Working Works

When I was young I observed that nine out of ten things I did were failures, so I did ten times more work.

George Bernard Shaw

 After well over a year of trying to find a part-time job that will fit around my university course I have now found one, at last!

This will be a very interesting experience for me because it will be the first job I have had where I will be disclosing my diagnosis of Asperger Syndrome. I don’t normally find it too difficult to disclose to people I haven’t met before, however I did know a couple of my co-workers when I was at school, so how they may react to my disclosure could be quite interesting as well. What I sometimes think of as a downside to a disclosure of an autistic spectrum condition is how to do it without focusing solely on what I can’t do or what I find difficult. I don’t want an employer to think that I’m a charity case to whom they are doing a big favour. I have given the go-ahead for my managers to share my disclosure with the staff, which I felt was best as, “Hello, I’m the new bloke, and I have an invisible condition/disability that might make me a bit strange to work with.” I feel, wouldn’t be the best of introductions.

It’s easy to be flippant about it all, but there were some very complex emotions going on when I started work. Firstly there was the sheer dread of having to meet lots of new people. When I didn’t know I had Asperger Syndrome, I had an excuse to get things wrong, now I am aware of how it affects me, and I have a responsibility to make sure I’m not too quiet, rude or pedantic. It’s not that I enjoyed being awkward to interact with before it’s just that a lot of the time interacting with people can be incredibly uncomfortable and tiring for me. That’s why I got a job in a kitchen, instead of facing the unpredictable public. I can rely on a jacket potato to just be brown and lumpy without try to second guess what it might do next.

I also have to fight off worries that this job will be like my last, where more and more pressure was put on me to the point where a part-time weekend job became a major burden. I feel that there might be a tendancy for people with ASCs to use memory to fill in the social imagination gaps when doing something new. Where there is a lot of uncertainty about a new job – or any other new experience – what comes naturally is to use data we already have and if that’s bad data from an unpleasant experience it can lead to a lot of anxiety. For example, my previous manager was always trying to get me to work more hours – maybe she thought it was a favour because of the extra money – to the point where  I am now quite worried about my hours at my new job.

But there were good feelings too…

There are people out there who are willing to trust me. Ever since I was diagnosed I felt like I couldn’t be trusted with responsibility. I felt that if people knew I had Asperger Syndrome they would expect less of me, even for a job in a kitchen. But now I have been through a successful application where my employer had plenty of chances to say they didn’t want me they decided that I was exactly the person they were looking for. I’ll admit that requirements for kitchen staff are reasonably low as it’s hardly Wall Street, but at interview they got a flavour of who I am as a person and they decided they wanted all three courses. (That’s right, it’s a food joke because it’s a kitchen job – groan all you like) It’s good to feel more independent and to boost my opportunities to socialize with younger people as most of my colleagues are younger than me.

Most importantly of all, I have proved to my parents that I do want to work, and not stay at home where it’s safer away from human contact, and I have and will continue to prove to myself what I can achieve as a person with Asperger Syndrome. I must keep remembering that I am a person with a condition, not the other way around.

“I Will Change It!”

The stereotype of people with autistic spectrum disorders is that they don’t like change. Whilst this is true for some – including me – it often depends on which kind of change.

The green spaghetti man is from 1979 Doctor Who story City of Death. Scaroth is the last of his species the Jagaroth because unlucky chap accidentally blew himself up and the rest of his race. He only survived by being splintered through time, living multiple lives throughout human history.

The story is driven by Scaroth’s attempts to build a time machine to go back millions of years to change what he did so that his people survive. The twist is that the explosion that killed him started all life on earth, so the human race will perish if the Jagaroth don’t. This is the kind of moral dilemma that makes me love Doctor Who.

