Autistic Self-Isolation

For the last week we have been instructed to self-isolate, not to go anywhere unless it is essential. From what I can gather this has proved very difficult for many people, with great increases in general anxiety, sleep problems, lack of focus and other associated problems. However not for me. Perhaps it is because I am autistic or having worked on cruise ships, maybe I am just used to it.

I spent twelve years at sea, with people who thought that crocs counted as formal wear, answered ‘hello’ with ‘no thank-you’ or would yell the word ‘bathroom’ at you from down the hall. Having so many people from so many places in a confined space, meant it was hardly surprizing that we would be on regular ‘lockdown’ due to an outbreak of flu or norovirus. I would say that about two weeks every three months was an average. For this time, we would only be allowed out of the cabins to work (if essential) and to eat. Social events would be cancelled, guest interaction minimised, non-essential things closed and everywhere would be disinfected twice a day. One of the more tedious jobs was wiping the laminated covers of the library books, what the point of this was (when we couldn’t wipe the pages) is anyone’s guess.

This is all fairly similar to what is happening now. The major difference is the sheer number of people involved. It feels like we are over the panic-buying stage. The supermarket was over-flowing with toilet roll yesterday, they had an entire aisle of it plus two huge pallets. I wonder if anyone has risk assessed the flammability of all that.

For me, self-isolation is not such a bad thing. Like many autistic people, I don’t mind structure and following rules (assuming I understand what they are). Two of my least favourite things are crowds and sudden noises, with everyone being inside, these are no longer a problem. I take my daily walk through deserted streets and it is just lovely. People actively avoid entering my personal space and nobody is tempted to pat my shoulder or shake my hand, it would be great if that continued long after this is all over.

One problem I do have is that Covid-19 is a bad choice for an ‘intense interest’. I like things I can research, learn and find answers to. Yet, as this is new, nobody really knows. Some experts are saying it is getting better, some say it is getting worse. The police say different things to different people and the politicians say ‘wash your hands’ and ‘stay two meters apart’, yet every day another one is infected. This is no good for an intense interest.

Instead I am trying to find news about something else, anything else. There was a story on the news the other day about two people who reached 116, two weeks ago I wouldn’t have paid any attention to this, now it seems the best thing in the world.

I was reading all about Angela Merkel who has tested negative three times but has decided to still carry self-isolating for a few more days. I can relate to that…

My Week

Today I am sitting on a train doing a cross country journey, the day after the government said the police now have the power to fine people for doing exactly this.

This has been the odd end to an equally odd week. This time last week, the Prime Minister announced that bars and restaurants have to close. To be completely honest, this was great news. I hate working evenings and finishing at 5pm sounded perfect, no bingo for a few weeks is brilliant. Nobody needs to hear about little ducks, Heinz varieties or what is top of the shop.

I think I always knew. There was very little point in making a new schedule for the following week; but I did one anyway, trying to plan a series of events that don’t involve groups or anything to touch is not easy. Essentially, I had to find a load of things that were outside (away from confined spaces) and nobody would actually want to do. I put on a six mile hike to a national trust property, that the national trust closed an hour after we went to print. I put on a visit to a farm, which the farmer cancelled the following day and I put on a visit to the lifeboat station and guess what I got an email saying that wasn’t possible either. Oh well, as it happened most of our guests had cancelled anyway.

Though not the Johnsons, the Johnsons have been with us several times and not only didn’t want to go, they actually extended their stay. ‘Now the kids are off school, prices are way cheaper than normal school holidays’. They also come to everything, no matter how rubbish it is. Their kids were in my activities room playing games while the Dad sat on his phone and it was then I noticed a press release on the company’s corporate website telling the guests that we were closing on Friday. This was news to me and also everyone else on duty. We were closing for seven weeks (much longer than we were expecting). It is a lovely way to find out I am unemployed.

The next day, I got an email telling me that not only am I out of work, I need to move out by Friday. Evicting people who have nowhere to go seems to be legally dodgy under the emergency legislation but that is what happened. I was promised that an alternative found be found but no such luck. In the end I had to sort myself out, my colleague is staying in a tent.

The last morning followed a similar pattern, I went to return my keys (as requested) but the door was locked. After 15 mins of waiting outside with my cases and as my taxi arrived, the manager opened an upstairs window and yelled to just leave the keys on the step. This was my last interaction at the resort I have worked for and lived at for the last two years.

