Autism and making sense of the “new normal”

My  son asked me to take him to Tesco’s as he hasn’t been out in  public since March. He wanted to know how social distancing works and how our local supermarket looks.

Supermarkets are my biggest sensory nightmare – in fact, when I lay awake in the middle of the night, filled with that particular anxiety that only visits you in the wee small hours; the scenario I play in my head usually escalates along the lines of:  “You know that crap thing you did yesterday at work Emma? – Well, you’ll probably lose your job. – And then you won’t be able to pay the mortgage. – And you’ll lose the house.  – And you’ll have to get a job in Tesco’s!!!” The ultimate peak of this catastrophising mountain that I create out of a very  insignificant molehill almost always includes me internally watching myself experiencing total sensory overload whilst forced to work in a supermarket.

So I mentally prepared myself; made sure I felt regulated and  able to cope with the sudden bombardment of sensory information that would hit me and my son; took a deep breath; and in we walked.

grocery cart with item

It was tough.

I patiently explained; repeatedly, that:

“No they are not deliberately being (insert an expletive of your choice here) – there are lots of reasons why people aren’t following  the arrows”

and

“Some people may be feeling overwhelmed like us – there’s lots to think about – all the arrows, and the 2m distancing and trying to find your shopping – they possibly don’t even realise they are going the wrong way and standing too close to us. I’m sure they’re not doing it to be rude”

But inside I shared my son’s exasperation and was glad that my focus was on making the shopping trip a learning experience for him. It helped me push my own frustration, confusion and fear to one side. Afterwards he said to me “Mummy, I’m glad we did it but I don’t think I’ll do it again”. Inside I thought exactly the same.

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If the world is a chaotic, overwhelming and confusing place in the “normal normal”, then the “new normal” is something else to behold if you are autistic. I have created lots of guidelines and rules to follow that  help me get by in day to day life. Stock responses to questions; routines for doing particular tasks; time for self-care and self-regulating; almost like an internal cognitive and sensory map of how everything should be. This helps me make sense of my world and function quite well. Without my “map” I would be stuck. Unfortunately, there is another way I can become unstuck, and that is when someone changes everything around. Suddenly my “map” is of the old normal and not the new one.

My brain and body want to operate in  the familiar – that is what they are programmed for, but the familiar has gone. Have you ever driven somewhere unfamiliar and relied on a Sat Nav? You experience a diversion due to roadworks or an accident, and suddenly you have to digress from your route and you realise that actually, you have no idea of where you are and how to get back on to your route and continue towards your destination. The Sat Nav keeps ordering you to do a U turn when possible and wants to keep sending you back to that closed bit of road you can’t go down. You can’t re-programme your Sat Nav because you are driving and you have to keep going forwards, not knowing  if you are getting nearer to, or further from your destination and as it is all so unfamiliar, there’s no way of finding out.

That sense of being lost happens to me frequently. If I didn’t programme my social “Sat Nav” that tells me how to interact with people appropriately I’d be constantly lost. If I didn’t “map” how places should look, smell and sound I’d have no idea if I was in the right place, doing the  right thing.

Looking for her ball

Other animals use “maps” too. My dog’s map is very definitely based on smells. She  recognises when other dogs have been on “her” favourite walk, and she often indicates to me where a fox may have crossed the track and is very helpful in identifying potential sites for my trail camera.

Migrating birds are able to sense the earth’s magnetic field and that’s how they can return directly to the same summer and  winter destinations every year without fail. Humans in fact have the same physiological adaptations as these birds, and I wonder whether that’s why some of us have a better sense of direction than others – perhaps the sense of magnetoreception that is found in some other animals is present in humans too?

All humans use our senses to help us know where we are in the world. But senses don’t work in isolation – they are closely linked to our memories and emotions.  Perhaps your child cried their eyes out when you washed their favourite cuddly toy because it didn’t smell right anymore. Maybe the taste, smell and texture of rice pudding takes you straight back to your school days and the dinner hall and all the associations you have with that.

Autistic people often have atypical sensory processing, which means we may need more or less sensory input than other people do. We can be hypersensitive and experience a normal television volume as deafeningly loud or we may be hyposensitive and not get dizzy from spinning round as fast as possible on a roundabout. This sensitivity varies from person to person, sense to sense, and moment to moment, and often becomes more extreme in times of stress, when adrenaline kicks in and starts triggering that fight, flight or freeze response we all get from time to time.

I expect places to smell, look and sound a particular way. I need them to, so that I know how to interact with them. When things change, I feel unsafe because the predictability and familiarity has gone. My map and rule book may as well be thrown away and I have nothing to replace them with. That is why I can become overwhelmed in certain situations – it’s not about disliking change, or needing routine because I am some type of control freak (and with a nod to any control freaks reading this – I personally can’t see why being a control freak is such a bad thing anyway!). I can only function by preplanning how to do things. Knowing what to expect is a great help with this. Whether that is planning a routine for my day, or having an agenda for a meeting in  advance, or rehearsing in my head how to handle a situation – it all helps me function and thrive. My sensory “map” helps too.

