Food, glorious food!

food

I was discussing the issue of food, diet and the neurodiverse yesterday evening and I had to consider if and whether my own dietary choices were affected by autism, and, if so, whether this is still a case.

I cannot speak as a parent, for I am not one. I am speaking in relation to children I’ve been around and from my own memories and things I have been told about my formative and early years. I’ve also not been helped by the fact that my mother’s ability to cook and her idea of a varied diet are almost non existent.

However, as a toddler, I am told that I would only ever eat one type of food, either tinned spaghetti or spaghetti hoops; occasionally, I would have sausages as well. As a small child, my mother and I lived with my grandparents and my grandmother actually had the ability to cook and bake.

Thus, from an early age, I was encouraged into the kitchen, encouraged to mix things by hand, often doing the thing I dislike of getting my hands sticky or dirty (and spending more time washing them, then getting them dirty or sticky; which is still the case!) My grandmother encouraged me to explore tastes, colours which weren’t orange and textures which weren’t slimy.

I clearly recall to this day, the smells, the light and senses in that kitchen above any other.  I remember being allowed to lick the spoons, or bowls after something had been prepared and was in the oven. I remember, being keen to be involved in the cooking process from this early age and whilst growing. Somewhere along this journey, developed a love for food, for eating and preparing food.

My mother’s attempts at ‘cooking’ should have been enough to put me off; she never quite got the hang of it and meal variation was based upon ‘I feel like ____ item’ and then it being the sole option for at least 6 months. People assume that I exaggerate (including her, who will swear blind that we all had Cordon Bleu standards of find dining every night) and I wish that I were. So, at times, I had a bad relationship with food, in places. I was always underweight because I was active and had no concept of balance.

Skip forwards a couple of decades, I’ve seen people who with similar passion for food, have taken this to a professional level: something which I never had any desire to do, I once worked for about 9 months as a kitchen porter and seeing the chef’s, the unsociable hours, dreadful working conditions, tendency towards drug and alcohol abuse and general poor lifestyle that was a side effect were dissuading factors even when I was eighteen years old.

I do still, however, get great joy from cooking; especially for others. Alone, I can be given to bouts of ‘can’t be arsed’ and grabbing something convenient. However, when I have company or my fiancée is here, I enjoy planning menus, preparing and cooking. I also get pleasure from the fact that others enjoy my efforts.

I do, frequently cook some favoured dishes, I gave up eating pork about 5 years ago, when living in Switzerland because I made friends with some local pigs in the village I lived in. Similarly I made friends with the veal calfs and quit veal; although I only recall having eaten it a dozen or so times. More recently, I had the wonderful experience of feeding lambs and goats and kids. Consequently, I’m grateful that cows, fish and chickens aren’t that friendly.

In respect of how my autism affects my diet as an adult, I feel that I do try to have a balanced and varied diet. I do, however, tend to eat all of one thing before I start on another, which some people find strange. It’s not to say that I don’t appreciate how one thing compliments another, but it’s just the way that I’m wired. How to try to reduce me doing that? Stews, casseroles and such; everything mixed together and I probably won’t try to separate them. Probably, but I’m not sure how much is conscious anyway, such is neurodiverse behaviour.

Our tastes do develop and I was discussing with another person how her autistic child favours beige food. My own tastes continue to enhance, I now like things which were abhorrent a year or so ago. I think that a love and passion for food and dining is a positive way around limitations.

Now, sports nutrition: I have certain specific meals before a race or event. The evening before tends to feature pasta (although I don’t tend to carb load for a XC race which is 90 minutes in duration) and fish, usually salmon and my favoured method is in quiche, which something like spinach. Plus, salad. On race day, it’s not alway possible to eat a healthily as I would like, race times and facilities dictate to an extent. I try get in lean protein, a chicken breast or something and always eat a couple of hours before start times. In terms of during an event, I am moving away from using energy gels of late. They create litter or require that you put a sticky packet back in a jersey pocket, which in turn becomes a coagulated mess and it’s just unpleasant to deal with afterwards.

With these facts in mind, I have been trialling energy chews; currently using the Clif Energy Blox  as I can throw a handful into a jersey pocket loose and grab one or two as required. They also have a texture rather like wine gums, which is preferable to gels, in my opinion. I also use Torque Fitness energy drink in a bottle, which mixes well and works well with my hydration and digestion**. How much or how little of each depends. Although less on a standard ride than on race day. Post race, I tend to just a USN Lean Whey Protein shake **.

** I am not paid by these companies, nor do I receive any sponsorship or free products

Feeling a lack of control

Roller Coaster

As a person, I crave several states of being and living: control, order, regime and to a degree, certainty. The problem which I am currently encountering is that a large proportion of these are not entirely within my own control.

A couple of weeks ago, I was having a discussion with a person who having served for several years within the military they had now embarked upon a degree in a language, as a mature student and, like many undergraduates (even myself, back then), saw themselves as having a rosy future after graduation, so long as they made the effort to be successful. I remember pointing out that a degree doesn’t actually guarantee you anything, save for a sheet of paper and the entitlement to use a collection of letters after your name. It a may be a conduit to something else, but it’s no longer a case of a degree/masters/doctorate is a guarantee of employment and a more protected passage through life. Those things died out decades ago; I am currently not the only unemployed undergraduate I know of and I’m certainly not sitting on my metaphorical laurels (6 interviews in the last 14 days!)

