Unexpected Lessons

I was recently asked my opinion about the case of a Dutchman with autism who had received a jail sentence after publishing fairly vile and rude Twitter messages about the Queen of the Netherlands. I'll call him the Twitter guy.

The more I looked into this story, the more I realised the intricacies of the case. You see, Twitter guy had already received two official warnings for sending threat letters to the Prime Minister and another event and was therefore on probation.

His four month prison sentence was based on all of these events and also took his autism diagnosis into account; otherwise he would have received a longer sentence according to a judge.

A few weeks later I heard the news that Gary McKinnon was not to be extradited to the USA because of hacking into 97 military and NASA computers causing over $700,000 of damage. This decision took the government 10 years to make. 10 years of waiting. 10 years of his life on hold. 10 years of fear of being 'fried', as some clever soul in the American press wrote.

Again, the diagnosis of autism had been taken into account. Mr. McKinnon has always acknowledged that what he did was technically against the law, though possibly in his mind, the means justified the end. He does acknowledge that he will be punished.

If I were the US government I would be employing Mr.McKinnon to find all the loopholes in their supposedly 'secure' firewall systems! He has proved that they are there and that he can find them. But then that would be out of the box thinking. Unfortunately something that is not that common in government.

A week after this news, a poignant and emotional documentary aired on Dutch television called 'The Rules of Matthijs'. A filmmaker and best friend of Matthijs filmed him during the breakdown of the world around him after loosing his house which resulted in his consequent suicide.

Unfortunately the documentary is in Dutch and has, as of yet, not been translated into English. Keep your eye out for it in the future as I'm sure this will happen due to the many awards it has so far received.

The judge who decided he was to lose his house said something that chilled me to the bone,’ you are hiding behind your autism.'

That a judge can say this in this day and age shocks me. Yet maybe I shouldn't be so shocked?

This sentence fits in with so many questions I'm often asked, such as 'but you don't look autistic', or 'what problems do you have then, I don't see any.'

Notice that these are more statements than questions. I truly don't mind if someone asks me how my autism works or what the advantages and disadvantages are.

Stating that I don't “look” autistic and then waiting for my response, means I actually have to defend myself. Something that I have vowed not to do.

Explain? Yes. Defend? Never.

Now what do these three cases have in common?

Obviously the diagnosis of autism is the connecting factor, and the fact that they have all had associations with the legal system.
Twitter guy was out of work, depressed and got drunk when he did the things he did.
Gary McKinnon only received a diagnosis after a viewer saw a TV interview in 2008 and contacted his lawyers saying he should get checked out. After 6 years of legal proceedings, he received an official diagnosis compounded by clinical depression.
Matthijs took his own life because the world as he knew it did not exist anymore. Depression was also a part of his reality for which he took medication.

As I'm writing, I'm starting to feel quite uncomfortable.

(And yes, I am going old school and am using a simple pen and paper! My local bookstore/café has decided to ban all laptops, see text:

'Nope, no WiFi. This is a place for talking and drinking coffee. Please leave your laptops in your bag and take a break. Say hi to your neighbour. Emails can wait'

Auti-friendly or what? I did state the fact that there was no other customers and therefore had no neighbours to talk to; to which the owner replied,'what about your dog?' He has a good sense of humour. I might have a chihuahua, but I am not one of those freaky people that have monologues with their dogs! :-) Pen and paper it is then!  )

But back to feeling uncomfortable. Why is this feeling bubbling under the surface?

A lawyer will use anything that will help his or her client. A diagnosis of autism apparently seems to encourage the use of diminished responsibility.

This raises questions in my mind. Should a person with autism be seen as different and therefore be judged less severely having committed a crime?

I argue in my lectures that people with autism should indeed be viewed as different but not less that someone without autism. However, I also do argue that everyone should be seen as different.

There is no 'normal'. That is, in my opinion, an illusion people create to feel safe.
There are however accepted behaviours and rules that the majority have to abide by.

So if I agree that people with autism should be judged differently, what then makes me feel so uneasy?

I think it is because I see the next logical step. Let's take a hypothetical situation.

Say there's a woman who has no official diagnosis but knows she has autism. Her life is perfectly organised and she is fully in control. She does not need to acknowledge her autism, because in her opinion she doesn't experience any problems related to it. After all, if someone is totally independent, can design their life to the tiniest detail, is self employed and has a supportive family, why would they need a diagnosis?