So here I am on the train, with all my possessions. There are only four of us onboard, although I have a ticket (for a bargain price of £107.50), there is no sign of a ticket inspector. Each of us is travelling alone with a suitcase. I wonder if they have all been evicted too, or if we are all about to get a fixed penalty notice and if we do, can I count that as a taxable deduction on my self-assessment form?

Other things that occur to me while trying to think of the positives, I won’t have to deliver hot cross buns, find somebody to dress as the Easter bunny or hide chocolate eggs for kids to find often weeks later. So not all bad news.

I heard someone saying would be a brilliant punchline if the Prime Minister stands up next week and shouts ‘April Fools’ to the whole country but that is unlikely now he is isolated with symptoms too. Perhaps he should have taken his own advice about singing happy birthday…

Are you open?

The phones have been ringing all day with this question… Another very frequently asked question is ‘do you think I should cancel my reservation’…

This is a tricky one, firstly it isn’t up to me or my colleagues, adults need to make adult decisions about their holiday plans. Part of my head thinks ‘we don’t need your germs here thanks’ while the other half thinks ‘well, we need some customers to still get paid’.

The bar and the pool have already closed following government advice but looking round the town today, it was like a carnival was happening. The queue outside the chip shop resembled that of a new Harry Potter release.

Here is a list of things I have heard people say in the last few days

  • What is the difference between isolating here or at home?
  • If I stay at home, I will let the virus win
  • Well, there are worse places die than here
  • My kids will have to go to school as I am the only person in the shop who can prepare dressed crab

This morning I saw a man leave a used tissue on the reception desk, this afternoon a family of five (parents, two kids and grandma) checked in for a month ‘they can do their school work anywhere now it is online’.

The government said ‘don’t go to the pubs’, people went to the pub, they closed the pubs.

The government said ‘don’t go to the parks’, people went to parks, they closed the parks.

Let’s see what happens next… I do like having my evenings off but I am self-employed and I also like getting paid…

My Corona Diary

There is a lot to say about corona & me a week into this crisis. Last week I wasn’t too bothered ‘just a bit of a cough’ and spent more time wondering how long it would take Marilyn Monroe would take to wash her hands if she had to sing happy birthday twice. Things seem to have changed…

Firstly I work at a holiday resort, my job involves getting people into social situations and working in pubs. Not only that, I also live at the resort. If the resort is closed (either by management or the government) I would not only be unemployed but homeless too.

Next the slightly tricky situation of where I heard this news. I had been dragged by my employer across the country on four trains and the London underground for what could be argued to be ‘unnecessary travel’ for a ‘social situation’ held in a bar. To be honest, the work really could have done this online. I feel I have broken almost every government advisory notice in one go. I just need an avoidable visit to a nursing home and I would have completed the set.

The journey itself was fine, the trains were quiet and although there is still no hand sanitiser anywhere, I didn’t hear anyone coughing. It seems there is a much wider variety of face masks than I was previously aware of. I always thought they were fairly standard but it seems the come in a variety of colours and sizes. One man had written ‘Trump sucks’ on his in marker pen.

I read somewhere that Shakespeare wrote King Lear while being isolated to avoid the plague, I guess that is something to aim for…

Sensory Differences

A classic autistic characteristic is that of sensory difference “Many people on the autism spectrum have difficulty processing everyday sensory information. Any of the senses may be over- or under-sensitive, or both, at different times. These sensory differences can affect behaviour, and can have a profound effect on a person’s life” so says the National Autistic Society.

A major part of this is ‘too much information’. Too many things, happening too quickly. Personally I find discount retailers who arrange stock by size rather than by design very difficult. Everything is on top of everything else, there is no space to look at things and the queues are inevitably very long. The shops are noisy, chaotic and I would rather pay more so I don’t need to go through it.

Another one for me is hairdressers. I hate that it is so hard to book in advance. I don’t want to have to go into a busy place and have to wait for an unknown amount of time. I often walk past multiple times until I find one that looks quiet.

Then there is all the distractions. I find it extremely hard to focus if there is a repetitive sound (birds, traffic, builders), if it is dark or if it is cold. I find a conversation happening across a room often is a barrier from the conversation I am in. I find it hard to sleep in the summer as I still need layers of bedding so I don’t feel my own breath on my body.

Another thing people comment on is the physical flinch I do when I am touched by surprize. I would rather not shake hands but at least I get warning when I see a hand approach. I physically jolt when anyone touches my shoulder/back, then they feel embarrassed and I have no words to explain.

