesser, or as a broken version of me.
We are all perfectly imperfect human beings.
That’s why I’m fed up of being autistic today. I’m tired and overwhelmed and have no fight left. I get more tired anyway because my brain does so much more processing. On top of that I have to put all that effort into fitting in so I’m allowed to have a go at normal stuff like work and friendships.
My brain rarely rests. My body is usually alert to danger and ready to react.
Most people don’t realise this, and when I end up having to tell them so they’ll stop unintentionally hurting me, I feel humiliated and reminded of how the world is not designed for me.
That’s why I’m fed up of being autistic today.
So I’m taking it easy. I’m cuddling my dog. I’m taking care of myself and hoping tomorrow will feel better.
Self-care is the only way. I have a capacity for joy that others may never achieve. I seek out those sounds that reset my soul. I notice the patterns the rain is making on the window and trace each tiny droplet until it has my full focus. I read those comments that remind me I am not alone. I move in ways that reminds me I am in here – I have a right to be alive.
I rest, I recharge. I don’t plan my next battle. I remind myself that this neurotypically biased world is not of my making. I look at the birds and the trees and I reflect on the words of Mary Oliver. I remember where I belong.
A new expression has entered our vocabulary since so many of us have been working from home.
The BBC shared some thoughts on what this is, and why it happens in a recent article:
Simply put, “video chats mean we need to work harder to process non-verbal cues like facial expressions, the tone and pitch of the voice, and body language” according to Gianpiero Petriglieri, an associate professor at Insead. Paying more attention to these consumes a lot of energy. “You cannot relax into the conversation naturally,” he says.
Many of us will also spend time awaiting calls; ensuring our technology is working; and that there are minimal distractions. This can add layers of anticipatory anxiety and stress to an already energy sapping process.
According to Andrew Hines, assistant professor at Dublin University, and PhD candidate Phoebe Sun; we can improve our video call experience by scheduling shorter meetings. A lot of what determines how fatigued we become is based on what we are listening to.
The voices transmitted through the internet in real time are unedited and therefore crude to our ears. That is why we can wile away an hour listening to a podcast interview but feel drained after a video meeting – even if we didn’t have to contribute.
Their article describes how subtle sounds such as key tapping and swallowing sounds will be captured and amplified through our laptops or other video call making equipment. Squeaky chairs, eating crunchy snacks and slurping coffee can sound to the listeners as if you are chewing in their ears. Our brains respond to annoying, unnatural and unexpected sounds and force us to focus on them. The ability to filter out information is significantly reduced due to the lack of spatial cues and the loss of our ability to recognise the direction of a noise.
Network delays can cause speech; gestures; and meta-communication – all those “Mmmm”, “Uh-huh” and nods of agreement, to become out of synch. Again, this adds to the video call experience being exhausting.
So what has this got to do with autism?
I enjoy writing about shared human experiences. From my very first blog back in March, I recognised the parallels the social impact of the Covid-19 pandemic may have with some autistic people’s everyday experiences.
I am sure that those of us taking part in frequent conference calls will understand the phenomenon of “Zoom Fatigue”. Those of us who are also autistic may well draw analogies with our usual face-to-face social interactions. I’d like to share my personal reflections on this to offer an insight into a world you may not have considered…
When I am in a face-to-face meeting I experience all the same challenges as many people do on a video call:
- I cannot filter out background noise or recognise spatial cues.
- My hypersensitive hearing causes me to focus on all those annoying breathing noises, the slurping of drinks, and the screeching of moving chairs – with equal intensity.
- Awaiting meetings is stressful. This anticipatory anxiety boosts my already high levels of sensitivity even higher.
- Eye contact feels overwhelming and painful. But unlike a video call, I can’t slap a post-it note across someone’s face to avoid looking at them!
- My brain processes visual and auditory information at different speeds which can cause difficulties and a lag in my understanding.
- Knowing when it is my turn to speak takes effort.
Is it any wonder that I am so exhausted after ‘normal’ social interactions? My challenges aren’t because I dislike people, or I don’t understand the rules of conversation. They are processing issues.
What helps is the same courtesy and good humour we have on conference calls. And an awareness that this may feel as clunky, awkward and never-ending to me as many of those video calls do!
