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!
“OK, put your hand on the gear stick, press the clutch down with your foot, engage first gear, slowly lift the clutch and release the handbrake and press the accelerator with your other foot all at the same time” – you’re off.
Easy, isn’t it?!
I find that the analogy of learning to drive is useful for describing how social communication frequently feels for me. Most of us who have been driving for years can do it automatically and even hold conversations with passengers and listen to music whilst taking in the road conditions and anticipating any risks or changing road conditions up ahead.
I’m one of those people. I can get in my car or on my motorcycle, intuitively find the controls and I’m off!
In fact, driving – and riding motorbikes and bicycles – are things I find extremely enjoyable. They are in the very small group of physical activities I can do without needing to consciously think about what to do with my body.
Social communication on the other hand is something that has never become automatic, and I assume that after 47 years of trying, it possibly never will. In a conversation I often feel like that learner driver I once was – awkward, painfully self-aware, and a bit clunky on the controls. I might get the order right, and use the controls appropriately, and get from A to B, but my knuckles are white from gripping the mental steering wheel inside my head so hard!
From a communication perspective I can ‘drive’ well enough to pass my test. Like many learners, I possibly have fewer bad habits than some experienced drivers. I probably know the rules of conversation better than many people – I try to be conscientious, thoughtful and considerate. But just like understanding the highway code off by heart – it’s not necessarily the way people “actually” drive. All those rules you’re meant to break – all those things that we know aren’t “real driving”… These things pass me by, and in communication situations, I often feel like a very competent learner who has passed their driving test with no major faults – but is actually not representative of most road users!
Being a mechanic doesn’t help much with driving either. My understanding of people is good, as is my knowledge of vehicles. I know more than the average person about how engines work, the sounds they make when something isn’t quite right, and the way other people drive. I can competently fix someone else’s puncture or service my own bike adequately – much as I have a good understanding of people and can help other people with their communication skills. This doesn’t help me be a better driver though; either in a vehicle or out there socialising.
When I am on familiar social roads I can begin to take in the scenery and enjoy the journey, but if you were to send me across the channel to where they drive on the other side of the road I’d be floundering. Put me in a social situation I’m unsure of and I struggle. I can do what I do, well. A bit like when I moved from Bristol to West Wales – my pulling away from junctions and roundabouts was far faster than needed and fortunately didn’t result in me rear-ending any of the local, laid back drivers that are used to having plenty of time for manoeuvres.
I can navigate the roads of social communication, but the effort is huge because I’m usually having to consciously work out what to do unless the road is one I have travelled down many times before. I prefer to keep my social journeys close to home and not venture out at busy times or in bad weather. We all find it helpful when other road users use their indicators properly – who hasn’t felt frustrated by someone indicating left that then turns right?! Why can’t people communicate accurately too and say what they mean and mean what they say?
I’ve been able to talk for over 4 decades and don’t fancy highlighting my social struggles with the equivalent of L Plates. I’d rather other people were courteous and gave me space and time to work out how to navigate through social situations safely and at my own pace, on my own route and under my own control. I wish that interacting with people was as straightforward as driving and I wonder why I have never got from that learner driver feeling of everything being conscious and clunky, to where I can just jump in and enjoy the ride?
My son asked me to take him to Tesco’s as he hasn’t been out in public since March. He wanted to know how social distancing works and how our local supermarket looks.
Supermarkets are my biggest sensory nightmare – in fact, when I lay awake in the middle of the night, filled with that particular anxiety that only visits you in the wee small hours; the scenario I play in my head usually escalates along the lines of: “You know that crap thing you did yesterday at work Emma? – Well, you’ll probably lose your job. – And then you won’t be able to pay the mortgage. – And you’ll lose the house. – And you’ll have to get a job in Tesco’s!!!” The ultimate peak of this catastrophising mountain that I create out of a very insignificant molehill almost always includes me internally watching myself experiencing total sensory overload whilst forced to work in a supermarket.
So I mentally prepared myself; made sure I felt regulated and able to cope with the sudden bombardment of sensory information that would hit me and my son; took a deep breath; and in we walked.
It was tough.
I patiently explained; repeatedly, that:
“No they are not deliberately being (insert an expletive of your choice here) – there are lots of reasons why people aren’t following the arrows”
“Some people may be feeling overwhelmed like us – there’s lots to think about – all the arrows, and the 2m distancing and trying to find your shopping – they possibly don’t even realise they are going the wrong way and standing too close to us. I’m sure they’re not doing it to be rude”
But inside I shared my son’s exasperation and was glad that my focus was on making the shopping trip a learning experience for him. It helped me push my own frustration, confusion and fear to one side. Afterwards he said to me “Mummy, I’m glad we did it but I don’t think I’ll do it again”. Inside I thought exactly the same.
If the world is a chaotic, overwhelming and confusing place in the “normal normal”, then the “new normal” is something else to behold if you are autistic. I have created lots of guidelines and rules to follow that help me get by in day to day life. Stock responses to questions; routines for doing particular tasks; time for self-care and self-regulating; almost like an internal cognitive and sensory map of how everything should be. This helps me make sense of my world and function quite well. Without my “map” I would be stuck. Unfortunately, there is another way I can become unstuck, and that is when someone changes everything around. Suddenly my “map” is of the old normal and not the new one.
My brain and body want to operate in the familiar – that is what they are programmed for, but the familiar has gone. Have you ever driven somewhere unfamiliar and relied on a Sat Nav? You experience a diversion due to roadworks or an accident, and suddenly you have to digress from your route and you realise that actually, you have no idea of where you are and how to get back on to your route and continue towards your destination. The Sat Nav keeps ordering you to do a U turn when possible and wants to keep sending you back to that closed bit of road you can’t go down. You can’t re-programme your Sat Nav because you are driving and you have to keep going forwards, not knowing if you are getting nearer to, or further from your destination and as it is all so unfamiliar, there’s no way of finding out.
That sense of being lost happens to me frequently. If I didn’t programme my social “Sat Nav” that tells me how to interact with people appropriately I’d be constantly lost. If I didn’t “map” how places should look, smell and sound I’d have no idea if I was in the right place, doing the right thing.
Other animals use “maps” too. My dog’s map is very definitely based on smells. She recognises when other dogs have been on “her” favourite walk, and she often indicates to me where a fox may have crossed the track and is very helpful in identifying potential sites for my trail camera.
Migrating birds are able to sense the earth’s magnetic field and that’s how they can return directly to the same summer and winter destinations every year without fail. Humans in fact have the same physiological adaptations as these birds, and I wonder whether that’s why some of us have a better sense of direction than others – perhaps the sense of magnetoreception that is found in some other animals is present in humans too?
All humans use our senses to help us know where we are in the world. But senses don’t work in isolation – they are closely linked to our memories and emotions. Perhaps your child cried their eyes out when you washed their favourite cuddly toy because it didn’t smell right anymore. Maybe the taste, smell and texture of rice pudding takes you straight back to your school days and the dinner hall and all the associations you have with that.
Autistic people often have atypical sensory processing, which means we may need more or less sensory input than other people do. We can be hypersensitive and experience a normal television volume as deafeningly loud or we may be hyposensitive and not get dizzy from spinning round as fast as possible on a roundabout. This sensitivity varies from person to person, sense to sense, and moment to moment, and often becomes more extreme in times of stress, when adrenaline kicks in and starts triggering that fight, flight or freeze response we all get from time to time.
I expect places to smell, look and sound a particular way. I need them to, so that I know how to interact with them. When things change, I feel unsafe because the predictability and familiarity has gone. My map and rule book may as well be thrown away and I have nothing to replace them with. That is why I can become overwhelmed in certain situations – it’s not about disliking change, or needing routine because I am some type of control freak (and with a nod to any control freaks reading this – I personally can’t see why being a control freak is such a bad thing anyway!). I can only function by preplanning how to do things. Knowing what to expect is a great help with this. Whether that is planning a routine for my day, or having an agenda for a meeting in advance, or rehearsing in my head how to handle a situation – it all helps me function and thrive. My sensory “map” helps too.
Sense of sight.
I love that I spot the finer details that others miss – like the hairs on these newly unfurled beech leaves. I can proof-read written work quickly and accurately because mistakes jump out at me. Unfortunately, this also means I can’t ignore or tolerate things that are out of place. Someone else rearranging my things very slightly, does not annoy me because they look a little bit different. It annoys me because they look completely and utterly different and like a totally different thing that I have to learn about from scratch all over again! In these Covid 19 times – if you wear a face mask then you don’t look like you and I will probably not recognise you. I am the person who thought she had a new colleague at work and went through the painful small talk and introductions process a second time with someone I had already done it with – they had just had a new haircut that’s all!!!
This is the sense I am currently struggling with. It is a sense that connects straight to our emotions. People smell different at the moment and this is unsettling. They are leading different lifestyles (maybe they are working from home, have changed their diet, are exercising differently and have different stress and other hormones raging through their bodies). They smell more strongly to me because I’ve got used to avoiding them! This double whammy of ‘different’ and ‘stronger smelling’ makes going out feel very overwhelming. When people smoke, and wear perfume/aftershave then it all becomes too much to process and I feel myself switching off in order to cope or becoming so overwhelmed I can’t think or talk in words.
Although my house is rarely quiet – I have a teenage son who enjoys making a lot of noise at times. I can control the amount of noise coming in to my ears and brain, to some degree. I can wear my noise cancelling headphones and the noise in my house is fairly predictable – although the thunderstorm the other night made me almost jump out of bed! In town, the noise comes at me from all angles. Sudden alarms; shouting, laughing and talking; traffic noise and so on. The cacophony of noise is like a solid wall of sound that hits me full on and I can’t distinguish the bits I need to listen to.
My other senses are also affected by the “new normal” and its not a specifically autism related issue. Plenty of people are finding car journeys are making their children feel travel sick – normally they are fine, but they’ve got out of the habit of traveling in a moving vehicle. Many of us are enjoying the peace and quiet; we’re finding the reduction in social pressures has been a relief and a break from the high intensity lives we often lead.
Many of us will find the lifting of restrictions challenging and they will take some getting used to. All of us have different sensory preferences – regardless of our neurology. Some of us will find the fluorescent lights in shops way too bright and distressing when we start visiting towns again. Some of us will feel anxious when travelling because everyone seems to be driving so fast. On top of this are the social distancing rules – and the way they change, and some people disregard them.
I am taking this step by step. The sensory processing aspect is difficult for me – I’m dreading the day we are allowed to hug people again – what if someone wants to hug me and I flinch? What if they touch my bare skin, and they smell of perfume and I can feel their breath?!!! I don’t want it to be noisy and bright and smelly. I want it to be the same and predictable and familiar and I think I’ll stay in and just go on the internet and write, and message my friends from a safe distance! I can’t predict how this “new normal” will look and I’m out of practice with doing people things. When I do interact with people I remember why I find it tough – they overstimulate my senses, and confuse my brain with their inconsistent rules, they have hidden agendas that I don’t intuitively understand and I am reminded at how I’m just not very good at being a normal person! After spending time away from my own little world at work or visiting a shop, I am exhausted.
But I will continue with the self-care and show myself the same compassion I have used towards myself throughout lockdown. I am not alone in feeling anxious and overwhelmed about this. I am relieved the restrictions are being lifted little by little. I can get used to the “new normal” little by little too.
The kindness and positivity seen in society at the start of lockdown has appeared to shift into anger and disregard for others. I hope it is just because people are fed up. Maybe everyone is scared by the changes? As lockdown eases, I am glad that I have coped and got this far. The world is going through unprecedented times and who knows what will happen next. I have learned so much about myself and how resilient I am and what I need to do to take best care of myself and family.
The bits of lockdown that I have most enjoyed, I will continue to do. My Saturday morning baking, my walks in the woods, the friends I message and spend time online with. I will continue to write the blog that I started in lockdown, and I will continue with being kind to myself and others.
So we didn’t run out of toilet paper after all then!
I wrote my very first blog about autism 14 weeks ago in response to the approaching restrictions that would be needed because of Covid-19. It was quickly picked up by a variety of autism organisations and groups, and I watched what was a speedily written and personal reflection on the situation, quickly become a recommended read: https://undercoverautism.wordpress.com/coping-with-the-anxiety-of-coronavirus/
I recognised how my autism could be an advantage for coping with the reduced socialising, the working from home, and for coping with high levels of daily anxiety and uncertainty – all things I am skilled in managing everyday. I also recognised that the changes to my lifestyle as a result of coronavirus might feel scary, the new rules may be difficult to interpret and understand, and that everything I had learned off by heart in order to cope with the “normal” world may have to be relearned in order to cope with the pandemic situation.
It’s now midsummer and I have continued writing blogs and have achieved on average one a week throughout this time period – I have had a productive lockdown in terms of written output and I am humbled, shocked and delighted at how widely read my writing is. Not just my autism and wildlife blogs, but my local newspaper column, some recent memories I’ve shared for a wildlife trust project, and my employed work too. This past week I have seen an article published in the British Institute of Learning Disabilities Good Autism Practice Journal and I’ve helped produce a support pack for families affected by autism in my local area in West Wales. This is beginning to sound like a job application or a CV – it’s not meant to be! It demonstrates how useful it is to have a hobby and an outlet for expressing myself. I’ll come back to this later in my blog.
