Oh What A Circus

In my ongoing discovery of what it means to be autistic, I have often come across the idea that autistic people take things literally. I have always thought this is one that didn’t apply to me. After all, I enjoy a bit of sarcasm… However, this week I saw a circus big top arriving in town and it reminded me of a time where my ‘taking things literally’ caused a major (if unusual) problem.

It must have been about 2004 and at the time I was working for the radio station, it was a really exciting time in my life and my work meant there was always something crazy going on. We were the only radio station in the area and so anything that happened on ‘our patch’ always involved us, meaning we got a lot of free stuff.

Because I had no money, I accepted every offer going no matter how rubbish the thing was. I have blogged before about how I opened a branch of Subway, went backstage at music events I knew I would hate and got some free cholesterol testing kits. None of this mattered, it was free and exciting. So when the circus came to town, complimentary tickets came my way and I shared them with the team.

For the purposes of this, I am going to change the name of my boss to Paul as he is still working on the radio and doesn’t need people like me bringing up idiotic stories from years ago. So, Paul was my boss at the time and became a good friend. He is a very generous man and I would often go into work very early and help out on his program, answering the phones and researching items. I wasn’t paid for this but it didn’t matter, I loved it and Paul’s team were great company.

In the days running up to this, Paul said he was going to be the ringmaster and open the circus from the back of an elephant. In retrospect, this was clearly a joke. He is a radio DJ and not a member of a travelling circus. However, my autistic brain didn’t register this and that evening I announced on my program that Paul would be riding an elephant at the circus. I just took it as true and made a feature of it “have you ever ridden an elephant?”, “if you were in a circus, what would your act be” and so on. The phones were busy. Several people rang to find out what performance Paul would be at and I told them it was opening night. As was standard when we did an event, I also contacted the local newspaper who agreed to send a photographer.

It seems like Paul must have been listening (or perhaps, people contacted him directly about it). Either way, all our friends rushed to get tickets for opening night which must have given poor Paul a problem. He was now committed to riding an elephant at the circus. A commitment the people running the circus were completely unaware of.

 Either way, he worked his magic and made it happen. My memory of that night is that he was dressed in a white suit (think John Travolta in Saturday Night Fever) on the top of an elephant and looked completely terrified, his vertigo may have kicked in. I, however, was fairly distracted by being backstage at a travelling circus with complimentary popcorn which I promptly spilled and went on to be eaten by a Shetland pony (the popcorn, not me).

I have been trying to find the photos from the newspaper report but with no success. I think the moral of the story must be, don’t make things up and try to show off to autistic people. We might just announce it on the radio.

Free For Three

Last week saw the third anniversary of my ‘medical discharge’ from my 12 year sea going career and the start of my adjustment to life as a land lover. I feel like I have changed a lot over the course of the last three years as I have tried to learn more about myself and how my brain works.

The first part of this was figuring out I was autistic, before going on to be formally diagnosed which I have written about in previous posts, though the debate regarding which of my behaviours I can blame on being autistic and which are down to my frequent bad decisions continues.

Since then, it has occurred to me that having strategies to cope with stress would be helpful to lessen potential meltdown situations, sleep better and just be a better person. This time last year I got a telephone assessment with talking therapies, it took me weeks to pluck up the courage and I was surprised by how quickly they got back to me with an appointment once I finally asked (only a few days). However, in those few days, lockdown was announced, I lost my job and as a result had to move house. Basically, I was too stressed to complete the stress prevention course.

Over the last year I (like everyone else) have had a lot of spare time, so I have undertaken a lot of free online courses (sometimes three a week), these have included:

  • Big Data and the Environment
  • An Introduction to Children’s Visual Culture
  • How To Read a Novel
  • The Tudors
  • Fashion In A Changing World
  • Content Management

Looking back over the eclectic list of completed courses on my account, I am struck by how I have forgotten most of them. One I recently signed up to was Mindfulness. This is a term I have never previously understood but I learned from the course it is a series of techniques to better connect to our surroundings. After week one, I discovered it is a lot of sitting quietly and breathing. While I am sure it is great for many people, I realised I am quite happy not knowing what is going on around me. It seems like the more aware of my surroundings I am, the more there is to be stressed about so perhaps that for me, ignorance is bliss.