I always need to know how long something will take before I start it. How long is the chapter of the book? How long is the film? How long will the journey take? There is something lovely about reaching the end but I can’t do that if I don’t know when the end is. I check my watch every few minutes in the cinema, not because I am bored but because I want a progress report.

Essentially I need to be in a situation that I feel in control of or feel I can understand. This is why I don’t do parties. It is nothing personal, I would just rather be in my own space. To quote the Greatest Showman ‘this is me’

Worse Things Happen At Sea

Having a group of strangers in an enclosed cruise ship at sea with no sight of land for 4, 5 or more days can lead to a never-ending combination of unforeseen circumstances. What mood are the people in? What is the weather like? Are the seas calm? What condition is the cruise ship in?

               A clue of reading how well a cruise is going to go is the first formal night, if most people dress up the cruise will be fine, if most people don’t dress up the cruise will also be fine. However, if there is a mixture, we are likely to be in for trouble.

               The dreaded announcements always began ‘ladies and gentlemen, this is your captain speaking’. Most non-essential announcements would be made by somebody else, so if it is the captain you know there is trouble brewing. What happened next would usually be decided on how easily understood the captain was. If he (or she) spoke clearly using words people understood we would be fine but if they mumbled, were overly technical or had dodgy English the phones would be ringing for hours. The complaints would come before the announcement had even finished.

               ‘what is he saying’

               ‘I don’t know, I can’t hear it either as you are yelling at me’

               It could be bad weather is coming, it could be a technical problem with the ship, it could be a problem in a port meaning we can’t go, it could be an outbreak of illness. Either way, we escaped quickly as there is nothing that can be done and we all know how ugly it gets.

               In my time at sea, we sailed through force 12 storms, had a fire, ‘lost’ people overboard, got detained by various local authorities, had people arrested, several deaths, any number of power failures but even after all that the idea of the entire ship being quarantined in Japan (one of the strictest countries cruise ships go to) is something of unimaginable horror.

               There is no doubt, the guests will be well looked after. Yes, they are stuck inside but sitting on a balcony for two weeks in beautiful weather while people are paid to bring you food and drink three times a day is hardly the ‘prison’ the news are making it out to be. What nobody seems to be focussing on is how terrible this must be for the people who work onboard and are also quarantined. Nobody is coming to relieve them; the workload is the same, the social rooms will be closed, every conversation will be full of questions nobody knows the answers to and there is no hope of shore leave.

               So, lets think not only of the people ‘imprisoned’ in five star luxury but the people working 14 hours a day (for no extra money) keeping them in this luxury. The crew of the Diamond Princess are nothing short of amazing.

Isolation

I am 37-years old. I work for myself and I live alone. I can’t imagine a scenario when I would choose to change this. I understand myself and my needs, I know my own ways and find the rest of the world difficult. I really don’t understand why anyone would be interested in me, as I am not really interested in anyone else. Don’t get me wrong, I don’t hate others, I just don’t get them. Other people are erratic, confusing and contradictory.

For me, the easiest communication is written. Anything else is pressurised and time restricted. I can’t follow facial expressions, vagueness, abstract concepts or tones of voice. I seem to upset other people, I don’t mean to, I just don’t get what they mean, I don’t understand why can’t people just be clear as to their meaning?

I choose to be alone because it is more straightforward that way. I can get overloaded easily, people call me insensitive, I find the emotions of other people very hard and would rather not be involved in them.

On the TV dramas, people like me are called loners. Sometimes ‘dangerous loners’. We are the people the neighbours are suspicious of, the people who are arrested in TV dramas, but we are not scary, just different and often scared ourselves. The world is confusing and unpredictable.

The word seems to come with a stigma. If I tell people what I am, perhaps I would be considered high-risk, I fear the people with the clip boards will do ‘an assessment’ and replace me ‘for operational reasons’ with somebody ‘neuro-normative’. The normal people are more acceptable to the insurance company. Then what would happen to me? Not disabled enough for benefits, not abled enough to work. Isolation is the best choice, stay out the way, off the radar, out of sight, out of mind and nobody’s responsibility.

I got a mobile phone twelve years ago, it still only ever had 7 contacts, 6 of them I haven’t called in years (one of them I can’t even remember), the other is my boss and who I try to avoid calling for anything at all.

