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“Is dinner ready?” and what it’s like being a mum.

Introduction

“Am I a good mum?” I asked my son.

“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:

Our son always has this meal in this way. We hope that if he lives with a partner one day, they will make this for him too! As he has got older, the number of sausage funnels on the mash ship has increased – otherwise it is unchanged.

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!

We wanted sharp cutlery that would make cutting easier. We also wanted cutlery that wasn’t stigmatising to look at. This is a set of French made cutlery with a tiny bee on the handle which coincides with where your finger and thumb goes.

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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…

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.