What has been more useful has been learning about CBT (cognitive behavioural therapy). This is a way of becoming aware of negative thoughts so they can be dealt with. It doesn’t stop the thoughts from appearing, but it stops them becoming overwhelming. An example would be somebody with arachnophobia. Doing CBT would not stop them hating spiders but would let them get on with their day rather than quivering in a corner.

For me, I want to use it to sleep better. I have spent many midnight hours getting annoyed about minor incidents that happened twenty or thirty years ago. CBT is showing me that I need to recognise that it is not useful to keep going over all these things everyone else has forgotten. So when something pops into my mind at 3am, I must find something else to focus on so the destructive thoughts don’t ruin my whole night.

Of course, it is taking quite a lot of practice but I feel it is starting to work, I am sleeping better and it is now rare for me to have a terrible night of sleep. Although is that because of the CBT or is that because my life is currently relatively stress free? Also, it is true to say that I might be doing it completely wrong. After all, I haven’t formally done any CBT, I just read about it on the internet…

Let’s see how that goes…

To Tree or Not To Tree?

This year, it feels like there has been less arguing about when is the right time to do festive things. Perhaps it is because we all need cheering up or because we have run out of anything else to do but the decorations are everywhere. I was surprised to learn that a Christmas tree farm near me had sold more than 50% of its stock by mid-November meaning that a lot of people will have dead trees by the time their bubbles come to visit.

I like the run up to Christmas. I will happily listen to festive songs all year round (although there are only about ten good ones), the lights cut through the long dark days and I also have a thing for the seasonal sandwiches they sell in supermarkets. However, by about 18th December as normal routines are getting more disrupted, I have usually had enough and am ready for things to go back to normal. This year with the various restrictions, we are getting all the nice seasonal elements (music, films, food) but with far less of the stuff I hate (parties, family visits, the expectations of others).  Shame it took a pandemic to achieve it.

In recent years, I have had to battle to get out of going to parties and large events, which is odd as I organise them for a living. I find when I am running them, everything is under my terms so easy to control but other people’s occasions don’t interest me at all. I recently heard an interview with the autistic TV presenter Chris Packham on this subject. One of the things he mentioned is that he told his partner ‘No I don’t want to go to that wedding because I don’t care about any of those people and never will, so don’t drag me there, you go’. That really sums it up for me too.

This looks awful…

Being diagnosed late, I feel I lack a lot of autism education that others have. I wonder what of my character traits can be put down to being autistic and what is just me behaving badly. What can I change and what do I need to live with?

Earlier in the interview Chris Packham also said ‘one of the problems is, that when a lot of people talk, it’s obvious what they are going to say before they say it and therefore I can’t be bothered to wait for them to say it so I will just interrupt them’. This rang true for me too, I realised that I do that too and this is something that I will start to work on.

By learning more about autism and about me, perhaps I could make Christmas become more bearable for myself and for other people in future years. Will it ever be ‘The Most Wonderful Time of the Year’? That seems unlikely.

Four Out Of Ten

               This has been a very eventful week, for the wider world and for me personally. This time last week, the Prime Minister of UK made a TV broadcast (two and a half hours late) announcing that the country will go back into lockdown.

Having five day’s notice meant that the entire country went panic buying with massive queues down the high streets. My local radio station were live from the indoor market (even though it was closed) and tried to find passers by to interview. One woman admitted buying two table lamps as the shop wouldn’t be open next week, before going onto say she had no idea what she was going to do with them. This was possibly not what the government had in mind. While the Prime Minister was making his announcements, the family across the road from me set off fireworks, presumably very excited at the idea of another month at home.

