Living with Autism

There was a Horizon documentary on Autism on this week on BBC 2. Available to some via iPlayer here. If you haven’t watched it then take a look.

There were lots of positives to take away from it:

  • It showed footage of an awesome curved wall that kids were propelling Matchbox cars up (did this in my garden with plywood and sand when I was a kid).
  • It highlighted how the different way that we see things and think about things can allow us to do things that neurotypical people can’t.
  • It described the difference between functional communication and conversation. And introduced people to concepts of masking and mimicry.
  • It dispelled the myth that autistic people lack empathy (authors note: yes dude, even though the Wikipedia page on Asperger’s still suggests this).

There was one thing that left me quite cross though. The suggestion that a diagnosis is/should be withheld unless it is “clinically significant”.

I have two big problems with this:

  • If the diagnosis/label is only applied to people who are struggling, people who need help (hence making it clinically significant) then you deprive the world of some positive stories of people with autism. This would seem a great way to underline the stigma attached to the diagnosis.
  • I just don’t think it is fair for someone else to make the decision over whether the diagnosis is significant. I know first hand the impact this can have.

In the experiment with the boat in the box, why did the neurotypical people copy the knocking on the box? That’s a genuine question. I didn’t understand, which I guess makes sense considering I am autistic.

I leave you with the words of Kenny, “I see things in a different way… I think about things in a different way.”

I reserve my right to feel uncomfortable

Louis Theroux tweeted a link to this story over the past weekend. It’s an adaption of a book written by the Father of an autistic person that covers the diagnosis and life afterwards. It is a happy story. Owen, the autistic person, is clearly content and is obviously very loved. I like the way the story captures some of the journey that the family experienced, but bits of the language used troubled me.

“Thank God, he’s in there.”

“Owen reached out, if only for a moment, from his shut-in world.”

I could not shift a single thought from my mind, “Why is your way, the right way?”, which is probably more accurately expressed as “Why are the things we do considered bad just because they are different?”

Having to hide my stims makes my day harder. Having to mimic your behaviour makes me tired. #StopCombatingMe. Just let me be.

I reserve my right to feel uncomfortable, reserve my right to be afraid.
I make mistakes and I am humbled every step of the way.
I want to be a better person. I wanna know the master plan.
Cast your stones, cast your judgement, you don’t make me who I am.

Sometimes You’re The Hammer, Sometimes You’re The Nail; Common Courtesy; A Day To Remember

Think outside the boxes

I have a bunch of posts that I will probably never publish. Not because I think they aren’t good enough or because they are too private to share, but because they touch on subjects that are like grenades. I have tried to discuss them before and it just turns into a huge mess. I am totally aware that I am not the best at explaining non-scientific type things to people, I guess this comes into it. Anyway, it’s been eating away at me that the number of posts in this category is growing.

I consume a tonne of information, lots in the way of blogs and from a real cross section of society. Some of those posts make me feel uncomfortable, they force me to think about things, to expand my horizons. I think this is a good thing. I like challenging myself in this way.

For the most part I have found that, through twitter, I have had some really amazing, eye opening discussions with people from totally different walks of life. Whether we agreed or disagreed, both sides were heard, debated in a passionate manner. I have also had the misfortune to stray into conversations I have almost immediately regretted. I say conversation, I mean monologues, where only one side is heard in a way that prevents any learning, growing or sharing of opinions.

My point is this, before you decide where in the Venn diagram of life I belong, before you sweep me up in your mass generalisations, before you dismiss me entirely, just take a second and consider whether building bridges is a better choice than building walls.

Labels

One of the best things about the extreme research phase of determining that I was autistic was discovering that there were words for things. Things I thought, felt and experienced, but which previously nobody ever seemed to talk about, or understand.

For a long while though, I have had something on my mind. Labels. People get super upset by them, especially in the autism community. I’m kind of sick of being told what words I should use to describe myself.

I hate functioning labels, i.e. high functioning or low functioning. I think they represent a polarising oversimplification that is at the heart of this issue. Stick with me though as I have to use them to explain this next bit.

I feel trapped between two groups:

  1. Those who think that people with Aspergers are too high functioning to be described as autistic.
  2. Those who strongly reject the term aspie and instead favour autistic.

