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.

Advertisements

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

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

Few people enjoy a party or night out more than teachers do; the truth is that being a teacher these days is tough indeed so any opportunity respite from the ever-constant pressures of work is grasped with both hands. Looking back I now see examples of my then undiagnosed Asperger’s Syndrome creating barriers for me in social situations.

In December 2011 I was an inexperienced trainee teacher and in the staff room the head of the P.E. Department asked me “what are you doing on Friday?” I replied that I was going to visit my nephew because it was his birthday. Suddenly the three or four of us that were in the staff room fell silent and one of the other teachers laughed at me and explained that I was being asking if I wanted to go out to a Christmas party with the P.E. staff . Before I could utter anything else I was told to “forget it” and the head of P.E. briskly walked off in a manner that suggested offence. This is a trait common to people with Asperger’s Syndrome – I was being too literal because I missed the unspoken social cues in the conversation. It made me feel like a complete idiot because the teacher thought that I had publicly snubbed his invitation. I didn’t know why I had made such a stupid mistake because I should have been diagnosed when I was three years old.

I t has never been unusual for me to upset people without meaning to and wondering why they were unhappy. I would often not even know I had upset them at all until situations got worse and it had to be pointed out to me. After failing my teacher training course I would finally get to grips with the reason why I always seemed so weird and different compared to other people of my age; how I never seemed to fit in with others and why purely social situations such as loud parties made me feel sick with anxiety.

After the course I couldn’t escape my feelings of inadequacy. I turned my anger on myself through self harm and alcohol abuse because I couldn’t handle the sheer intensity of the emotions I was feeling. I was put on anti depressant drugs and had fortnightly visits to the doctor, whom also prescribed counselling, which didn’t work very well to begin with, as I now realise that my atypical brain didn’t fit in with the process. After a while my mother, whose suggestions that I may have Asperger’s Syndrome I had scoffed at, had found out through the Internet that people with the condition were very often prone to depression and being obsessive about certain things. She had long told me that my obsession with Doctor Who wasn’t normal.

With this in mind I thought there wouldn’t be any harm in asking my doctor for an Asperger’s assessment. I soon found out that, because I was an adult, my doctor would have to apply for special funding in order for me to be accessed by the NHS. This could take up to two years, at which point I may be turned down. So a decision had to be made to spend a lot of money to get a private assessment, or to wait and gamble on the NHS…

Image

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

In 1992  I was three years old. I was, quite probably, one of the worst toddlers imaginable. I broke all of my toys trying to see inside them to find out how they worked. I broke most of my family’s stuff that wasn’t kept under lock and key. I even managed to break my baby cot and my parents had to keep repairing it with string. This only got worse as I got older.

At school I was awful, to the point where I was sent to all kinds of counsellors and behavioural psychologists. I was also sent to a dietitian to work out why most food made me feel nauseated when I tried to swallow it. My teacher at primary school invented a report card system to tackle my bad behaviour.

All the while my alienation from my peers grew, especially as I reached secondary school, where I received more counselling for my perceived “sadness”. I never had a girlfriend as I couldn’t interact very well with my peers because I always seemed so different, or weird, compared to other kids of my age. I worked towards getting the best qualifications I could so that I could become a teacher, as I always seemed to have academic talent, as I could read before I started school.

I managed to get into the university of my choice. I never did the freshers thing where new students get hammered and party all week, as the prospect of doing so made my stomach turn with anxiety. I received more counselling for social phobia/social anxiety, but alas, it never got to the bottom of why I found it very difficult to make friends. So I spent the bulk of my time nerding it up in the library for between six and eight hours at a time. I enjoyed the studying and it paid off: I got the second best degree class possible. I had no social life to detract from my work.

It was when I got accepted onto a highly competitive post-graduate teacher training course that set in motion a chain of events that would change how I perceive myself, and the rest of the world forever…

Image