A recent survey I found on the internet said that changes, social situations and unexpected changes all lead to ‘too much information’. It also said that 79% of people like me are isolated.  For me (any many other like me) this is a conscious choice, a way of living. I wouldn’t want to change this; I like how things are on my own, steady, consistent and predictable. For some people, isolation is an accident, a terrible circumstance, a negative. However not for me.

I am isolated, I am autistic, I am fine.

Test at the till

               When did paying for things in a high street shop become so complicated? I am sure that it used to be the case, the cashier told the customer how much they owed, the customer paid and then the transaction was over. This is no longer the case.

Take Subway as an example. The questions keep on coming until my brain melts. I have no idea what bread, what sauces or what salad I want with my sandwich and without testing them all I will never know. Then when I ask for a recommendation, the so-called ‘sandwich artist’ has no idea.

This week I popped into the chemist on the high street. The reason for this was mainly because it had started raining and thought it would be a nice waste of time. I picked up a small box of plasters and took them to the checkout. I had the correct change and was ready to go… Then came the exam.

               ‘Do you need a 5p bag’ – That is an easy one. ‘No its small enough to fit in my pocket’

               ‘Do you have a loyalty card’ ‘No’

               ‘Do you want to take out a loyalty card’ ‘No’ I am starting to remember why I hate high street shopping.

               ‘Would you like to see our special offers?’ The assistant is still holding the plasters hostage in her hand, a queue is starting to build and I am starting to get edgy. ‘No thank-you, just want the plasters’

               ‘Can I give you a copy of our Christmas brochure?’ No, Why do they even have a brochure? I should have just kept walking in the rain.

               ‘Would you like to leave your email address so I can send you a copy of the receipt?’ AAHHH why is this so hard?

I make a mental note never to go to Superdrug again. I swear University Challenge in another language with the sound off would be easier than this.

Next time I will just use Amazon.

I am autistic

The Autism Act (2009), Equality Act (2010) & Care Act (2014) have made life much easier for autistic people. Now local authorities, employers, government agencies and service providers are obliged to train their staff and cater for autistic adults.

I know this, and I know it would make my life much easier to let people know but this seems such a huge thing to do. What if a huge commotion is caused? I don’t need lots of meetings or assessments or people whispering behind closed doors. I also have no interest in filling quotas for ‘disadvantaged groups’.

One of the biggest things I have trouble asking for is for ‘reasonable adjustments’ to be made (despite the fact they legally have to be made). I can’t be bothered explaining to people who don’t understand, what counts as a reasonable adjustment and the idea of being at the centre of a drama is terrifying.

Yet due to the levels of greater awareness and the increasing legislation, I am starting to find that people know.

The first time I told a stranger I was autistic was the optician. I find medical stuff very hard, in fact the previous time I went for an eye test, I got so stressed I feinted. Yet as soon as I said I was autistic, the whole demeanour of the optician changed and the appointment went fine.

A couple of months later, I messed up my tax return. Having such a long and complicated form to fill in, is so tough and this year I got it completely wrong. I was so worried about phoning Inland Revenue, I didn’t sleep for three days. I even practised phoning the number the day before. Yet when I said I was autistic, the tax inspector sorted it within seconds (and found additional savings, I wasn’t even aware of).

More recently, I have told people on two other occasions – once at the GP surgery, once at the council office. Both times the clouds lifted. In fact, I got very stressed at the council office and the official stepped away and let me gather before carrying on.

Part of my late autism diagnosis is not just learning how is affects me but how it affects how people deal with me. If I can carry on being strong and telling people I come into contact with, my life will be simpler. But this is still so scary…

Icelandic Rollercoaster

This week, I decided to treat myself to a little ‘something for the weekend’. It has been a long, cold week and I felt like I deserved a bottle from my local high street frozen food emporium

Then something happened to me which has not happened in over a decade. The checkout operator needed the supervisor’s approval to sell it to me. I was overcome with emotion. Firstly, I am nearly 40, yet this man thinks I might be 18. The sea air must be working, how brilliant. Then panic, do I have any ID with me? I start tearing through my bag in anticipation while the queue builds up and we all await the arrival of the supervisor.

A lady arrives dressed in a Christmas tree jumper and reindeer antlers. However it seemed her mood did not match.

‘Hello, you look ready for Christmas’ I say. To which she replies ‘yeah, he’ll do’ and walks off again.

Despite the fact, I clearly didn’t have any ID, I was a little crushed. She could have played along a little better. To add insult to injury, the man behind the till proceeded to take his glasses off, rub them on his jumper and look at me again.

I quickly paid up and decided to go to the Co-Op next time.