But then she becomes involved with the legal system and her lawyers tell her it would be to her advantage to have a formal diagnosis. She follows their advice and does so.

A step further has been taken. The person has effectively used their diagnosis to their advantage. Whether this did effect her behaviour or not, the important concept is that the person does not believe this. Fortunately I have not heard of this happening in reality, but it seems only a matter of time.

I see a dangerous parallel to daily life. I will never use autism as an excuse for not having done something, or for having done something for that matter.

It can be a reason, but never an excuse.

Why you may be asking?

Because this opens up a massive squirming can of worms. If someone with autism manipulates their surroundings and uses it as an excuse, you set a precedent for how the surrounding will judge the next person with autism that comes along.

Maybe that next person has not got the ability to verbalise their thought processes and so they are judged unfairly. Or as the judge in the case of Matthijs said, they will be seen as 'hiding behind their autism.'

None of us can afford to encourage this way of thinking as it is
not only for our own good, but for the good of the next generation of people with autism.

Home 2011

Home
A place of safety, a place of peace,
a place where I can finally find my own release
of the feelings I have which scare me so much,
the ones I hardly ever let touch.
The silent watcher, inside of my mind,
the one which I let nobody find.
Pill popping, a daily theme,
pushing down the screaming pain within,
Asking myself the question of life,
Is it really worth it, this daily strife?
But then I look down at their golden eyes,
My silent friends, the ones that are always there,
that in their own way really do care.
What to do to make myself feel good?
I would do all those things if only I could,
One day I know, that time will come
until then, I'll wait, and just try to have fun.

Autism and Art

I recently watched a documentary about a young girl of four called Marla Olmstead and her almost prodigy-wise ability to paint at a level that did not fit her age. I watched with disbelief and a great deal of skepticism. Something in the documentary struck me in a more profound manner than her ability to paint in a way far beyond my means.

An art critic spoke about the concept of Modernism and how we often react to artwork in that category. He said that unfortunately, if a piece of art does not seem to explain itself or is transparent in what it’s trying to achieve then the art is often seen as inherently bad. It is the work of art’s fault that we don't understand it, not our own. 

This struck a cord in me. I have never heard such a beautiful analogy of what people with autism so often have to cope with in their lives. If the person with autism cannot explain themselves, or are not transparent in the way the viewer expects or demands, it is often seen as the persons' fault. Not the viewers'.

I experienced my diagnosis as a blessing with the positive aspects massively outweighing the negatives i.e. people often see the term autism as a label. I have always felt different, as if the world was not made for me but have always known that I would find the answer to why I felt this way. I have of course had my dark moments, like so many others who get a diagnosis later in life. Those moments will never leave me. I will never be able to forget. But, I do not see this as a bad thing.

They help remind me of how strong I am and how I should never accept anything less than what I am capable of.

As an artist, these moments only help to color my work. They have helped me reach greater emotional depths within emotions that none of us really want to have to face in life. As I progress with my artistic development, I find myself asking the question that many artist's ask themselves; how does my creative process work and is it any different to that of other artists'? However, my question now has an added dimension to it; the dimension of autism.

How is my creative process different to that of an artist without autism?

My brain is wired differently, that much is almost certain within the medical community. Could this be my answer? I don't think so. I think that this is almost a necessity for someone who aims to be an artist! Whether it be on the level of actual genetics, how you choose to interpret the world or how your mind chooses to see it.

I don't want to go too deep into the semantics of it, but needless to say, you view the world in a different way and feel the need to communicate this 'other' view.

I suppose I could say I don't have a choice in how I see the world. There is no on or off button that I can use when details almost physically jump out at me (not handy if ​you're already vertically challenged!) or when the sunlight gets too bright. But then I'm sure if the artist Edvard Munch was standing over my shoulder he would debate this with me. Pointing out that when he experienced the moment upon which 'The Scream' is based, he had no choice but to hear the scream of nature as the sun was setting during an evening walk.

So if it is not my brain’s wiring or my choice in how I see the world, what could be the difference...if any?

What do I use to facilitate my creative process?

Music!

When I am in my studio, working through the hundreds of images I have shot and selecting those that have most potential, I often listen to music. And recently, I have become aware of a certain pattern in how I go about my work. Depending on my mood or on the emotion I want to convey with the image I am working on, I will play music that will call up that required emotion. Now we are all aware of how music affects us; good or bad, happy or sad.