In my experience, those two groups are mainly made up from:

  1. The parents of low functioning autistic people.
  2. People with an autism diagnosis who would be described as high functioning by the people in group one.

I’ll be honest and say that I have little sympathy for the people in group one. High functioning and mild autism are easy things to say from the outside.

My point though, is that if you tell me which labels you prefer for you, then I will try and remember to use them and I would hope you would do the same for me.

Asperger’s Syndrome. Whilst this is my official diagnosis, it somehow always feels scary. I think it’s the “Syndrome” part which does it. I tend to say “I have Aspergers”, but “I am autistic”. I also describe myself as an “aspie”.

“Person with autism”, that shit is just a mouthful. To me, it is so clumsy and obviously tiptoeing around in a way that totally defeats the purpose, I don’t ever say it.

I am autistic, I am an aspie, I have Aspergers Syndrome. To me, these things are all true. So suck it up, buttercup!

Today I disclosed to my colleagues

Today I disclosed the fact that I have Asperger’s to my colleagues. Here is a slightly edited version of the email I sent them. The only reason for the editing is to protect the identities of my colleagues and just to make sure I don’t get in trouble for sharing anything related to my job.

I am autistic
Some of you already know, and for some of you this is new, but I am autistic. More specifically, I was diagnosed with Aspergers Syndrome a couple of years ago.

What, like Rain Main?
No, not like Rain Main. In general, that film is considered by autistic people to be almost entirely misleading. (The Keifer Sutherland TV show where the autistic kid can see in to the future isn’t very realistic either.) We are all different. Autism is a spectrum condition. Sheldon Cooper (Big Bang Theory) is probably the best example of an autistic person with an Aspergers diagnosis on TV; use him as your reference point for me.

But you seem normal. Are you sure you’re autistic?
Erm… thanks? I am definitely autistic though. The diagnostic process is lengthy and involves an entire panel of psychiatrists. No offence, but I really wouldn’t want to be neurotypical.

My sister’s friend’s nephew’s cat is autistic, but you’re not like him?
If you have met one person with autism then you have met one person with autism. We are all different. It is a spectrum.

Aren’t we all a bit autistic?
No. There is a massive difference between being shy, anxious, generally socially awkward and being autistic.

So what is it?
Autism is a neurological developmental difference. Simply put, my brain is different to your brain. If we were given the same task to complete and were subject to brain scans throughout, you would see that we were using totally different parts of our brains and were tackling the task in entirely different ways. As a result I am better tuned to some tasks than you are and vice versa. I test off the scale for some things and way below average for others.

What does this mean?
I can solve a Rubik’s cube with ease, but I cannot carry a tray of drinks**.

No seriously, what does it mean?
In a working sense, it significantly impacts me in two ways. Firstly, I have trouble communicating. Conversing requires conscious effort on my part; I think in pictures, and then have to translate them in to words. I interpret words literally. Extended periods of communication/interaction makes me tired. As you know, the majority of communication is not directly in the words exchanged, but in tone, body language, facial expression, etc.: I only get the words, and the rest of it misses me almost completely. Consequently, I ask lots of questions and attempt to get concrete, black and white answers in an attempt to fill in the blanks. I am aware that sometimes this could feel like an interrogation, but I do my best not to have this happen. Please be patient with me if I am asking lots of questions, it is likely only because the information you are giving me does not balance in my head. Conversely, I am normally just giving you words and not broadcasting any of the other stuff. I am almost incapable of anticipating your response, sugar coating information, or lying. If you ask me for my opinion, you are going to get my 100% honest and unreserved opinion and moreover I am going to be surprised when you don’t like it.

Secondly, I have what I can only describe as super senses. All of my senses are turned way up to 11. My brain does not focus on an individual stimulus, but instead attempts to process all inputs simultaneously, in real time. In an environment like an office this can be exhausting. Heads up: I can only assume that strip lights were designed by Satan himself. The combination of buzzing and flickering is torturous for me and this is why there is a sign on the light switch at the front of the building and why I get cross if people don’t follow the instructions on it. My dark corner and my headphones are not just whims – they enable me to do my job.