Watching it again recently I realized that sometime I feel like Scaroth, and not just in the having autism is like being from another planet way either. Ever since I was diagnosed with Asperger syndrome about 14 months ago I have wanted to go back and change myself so that I didn’t have the condition. It may be true that my higher-than-average intelligence; my honesty and my diligent attention to detail are likely to stem from it, but I still felt like I did. I would have traded those traits to spend weekends with friends, to have a girlfriend and to be generally more outgoing. It seemed to me that being clever and thoughtful didn’t amount to much if I was never close enough to anyone to share those qualities with.

However, thanks to some incredible people who have supported me such as my local Autism Advice service, my mentor at uni and my job coach I have learned to be more proud of myself. They have shown me that some people long to have the kind of gifts that I’ve been given, It’s just that because I’ve lived a life that is quite distanced from others I haven’t realized that other people can’t remember that Charles Dickens died in 1870; that Queen Victoria loved curries or what a dactylic trimeter is. Most of all they have show me that there are people out there who find it interesting! I just thought that my family’s disinterest in these things represented the population at large.

But does this mean that I shouldn’t change myself? No it doesn’t. William Blake once wrote that ‘The man who never alters his opinion is like standing water, & breeds reptiles of the mind.’ I have always been a firm believer in keeping as open a mind as I can to different possibilities. Therefore if there are things about having Asperger Syndrome that I don’t like, I can’t change my having the condition, but I can change what I do about it. Like Scaroth I had one roll of the dice and won’t get another, but instead of lamenting the snakes (or chutes), I should rejoice at the ladders that will take me to the finish. For example, I have started a social discussion study group at my university. The focus in on our work, but I also had an ulterior motive in putting myself into some social interaction with my peers. All the time I am looking out for possible ways to interact and socialize with others, instead of think of reasons not to as I did before. The benefit we have now is that in the world of social media we can keep connected with others much more easily.

In the end Scaroth was brought back to earth (literally) by a punch from Duggan, the seemingly hapless detective. An incredibly complex plan that has taken many years and millions of Francs to formulate has been scuppered by a firm dose of reality. Whether that reality is that you can’t stand around soliloquising your evil plan and not expect to get punched, or that you can’t change having Asperger Syndrome they are quite similar. Both show that you need to be in touch with the real world, or the real world will get in touch with you when you least expect – and it’ll probably hurt.

“But, technically, he is correct.”

Being a lover of literature I should probably quote Shakespeare’s Polonius when giving an example of pedantry. However, this doesn’t help considering the stereotype of those with Asperger Syndrome being serious and pedantic. Then I remembered this: one of my favourite videos, because it shows pedantic thinking in a funny and entertaining way.

Some people may think of those with AS as enjoying correcting people on seemingly small and technical details. Although, speaking from the other side, this way of thinking often feels like a curse! It is usually involuntary and I can’t count the times when I’ve had to restrain myself because someone had said a double negative or written ‘there’, instead of ‘their’, or ‘they’re’ on Facebook. I am getting a lot better at realizing when I am about to let rip with a correction so I walk away, or change the subject quickly.

It must be to do with how my brain is wired. It is said that being a perfectionist is a common Asperger trait. I appreciate grey areas of discussion in topics such as the arts or politics – but where there seems to be an obvious right/wrong outcome to a decision I find getting things ‘right’ to be of prime importance. This doesn’t mean that I think that people who get things wrong are stupid, because getting things wrong is one of the best ways of learning new things. What used to make me really makes me seethe was people who don’t try to improve, and don’t care about making things right. For example, my way of thinking is: a job applicant that doesn’t care about using apostrophes or homophones correctly will always look less intelligent than one who does care and gets it right. Even if, in reality, they are the cleverer person they leave themselves open to prejudice, and therefore difficulties.

Nevertheless, even though I still don’t understand the happy-to-be-wrong people out there, I do understand that if they want to stay that way it’s okay. And I also have to remember that people may not see my suggestions in the way I intend them. To me it’s helpful guidance to make sure that they can improve themselves, (something which I am constantly trying to do myself) but to them it’s seen as a disparaging put-down. This leads me to a phrase I have often told myself since I was diagnosed: I can’t change how others react to what I do, but I CAN change what I do.