But I seem to have taken it a step further. Emotions are frightening, weird, unsure random concepts that can be good and bad all at the same time. Or at least that's what they are in my world.

How can I then imbue my artwork with the emotion I want it to convey?

By playing music that will open up the door/s to that specific emotion or collection of emotions. The depth of the image changes through the emotional depth the music calls up in me.

I do not dictate what the end result is going to be, but I am actively seeking to control in some small way what is going to come out of the creative process. This is something that many artists try to do.

My autism is therefore enabling me to achieve this in an almost intuitive and effortless way. Now if that's not an advantage of having autism, I don't know what is!

Rather no help then bad help!

The words I've chosen to use in the title of this blog entry might cause alot of disagreement and/or discussion.
Good! That is exactly the right thing to be doing when deciding on whether you can support a statement someone is making. I have met so many people with autism, young and old, where receiving the wrong help has meant the only option left open to them has been to close themselves off for all help, good or bad.
Receiving bad help is damaging to the extreme.

I think that there is one essential thing that people without autism often forget, even the very best of health professionals.
Opening up to someone about the difficulties you encounter in life, whatever they may be, is not the same as someone talking about their daily problems. It's one thing to experience them yourself but quite another to actually verbalise them. Turning those thoughts into words make them even more real then they were before.
We all know the saying 'admitting you have a problem with something is the first step'.
I disagree with this in my case and for many other persons' with autism. The first step was going through the pain of not knowing what the hell was going on.
Getting to the stage where you actually verbalised your thoughts is equivalent, I feel, to abseiling down a cliff.
Why you say?
Well, you know how hard the rocks are beneath you as you've experienced falling over before. The cliff face is just as hard, easy for you to cut your hands on whilst trying to find a safe way down. Then think of all those rocks that looked so sturdy and safe that you thought could be used as a handhold, but who crumbled under your touch.
Last but not least, the rope. Something that looks so delicate and yet can support so much; assuming that it is going to function like a rope should function that is.
The key to getting down that cliff face safely is the rope.
What if it had been overstretched? What if it had been called upon too many times and had started to fray?
What if the rope was the wrong rope for the job but wanted to help so badly that it ignored the feeling?
Health professionals are our ropes and yet if they fail us, even with the best of intentions, the results are potentially the same. We crash onto the rocks, pick ourselves up and vow never to go abseiling again.
Yet we might miss out on an amazing future experience because of a previous one they went wrong. Worse of all, the next person who wants to help is going to have to move mountains to get him or her to trust them, and that's before you even start the process of helping someone.
Just getting them to the top of the cliff is a journey in itself. In this society, where everything has to go so quickly (including in the health profession because time is money and there's only going to be less of that in the future!), who are the ones going to suffer?
Maybe we need to take a step back and just take a moment to realise the enormity of the task at hand, as health professionals, family members and people with a diagnosis.
So yes, I'd rather have had no help then bad help. Thankfully I haven't had much bad help, but I'm still working at reversing those effects years after it happened. What a waste of my energy. Energy I could have been putting towards achieving my goals.
Then again, you learn from everything in life and I wouldn't be the person I am today had I not experienced bad help.
I am however relieved that I didn't have to go through that much of it!

Thankyou to my auti coaches, Dick and Pien for providing the best guidance I've had yet.

