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Superpower? Tragedy? Disability? ….Normal for me! And some tips on working from home

I have always been autistic and assumed everybody else on the planet processed, understood and experienced the world as I do. It was quite a shock to find out they don’t!

My sense of being intrinsically different to my peers has been there for as long as I can remember and this difference has been interpreted in many ways – weird, mentally ill, stupid, lazy, too intelligent for her own good! The list goes on and I hope you stay with me and read my future blogs where I’ll explore some of these themes in more detail.

Almost everyone I speak to is using words like “unusual” and “strange” to describe the current situation where coronavirus is a very real threat and is affecting our whole planet and how our daily lives function. There seems to be high levels of anxiety and fear, there are so many unknowns, and all predictability seems to have been lost from our routines.

Empathy is a topic for another blog, but I can categorically announce that ‘Yes, I empathise’. I am very definitely with the rest of the human race on this one. In fact, my normality is full of these type of anxieties every day.

I totally understand how scary it is to not know what is going to happen and when or how dangerous this dangerous thing is. I relate to the way people are seeking information and obsessing about facts and trying to work out the statistics of the Covid-19 situation in Italy and apply them to the UK. I appreciate how this has become all-consuming for so many people.

I am glad that many people are looking to make a better society and work together during the pandemic. I’m one of those people. I have some useful skills that may help. These skills can be interpreted in many ways too, just like my autism is.

I have always enjoyed having a swing!

I have worked from home for more than 10 years. I still attend a workplace for meetings, training that I am delivering or attending, or other purposes that require me to meet colleagues and clients face to face. I am very, very good at working from home and I see friends struggling at the moment in the light of the government advice to work from home.

We share similar challenges – they don’t like working from home because of the distractions. I don’t like working in an office for the same reasons!

Reasonable adjustments:

Environment

I find the noise of the office disrupting – people laughing in the corridor for instance. My senses are working at a hypersensitive level because of my autism and are even more heightened because of my stress. Every noise that disrupts my concentration sends me back to square one and I have to start my work again. I also find processing the smell of multiple perfumes and aftershaves, combined with cooking smells and everyone’s individual body smell is overloading. The lights are bright and my employers have given me my own space to work in with a lamp that I can adjust and we have strategically placed the notice boards so they don’t distract me. My proprioception is terrible at the best of times and the office is not as familiar as my house, so I bump into things even when I can see them. I have two bruises on my left arm – the first from where I completely elbowed a shelf off the office’s bathroom wall. The second from where I elbowed the same shelf off the same wall later on that same day after it had been fixed. My house is set up for my family’s sensory needs and I find it conducive to good concentration and productive output.

My employer is excellent and suggested I customise my workplace office space to be more like my home office. They even went as far as saying we could repaint it. I bring a cushion to work as I find sitting at a desk uncomfortable, I bring some scented inhaler tubes to help regulate myself when I need to (see photo) and to mask the smell of when my boss cooks chicken for his lunch. I also have my noise cancelling headphones (but rarely wear them because I feel so very self-consciously autistic in them). I get up and move about when I need to, we’re a diverse workforce anyway with a wide variety of personalities, skills and experience – this means inclusivity comes naturally. Colleagues understand me and appreciate me, and that is after all the biggest reasonable adjustment needed at work – the adjustment of attitude!

I would offer my employer’s advice to those of you working from home and finding it a challenge. See if you can make it more like your workplace. Unless you are a brain surgeon or a builder, then don’t – Your family will never forgive you.

Some of the sensory regulating items I use when I am in the office.

Routine and Structure

My job consists of tasks that are reactive to situations. These need to be done in a procedural way and meet certain standards and deadlines. This is easy enough to emulate at home or the office. My job also involves thinking about things, strategizing and planning and lots of writing. I don’t do this well sat at a desk for a solid few hours. Here’s a typical example of how I work when I need to create something:

  • Read all the information I need to process whilst sat comfortably
  • Walk around and think about it intensely for a few minutes maximum, maybe do some exercises and move my arms and stretch a bit (my hypothesis is it helps shake the information into my brain and sorts it out!)
  • Do a totally unrelated work task that is mundane, routine and very process led
  • Have a walk outside in the fresh air, done mindfully without getting involved in any mental planning
  • Do an unrelated mundane/routine work task
  • Sit down and concentrate fully on the creative piece of work and produce it in whatever time it takes
  • Have a walk outside (using mindfulness techniques)
  • Repeat the above

My working day is far more physically active than many people’s even though I do a ‘desk job’. When I am working from home, I do not sit at a desk at all. To an outsider, I look like I am faffing about doing nothing then all of a sudden intensively working. This was very misunderstood at school and I was told that I didn’t deserve my good grades because I made no effort or that I left things until the last minute. This is untrue. I particularly dislike the “leaving things until the last minute” quote as it is both slanderous and technically inaccurate. It is as ridiculous as when people lose things and say, “it’s always in the last place you look”. Of course it is, even I wouldn’t carry on looking in other places once I’d found something! Funnily enough, pointing  out these helpful snippets of information didn’t improve my relationship with school one bit.

My tip to those working from home is this: Give yourself the structure that you need. Whether that is having very set hours to work in, even putting on your work clothes if that helps, plotting out a daily schedule and producing a consistent amount of work in that time, or whether it is like me and mixing the day up, coming back to things, taking time to process information and taking time to intensely focus. As long as your job responsibilities are met in terms of workload, responsiveness to situations, availability and time, then how you do it may not have to include sitting down for several hours consistently producing output. I think children are similar and school classroom based lessons aren’t necessarily conducive to achieving your potential for many people.