I could have explained exactly how I experience the world from the moment I could talk. In fact, I frequently did! The trouble was, my world, and my normal was not the normal of my typically developing peers. In the 1970s and 1980s, autism wasn’t really mentioned – and certainly not in relation to girls – particularly those who were academically bright and able to just about pass off as normal enough to get by. Well, normal enough for adults to not have too many concerns. My peers on the other hand could spot my autism a mile off! Neither they, nor I, knew there was a name for this – we all just knew there was something fundamentally different between the way I experienced the world and the way they did. No amount of masking my autism or trying to fit in was convincing enough to others to prevent them from noticing, and deep down inside, I always knew there was something different about me too. It took many years and many misdiagnoses to find out what that fundamental difference was called.
There are pros and cons of having a formal, or medical diagnosis of autism. For me, I already had some diagnoses. I disagreed with many of these, or felt they didn’t describe the full picture. I needed to get the right label, to slap firmly over the incorrect ones. For others, a diagnosis is not necessary or needed, or even wanted. I can’t say a diagnosis in itself, has opened up support or opportunities, or in any way practically advanced my life, but for others it certainly can. However, the freedom to accept myself following my diagnosis has changed my life. Deciding to seek a diagnosis is an entirely personal choice and I believe that anyone who looks at the diagnostic criteria or listens to an extensive range of first hand autistic experience and honestly thinks to themselves “that’s definitely me” is autistic. A formal diagnosis is a label or description of something that is already there. Good people who always accepted me remain good and accepting. People who didn’t listen or even try to understand, remain unchanged.
My diagnostic assessment was based upon the DSM-5 criteria. (The Diagnostic and Statistical Manual of Mental Disorders.) My thoughts on whether autism is a mental disorder (it isn’t) or whether an assessment based upon deficits is the best way of assessing whether someone is autistic (it isn’t) are irrelevant in some ways. This is the standard way of assessing Autistic Spectrum Disorder and getting this changed is a battle for another day. I will use this blog to look at the assessment criteria and describe what is going on for me when it comes to each of these manifestations of autism the clinicians look for when making a diagnosis.
The particular ways I demonstrate my so-called deficits aren’t that important. What is important is that people understand the diverse range of ways autistic people show or hide their autism. I will explain what is going on underneath the surface of some of my presenting behaviours. Each autistic person is different so I speak only for myself.
I have learned how to understand people and situations and have tried to study and find a script for every possible scenario that may happen on earth. This is clearly impossible and also extremely exhausting. I have learned to script conversations in my head and I am constantly second guessing what may happen. I understand body language – I can use my hands to add emphasis to a point I am making, I understand which words are appropriate to use in which contexts, and I have lots of stable and respectful relationships – but only within very strict frameworks like relationships with colleagues or family, where the boundaries are clear and expectations are laid out up front. Put me outside of my comfort zone where I have no script or framework with rules to refer to, and I struggle big time.
Of course, trying to take my scripts from one context to another doesn’t always go smoothly – no wonder I may use stereotyped speech or avoid social situations. As a child I would appear incongruously grown up for my age and talk like an adult. This was like handing my typical peers a double edged weapon to hit me with. Not only was I weird, but adults thought I was very grown up for my age too and my peers assumed I was showing off. Both things were worthy of teasing, bullying or disdain. Responses that further hindered my ability to interact with others and ate away at my self-esteem. I’ve got quite clever at using my scripts, I know how to add variety and ask open questions so that people talk about themselves. I can see patterns and go for a close match in conversation, rather than repeating the same conversation I’ve already had with someone. This has helped me build relationships and the more comfortable I am with people, the less self-conscious I feel. I don’t need to put as much energy into getting it right, and the conversation begins to flow naturally sometimes. Learning things in this way means I can give and take in relationships – it may feel clunky or robotic at times but is my best effort.
I’m certainly a caring person, so why the problems with emotional reciprocity? My interoception – or knowing how I feel inside, is frequently muted. The processing speed of my emotions is typically very slow. Have a read about my experience of empathy, it will explain this in more depth.
When I am having a conversation with someone, I am concentrating hard to understand what they are saying, to read their body language and work out the correct response. If this is someone I don’t know well or who uses lots of sarcasm or vague language, I have additional processing to do. I don’t get a gut feeling about things, I have to use logic to work things out. Very often I don’t really know what I like or dislike. This means that if someone tells me something about themselves e.g they experienced an accident, I know that I should say something sympathetic and not just ask lots of questions to seek clarification. But do I actually feel anything about their experience at that point? Well, no.
