I’m not disabled!

I *could* just leave this blog entry there. Three words on the title “I’m not disabled!” and call it a day. Although I guess that’s not really why you, gentle reader, are here is it?

I’m an aspie, I’m on the autistic spectrum, I’m a mathematician, I’m a husband, I’m a punster, I’m a steampunk aficionado and I’m pretty handy in the kitchen. I’m all these things and more, but there are two things I’m most certainly not.

  1. I’m not disabled.
  2. I’m not gifted.

Over the last few weeks I’ve had well-meaning (and some NOT SO well meaning) Neurotypical types put me in one of those two categories against my will. Let me explain why I don’t feel either of those terms applies to me. (Note this is me talking about me here. I am using first person narrative here. I know some aspies and auties DO consider themselves either disabled or gifted – or both! – that’s perfectly fine. It just doesn’t apply to me).

Let me give you a bit of background here. I have an MSc in mathematics (cliché alert!) I’m a white cisgender male (cliché alert!) with an interest in sci-fi, science, puzzles and memorising facts and figures about movies (cliché aler… ooh my cliché klaxon has over heated!). Yes I’m afraid to admit I’m the poster boy for Hollywood autists. I should point out however I’m no Rainman-esque savant. I’m certainly nothing like young Simon in ‘Mercury Rising’ either. Ok yes, I bought the GCHQ puzzle book and, yes I had a good crack at some of the enigmas contained therein. I CERTAINLY couldn’t just pick up the book and decipher them with just a glance at the page! Like my MSc qualification, I had to work at them. Yet, somehow when I tell NT’s I’m a mathematician AND an aspie they sort of look at me like I’m a cheat! “Well of COURSE you passed your maths degree when you sneaked that quantum supercomputer filled with all the answers into the exams! Anyone would have passed if they did the same..” (no one actually said those exact words but I’ve had similar implied to me in the past) . Let me say two things here. 1. When I sat my exams and did my MSc I didn’t know I was on the spectrum. I was just a nerdy math obsessed geek with terrible social skills. 2. (I need to shout this) AUTISM IS NOT A GIFT!  It’s not some magic information processing system that gives the owner superhuman levels of perception and calculation! I had to study hard, revise long and was just as confused as others at times. I may have a math orientated brain but so do many many others in both AS and NT groupings. It was a long hard slog but I got there eventually. Nothing about the process was what I would call “Easy” at any time.

Conversely I’ve had people imply I’m somehow damaged goods. I’m mentally deficient and disabled. Erm… Hello! 46 years on not knowing I was on the spectrum here. I’ve held down some PRETTY DARNED IMPRESSIVE jobs in my time. I’ve owned my own flat, I’ve married and now we own our own 3 bedroom semi-detached house and a cat! I’m certainly NOT disabled. There’s nothing holding me back other than myself. I’ve had this argument put to me previously but in reference to my congenital anosmia. “Oh but you’re missing one of your five senses! Therefore you HAVE to be disabled!” again, erm no ! Does not being able to smell anything entitle me to park in the disabled bay at the supermarket? Does not being able to smell anything stop me taking a train into the city centre for a job? Or entitle me to any form of benefit? No, of course not. It doesn’t affect the way I work (it might if I was a perfume tester or a wine taster.. but I’m not and loads of NON anosmics can’t do those jobs either!) same with my autism. I don’t like crowds but I deal with them. I dislike speaking in front of the team but I do it. I get stressed by deadlines but work to clear them (and show me one NT person who DOESN’T EVER get stressed by deadlines)  My asperger’s doesn’t limit me in my day-to-day living. It might make certain things a bit harder but I still do them. I can work, travel, date, marry, party and dance like the next man. My autism is just a different way of looking at things, it’s not a disease to be cured nor a cancer to be cut out. It’s a preference for mint choc chip ice cream over vanilla,  it’s liking Jazz and hating Rap. It’s a personal way of thinking.

No I’m not gifted nor am I disabled. Who am I? I’m Pete.. pleased to make your acquaintance!