I plan my day intricately. Not with a timetable, because that doesn’t work for me. The things I do take however long they need to take. But I always know what I need to do and ensure I cover all tasks. I prioritise by starting with deadlines that cannot be moved and plan how to meet them. I then do the reading and research I need to do so the information goes into my brain. I can leave it there  and get on with very task based activities in the meantime while my brain is processing the information. I take time to move, eat, drink, as required. These are all things that naturally regulate me at home and fit comfortably and naturally into my day. In the office I need to structure these regulating activities much more, so I may take two minutes to do a mindfulness exercise or walk to my car to fetch something so that I can stretch my legs. I may smell a scented oil to liven myself up or calm myself down or fiddle with something that feels comforting so that I can concentrate better.

This type of sensory regulation is common for autistic people. When I am in an environment that feels stressful, my senses are working overtime and I have to ensure I am very proactive in regulating them. When I am in an environment that is comfortable, it tends to have it’s own intrinsic regulating features and I don’t need to have as many breaks to regulate.

Although autistic people can experience hyper and hypo sensitivity in quite noticeable ways, everyone has senses and everyone’s senses are affected by stress. Think about what happens if you are scared. Your ears pick up more sound, your muscles get ready to fight or run away, you are hyperalert. I recommend finding time to pause and notice what your body and senses are doing and ensure you regulate them. Remember to eat, remember to drink and to move about.

Like I said, I’ve always loved having a swing!

Socialising

I find the social aspect of the workplace challenging. I love having a laugh with colleagues, I love putting the world to rights and debating how we do things and coming up with ideas. I have always been passionate about the industry I work in. I have good skills in managing teams, delivering training, talking with other professionals and contributing to meetings. These are all situations where there are very defined techniques and frameworks for working within and I can learn and apply the rules that make me a conscientious, fair and open-minded colleague.

What terrifies me though is the small talk. I don’t watch tv. I have had a lifetime of knowing that people find me annoying. I calculate and rehearse so much of what I say so that I get the tone right and don’t offend people. I have the sort of imagination that doesn’t create things from scratch, instead it latches onto something I can see or that I know and keeps hold of it like a dog with a bone and can make me appear creepy or like a secret stalker! I will remember the one bit of small talk that worked with the person e.g. an ex-colleague I worked with in 2007 mentioned once that she liked parrots and her parents kept them as pets. We hadn’t seen each other for 13 years and when I heard from her recently I asked about the parrots, just to be polite. It felt awkward, slightly nosy and I instantly wished I hadn’t asked as I felt I had been intrusive and plain weird and probably appeared to be far more interested in her life than I am.

Therefore, I can offer no advice on how to replicate this whilst home working sorry. I am delighted to be avoiding it and my stress levels have reduced at the thought of not  going into the office for a few weeks. I imagine  some colleagues will be feeling the opposite and will be missing the social contact.

My skills and dedication to ‘getting it right’ and not mucking up social contact have been learned the hard way. I will blog more about this one day. Talking with someone face to face is the toughest communication for me. Talking at them is fine i.e. giving instructions, active listening, training or presenting – all these are much easier than ‘having a chat’. It is the two-way bit that I struggle with and I often rely on clichés, learned techniques and observation. I don’t recommend observation as a good method. Randomly starting a conversation with “did you see that duck on the roof?” doesn’t work very well. To me it is far more interesting and relevant than “did you see Eastenders last night?” but we’re all different I suppose.

I am however, good at written communication. I can see patterns and themes in a piece of writing so I can identify tone and intent quite easily in something that is written down where I wouldn’t face to face. I have a tendency to ramble on in my personal written reflections but am quite skilled at writing concise work emails that demonstrate the appropriate tone. I have even written training materials about this. My tip for new home workers is this: You will be using email much more than usual. It is not the same as face to face contact. Be precise, take care with humour as you don’t know how it will be perceived, still do the small talk if that’s your thing and be polite. Remember that you do not know what the person at the receiving end is feeling or doing when they receive or read your email. Popping your head round the  office door to ask for something by saying “oh my goodness, I’m so busy, if I don’t get those figures now I’ll never finish on time” comes across completely differently to sending the same words in an email that a colleague reads whilst busy with their own workload and demands.

I started this blog with the intention of exploring the title in more depth. I’ll leave you to do that for yourself instead but I’ll come back to it I’m sure.

I read lots of information on how to help autistic people that is written by non-autistic people. There is rarely a role reversal of this because our society is biased towards neurotypicality. I have lived as me for decades and I’ve had to make it work. I have a successful career, a loving family, varied hobbies and interests. I have enough money to live the simple life I enjoy.

Like many autistic people, I struggle with seeing the bigger picture. Personally, I believe it is because I have to build it up from all the tiny bits rather than see it as a whole. I get there, but at a different speed and by a different route. Today walking across the fields with my dog at 7am, listening to the birds without the usual background noise of traffic, smelling the damp earth and feeling the rising sun on my body I was glad that I struggle to see the bigger picture and tend to focus on the finer detail. I was truly content. At that moment, nothing could make my life any better – nothing at all.

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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.