My left thumb

See? See? See what I did there? 

If you are in anyway weak stomached, this post may not be to your taste.

Since about the age of ten I have, with various pauses and breaks, religiously torn the skin off my left thumb. Why my left thumb? It is the one that the skin splits and blisters on the most. I remember then I was younger it was both thumbs, and occasionally my feet, but now it is almost exclusively my left thumb (although my feet aren't beyond reach). 

It doesn't require too much effort either. I don't need to chew it or wet it, recently there's still old lines,where I was able to reach the maximum expansion of weak skin before it either tore to a deep spot that was too sore to continue or I couldn't get purchase with my nails, while I have been able to start new expansions on newly formed skin that's already 'white' and ready to lift. It often starts along the creases of the tumb joint, where the skin will naturally begin to break as I bend my thumb in numerous ways. 

Sometimes only the very too layer comes away, sometimes multiple layers come away in one go. While strips, both shallow and deep, usually don't led to deep blood drawing damage, but once it narrows at one end, I usually expect the pinprick pain as it tears deep and does draw blood. That's not to say, often on my feet, that a broad stretch will with open a deep strip of blooded flesh or again multiple pinpricks, wells of blood that sting and cause reduction in function.

I am so adept at striping skin that I can do it one handed, while driving. Of course water helps and I often find myself in the shower helping it along. 

Whyi do it is probably more interesting, and my main answer is I don't know. I am sure it falls under some sort of self harm and I have never spoken to a professional about it. The girls in work know about it, although we never discuss it. My parents know about it, as does my partner.  

I often fob it off as a burn, stress, but mostly it's habitual boredom. It provides a feeling of release as much as it is entertainment. I don't stop until my thumb is either stripped or it has become to painful to continue. It is almost as if I trance when I do it, oblivious to the world around me, focused solely on the destruction of my thumb. As soon as I'm done I get mixed feelings, there's relief, freedom, satisfaction, but these are often overridden by shame, disappointment in my inability to prevent myself from destroying something that belongs to me, and a small pile of skin flakes that remind me of what I have done. Mixed with these are a confusing feelings of pride, pride at how much I have removed, how big the flakes are and how my thumb feels. It no longer has a ridges texture, after years of the tear heal cycle, it is smoother than my other fingers,

I suppose I should be concerned, worried about health implications and social implications from what is essentially self harm, but I never am. I just let it heal, with not real attempt to hide it any more, no real discussion of it, I have found this post hard to write simply dpbecause I lack the language to describe both the physical process and the feelings that ensue from it.

The photo below was taken as soon as I had finished an opening. It's raw and painful, but sometimes these things need to be shared.

 

Hidden

Ok, so that last post was a little lacklustre. Mostly caused by a lack of thinking critically (like all of life's problems) and my current ill health, it only skimmed the surface of my control issues and how I both misuse them and switch between various personas and shields to both protect myself and appease others. While that is a topic I will come back to after further thought and examination (and examples), I want to talk a little about how intellectual disability is often hidden, although from my "twice now" post, I can either walk when I am tired or wear my stylish glasses.

Dyslexia, dyspraxia and aspergers are all variously hidden. There's no guide dog acting as my life companion or a wheelchair, which is so synonymous with disability it is used as the national symbol for disabled access or services or parking. Although, reading that last part, a dog life companion sounds fairly awesome.

Before I continue I want to just go off on a slight tangent. I am incredibly lucky. Occasionally I feel that this blog could very well devolve into a whine fest, full of the internet popular "white whine" although, perhaps more a "disabled whine". (Although, maybe disabled wine might sell like those monks booze). I have both natural luck and family luck. The ins and outs of my history doesn't make good reading, but being able to produce a blog at all is a minor miracle, and having escaped one fate, even with caveats of disability, cerbral palsy, dyslexia, dyspraxia and aspergers, I have all four mildly. I am not wheelchair bound (although I will joke that is my destiny), I am variously able to write, read and while I am delightfully uncoordinated, I can drive (who just gave up driving for life?). I do blend in to regular neurotrophical society with remarkable ability. Some of it is self taught, some of it is cultural, a lot of it is excellent parent support, people being very understanding (being given out to for calling myself a retard by colleagues, college professors, partners and others is both hilarious and disappointing). Right after that foreshadowing paragraph, let's continue.