Data, My brother from another mother (and planet)

My wife and I have been rewatching all the Star Trek series on Netflix. We’ve finished the original series and are now on series 4 of The Next Generation (Henceforth referred to as ST:TNG)

Last night’s episode was “In Theory” where the Enterprise crew encounter strange dark matter deformations in space-time causing parts of the ship to phase in and out of regular space, but for me the episode is more about Data and his first “girlfriend” Ensign Jenna D’Sora.

This episode resonates so strongly with myself. Data is a friend to Ensign D’Sora, as honest as Data always is, not that he can be anyway else (in case there’s some people not familiar with the series or the character Data is a highly intelligent and analytical android devoid of emotion but with a Pinocchioesque wish to be a “real human”)

In this episode, Data tries to respond to the romantic attentions of his colleague. He’s slow to pick up on obvious signals and despite his vast knowledge he seems lost and out of his depth trying to please his partner.

I was reminded of my early dating experiences (or lack thereof) I was woefully ill prepared for the experience. One of my long time college friends still waxes lyrical with much mirth about the time we were sitting in the student campus bar and I was talking to him about how girls just didn’t seem to like me. At the same time, this girl kept coming over and interrupting me, asking me the time, asking me for a lighter (I don’t smoke), asking what course I was on , who I was with etc etc until I turned and essentially told her she was being rude and to stop bothering me and my friend and I returned to my previous conversation about how difficult it was to get attention from girls.. .. .. erm. In hindsight I see where I went wrong there.

My friends (and I had some, a precious few) loved how utterly oblivious I could be. I would take things either too literally or opposite to how they were meant to be taken.

Example number 2. After a late party out of town a female friend asked me if I’d like to stay over at her place. As it was a long and expensive taxi fare home and I didn’t fancy sitting in a bus station for 6 hours I agreed. She showed me to her sofa bed, then pointed out the bathroom and where her room was. I thanked her and made sure I didn’t go anywhere near her room, after all why else would she have told me where it was if not to ensure I didn’t actually mistake it for the bathroom?

I was in my late 20’s when I lost my virginity (not that I was ever really that worried about that) it sort of happened and I vaguely remember being told what I was doing. I didn’t really have much say in the matter. I was TOLD I was taking her home, I was pretty much TOLD we’d be sleeping together and when I told her I didn’t really know what to do (I had book learning and knew the principles.. I lacked “practical” experience) she essentially took control while I lay there feeling a little scared and unsure of the whole thing.

Fast forward many many years and I met the woman who would become my current wife. My wife has since informed me that one of my most endearing features was my openness and honesty. The very first words I spoke to her when we first met face to face (we’d chatted online previously) was “That’s the only kiss I’ll be getting” as she handed me a Hershey’s kiss as a joke (I had developed a cold sore from nerves and blurted out that I’d not be doing any kissing in case I passed it on) She laughed this off and told me later she thought it was sweet and also slightly presumptuous. Of course, back then neither her nor I knew I was on the spectrum. With 20/20 hindsight all these amusing little titbits all coalesce into something glaringly obvious.

Data had problems with his emotions, he would often be far too honest or literal. He didn’t always understand humour or slang and often misinterpreted people’s words and actions incorrectly.

In hindsight I realise Data and I have much more in common than I first realised.

 

 

7 hours and 400 miles of Hell.

Ok, perhaps not hell but it certainly will not be fun. On Friday I’m off up to Scotland to see my parents. I don’t drive so taking the train (or at least trains plural), a cross London multi-hop stage, then a long stage from Euston to Carlisle before the last train to Dumfries (the biggest town/train station to my parents) after than it’s a good hour and a half by bus home.

My idea of ..well.. I’ve already said it.. Hell !