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Sense of sight.

I love that I spot the finer details that others miss – like the hairs on these newly unfurled beech leaves. I can proof-read written work quickly and accurately because mistakes jump out at me. Unfortunately, this also means I can’t ignore or tolerate things that are out of place. Someone else rearranging my things very slightly, does not annoy me because they look a little bit different. It annoys me because they look completely and utterly different and like a totally different thing that I have to learn about from scratch all over again! In these Covid 19 times – if you wear a face mask then you don’t look like you and I will probably not recognise you. I am the person who thought she had a new colleague at work and went through the painful small talk and introductions process a second time with someone I had already done it with – they had just had a new haircut that’s all!!!

Smell.

This is the sense I am currently struggling with. It is a sense that connects straight to our emotions. People smell different at the moment and this is unsettling. They are leading different lifestyles (maybe they are working from home, have changed their diet, are exercising differently and have different stress and other hormones raging through their bodies). They smell more strongly to me because I’ve got used to avoiding them! This double whammy of ‘different’ and ‘stronger smelling’ makes going out feel very overwhelming. When people smoke, and wear perfume/aftershave then it all becomes too much to process and I feel myself switching off in order to cope or becoming so overwhelmed I can’t think or talk in words.

Hearing.

Although my house is rarely quiet – I have a teenage son who enjoys making a lot of noise at times. I can control the amount of noise coming in to my ears and brain, to some degree. I can wear my noise cancelling headphones and the noise in my house is fairly predictable – although the thunderstorm the other night made me almost jump out of bed! In town, the noise comes at me from all angles. Sudden alarms; shouting, laughing and talking; traffic noise and so on. The cacophony of noise is like a solid wall of sound that hits me full on and I can’t distinguish the bits I need to listen to.

My other senses are also affected by the “new normal” and its not a specifically autism related issue. Plenty of people are finding car journeys are making their children feel travel sick – normally they are fine, but they’ve got out of the habit of traveling in a moving vehicle. Many of us are enjoying the peace and quiet; we’re finding the reduction in social pressures has been a relief and a break from the high intensity lives we often lead.

Many of us will find the lifting of restrictions challenging and they will take some getting used to. All of us have different sensory preferences – regardless of our neurology. Some of us will find the fluorescent lights in shops way too bright and distressing when we start visiting towns again. Some of us will feel anxious when travelling because everyone seems to be driving so fast. On top of this are the social distancing rules – and the way they change, and some people disregard them.

I am taking this step by step. The sensory processing aspect is difficult for me – I’m dreading the day we are allowed to hug people again – what if someone wants to hug me and I flinch? What if they touch my bare skin, and they smell of perfume and I can feel their breath?!!! I don’t want it to be noisy and bright and smelly. I want it to be the same and predictable and familiar and I think I’ll stay in and just go on the internet and write, and message my friends from a safe distance! I can’t predict how this “new normal” will look and I’m out of practice with doing people things. When I do interact with people I remember why I find it tough – they overstimulate my senses, and confuse my brain with their inconsistent rules, they have hidden agendas that I don’t intuitively understand and I am reminded at how I’m just not very good at being a normal person! After spending time away from my own little world at work or visiting a shop, I am exhausted.

Hope…

But I will continue with the self-care and show myself the same compassion I have used towards myself throughout lockdown. I am not alone in feeling anxious and overwhelmed about this. I am relieved the restrictions are being lifted little by little. I can get used to the “new normal” little by little too.

The kindness and positivity seen in society at the start of lockdown has appeared to shift into anger and disregard for others. I hope it is just because people are fed up. Maybe everyone is scared by the changes? As lockdown eases, I am glad that I have coped and got this far. The world is going through unprecedented times and who knows what will happen next. I have learned so much about myself and how resilient I am and what I need to do to take best care of myself and family.

The bits of lockdown that I have most enjoyed, I will continue to do. My Saturday morning baking, my walks in the woods, the friends I message and spend time online with. I will continue to write the blog that I started in lockdown, and I will continue with being kind to myself and others.

Maple, pecan and apple Bakewell – my invention this morning!

Autism, coronavirus, self-care and coping well

“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:

  • Get up
  • Breakfast
  • Watch a cartoon
  • Play video games
  • Lunch
  • Go outside for the afternoon
  • Dinner
  • Watch YouTube videos
  • Watch a comedy programme or a car programme
  • Bedtime
  • Bedtime story with dad
  • Sleep

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.