Like everyone else, we are beginning to consider what a “new normal” may look like and I need to prepare for that too.
Back in March I thought about how important it would be for me and my family to develop a routine that suited us, and replaced our previous routines. I’ve described why this is important for us and how we did it in some of my other blogs, but I’ll describe it here as briefly as possible: My world feels quite chaotic because my brain processes information (including sensory information) in an unfiltered and non-discriminatory way. This means that I need to impose my own sense of order, predictability, and my own routines and ways of categorising, understanding and coping with this information. If I don’t, I become completely overloaded and overwhelmed and unable to function.
At the start of lockdown I saw lots of posts on Facebook about how people were going to learn new skills, do up their homes and gardens, teach their children, and take up hobbies. I loved that it was ok to have hobbies again! When I was growing up it was far more normal to have hobbies and it was even ok to have slightly unusual, obscure or nerdy interests. There is a great deal of satisfaction that can be gained from having a hobby that distracts you, brings you respite from day to day life and enables you to immerse yourself in it to the exclusion of everything else. You don’t even need to be good at it to enjoy it! Many autistic people find their interests can be all-consuming and whilst this may bring them immense personal pleasure, it can appear single-minded, obsessive or even boring to other people. Tough, I say. It’s just how we do things.
However…. I am aware that as well having the valuable skill of being able to hyper focus on things that interest me, I can pursue something single-mindedly in pursuit of truth or deeper understanding, to the exclusion of other people’s needs or my own wellbeing. For me, this is particularly likely to happen at times of stress. The chaotic world I normally live in has suddenly become even more chaotic as a result of Covid19, and I can feel my need for logic, order, understanding and, “for something to just be the fucking same as it was last week!!!” has increased massively. I expected this and set myself 3 rules at the start of lockdown. Here they are:
I will brush my hair every day even if I don’t want to and even if I’m not going anywhere. (I dislike brushing my hair because of the way it feels. I often rub the back of my head on things without noticing and have had a lifelong tendency to develop a big knotted mass of hair on the back of my head. This makes ‘horrible hairbrushing’ even horrible-er!)
I will have walks every day. (This is essential for regulating me and for maintaining a routine)
I will keep my interests broad not deep during the Covid19 pandemic. I will not pursue anything related to politics, health or inequality as an interest at the moment. (The last thing I need to do at times of stress is go off on one trying to change the world when I quite clearly can’t)
That’s it. Not particularly difficult rules to follow and I have been quite successful. The only rule I broke was the one about walking. Unfortunately I was very unwell and unable to get out of bed for a week. I may or may not have had coronavirus but I needed to visit the hospital and was discharged with a letter stating I had possible Covid19. This was in March and tests were only being offered to inpatients. I was treated in the Covid treatment centre which was a big tent in the local hospital grounds. It was the worse sensory experience I have had in a very long time. It was bright, white, incredibly noisy with fans and bleeping machines, and no one acted or looked like a doctor or nurse normally does. I also felt quite unwell and thought I might die a couple of times. So in true “me” style I wrote a blog:
I needed people to understand how the world is for me just in case I died. I also wrote an additional nature column for my local newspaper about seeing the natural beauty in the world and why we should be kind to each other. I felt I needed to leave no unfinished business, just in case. Then I tried writing about Red Kites – I’ve been following a breeding pair in a blog diary. I couldn’t finish that blog and ended up in hospital. That’s how I knew I was really ill. I never like to leave things unfinished.
Fortunately I recovered and was able to discuss some of this with a lovely learning disability health liaison nurse who worked with her colleagues to develop easy read documents and a film about the hospital experience at the moment. I also wrote some tips for autism wellbeing that we shared so that people would know that it could be useful to take things like sunglasses, noise-cancelling headphones and other objects that they find useful for regulating their senses if they had to go to hospital too.
I am not fully recovered and have days where my chest is still tight, my breathing is difficult and my cough returns. I also experience tiredness like you could not believe. For me to stay indoors and not have a few walks every day is almost unheard of. I used my time in bed that week to learn a new skill – making an app. And to overcome a lifelong challenge. This is quite astounding, but needs must, and I was about to withdraw my PhD application just because of my phobia of being on camera. I’ve blogged about this too . With the help of a friend I was able to get myself from not ever imagining I could be on a video call, to making several training films where not only do I show part of my body and speak, but it is recorded and shared too! I now recognise the image in photos and mirrors as “me”. Something has clicked inside of me and I have a sense of recognising myself and a connectedness between my body and my mind. This has been a big achievement and essential in some ways – how could I have got through lockdown as a working person, without being able to take part in a conference call?!
Working from home suits me and my role is in the background of all the dedicated key workers out there supporting the most vulnerable people in our society in their homes and care settings. My job has enabled me to neatly compartmentalise my time spent thinking about Covid19 into my working hours. I have been involved in risk assessing the workplace and keeping abreast of the pandemic situation and communicating about it. This has helped me control the urge to become an expert on coronavirus – I watched many people at the start of the pandemic get caught up in learning all they could about the virus. I’m the same – I process and accept things by analysing and understanding them. I can quickly assimilate masses of information and use that to work out what should happen and how it all works. The problem with this very logic based approach is it doesn’t integrate smoothly with the illogical world we live in. I frequently find myself desperately seeking clarity in situations where there is none to be found. I NEED things to have a plausible explanation and be accurate and “right”, and it frustrates and frightens me when they are not. Like I said before, my “normal” world may feel more chaotic than some other peoples because of my sensory processing and this new situation we are in has massively increased my stress and need for order.
I have observed people’s responses to the pandemic and felt astounded at what appears to me to be illogical responses. I have a lifetime of feeling like the character of the little boy in the Hans Christian Anderson story ‘The Emperor’s New Clothes”. Why am I the only person calling out the nonsense before my eyes?!!! I felt confused when people started saying the risks of Covid19 were reduced – even though the figures said otherwise. Lots of people headed for the beach and seemed to behave as if wishful thinking and a sunny day would make them immune to the virus. I have felt frustrated by politics – but not too frustrated. Politics is still predictably dishonest, and full of hidden agendas, power play and unpleasantness – there is always a sense of reassurance in predictability – even unpleasant predictability! I have felt saddened when people have got caught up in arguing with each other about important causes – unable to consider each other’s viewpoints, truly listen to each other and act humanely. But each time, I have had to take a step back and pause and consider to myself: “What is really going on here for me?”, “Am I looking for clarity where there is none?”, “Is this something I can change or is this something for later on?”, “Am I focusing everything on this subject and forgetting that we are living in unprecedented times?”.
My passion for things being “just right” drives me, and the strongest emotion I ever feel in life is the one that I get when people are deliberately dishonest, or misinterpret, or misrepresent me. It rocks my world, unnerves me and makes feel very, very unsafe. In my world, sounds sound different at different times; colours change colour; faces distort; smells fluctuate; my own body comes in and out of focus to the point where I sometimes can’t feel it. People talk in riddles as far as I am concerned. They don’t say what they mean, they are sarcastic and they expect me to ‘just know’ how it all works. My world has never been consistent and I’ve got used to that. When someone deliberately mucks with it I feel very unstable and unsafe. I need to put things right. If a friend has a problem I feel driven to solve it – I have learned that simply listening can be fine too. When I see someone on social media sharing racist propaganda without realising, I feel driven to correct them – but I don’t because no one joins Facebook to become educated. It is an internal battle to keep my mouth shut or my fingers off my keyboard sometimes.
My need for honesty pushes me towards correcting people, but I know this is perceived negatively. I won’t mask my autism by hiding my beliefs and values or acting in a way that is untrue to myself, but I have learned that sometimes it is better to preserve my wellbeing, choose my battles and recognise that other people are different to me. Not only in what they rightly or wrongly believe, but in what matters to them and what their values are too. Some people are not flexible, they are unwilling to see the truth and my need for order and truth does not matter to them one bit. I am always amazed that other people don’t value truth, openness and straight talking in the way that I do. But we are fundamentally different – and that means that they are unlikely to be playing the game of life by the same rules as me! This has been a tough lesson to learn. Much is said about ‘theory of mind’ and empathy and so on with regards to autistic people . There is nothing wrong with autistic people’s empathy in my opinion. I know lots of autistic people and we “get” each other. I totally see why they do things – because it’s why I do things too. I don’t find my autistic friends openness about what they think of me rude, over-familiar or anything other than refreshingly honest and I wish more people were like that. I am well aware that you may think something different to what I think and that comes from our different baackgrounds, neurologies, genetics and so on. I have learned as much as I can about people so that they feel more predictable to me.
The reason that I don’t “get” why a lot of non-autistic people do things and why this isn’t intuitive to me is because I am running on a completely different operating system to them. I function pretty well but I work differently. Think of your mobile phone – lets say it runs on android. Mine is an apple. They both make calls, they both tell the time, they have similar apps. Our phones can do the same things, and apple and android systems have various quirks, and advantages over each other but are still phones at the end of the day. But try running an andriod app on your iPhone. It will not function – ever. They are not the same – an android app will never work on an apple phone. And that is the world I live in. I am not somehow a lesser version of normal, or defective or broken. I don’t even aspire to be “normal”. I don’t need to be fixed, or helped to become more sociable, or more able to suppress the bits of me that are different. I don’t actually want all that. What I want is for non-autistic people to put the same amount of effort into understanding me that I have put into understanding them.
My writing has given me an outlet for sharing my insights and will hopefully enable people who want to understand how autism is for me, and how it may be for some other autistic people, to learn and reflect. I feel vindicated in some ways because I feel like I have a lifetime of not being listened to or heard and I finally have a voice. It is a hobby that can be used with my other hobbies and my passion for the natural world is shared in my wildlife blog http://www.offdowntherabbithole.org
Watching the seasons change reminds me that change is part of nature. It is commonly said that autistic people don’t like change. For me that is not true – and to be pedantic for a moment, I’d say I love change but find unpredictability, lack of clarity, and disorder very unsettling.
We planted cress a few times during lockdown and loved seeing how it visibly grew day by day. We have seen the blue tits build a nest in a hole in the apple tree, visit the nest with food and then fledglings leave and make their way into the wider world. The apple tree itself has grown leaves, blossomed and now has tiny green fruit that are starting to develop a red blush, since I wrote my first blog. We ate carrots for dinner earlier that were barely seedlings when the pandemic was announced. The woodland where I walk nearly every day, was bathed in spring sunlight at the start of the restrictions. On my permitted one hour daily walk I saw the wood anemones bloom, followed by the bluebells and orchids. The first beech leaves unfurled with their vivid, acidic green colour and now they, and the oak and ash canopy have shaded the woodland floor which is green again in the absence of flowers.
The natural world is a place where my senses are most regulated – nothing is really jarring, nauseating or frightening in the way it is in the man-made world. I have enjoyed avoiding towns, people and crowds and felt quite sick earlier when I caught a waft of diesel fumes from the increased number of vehicles using our road. The thought of going out more and being exposed to more sensory input is anxiety producing for me. I will need to take it slowly and let my brain and senses readjust to the increased processing that will be involved. I am finding seeing people wearing face coverings very distressing and I am only able to wear certain masks myself. I have used my insights to prepare some information to help people. This has been well received and I know this distress is shared across many of the autistic community and lots of other people too. I don’t use public transport and I am confident in saying that I am exempt from wearing a face covering – but I don’t like seeing other people in them and I don’t want to justify or explain myself either.
The sight of face coverings, puts me in a state of high anxiety before I’ve even factored in the additional sensory processing. On top of this comes all the new rules. I am already struggling. Some people are sticking to the 2m safe distance whereas others aren’t. Shops and other buildings have lots of signs up and I find lots of signs really disorientating and I can’t read them quickly enough to work out what to do and that annoys people. The rules are different in every building and the unwritten rules are different too. In some places it seems less important to follow the arrows or stand in a queue or so on. It totally screws my mind and I can’t see it getting any easier and no one can help me because we’re all experiencing this together and learning as we go along. The stay at home phase was great – I’d like to stay at home forever. This next phase worries me, the rules are changing fast and they don’t seem logical. I need more clarity but recognise there may not be any. I feel compelled to seek clarity elsewhere, where I may have some hope of getting it – and following my diary rigidly, or organising my digital photos in categories, or repeatedly doing things that soothe me, all help but won’t make the pandemic make more sense.
I can feel myself appearing to be “more autistic”. Of course this is nonsense. I can no more become more autistic than I can become more heterosexual, or more female. I am not regressing, I am responding in a perfectly natural way to a perfectly extraordinary experience. I am also needing a bit of space – I love my family but spending so much time together can feel restrictive at times. We have rearranged our son’s bedroom to give him more space and we’ve made a point of making weekends special again. We had started off by clearly differentiating between weekdays and weekends but over time, every day got a bit samey. Yesterday we walked in the woods and our son swam in the river and we ate cake and drank from our flasks of coffee. It was a joy to be able to go in the car to a nearby favourite spot and walk and feel like we used to before the pandemic started.
