Everything changes / nothing changes

It’s been two years since I got diagnosed with Asperger’s Syndrome, so maybe it’s the right time to look back and reflect on what has changed since then.

The answer I usually give is that everything has changed, yet at the same time nothing has changed. Getting a diagnosis obviously doesn’t change you as a person or anything about the way you are. It’s merely a tag attached to you that says you’re outside of what society classifies as normal. But what does normal mean anyway? Looking at other people can be confusing: People want to be individual and unique, yet they don’t want to be perceived as mavericks. The pressure of wanting to belong to certain social groups dictates their demeanor, being themselves seems to be difficult for most. Everybody wants to stand out and not be labelled outsiders at the same time, hence people go with the flow. They care about what others think about them and adapt to their environment as much as they can for the sake of blending in and to feed their egos. Maybe the concept of normality is a contradiction in itself.

I used to be a bit like that when I was younger. But with each passing year I realised the incredible amount of energy it required and how little I succeeded in belonging to groups or adapting to my social environment. It seemed to me a somewhat pointless exercise, so over time I gradually became more true to myself, not trying to please anyone or to succumb to any constraints imposed by society. Yet I couldn’t get rid of that nagging feeling something wasn’t quite right.

I think my diagnosis has actually helped me to recognise my true personality and to see why I am the way I am and how it has nothing to do with being normal or not, that it’s rather a different way of thinking and perception that makes me the person I am. It has helped me to feel a bit more comfortable in my place and to accept that there is something in my brain structure that makes me hang on to my strict daily routines, that makes me want to spend a lot of time alone with my special interests and that usually I just don’t cope too well with too much noise, too many people or unforseen changes.

It wasn’t all that simple right from the start of course. In fact my Asperger’s diagnosis hit me like a bolt out of the blue and I was anything but prepared for it. I had hardly known anything about autism before, so being confronted with it for the first time was a real shock for me. I only wanted to have another go at easing my lifelong depression when the new psychiatrist I went to suggested it could be a form of autism that triggered my ongoing mental issues. When after a few months the diagnostic appointment at a specialised clinic finally came and I was told to be clearly and unmistakenly autistic it felt like a true watershed moment. Being some kind of relief on the one hand, it started a long and painful period of coming to terms with the past on the other hand. Almost everything in my life suddenly seemd to appear in a completely different light, to make sense, to become logical in way where before a mixture of confusion and helplessness was the predominant feeling: The horrors I‘ve been through at school, the problems with my family or the way I intuitively set up my professional life in accordance with my strengths and weaknesses suddenly all made sense. The realization of having Asperger’s of course wouldn’t change any of this, but it would allow me to finally put some demons to rest and to stop questioning what I have all done wrong in the past, to stop accusing myself of not trying hard enough to fit in more seamlessly and to cause less trouble for myself and for the persons around me. It took me the best part of the last two years to get there though.

I have in the meantime become more accepting of myself and my life, I have developed a better understanding of what I need and what isn’t good for me. Obviously I am still on a journey that probably ends on the day I die, but it feels as if I have entered a new stage of life I couldn’t have reached without the diagnosis. It doesn’t change me as a person, for my autistic traits have always been there and will stay with me for the rest of my time. It has however re-adjusted my personal balance a bit and it finally feels as if I’ve been put at the center of my life after all. It hopefully enables me to utilize the strengths that come with my condition to a better extent and maybe cope with the downsides in a more reasonable way.

Over the last two years I have met a few people on the autism spectrum, each of them with their own unique and intriguing life story — from a lovely guy in his late teens who got diagnosed at the age of two and now uses his strengths impressively on his way through higher education to a fascinating person at 60 who only found out about his condition at the age of 55 and who, despite having been through massive difficulties in life, still manages to be positive and is willing to see the new discoveries as the beginning of a fresh start. These are people to look up to and to learn something from, as they are making the most of it. They are what they are because of it and not despite of it. They live with it but don’t let themselves be defined by it.

One question that has come up in conversations with some of these people is if there was a cure for autism available, would they want to be healed from it? Nobody I talked to said they wanted to be cured and neither would I. I don’t want my autism to be healed or altered in any way. It’s an integral part of my character and my way of being. Taking it away from me would turn me into a significantly different person. Asperger’s is not an illness and it can’t and it shouldn’t be treated that way. Speaking for myself, I feel better since I know I have it and I feel in good company.

Coming back to the start of this piece, I think it’s down to society’s basic instinct that everybody should be the same somehow. What doesn’t fit needs to be changed, no matter how, whether the person concerned likes it or not. We are different and there must be a reason for it. Taking away our autism would deprive us of our special skills that are essential for us to succeed in life, for example our ability to focus on things, our reliability and honesty and basically just the way of looking at things differently.

Granted, there are downsides to it and we all know it. I have, amongst others, issues with my communication, my lack of empathy and my inability to intuitively understand gestures and facial expressions. Still I think it is much more important to focus on the abilities of autistic people rather than the disabilities. Getting a diagnosis has helped me with that. It has made me more aware of myself, allowing myself a fresh outlook on life and the world around me.

It is good how it is.

There is no need to change anything.

Thank you for reading this and for all your encouraging feedback over the last couple of weeks, I appreciate it very much. I would like to dedicate this piece to Terry and to my friend from Liverpool.

‚I find normality absolutely stifling and terrible. 
The most terrifying thing about normality is that it turns young men into old men extremely rapidly.’ 
Bernard Sumner