               This week, to mark bonfire night, a study was released saying four out of ten employers would ‘think twice’ about employing somebody neurodivergent. This would include people with ADHD, PTSD, anxiety, depression and autism. Fireworks can be tough for many in these groups, the unexpected bangs can be hard to deal with for many people and plenty of pets too. This year, as there are fewer organised displays, fireworks seem to have been going off about once a minute for the entire week.

Will this ever be considered anti-social?

Also going on the entire week has been the US election. At the time of writing the vote was four days ago and still there is no winner (making the PM’s 150 min delay look amateur). I have been oddly engrossed in this process, looking at the latest results and listening to the coverage for days now, even though I know nothing is happening. At least I am doing better than a man I heard being interviewed saying he hasn’t slept since Tuesday, he has been following the coverage on his iPad which he takes to the toilet with him. Apparently, he can’t bear the idea of missing the ‘big moment’. I hope we get to find out what he does when it is actually declared, probably just fall asleep.

               So with being awake most of the night listening to news about the electoral news of some far away county in a state I would need a map to locate meant I was not in the best condition for my job interview. This was the day before lockdown began and I spent the morning revising the company website, job specifications and my own CV. This was fortunate as when I was asked what I knew about the company, I could easily reel off a long list.

Selective Focus Photography of Person Signing on Paper
Writing anything by hand seems so unusual now.

               Now here comes the problem I never considered, the admin. Application forms, criminal records check, references and a health questionnaire which stated that a failure to declare any medical conditions could lead to dismissal. One of the questions was neurodivergence (which four out ten employers would ‘think twice’ about). This neurodivergence helped me remember all those facts that got me the job offer but should I take the risk?

               Mask wearing in an interview is a tricky thing. I found myself smiling at the interviewers a lot and making facial expressions before realising nobody would see them. Something else that I have noticed, is that mask wearing means I won’t need to shave as often as nobody will see. This is great news and something I didn’t pick up from the mask vs no mask debate. It wasn’t until I left the building, I noticed that my mask had been on back-to-front (being competent is not easy). Despite this I start next week. Whether we will know the results of the election by then, remains unclear.

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Of course, I wrote this blog earlier then went for a walk before posting it. By the time I got back, the world found out the results. If all it took was me writing this, I would have done it days ago. I just hope that the tired man’s iPad had not run out of battery.

Sunday, April 1st, 2001

In the morning: slept in late, read through the newspapers

In the afternoon: Went to the Trafford Centre for a book but could not find the one I wanted.

In the evening: went on the internet too. Did quite a bit of college reading. Watching television for a while.

Best thing this week was finishing coursework

Next week break up for the Easter holiday, will restart my swimming and do some revision, I am looking forward to a long break.

Morning 5, afternoon 6, evening 5

The next few days will be very quiet, only one week until Easter

Tomorrow: a long double free and tutorial

Weather: sunny and warm, temp 14. Summary: a fairly forgettable end to a stressful week. Total 5, Week 6.

I was 18 at this point and coming up to my A-Levels. I enjoyed college, it was a huge place with lots of small buildings scattered over a large estate. One of my strongest memories of the time was trying to get to the canteen at the exact point the hot cookies came out of the oven and they would still be warm in the middle. They were 30p each and I can still remember the amazing smell.

Double free was the greatest thing about college. Two hours where we could do anything. The idea was that we would sit in the library but instead I would go and help at the shop mobility centre. They would lend electric scooters to people who found walking hard so they could get their shopping. I am not sure how this voluntary work started but I am very sure it ended when, in an absent minded moment, I pushed a panic button and the police came rushing in.

Reading back through this, I am amused by the idea of me having ‘read through the newspapers’. I do not believe this statement could have true. There is no way, I would have had a pile of Sunday papers and certainly not have had the patience to read them through. So why did I write this? Was I expecting the diary to be found? If so, why am I trying to impress this hypothetical person?