I have grown as a person through this situation. I’ve recognised the value of my autism and the value of sharing my insights. Like most people, there are times I have thrived and times I have struggled. I began by sharing how productive I have been. There have been other times where simply getting dressed, making a drink and remembering how to talk have been monumental tasks to achieve. I don’t like it at the moment but it will pass. I don’t want my old normal back and I’m unsure of the new normal. I have learned lots about myself, and about others. I’ve learned how to make an app from scratch and watched myself on film. My love of the natural world has kept me going and my writing has kept me focused. My son, my husband and I have annoyed each other, loved each other, laughed together, and stuck together through this. I have unfinished business that needs to be completed and it seems fitting on this day (Father’s day in the UK) that this blog is dedicated to my dad, and I look forward to when he is able to rest in peace after restrictions are lifted and I can take his ashes back to the forest where they truly belong.
I had never heard of this phenomenon until last year. I was having a discussion with a professional who works on the local NHS Autism team, and she asked if I wanted to have a look at a questionnaire about camouflaging and masking. I thought why not, and promptly set about answering the 25 questions. I emailed my response back and was delighted to hear I had scored really highly on all areas! “Well, I’m clearly not as autistic as I thought I was, I knew I’d get a high score because this is all obvious stuff that everyone does all the time. See I’m as normal as the next person”. I thought to myself.
My high score wasn’t because I’m not that autistic, in fact it indicated that I mask almost all of the time and this is a very common experience in autism. I was beginning to feel uneasy. I had realised I was autistic by then but wrongly assumed the ‘autism spectrum’ people talk about was a linear thing with mild autism at one end and severe autism at the other. I would probably be a little bit autistic – because I work, I have a family, I function well enough to convince most people I’m normal. And I’ll forget about all that other stuff; the never fitting in, the always knowing I was different, the misdiagnoses and failure to reach my potential – that’s probably all because I’m just such a crap person! Of course, it is not like this at all – you can no more be mildly autistic that you can be a bit gay, or slightly pregnant. The spectrum is a collection of different elements, aspects and strengths and every one of us who is autistic, has their own unique combination of these. And everyone that isn’t autistic is not on the autism spectrum.
The questionnaire was scored in the areas of compensation, masking, and pretend social ease. Until this point, I had assumed everybody pretended to be normal all the time. I realised that some people were more ‘normal’ than others, but I had no idea that there was even such a thing as masking. I still cannot comprehend how neurotypical people operate in terms of social interactions, so watch out those of you who know me, I plan to find out and will probably question the hell out of you!
Types of masking.
There are lots of different ways autistic people cover up their autism and its worth having a read of other people’s experiences . I’ll touch on three elements of camouflaging and my choice of terminology has no great thought behind it and is not a definitive explanation – to be honest, much of the language used in research and accounts of masking feels a little judgmental to me – it suggests ‘normality’ and deficits :
Compensation – this includes all the tricks and tips I’ve taught myself (and others) over the years. The techniques for making realistic eye contact by looking at the person’s mouth instead of their eyes. I had the added bonus of having regular investigations and treatment for hearing problems as a child, so my lip reading was positively encouraged. A few years ago, I considered writing a book for autistic people about how to get by in life. I had worked as a manager of a residential service, with a woman who had been in the care system since childhood and had a whole host of psychiatric and behavioural diagnoses. I supported her through assessment for Asperger’s (as it was known back then) and when it came to my work appraisal she wrote some feedback that said “Emma is really good at teaching me the tricks of the trade”. I was delighted at this – not least for the compliment, but for her accurate use of complex language. In fact, I was the one who said to my line manager “What do you think she means by that Karen?”
Masking – this includes hiding my distress, confusion, and difficulties whilst pretending all is well. I have spent my life feeling as if I have been winging it, and I am often only moments away from making myself look totally stupid by asking a question that everyone else intuitively knows the answer to. The further in my career I have gone, the more I have had to mask. Every time I hear a new piece of business jargon I have to look it up so that I can keep up with the conversation. I have to suppress my need for clarity and my desire to blurt out “Why are you talking such utter nonsense?!” But pretending I know what is going on isn’t always helpful. I’ll give you one of my embarrassing moments:
I was sat in the board room in a very serious meeting and the person talking used the phrase “the elephant in the room”. Now, I absolutely knew this was not to be taken literally. An alarm went off in my brain that said “idiom/metaphor/figure of speech alert”. So I used my quick thinking brain to whiz through everything I knew about elephants to try and work out the meaning. Elephants are big – are they talking about something that is big? Elephants have big ears and a trunk – no it can’t be to do with that and stop it Emma, do not go off on a mental tangent about the different types of elephant and their respective physiology. Elephants never forget – aha, maybe it’s to do with memory or remembering something. What else do I know about elephants?….And then the question came: “Do you have any thoughts on that Emma?” And I realised that I hadn’t got a clue what was going on, or what the question was, and I couldn’t even grasp at an answer out of thin air. The conversation had moved on and I was lost in the world of Proboscidea. I was probably the only person in the room with the taxonomic knowledge to name the order that elephants, mammoths and mastodons sit in – and I was probably the only person in the room feeling stupid, anxious and lost! And all because I didn’t want to make myself look stupid for not understanding something. I challenge you to spend a day in your workplace or school considering how complex language is if your default setting is to take things literally.
I also mask my need to move about or do anything that ‘looks’ autistic. I find moving is very regulating, it helps me concentrate, focus and come up with ideas – all the sorts of things employers and teachers encourage. But it would put me in the firing line of ridicule, misunderstanding and people would assume that there was clearly something wrong with this otherwise bright and articulate woman who can’t keep still and behave ‘properly’.
Assimilation – I never felt like one of the girls at school but I knew my life would be easier if I pretended to be like them. I learned about boyfriends by listening to what other girls had to say and joining in the conversations as best I could. I was not attracted to boys at all as a teenager and I wasn’t attracted to girls either. I learned the language of relationships but had no idea of the meaning of some of the terms (‘getting off with’; ‘blow job’ etc). You’ve read how my brain works when I described the elephant in the room – go figure! Many of the girls at school read magazines and studied and giggled at the problem pages and articles on how to know if a boy fancies you and how to flirt and so on, so I joined in and copied. This was useful because it gave me some proper concrete information on how to have relationships with boys and made me appear to have something in common with my peers. I wasn’t interested in having a boyfriend but knew it was a normal part of growing up. I worked on how to flirt and how to tell if a boy was interested in me but unfortunately put so much energy into ‘getting it right’, I never considered consent or whether I wanted to go out with them. I can’t remember having feelings towards other people as a child, sexual or otherwise. I didn’t like or dislike people. I didn’t look at someone and find them attractive. My sister covered her side of our bedroom with posters of pop stars and my friends talked about boys they fancied and got excited when certain actors were in films. None of this did anything for me at all. I bought a small photo in a frame of George Michael in Speedos, because Wham! were very popular back then and I knew it would be easier if I said I liked someone. The photo sat on my bookshelves whilst I lived at home and was my attempt at fitting in and somehow feels a rather ironic choice now – gay and dead! RIP George x.
Don’t we all mask?
I assumed everyone masks. I know for a fact that my old line-manager swears her head off outside of work but was always totally professional within her role as a director. I know that it would be rude and feel hurtful if I replied honestly when someone asked if I thought they looked good in the item of clothing that I thought looked dreadful on them. I know that you cannot go through life being impulsive and doing and saying whatever you want at the expense of others. So isn’t masking something we all do?
I’d argue that it is not. Those things are the normal day to day, not being an asshole type things we do because we are sharing this planet with each other and need to get on. Kindness is essential, even if it is frequently overlooked and undervalued in our society. Kindness comes first for me. If I choose the kind option then it may mean I modify my behaviour or instinctive response. I may need to hold back and rephrase my honest response into something diplomatic and kind – but I can still be true to myself and be honest. Assertiveness is a good way of being true to yourself because you still meet your own needs but also meet other people’s needs too. I will compromise my behaviour but not my values.
So what is different about autistic masking?
Quite simply. The cost.
Masking your autism always comes at a price. And I have paid with my mental wellbeing. The costs are twofold. The direct mental health costs of camouflaging are exhausting. Whilst I’m concentrating on getting my eye contact right, I’m using valuable capacity that could be used for answering the question or thinking. And the continual anxiety of whether I’m getting it right wears me down emotionally and cognitively. The indirect costs are things like low self-esteem from getting into all sorts of scrapes while pretending to be normal, and not feeling sure of who I am and whether I am an ok person or not, as I feel I’m living a lie.
It erodes my identity because I’m not sure which bits of me are truly me. If you ever share doubts about your identity with mental health professionals, it can indicate various psychiatric conditions and personality disorders. Misdiagnosis of autistic people is common and once a label has been given; every trait, behaviour and experience may be interpreted as part of that labelled disorder – this further erodes the sense of identity and creates a sense of being damaged or ill. It also creates a sense that you can somehow get better and recover. Autism is not an illness and recovery is not going to happen. Living a fulfilled and valued life can happen though, but in my opinion is unlikely to whilst you perceive yourself as broken and needing to be fixed.
The knock-on effects of mental health treatment can further affect your wellbeing. Stigma, discrimination, and side effects of medication are just three of the many ways this can happen.
Another effect of masking is that you don’t regulate your emotions or senses when you need to. All those times I stop myself from moving about to regulate myself, I stay dysregulated. All that energy that goes into keeping still or not reacting to whatever it is that is causing me to become overwhelmed further increases my distress. And no one knows. That is a serious issue because if no one knows how distressed I am until I absolutely have to show it by either falling apart or completely switching off (some people would describe how they experience meltdowns or shutdowns) then I will look like I overreact. I struggle to identify and verbalise what I am feeling anyway and if I am hiding what my body is telling me I need to do to feel better, no one can ever help me. Also, the idea that so-called ‘high functioning’ autistic people don’t do all those autistic things is reinforced – which is unhelpful and inaccurate. The same is true of not asking for clarification, or time to process information – my needs go unnoticed and therefore unmet.
Regular masking means you may never learn decent coping strategies because no one knows you are not ok. Then when something happens in life that is difficult, traumatic, or distressing, you have no idea how to cope.
Should I take off my mask?
Or even could I? Or do I want to? Yes, I would like to be more “me”, but that doesn’t mean going about my day impulsively and insensitively doing what I please or saying whatever comes into my head. I have a choice in much of what I do. I do not have a choice in how my senses work or how my brain processes information. I will react strongly to a loud noise because my body and brain think I am in danger and no amount of me telling myself otherwise will change that. I will take things literally, or not be able to read between the lines sometimes. I do have a tendency to be honest and upfront, and my brain will opt for the honest answer every time, regardless. I cannot choose how I react to all of these things and sometimes other people need to be more understanding and patient. Where I can choose how to react, then I do my best. Or if I’m having a bad day, I’m a pain in the backside – just like everyone else can be!
I have been very fortunate in having a career where I have had some excellent mentors, role models and line-managers. I trained to become a registered manager by taking part in a scheme where I had placements in a range of different care services under a number of different managers. I used my excellent skills at masking to observe, analyse, copy, and practice the management styles in each placement and gradually hone them into my own style that worked for me. This is where my ability to mask has been a huge benefit. I wasn’t doing it to disguise something, but rather to try out what worked for me so that I could become a good leader myself.
So I don’t necessarily need to stop masking. On occasion it can benefit my mental wellbeing because it enables me to learn skills that are good for my personal development. It enables me to ‘test out’ how to behave in certain scenarios. It helps me learn rules for behaving in particular situations.
However, it is essential that I have balance, and any period of masking needs to be balanced with times of not masking. For me, camouflaging for lots of the time is not sustainable. I am blessed with having people and places that require the minimal amount of covering up.
What am I masking?
I am similar to many autistic people because I compartmentalise things. The world is so chaotic and unfiltered, the only way I can cope is to divide it all up into bits that have their own rules and explanations. That way I can function day to day because I have less to work out. If I am at work, I know how to behave in an appropriate way. If I am in the village shop, there’s another set of rules to follow as far as conversations, behaviour and social interactions are concerned. I can even cope with people being in a number of a categories – living in a rural village, it is quite normal to see people in a number of their roles – my conversation at the GP surgery is very different to my behaviour when I see my GP at a concert we are both playing in. This works well for me until people pop up in the wrong places or the rules change! It enables me to mask better too. I can have a mental phrase book of small talk for the shop, small talk for work, chats while dog walking and so on. I am more comfortable with defined roles and tend to have more meaningful relationships within boundaries. I know how to pretend to be whatever the particular type of ‘normal’ is in any situation. It helps me predict and I feel more confident.
The trouble is, this reinforces that very disjointed sense of who I am. It adds to the questions I have about my identity and what is authentically me. I have needed to join up my compartments a bit more so that I feel more whole. I am not just autistic Emma or wife Emma or mum. This also makes me question again – what is it I’m masking? Where is the autistic bit? Of course, there is no autistic bit in the same way as there is no female bit of me or British bit. These parts of my identity run through every part of my being.
How do I take off my mask?
