Seasonal greetings

It’s a strange time of the year this year. The U.K. and the entire world still in the grips of the pandemic. For many that’s going to create an odd and lonely Christmas.

I consider myself fortune in so far as I am living with my partner and therefore, whilst I miss seeing friends, I don’t actually feel that I ‘need’ anyone else. Working in the social care sector means that work and life have gone on as much as is possible; activities have changed, hygiene has taken on a level best described as paranoid and paramount.

My anxiety and stress has fluctuated a lot, which resulted in burn out and hence the reason I haven’t felt like writing much on here. Burning out leaves me expended of all non-vital energy and I need to make choices as to what requires my mental strength and the things which are less crucial at that point in time.

I remain optimistic for next year, races as planned, coaching sessions as well and my fitness is good for the off season. Motivation is currently good and I just need to avoid distractions in the form of a glass of wine instead of training. (ASD means that negative behaviour and compulsions are as likely as any other obsession, we are addictive personalities).

Anyway, I wish you all a happy Christmas and here’s hoping that 2021 will be a lot better.

Injury and frustrations

OK, now no one likes being injured. However, for the neuro-diverse, having changes to ones routine throw all sorts of issues into the mix. This coupled with lockdown (2.0) and the onset of winter all add to frustration.

Normally, I function reasonably well, within my routine, I go to work, my employers try to bunch my shifts into blocks, which has the downside of being exhausting, but the positive aspect is that, generally I get blocks of ‘rest days’ and days off; which allows me time to do the things I enjoy. I’m used to this routine and think little of the 5am alarm and spending 36 hours straight at work.

Injury, however, means that I am at home, which is nice but limited on what I can actually do for fun (or Mark 2 fun). I am endeavouring to use the turbo trainer, but this needs to work around my partner’s work schedule, which sadly eats into the time we normally would have together.

Turbo training, for those not in the know, involves a weighted or magnetic flywheel, adding resistance to a bike’s drive wheel to simulate an actual surface, thereby allowing you to ride whilst indoors and monitor metrics. My obsessive traits and competitive drive mean that I am obsessed with metrics.

So interruption to an autistic person’s routine cause massive frustration. In people with higher personal needs, this can lead to complete overload and thereby meltdowns. For me, I tend to go the other way, my frustration, combined with depression tends to lead to shutdown, where I simply retreat into myself and engage with others far less or not at all.

Turning to the injury itself, I’m now five weeks in, largely managing inside the flat without a sling and I have started doing gentle exercises, rotation and elevation are sore and I wake up in pain in the mornings. That said, it is better than it was and I have a further hospital appointment next week. Currently I intend to be back at work in another couple of weeks and look forward to returning to routine, whatever that may be.

In the meantime, I have picked up a couple of ambassadorships, Torq Energy and Sundried Clothing. Both of which I will discuss further in other posts.

Anyway, in these uncertain times, we all crave certainty and there is little of it. Even NTs are struggling with the unpredictability of how the world is changing under Covid and in global attempts to control the spread of the pandemic. So, let’s try and be nice towards each other.

Take care, stay well and remember to wash your damn hands and wear a face covering.

Masks

The National Autistic Society offer an exemption card for those who’s autism means that wearing a mask creates a sensory issue.

I wear one at work when dealing with personal care for clients and I took to wearing one before it was recommended by the U.K. government, mainly because I understand aerosol based germ transmission and have a rudimentary knowledge of biology. I see keepkng possible germs to myself as considering those I come into contact with, I haven’t been able to work from home and my job is very much based in the community.

Personally, wearing a mask allows me some unforeseen freedoms. I often mutter and ‘think allowed’ and plan much of my routine in this way. Doing so behind a mask allows this to be hidden and draws a lot less attention.

It also means that I don’t have to smile aimlessly at people. If I’m reallt happy, it shows eegardless of wearing a mask and on a day to day basis, it helps to camouflage when there’s nothing really wrong but I’m also not wandering around in a state of ecstatic bliss either.

A further benefit for myself is that the mask, whilst hot and sometimes inconvenient, the mask helps to reduce transport fumes, which make me want to claw my skin off.

Yes, it can be hot and uncomfortable, but we’re all in this together and from my own experience, and everyone on the spectrum is different, there are silver linings within the cloud.

In this uncertain time, we have no assurance that a cure will be fast, or efficient so why not try to make it fun.

Nothing verbal

Communication…

The Oxford English Dictionary provides the following definition :-

(1) The imparting or exchanging of information by speaking, writing, or using some other medium;

This includes social contact

(2) The means of sending or receiving information, such as telephone lines or computers.

Now, generally people assume that a person, with autism is ‘high functioning’ because they can communicate in what is considered to be a ‘neurotypical fashion’, i.e. we verbalise in a manner which is comprehensible to a world in which is predominantly neurotypical.