Being able to "hide" helps mostly, I don't suffer perceived discrimination or snide comments. The idea recently that there are levels to every disability certainly applies to me. George Takei, a  man I love not just for his Star Trek fame and roles, but his championing of gay rights and his highlighting of uncomfortable truths about the American WW2 record, was hounded for sharing a meme of a wheelchair user standing to reach alcohol (whether this is right or wrong I will leave to my readers) but it highlighted that disability is not a black or white issue. Anyone with a disability is very capable of doing anything. It is not disability, but this ability. We can do more than we are often credited for. 

This issue is turning into a delightful minefield, you may want to pretend to be a penguin at home.

The story that jumps to mind is one from a text book from my youth. The tale of two ladies who go for coffee every week, and the lady in the wheelchair is talked about, not to, as staff ask the "able bodied" lady "does she take milk?" 

Because I blend, it is when I open my mouth that I give myself away. I have gotten better at this, silence being a safe refuge, or topics of bland yet not weather related subjects. I often find the party trick of when surrounded people you don't know at a party, ask questions and make others talk about themselves, thus making the silent approach acceptable as someone tells you facts about their lives. This lets me soak facts for later use, both with that person and when bored in work I can leave my colleagues baffled.

My ataxia is now beginning to signal something is wrong, and to trained eyes it is a fairly obvious sign of cerbral palsy. I am hoping my exercises will minimise my ataxia and the delightful obviousness of my condition. Still, joking that I shouldn't be allowed make the tea and carry it to the office does tKe the sting out a bit.

Right, that's a solid page for now, plenty to revisit I am sure. Goodnight.

Control

How do five days vanish into nothing and I find myself behind?

I want to talk about control.

It seems to be a common tread amongst Aspy and autism, that we enjoy control, be it of our environment, what we watch, what others are doing, how life runs.

I have developed all sort of control. I control situations by being subtle, by seeming timid, seeming charming, making others feel that I am the one who can get jobs done, by making people do things because I can show them the persona or attitude they want. I'm the good guy, solid boyfriend, totally loyal, thoughtful.

However, for anyone who's had a look behind the armour, I'm most likely not the nicest person ever. But I can control others using a persona that's required. Oh, and sarcasm.

Control does have intrusion in my life in other ways. I hate cinema, mainly because I can't turn if off or flip channels, I don't like other people showing me stuff to watch, as I get no control over that either. I love TV, because I can mess with that, I can turn it off, change it and generally choose what I want to watch.

This leads me to the Internet. I love watching clips on a popular tube type website (YOU work it out). The Internet not only feeds my control, but also my sensory seeking behaviour (more on that later) and I can claim its educational (it is, if you know where to look, or how to lie).

Smells

Talking about super powers.....

I have a really sensitive sense of smell, to the point where I can tell someone has been smoking in a room that's been empty for a long time and cleaned fully.

I'm not sure if this is an Aspie trait, as close family members have strong noses, but it does have impact on my life.

Silly things, like I went into a bath soap shop and almost immediately had to leave as the smells became over whelming. I don't suffer meltdowns as they might be pictured (tantrums and screaming) but when it feels like electricity is sparking down the back of your skull, it can be mildly unpleasant. I can identify these moments and leave as soon as I'm able.

The only real trouble is when something has been cleaned. It might smell clean to everyone but I can get the afternose of the vile previous smell.

Anyway, I'm off to tie a sheet round my shoulders and sniff things.......

Selective pressures

Repeat after me: this is not a work blog, this is not a work blog, this is NOT a work blog.