I have skipped over the Trafford Centre mention but that must have been a major part of my day. The Trafford Centre is a huge shopping mall on the outskirts of Manchester. It took a train, a tram and then a bus to get there so going all that way (and being a Sunday, the service would have been less frequent), to look for an unspecified book and then not getting it might seem odd. I now see this as an example of my clear autistic behaviour.

The idea of measuring energy was explained to me as ‘spoons’ although others find this term infantilising and prefer ‘bandwidth’. Basically, it refers to a finite amount of energy. Sometimes a journey can take so much effort (loud noises, crowds, stress, sensory overload etc) that I can’t take anything else and just go home. I suspect this is what happened here. I have wasted whole days by going all the way to London getting off the train and then booking a ticket straight back again because my ‘spoons’ ran out.

I notice that I was still scoring my days out of ten and still giving everything either 5 or 6, something I had been doing in my diaries throughout my teenage years.

The stressful week refers to the handing in of my coursework. I really enjoyed coursework, doing a project under my own steam suits me nicely and is something I still really thrive on. Exams are much more difficult as the questions are unknown, making planning more challenging. Reading previous entries reveals the coursework topic was ‘skills and equalities’ and I can’t remember a thing about it.

This diary shows how little I have changed since I was 18, I still go to shopping centres without buying anything, I still haven’t restarted my swimming but at least I am ready to admit to not having ‘read through the papers’.

Best Foot Forward

I spend a lot of time listening to radio phone-in programs and these last few weeks have been a treat for lovers of unusual discussion points. I made a note of some of my favourite topics.

  • ‘Has your electric car ever run out of power on the M4?’ (Oddly specific question, what about people who lost power on the M6?)
  • ‘Would you stay friends with somebody who orders Filet o Fish at McDonalds?’ (general consensus was no)
  • ‘Does the wind play havoc with your toupee or miniskirt?’ (a rare chance for sufferers of toupee related trauma)
  • ‘Do you know what the word bonk means?’ (perhaps their work computers wouldn’t let them Google it)

Of course, there has also been plenty on the coronavirus. People are worried about their Christmas plans ‘there are eight in my family, who would have to pay the fine if we had dinner together? Could we share it’? Quite why people are already making Christmas plans in early October is a bit of a mystery to me.

It was a caller to one of these programs that made me think. ‘My husband is a surgeon and if he can wear a mask for eight hours in the operating theatre, you can wear one for twenty minutes’. I have got a mask in my bag but since I have a medical exemption, I have never actually used it.

Following an encounter with a shop worker who was horrified at my bare face and rising case numbers, I decided that rather than mess about with face coverings, if would be better not to go into shops at all and get everything online instead. This was fine until I became aware on my daily walk, that my right foot was getting very cold.

In retrospect, I had become aware that something weird was happening days ago but never thought to look. In fact, the entire sole of my right shoe had fallen off making me walk with a weird sway. This could have happened anywhere and the dry ground over the last week meant I never noticed.

So, how do I get shoes online? Isn’t this something I really should get from a shop so I can try them on? The admin of sending back shoes that don’t fit means I just wouldn’t bother and instead order more. I could end up with a whole pile of ill-fitting shoes. I thought again about the caller to the radio program, ‘My husband is a surgeon and if he can wear a mask for eight hours in the operating theatre, you can wear one for twenty minutes’.

I took a few deep breaths outside Sainsbury’s and gave it a try. I have resisted mask wearing because it is a change and change is scary but, of course, it was fine. A case of the idea being worse than the reality.

Fast forward a few days and I have completed a total reversal in my thought process. Mask wearing means I better blend into the crowd without fear of challenge, I am much more protected from the cold wind and no longer need to walk with broken shoes. However, my thoughts on the great Filet o Fish debate remain unresolved.

No change please, I’m autistic

Like many autistic adults, I like living alone and having my own space is important to me. I don’t need other people being there making noise and mess. I don’t throw dinner parties and I am very happy with this situation. The problem is that I also cannot do DIY. The idea of doing even the simplest task myself is cripplingly stressful particularly if it involves any equipment. So, when things brake (or I can’t understand how to work them) I find ways to work around them. It is just easier.