P.S. If you’re wondering – the Arsenal bit was a running joke on the Morcambe and Wise Show. It started off as a sketch where Eric, whilst in a quiz, would receive unsubtle hints from Ernie and the Arsenal question stuck.

If I Could Have Seen Me Now

“We all change. When you think about it, we’re all different people all through our lives. And that’s okay. That’s good. You gotta keep moving, so long as you remember all the people that you used to be. I will not forget one line of this. Not one day, I swear.”

(Matt Smith, Doctor Who)

It is now a year since I was diagnosed with moderate/severe Asperger Syndrome and in some ways my life has changed beyond recognition. I still vividly remember the night when I received my diagnosis. It was bitterly cold; the kind of cold that gets into your clothes.

 My parents came with me as they are best placed to answer questions about my formative years when I was too young to remember. The building was old and probably used to be an old nineteenth century mental asylum or a similar institution. It was a private mental health hospital and judging by the refined décor and very plush carpeting it showed. What was most telling about the building’s age was the ceiling’s ornate plaster cornice that ran parallel to the edges of the ceiling, as well as the highly detailed wrought iron balustrade that ran along the stairs to the waiting area. The steps were of that old type, too close together for my big feet.

 We didn’t have to wait for very long before the specialist psychiatrist beckoned us into his office. I was so surprised at the ardent certainty in his decision. My previous experience in these types of situations was my mother’s descriptions of me both as adult and child was, he told us, the most important information he needed, along with his own observations and tests of my social behaviour.

 Looking back I realize how afraid I was, which I didn’t know at the time. That night my thinking was that if I had Asperger Syndrome then something is wrong with me, or at least my brain. Although if I did not have the condition it would mean that my all of my past problems were totally caused by me and I wouldn’t know why. If I wasn’t diagnosed it meant that all the times that I’m lonely because I’m boring/annoying/too much of a smart arse etc. All of those times when I say things that seem okay to me but upsetting to others it would be because I’m stupid, or that deep down I’m a bad person.

 Immediately after the diagnosis I was mentally numb because of all the different things I was feeling. I felt relieved because it meant that my failure as a trainee teacher wasn’t all my fault. However, I also felt that I had let my parents down. They had just looked on as their only son was officially rubber stamped as defective, disabled, or just plain not normal. They were quite positive in their usual practical way of urging me to seek the help and support that having an official diagnosis can afford me.

 What has changed since then?

I am a lot more positive about having Asperger Syndrome. I try to strike a balance between emotional self flagellation and totally unabashed Aspie pride, as I find either counterproductive in interacting with the other 99% of the population.  Having the diagnosis has put me into contact with some wonderfully kind, interesting and supportive people, such as the people at my local NHS Autism Service and my job coach, all of whom I greatly enjoy spending time with.

Another way that the diagnosis has helped me is that it helped me to understand myself. Now I know that a lot better it has allowed me to be myself more readily, which has done wonders for confidence problems that I have been trying to tackle for several years.

Since 4^th March 2013 I:

• Go to the cinema more often (sometimes by myself, but that’s OK too!)
• Visit a local chess club to play with others
• Go to parties more often
• Regularly socialize with my university peers
• Play the ukulele
• Can Deal with my anxieties better
• Tailor most things to suit my Asperger brain
• Know my hobbies make me less, not more boring
• Am studying a course I can do and enjoy

I wonder how different I will be in another year’s time…

 

‘Life may change, but it may fly not;

Hope may vanish, but can die not;

Truth be veiled, but still it burneth;

Love repulsed, – but it returneth’

 (Percy Bysshe Shelly)

That Man From Gallifrey

“I hate good wizards in fairy tales; they always turn out to be him.”