When I was first diagnosed with autism I went through a process of revisiting every experience in my life and viewing it through the lens of my autism. I looked for anything that was out of place (how very autistic of me!) and I could not find one single example that would show I was not autistic. Things that had puzzled and frustrated me about myself for years became crystal clear. I felt liberated. I felt that I wanted to be proudly autistic and why should I hide? I felt like I wasn’t autistic enough because I was so good at hiding it, and maybe I should try and act a bit more autistic? But I didn’t really want to. I wondered if I was properly autistic because I don’t do lots of stereotypical autistic things. Was that because I was ashamed? How the hell do I be this authentically autistic version of me?
I thought all around this subject and could not get my head around it at first. But like so much of my processing, it took time and involved taking the long way round and detouring off all over the place. I concluded that my need for compartmentalising everything was holding me back. The autistic bit of me is all of me. When I masking, I’m still being me. When I am being a pedantic, annoying know-it-all that won’t stop telling you what it is I need to you to absolutely know, right this minute, that’s me too! The totally scatty, unable to organise her own lunch woman – that’s me. The hyper-focused, innovative thinker that solves problems others can see no way round – that’s also me. The cowering from the sudden noise Emma is the same Emma that stands up confidently in front of people and shares her knowledge. The woman pretending she’s ok because she doesn’t want to let on she hasn’t got a clue, that’s Emma. And so is the woman who stands up for others and tells the truth regardless of the effect, because it is the right thing to do – it’s all me.
When should I take off my mask?
I am not letting myself down or failing to be authentic by masking. How dare others judge me for coping the best I can. Particularly when the risks of not masking are so dire – ridicule, discrimination and misunderstanding. And how dare I force myself to act in a way that doesn’t sit right either – be that through masking or not masking.
My wellbeing is important. If my masking affects my mental health in a negative way then it is clearly destructive and I need to reduce it. But that’s not just down to me. I may decide “Fuck it, I’m going to flap my arms about next time I need to in a meeting as I’ll feel much more able to concentrate”. That will not go down well – regardless of the rights and wrongs of it.
Do I have the right to? Absolutely. If I had a different disability then it would be accommodated. No one says deaf people can’t move their arms to communicate through signing, because it looks funny and might upset the other people in the room. Do I need to be the warrior out there being authentically autistic so that stigma is challenged? That’s up to me, but no, I don’t have to be.
What would help though is better understanding. Being sensitive to the needs of autistic people and creating more accommodating environments that don’t create sensory overload. Using language that is clear and not open to interpretation. Giving people time to process questions instead of asking again in a different way and thus doubling the amount of processing. If autistic people were properly, compassionately and genuinely listened to, all this would be clear – I am not saying anything out of the ordinary. If people acted in this way then I wouldn’t need to ask so many questions or regulate myself as much. If people got to know me and understood my values and recognised that although I may seem serious, I have a good sense of humour and although I may seem unemotional, I am passionate about many things. Then, when I do say the wrong thing or act in the wrong way, they’ll know it’s just Emma being Emma and she doesn’t mean anything harmful by it.
How will this look?
Living authentically, is about living. It’s the journey not the destination. The world is not ideal so it is likely I will always have occasions where camouflaging my needs is preferable to meeting my needs publicly. If I choose to mask, that’s fine and totally authentic. If I can’t help myself from masking or don’t even know that I’m doing it because I’m so used to it, then that is clearly authentic too. Masking is never a sign of failure. Aspiring to not mask is not essential – the world gives autistic people a hard enough time without us giving ourselves one too. I have more acceptance of myself because I have more understanding – and that means I feel more in control and more able to choose how I live. Will I apologise for needing to meet my own needs and regulate myself? No. Will I ask more questions when I need to? Almost definitely. Will I do things that make me feel self-conscious? Probably not. Will I compromise my values or lie? Never.
But how will this work for everyone else – if I have considered my part then what about you? If you are someone who has good social skills and understanding then do you really have to insist that someone who is uncomfortable with eye contact looks at you? If you are good at all that stuff then why is it not you that is changing your behaviour? If you understand something and someone asks a ‘stupid question’ then why not be patient and explain rather than show your frustration. If you are puzzled by another person’s sensory experiences then why not enquire in a gentle way so that you can adapt and adjust so that they feel as comfortable as you do?
I don’t purposely do things to make other people feel uncomfortable, but I can’t tolerate bullshit either. The world feels very different at the moment and I’m pleased to see people acting in a less bullshitty way. It is good to see that we all wear casual clothes at home when we are on our work conference calls. It is good to see that many of us have pets and children that are important to us and what we really like is having a walk or sitting in the garden. When the ability to shop, spend and consume indiscriminately disappeared, many people re-evaluated what was important to them. Why not make understanding and accepting each other more, part of that?
Riding back over the mountain earlier, a pair of Red Kites swooped down low in tandem in front of me and majestically soared back up high into the bright blue sky. I was close enough to see their individual talons and notice whether either had a tag on its wings. There is something about the solitude of motorcycling and being in the scene rather than observing it from behind a windscreen that makes my heart soar, like those Kites, every time I ride.
My love of biking was sparked as a child. I spent those long school summer holidays wandering around on my own, down on the beach or in the park; or maybe I’d cycle the 15 mile round trip on my pushbike, to Brean Down, a local beauty spot sticking out into the Bristol Channel. I’d climb along to the old fort where I could hide and watch the rabbits and avoid the wild goats! (wild? – these were genuinely absolutely livid, and I felt like I took my life in my hands every time I ran the gauntlet through these hairy, horned, feral beasts). I’d make sure I was home in time for ‘Junior Kickstart’ though. This was a 1980’s British TV show and an offshoot of Kick Start – a televised trials bike competition where competitors would skilfully make their way around and over various obstacles as quickly as possible without touching them, knocking them over or putting their feet down. I can still sing the theme tune 30+ years later – along with the revving engine noise at the end!
I had to make do with bicycling when I was young. We lived in a semi-detached house in a town and there was nowhere to ride an off-road bike. And furthermore, it would not have happened because I was a girl. I wasn’t a typical girl mind. I asked my mum what I was like because I know I never played with dolls or wanted other popular 1980’s girls toys, like a ‘Girls’ World’ – in fact I found the idea of having a severed head (albeit a plastic one) in my bedroom that I could apply make up to and do its hair, quite repulsive. I did have a Cindy doll – I cut its hair off and knitted it some survival clothes for having outdoor adventures in, like being lost in a jungle or stranded on a desert island. My favourite things, according to my mum, and she was absolutely spot on; were reading and cycling. I would get on my bicycle and disappear off for as long as possible, not considering the fear I instilled in her by cheerily recounting how I’d cycled to the next town along the main road and then climbed a hill or gone looking for creatures in the sand dunes. I was an extremely accident-prone child and had a tendency to go off in pursuit of whatever it was that took my fancy that day, with no consideration for safety or telling someone. There was no way I was having a motorbike.
I had my first ride as a pillion passenger on a family friend’s motorbike. I remember how it felt sitting on the back and the pull of the various forces working on my body as we accelerated. I knew at that moment; I would have to have my own motorbike someday. It was all the fun of bicycling but with this added ‘something’.
When I was 18, I bought a moped. An orange Suzuki FZ50. I lived in a town near the Quantock hills and I’d ride up there and wander around, enjoying the solitude away from the busy streets and the flats where I lived. I loaned that bike to a ‘friend’ – well it was someone who lived in the flats who I hung out with. They disappeared off on my bike and I eventually found it dumped and broken. I saved up and bought a Honda step-through – one of the most popular motorcycles in the world ever. The classic C90 in red, with fairing, top box, leg shields – the full works. This bike wasn’t a ‘twist and go’ like the moped, but had 3 semi-automatic gears where you pushed the gear pedal to engage in a gear but without the need to hand operate a clutch lever. I used this bike for my daily commute to college and it ate up the 13 mile journey easily. However, I had decided that travelling to Taunton every day was tiresome and I was offered a room in a shared house belonging to someone on my course and I moved in. I was riding back to my new pad one evening and a young man shot through a red light and I hit the side of his car at 30mph and tumbled over his bonnet onto the road. We agreed to settle this privately and he gave me enough cash to buy my first proper motorbike; with manual gears, a kick start, and trail bike styling – I was about to realise my ‘Junior Kick Start’ dream with Honda’s XL100.
Up until this point, I had motorcycled alone, much like I did most things in life. One night in January 1994, with my arm in a sling from the aforementioned accident, I turned up at a friends’ house. John, Chris and Matt were guys I knew from my old town and had also moved to Taunton and were at the college, and they had planned a night out. Did I want to come along? I decided to give it a try and when I arrived I found that everyone had brought something to drink before heading for town. I’ve never been good at ‘getting’ this type of social etiquette and I looked around the room and asked whether anyone wanted to go halves with me on a bottle of red wine from the off-licence. This one guy said he did and we went off in search of alcohol. He asked me about my injury and we got talking about motorbikes and have never really stopped since. Mal and I have just been sat talking about bikes over lunch in our garden and we both still feel the same about life, motorcycles and each other 26 years on.
I hadn’t taken my bike test at this point because I had a full car licence and you could ride on L-plates with that. I decided to take my CBT and test, and passed first time that April. My first ‘big’ bike was the little Kawasaki Z200, I hope my husband has forgiven me for spraying it matt black. It was a lovely bike and took me on all sorts of camping trips and to rallies and eventually when I moved to Bristol for University, it lived in my front garden and was used for getting around the city. I used to ride to West Wales where Mal had gone to pursue his studies in Lampeter. I discovered the joy of having long rides – and my goodness, everything feels like a long ride on a Z200! I had read Robert M. Pirsig’s Zen and the Art of Motorcycle Maintenance and my head was filled with tales of the open road and philosophy. I still have a copy of this book on my bedside table and I’ve re-read it at various points on my life and I always find something new that resonates with me. Pirsig was an extremely intelligent, articulate man who experienced treatment with electroconvulsive therapy back in the 1960’s when he was diagnosed with schizophrenia. Every time I read his books (Lila: An Inquiry into Morals further explores the concept of quality started in Zen and the Art of Motorcycle Maintenance) I reflect on how similarly we see the world even though we are world’s apart. I would have loved to have a conversation with him about so many things – I’d love to know his thoughts on autism.
Although Mal and I rode together either as pillion on each other’s bikes or solo, I never fancied joining a club or gang. It wasn’t just my gender – although I must say, most images of biker girls do not show appropriate safety gear in my opinion! I have just never been part of any ‘scene’. When I moved to West Wales there was quite a few bikers. Lots of students, a local MAG (motorcycle action group), a back-patch club on the coast and a NCC (National Chopper Club). There was a MCC around Lampeter at that time but I’ve always been put off joining any clubs. The back-patch MC clubs are generally male only (there are a couple of female MC’s) and the MCC’s have never appealed either. Mal and I rode around and lived a simple life and we hung out with other people occasionally and life was good. I had spent a good few years by this time with only two-wheeled transport. I had a full car licence but no car and I rode my motorbike day in, day out. Whatever the weather and wherever I needed to. We rented a converted barn in the middle of nowhere and had no electricity and only spring water. There was no road and the track was just about passable, and allowed me another taste of my ‘Junior Kickstart’ trials riding experiences. My favourite ride was over the hills to Lampeter and on a fine day I’d take off my helmet and ride along the ancient roadway, wind in my hair and a song in my heart.
I’ve never been one for fashion or dressing up, and motorcycling suited me for that reason too. I wore my bike gear all the time. No tough decisions on what to wear each day, no not knowing whether I felt comfy or not – I was always comfortable, my bike gear moulded to fit me and didn’t have to be washed so never smelt ‘wrong’ or felt itchy. It also suited living in a barn with no electricity where we relied on a rayburn and gas lights and candles. I’d ride to town and carry home a week’s worth of shopping in my panniers and rucksack, and strap a sack of coal across the saddle.
I opened by describing how being ‘in the scene’ rather than observing, was so important to me. Thank Robert M. Pirsig for that one. Riding a motorcycle is an incredibly ‘in the moment’ type activity. I have practiced mindfulness for a long time, and had an interest in meditation, and philosophy, and science for even longer. When I ride, I can only think about the present: I can wonder, and explore ideas, and contemplate and muse; but I rarely reminisce, or worry, or replay past events or plan for the future. You have to be present because you are on two wheels and travelling at speeds of up to 70 mph (or whatever the legal limit is). If you are not totally and utterly focussed, it is likely you will have an accident. Plus, why would you want to miss a single minute of that wonderful feeling?
So what is it that is so fantastic about biking? For me it’s not the lifestyle, I’ve never been one for conforming to any type. Although, the camaraderie is like nothing else. This morning I know that every biker that raised their hand to acknowledge me, had that look in their eye, and probably a smile on their lips that said “This is fantastic isn’t it?!” I’ve always felt accepted by other bikers, my autism doesn’t even seem to register because it’s about what we have in common not what our differences are. I’ve met lots of different people who ride bikes and I’d say that many of them would be seen as eccentric or non-conformist. It’s fine to meet a biker you have never met before and launch into an enthusiastic tirade about your ride, or their bike, or ‘did you just see that idiot pull out in the Volvo?, or even the cake you just had with your cup of tea. Small talk doesn’t seem necessary and this aspect of biking has always appealed to me too.