Don’t get me wrong, I’m looking forward to seeing my parents but I’m dreading the journey. It’s Monday now and my journey doesn’t start until early Friday morning but already I’m fretting. There’s rail construction going on which is causing disruption. It “shouldn’t” affect me but I’m already worrying that it will. I panic constantly about being late. I’m not as bad as I was before I moved to London/got married but I would set off an hour early… then add an hour more for safe measures… then take the train/bus etc BEFORE the one I calculated I’d need to get just on the OFF CHANCE I missed it. So the end result I’d usually be at least 2hrs early for everything.

My wife on the other hand, ambles through life and is usually late which sets me off on one of my “fun” meltdowns. Just as she’s have a positive effect on me, I’ve had one on her and now I’ll leave later than I feel is adequate and she’ll leave earlier than she feels adequate and now we arrive slightly early/on time which is a blessing.

However, back to Friday. So I’m checking the tickets in my wallet every hour or so. Like they’re just suddenly going to jump out and wander off by themselves? But I have to keep checking they’re in there. Of course, a sensible idea would be to leave them in an envelope at home, but then I’d worry about them when I’m at work. What if they’re moved? What if I can’t find them on Friday before I need to depart?

I’ve got my headphones and reading materials. And a phone charger, and a battery pack, and another battery pack just in case the battery pack and charger don’t work. (I have a drawer in my desk with AT LEAST 10 or 11 battery packs I’ve bought over the years)  “if My phone dies I’ll have no music, I’ll have to listen to all the voices on the train, I’ll have a meltdown…” (this is my thought process btw) .. “best take a third battery pack just in case!”

Ok I’m going for the weekend. Off on Friday and back following Monday. I’d best pack a weeks worth of clothes. Well you never know what might happen! But I don’t know what I’ll be doing!! ok so I’d best pack jeans AND a pair of smart trousers, oh and a couple of smarter shirts, and a jumper. Is it going to be hot or cold? Best pack another jumper and a few light summer shirts. Wet or dry? Best pack my waterproof AND my light summer jacket.

Oh dear! My rucksack is getting full and heavy now. Should I take a suitcase instead? but if I take a suitcase I’ll need to stow it in the racks away from my seat. I’ll need to keep watching it to ensure it’s still there. And if I take a suitcase how will I access my chargers etc? I’d best take a suitcase AND my rucksack for stuff I need with me.

Oh dear! how am I going to get across London carrying all this? It’s going to take me longer than I planned… I’d best plan to leave a bit earlier on Friday.

This is me fretting about everything that could go wrong about the journey. Lets not forget about the parental visit itself. No safe quiet space for me. None of my own belongings around me, parents constantly wanting to chat (they don’t yet know about my DX. I’ve never found the right moment to tell them) so it’s going to be emotional overload all weekend.

And then, of course, Next Monday.. I have to do the journey in reverse. Getting back to my London home late Monday night nice and refreshed for work the next morning.. erm?

Everything is Awesome..

No. Far from it. There’s too much hatred in the world, too much bitterness, too much “us and them”. It sometimes feels that the world is a toxic environment covered with stinking quagmires and clouds of noxious gasses. It’s too easy to fall into the trap of thinking everyone you meet is “out to get you” or only looking out for their own interests.

No, I refute this. Constantly assuming the worst isn’t healthy. I’m not a religious person by any stretch of the imagination (I used to be.. but that’s a WHOLE different story) but I must have faith (for want of a better word) that Good (for want of a better word) will prevail over Evil (for want of.. well..you get the picture!)

I like people. Genuinely, I like people. I get odd looks from commuters as I randomly smile at people. A wise old face, a happy child, a loving couple, a unique individual can often find themselves victim of a drive by smiling by this crazy old fool.

I have a particularly odd outlook on life. A personal philosophy I fashioned over many years of feeling different. It occurred to me that we are ALL different which in turn makes us ALL the same. I mean we are all unique and it is this collective uniqueness that binds us all together.

