Diagnosis Story 1: What Aspergers Means To Me

I am thrilled to announce the start of a very special project for the month of April (i.e. Autism awareness month)!

It has been just over 3 years since I first discovered I was on the Autism Spectrum. This process of discovery can be a huge personal revelation. This month I’ll be sharing guest posts from others sharing their own diagnosis story.

To start us off, today’s post is a re-blog of the very first piece I ever wrote about Aspergers. It was written to explain to my friends and family about this amazing new thing called Aspergers that I just found (and couldn’t stop talking about!). I’ll let the article speak for itself…

—ORIGINAL POST: 18th March 2015—-

This post is intended as a VERY brief explanation for those who have just heard the news that I have Aspergers. Basically, about a month ago I read a book called “Look Me in the Eye: My Life with Asperger’s”. Identifying with many of the experiences of the main character I was moved to research the condition online and it was such a perfect match that I diagnosed myself on the spot, attended an Aspergers Victoria support group meeting the next day, and haven’t looked back since!

In light of the above I will attempt to answer the two most common questions:

“What is Asperger Syndrome?” and “What do you mean you diagnosed yourself?!”

First tho, before I jump into that, I want to say what the diagnosis means for me. First, it should be said, that Aspergers is just a label. It doesn’t actually change anything about me. The reason it’s important is because it means that I’m not crazy! I’m not exaggerating when I say I feel different. It’s not my paranoid imagination that feels forever misunderstood. Trying to do things ‘my way’ is not just contempt for authority. It validates a lifetime of trying to explain myself to others (and not being believed!). So much of my life, my behaviour, my preferences, my skills and struggles make PERFECT sense in light of this condition!!

As far as typical Asperger traits go, you can look up a list for yourself. In my view, the visible symptoms (anxiety, social awkwardness, overly structured behaviour etc.) all stem from a different way of thinking and perceiving the world. If you’re thinking these traits are not obviously visible in me it’s because I’ve spent my whole life developing strategies to minimise their impact. Practice makes perfect, so even if I still struggle with some things, I have no problem in the vast majority of everyday situations. If you’d met me in primary school you’d have seen a different story!!

But enough of the ‘typical’ stuff, for me Aspergers means that I am highly intelligent, extremely creative, with good attention to detail, and a very logical, structured brain. It might not be immediately obvious how these combine into what many refer to as a ‘disability’ or ‘disorder’, but the reality is that each one of these traits presents problems in daily life. Essentially, what Aspergers makes it hard to do is to be ‘normal’, and to interact with society in ways that other people expect. As Dr. Tony Attwood famously says, “You don’t suffer from Aspergers, you suffer from other people.” To repeat my favourite analogy, it’s like being left-handed in a world that is constantly asking you to use your right hand.

I am just ‘different’ and this difference invades every part of life. It’s difficult to explain simply, but to give you some idea of the depth and subtleties, one of the most difficult things to deal with is ‘mixed messages’. People virtually NEVER say what they ACTUALLY mean! Maybe you’ve never really noticed because it wasn’t a problem for you, but this was very difficult for my logical, black and white brain to accept. It took me a long time to learn how to deal with this. Can you imagine how difficult it is to interact socially without good working knowledge of ‘mixed messages’?

Another example is that my attention to detail comes with the ability to narrow my focus. This means that I often miss what’s going on in the background, and hence many life lessons which others just ‘pick up’ along the way are lost on me. This leaves me with ‘gaps’ in areas that others consider to be ‘assumed knowledge’. It’s usually embarrassing to expose these gaps, since asking usually provokes too much of a negative reaction, so I have learned to just brush over them. This, in turn, compounds the problem since they never get filled.

Other classical traits of autism (Aspergers is sometimes referred to as high functioning autism) which constantly get me in trouble are things like being naturally honest, non-judgemental, and valuing being true to myself. Again, the ‘problem’ with this might not be immediately obvious, but just think how counter-cultural all these traits are! What would happen if I lived life assuming that all others in the world were as naturally honest and straight forward as me? Such naivety surely wouldn’t last long! Also, ironically, since these traits are often seen as ‘desirable’ it further compounds the problem of people not believing what I say about myself. When I say that I ‘can’t help’ being honest, or that I’m just naturally not as judgemental as most, it sounds like I’m just flattering myself, or trying to make out as though I’m ‘better’ than others… which of course makes NO sense to my non-judgemental mind! Yet normally others can’t see this contradiction. If you are non-judgemental, you CANNOT also believe that it is BETTER to be non-judgemental!! Argh… again, frustrating to say the least!

Perhaps one of the biggest problems tho, is that I am constantly misunderstood. For example, my learning style is to ask lots of questions (and fill the ‘gaps’ that I identify), but this is often misconstrued as challenging authority. When I try to explain that I ‘work differently’ I am often accused of arrogance or of thinking that I’m better than everyone else. When I say that I know ‘myself’ it is often seen as an ‘unwillingness’ to accept new ideas. When my words or motives or actions are peculiar, I am usually treated with the utmost suspicion. ‘What’s he hiding?’ people think, and they dismiss my very simple explanation for my actions. The frustrating fact is that I am telling the simple truth and that in order to understand, people only need listen to my words… but, as discussed previously, people almost never say what they mean. This also means that, frustratingly, people almost never believe what I say (if they suspect it’s not what I mean).

This brings me to the subject of my self-diagnosis. I think Michael John Carley sums it up beautifully:

“Even with the diagnosis, most people will still carry the fear that they won’t be believed. We get this piece of paper, this confirmation, in order to have our experiences finally justified or understood.”

So with that in mind, last Friday, I had my self-diagnosis confirmed by a very experienced clinical psychologist. I have mixed feelings about this. In some ways it’s really good because I know I’m not crazy, yet at the same time it reminds me of the painful fact that people don’t believe what I say about myself.

So a lot of this might sound very frustrating, but in reality, that is just my life. It has always been frustrating. The only difference now is that I have a name for the cause of that frustration. Fortunately I actually like myself, and I have never attributed any of the ‘problems’ described above to me being ‘defective’ in any way (which sadly some people do). In that sense the diagnosis has triggered a sense of pride almost. I’m clearly very excited about the whole thing! I haven’t seen any downsides yet! On the contrary, every struggle I’ve ever had in my whole life is starting to make sense. Everything from social occasions to relationships, authority, school, work, you name it! It all makes perfect sense now. I’ve been getting new revelations everyday for the past month and I’ve got no reason to believe they’ll stop! Not for a while yet anyway!

I’ve also started a new blog called “Aspergers From The Inside: My Aspergian Mind Explained”. I want to use it as a place to express all things about my condition, a base for my video blog, and as a platform for future tirades about the kind of daily frustrations that no-one would ever realise.

Well that will definitely have to do for an ‘introduction’. If you want to keep updated on this please ‘follow’ my new Aspergers Blog (Click here for the link and use the blue ‘follow’ button on the sidebar). It only has one post so far, but hopefully that will change soon!

Thanks for reading!

For more on my diagnosis story see this video:

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