A common trait amongst people with Asperger’s Syndrome (AS) is that they have an obsession. Mine is a TV show that started fifty years ago as a kid’s show made on the cheap.

Originally devised by Canadian Sydney Newman, produced by the Jewish, and even more unusual at the time, female Verity Lambert and directed by gay Indian director Waris Hussain, Doctor Who was already a mold breaker from day one. I could blog for several years on it, so I’ll focus on the main character: The Doctor.

The Doctor is my favourite fictional character. I first watched the show during the 1993 thirtieth anniversary repeat run on BBC Two as a four-year-old. It made an impression on me straight away. He’s a centuries old time travelling alien from outer space with two hearts, but I found myself drawn to him. I sometimes wonder if my love for the Doctor as a character is a kind of Asperger’s wish fulfilment.

The Doctor in a nutshell:  

• https://www.youtube.com/watch?v=837hexDplOI
• https://www.youtube.com/watch?v=jRSFwMqKIu8

Firstly there is the quite clichéd view of the person with AS as an alien from another world, which has some truth, although I think that is not very helpful in promoting AS confidence and self worth.  I can also appreciate what it is like to look human but not feel a part of humanity.

What I feel may be at the crux of the thing is how The Doctor marries intellect with social skills. All of my life thus far I have had an above average intelligence, (my psychiatrist’s words, not mine) but my social skills are quite slim indeed. This was particularly hard when trying to fit in with kids my own age at school. It would make sense for The Doctor to be my hero. He has endless brains, but makes friends with people wherever he goes, whether they are human, alien or robot dog. He doesn’t have to compromise his smarts to be charismatic and sociable with people, even complete strangers! And on top of all this he saves the day and never considers anyone as being too unimportant to help. He changes bodies, instead of dying, which could reassure someone with AS that change isn’t as scary as it sometimes seems.

These are all just ponderings. I am always quick to stress that AS doesn’t define my life; that it’s just a part of it. Millions of people who don’t have AS love Doctor Who and The Doctor, so this is just a theory. What I am sure of is that The Doctor can be a role model to all kinds of people. Even though he is a scientist he always appreciates the hidden power of everyday people and that it is important to go out there and meet them.

“As we learn about each other, so we learn about ourselves” 

(The Doctor, The Edge of Destruction, 1964)

Intoxication and a Strained Relation

I’ve had ups and downs this week. The good thing is that after turning down the opportunity several times I went for a drink with some of my peers and staff from the university after a department research seminar. This, in itself, had ups and downs because after finally putting myself into a situation where I can have a nice social chat with interesting and like-minded people I could hardly hold a conversation because everyone else was so loud and drunk. I was drinking too but I could only manage a couple because the beer was awful.

I came away with mixed emotions about the experience because I was pleased to have challenged myself, but annoyed because it was useless to try to talk to anyone as I either couldn’t hear them, or they were talking complete gibberish in their booze addled state. Part of me was also guilty because I felt a bit like I should have enjoyed it because everyone else seemed to. The best thing about it was that if I never go again it won’t be because I feel I cannot because of my Asperger’s, but because it’s just not my kind of scene. I think that is an important thing to consider when you have the condition. There has to be a balance between taking yourself out of your comfort zone and trying new things, but not in order to change who you are as a person. I’ll never be the life and soul of a party, but so are lots of people who don’t have Asperger’s. It depends on your personality, and Asperger’s isn’t a personality type any more than dyslexia or having blue eyes.

What’s brought me down was a conversation with my Dad where he asked me a very open question (some open questions I’m OK with) so I didn’t answer in the way he wanted, as I wasn’t quite sure what he was asking. I won’t bore you with the domestic details but in short he decided to abandon the conversation after talking to me like I’m mentally disabled. It all culminated with a rather vehement rhetorical question: “You’ve got a really serious problem, do you know that?!”. 