Later on, when I have had a chance to process what they told me, I can begin matching their experience to my own experiences to see what I think and feel about it. I might think then that their accident sounded awful and I may consider how I would feel in that situation. In my head I am looking for a pattern to match their experience to so I can understand it and say the correct thing in response. Too often, I get this wrong and what I believe is empathy, actually looks like I am making it about me and invalidating the person’s experience. Or it may look like I am not genuine, because my emotional response is delayed. I did ‘feel’ bad about the aforementioned accident, just so much later it would have looked weird if I had shown it.
This means it is often easier to avoid relationships because they are hard work. I don’t come across like typical people. I can offend people or appear to be self-centred or only interested in my own hobbies. I know this and try my best to not be like it, sometimes it’s easier to just avoid people rather than get it wrong. Not having a sense of liking or disliking things and people means I don’t necessarily get a lot of reward from relationships.
Small talk is tricky. It is full of statements that are not meant to be taken literally. “How are you?” is not meant to be answered honestly. To play along with the rules of small talk feels wasteful and dishonest to me. I appreciate it is part of what neurotypical people do to make their social interactions work – I view it a bit like when animals ‘play’ but are actually practicing asserting their dominance or place in the pack. I don’t really know why it is valuable in humans when they have the self awareness to just get on with being honest and not play games – it is not valuable to me. I would rather get straight to the point. It is like the foreplay of relationship building though, and by finding it difficult and avoiding it, it means I am less likely to get to the stage where relationships feel meaningful. The meaningful relationships I do have tend to be long lasting, loyal and strong. I have no difficulties with them at all.
Social interactions are also affected by my sensory processing. Eye contact in particular, involves masses of visual processing. My tactile aversion is triggered because if I am close enough for eye contact, I am probably close enough for touch. My sensory processing works very differently to my typically developing peers. If I am having a conversation, I will be consciously processing all the aspects of social contact I have just described, as well as the smell of the person; the sounds I need to focus on and the sounds I need to ignore; plus my proprioception and the need to stand or sit still, use my body appropriately to make the correct gestures, and adapt my tone of voice.
I may give the impression that I don’t socialise much because I don’t like people – not true. Or because I don’t understand how to interact – definitely not true, I probably understand it better than many people. I can’t see where the deficit actually lies. In fact, maybe it isn’t a deficit – I am genuinely having to process much, much more than neurotypical people have to process when interacting socially. No wonder it’s difficult!
I have touched on why I may be repetitive, and also on how my sensory processing is very different to that of my typically developing peers. When you begin to understand how my brain processes sensory information and how some of this is muted, and some of it is so intense it is painful, or so distorted it is not recognisable as being like that of my peers, you may get a feel for how challenging my world is to live in.
My need for predictability and routine becomes easier to understand. Rituals bring an added sense of control and familiarity, and repeating routines enables me to have some sense of being able to influence what is happening inside and outside of my body. My world is not predictable – my sensory processing fluctuates depending on how much I am having to process externally – e.g. in busy environments. Or internally – e.g. an illness I may not be feeling, or bodily functions I have to mentally search for in order to notice. Repetitive actions in themselves may feel very regulating or soothing to my senses, which is why I do them more when feeling under pressure.
Others may view my reactions to sensory input as hyper or hypo reactive. Believe me, my reaction is perfectly proportional to the reality I am experiencing! My unusual sensory interests are perfectly normal to me. I find it unusual that other people don’t hear music in colour or are so preoccupied they miss all the beautiful tiny details in nature that I see, hear and smell.
I am able to focus on subjects that interest me with an intensity that many others don’t possess. My lack of interest in what I perceive as an unnecessary focus on hierarchies and conformity in society, means I choose whatever it is I like to be interested in with an open mind, and frequently approach the subject in an innovative way. My interests provide me with consistency, predictability, and an escape from the stresses and strains of life. They enable me to be good at something in a world where I am frequently seen as deficient. They are a safe ‘go to’ when I need to place my mental energies somewhere.
Pretty self-explanatory – and a good test for anyone considering whether they are autistic or not. My autism was present before any of the other factors that shadowed me getting the correct diagnosis.
My functioning is impaired when I am in environments or communicating with people that are not accommodating of my autism. I thrive when I am in environments where my needs are met. My autism is exactly the same, I haven’t suddenly developed social ease or typical sensory processing. Of course, a medical diagnosis will be based on the medical model and not a social model of disability or illness. I always process the world in an autistic way. How big a problem this is depends on more than just me. It is up to you too.
