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.Image

 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 4th 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)

Advertisements

Better Late Than Never

Image

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.Image

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.

On what should have happened in ’92 (pt. V)

I don’t like dancing. I state this as an empirical fact. Like the sky being blue because of the way light diffuses through our predominantly nitrogen based atmosphere; like pi being a number that isn’t exactly three or iambic pentameter is a sequence of stressed and unstressed syllables. I don’t like dancing.

At my cousin’s eighteenth fancy dress birthday party my undiagnosed Asperger’s Syndrome reared its ugly head once more. It was dark, noisy and there were lots of people there that I didn’t know. It was like a headache in a broom cupboard. I was sat waiting for to be over when a rather enthusiastic young Irish lady, who was a friend of my uncle’s, asked if I would like to dance with her. I refused politely, but, thinking that she was doing her best to cheer me up, she persisted and I kept declining her offer. But it didn’t end there as she tried to get me to dance twice more. Eventually, because it was a social situation I had no experience with I panicked and told her to “go away and leave me alone. I don’t want to dance with you, or anyone else, so please stop asking me!” As you would expect, this didn’t go down very well with my fellow party goers and my parents were very embarrassed and said they wouldn’t bring me to family parties any more if I did it again. If I got diagnosed when I was three, instead of twenty three years old they would have known I had Asperger’s Syndrome and understood what had happened.

It was my parents who scrimped the money together for a private diagnosis with one of the country’s leading experts in adult Asperger’s Syndrome. My mother and I had to fill in a pre-appointment questionnaire that mostly addressed my behaviour as a young child. The specialist very quickly confirmed that I had moderate/severe Asperger’s Syndrome, saying that he was surprised that it was noticed by my school teachers or my doctor. It turned out that my strange attitude towards food, such as being very picky and having a structured way of eating my food (in order of what will go cold the quickest) was a very telling sign.

Another way that he knew I had Asperger’s Syndrome was that I found open questions, such as, ‘are you boring?’ impossible to answer with a straight yes or no. He said it was because the condition often makes your brain very pedantic, which meant that I must seek more information from the person asking the question or to give a convoluted answer as a way of applying my own scaffolding to the question in order to answer it.

So there I was. Suddenly the whole world made sense at last. I felt both sad because I was told I have an incurable brain condition, but at the same time I was so relieved that the problems that I have had weren’t all my fault. It was like the ending to The Truman Show when Truman finally realises who he is and what the world really is for the first time. I was ready to walk through the door and move forward knowing, like my dad always says, that “There’s a good time coming”.

P.S Here’s the rest of the vid: https://www.youtube.com/watch?v=6ZMZYrdXtP0