My philosophy is one fashioned from questionable physics and crude mathematics 😉 When you look at the universe from creation to now there have been numerous points where something specific had to happen to end up where we are right now (you.. sitting there.. reading this!) The right atoms had to clump together to form the galaxy, the right lumps of matter had to form to create the protoplasmic Earth. The right planetoid had to crash into Earth to knock it off kilter and give us our moon.  The right meteors and comets had to bombard the planet with the right chemicals to form the basis of life. That life had to survive many extinction level events to evolve. The right fish, the right reptile, the right mammal, the right ape then think to the more recent history. Your great-great-great-great.. .. .. great grandparents had to meet from all the people they could  have met, the right sperm had to meet the right egg at the right time, again and again and again and again down the generations until eventually, you. You right there.. was born. Mathematically speaking the odds of these specific things happening are astronomical. Ok obviously they HAD to happen otherwise we wouldn’t be here. But when you look at it from this perspective you are statistically impossible. The odds of you existing are stacked against you, yet despite the odds here you are. You are as close to a miracle as this mathematician sceptic aspie is ever going to see. And you know what else? So am I ! And your friends, your co-workers, that guy you pass on the street, the annoying politician who everyone laughs at.

We have to realise that we are the greatest treasure this universe will ever have (at least on this unremarkable blue-green planet in the unfashionable end of the western spiral arm of the Galaxy) We have to realise that once we’re gone.. We’re gone. Never was there anyone like us before, never will there be anyone like us again. We are irreplaceable and totally unique. And in the grand scheme of things we are mayflies. We flare and burn and go out so very very quickly. Which makes every second a precious gift, every minute a fortune. Not to be wasted, not to be squandered on causing pain or discomfort, but riches to be spent telling others how wonderful they are. Helping the weak, the infirm, the frail and speaking up for those with no voices of their own, shouting down those who will seek to silence others for personal gain.

We must be proud of our differences. We must stand shoulder to shoulder and spend our time riches wisely. We are wonderful. We are beautiful.

I’m reminded of a quote from the movie V for Vendetta. Where a letter from a long departed inmate called Valerie is found and read. The last part sums up my sentiment exactly.

“What I hope most of all is that you understand what I mean when I tell you that even though I do not know you, and even though I may not meet you, laugh with you, cry with you, or kiss you: I love you.

With all my heart

I love you”

Why I feel people hate me before they’ve ever seen me!

One word. “Atypical”

Netflix’s latest offering is a “Dark comedy” about a young 18-year-old male growing up on the Autism Spectrum and trying to get a girlfriend.

Ok.. sounds familiar (well apart from the elephant in the room that is the fact I wasn’t diagnosed Autistic until I was 46) “perhaps this could be interesting” Thinks Me.

Oh boy.. So much hatred on social media for this show. Calls to boycott it, tweet upon tweet upon tweet about how they didn’t hire an actual autist for the role, about how he’s white, about how he’s straight, about how he’s Cisgender, about how he’s a he! I’ve seen posts about “Toxic Masculinity” dear god an 18-year-old boy imagining having sex? How very dare they.

Ok, look. Sure, they could have hired an actual autist for the role. I’m not a huge fan of The Big Bang theory. People say Sheldon Cooper is “an example of someone on the spectrum” I disagree.. I think he’s an example of someone who’s an a**hole! I associate more with Leonard or Raj than any other character. My wife says I’m like Moss from The I.T. Crowd (the original British version I hurry to state!) Yes I can see that. Naïve, intelligent, awkward, loyal and at times as dim-witted as two short planks stacked together. Sums me up that does! Played perfectly by the talented Richard Ayoade I really see a lot of myself in Moss (except I don’t live with my mum any longer and actually have a social life .. of sorts) When I heard there was a show where the “hero” was autistic, not implied but actually written as autistic, I was glad. I was looking forward to the show. Then I saw the vitriol being targeted towards it.

Don’t misunderstand me, I understand where they are all coming from.  I see your points and, in part, I agree with them.  But let’s just step back for a second. Take a look as someone who *IS* a white straight cisgender male on the autistic spectrum. (heck worse than that.. I’m middle aged AND middle class) When I see people saying how they’re not interested in seeing “toxic male cisgendered straight guys with all their ill-gotten privileges” I feel like they’re saying “Pete? I don’t like who you are.. I don’t like what you are and I don’t think anyone needs to hear anything you have to say. Please delete your twitter and blog immediately!

