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.

Autism.

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.'

The Voice

The 'Voice'

 

The last few months have been a challenging time for me.

I have had to accept that sometimes, even when everything seems to fall into place as if it was meant to be, things still don't always work out the way I had expected.

I have always followed the little voice inside me, also known as your gut feeling. Whenever I heard that voice, I knew whatever the outcome; I would be making the right choice. The word 'fail' did not truly enter my vocabulary after this feeling. If what I expected did not happen, I would then rationalise that it was therefore not meant to be or I needed to learn something from if it had not worked. Had I been religious, I would have chalked it up to a higher power trying to teach me a valuable life lesson.

Experiencing this feeling was my way of knowing when I'd chosen the right path to follow. Now, for the first time, my inner voice had failed me. I am, even now, still reeling from the confusion and heartache this has caused.

I choose to first see the potential in people, not their faults. Apparently I have high expectations of people around me. I know this because friends, family and even my autism coaches have told me. When I look from my own perspective, I see how I measure others against what I expect of myself. A simple concept such as wanting to challenge myself to the extreme, distorts my view on how I interpret the behavior of the people around me.

When I see someone not pushing themselves to the level I push myself, my first instinct is to push for them. I came to a breakthrough a few months ago where I faced the distinct possibility of loosing a good friend through the pressure I put on him. Even though my initial reflex was to help in this way, I realised that I was forgetting to look at the person.

 

As a wise man once told me, your greatest advantage in life can also be your greatest disadvantage. This life rule of following my gut feeling, that had never failed me before, had now, for the first time, turned into my greatest disadvantage.

If you look at someone you love for example, and see how much potential they have, are you really seeing the reality of who that person actually is at this moment in time?

I have had to learn the hard way that this is not the case. You are superimposing another reality, your reality, onto this person.

Some of you might be reading this and think, ah, this is her lack of theory of mind that all people with autism supposedly have. However, when you really think about it, how often do you truly see the person standing in front of you?

We colour our world and the people in it with our own perception. We might hope that our children will have better lives then we did. Yet when you look at this example, who are we to say what will make our children’s' lives better...for one parent that would be growing up without money issues, for another getting a good education (i.e. college or university) and for someone else it might be the hope that their child will just be happy.

However, these hopes are all subjective. Your reality and opinions are coloured by your past experiences. Maybe you did not get to go to university but really wanted to. Or maybe you grew up in a household where money was scarce and you experienced the stress that goes hand in hand with that.

The other person has not had these experiences: you have. When we come to the subject of happiness, well, that is the most subjective idea of all. One persons' version of happiness can be another persons' version of hell. It is all a matter of perception.

So don't we all sometimes have difficulty with theory of mind?

I just have more chance of putting my foot in it if I get stuck in my idea of what would be the best path for someone to follow. Then again, if you watch the reality series' that are very popular at the moment for example; 'Toddlers and Tiara's' (where children take part in beauty pageants in America), the majority of children there obviously want to be doing something else rather than practicing how to walk, smile and turn. I can count on one hand the number of times I have actually seen a child who obviously thrived and loved to practice, perform and take part. The number of times I heard mothers' say with a smile on their face, 'I wish I had been able to participate in beauty pageants when I was her age' or 'I'm living through my daughter', can be counted on more than two hands.

If that isn’t an argument for looking at the similarities instead of the differences, then I don’t know what is.

So, if I see the potential of who someone can be as my reality, but am not able to link two versions of reality in order to get an authentic view, how can I rely on my gut feeling?

The answer is, I can't.

Crap.

What is possibly one of the biggest problems in life if you have autism? In my opinion, it is the feeling of doubt. What happens when someone is unsure about something? You get stressed!

People with autism live with stress on a daily basis. Going through life with high levels of stress causes our mind and body to live in a constant fight or flight mode. One of the rules I had put into place to help cope or sometimes even totally avoid stress had failed me. This caused me to re-evaluate my rule of following my gut feeling and I came to a shocking epiphany!

If our gut feeling is coloured by our life experiences, and had worked for me for so long, what had changed?

My age. I was older.

I have grown, seen more, felt more and learned more. The Monique I am today is not the Monique from 15 years ago, or even from 4 years ago.

The younger you are, the less experiences you've had which distort the 'voice'. Therefore the older we get, the greater the chance that the voice will be distorted by everything we are experiencing in life.

Will I now have to dig harder through the layers life has built up to hear my true gut feeling again? Will it be more difficult to hear the voice in all areas' of my life in general or only my personal life when emotions are involved?

I have no answer to those questions at this moment in time.

My hope is that I will discover the answers quickly, but as my sense of time is pretty dreadful, I know that it may take longer than I expect.

This is a human problem, not an autistic one. It would be too easy for me to pass this off as a side effect of autism itself. Yet I do see it as a response to my autistic way of thinking.

I have spent years developing ways in which to survive and thrive in the world. I have done this because of autism. It makes total sense that these ways will also have to adapt and change as I myself do.

So what is the difference between the present and the years before my diagnosis? It is that I am now fully aware.

Awareness is like opening Pandora's Box. Once you open your eyes to it, you will never be able to close them again. I have sometimes found myself envying a person with autism who has not yet had that awareness. Yet had I not opened my eyes, or had them opened for me, I would not be doing what I'm doing today.

My work is based on having this awareness.

There is a balance to everything in life. The Chinese figured it out and have shown it so beautifully with their yin and yang symbol. Even in this, there must be balance.

I find myself asking, how many people in this world are truly aware?

 

 

Monique Post 2013