I said nothing after that. I was feeling such intense emotions so I just couldn’t react. I was hurt. I was being derided because of a mental difficulty I was born with. I was angry too – incensed – because it was like an insult because I was treated like a mental inferior. I’m much more intelligent than my dad. If he went to school for fifty years I would still be smarter than him, and there I was, being spoken to like an idiot. The most annoying thing is that he was at my diagnosis and was told that I need a small amount of clarification to answer big open questions because I don’t always get the gist. He was also told that even if I improve my social skills I won’t get it right 100% of the time. So he knows what my ‘serious problem’ is and how to get around it, so why didn’t he have more patience? It just goes to show that even when regular people are clued into what the condition is and how to deal with it they still just forget or don’t bother.

Feeling like trading with the other 99% of the population at the moment.

Sorry to vent a bit. 😉

 

Me and my Brain

I have decided to make 2014 the year that I move my social life up a gear. It’s not an official new year’s resolution, but I need to make some progress in the friend department. This won’t be easy because I’ve only just started getting a handle on what I think friends and friendship are.

Firstly I will seek out advice from local institutions on how to make friends and socialize with people. I’ve been making some progress with social stuff, like making sure I don’t talk too much and to not just answer but to ask questions as well. This way the person I’m talking to will have a chance to talk about themselves, which is good because it stops me talking about myself too much.

One of the biggest obstacles I come across is how social behaviour is not innate to me, but learned, or in my case not learned yet! It goes like this:

ME: “Right! I’m going to go to new places and make friends with people”

BRAIN: “Where are you going to go then?”

ME: “Uh… dunno. Isn’t it your job to think of that?”

BRAIN: “…”

ME: “Well, isn’t it?!”

BRAIN: “Sorry, I’ve got nothing.”

ME: “Okay, we can work around that, which people do we know that we could socialize and make friends with?”

BRAIN: “How about… um, what’s her name?”

ME: “Who?”

BRAIN: “You know, the one with blonde hair.”

ME: “You’re not really doing this very well either are you?”

BRAIN: “Charming. I’m the first one you turn to when an essay needs writing and this is how you talk to me?!”

And it goes on like that for quite a while.

In short, telling me to go out and make friends is like telling me to speak Swahili. It won’t happen overnight; firstly I need to find out more about what it is, where to go to learn and then how to do it. It frustrates my parents as they see my diagnosis with Asperger’s as pointless because it’s been almost a year and I still don’t have much of a social life. They don’t see the small victories that I am putting together, such as plucking up the courage to reach out to people on Facebook and by text to see if they want to go out and do stuff. They just don’t seem to understand how that’s a big deal for me.

I’m going to look for clubs and other places where I can meet and socialize with new people. Any tips/suggestions in the comments below would be greatly appreciated.

A Saturnalia Miracle

This is one of my favourite Christmas TV moments. According to the writers of The Big Bang Theory Sheldon doesn’t officially have autism, but he does show traits that are strongly associated with it. I myself find hugging people very awkward, so when I want to hug someone it is usually a very special occasion.

I first saw this before I was diagnosed with Asperger’s and I remember having a lot of understanding and sympathy for Sheldon. One of my friends on my teacher training course actually said they thought I was quite like him. That wasn’t the first warning sign to go unheeded!

Enjoy the holiday period and please spare a small thought for those with Autism and/or Asperger’s. The festive period can cause a lot of distress with a large increase in socializing and the disruption of daily routine. I know it’s hard to think about whilst – quite rightly – trying to enjoy yourself too.

I pray that you, and all those you love and care for have a happy and peaceful Christmas.

See you in the new Year!

– Shrugs, Not Hugs

Better Late Than Never

Singer Susan Boyle has been diagnosed at age fifty-two with Asperger’s Syndrome. In the UK press the second question after “What is Asperger’s Syndrome?” was “How and why did she go diagnosed for so long and is this common?”.

Yes, it is very common.