Is this always the case and the triad of impairments states that anyone on the autistic spectrum is likely to encounter difficulty in one of three areas (to a greater or lesser extent), these being communication, social interaction and repetitive and, or obsessive behaviour. *

Now, personally I spend a lot of time communicating with others. I have been in several professions which rely upon my ability to converse with others or to communicate in some other form. I spent years working in law and insurance, drafting correspondence and making representations in public. I also teach. I write a blog, I keep social media accounts and I’ve recently taken to presenting a current affairs show on local television.

So do I actually struggle with communication?

Historically, my fine motor skills were later to develop than my speech, some will say that I’ve not stopped talking since. Yes, I can talk, but not always effectively. I’m fine with imparting information but I don’t always notice when the recipient has got bored of my talking. It’s not always a two-way process for me.

Further to this. Whilst I am generally considered to be an extrovert, I’m not convinced that I am. I dread meeting new people, unless I know that I have something in common with them and that I can be introduced into the group. I also look and plan a mental escape route: for years I ran club nights and music events with great success and I enjoyed do so. I also spoke to a lot of people, as was necessary for the role to be successful. However, I provided invisible safe zones for myself, behind the DJ booth or outside smoking (I quit 5 years ago and the thing I miss most is that it gave me a chance to go and stand somewhere quiet for a few minutes, either alone or in singular company).

Basically, looking back on my life, I’ve always talked, a lot, but interaction with others is a learned behaviour. It’s not natural for me. I also suspect that this can be said of many of us on the spectrum; in order to survive, we have had to develop skills which are abnormal to us.

mute

Now, this brings me onto the issue of those who are non-verbal. This presents differing challenges. For someone who verbalises, it can be difficult when my verbal communication breaks down; which does happen. Under points of incredible stress, I can simply forget how to string a sentence together, or forget basic vocabulary. I don’t speak sign (although I did once learn traffic directions in BSL) or MAKATON so this makes life harder at these points. The only solution I currently have is to bluster it out. This may mean that I simply say the first things I can and that they may not actually make any sense.

I would be very much interested in hearing from others who have similar experiences and how they create coping strategies.

*Once again, I make the disclaimer that I am not a medical professional, nor a qualified expert on the subject of autism. I have completed some academic studies and I’ve lived as an expert on myself of my personality traits and restrictions for a lifetime and consider that I know how the condition personally affects me. Everyone one is different, although common traits exist or there would not have been enough evidence to diagnose anyone.

Airports…

I’ve just been reading through a twitter thread from It’s Not Shrodinger’s Autism in relation to her experience with travelling recently.

Until reading her post today, I was not aware of The Hidden Disabilities scheme. The scheme serves to recognise and promote the fact that, as the name suggests, not all disabilities are visible. Providing a free lanyard and allowing staff to recognise and offer additional support or patience with people who have difficulties. The scheme also operates through some supermarkets and other such places. As yet, it does not appear to be internationally recognised, but may be persuasive and the more people use it, the larger the scheme will gain recognition.

Having recently flown from Manchester airport to Geneva early on a Saturday morning, I can state that on this occasion, as someone who used to fly weekly from Manchester that I have never encountered crowds like it, in any airport anywhere. I used to fly a lot from Gatwick, Southampton, Geneva, Manchester and I’ve flown from some of the busiest terminals in the world.

We were only away for a period of three days so travelling could be simplified by use of only carry-on luggage (which we were offered to stow in the hold at no extra cost) an option which we took on the return flight. Security were excellent, despite stopping, taking swabs and ‘wanding’ me. I explained metalwork in my body and was processed with courtesy and professionalism.

However it was impossible to get a drink or something to eat without monolithic queues. Fast food outlets (I fail to recall due to the stress of the experience but I think that it was Burger King) had tills down and faulty self-service screens. In the end, my partner and I managed to settle on a bland sandwich and I had a glass of wine which was far more expensive than any glass I had whilst in Switzerland (the bar staff serving had the gall to tell me to “Smile, you’re on holiday” to be given the response that I that I paid for a bottle and got a glass and couldn’t wait to get a bargain at Swiss prices*)

Anyway, I digress. The lanyard scheme allows use of something called the Sunshine Room, which in Terminal One, Manchester Airport is located behind the fast food outlets. These areas are quiet zones, with reduced lighting and an escape from the pandemonium of the airport terminal. If only I had known about them. Personally, I do consider myself high-functioning, I currently live alone and generally manage to maintain myself and my small flat. However in the throng of crowds I struggle. I really could have used the solace of a quiet area for just a few minutes.

I won’t go into details of our holiday, at least at this point as it would be going off at a tangent which even I would be alarmed at.

