I am Not Suffering!
If I were to utter the word Asperger’s to you, what images would it conjure up? How many of you actually know the truth? If a friend told you their child had been diagnosed with Asperger’s, how would you react? What would you say? The truth is, there are so many misconceptions about the syndrome that most of your answers would probably make those who ‘suffer’ cringe.
It is time to dispel some of the myths.
My name is Greg and I have Asperger’s Syndrome. I was diagnosed aged 12 and I’m now 33 years old, married with two children and a successful career.
I feel it’s time to talk about the common misconception that people with Asperger’s Syndrome “suffer”. This word alone causes massive frustration. The idea of sufferance creates this image of people who are perpetually not quite right.
I have Asperger’s Syndrome, I don’t suffer from Asperger’s Syndrome, I have ‘it’ but it doesn’t define me.
I personally don’t regard it as a sufferance. But I feel the rest of the world judges me to be suffering, and as a result of that, I am the target of that thought process and so a sufferance I must have. Right?
What does having ‘Asperger’s’ mean to me?
Having Asperger’s defines how I view the world. The condition shows itself in how I receive people around me and how I operate on a day to day basis but I don’t regard any of that as suffering. I consider myself very lucky not to suffer as many in our world do. This is an issue that I have thought long and hard about. Perhaps I have not suffered because of those around me. Maybe, unbeknownst to me, those around me regard Asperger’s Syndrome as a sufferance because of the impact it has on their lives.
After all, it’s those people around me who have had to learn to cope with my different way of viewing the world. It is those nearest to us that see how my outlook on life helps and hinders me (sometimes in equal measure). They are there to pick me up when I’m down and ‘suffer’ the frustrated outpourings of their loved one.
So who is it really that ‘suffers’?
One of my biggest frustrations at the moment, one I can sometimes appreciate I suppose, is that people seem to think that everyone is a little bit Autistic. As much as it is now becoming much more socially acceptable to talk about the spectrum of Autism and Asperger’s (and I am grateful that it is indeed becoming more socially acceptable to have these conversations out loud), it seems now that everyone shows symptoms. That is the danger now Autistic Spectrum Disorders (ASD) have become so much more relatable.
We all have our little foibles, nuances and specific ways of doing things, but that does not an autistic person make! And those who live with it on a daily basis find themselves increasingly frustrated by the almost blasé way that people spit out “oh he must be a little bit on the Autistic spectrum”
Being Autistic is not about being a bit kooky and having a few differences from others around you. It’s an entirely different perception of the world around you.
It’s your theory of mind. Or lack of theory of mind to be precise.
Theory of mind is this ability to notice how others are thinking or feeling and the impact that has upon you. Most people don’t have that issue and don’t understand what it is to live without it as it’s so profoundly not in their make-up. So as a result, when you explain that part of what ASDs are to others, it can seem as though you are suffering.
Your understanding of the world is so different to someone without an ASD that you instantly garner sympathy. It’s kind of like meeting someone who has never experienced toilet roll before. They must be suffering because you cannot imagine your life without toilet roll. But they are not!
I don’t think I suffer.
I don’t struggle on a day to day basis. I have my testing moments like everyone does.
I consider myself a lucky person in the greater scheme of things. So why does it annoy me to be told that I suffer?
It annoys me because of the way it’s spoken about by others.
Asperger’s Syndrome is different. “You’re different, therefore you must struggle because you don’t operate in normality.” Don’t we all struggle? Don’t we all have ongoing battles and things to bear?
Isn’t that the human condition? Not an Autistic condition.
Isn’t part of who we are to fight against the struggle? To overcome problems, sometimes losing, sometimes winning. Isn’t that what being human is all about?
Well for me, as a “sufferer” of Asperger’s Syndrome, my sufferance is socialising with people. Understanding. All the ramifications of my lack of Theory of Mind. My ability to offend without realising I’ve caused offence. My inability to read social situations and the resulting self-created anxiety and paranoia that surround those inevitable emotions and feelings. My failure to predict others’ behaviours. Maybe I am suffering from that.
Perhaps I shouldn’t be annoyed. Perhaps I should simply absorb all the sympathy I can get.
However, it’s my life. If I live my whole life as a ‘sufferer’, then surely that doesn’t help me to overcome, or grow, or live with my AS.
I can’t remove my Asperger’s. I’m not even sure I would want to, because it’s not an illness I can cure. It’s just me. I don’t think I’m suffering. I don’t like that some people think I am suffering.
Consider someone who has a cold. They are suffering from a cold. They have an ailment that causes them to feel different and experience their life in a different way. It doesn’t change who they are, simply how they view the world at that moment in time.
I am someone who has Asperger’s Syndrome. That is part of me. I’m not suffering from it, I have it.
(Note from The Editor: Many thanks to Greg for opening up so honestly about his life. Hopefully his words will show that we need to stop judging others. Greg talks openly about his life and journey on his own blog which you can find here, or to find out more, you can visit his author page here.)