I find myself lucky that I got my Diagnosis earlier than her at twenty-three and as more adults seek a diagnosis the more common it will become. In this link from the UK newspaper The Guardian from 2005 by Paul Wady (the narrator from the video I posted yesterday), who tells us his story after being diagnosed with autism at the age of fourty-one: http://www.theguardian.com/society/2005/oct/01/health.lifeandhealth

Without a diagnosis many people like myself will have an unrealistic and distressing view of life. I put myself through the unutterable torment of trying to train as a teacher of 11-18 year olds because I didn’t know that, despite knowing my subject very well, I didn’t have the required social skills to manage a class of kids and get them to learn at the same time.

Many people go undiagnosed with Autism firstly because it is a unseen or invisible condition. Asperger’s Syndrome can be hard to notice because it only appears in certain contexts. Expert on the topic Tony Attwood says that it is impossible to diagnose someone with Asperger’s when they are on their own because then they act “normal”. So because many people with Asperger’s find the company of others hard to understand and therefore tiring it is instinctive to isolate themselves from others. This is their comfort zone because it requires no effort to socialize. So if they spend lots of time alone it is hard to get a diagnosis. It was never my idea to get a diagnosis, it was my mother’s, so if I was totally alone I probably wouldn’t be writing these words you’re (hopefully) reading.

The second reason why Asperger’s Syndrome gets left unchecked is that it is usually a standard-to-high functioning form of Autism. There can be a feeling that even if suspicions creep in they are shrugged off as the person can feel like they’re doing fine as they are and don’t need an assessment. I was like this. Even though I was being counselled for social phobia, low self-esteem, depression and crippling loneliness I was adamant that nothing was wrong that I couldn’t fix myself. Maybe it was my old fashioned British Dunkirk spirit. I was also afraid of getting a diagnosis because it seemed like officially confirming that I was a defective person, a broken toy.

“You think I’m mental do you?” was my first rhetorical response to my mother’s urgings to get assessed for Asperger’s. I won’t lie: before I learned about Autistic spectrum disorders I just thought that having Asperger’s or the like meant that you were some kind of weird nutbag. It made me think of images of padding every corner in the house and trips to the local zoo on a special bus with my fellow loons. After I was diagnosed I spent a large amount of time feeling very ashamed because it felt that I was an official nutter.

I must say that now I feel very different about the whole thing. Now that I’ve realized how untrue my thoughts were I jokingly call myself crazy all the time. I try to remember the advice given by the chap who diagnosed me: “Asperger’s doesn’t have a cure because it is not a mental illness”. It is a deviation from what is common, not normal. I have a blood group that only 2% of my country’s population has, but if that doesn’t make me feel like a freak, why should a diagnosis of Asperger’s? My eyesight has got a red-green colour deficiency, which is real hindrance in buying clothes sometimes, but I don’t spend time fretting over it and it should be the same with Asperger’s – you just find a way around it.

Having a diagnosis stops you from beating yourself up about getting things wrong that others seem to do so easily. Yesterday at a car park I saw that a woman had left her car lights on. Because it was such a spontaneous social interaction I couldn’t think of what to do quickly enough and, surely enough, she dashed off onto a bus before I could shout or catch up to her. I initially felt really bad that I had got it wrong and spent the next forty-five minutes beating myself up mentally.

But eventually, knowing now that I have Asperger’s, I was able to stop and think to myself, “Yeah, you got it wrong. But it’s understandable because you don’t do that kind of thing very well. At least you’ve learned what to do next time if it happens again.” So having a diagnosis – even a late one – proved vital to me as it stopped me going down a route that had previously led to depression from feeling bad about myself. That is why diagnosis is important, the earlier the better, but if not just make sure that you (or your child/friend/relative) get(s) assessed and worry about the rest later.

Raise Autism Awareness – watch & share this video

What is Autism? What is Asperger’s Syndrome? Is it common? What can be done about it? – From the National Autistic Society (UK)