Thursday, 1 August 2013

Thriving on the Spectrum

I find myself with a rather large dilemma.

After being asked to participate in the 2012 Awares international autism conference I of course looked through the 44 people that would also be taking part. I am happy to admit that I was more than impressed with the online company I would be keeping, but also healthily intimidated.
You cannot help but consider why your name should be included on such a list.  
This therefore leads me to ask the questions; why should someone find what I have to say interesting and what makes me so different?

 Differences force us apart from the rest of the world and yet pull us all together. It is a complicated and wonderful contradiction. I could reel off a list of possible things that make me different from you. However, as we are taking part in a conference on autism, the most logical 'difference' that sets me apart is just that.
I received my diagnosis at the end of 2008, a day that I will never forget. I embraced this change in my reality because I was ready to, even though I could not have foreseen the many consequences it would bring. The knowledge I have since accumulated about myself, my personal version of autism and the people around me is priceless. A gift that I would never return.
Yet for every advantage there will always be a disadvantage. That disadvantage is one that is becoming increasingly apparent each year that goes by.

I started off living life in my reality. When that reality came crashing down I entered a time of crisis and knew it was necessary to start my journey of discovery. I lived in a world of permanent fog which sometimes faded into a mist, but never fully cleared. The day Dr.Cees Kan uttered the magical word “autism” was the day the sun came out and cleared that persistent fog.
Finally I could again move forward in life.
However, once you have opened up the pandora's box containing that awareness, it becomes impossible to turn back time. I found myself moving away from the world I thought I knew, to one only I could discover.

The feeling of always walking slightly out of sync with the rest of the world is one I feel comfortable with. After all, I was taught to embrace being different and to enjoy being unique. Having an artist for a father will (thankfully) do that to you!
Yet now I find myself in a sort of no-man's land.
The world as I know it has changed. The world of autism is one in which I have not yet fully found my footing.

So where do I belong?

This question is, I believe, at the heart of every human being. We define ourselves through things such as our families, our jobs, our religion and our relationships to name just a few.
I define myself through myself, not the world around me. This is shaking my world as the 'self' that existed prior to my diagnosis, no longer exists in that form.

My former 'self' grew up in Wales in idyllic surroundings. My father was Head of Art at Atlantic College, a college for 16 to 18 yr old students who came from all over the world to study for two years. They came together to not just learn from the teachers, but also to learn from each other.
The world I was brought up in taught me to embrace differences and to enjoy and anticipate change. New faces arrived each year. New languages echoed across the campus. New students found my childhood hidey-holes and forced me to be more creative.
And yet some things stayed consistent. The seasons came and went, student faces always changed and yet the castle environment always stayed the same. I believe this introduction to change within such a safe environment meant that I was better able to prepare myself for the abstract life concepts I would later encounter.

I naturally seek to become aware of the consistent aspects in my life.
My three cats and dog make my house into a home and force me to be aware of the surrounding world.
My dog Kaya has helped me in countless ways and accompanies me wherever I go, even when I work. She becomes at those moments the center of my universe and provides me with the consistency I look for in life. She helps to reduce the negative consequences of having autism. I recently traveled without her and was amazed at the positive impact she has had on that part of my life.  
As I am writing this, all three cats are lying on the sofa next to me with Kaya curled up on my lap. How can you not appreciate the world when you are surrounded by so much life (and love)?

In answer to the question 'where do I belong', it is moments like this when I know exactly where I belong. Even though I have not yet found the balance, these moments where everything clicks into place are beginning to happen more often.
After discovering that autism was the key to understanding essential parts of myself, I focused my attention on getting to know the parts of me that had been buried for so long. With the help of my autism coach, my eyes were opened as to how many different strategies I had developed and why they had not worked anymore prior to my diagnosis. We worked towards getting to know the positive and negative sides to my autism which were, and still are, exacerbated by my physical disability.

Unfortunately my back has decided to age faster than the rest of me, which causes me chronic pain. When you go over the limits your body sets for you, it of course makes total sense that you will pay for this in some way whether it be tiredness, getting more easily sick or having some form of pain.
Due to the autism, I nearly always go over the limits my brain wants to set for itself and this causes a knock-on effect of causing stress and therefore the weakest place in your body getting the brunt of it. This would, in my case, be my back.

The threat of pain forces me to be constantly aware of having to keep a certain amount of balance in my life. Keeping a balance means that I cannot afford to let myself fully go in my autistic ways. An interesting dilemma!
This means making sure I use the life skills and coping techniques I have available to me to keep my autism more under control. I am especially aware of the amount of energy this costs me but I have accepted this fact of life for the most part.

I will never let myself be controlled by my autism but I will also never deny it or the problems it causes me. Denying that what also makes me strong can only make me weaker. The difficulties with my back could only be seen as something negative. Yet it is teaching me to be aware of how I and my body feel. I of course do not always get this right. However, I do not think that I would have been able to learn the skill of quickly implementing lessons learnt into daily life had this not been the case.       

In regards to my diagnosis, if I had not embraced and learnt from it, I would not be doing the things I am doing today. I give lectures and workshops about autism since 2009 and also take photographs for a living.
Contradictions to what most people would expect a person with autism to be doing in their lives.
I have my own business, Post Productions which involves a ridiculous amount of organizational skills. Skills that I am still developing and perfecting with the help of my two autism coaches as well as my business coach. Due to the work I am doing with my autism coaches, I am now more able to recognize the moments when I should ask for help. This has a positive knock-on effect on my productivity within my business. As I wrote earlier, every advantage has a disadvantage, and vice versa.
A member of the public at one of my lectures recently asked me if I would want to be 'cured' of my autism. As I am sure you can imagine, I first had to take a deep breath before answering. I proceeded to tell the lady that had I not been able to communicate and trapped in my own world, yes, you might use the word 'cure'. That is not a life I would wish for anyone, whether it be because of autism or for another reason.

In my case, no, I would not want to have my autism stripped from me. It is true that autism is a large contributing factor to making my life more challenging and sometimes downright tiring. And yes, there are days when I am fed-up, exhausted and wonder where I am going to find the energy to get up in the morning. It is also true that I not only have autism to contend with on a brain function level, but a physical disability to contend with body-wise.

Which one of these limits me more in my mind? Which one would I label a disability and limitation? I choose my back every time.
The lady looked surprised. Shocked that I had not conformed to her opinion whilst able to give clear reasons for why I would not choose to be 'cured'. I made sure to explain that I was not in any way against the scientific community looking for why autism happens in the human brain. The shear scale of the spectrum is reason enough for research to happen in that field.
I would not want to loose that part of myself, the good and the bad. But this is because I am capable of setting goals for myself in life and reaching them, whereas a lot of people with autism get stuck in the making of plans and not getting any further than this. I learn from my mistakes and actively confront myself with my weaknesses in order to further my knowledge and grow.

I think the more important question is, 'would I have not wanted to receive the diagnosis?'

My answer to this is a resounding no. The process of diagnosis happened because it was necessary from my point of view. Had I not had one, I would have stayed stuck in a monotone, problem solving state of mind where I would have missed the capacity to see alternative solutions.
The world might be difficult and sometimes impossible to decode, but it is a wonderful and magical place. I doubt I would see the magic in such a clear manner were I not so obviously confronted by my strengths and weaknesses on such a frequent basis.
This is something I would not change for the world.

'Autism is my gift, not a restriction.'

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