Is there an upside?
Yes there is. I think in pictures and this means I can organise and process huge amounts of information in my head extremely rapidly. My eye for detail is well honed. I can hyper focus on a task for extended periods of time. Perseverance is a common trait right across the autism spectrum. My brain catalogues *everything*. I can replay conversations in my head like videos. Heads up: this means that if you promise me something or agree to something, I am not going to forget and I am going to hold you to it without exception. Likewise, I know exactly what I have promised or agreed to. No amount of spin will save you. My default response in these situations is to request “Permission to treat as a hostile witness?” from <person>.

Aspergers wasn’t a thing when I was a kid.
And at one point people thought mercury was a cure for pretty much everything, Heroin was a reasonable cough medicine, lobotomy was a reasonable solution to depression and that trepanation was a sensible cure for migraines. Things move on.

I’m talking to you, why aren’t you concentrating on me?
I am concentrating on you. If I am looking around the room, playing with something in my hands, or shifting around then I am concentrating on you. If you force me to sit in silence, hands empty and then stare at me, I will drop my shutters. “Normal” eye contact requires a level of trust only those closest to me can achieve. If I shift my gaze from you when talking, I am not lying to you – I’m just trying to prevent you from locking on to me with your optical probes and scanning the depths of my soul – yes, this is really how it feels for me.

Is this why your desk is so tidy?
Yes. My desk is intentionally spartan and I need it this way to in order to work efficiently. I prefer to do things at my desk rather than yours because I realise you are unlikely to want me to tidy your desk before answering your question or helping you. Most people are okay with this and <person> has even learned to use the guest coaster (no really, there is a guest coaster) without needing to be reminded.

Is this why you leave the same time every day?
Yes. My routine is extremely important to me. I realise that you can’t fully understand why, but if you mess with my routine then my world begins to crumble around me.

Why are you telling us now?
Probably not for the reason you think. My reason for not telling you up until this point is that it isn’t really anyone’s business and I felt I was doing an okay job of masking it. I have had almost 30 years of practise at pretending to be like you. I can more or less keep the illusion going during the working day, but this takes a massive amount of effort on my part and leaves me exhausted. Currently, I am running a spoon* deficit and I am simply unable to maintain the facade. Since the reason for the deficit isn’t going anywhere anytime soon, I am unlikely to be able to rectify the situation and rather than be judged unfairly for my behaviour, I thought it was better to explain.

Have I told you everything?
No. I have intentionally only told you as much as I think you need to know.

Do I want to talk about it?
Not really. Unless you are one of the people who already knew because I told you, I am really not comfortable discussing this verbally. I am sure some of you have questions: Google is not your friend! There is a huge amount of misinformation available on autism on the internet. If you have a question, email it to me and I will try my best to answer it. If you would feel more comfortable raising your question to <person> then this is also an option.

Do you “Light it up blue!”?
Ugh! You have found the Autism Speaks website. Please do not talk to me about cures or eugenics, I will become extremely annoyed, [metaphorically] turn green and Hulk smash my way out of the conversation.

* Spoon Theory

** This is actually true.

The calm after the storm

I made my decision. I’m going to disclose and I am happy about it.

In the end, this ended up being a really easy decision. My logic is simple; how can I expect people to learn or know about autism, in all of its forms, if I am unwilling to raise my hand and say “Hey, I’m an aspie. I don’t bite.”.

I spent a long time writing and re-writing some words (thank you to the people who reviewed them) that I intend to email to my colleagues in the new year. It feels like a positive step. I realise I have lots of hard work ahead of me if I am to find a way to cope with my work commitments, but I am ready to fight and ultimately I would much rather fight and lose, than give in and always wonder “What if?”.

I have lots of people around me at work who are being extremely supportive and also some who I think are quite protective. I’m good with that. The project I am working on has been something like trench warfare: nobody will be the same afterwards, bonds have been formed.

I have training booked for myself in the summer and there is commitment from my employer to seek training so that they better understand me. I can’t really ask for more from them than to try.

A wise man once said: You have two options, give in, or go harder and faster. Time to Hulk up!

For now though, I shall recharge my batteries over Christmas, disclose to my colleagues and then I am off to enjoy some winter sun with my bro. Time to make lists of things to pack!

The week that was…

This week has been really rough.