Receiving a diagnosis has been positive for me. I understand my life experiences, challenges and strengths much more realistically. I feel able to be myself and I have more confidence. I hope that autistic people are listened to more readily, so that future diagnostic criteria for autism focuses on authentic autistic experience, and not just on how this looks to non-autistic people.
The examples I have given are my own personal ones. If any autistic people wish to add their own examples to the comments section, I would love to read them. Every person is different. The diagnostic criteria is based upon the manifestations of a person’s autism when it is observed in a non-sympathetic environment, or by professionals working within a system which views their own particular experience of the world as normal. I find the focus on deficits hurtful. I have spent a lifetime feeling deficient – and now its official! I don’t view myself as defective, and neither do other people who know me. Whilst the medical focus is on what autistic people can’t do, progress towards acceptance and understanding of autism will be hindered. And certainly there is no way of truly valuing us. I do not believe it is as simple as turning the deficits approach to diagnosis into a strengths based approach. I do struggle with things. We do live in a world where the majority of people are not autistic so that will inevitably mean I am different. Every autistic person will have different strengths, in the same way as they have different challenges. We are all unique. In the future, I would like to see clinicians developing an understanding of “why” and not just “what”. This will ensure that people who slip under the diagnostic radar due to their ability to mask their autism or who don’t fit the stereotypes will be able to be taken seriously when contemplating a diagnostic assessment.
I was diagnosed by clinicians who understood “why”. Their approach towards me was compassionate and interested. I was not made to feel deficient. I am not convinced that all clinicians understand the “whys” behind an autistic person’s presenting behaviours. Please share this article with whoever you feel needs to read it.
I’ve heard this said quite a lot – particularly since my diagnosis. Firstly I’d like to say “Thank You” to the people who have said it. I mean that sincerely. This has been said to me when people have been empathising, or trying to relate to my situation – it has even been said to soften the perceived blow of having a ‘disabled’ child. I am heartened that people want to put themselves in my shoes and I hope they bear with me and read this blog; reflect on other ways they can show their solidarity, and continue in their commitment to understanding autism.
Receiving a diagnosis of autism is a complex process. The diagnostic criteria is based upon clinicians identifying certain traits, experiences and behaviours, and all sorts of biases may come into play. This may be why certain groups of people are under-diagnosed or misdiagnosed.
In my opinion, the assessment criteria for diagnosing autism is based on stereotypes and deficits and could benefit from being updated. People who don’t fit those stereotypes, or are skilled in adapting to their atypical experiences of the world can easily be overlooked. However, there are some skilled clinicians out there that understand “why” autistic people do what they do and they are able to delve deeper and unpick all the various complexities of the person’s experience and identify whether autism is in fact the correct diagnosis.
Whilst every autistic person is unique and completely different to the next autistic person, we all have one thing in common. We have always been autistic. Autism is lifelong. No one becomes autistic as an adult, and there will be evidence of autism right from the very start.
So are we all a little bit autistic?
No – we’re not. But we do share some experiences and behaviours. There is plenty of stuff about autism that is relatable to people who aren’t autistic. That’s why I enjoy using analogies to share my experiences.
If I described my atypical sensory processing, sensory overwhelm, and my need for adjustments in a scientific or medical way, it’s likely that you might see me as very different from you. That’s ok – I probably am. But if you can relate to a scenario such as this one then you may begin to ‘feel’ what it’s like for me as well as understanding why I’m different.
Picture this: You’re driving around in your car looking for a parking space and it’s raining, the radio is blaring out, the heater is on and you’re way too hot in the car. You’re thinking about that appointment you need to attend and what you’re going to say, and you’re not sure if you’re wearing the right clothes, and you can’t see an empty parking space. The windscreen wipers are swishing back and forth on maximum speed, and even though you are leaning forward and screwing your eyes up, you just can’t see where you can park. It’s all beginning to feel a bit much. So you turn the volume down on your car stereo and turn the wiper speed down – suddenly it becomes easier to find that parking space. You’ve done nothing to improve your vision, or the parking space detecting ability of your eyes, but the drop in volume means the overall processing your brain has to do of all that various sensory information is reduced and it becomes easier to focus. That’s similar to the level of overwhelm I often feel and why I need to have peaceful, calming environments to live in.
