Better Late Than Never

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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.

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4 thoughts on “Better Late Than Never

  1. I’ve taken the three self-tests on the net and have fallen so within the spectrum that I am surprised that the result was so clear. I’m 49 and do not really feel the need for an official diagnosis. I’m glad my 21 year old has gotten one – finally.

    I was lucky in a sense. I grew up in a sect (mormons) and that meant that I was dragged to every activity under the sun and trained in social niceties by my parents. Had to get new members – you know. That helped a lot. But I still to be myself. After all these years I have started wondering if maybe Aspergians are the “normal” ones. People who are so-called neuro-typical are bizarre creatures who use illogic with a vengance.

  2. As long as you’re happy with a self diagnosis I’m glad you’re okay with it. However there may be help available only if you have an official diagnosis. My local advice service for adults with ASDs are like this for most of their services.

    I’ve often thought that having Asperger’s lets someone see how the “normal” things that most people do are quite crazy. I’ve been told that I have a nuanced approach to things, which may be related to my Asperger’s.

  3. How I envey people who were diagnosed as children! girls usually go unnoticed more often than men for hiding their symptoms and not acting up. what a bummer to not know for so long, and how it shatters your self confidence. how confusing and frustrating this is. I wrote a post about girls and autism in my blog, about all the problems that can arise from not being diagnosed, all those complications.
    oh, well, better late then never.

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