Right, now that we have that out of the way, lets talk about work.

Aspies struggle in work, I have struggled in work, and there's some key things that I have discovered about managing in work.

Work, as much as it gets moaned about ("we wouldn't call it work if it where fun"), is an essential structure in life, and it forms a framework for me, at least. It gives me an abundance of human interaction, it gives me achievable goals and relatively easy tasks. I am incredibly lucky (repeatedly) that I do something I love, that I can manage, and that I find rewarding. Without work, what else would I do?

I've already discussed the idea of getting a support worker/nurse to speak to a manager, who can provide skills, insight and management techniques. It also gives the support worker a chance to get a feel for the work environment and the management team, giving them the ability to give tailored support and if needs must, tell the Aspie when it's time to find a new job (something I'll accept is tough for Aspies as it is).

The Internet loves lists, so here goes (on a side note, I hate slide show lists):

First rule: Be honest. "I have this difference, but these are my coping mechanisms, this are my behaviours, this is my support worker and this is what I do well." It's how I got my current job, I was brutally honest, and here I am more than a year later going for a promotion and have extra roles.

Second: As mentioned, bring in that support, ask for reasonable adjustments, whatever is required.

Thirdly: Try to gauge a good manager. This is tough, I know, but again this is where a support worker or nurse can do wonders. They will spot the managers who actually care, as opposed to those who want to just do the bare minimum and then wash their hands as someone struggles. I have repeatedly turned down jobs because the manager has come off wrong, or I didn't like the work environment. I have stated that money won't buy me, but a decent manager will.

Fourth: Find a job that encompasses a field of interest. It is repeated as major trait of Aspergers that we have a few special interests and social situations, and this is certainly true but that doesn't mean an aspy cannot do something they are gifted at. I've been told my speciality interest is women (Ladies) and the handling of social situations with them (read: flirting), but honestly my current job, and the current speciality certainly, is an interest of mine (I totally didn't buy the book for the next course before the course has been announced, I swear). This special interest become a TV trope of course, claiming we all have superpowers, but unless being able to nap anywhere is a superpower, I haven't got one. (Narcolepsy Man: STOP! or I'll zzzzzzzzzzzzzzzzzzzzzzzzzzzz).

Five: Pick a specific area to work in. Yes this sounds obvious, but in my current field if I worked in a large workplace, with many departments or sections or offices with uncontrolled workload coming in I would not do as well as I am. By selecting the pressures, I am thriving, eliminating certain factors that may put me in a spin by picking a workplace that automatically eliminates those factors.

I am very sure this list isn't exhaustive, but right now I'm drawing a blank (I got distracted by TV).

I'll revisit it as soon as my brain starts working.


 

Queuing

The last post was a little, em, heavy so just a quick note about what I love about living in the UK.

People Que, for EVERYTHING, and it runs very deep that it should be done properly. It gives order to life, even done in small parts.

Oh sweet sense of justice, how people regulate the Q themselves and how people tut when some one skips or won't let people off buses and trains first. Of course, it wouldn't be British to actually complain.......

The Atheist Aspy

Wish I'd thought of that as my blog title. Oh well, too late now.

Straight into this minefield, because I'll annoy Aspys, Atheists and the religious community. Moments when I wish I was a penguin......

I was raised Roman Catholic, and many of my life references and touch stones, even still, revolve around this world view. I enjoy Christian holidays, I understand Western view points because in the majority the West is Christian, although this is changing (no I will not be dissecting the move of Islam into western culture, or the divide etc. I find Islam to be a very sensible religion. SHOCK an atheist said he finds religion sensible on the Internet, bring out the pitchforks).

Now, as many may know, RC isn't a religion one simply leaves. I don't mean a priest stands at the door with a gun and a Bible or that they ask you to return forms in triplicate with references from every teacher who ever had to suffer you as a student, signed in the blood of at least one martyr. RC just moves you in category from active to lapsed.