Currently, my own journey feels rather like being on a fairground ride and I’ve always hated those. In the last few months, I have been messed around more than I care for. In fact, today I have been told to ‘Piss off, if I don’t like it’ by a school who having offered me a role at 20 hours a week, on a good hourly rate some three or four weeks ago suddenly went silent about a start date and face to face meeting. The director of this company then went to China on a business trip and no one answered phone calls, voicemail and email only managed to illicit a reply after 6 requests for an update. The school then re-advertised for online teachers for 4 hours a week and that this was the only reason I had been given the courtesy of a call today (the call was 18 late). I will refrain from naming and shaming the school, but they are based in Leeds and teach non-native English speakers, so anyone who reads this and is looking for TEFL work may get in touch if they wish clarification.

The Autism Act is designed to create a level playing field for those with autism. However, does it?

Reliance on legislation means that we need to make potential employers aware of our condition; which is something we may not wish to share. Once we have informed people of this fact, we cannot retract the knowledge or stigma which might be attached to anyone with any form of limitation.

The employer cannot reject a candidate specifically because of autism, but of two equal candidates, one on the spectrum and one not, well I’m not sure if that has a bearing on helping to make a difficult decision easier or not.

Personally, I’m not good at meeting a lot of people for the first time; it takes me a while to settle into an environment, this can be social or professional. Until this becomes familiar, I will being ‘masking’ and that requires a lot of energy to appear to be able to fit into a large group or appear to be making eye contact, i.e. NT behaviour. Therefore, an interview is a tough process for me and others on the spectrum in most cases; in very rare cases, I find people who I automatically can relate to, but this is rare – I recall once being interviewed by a fellow Goth for a role in a law firm, who I suspect was also on the Autistic Spectrum because we both got rather excited about music, club nights, festivals and so on, to the extent that I’m not sure that we discussed the role or my skill set relating to it the job for more than a few minutes out of an hour long interview.

The problem I have is that my desire for certainty, control, stability and all of the other external things I desire is that I can only control a small proportion of the equation. I can continue making applications, completing forms (which require a lot of energy from me),  putting on a tie (I loathe wearing a tie), attending interviews, spending countless hours in interview preparation and research and so on. I’m just hopeful that the result will eventually turn to my favour.

To anyone else in the same position; I wish you the best of luck.

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 UpdatedI 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.

  1. 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

 

Things I can’t control

People with autism need and form patterns, plans and routines. I’ve always tried to plan everything to a high degree of detail. I meal plan, I plan my working day, I plan my training and relaxation time. Basically, I’m a logistic dream or nightmare, depending upon ones perspective.

I’m currently waiting on my girlfriend to arrive back in the U.K. from Sweden. She’s had a fun trip, visiting a friend and I’m very much looking forward to spending the weekend together; and, yes I do have meals planned.

However, the fly in the ointment takes the form of Norwegian Air deciding to change her return flight and no one thought to notify her of this change. Not the website she booked through or the Airline themselves. The flight was moved forward, by a matter of five hours. I’ve spoken to the website and been informed that the next direct flight to Manchester is at 07:00 tomorrow! Or she can get a flight tonight and have a nine hour layover in Heathrow airport.

I now can’t get hold of her to find out more information. I hate not being able to do anything more than I have done and feel utterly useless. I write this as a means of trying to avoid the alternative, which is simply to have a meltdown.

Transport

It’s not really a secret that I detest public transport; when I lived in London most recently, I choose to drive almost everywhere. I caught half a dozen trains during the three years I lived in Switzerland and then, only until I managed to get a car.  I cannot stand the smell that bus emissions give off, it makes me want to claw my own skin off.

I currently don’t have my own car, this leads to some things not being as easy as with one. I can’t often get to races, which leads to my not racing as much as I would like (although I am still out with injury, awaiting surgery at the moment). Also, I don’t get to see my friends, who, by and large are mainly in the South of England, whilst I live in West Yorkshire.

This leads me on to the subject of trains, I took my girlfriend to Manchester Airport on Sunday as she was flying to visit a friend in Sweden. The trains were, unexpectedly far more crowded than I had anticipated. Stuck in a metal tube with hundreds of other sweaty and noisy people, all of which have luggage was not a pleasant journey. Arrival at the airport was actually reasonably straight forward as was helping her check in and after a nice meal, I escorted her to Security and wished her an enjoyable trip.

Now to make my return journey from Manchester to Bradford, which was almost £30 for a single off-peak ticket. The ticket machine would only let me travel on a specific route, via Halifax, which in train times is a little like travelling via the moon. One train cancelled, three changes and being boxed into my seat by sheer force of numbers. The noise and smells of public transport combined with the stresses of having to determine a very convoluted route and cancelled trains all adding to the stress factor. At one point, I was so confused I asked a guard ‘How do I get to Bradford International?’ (which doesn’t exist). I arrived home in the end, just an hour and a half later than planned. Next time, I think that I’ll hire a car.