The most significant part of biking now makes more sense to me. I’ve always recognised there was ‘something’ going on, on that very first ride as a pillion passenger. Motorcycling affects every one of my senses in a most intense way. It is the most holistically satisfying activity ever. It regulates my emotions and senses like nothing else. Harley Davidson and the UCL have recently conducted scientific research into the mental health impact of motorcycling and the findings showed that the benefits are more like those of exercise (reduction in stress hormones etc), rather than being similar to having a drive in a car. Any biker could have told you this! I’ll describe how motorbiking effects my senses:
Vision: There are so many styles of motorcycle to choose from. I’ve owned and ridden all sorts, the machines I’ve described in this blog and many more besides. I do like a trail type bike personally. I like to sit upright and be high up and get a good view over the hedges. My latest bike is an Aprilia Pegaso Strada – a kind of adventure bike machine. Bikes are beautiful to look at and Mal and I sat just staring at his Enfield bullet and it’s wonderful mechanical simplicity and style.
Smell: Who doesn’t love that smell of hot engine, petrol and oil? It is the most satisfying smell to open your garage door to.
Auditory: I love a big single cylinder engine. I had an XBR500 café racer style Honda before the Aprilia and that too had a wonderful slow, deep, thump of a big single cylinder motor.
Touch: The feel of wearing clothing that is solid, fits well and has no fancy bits to irritate me is great. I love the sensation of sitting on the bike and being able to feel things with the extremities of my body. The clunk of the gear pedal, the twist of the throttle and the wind in my face.
Taste: It isn’t a proper ride out if you don’t have chips or a cup of tea and cake! Mal says I should write a book called ‘Around Britain by cake’. Whenever he recounts a past ride-out I’ll always remember where we stopped and what we had to eat there. Food just tastes so much better when your senses are switched on by the joy of riding.
The next 3 senses are the ones less discussed outside of autism circles. These are the important ones for me though when it comes to motorcycling:
Vestibular: This is the sense of where your body is in relation to gravity. This is the sense that biking really excites in me. I like speed but I prefer acceleration. That pull and push of speeding away from a standing start just gets me going every time. When I am moving, my clumsiness disappears, and I can judge speed and distance in a way I just can’t when not on the bike. The forces working on my body as I travel switch something on in me that lasts much longer than the ride itself.
Proprioception: I mentioned my clumsiness and if you saw me off the bike you’d probably advise me that motorcycling is not for me! The clothing helps give me a sense of where my body is in relation to itself. I feel sensations in parts of me that I didn’t know existed otherwise. Having recently taken up riding again after a break, I realised that the vibration of riding and the repetitive movement of using my hands on the clutch and brake levers give me a sense of where my forearms are. I’d forgotten I had forearms to be honest and I frequently have bruises around my wrists where I knock things because I don’t notice in time. I need to put a lot of movement into my arms to notice them – I wonder whether that is why certain repetitive movements involving shaking or flapping your arms are so common in autistic people? The vibration (that favourite big single-cylinder engine again) gives me a sensation throughout my body. It’s neither pleasurable nor uncomfortable, it just seems to vibrate everything awake and I know where my body is for ages after a ride. I have certainly been less clumsy during those periods in my life where I rode daily.
Interoception: This is the sense of knowing what you feel – whether that is bodily functions like being hungry or your emotions. I have weak interoception and motorbiking awakens a pleasant feeling in me. It’s not a strong emotion, it’s more an inner peace where I know I’m ok, I know I’m contented and I know that I am part of the world.
Have a read of Zen and the Art of Motorcycle Maintenence
“Yes” he replied, “you’re always kind and don’t give punishments for no reason”
I’ve been a mum for quite a while now and I’m wondering when my natural maternal instinct will kick in! Actually, I don’t expect it to. Now that I understand my autism diagnosis more clearly and recognise how my sensory processing works and in particular my interoception – or sense of knowing how I feel; I am as likely to feel a natural mother as I am a natural teapot, or natural anything else.
If I don’t feel like a good mum then does that mean I’m not one? Of course not. I often don’t feel like I need the toilet – but I still have to go regularly! I did not feel that I dislocated my knee when it was twisted out of shape. And I may not experience feelings of intense love or anger or regret, but I know what these emotions are and although the feelings may not be there for any of these examples, they are still valid and very real experiences, albeit “felt” in a different way.
I “know” that I need to use the toilet regularly, I need to eat regularly, I need to be aware of my body and potential injuries. I “know” that when something upsetting happens I may not feel a strong emotion in my body but my sensory processing may become hypersensitive sometime later that week. I know that eventually, after a lot of intense cognitive processing, I may have a sense of an emotion – often long after the event. Or I may not. This is just how I am. I also know with every ounce of my being, that I love my family.
I was delighted and surprised when I discovered I was pregnant. It was unexpected and we had experienced previous losses. I enjoyed the experience of being pregnant and was super-fit and swam every day in the local pool – only just able to bend down and put my shoes on afterwards by the time I was in the last weeks of my pregnancy. I also walked with the dogs several times a day and was even riding my motorbike until the throttle cable snapped and I pushed it back into the garage where it sat for many, many years unridden.
My experience of birth was traumatic and lengthy. Eventually our son was delivered by emergency caesarean section. He was 11 lbs (5kg) and was certainly not going to come out via the traditional route. I remember desperately needing a can of fizzy orangeade and a ‘double decker’ chocolate bar straight after he was born and I begged my husband to get me them. I have never craved anything so fizzy and so orangey, so much in my life! My husband had to make a visit to the shops the next morning to exchange the new-born sized baby clothes for something that would fit this strapping lad.
We settled in to family life and I was very unwell for a long time and will forever be thankful for the continuous support my husband gave me to help look after both myself and our son. I have very few memories of family life, unfortunately, but I have lots to share about how we live; how we cope; and what we think about life, the universe and everything. Our family’s story is not solely mine to share and it is up to our son if later on he decides to describe incidents and events from his life or not. My own autism, and my own upbringing has influenced how we get along together. And this is what I will share in this series of blogs:
Food, eating and drinking.
Food is a huge topic to cover. We often take for granted that we eat our meals and snacks and hardly give a second thought to it. But there are multiple things going on with regards to mealtimes:
The environment – a familiar family meal at home, or a busy café, or eating whilst in the car, or on a picnic. The list could go on. These places vary in terms of social etiquette and sensory input. Anxiety levels can increase very quickly in certain environments because of the sensory processing demands (think scraping chairs on café floors, laughing customers and smelly food)
The ‘rules’ – when I was growing up, my family were very keen on table manners. I took to that quite well – I enjoy a rule and knowing how I ‘should’ behave. It can get complex though because rules can feel very contradictory to an autistic mind. “Eating outdoors walking down the street or sat on a bench in town is unacceptable and bad manners” but “Eating outdoors sat down on a blanket in a field is a picnic and a treat”. “You must use a knife and fork properly” but not for pizza, or for a buffet, or for the chip shop. But chips at home must be eaten with cutlery.
Interoception – knowing you are hungry, knowing you are full, knowing what you fancy to eat, knowing if you like something or not. Personally, I always opt for exactly the same thing when I eat out or I choose it before I get there. I know what I’m getting and I don’t have to make a complex decision based on what I feel like whilst in an overwhelming environment that is going to suppress any sense of what I feel anyway.
Choice – regardless of whether your interoception works in a way that indicates to you what you’d like to eat, choosing from potentially infinite potential meals is almost impossible. “What do you fancy for dinner?” is usually followed by my brain rapidly firing through the following thought processes:
What have we got? – I don’t know.
What should I be asking for? – Is there a correct answer I’m meant to know?
I know, what did I have yesterday? – I’ll ask for that.
And that is why I often eat the same things every day. I also tend to opt for carbohydrate rich, yellow, beige and white foods, and cheese. You know where you are with a white food. No one can hide something inside white food that you will come across unexpectedly. These foods are pretty safe. You know what you’re getting! It’s also easier to imagine what you want from a list of choices if that choice is limited to one colour. Less thinking!
Proprioception – coordinating cutlery whilst sitting up straight in a chair with the sudden smell of hot food wafting up your nostrils takes a lot of concentration! I do nothing intuitively or naturally and I need to constantly check where my body is . This is hard work.
Consciously coordinating chewing, swallowing, breathing and talking requires a great deal of focusing. It is easy to lose track and cough and splutter.
Taste – like many people, my sensory processing works in such a way that I can experience strong aversions to certain tastes whilst not noticing other tastes that some people find repulsive. I enjoyed licking door keys as a child and although I haven’t licked a key in many a year, I am tempted to do so just to get that hit of sour, acidic, metally tang that is both unpleasant and strangely alluring at the same time! My brain tells my body that certain tastes are not just unpleasant – they are dangerous, repulsive and should not be eaten. Fortunately, there aren’t that many tastes like that for me and I tend to prefer bland foods but I’ll enjoy a mild curry or chilli, but I will not go near tastes that ‘shouldn’t’ go together like sweet and sour food. What is more significant to me is…
Texture – the sensation of certain foods in my mouth is so extremely repulsive, I am struggling to write about it candidly whilst thinking of examples! Throw away your logic and consider mine instead for a moment… I like a jacket potato, I like chips, boiled spuds are fine too. Mash is not. They are all potatoes and I’ve had endless “but you like potatoes” type discussions in my life, but no one is going to convince me otherwise that mash is just potato and fine to eat. I will eat occasional mash – for instance on top of a cottage pie that my husband has made. That is because I know exactly what that mash will feel like in my mouth. There will be no surprises. “Just try a little bit” does not help me. Food is not consistent. Different brands of baked beans taste very different to each other, and with my poor interoception and ability to know whether I like something or not, how am I meant to know if someone has poisoned my beans, or if they have gone off, or just swapped them for a different brand? I know they are still beans and I like beans, but they don’t taste the same and that means something is WRONG!
Temperature – I need the temperature to be just right. I’m blonde – maybe its a ‘Goldilocks and the three bears’ thing?! If it is not just right, I won’t eat it.
The key thing to remember is that none of these variables are working in isolation. And that is why I can appear so picky about food. If a café has lots of music playing, and bright lights and smells of meat (which I don’t like) then it is likely that my central nervous system will be really fired up and working out whether I want to run away; freeze; or fight. I may become hyperalert and over-responsive to sensory information and find I can’t tolerate something I usually eat because it tastes different. Or I may shut down inside and be under-responsive and crave something strongly flavoured that registers on my taste buds. If I am stressed about something going on in my life, or it is a big day because of an interview or event, my sensory processing works differently too. This is not a conscious choice on my part but an automatic reaction driven by my atypical neurology.
I think the generation I grew up in was more strict about table manners and finishing what is on your plate and eating what you are given, without question. That helped me in some ways because the very strict rules meant I at least had some structure and predictability around mealtimes. However, the predictability was I’d end up being told off! Every single time. And that has added an additional component to my relationship with food. In the 1970s and 80s, sensory processing wasn’t understood like it is today, and I was viewed as fussy or a picky eater. We understand more about it now and I’ve been able to use both my own upbringing, that recognises the importance of structured mealtimes – and my personal insight, that recognises the challenges and distress of autism to inform how we have brought our son up.
In our house, we don’t make a big deal about food. It is a big enough deal already! We totally appreciate how our son may like something one day but not another day and how his logic for not eating something may not work along the same lines as our logical reason for why he should eat it. A balanced diet is important and we have had weeks and months where we metaphorically pulled our hair out thinking “he cannot just live on that for the rest of his life”! But he hasn’t. Eventually, whatever it was that drove him to need to eat a particular food or avoid a particular food has changed and he has tried something else. Here are some tips that we’ve used over the years:
Regulate your own emotions and senses before you begin. Then help your family regulate themselves.
Don’t panic (or at least don’t look like you’re panicking!). If your panic is sensed then stress levels will rise. If stress levels rise, whatever the sensitivity is may increase.
Choose your battles.
Keep mealtimes calm and never make any of it a big deal. Most children will not starve themselves to death. Talk to your health visitor or GP when you need to.
I imagine it is normal to feel powerless or like a failure or neglectful. Don’t compare yourself to other parents who talk about their ‘perfect’ sounding families and child-rearing skills.
If it works for your family and you are fulfilled and living life how you choose then consider carefully why you would do things differently just to appear ‘normal’.
Teach rules that are 100% honest and consistent and teach different rules for different scenarios e.g. eating with your fingers is fine at home but not at Nanny’s house because Nanny is old-fashioned and will view it as bad manners.
Make learning about food a family hobby or interest. Grow some food to eat. Cook together and don’t worry about experimenting as you don’t have to eat it! Bake a cake and mix the ingredients by hand and not a spoon – if you like the sensation. Learn about food groups and a balanced diet.
If a particular colour of food is preferred then find a balanced diet from that colour.
Never use food as a reward or a punishment. Ever.
If certain textures are preferred then find a balanced diet using that texture.