Intellectually I KNOW they’re not personally attacking me. But my aspie side find it hard to separate the words from the meaning. When I was 18 I wanted nothing more than a girlfriend. I was “lucky” I had a high school girlfriend. We’d hold hands. I was 18… other boys my age were bragging about their conquests. I didn’t want that. I was happy holding hands. I got a peck on the cheek once; I still remember that nearly 30 years later.  I had my first “proper” girlfriend when I was in my very late 20’s/early 30’s . Which is why I can’t watch the comedy “The 40 year old virgin” .. I wasn’t quite that bad but, really, not far off and it’s not really a fun nor funny experience. I wasn’t preoccupied with sex, I’d rather have someone to cuddle and chat with. (I love cuddles)

Ok, So Atypical isn’t ideal. Surely an autistic hero is better than a NT hero? Even if he is being played by an NT actor? (I grew up in the Sean Connery/Roger Moore Bond era. How’s that for an unrealistic view of toxic masculinity and overly sexed NT heroes?)  I was looking forward to having ONE fictional character I could call my own. One like me. Not identical, not a carbon copy, but someone with SOMETHING in common.

And now I feel that I should be ashamed of who I am, Curse me for being born male, damn me for being born white and a hex on my head for being straight! I cannot help these things, this is who I am. Warts and all. I do my best to acknowledge my privileges and do my best to signal boost, promote and support others of all groups. So why do I feel hated?

This whole Atypical thing is making me very low. I’m sinking into a deep funk. So much so I’ve recently blocked any tweets mentioning it, I’m not going to watch the show, I’m also not going to listen to anyone telling me I’m not entitled to my say.

I’m feeling truly lost.

Aspie without a Spoon!

I only realised that I was on the spectrum late last year but I have friends who have had various debilitating conditions both mental and physical and, as such, was introduced to the “Spoon Theory”. Gradually phrases entered my lexicon “out of spoons” “Me and my fellow spoonies” etc and I never really questioned it. I never really understood it either but it wasn’t for me to question someone else’s world view.

Then I got diagnosed autistic. Ok, no biggie. I’m still me! I’ve not changed overnight! I’m still the same old weird nerdy guy with his encyclopaedic knowledge of movies, an interest in word play and a penchant for math puzzles and Rubik cubes. I hadn’t been swapped for a shape shifting replicant from the planet Autismia! However, suddenly friends and colleagues who knew suddenly kept “giving me spoons” (not LITERALLY you understand) I’d have a bad day and a friend would say to me “Aw you out of spoons?” .. I’d have a meltdown and I’d be offered a break to “Regather my spoons” Spoons, spoons, spoons – they followed me everywhere.

Now, don’t get me wrong, I’m not “dissing” spoon theory. I understand where it comes from. From Wikipedia

The spoon theory is a disability metaphor used to explain the reduced amount of energy available for activities of daily living and productive tasks that may result from disability or chronic illness. Spoons are a tangible unit of measurement used to track how much energy a person has throughout a given day.

Ok. I get that! It’s an arbitrary unit of measurement. Could be spoons, buttons, paper clips or bananas! I’m a mathematician. I’m used to arbitrary symbols representing numbers.

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Euler’s identity anyone?

 

But to me, spoons made no sense. As a single home owner 15 years ago I had to buy all the mod cons for my new apartment. I bought cutlery. Never once did I feel depressed or worn down because all my knives, forks or spoons were in the dishwasher! If I ran out of spoons I washed some up.

I couldn’t get my head around the spoon analogy.