Now I'm sure there is an official way to leave, involving forms in triplicate and questions about what I was doing the third Sunday of May in 1997 at 16:45. Life appears a bit too short for these things, and I don't even fill in half the forms I should fill in (like job applications and birthday cards. Sorry Mum/Dad/random family), and it never hurts to have a back up plan (I cite Voltaire as my inspiration).
Slowly, like a flan in a cupboard, I've collapsed into Atheism. Not angry atheism, before anyone thinks I'm out to rip up Bibles and take a hammer to Churches. Just no real belief in anything organised about God. It has led to some insights and thoughts, and some very strange discussions.

I generally find that a live and let live policy works best, and an almost American Libertarian view of: 'you do what you want all you like, as long as it doesn't impact me.' Unfortunately American atheism and its current battles impact my views (thanks YouTube), but also inform my thoughts.

There is nothing wrong with believing in something that might (and could even plausibly) be true, like a God in general, or even a Christian God specifically, and i know many good people who's lives are shaped and informed by their beliefs. One of my favourite moments in the last year was discussing respect for others beliefs and the idea laid down in the American Constitution that freedom of religion means freedom from religion with a friend and despite the fact that she is a believer and I'm not particularly inclined, our world views and policy run along very similar lines.

So we come to the crux of my argument (because there is a lot of ground to cover, and one post won't cover it all, I'm not St Bridget with my magic cloak). I like science, I use science every day, it provides a foundation for the knife edge that modern society is based on (we're three square meals away from anarchy may no longer be the case, we are twenty four hours with out wifi before the collapse of modern civilisation). Science is a way of knowing, a way of learning about both ourselves and the universe. Science shows us everything from the first millisecond of the universe, to where humans came from, to how to feed humanity. It is based on fact and rigorously reviewed and checked. It is self correcting, things we thought we knew thirty years ago, we don't know at all. science is what beats diseases, is currently fighting to contain Ebola ( arguments over whether or not the with holding of treatment is politically motivated or runs along racial lines is for a different post or blog, although my faith in humanity would be shaken to the core if someone provided proof that people would be left to suffer because of their skin colour.)

This is when my hand starts going for the lead pipe, when people start telling me that science isn't true, that it is disproved by incomplete, non peer reviewed studies conducted by people with questionable degrees and morals (yes I went there: who can honestly tell people they will get rich by giving money to church?).

The most eloquent response to this is Dara O'Briain, an Irish comedian. I'll share a link but in essence he says:

"Science knows it doesn't know everything, otherwise it would stop. That doesn't mean you can fill in the gaps with whatever fairy story you like".

http://youtu.be/uDYba0m6ztE

While having an original thought in my head is more entertaining, I really cannot put it better than more prominent figures who actually have traffic, unlike small timers like me who blur into the back ground along with every other blogger. That said, another voice in the darkness that's not shouting 'I told you so' when it is too late might just help. Its why i started this blog (although I started it to share my Aspy experiences, not expressly my love of science), as a voice to show that Aspys can function and are people and we walk amongst you, and if there was anything I learnt that might help others.

This post has to end at some stage, and I went wildly off topic, so this topic will be revisited, although its a heavy one to talk about.

for now lets be Penguins in minefields.......

(That clip covers a lot that i agree with, this is blogging for slackers)

Twice now.

About three years ago, a while after my London reassessment, I went for an eye check mainly to utilise the tint test that I had undergone. I had never worn glasses in my life, but I had friends in school (in London, because in Ireland learning differences simply mean you're stupid and should be held back a year to catch up to the other classes. Oops, the stuff I say when I'm tired!) and I remember that the glasses went down like a lead balloon, the sixties having passed in a haze of smoke and tinted glasses no linger being groovy. 