  • My new microwave didn’t come with an instruction manual and the one I found on the internet didn’t match so I have not used it. That was two years ago so I heat everything on the hob.
  • The lights have a complicated fitting meaning I can’t work out how to get to the bulb. As a result, my flat is getting progressively darker. I now need a torch in the bathroom.
  • When my shower broke, rather than getting somebody to fix it. I started showering at the leisure centre instead for a few months until I finally called the landlord who quickly fixed it while I took deep breaths.
Flat Lay Photography of Hand Tools

The other day, we had a couple of cold nights so I tried turning on the radiator. Of course, I had forgotten that it stopped working ages ago. Feeling brave, I decided to try hitting the thermostat with a spanner. Amazingly it worked. Trouble is that now I can’t turn it off again and am back to sleeping on top of my duvet.

All this is part of a wider anti-change agenda that occurs in my mind. Anything that is likely to cause disruption should be avoided and this is where I now find myself. When the world changed in March, I lost my job and my flat with only three days notice. Should I have fought? Possibly, but I just didn’t have the energy.

               Now, six months later I have fallen into a nice routine. This is so important for me and for so many autistic people. I recently heard an interview with an autistic man who has eaten the same dinner every night for seven years even though he stopped enjoying a long time ago. When the supermarket stopped selling one of the ingredients it caused him real problems. I can relate to that.

               It occurs to me that I will need to go back to work soon but changing my routine is a real mountain for me to climb at this moment. I know that living like this forever is unsustainable and my savings will not last indefinitely, but I am settled. I go on a walk each day, I listen to the radio, I write, I am content.

“I never put off till tomorrow what I can possibly do – the day after.”

Oscar Wilde

Saturday 6th March 1993

I have been recently reunited with my childhood diaries. This is the first entry I wrote;

Swimming club, crawls 56

Metrolink to Manchester, went to the Arndale Centre.

Went bowling, I won 74-71. 3 point difference.

Mild and cloudy. 9 temp.

Summary: a tiring day but one I will always remember 10/10.

This was the final year I was at primary school, three years before the Arndale centre I mentioned got destroyed by an IRA bomb and it is so interesting to read it again 27 years later. The Metrolink is the tram service and because it goes along the streets rather than underground or on train tracks, I found it very exciting and if I am honest, I still do.

As a child, I was a keen swimmer and went to swim club at the council run leisure centre twice a week. I was hopeless and used to hop along the bottom of the pool thinking nobody would notice. Because of this, I was one of the last to get my 10-meter badge. I tried for years to make it onto the team, eventually I managed and was on the relay team at a gala against another local club. I was so slow that I wasn’t asked again and stopped going not long after. (crawls 56, meant I did 56 widths of front crawl. Yes, I counted).

Ten pin bowling seemed so innocent then, before the government deemed it to be an activity at high risk of spreading disease. My main memory of bowling was the anxiety of not getting my shoes back at the end. When I was young, I was convinced that my shoes would be lost, and I would be stuck with those weird red and white bowling shoes forever. I found out recently the reason for the shoe changing at the bowling alley is that they help the player slide down the lane. Quite why you would consider young children sliding around with heavy bowling balls to be a good thing, remains an unanswered question.

Assorted Bowling Ball Lot

Obviously, it is full of spelling mistakes and lack of space meant there is no real detail but looking back over this entry, it is interesting to see how full of numbers it is. I noted the temperature, the bowling score, how many widths I swam and even gave the day a rating out of ten. What I totally failed to mention is who else was involved (presumably I didn’t do all this alone, aged 10) but other people were not significant enough for me to notice. In hindsight, autistic traits are clearly already there.

So, was ten-year-old me correct? Was this a day I would always remember? No.

Would You Rather?