If cutlery is tricky to use then order food when you are out that doesn’t require cutlery e.g. pizza.
Choose your battles. It’s worth repeating!
Choice can be overwhelming and whilst we may think that giving a choice may make it more likely they’ll eat it, it may not. You could be just adding to the overload. We have a weekly menu up on the fridge. This means that meals are predictable with no nasty surprises and there is enough time to process what the meal will be and decide if that’s ok or if we want something else.
It is perfectly logical to like something in a café but not at home or vice versa. If you are a person who has to analyse and categorise everything to understand it. And you only see the bigger picture by first studying the smaller pictures in intricate detail, then you will notice when things are different or don’t go together.
Choose your battles.
Social eating is different to eating on your own or with your family – it can be very overwhelming and you may need to take time before and after to regulate your senses and emotions and those of your family.
Make your own rules. Who says you have to eat at a table? Or with other people? It can be nice, and it is seen as an important social occasion, but if at first all you can do to ensure your child is fed is to give them what they like, when they like it, where they like it then do so.
If using cutlery is difficult, risk assess whether they can use alternative cutlery. Maybe this will be specially adapted handles for knives and forks or even extra sharp cutlery that makes cutting easier. (like in the photo).
Use plate dividers to stop certain foods touching each other or use separate plates.
Don’t tease or point out things you find odd. Accept people’s preferences. (I need to have my burger arranged in a particular order, I only have a tiny bit of milk on my cereal, vinegar must never touch bread – yes, this is unusual but taking the mickey out of me for it just reminds me I’m different and makes me feel sad for being me)
Take it step by step. Why is your goal important? If it is about making sure your child is healthy then of course. If it is about conforming to what you think you should be doing as a parent then challenge yourself!
In our home, the aim is not to get our son to eat everything or eat certain things that we know are good for him. We offer simple choices between a couple of things that we know he likes. Whenever we introduce a new food we keep it laid back. Mealtimes may not be the best place to try a new food – keep mealtimes safe and predictable. Try new food as an activity on its own where it is fine to have an extreme reaction – positive or negative! It’s also fine to change your mind or try something at a later date. Our son knows that green leafy vegetables often taste bitter to children and that as he gets older the taste may change – he finds this interesting and is happy to consume spinach as part of a scientific experiment on taste and ageing.
Our family believe that food is an essential part of life. We need nutrition to live healthily. Apart from that we do our own thing!
I’ve always known I am me. I’ve also always known I am different to many other people. It has been hard to put my finger on it. As a young child I wondered whether it was because I was too clever – I was thriving academically at primary school – this was before my experience of the education system went terribly wrong! Or maybe I was an alien because I certainly didn’t seem to be on the right planet at all. Or perhaps I was a psychopath who was manipulating everyone she met with her constant conscious processing and analysis, and superficial charm that enabled her to pass off as normal when she very clearly wasn’t.
Of course, it became apparent that my difference is very real, but also very easy to explain. I am autistic. I have always been autistic and I’ve viewed hospital notes from around the time of my birth and listened to my parents accounts of how I was a slow feeder that didn’t like being held or comforted. In fact, there is nothing in my life’s events that cannot be accounted for by my autism and these early accounts of my atypical sensory processing are the start of a lifetime’s worth of examples of how my differences have created opportunities, challenges, misunderstandings, joy and normality for me.
Unfortunately, I did not know I was autistic for a very long time. I only knew I was different. I did my best to try and fit in and the resultant masking of my autistic traits played havoc with my wellbeing. Deep inside, I felt that I was probably ok – how could I not be? I was kind, I was thoughtful, I always did my best, I tried hard. But I also related strongly to the little boy in the Hans Christian Anderson story ‘’The Emperor’s new clothes”. Was I the only person on the planet who could see what was actually going on? Why when I helpfully pointed out mistakes or inaccuracies or called people out on the bullshit they were preaching, did they act as if what I saw was wrong? Why in this world where I had been brought up to be truthful was I being told to buy into the lies? My sense of probably being ok was gradually eroding into a sense of there being something fundamentally wrong with me.
Again, I struggled to put my finger on what it was that was wrong with me. My sensory processing is not typical of many peoples and I don’t experience things like a gut feeling or awareness of my gender, sexuality or even my likes and dislikes. Everything I “know”, I know in my head. I am female because I have a female body – I have no ability to comprehend what trans people mean when they say they know they are in the wrong body because I have no idea whether I am in the right body or even on the right planet! I am heterosexual because I love my husband and am attracted to him, however I do not even look at other people and sense attraction towards them because that would go against my commitment to my husband who I love deeply. I eat the food that annoys me the least and that I can tolerate in my mouth. Growing up I also knew that I didn’t “get” lots of the stuff that other people intuitively got. My attempts to understand and soothe myself took me down a variety of constructive and destructive paths and some of those led to long-term involvement from mental health services.
I have tried fitting in with a variety of groups of people, medical diagnoses, philosophies, and beliefs throughout my life much as most people do. The desire to know where we belong seems universal throughout humankind regardless of neurology or any other part of our identity. Although I developed an ability to camouflage my autism, I always knew when I wasn’t being genuinely me. My lack of a gut feeling doesn’t mean I don’t notice things, only that I notice in a different way. People use the expression “like an alarm bell going off” and I understand why they use that metaphor. When I meet someone or go somewhere and things don’t quite fit as they should, I experience an uncomfortable, edgy, clanging, noisy sensation that warns me something is definitely not right. I get this feeling when I meet people whose words and actions demonstrate different sets of values. It is more than the usual difference between the two that most people show in normal day to day behaviour – the typical modifying of our behaviour to act appropriately in a variety of situations – not being rude or insensitive and so on by kerbing our urge to swear or tell the truth regardless of consequences. This is something fundamentally different that sets off alarm bells for me. The contrast is as out of place as a spelling error on a typed page or a tiger showing up in my local woods. It is a concrete mismatch that is quantifiable and nothing to do with feelings. I know it (in my head).
I also “know” absolutely solidly when something is correct. I know my autism diagnosis is correct because I can (and have!) matched every single scenario in my life against that fact to test if it is accurate – and it is. And that is how I have come to write this blog. I have more of a sense of how I am as well as who I am. The label is so correct, I forget I am autistic a lot of the time, in the same way as I don’t consciously consider myself British or female or Caucasian as I go about my day. These things only matter when I am facing advantages or disadvantages based on these parts of my identity, the rest of the time they are irrelevant.
Gaining the correct diagnosis has righted a lot of wrongs, particularly with regard to incorrect psychiatric diagnoses. The hardest wrongs to right have been the labels I have attributed to myself, based on the lies I have believed that others who have misunderstood me have said about me and to me. The process I have been through post-diagnosis has been intense and all consuming at times.
It has left me with a sense of freedom to move on with my life. I am solid in my identity – I have always been me all along. The mislabelled bits were still me, the camouflaging bits were still me. I have desperately tried to unpick and categorise what is autistic me and what isn’t. How should I be authentically autistic, how do I unmask? I want to be able to be myself and act in a way that is more noticeably autistic at times e.g. by asking for people to adjust the volume or lighting in a meeting or to be able to regulate myself in whatever way works without feeling ashamed of flapping my arms about or bouncing up and down. I question whether I am too damaged, or too untrue to myself, or whether I am ashamed of my autistic identity because I can’t do these things comfortably. I am not. Every single bit of this is authentically me. No one is purely their neurology, no one is only their gender or their job title or their sexuality or religion. We are a mixture of all of these things and to try and stick the autistic bit in a separate category just doesn’t work for me.
I have seen the jigsaw puzzle piece imagery associated with autism and I don’t relate to it personally. I am my own puzzle that is still being put together. I have no idea what the picture will be and in fact I have thrown the box away! My autism is not a piece that was missing, it is more like the glue that holds all the pieces together. It was there when the first piece was laid and will be there until my puzzle is finished.
A few weeks ago I hadn’t heard of self-isolation but so far I am loving it! I have been enjoying contact with other people more than I have ever done.
That sounds contradictory and even a little facetious I suppose, and in no way do I wish to belittle other people’s experiences. It got me thinking though about how we all take things for granted and how some autistic people will have so much to offer the wider world at the moment. This is because some of the shared struggles in our society during the Covid-19 pandemic are very common daily challenges for autistic people, who have had to learn to cope with them well. I am delighted that so many people are working together and talking about a better world that we can create out of this dreadful and terrifying situation. This is a time for people to listen to each other and learn from each other and share with each other as equals. There may be some viewpoints that we don’t usually hear, or quite likely that we don’t usually listen to because of the biases that exist in society and in our own subjective views of the world.
Now is an ideal opportunity to come together and understand each other better, to learn from each other and have a go at seeing things from different viewpoints. We can all learn from this shared experience of the Covid-19 pandemic. In every other species in the natural world, diversity is a positive thing and an essential component for survival. Isn’t it about time humans caught up?
Before I go any further, we need to discuss empathy. Lots of people have written about autism and empathy – and far better than I can attempt to. You may have heard that autistic people don’t have empathy because they lack theory of mind and can’t imagine how another person thinks and feels; you may have heard that autistic people have too much empathy because they feel absolutely everything. There are different types of empathy anyway – emotional, cognitive and compassionate, for instance. There is no universal definition of how empathy works for autistic or non-autistic people.
This is my personal blog so I’ll describe how empathy works for me – but remember that we’re all different. Some friends of mine who are autistic feel other people’s emotions so strongly and intuitively they find it overwhelming :
My sensory processing is very different to a typical person’s. I hear, smell and see things intensely and notice the details that others miss – in fact I can’t filter any of this out which makes it tough to concentrate or relax; I flinch and jump at a light touch on the arm or an annoying label in my jumper but don’t notice I’ve left half my dinner on my face! I need to walk and do strong physical activities so that I know where my body is and what it is doing or I’ll bump into things and trip over endlessly. It is frightening and disorientating to feel so detached from my body at times.
And internally, my interoception is such that I have attempted to “walk off” a dislocated knee; I have managed several hours of contractions during labour by using breathing techniques and not a cry passed my lips; I may not notice I am coming down with the flu but I will feel unbelievably depressed instead for no reason. I can feel no emotion whatsoever when someone dies or there is a tragic accident – but then it hits me later and then I appear to be dwelling on it, not letting it go and attention seeking, and surely “I should be over it by now”. I don’t have a great sense of what I am feeling and what I do feel is not necessarily accurate so I do not trust my “gut feeling”, in fact, I may not even have one! So, if I have no idea what I am feeling then how on earth am I going to know how you are feeling?
What I understand is gained by observation and learning. I have read a great many books and I have a career in working with people, either in a supportive role, or as a manager. My colleagues include support workers who demonstrate daily how social interactions work; psychologists who tell me “why” people do what they do; psychiatric nurses and psychiatrists who explain “what went wrong” and a multitude of other professionals and families and individuals that I learn from every single day.
So I have developed a good knowledge bank about what people do, some of the potential reasons why, and what an appropriate response should be. And even better, in work this stuff is written down and as long as everyone is consistent and responsive to learning and adapting, then if you follow a person’s support plans or risk assessments you can interact in a meaningful way with people who are really distressed and struggling with communication. It makes me look rather good at all this people skills stuff!
With all this mass of sensory information bombarding me, and no filters; and all the mass of knowledge I need to take on board just to know what to do, things can become overwhelming. I need to compartmentalise things and create rules and systems to work within or else I can’t function. A bit like having some easy to identify folders and sub-folders on your laptop. I am very open-minded because I don’t have filters like “socially appropriate interests for a middle aged woman”, or “cake isn’t a suitable breakfast food”, I don’t get caught up in the excitement of talking about a television programme with colleagues – it creates no emotional response in me. I am not impressed by which car would make me appear most successful or cool – I look at the practicalities of it instead. I am not interested in the hierarchies many people value.
My belief system is one of my own. I have explored religions and share many principles and ways of living my life with a number of different faiths and beliefs but ultimately I don’t believe in any of them at all. I do believe in “doing the right thing”, in “being kind” and enabling people to be themselves so long as they are causing no harm. I am absolutely solid and unswaying in my beliefs. People call this integrity. This is what causes me to be the person speaking out against injustice even though it could be detrimental to my career. It means that I can regulate my own behaviour and act in a fair and consistent way towards other people because I have no ulterior motive and I’m not doing it just to conform or fit in or because I’m frightened of getting into trouble if I don’t.
I don’t “feel” empathy particularly and this can be very useful when supporting someone who is upset or when I managed a residential service for people who displayed challenging behaviour. My reactions don’t tend to trigger other people, there is nothing for their distress to feed off coming from me and I tend to create naturally calm environments around me where emotions don’t escalate because of my interactions or behaviour. I “know” that certain behaviours in another person mean certain things and I combine my knowledge of the individual or situation, and my personal beliefs to create my response to their situation. The down side is, if I have misunderstood or it is a new situation then I don’t know the “rules”. It is also relentlessly exhausting.
