Hair today… Gone tomorrow

IMG_0068_2

Yes, that sweet, badly dressed child in the picture is actually me: just a very long time ago. Note the length of my hair.

I hated having my hair cut, or touched in fact. This was at least during the 1970s, so most people had dreadful hair, meaning that I was not alone.

I had to be forced into having my haircut, generally when I could no longer see through the fringe. I hated the barbers, always fearing that they would cut me. I also hated that sitting still in a queue waiting for something I found highly unpleasant. Further to this, a stranger entering my personal space, armed with something sharp and pointy, with noises from everywhere and people I don’t know surrounding me in what I found to be a highly stressful environment was something to be avoided at all costs.

Consequently, as a child, my hair was often cut by my grandfather, who was an engineer and not a barber or hairdresser in any way, shape or form. This meant that I was less distressed by the experience of having my fringe cut (more often than not, it was as much as anyone could manage), but the reality is that had, at that time, I have had any awareness of style, the embarrassment of the hairstyle would have been mortally distressing.

I have spoken to several people with children on the spectrum and this sense of hating having a haircut is not uncommon. The National Autistic Society offers some advice here. 

Further advice can be found here.

Additionally, as awareness of Autism grows, so does the number of people who make efforts to help people to cope and lead as full a life as possible. This includes hairdressers who provide a more comfortable environment for people to have a haircut in and a simple Google search should help most people who are looking to help a child with sensory issues in this area.

Now, personally my hair, when I had some, was always very straight, which made it impossible to do a lot with, especially whilst growing up the sensory issue in this area reduced.

I found that as I was growing up, finding a hairdresser or barbers with a minimal queue to be helpful, preferably one without too much paraphernalia within my line of sight to be beneficial. It was actually rather difficult to do anything much with my hair; and believe me, I have tried.

I stuck with the same simple hairstyle for well over a decade, but it was at least short, neat and suited me, reasonably well.

I then began to become more ‘creative’ with my hair, at about the same time that it started to ‘disperse’. I had a mohawk for a while and then when the hair of the top had become too sparse, I grew the hair at the back into a cue, which was frequently plaited. Laugh, if you must but remember that ‘Hey, I’m a Goth, silly and quirky hair go with the black wardrobe and clumpy boots!’

In a similar fashion, my hair has been, black, blue-black, red (like Scarlet Red), purple, white blonde (for about ten minutes – a Glaswegian friend informed me “You look like a f*&ckin’ lightbulb!”) and on one fateful home dying event, a pinkish-gingery-blonde, best described in the immortal words of Billy Connolly as “Turkish Hooker Blonde”.

My half-brother, who is six years younger than me started to go bald far before me; the difference being that my brother had long blonde hair and is still, to this day, using a carefully haircut so as to attempt to deny what is blindingly obvious, especially on a summer’s day.

In contrast, whilst I had to invest in a hat, life without hair is far easier. It also seems to suit me and in exchange, my facial hair has been cultivated but I despise the ‘hipster beard look’ so it’s kept short and tidy. Again, the beard has allowed me some room for self-expression and has been several colours; more recently, I have embraced it more naturally and accepted the fact that white is overtaking the residual colour.

My advice is that it’s not uncommon and that there is now advice out there and people who are skilled in helping people with sensory problems involving haircuts. It’s also not something common in adults, so the key is patience and understanding. I hope that I have helped a little.

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.

 

Externalising thoughts

This may also be referred to as ‘self-talk’. I cannot remember a time where I haven’t done this: sometimes it’s in order to plan my day, organise my thoughts or others, it’s just to allow myself to slip into my own fantasy world in order to escape the pressures of reality.

Once again I will restate that the traits that apply to one, may not apply to everyone on the spectrum. However, research amongst the community shows that a reasonable proportion of people may well exhibit this type of behaviour. Hence, I feel it worthy of discussion.

We are creatures who are likely to struggle with either communication, social interaction or both. Therefore it makes sense that we may vocalise to ourselves; we don’t have to fear boring someone else and we don’t have to engage with others if we don’t feel like it.

As child, it was easier to mask, although I suspect that, even then I was seen by many of my peers as ‘as a bit odd’. As an adult, talking to yourself, especially in public is likely to attract strange looks or outright concern from members of the community. It is, therefore, necessary to adapt as much as possible: I am not advocating that we must stop doing it (I haven’t, at least not entirely) rather like stimming, this is comforting behaviour. Here is a couple of tricks to help avert concern and alarm in the general public: –

1) Headphones

2) Wearing a scarf or hood *

3) Considering where is a ‘safe’ space.

In these wonderful days in which are, or can be connected to the rest of the world almost constantly, earbuds are wonderful, I love music and audiobooks and I also need to be able to express myself, to myself. So when my internal monologue just isn’t enough, or enough fun, headphones allow me to walk along the street without being considered to be a threat to the community.

* a hood, or scarf are weather dependant, but can be a great way to hide.

Chattering away to yourself in first or third person whilst sat on a bus or train is likely to ensure that you get a seat all to yourself, but may also cause concern amongst the community at large or result in unwanted attention from people.

#autism #aspergers #autisticspectrumdisorder #mentalhealth

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.