We all know the format of these questions. Two options are presented to pick between, both equally appealing or unappealing, which are meant to start conversation, so for example;

  • Would you rather have a magic flying carpet or your own personal robot?
  • Would you rather have one eye in the middle of your head or three noses?
  • Would you rather have a bucket stuck on your head or a block of cement stuck on your foot?
  • Would you rather be the best player on a losing team or the worst player on a winning team?
Face Mask on Blue Background

Well this week the government gave me a real life ‘would you rather’ conundrum in relation to the new face covering rules, here in England.

The guidance was released the afternoon before the rules came into force. Face coverings are needed in places people will be indoors for a few minutes (shops, banks, post offices) though not places where people will be indoors for a few hours (theatres, cinemas). It is all very confusing.

I have never liked things that obstruct my face. No matter how bright it is, I don’t wear sunglasses (luckily, it is usually to cloudy to be a concern). This also applies to baseball caps, fancy dress costumes, face paint and much else. A lot of this is because I am autistic and like many people on the autistic spectrum I struggle with change and new situations. To prepare for this, I ordered a mask online and then tried wearing it around the house, it didn’t go well.

The conundrum is that I have been given a ‘get out of jail free card’ from HM Government. Alongside people with panic disorders, cognitive impairments, people with breathing difficulties, issues affecting dexterity and many others, people with ‘other non-visible disabilities such as autism’… ‘are also exempt from wearing a face covering, regardless of the venue’. I have found my autism alert card from when I was diagnosed so I am good to go… or am I?

               On the other hand, just because I don’t have to wear one, does that mean I shouldn’t do so? The risk of spreading disease or catching it myself is not something I want to consider. Also, there is the bigger problem of having to explain it to the people I come across. I doubt many would argue if I tried to explain (its not the British way!) but with the guidance released so late, it is very possible many people won’t know about these exemptions.

               Processing information, talking to new people (particularly in a confrontation) and being overwhelmed by senses and information are all causes of shutdowns and meltdowns.

               So what do I do? What would I rather?

               I guess I will have to give it a try and see what happens. Time will tell.

PS

Magic flying carpet, one eye in the middle of your head, cement stuck on your foot & best player on a losing team – you?

Nice to see you, to see you ????

I have heard many people say, ‘I never forget a face’. Well I do. Frequently.

I can remember obscure facts, historical details and stuff nobody cares about, but people are a mystery. Unless I have met somebody several times and recently, they are erased from my mind.

Yesterday, a woman stopped me in the street, she knew exactly who I was and seemed really pleased to see me. However, I had no idea if she was a childhood friend, former colleague or maybe just somebody I gave a bingo prize to last month. I was hoping she would drop in some detail that would help me out but no luck. She must now think I am a terrible person. Perhaps I should have admitted I had no idea who she is. Thinking back on it, I can remember where I spoke to that woman, what she was wearing and even what the weather was like but her face has already gone.

This is the second time in the last couple of weeks this has happened to me. The first time was a man roughly my age, who not only knew my name but also that of my brother.

Doing research for this blog, I find this ‘facial blindness’ is quite common in the autistic community.

Two comments from the National Autistic Society forum

An example from recent history is one day last October when I asked the same couple three times within an hour what they had done that day without any memory I had already spoken to them. Turns out they went to see the seals.

I am also completely unprepared for somebody to speak to me out of the blue. I do not really understand why they would want to. This is also the case on the internet. My job means I am required to have an ‘online presence’. In reality, this only involves other people from the same company who are also required to have an ‘online presence’, we all like each other’s posts on Twitter or Instagram (about events we all already knew about) and the same photo goes round and round. I am not convinced any of us really know how to use social media properly and I have no problem with that.

A message from a stranger comes as a complete shock, particularly when it is somebody with whom I have no connection at all. Why would they want to?

This week, out of the blue, I received a comment on a photo from months ago (of a sunset) from a person so unlikely I had to look several times…

Paul Burrell (best known as the butler to Princess Diana)

Instagram comment

That one ‘like’ was from me. Goodness knows how he found that photo.

The internet is a crazy place.