Then, a couple of days ago someone mentioned on twitter that they couldn’t get the spoons thing either. To them it was Jenga blocks. You have a tall stable tower of Jenga blocks. Everything takes a block away. Dentist visit? Remove a block! Meeting at work? Remove a block! Problem with the plumbing? Remove 3 blocks!! Over the course of a day the tower gets more and more precarious, full of holes and unstable. Eventually you have something that removes that last crucial block. It might be something mundane, like the sandwich shop running out of Tuna and sweetcorn mayo filling. Suddenly your entire tower comes crashing down.

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Link to the original tweet that inspired this post.

I’ve never crashed into a heap over running out of spoons, but a tower of bricks falling into a chaotic heap because of a small thing happening is a much more appropriate analogy for me.

By all means, keep your spoons, forks, paper clips, pencils, umbrellas, coins, batteries, unicorn dust or Midi-chlorians. Whatever works for you! It’s all good.

For me, I’m all about the Jenga!

Now if you excuse me, I’ve got a tower to rebuild.

Jenga_distorted

 

Cleanliness is next to Aspieness..

Dirt, Mess..

I hate it. No really. Ever since I was a young child I’ve had problems with “dirt” . Dirt in this context can be ANYTHING from mud, paint, blood or even something like dough or flour !

As a child I remember the circus coming to town. I bugged my mum and dad for weeks to take me and in the end they relented and took me to the circus. Standing outside the big top I was getting excited to see all the wondrous things inside.. until that was I saw what was happening at the ticket office. The “ticket” was actually an ink stamp on the back of the hand. Suddenly, I didn’t want to go in. I remember the anger of my parents after me begging to go for ages suddenly changing my mind last-minute. of course, back then I didn’t know I was on the spectrum so I had no “excuse” i just didn’t want to go in. I remember saying something about seeing something inside I didn’t like. I didn’t want to admit to not wanting to go in because of a silly ink stamp.

I developed a habit of washing my hands. Wash hands before you touch something, wash hands after you touch something, wash your hands before you wash your hands. It spiralled out of control. Before I realised it I had a problem. I was washing my hands constantly.  My hands were cracked and dry, I’d carry a bottle of alcohol hand sanitiser around with me and apply it constantly. My fingers would crack and bleed and therefore make my hands “dirty” again. I’d wash some more.

Now I’m 47, I’ve mostly got over this strange aversion. Don’t get me wrong. I still dislike getting messy but now I tolerate it better. My wife loves me to make bread (something I’m surprisingly good at apparently!) Every time I add the liquid to the flour and yeast and get my hands in there to mix it I wince. As soon as the dough is kneaded and rising I HAVE to wash my hands. I can tolerate it for as long as it’s necessary but not a moment longer. My cooking apron has towelling inserts on the side for wiping. After I’ve baked I swear you could bake my apron and get a 2nd bread/cake out of it XD

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My aversion to getting “mess” on me has some very odd spin-offs. I’m .. hmm.. I won’t say Frightened, but I’m certainly uncomfortable around tattoos ! The idea of getting ink on you that you can NEVER wash off fills me with dread. The idea of me getting a tattoo is bad enough but for some odd reason if there’s someone with tattoos near me I really don’t want to go near them, I CERTAINLY don’t want to touch them. I know logically and intellectually that the tattoo can’t jump off their skin onto mine, but there’s that strange childhood dread of getting dirty screaming in the back of my mind. It’s really illogical and I feel silly for saying it. I know some very nice decent people with many many tattoos on their person. I love them dearly.. but still there’s that slight revulsion attached to the friendship I feel deeply ashamed and embarrassed about.

My old OCD tendencies are gone for the most part. My hands have healed although now I suffer from eczema/dermatitis no doubt brought on by the years of me mistreating my hands. I have this strange repulsion to getting paint on me.. I’ve painted the house many times, but it takes me about 50% longer than it should on account of the number of times I have to go wash my hands.

I still don’t like clubs/events where I need to get a hand stamp. And as for the circus? Well, I did eventually get to one only to realise I was afraid of the clowns. No, not for the usual reasons.. all that face paint you see.. .. .. .. 😉

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