But with a diagnosis of dyspraxia (seriously considering getting a counter plug-in that pings every time I mention a difference), and the tint specifics in my pocket, I headed to the eye doc. Turns out I have a stigmatise too, so I actually need glasses for reason beyond needing to look off. And that is how I felt. That wearing purple tint glasses was just a giant billboard declaring:

"Warning! Defective product." 

As I went to collect them, I ran into a friend who told me they would look cool due to the return of hipness and girls in alternative bars would swarm me (this has yet to happen, but I live in hope). A friend accepting that I needed tinted goggles made it easier, but every time I used them they got commented on, and while not always negative, made me self conscious. So the glasses went in a box.  One pair got scratched beyond use and the other pair popped a screw. 

Recently, under some "guidance", I repaired my glasses and began using them again, only for them to fall out of my pocket in work and pop a screw again. This time, the tiny screw managed a Houdini, so it was a walk down to the local optometrist. While repairing them, for free I might add, he mentioned an article in the Lancet recently that threw doubt on the usefulness of tint (I'll link in a future post, if I find it).

How does this all tie into the title?

Well turns out I have had a bigger billboard that I didn't realise and no one seems to spot, or comment on, and in the last two years I have had two random, friendly people, comment. 

Last year in a cafe, a gent at the next table watched me walk in and then told me it was Cerbral palsy. We talked and he kindly bought me tea, tell me that we should stick together. It was touching and while I am biased, confirmed the diagnosis I was awaiting.

The second time it happened was today, a gent on the bus asked as I sat down, making me smile. I now have a nice letter telling me what's different with me.

It makes me comfortable with my glasses, with how i walk and how I am.

Just a thought.

Just thinking

I set this blog up to follow my new journey into the diagnosis of CP.

Meanwhile, during the ad break, I did that.

So guess that wraps up this blog quite neatly.

Goodnight.

Mybe i'll do a montage clip show later.......

The biggest change

So, during our short commercial break, a few things changed. 

I moved job. 

I changed partner. (Her observations will feature in this blog, as often they are both hilariously true and scarily insightful.)

And I moved house.

The last bit is the biggest bit of news. I have lived on my own before, and for some Aspies it is a huge achievement, something some community nurses strive to achieve as an end goal to give an Aspie some sense of independence and freedom. 

I have never successfully lived on my own before. As discussed previously, success can be measured by many different yard sticks, and I suppose that by some degree, simply being an Aspie living on my own is a success. However, to quote the aforementioned partner out of context: are you reconsidering acting like a functioning person. 

Yes. Yes I am.

Previously while living anywhere, my living quarters has devolved into a pile of unwashed clothes and takeaway food cartons surrounding a bed made with sheets that didn't know what the inside of a washing machine looked like.

When I started my blog, I was house sharing with two guys and living in a variant of the aforementioned mess. I can now proudly say that I have moved into a two bed apartment, one room for sleeping, the other for reading/doing office work/having guests stay (now if only I had friends), and it's been relatively mess free for an entire month.

Achievement unlocked, living like an adult.

Diagnosis: probably

So, last time we looked I was enjoying an MRI brain scan that won me a bet on whether or not I had a brain, and was looking at a probable diagnosis of Cerebral Palsy. 

A year later (the narrator in my life was not kind enough to simply say "ahem, some time later"), and a spine scan later, I have a piece of paper that states I have probable mild cerebral palsy and Poland Syndrome.

I, very luckily, was offered physiotherapy  treatment very quickly, and have begun doing simple exercises to begin to rectify problems. Interesting things have been brought to my attention by the physio, like I throw my body forward to drag my legs after me and I need to stand up straighter and allow my legs to pendulum swing, thus reducing my need to drag my weaker right leg after me.

I'm feeling the difference already, with my current partner noting that I am taller when I try to wiggle my hips to create leg swing. 

What I always wanted, bum wiggle.

A break apparently

So I went for coffee and a sandwich and now it is a year and a half later and I haven't updated my blog. It's been a good year and half. Will have to blog about it some time.

More soon (ish) 

Paul