We arrived back at Manchester Airport on Monday at around 23:30, having retrieved bags, gone through passport control and all of the usual rigmarole. Having spent suitable time in consideration of transport back to Bradford from the airport, the earliest (and quickest) and fastest option was National Express at about 03.20. A four hour wait in Manchester Airport Arrival lounge. Whereupon there was one shop open. Yes, one! It’s not like airports operate on a 24 hour basis is it! Oh, yes… An utter farce, absolutely nothing to do, for hours on end. The options for food and drink in the arrivals lounge is poor at best, but at least keep them open for pity’s sake. Here there wasn’t a quiet area. People lingering around plug sockets trying to power phones and generally one of the more miserable environments to spend time in.

In summary, I really must look into the Sunflower Lanyard Scheme as I felt that having a few minutes of quiet time would have made the experience more enjoyable.

—-

In contrast Geneva airport:

Welcoming, helpful. The nearest to a stressful experience was my partner showing me a watch which costs more than I would consider spending on a house, several watches, several mountain bikes and an Aston Martin. Thankfully, she was only looking and the staff joked that there was a defibrillator nearby.

*If you’ve not been to Switzerland, I can state, having lived there, that it is not known for bargains.

Overwhelmed

(This blog was drafted on Monday morning)

I seem to have been bogged down in application forms and interviews for the last two weeks. I was offered a job working as a support worker for students with autism, but despite me having applied for a role in Manchester, I was offered one almost a 100 miles away on a zero-hour contract. Needless to say, I have declined the offer.

If this blog seems a little erratic, that’s probably down to the fact that I couldn’t sleep last night so I’ve been online all night completing more applications and now I have the cat sleeping deeply on my lap and I’m not wanting to move her. So, espresso and lack of sleep can be my justification.

Interviews are always a challenge for most people. Now, I am aware that some people on the spectrum struggle with meeting new people; this is something that I trained myself out of many years ago. I worked in environments which require interaction with a constant influx of new people and we can learn to deal with an awful lot. I’m reasonably OK with new people, but my personal struggle comes in communicating on a deeper level; I can’t read people easily and when I do, I frequently reach the wrong conclusion. I have taken the attitude that, in interviews, I tend to tell people that I am on the spectrum and explain that I may just be more specific in conversation and that whilst it might appear that I’m making eye contact I won’t be and if my eyes wonder slightly it’s not me being rude. (I try to look at a person’s nose or eyebrows, which gives the impression of making eye contact.)

So in all, it has been a stressful few weeks and I’m still waiting on surgery to remove the pins from my ankle, which will allow me to get back on the bike and running again, both of which help me to feel ‘normal and healthy’. My surgical appointment is booked for the 23rd of September and hopefully recovery won’t take more than a few days.

Watching the mountain bike racing on Redbull TV reminds me how much I’m missing it and that I was supposed to be racing in Switzerland this coming weekend. As I’m not able to ride, let alone race, we have decided to simply take a couple of days to get away, enjoy being in the mountains and relax; I’ve not had a holiday since 2016 and then I ran a marathon up the Jungfrau (great fun but not particularly relaxing). So, cat sitting services have been found and myself and my girlfriend are very much looking forward to a few days away. **

** Wednesday morning edit prior to publishing.

I was expecting and promised the return of money from family which was going to pay for spending money to go on holiday. Said money has not been returned and I’m simply not able to get a reply from my brother (who is lousy with answering the damn phone anyway). I’m in two minds as to whether I cancel the trip, we really can’t go to Switzerland without money, I remember how expensive a bag of groceries or a sandwich is and I haven’t lived or visited in three years.

As I cope with interaction with others and daily functioning by use of creating plans, routines and structure, I find myself currently wanting to tear my skin off, whilst trying to type whilst stimming with my head and feet.

A patient without patience

Finally heard back from Bradford Royal Infirmary. Well, I chased them as I had to change my mobile number anyway.

My appointment to have the metal work removed is on the 30th of September. This is 11 weeks after my accident. Almost three months! Now, I appreciate that the NHS does wonderful work and that I’m not a life or death case, but for a simple day surgery, this seems a stupid length of time.

This compounds my frustration as I have a weekend away with my girlfriend booked in mid-September and we are in the Alps and will want to go walking and exploring in the mountains, that’s why I selected that particular area as a base. Therefore, we won’t get as much out of the trip as hoped for and that frustrates me.

Plus, this long off the bike will affect my fitness badly and I have other plans in the pipeline which require me being fit.

I either try and push through with the help of painkillers or I continue to take it easy; neither of which are ideal. I’m hoping that the responsible local authority admit liability before this date and we can move forward with great speed.

I find that patience is not my strong suit, I want results and I want them more or less immediately, maybe that’s reflective of a speed of modern society or maybe it’s a part of my psyche, maybe it’s related to my Aspergers. I don’t really know, but I know that I hate waiting. Once I can visualise something, then I become incredibly focused upon attaining that goal. I realise that my level of drive is often a positive thing, but it drives me mad when factors are outside of my control.