If you find that scenario relatable it doesn’t necessarily mean you’re autistic – but it demonstrates that all our senses work together and reducing input in one sense when we’re becoming overwhelmed may prove beneficial. It also demonstrates that when we are under pressure, sensory information may feel more acute or distressing. It gives a feel of what my ‘normal’ feels like and when people understand that, it is more likely they’ll be compassionate and accommodating rather than seeing me as ‘different’ or ‘other’. If they bump into me in town and see me starting to “look like a meerkat” as my husband and son (affectionately?!!) refer to it when I have to go into a big shop with all the lights, temperature change, music, smells and escalators, maybe they’ll not think “look at that lady acting weird, standing tall and alert like a meerkat on guard duty” but “I wonder if she is finding this overwhelming like I do sometimes and what can I do to help?”
So yes, we have things in common. But as I’ve elaborated on in an earlier blog – just because my husband has backache and is tired at the moment, it doesn’t mean he is pregnant. Or even a little bit pregnant. It just means he can relate – and that’s a good thing.
I find this diagram helpful for explaining the autism or autistic spectrum. The spectrum is not linear like the top image, it is more like the coloured wheel image below. I perceive non-autistic people as being a bit obsessed with hierarchies and linear things. I’m sure that individually people aren’t, but our society seems to enjoy ranking stuff – whether that’s a school’s league table or a football league or on a talent show – it happens all over the place. I’m a great lover of categorising things myself, but my default setting is not usually based upon the typically perceived norms of what makes one thing better than something else. It all feels a bit judgmental and you miss so much beauty in the world when you rank stuff and only focus on the “best”.
The trouble with having a spectrum with ‘mild’ at one end and ‘severe’ at the other is it’s total rubbish. Simple. You can no more be mildly autistic than you can be mildly gay. You can’t be severely human. Or a little bit on the French spectrum. It just doesn’t work like that. The characteristics and experiences autistic people share come under various categories and each person is affected differently by them. A person who has no verbal language skills with highly developed motor function will experience the world and be treated very differently to a person who is highly articulate with poor coordination. Each has their own challenges and strengths. Both are autistic and it feels difficult to say which of them is more severely affected by their autism. One can climb a mountain – one can make a phone call. How do you rank that? You begin to realise that the severity is nothing to with the person at all – but is to do with the situation or environment they are in. The social model of disability becomes far more relevant than the medical model we are more used to. The person hasn’t changed but suddenly when other people’s attitudes or their environment becomes more accommodating, they become less disabled.
Personally, I’m not too bothered when people try and relate to me by saying they are a bit autistic too. I have other battles to fight and if I tell them not to say it, I’ll reinforce that I’m pedantic. I want to build bridges between people, but I’d rather they didn’t say it though. I find it a bit annoying because it is inaccurate – and believe me, when your ‘normal’ world feels as chaotic as mine does, you need at least a few things to be ‘right’, ‘clear’, ‘accurate’ and ‘consistent’.
Many autistic people, myself included, have had a lifetime of knowing we are different to our typically developing peers. Some of us have believed – and been told – that we are ill, damaged, or wrong for being how we are. For some autistic people their diagnosis has validated their identity. For me, it has given me the freedom to be myself and the confidence to reject the incorrect labels others have given me or I’ve believed about myself. Some autistic people are loudly proud of being autistic. Hearing others saying they are a bit autistic too may feel invalidating or belittling of the very real achievements autistic people make every day in just getting by in a neurotypically biased world.
Many of my blogs end with a reflection on what we have in common. This is important to me because most of all, I am human. I have every right to exist – regardless of my neurology. My diagnosis has not just validated my identity as an autistic person but as a woman and a human being too. There is something very wrong when people wonder whether they are in fact a true human being – just because they are autistic.
I want to relate to other people and understand how their world works for each of them – I have spent my lifetime doing this and sometimes I try to copy, or pretend to understand so that I fit in better (this can be called ‘masking’ in autism, and I’ve blogged about it). I’d like people to have the same enthusiasm and commitment towards understanding the autistic world as I have towards understanding the neurotypical world. We need to recognise our shared humanity. Seeing people as “other” – whether that is in generalisations like ‘autistic people are like this’ or ‘all neurotypicals are like that’ is a dangerous road to go down. The rise of right wing politics across our planet scares me and we should take heed of what we know about how things like prejudice, stereotypes and discrimination work. Dividing people into “us” and “them” rarely leads to inclusion, equality and peace. In our own lives we can explore how to work together and see the shared experiences and use them to relate to each other better, whilst accepting we are all different and we all need different things. And that’s why human beings are so awesome!