I have been operating beyond my capacity at work for an exceptionally long time. This is due in part to the ridiculous demands placed on me by the current project I am working on. The result is that I am starting most days without any spoons and my ability to behave “normally” is severely impaired. I end a regular working day exhausted; at the moment I am struggling to avoid melting or just shutting down completely during the course of the working day. This hasn’t gone unnoticed by my colleagues and lets just say that it has made things difficult.

My employer has suggested I could make things easier on myself by disclosing the fact that I am autistic to everyone in the company; currently, only a few trusted people and the people I interact with directly know about my diagnosis.

Whilst I am making an effort to protect myself more, my employer is ultimately unlikely, unable or unwilling to rectify the causes of the issues for the foreseeable future. My mask is slipping and people are making unfair judgements of my behaviour based on neurotypical standards.

I realise that I can’t put the genie back in the bottle once it is out. My fear is that once people know, it will be used against me. Look around in the media, people aren’t generally that accepting of neurodiversity.

I need your help guys! Do I disclose to my colleagues, or do I just try and ride it out?

The customer is sometimes a douche nozzle

The changes in recent years in the way in which software is distributed and sold have heralded some great things. People have genuinely never had it so good. It is easier than ever before for people to source legal copies of well maintained apps for their mobile devices and/or computers.

Software doesn’t grow on trees though. It takes time to develop; to design, code, test, release and market. It takes more time and effort to maintain; fixing bugs, adding new features.

The point of this post is to highlight the bullshit sense of entitlement that seems to have developed alongside the app stores.

You paid ‘x’ amount a year ago for the app and you don’t think the changes in the new version justify the price? Cool beans, don’t buy it. Stick with the version you have. Even when an app is declared feature complete, it is rarely pulled off the shelves. Even if the developers move on to the next major version, they will normally still offer bug fixes for the previous versions. Even if they don’t, the software doesn’t suddenly stop working when a new version comes out.

And if you ever find yourself saying “All they’ve changed is the way it looks!?”, please slap yourself. In the face. With a shovel.

Political Apathy 10: Same fail, different day

Way back at the beginning of 2010 I blogged about how I am often reminded of how out of touch the ‘major’ parties are whenever they do/say/announce something. Back then my post was inspired by a Labour leaflet telling me how voting Green would let the Tories steal the seat and how this was clearly wrong and had served only to strengthen my resolve to vote Green.

Fast forward to the tail end of 2013; we have a Green MP, a new Labour candidate for the seat of Brighton Pavilion and are probably about eighteen months out from a General Election. So when a leaflet came through the door from the new candidate, Purna Sen, I was interested to read it. Since Labour clearly can no longer suggest that a Green MP is impossible and that voting for one will result in a Conservative MP, they have instead decided to attempt to convince constituents that it is Labour who do the real work on green issues. Yep, that is genuinely the jist of the message.

I’m super happy with my Green MP thanks. I don’t agree with Caroline Lucas on everything but I think she is a top notch person who has absolutely represented me in line with the platform on which she was elected. I follow her progress closely to see what votes she attends (and how she votes), what questions/issues she raises during debates. Quite frankly, if 20mph speed limits and a ridiculous bus lane is the worst thing I have to put up with as a result of Green policies then I think I am doing okay. If I have an MP who I can rely on to speak up for animal welfare, equality, non nuclear proliferation, civil liberties and against ATOS, the badger cull, fracking, page 3 and Darth Cameron and the rest of the Empire in general, then I am on to a winner.

Sleep

I love my bed. It is my sanctuary at the end of each day.

I have two identical sets of bedding. No surprises. No need to even think about which bedding is on. Neutral colours, nothing that will stimulate my brain. I find it incredibly hard to switch off at the end of each day and get to sleep, stimulation is the last thing I need.

My sheets are fitted. Always pulled tight. Hospital corners. Flat. Nothing that will feel different. Everything is cotton and soft. The duvet covers have a pattern of lines on them. I can pull them square this way.

My pillows are always pulled tight and aligned to the middle of the bed. The ends point out.

My mattress is hard memory foam. It stays nice and square. There really isn’t a lot of give.

I need all of this if I am to sleep. Change it and I will get very anxious. Agitated. Upset. Same as if I get home and there is stuff on my bed. I don’t like stuff on my bed.

This is my space. It is one of the places where I indulge my aspieness completely. I love it.

I put my headphones on and fade into the music.