In the meantime, I’m forced to wait and that increases my frustration and anxiety.

I’m sure that I’m not the only one who feels like this and I would be very interested in speaking with others who feel the same way.

Differences

I had a conversation last night about a potential collaboration project with a friend who has an autistic child. She asked me for advice in relation to meltdowns. As I’ve said before, I am not an autism expert nor am I a professional working in a clinical field. I am, however, a keen advocate on equality and integration for all and I have an understanding on how my own autism affects me and my life.

Where does my autism stop and my personality begin?

This is something of a difficult question to answer. Like anyone on the spectrum, the impact of living with a neurological difference impacts upon us in a myriad of different ways; each of being different but sharing some common ground, insofar as difficulties in communication, social interaction and compulsive or obsessive tendencies.

Brookdale Triad Diag Updated I don’t often have catastrophic level meltdown, in which things get thrown and damaged. I blame slam doors and such, but the only real damage is to myself. Meltdowns are hell, but we, as autistic people don’t have control over them, or our behaviour during these moments.

In reality, I am much more passive and I tend to simply ‘shut down’, this is my brain telling me to simply disengage in order to protect itself from over stimulus. The effect of this from the outside is that I appear to become sullen and disinterested in my environment. I’m neither, my brain has just too much processing and I need to take a mental downtime.

Some things which help me.

Knowledge:

The old adage about knowledge is power, I’m not sure that it’s actually power, but it is empowering. I try and learn as much about the condition as possible, this allows me to understand why I react to things in the way I do and helps me to begin to find coping strategies.

2. Headphones:

Good headphones and music to help reduce the impact of the environment upon me. Music is very important to me, and as a former DJ I have a lot of it. Music is very subjective so I wouldn’t claim to have much in the way of bad music. If I’m using public transport, I will have music on. This allows me to have some control over the level of noise.

3. Fidget toys:

I have several items which allow me to move my hands and fingers.

4. Compression clothing:

I favour clothing which fits close to my body. If I’m entering a high stress environment, I will wear a t-shirt which applies pressure to my body. It’s like being hugged, I much prefer a firm hug.

Again, any or all of the above may help some people. It really is a case of trial and error. As an adult, I am finding coping strategies which reduce the sense of being completely overwhelmed.

I hope that this helps with further understanding.

Energy levels depleted

It’s taken me longer than I planned to write this entry because of my lack of energy. Writing about this whilst in the throws of it has taken more effort than I had planned but it’s a way of creating a little structure to my Wednesday.

My routine is shot to all hell at the moment. My normal routine is get up, breakfast, social media stuff and personal admin, tutoring, lunch, chill for an hour to allow digestion and then training. At the moment, with the pin in my ankle limiting what I can do, I’m not training. This has thrown my routine completely out and therefore I am struggling to find any order.

I realise that not training is the logical thing, I also realise that the current pain levels are affecting my motivation and energy to say nothing of the effect on my mental state. I’ve had to cancel a couple of races I had planned to do in the next few months, which is incredibly frustrating; but I know that I will just not be race ready. To this end, after surgery, I need to reset goals and restart my training programme. I also need to give myself an event or day out on the bike to mentally look forward to. So that’s my physical health discussed and I apologise to the people close to me about moaning about being in pain and feeling general frustration and malaise.

With all of this in mind, I thought that it’s important to talk about the effect that these changes can have on a person’s mental health. For me, I’m a person who doesn’t sit still for long. I struggle to simply sit and I’m always moving; partially I use pacing as a stimming behaviour, especially when I’m on the telephone. At the moment, being forced to do less, is leading to a feeling of going from having boundless energy to having none. I literally fall asleep constantly, lack of routine means that I don’t have the energy to establish a new one and my patterns are completely out of synch.

Having done some research, it would appear that the cause of this is what simply referred to as ‘autistic burnout’. This might also seen as the neurological effect of putting the brain and body into ‘safe mode’ which the brain and body does in order to protect itself from the difficulties in life.

Symptoms include, but are not limited to: –

lack of energy and a growing lethargy
avoidance
changes in appetite
changes in sensory tolerances
changes in use or modes of language
struggling to regulate moods and emotional state
slowing of thought process
brain fog
lack of ability to motivate oneself

All of these things may appear to manifest in a similar fashion to depression and obviously, this makes diagnosis all the harder for professionals. (Which, I am not.)

I’m a highly logical person and I question why do I have this feeling then? Research states that we, neurodiverse people require more time to decompress than others; we often do this by engaging in our obsessions. Back to mountain biking then; I can’t ride and therefore I am simply not able to enjoy my obsessions and this means that a little like a pressure cooker, the pressure increases until something must give.

Anyway, until next time.

A couple of great articles here and also here