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.
“Mummy, I’m happier now I’ve got a new routine”. This is a relief for us all in our family. We are no different to any other family at the moment coping with these strange and uncertain times. Some of our challenges may feel a bit quirky, unusual or just plain selfish to other people but they are our reality in the same way that every single individual, couple and family will be having their own unique set of challenges at the moment.
We were eating our Sunday dinner. This was important. My husband had cooked a favourite roast meal for us, the same as on any other typical Sunday. I made sure that my veggie sausage acted as a gravy breakwater so that no gravy seeped on to my roast potatoes. What I would have given when I was young to have those food dividers on my plate to ensure separate foods didn’t touch! But back then when I was growing up, it was called being a “fussy eater”. My son, who is a teenager and now bigger than me; and who enjoys wrestling; cartoons that involve lots of swearing and gross-out humour; and is planning how he will attract girls by developing a muscly chest and holding our cute dog in a photograph for his tiktok account (I kid you not!) has mashed potato not roast. And it is lovingly crafted into the shape of a steam ship by my husband – complete with upright sausage funnel. This familiarity brings us pleasure and reassurance. Even the dog is happy, she recognises Sunday by all the visual, scent and auditory cues that go with our weekly roast dinner and she’s eyeing up her bowl in readiness for some leftover veg. If our son settles down with a partner when he is older, I hope they have skills in making sausage and mash steam ships!
Our son announced to us that he was happy because he has a new routine now. He listed his routine and although it didn’t sound that educational, healthy or varied, it was a good solid routine that would fit into these strange times and add some predictability and control for him. It is like this:
Watch a cartoon
Play video games
Go outside for the afternoon
Watch YouTube videos
Watch a comedy programme or a car programme
Bedtime story with dad
In fact, it is a fantastic routine because he has created it himself and we can add in various bits and pieces to his day that won’t upset the routine but will add variety and balance. For instance, the YouTube video watching time can be used to slip in something educational. The video games time can be spent online gaming with friends – including old friends he has lost contact with. The outdoor time can be used for all manner of activities that will promote exercise and wellbeing.
Before this new routine had become set in our son’s day, he was extremely restless and although I feel I shouldn’t say it; demanding. He cannot initiate activities for himself and it was an endless “mummy” (said in a very particular tone that consists of 4 syllables and a whine) “what shall I do now?”. This was mostly because he did not know what to do but also because he freely admits he likes saying “mummy” like that. He tells me that he finds the sensation in his mouth and ears very satisfying. It probably also creates a stronger reaction in me than his normal chatter if I’m honest, and as someone who is not particularly demonstrative or outwardly emotional, he possibly enjoys seeing my lack of patience escalate whilst I am trying to look calm and normal! Of course, getting fantastic sensory feedback from certain sensations can be very stimulating and if you repeat them endlessly it can create its own sense of calm, predictability and control – and just plain, feel nice – which is important to remember during these times where so much doesn’t feel nice because of the anxiety whirling through society. I am sure an increase in repetitive behaviours is a fact of life for many autistic people at the moment. His new routine hasn’t stopped him asking questions or seeking reassurance about what is happening or needing prompts for what to do next but it has helped him feel slightly calmer and helped us as parents understand him better which means we can respond in a more helpful way. It means we can concentrate more on our own self care which is vital, particularly when you are all under one roof. I need to wind down at the same time as our son winds up in the evenings and this can create quite spectacular meltdowns from us all if not anticipated and proactively managed. I’m not saying it will avoid overload or overwhelm but it has reduced the impact of it.
My own anxiety about the uncertainties has increased too and of course my autism is affecting how this looks and feels. I imagine I have the same anxieties as the rest of society about getting ill and seeing loved ones get ill. And the whole, massive, almost infinite box of “what ifs?” and “whys?” that is sitting directly above my head, drip feeding my brain at the moment. My routine hasn’t changed much and some pressures have been reduced because I thrive on working from home and my job is safe, my employers are fantastic and I have a valued and important job that is enabling me to focus my coronavirus anxieties and the need to plan, control and understand what is going on into something positive, useful and beneficial. It also means I can leave Covid-19 at the metaphorical office door when I finish work and I can focus on other things.
It is important for me to have breaks from interests and I crave balance in my life constantly because I know it benefits me. I have a tendency to hyper focus and fixate on things to the point of obsession and this can be detrimental to my wellbeing so I need to compartmentalise things so that they don’t take over. “Broad rather than deep” is my mantra at the moment. Although I readily admit that my ‘normal’ depth is probably deeper than most people’s – I can’t just let it lie, I have to explore, find out and see how everything works. I can hear my mum’s voice berating me “you have to fiddle with everything don’t you, why can’t you just leave it alone instead of taking it apart and breaking it?!” I have always been an analyser.
Social distancing. I had never heard of this phrase two weeks ago, but I am loving the experience. I am absolutely not being facetious about this. I have been more sociable than ever before. I have reconnected with old friends, colleagues and acquaintances and I’m enjoying the online contact with them. What makes this work is that there is no expectation that we will have to meet face to face. I avoid friendships and going out in groups because I find it so painful not knowing what to do and say and it reminds me that I am different – and that reminds me of every negative experience I have ever had of being weird, different and an easy target for bullies or teasing.
Our son is from a very different generation. Differences are more accepted and he has grown up with ‘different being normal’ in our family. He is far more self-assured than I am and he is missing his friends and the face to face contact and being able to run around with them and play fight and hit each other and muck about and wrestle them. Strong proprioceptive input is important for his sensory regulation and although I am a middle aged woman and smaller than my son and therefore not a good wrestling partner – particularly if you take into account my accident proneness – we need to find time for lots of strong hugs and squeezes and physical work like digging the garden and moving firewood and bouncing around on a gym ball. He also misses talking with his friends and the PlayStation is a wonderful tool at the moment because he can play online, (combat games mostly) and pop his headset on and talk to them. It does make the house feel rather small though with his put-on Cockney accent shouting orders at his platoon to take down enemy troops!
Education can wait. It can be done by stealth. Sneak in an educational YouTube video; strike up an interesting and informed discussion or debate about sociology, politics and the media – there is after all a wealth of information out there ripe for discussion. The biggest lesson I hope he learns from this is how to develop resilience and good coping skills. I wasn’t taught these and I didn’t learn them myself from watching others. What I did learn as a child about coping was not always the healthiest or safest ways to get by and has cost me deeply in wasted years where I no longer thrived and in ‘treatment’ and therapy to put things right. It was far easier to rebalance my missed education. School was not a good place for me and in terms of exam results I certainly ‘failed’ even though my attendance levels were high and I did not miss time because of a pandemic. When the time was right I completed a Masters degree and I have just written out my proposal for the PhD I am going to undertake. It was relatively easy to achieve with hard work and the right sensory environment for studying in. What was much harder to rebalance and is a daily effort on my part is my mental wellbeing.
Self-care through these times is essential and I hope we can make a better, fairer, kinder society because of this pandemic. Even if we can’t, the most important thing for our family at the moment is being together, reflecting on what is important to us and for us and helping each other cope. That is the thing we can influence. We cannot make politicians see sense, we cannot make people follow advice, we cannot learn everything there is to know about immunology and virology and medicine and even if we did it may not change anything. But we can take our time, take stock of who we are and create new routines that work and demonstrate how important it is to take care of ourselves. From that, good coping skills and resilience will come and that will be a more useful lesson in life than doing sums or history lessons.