Recently I asked a colleague for tips on managing a new situation I had not come across before – the particular type of small talk being used in the Covid-19 pandemic between people who don’t know each other well and want to vent about it. (I am good with talking to friends or family or colleagues about the topic, it’s just this particular aspect I was struggling with). I don’t want to dismiss people, invalidate them or escalate their anxieties but I don’t want to hang around and catch or spread something either! Fortunately my colleague understands me and understands autism so captured it in a way that I understand and can use. She said that when someone random starts talking to me about coronavirus I can use this technique: “Acknowledge (e.g. yes, it is terrible), Divert (e.g. but the weather has been lovely, have you seen all the birds?), Walk away (e.g. I must get going now, bye)” This is a perfect way of managing the situation and explained to me in a way that I can learn off by heart and apply in a number of settings. It also saves me from looking rude, disinterested or going off on a tangent. I have added this to my encyclopaedic knowledge of how to get by in life. This is how I operate. It can feel a bit false and on a bad day I wonder whether I’m some kind of robot and not human, but this is how life has always been for me.
So this is how my empathy works: It is a practical application of doing what is right for the person I am empathising with. I used to think empathy was about finding something in common with the person that we can both relate to and talking about that because that’s how it looks like to me when I observe empathy in the general population. But that can feel very invalidating for the person and is as if I am hijacking their emotional situation, or attention seeking, or making it all about me. I try and avoid that, but it is a difficult balancing act that I frequently get wrong. For the people that know me, it doesn’t matter. They understand that my intentions are good and about being caring, but my actions may appear random, blunt or insensitive. It’s no big deal to them but it holds me back from interacting more with others because of my fear of getting it wrong and being misunderstood. Empathy is extremely complex and difficult to get correct.
There is a place for the “things we’ve got in common” aspect of empathy and this blog will invite the reader to look at autism from that perspective. I respectfully ask that if the reader is not autistic they don’t assume that because we have things in common we must all be “a little bit on the spectrum”. Try and appreciate the complexities and fundamental differences behind the diagnosis. My husband has backache at the moment and is feeling tired, he is not however pregnant. Or even a “bit” pregnant! The important message I would like to share is that fundamentally there is one thing we have in common regardless of our neurology – and that is our humanity.
I like things to be predictable. In fact my husband frequently tells me that I must stop trying to second guess everything all the time. Clearly he doesn’t appreciate the total carnage that would occur if I were to do that! I have to know what is going to happen so that I can plan. If I don’t then how can I ever know what it is I am meant to do? Anything could happen! In fact, my husband is fantastic and he knows that in my unfiltered world I need some predictability and routine to guide me. We have a calendar on the wall and a magnetic planner on the fridge. They have appointments and anniversaries recorded on them. There is additional information at the moment about our lunch and dinner menu. Outside of this self-isolation period, I would not need this level of detail about our meals. I know that my husband will have something prepared for us that we enjoy – and the fact that we always have breakfast, lunch and dinner is enough information for me. But at the moment, in these times of uncertainty, I need to know that lunch is a veggie sausage roll and salad and tonight we are having spaghetti bolognese, followed by strawberries and yoghurt. Breakfast doesn’t need to be written up. Breakfast is easy. It is always crunchy nut cornflakes for me, after all, how could I possibly know the day was underway unless I had my daily fix? I describe my anxiety around the panic buying in my earlier blog about anxiety and coronavirus, and elaborate on the value of routine in my other blogs too. Our son felt much better about life once he had replaced his old pre-coronavirus routine with a new one – this is shared in my blog about coping well and self-care.
My need for doing things a particular way that is planned and organised has been called many things:
• Control freak • Highly organised (when it makes sense to others) • Highly disorganised (when it only makes sense to me!) • Inflexible • Procedure led • Consistent • Rigid • Insensitive • Thorough • Diligent
As you can see, interpretation of why I do things the way I do is open to whichever agenda or opinion you wish to hold. I can appear to be all of these things. I can actually be all of these things – and none of them – and they vary as well. Even though I love a rule and would categorise and break everything down into its tiniest elements if I could, I have to accept that human beings do things for a number of different reasons and these reasons are not fixed across one person, let alone across the entire human race. Me included.
The more unpredictable a situation is then the more people will create a routine so that there is some predictability. I loved reading survival books when I was young. All about how to live off the land after a plane crash with only a small tin containing a magnetised needle, a coil of wire, a match (with the end dipped in wax to keep it dry) and some other handy items. I also know which bear to run away from and which to make yourself look big in front of! I know how to turn urine into fresh water and how to skin a rabbit that I have caught in a noose (using that handy bit of wire). All of this has been completely and utterly useless in my life – particularly as a vegetarian. I should have studied books on how not to get bullied, not be so gullible and how to make friends! However, I do know that in a survival situation it is important to structure your day. Shipwreck survivors are likely to have created themselves a routine and stuck to it rigidly, even through the days of dark depression and flagging motivation. The world feels very frightening to people at the moment and the language and media coverage used to share information about the coronavirus pandemic often conveys fear. Every day can feel like a survival mission for some people. When you consider the difficulties of sensory processing and add to that the particular way imagination works for a lot of autistic people then it begins to make sense why autistic people experience so much anxiety.
Another way that people create predictability is by their behaviour. Sometimes I will plan and structure my outside world to give me a sense of order and control and sometimes I will provide my own internal predictability. This is important to me because I don’t have a great sense of what is going on inside of my body due to poor interoception and I have terrible proprioception as well, which results in countless bruises that I don’t remember getting from where I have misjudged doorways or fallen over my own feet.
I took my son to a trampoline park last month. We both enjoy a good bounce and he challenged me to a jousting duel on the balance beam above a pit of foam. I was wearing black socks and I stepped confidently up onto the black beam and held my pugil stick ready in my best jousting pose. My son approached from his end of the beam and all of a sudden I realised I was absolutely frozen solid. I had taken my glasses off for safety reasons and I could no longer see my black socks on the black beam and although I knew my feet were down there somewhere, I could not make them move despite shouting at them silently inside my head to move forwards or back. There was nothing more I could do. I had to suffer the humiliation of asking a teenage lad to knock me off the beam where I was stuck and into the pit of foam so that I could crawl out!
This experience made me realise how easy it is to misinterpret the actions of autistic people and it reminded me of a training session I attended where my partner said I was refusing to take part in a particular activity. In fact I was unable to despite my best efforts. The task involved using a mirror to complete a simple drawing exercise and in the same way as I couldn’t move those feet of mine because I couldn’t see them and therefore had no sense of where they were, I couldn’t make my hand draw when I could only see it in the mirror. I find mirrors and videos of myself extremely distressing. I have absolutely no sense whatsoever that the person I am looking at is me. I have been looking at some old photos recently and trying to make myself connect in some way with that person in the picture. It is difficult. My inability to recognise myself and move my body or “comply” as so many professionals like to call it can look like I am being lots of other negative words like “uncooperative” or “refusing”. It makes it seem like a choice when it isn’t. It adds a label to a person that does them no favours and offers no help or understanding.
Now that you have a deeper understanding of what it is like living in my body, you may understand why it can feel so reassuring to create predictable and repetitive sensations. There are as many reasons for this as there are for my need for external routines, and they vary in a similar way too. People sometimes use the word “stimming”. It’s not a word I like because it makes something that is so central to who I am (yet keep more hidden than almost anything else I do) feel pathologised and a symptom of something that is wrong with me. I feel ashamed of myself both for doing this in the first place and feeling like this about it, but I have a deep respect for the people who are confident in their openness and ease at being themselves. I would like to live in a world where one day a person flapping their hands in excitement or to relax is seen as normal. Self-stimulatory behaviour as it is sometimes known can be many things including:
• Hand flapping • Jumping • Twirling things • Making favourite noises • Stroking fabrics or textures • Sniffing objects • Listening to a repeated noise
There are as many of these as there are people and the purpose of stimming can be to relax, to liven myself up, to feel good, to calm myself down, to help myself think, to give myself a sense of familiarity and control. It is a need that I have and not something I have a choice over. I don’t view it as a problem that I should give up. I don’t have any repetitive behaviours that are harmful to me (unless you count getting your head kicked in for looking weird!) and if I did or if our son did we would try and change them into something less harmful, but I would never try and stop something that is integral to being me or anyone else. Repetitive behaviours are likely to be increasing across society during this time of uncertainty. Maybe the reader has their own examples? Perhaps you are nervously tapping your leg up and down more at the moment? Or smoking more? Or biting your nails? Maybe that relaxing bath with the essential oils every evening is vital for your wellbeing? Perhaps you’ve taken up knitting again and find the repeated motion of the needles and the sound of them clicking together rhythmically is soothing? Don’t be surprised if your autistic friends, colleagues and family members feel the same and please don’t jump to the conclusion that an increase in repetitive behaviours always means that something is wrong with them. There is something wrong at the moment – the Covid-19 pandemic – and it feels perfectly rational to me to increase my coping strategies because of that. I have a huge selection of coping strategies at my disposal and I try and use the healthier ones.
I have a tendency to take things literally and for me, this is nothing to do with a lack of ability to understand information. I’ll share a piece I wrote recently that describes how this works for me and is pertinent to the current world situation.
So with all this fear, why am I enjoying the social isolation so much? I see inspirational quotes on social media about how we’ll all one day be able to hug in the streets, meet for coffee and engage in small talk yet again. This is not inspirational for me. In fact, if you asked me to describe what a really bad day was like, then those three things would be in there, and pretty near the top! But I am enjoying socialising online and I have been in contact with old friends that I’d lost touch with and I’ve even been on the phone. Yes really. Did you know that you can actually speak with people out loud down a phone and they will talk back? It’s not just for using as a diary and handy internet search tool. I am realising that I am far more sociable than I ever imagined. The threat of having to meet face to face has been completely removed and I am free to communicate from another room! Let me explain why this feels so great:
I like people. I find them interesting. However, (and please reflect on the earlier part of this blog and how my senses work and how I have no filters and a tendency towards a literal interpretation of events, before you take this personally and pass judgment) – people are overwhelming.
Imagine yourself in an empty room with nothing going on. Gradually, people enter the room. It may not bother you, but try and think about it through my senses.
People smell. Every single one of us has our own smell and many people top that off with fragrances too. Imagine all that mixing together and having to be processed. This processing alone will use up some of your capacity to function. Have you ever tried concentrating when there is an unpleasant smell in the room?
People are noisy. Laughter and shouting feel the same to some people – e.g. frightening. All the noises combine and it is difficult to know which you should be paying attention to. So on top of processing the smells, you now have to calm yourself from feeling scared because of the noise and work out what to tune in to.
People move about and are unpredictable. They touch you out of friendship and to build rapport but that hand reaching out may feel uncomfortably gentle and tickly but if you flinch you will look rude so you have to switch a bit of yourself off to cope with the potential touch. So you reduce your capacity for socialising even further by switching a bit of yourself off.
…Another bit of you is processing the smells. Another bit of your capacity is calming yourself down because of the noise. That bit is also saying to you that you must act “normal” and not do anything too autistic to cope with all this like flap your hands about. You are also trying to listen to the correct conversation.
Then the person makes eye contact with you. This feels physically painful and you feel nauseous and panicky. You know that eye contact is normal so you have to use a bit of your capacity to make sure you are doing enough eye contact, at the right intervals and for the right duration. It would be easier not to but that feels rude. Think for a minute about a scenario at a job interview, for instance. Imagine being asked a difficult question that requires thinking. Where do your eyes go? Most people’s eyes will move from eye contact and turn to look slightly upwards and away from the person (or downwards and away from the person if they are feeling intimidated or told off). It frees up some capacity to think.
I haven’t even covered all the senses yet but am conscious of being repetitive. Now add in some factors like taking things literally and struggling to know how you feel or how to show empathy appropriately.
I hope this has shared my experience and helped make a point without being too preachy. My avoidance of social situations is nothing to do with liking people or being aloof. My outward expression because of my poor interoception may make me appear to be disinterested or bored or unemotional but that is not the case. I avoid social contact because it is so bloody exhausting!
What I have found is that this reduction in social overwhelm has increased my usually overloaded capacity. I am able to relax and enjoy things and my focus has been intense and productive. I also know that I am good in a crisis. A line manager once said to me “I do believe you thrive in a crisis” and she was right. When others are reacting emotionally, I am calm and logical and continually seeking a practical solution. Sometimes this is annoying for people. Sometimes people don’t want me to solve their problems, what they want is a listening ear and a person to just sit near them that they can share it with and I am very good at getting this wrong and defaulting to being helpful and trying to fix things. At the moment though, my traits of being calm, following instructions and being able to hyper focus are useful and valuable. Some of my most commercially successful work has been done at times other people would have taken off for compassionate leave. Having a focus gives me a purpose and it regulates me because I know what it is I am meant to be doing. It channels my energy. I was told once that I should take it easy at times of high stress. This was said by a mental health professional that was viewing my undiagnosed autism as a psychiatric illness. This is good advice for some people but not for me. There is always a balance to be found though between focus, interest and obsession. I explored the benefits of seeking information in order to cope with situations in an earlier blog and noted that it is important not to become obsessed. Here are some tips:
Self-care and regulating myself is part of my daily routine. It consists of activities likes walks and exercise and meditation sessions but mostly from integrating self-care as a way of doing things rather than a special activity I have to plan. This is much better for me because if you do things mindfully, for instance, you don’t have to find time for a mindfulness session. I’m more likely to stick at things and remember to do them. My hobbies are important at the moment and I am delighted to see that it is becoming “normal” again to have hobbies. Years ago, people would ask each other what their hobbies were and they’d take pride in them. They weren’t always competitive things but were activities that provided a focus and brought enjoyment to the person. Hobbies have gone out of fashion in mainstream society but autistic people frequently have hobbies. Sometimes this is pathologised in my personal opinion, and is referred to as a “Special Interest”. I have friends who are comfortable and proud of the “Special Interests” label and they quite rightly say that their special interest is far more than a hobby. It is something they have an intense and deep knowledge about, something that brings them far more pleasure and satisfaction than the hobbies people tend to have does. I agree with them on that and to call their interest a hobby would be disrespectful and invalidate the importance of it to them or their incredible levels of knowledge, commitment and skill. This is the great thing about people though. We can disagree on things. I am totally cool with calling my friend’s special interest a special interest and she calls mine a hobby. There is no right or wrong and we both know what we mean.