Autism and dog training classes

This evening was my weekly dog training class. A wonderful time to spend with man's best friend...a wonderfully frustrating time!
When I decided to say yes to giving a home to an 8week old chihuahua, I made a conscious decision to enlist in the nearest puppy class. I had met too many nasty or pathetically afraid chihuahuas to not do this. I knew how important early socialization and training was for dogs of any size, let alone mini dogs with a mind as stubborn as a block of cement!
We completed a year long course and she did brilliantly. I, however, did not do so well. The key words told to the owners were repetition, be consequent and patience.
Now repetition and consequence are words I know!
Having autism is definitely not a bad thing in this case as following rules set out by animal behaviorists, doing the same thing repeatedly and always being consequent is natural behaviour for me. Why would a dog learn something without me teaching her in a way that works? Why would she remember which behaviours link with which words if I didn't use the same word every time? Simple questions with obvious answers but ones we animal owners more often than not forget.
Then we come to the last word; patience. Teaching a human or animal anything requires patience. Teaching a dog means first learning their language. That's the start of the great journey of patience!
If the most of us were truly honest, we would acknowledge that we rarely take the time to learn this language. Humans are unfortunately not known to be that blatantly honest most of the time which is a great pity.
The second leg of the patience journey happens when our little monsters hit puberty (I'm talking about both humans and animals here by the way!). A wonderful time where we have to hope that the lessons we taught them in the beginning will eventually resurface once the hormones have calmed down.
Kaya and I have gotten through this stage for the most part I am thankful to say. Now the third part of the journey has started...I decided after a break of just under a year that we both missed the classes, but she wasn't a puppy anymore so we had to find a new class.
Then we found it! Where could we both have fun whilst getting some exercise and meeting other dogs? An agility class! However, before starting in this class I had to start off in the basic obedience class before taking the test.
To my shock and dismay, I realised that I had fallen short of what I had expected of myself as Kaya's owner. I had become lax.
She would sit brilliantly for the allotted time, weave in and out of cones whilst following me to heel but then we came to the lie down (and stay for 1 minute).
I tried and tried but she just would not do it.I then realised something. She had learnt to lie down in the summer time, when the temperature was warm, the grass dry and the days light. I now go to evening classes so it is not only dark, but it's cold and usually wet.
I am sad to admit that I was ashamed of her behaviour in the beginning and got frustrated very quickly. Today was my first time back after the Christmas holidays and I vowed to do things differently. I had come to the realisation that patience was to be my personal challenge.
So I took a deep breath, changed my attitude and changed the reward I was giving her.
This all worked! Tonights class went brilliantly and both Kaya and I left with our heads held high.
Again, the world has chosen to teach me a life lesson through my dog.
'Be patient, with others and yourself.'
Another month and she can take the test and hopefully by mid February we'll be taking part in the agility classes. Patience will be my new middle name and I'll have learnt another valuable life lesson.

Dogs, legs and chocolate

So, what do dogs, legs and chocolate have to do with eachother?
Well as I have nerve pain in my leg chocolate can sometimes really help to give my brain some happy endorphines. But dogs and chocolate don't go together as we all know...you can maybe see where I'm going with this. My small chihuahua Kaya managed to sneak a taste of milk chocolate for the first time this Christmas which gave me a shock. Luckily this wasn't enough to have to go to the vets.
This evening I came downstairs and saw an empty packet of chocolate lying on the floor with a very happy Kaya sitting next to it. I had left it on the kitchen table and had not even thought a dog that size could reach it. Never assume anything when it comes to dogs, their sense of smell, a chair and chocolate. Maybe one of my 3 cats made a deal with the devil to get rid of the damn dog (in their thoughts!) or it was just chance that they knocked it off. If not, then that mi.d means she jumped onto the kitchen chair to reach the table.
This is an amazing feat considering I have laminate flooring and she slips and slides all over the place so doesn't even dare to jump off my lap if I'm sitting there. I can definitely say that she follows the example her owner sets when she goes after something she wants!

20 minutes later we were at the vets and a €1 chocolate bar turned into a €58 one!
Poor Kaya got stabbed in the bottom with a nasty vomit inducing injection and within 5 minutes was heaving all over the vets floor. 20 minutes later I was driving home with a very sorry looking doglet who then installed herself in her bed once home.
She has now emerged from her bed and is looking much happier and refreshed.
Her owner is left swearing off chocolate which should help the weighing scales for the new year!
One other good thing that has come out of all of this is the fact that the adrenaline has helped to reduce the pain for the time being. And never make assumptions as they make an ASS out of you!

First Attempt!

Good morning to my as of yet non-existent readers!
As this title says, this is my first attempt at blogging. Maybe a strange thing to be saying in this day and age...'what?! You've never blogged before!' you may be thinking. I never really saw the point to be honest, and the big question- what have I got to say?
Now that I am writing articles for the autism Looking Up magazine edited by +Adam Feinstein I realise I do indeed have something to say. 'What?' you may ask. Well that is something I can't write down in black and white at this time.
You see, I am still on that journey of discovery. Maybe this blog will be a written account of this journey?
So I will keep it short and sweet. Welcome to my thoughts, memories and hopes.