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Why there has never been a better time for me to be autistic, and for you to learn what it’s like…

What it feels like to be autistic, the bits I love, the bits others don’t love, and how it all works for me!

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.

Celtic knotwork on Nevern Cross in Pembrokeshire.

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 wish I could include this as a video to share the sound and vision of the wheel turning and the water pouring and the engine throbbing.

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!

An old favourite bike and an old favourite cat! The bike was donated to WWMP a mental health and motorcycling project.

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.

4 replies on “Why there has never been a better time for me to be autistic, and for you to learn what it’s like…”

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