What is important is that everyone can benefit from finding an interest or hobby. It gives a break from the day to day mundane parts of life. It provides respite from the stresses and strains going on around us. It enables us to put our energy somewhere productive and creative. My hobbies are fairly mainstream and this is not uncommon in girls and women who have autism. We tend to be more affected by social pressures and choose to pursue interests that don’t make us stand out any more than we already do. What I will say is, enjoy your hobbies and take an example from those unconventional people in society – autistic or not. I’m pretty mainstream with my hobbies compared to some people but still a little unconventional. Do whatever it is that brings you joy. If your interest is motorbikes and you’re a woman then so what! If you have a secret stash of animal bones in your garden that your husband doesn’t know about (oops! until now), then who cares!
These are strange times. People keep telling me this. They are right.
I feel fear of the unknown everyday because I am autistic. I crave predictability and feel stressed when my routine changes. I want to understand everything I can so that I feel in control, but there are some things that need more than an explanation to sort them out. I crave solitude and time on my own so that I can have a break from the overwhelming world. So please don’t feel sorry for me sat on my own or when I turn down an office party – I like being like this and I don’t want to be more sociable, it’s ok and I am alone but certainly not lonely.
There are valuable lessons to be learned from each other and I include all people in this – of every neurology, gender, sexuality, race, age or IQ. I secretly (well not so secretly now!) hope that many of the quietened voices in society will be heard during this time of reduced social contact. Those people that don’t thrive in a busy, social world; those people that are problem solvers every day of their lives; the innovative thinkers; the ones who find simple pleasures in life with total disregard for perceived status; the ones who aren’t heard because their voice isn’t communicated through speech or people simply don’t listen to them. If we are going to make a better world through this crisis then lets make sure everyone is enabled to play a part in it this time.
I have always been autistic and assumed everybody else on the planet processed, understood and experienced the world as I do. It was quite a shock to find out they don’t!
My sense of being intrinsically different to my peers has been there for as long as I can remember and this difference has been interpreted in many ways – weird, mentally ill, stupid, lazy, too intelligent for her own good! The list goes on and I hope you stay with me and read my future blogs where I’ll explore some of these themes in more detail.
Almost everyone I speak to is using words like “unusual” and “strange” to describe the current situation where coronavirus is a very real threat and is affecting our whole planet and how our daily lives function. There seems to be high levels of anxiety and fear, there are so many unknowns, and all predictability seems to have been lost from our routines.
Empathy is a topic for another blog, but I can categorically announce that ‘Yes, I empathise’. I am very definitely with the rest of the human race on this one. In fact, my normality is full of these type of anxieties every day.
I totally understand how scary it is to not know what is going to happen and when or how dangerous this dangerous thing is. I relate to the way people are seeking information and obsessing about facts and trying to work out the statistics of the Covid-19 situation in Italy and apply them to the UK. I appreciate how this has become all-consuming for so many people.
I am glad that many people are looking to make a better society and work together during the pandemic. I’m one of those people. I have some useful skills that may help. These skills can be interpreted in many ways too, just like my autism is.
I have worked from home for more than 10 years. I still attend a workplace for meetings, training that I am delivering or attending, or other purposes that require me to meet colleagues and clients face to face. I am very, very good at working from home and I see friends struggling at the moment in the light of the government advice to work from home.
We share similar challenges – they don’t like working from home because of the distractions. I don’t like working in an office for the same reasons!
I find the noise of the office disrupting – people laughing in the corridor for instance. My senses are working at a hypersensitive level because of my autism and are even more heightened because of my stress. Every noise that disrupts my concentration sends me back to square one and I have to start my work again. I also find processing the smell of multiple perfumes and aftershaves, combined with cooking smells and everyone’s individual body smell is overloading. The lights are bright and my employers have given me my own space to work in with a lamp that I can adjust and we have strategically placed the notice boards so they don’t distract me. My proprioception is terrible at the best of times and the office is not as familiar as my house, so I bump into things even when I can see them. I have two bruises on my left arm – the first from where I completely elbowed a shelf off the office’s bathroom wall. The second from where I elbowed the same shelf off the same wall later on that same day after it had been fixed. My house is set up for my family’s sensory needs and I find it conducive to good concentration and productive output.
My employer is excellent and suggested I customise my workplace office space to be more like my home office. They even went as far as saying we could repaint it. I bring a cushion to work as I find sitting at a desk uncomfortable, I bring some scented inhaler tubes to help regulate myself when I need to (see photo) and to mask the smell of when my boss cooks chicken for his lunch. I also have my noise cancelling headphones (but rarely wear them because I feel so very self-consciously autistic in them). I get up and move about when I need to, we’re a diverse workforce anyway with a wide variety of personalities, skills and experience – this means inclusivity comes naturally. Colleagues understand me and appreciate me, and that is after all the biggest reasonable adjustment needed at work – the adjustment of attitude!
I would offer my employer’s advice to those of you working from home and finding it a challenge. See if you can make it more like your workplace. Unless you are a brain surgeon or a builder, then don’t – Your family will never forgive you.
Some of the sensory regulating items I use when I am in the office.
Routine and Structure
My job consists of tasks that are reactive to situations. These need to be done in a procedural way and meet certain standards and deadlines. This is easy enough to emulate at home or the office. My job also involves thinking about things, strategizing and planning and lots of writing. I don’t do this well sat at a desk for a solid few hours. Here’s a typical example of how I work when I need to create something:
Read all the information I need to process whilst sat comfortably
Walk around and think about it intensely for a few minutes maximum, maybe do some exercises and move my arms and stretch a bit (my hypothesis is it helps shake the information into my brain and sorts it out!)
Do a totally unrelated work task that is mundane, routine and very process led
Have a walk outside in the fresh air, done mindfully without getting involved in any mental planning
Do an unrelated mundane/routine work task
Sit down and concentrate fully on the creative piece of work and produce it in whatever time it takes
Have a walk outside (using mindfulness techniques)
Repeat the above
My working day is far more physically active than many people’s even though I do a ‘desk job’. When I am working from home, I do not sit at a desk at all. To an outsider, I look like I am faffing about doing nothing then all of a sudden intensively working. This was very misunderstood at school and I was told that I didn’t deserve my good grades because I made no effort or that I left things until the last minute. This is untrue. I particularly dislike the “leaving things until the last minute” quote as it is both slanderous and technically inaccurate. It is as ridiculous as when people lose things and say, “it’s always in the last place you look”. Of course it is, even I wouldn’t carry on looking in other places once I’d found something! Funnily enough, pointing out these helpful snippets of information didn’t improve my relationship with school one bit.
My tip to those working from home is this: Give yourself the structure that you need. Whether that is having very set hours to work in, even putting on your work clothes if that helps, plotting out a daily schedule and producing a consistent amount of work in that time, or whether it is like me and mixing the day up, coming back to things, taking time to process information and taking time to intensely focus. As long as your job responsibilities are met in terms of workload, responsiveness to situations, availability and time, then how you do it may not have to include sitting down for several hours consistently producing output. I think children are similar and school classroom based lessons aren’t necessarily conducive to achieving your potential for many people.
I plan my day intricately. Not with a timetable, because that doesn’t work for me. The things I do take however long they need to take. But I always know what I need to do and ensure I cover all tasks. I prioritise by starting with deadlines that cannot be moved and plan how to meet them. I then do the reading and research I need to do so the information goes into my brain. I can leave it there and get on with very task based activities in the meantime while my brain is processing the information. I take time to move, eat, drink, as required. These are all things that naturally regulate me at home and fit comfortably and naturally into my day. In the office I need to structure these regulating activities much more, so I may take two minutes to do a mindfulness exercise or walk to my car to fetch something so that I can stretch my legs. I may smell a scented oil to liven myself up or calm myself down or fiddle with something that feels comforting so that I can concentrate better.
This type of sensory regulation is common for autistic people. When I am in an environment that feels stressful, my senses are working overtime and I have to ensure I am very proactive in regulating them. When I am in an environment that is comfortable, it tends to have it’s own intrinsic regulating features and I don’t need to have as many breaks to regulate.
Although autistic people can experience hyper and hypo sensitivity in quite noticeable ways, everyone has senses and everyone’s senses are affected by stress. Think about what happens if you are scared. Your ears pick up more sound, your muscles get ready to fight or run away, you are hyperalert. I recommend finding time to pause and notice what your body and senses are doing and ensure you regulate them. Remember to eat, remember to drink and to move about.
I find the social aspect of the workplace challenging. I love having a laugh with colleagues, I love putting the world to rights and debating how we do things and coming up with ideas. I have always been passionate about the industry I work in. I have good skills in managing teams, delivering training, talking with other professionals and contributing to meetings. These are all situations where there are very defined techniques and frameworks for working within and I can learn and apply the rules that make me a conscientious, fair and open-minded colleague.
What terrifies me though is the small talk. I don’t watch tv. I have had a lifetime of knowing that people find me annoying. I calculate and rehearse so much of what I say so that I get the tone right and don’t offend people. I have the sort of imagination that doesn’t create things from scratch, instead it latches onto something I can see or that I know and keeps hold of it like a dog with a bone and can make me appear creepy or like a secret stalker! I will remember the one bit of small talk that worked with the person e.g. an ex-colleague I worked with in 2007 mentioned once that she liked parrots and her parents kept them as pets. We hadn’t seen each other for 13 years and when I heard from her recently I asked about the parrots, just to be polite. It felt awkward, slightly nosy and I instantly wished I hadn’t asked as I felt I had been intrusive and plain weird and probably appeared to be far more interested in her life than I am.
Therefore, I can offer no advice on how to replicate this whilst home working sorry. I am delighted to be avoiding it and my stress levels have reduced at the thought of not going into the office for a few weeks. I imagine some colleagues will be feeling the opposite and will be missing the social contact.
My skills and dedication to ‘getting it right’ and not mucking up social contact have been learned the hard way. I will blog more about this one day. Talking with someone face to face is the toughest communication for me. Talking at them is fine i.e. giving instructions, active listening, training or presenting – all these are much easier than ‘having a chat’. It is the two-way bit that I struggle with and I often rely on clichés, learned techniques and observation. I don’t recommend observation as a good method. Randomly starting a conversation with “did you see that duck on the roof?” doesn’t work very well. To me it is far more interesting and relevant than “did you see Eastenders last night?” but we’re all different I suppose.
I am however, good at written communication. I can see patterns and themes in a piece of writing so I can identify tone and intent quite easily in something that is written down where I wouldn’t face to face. I have a tendency to ramble on in my personal written reflections but am quite skilled at writing concise work emails that demonstrate the appropriate tone. I have even written training materials about this. My tip for new home workers is this: You will be using email much more than usual. It is not the same as face to face contact. Be precise, take care with humour as you don’t know how it will be perceived, still do the small talk if that’s your thing and be polite. Remember that you do not know what the person at the receiving end is feeling or doing when they receive or read your email. Popping your head round the office door to ask for something by saying “oh my goodness, I’m so busy, if I don’t get those figures now I’ll never finish on time” comes across completely differently to sending the same words in an email that a colleague reads whilst busy with their own workload and demands.
I started this blog with the intention of exploring the title in more depth. I’ll leave you to do that for yourself instead but I’ll come back to it I’m sure.
I read lots of information on how to help autistic people that is written by non-autistic people. There is rarely a role reversal of this because our society is biased towards neurotypicality. I have lived as me for decades and I’ve had to make it work. I have a successful career, a loving family, varied hobbies and interests. I have enough money to live the simple life I enjoy.
Like many autistic people, I struggle with seeing the bigger picture. Personally, I believe it is because I have to build it up from all the tiny bits rather than see it as a whole. I get there, but at a different speed and by a different route. Today walking across the fields with my dog at 7am, listening to the birds without the usual background noise of traffic, smelling the damp earth and feeling the rising sun on my body I was glad that I struggle to see the bigger picture and tend to focus on the finer detail. I was truly content. At that moment, nothing could make my life any better – nothing at all.