Lezing over autisme en vrouwen!

Monique Post (@MoniquePost1) tweeted at 4:49 PM on Tue, May 21, 2013: Aankondiging voor lezing over autisme en vrouw-zijn bij Lunetzorg, Eindhoven, 29 Mei, 19.30-21.00.
Iedereen is welkom!

http://t.co/7Ky05FendJ (https://twitter.com/MoniquePost1/status/336856298530418688)

Autismetv.nl

So, tonight is going to be debut for a live online interview for the week of autism.
Exciting! The theme is autism and women, a subject that I am fairly qualified to speak about seeing as how I'm a woman with autism ;-)
I've been collecting views of other women on the spectrum and it has been fascinating to see how everyone has, pretty much, the same view about why autism is often not as easily recognized in women. Why we first get diagnoses focusing on either the consequences of autism (depression) or a wrong diagnosis such as Borderline.
It is frightening to realise that had I first had a diagnosis of Borderline, I would have accepted it. Yet the treatment/s are exactly the opposite to what someone with autism needs.

Can you imagine what state your brain will be in by the time you've gotten the correct information?!
No wonder women with autism have a high rate of depression, especially people who have had conflicting diagnoses!

One of the questions I'm going to be asked tonight is, 'do I think that autism is more of a challenge for women than for men.'
Can you imagine how arrogant it would be for me to say, yes, it's much more of a challenge...It is not worse or heavier, it is different. We have different challenges to men, but I would never say that those challenges weigh heavier compared to challenges men with autism face.
It's easy to think that way though. When you look at the expectations society has of women, the amount of different 'jobs' women are expected to be able to handle and how much we are expected to be verbally strong...then yes, it's easy to think 'we have it much harder'.
But look at what men have to face. Society expects men to not verbalize how they feel, to show no weakness in any area (apart from at home with your partner...talk about confusing!) and be dominant+ successful if possible.
I know a lot of men with autism who are very sensitive, whose emotions are extremely near the surface, who don't like to play the social 'game' (if they see it and understand the game rules that is) and who are fairly timid+ careful.
So no, auti men do not have it 'easier' at all.

Comparing our differences is necessary I suppose when it comes to the science part of how we are different to men...but in daily life I'd rather be looking at the similarities.
When we keep focusing on differences, we don't open our minds to connect on a deeper level. This is a big danger that we have to be aware of as people with autism, but also as human beings.
We need to get over the 'different' aspect, and focus on who the person is. Who the essence of that person is. Only then will we learn to connect to the world around us and care about what happens to others.

There is more in you than you think!

Our world is seriously amazing. Let me start off by stating that fact.

I recently watched an amazing BBC wildlife documentary about whales and the filmmakers who risk their lives to learn more about these graceful giants of the deep. I grew up watching these types of documentaries and the narrating voice of Sir David Attenborough can, even now, still send me back to my childhood days and a feeling of total security.

I love animals and find them fascinating beings. I think I have always felt a greater affinity towards animal-kind rather than human-kind. The words used to define our species felt so wrong to me.

Human-kind? When I begun to realize that I felt different to the outside world, kind would not have been a word that I would have associated with human.

But let me first tell you about where I grew up. This place has had a defining effect on the person I am today. I am the daughter of an artist, Marten Post, who was Head of Art at the United World College of the Atlantic in Wales. I grew up living on a campus where more than 350 students from 16 to 18 years of age from more than 80 different nations lived together, studied together and worked together. Students come from a wide spectrum of socio-economic backgrounds, cultures and creeds and many are accepted based on full scholarships.

The United World College (UWC) movement was inspired by a man called Kurt Hahn, an inspirational educator who believed in the innate ability in each child to make correct judgments about moral issues, no matter the situation they come from. He believed in education which called forth and developed the deepest qualities of character and compassion. After witnessing the First World War, this conviction only became stronger.

The UWC concept was conceived in the 1950’s at the height of the Cold War. Hahn believed that students aged between 16 and 18 would be grounded in their own cultures but still be impressionable enough to learn from one other. So much could be done to overcome religious, cultural and racial misunderstanding and avoid future conflicts if young people could be brought together.

I therefore grew up in an environment where differences were celebrated, compassion and helping others was the norm, your own personal responsibility and integrity was vitally important and where you were enveloped by a sense of idealism…one person can change the world.

The beautiful natural environment I grew up in was my reality. The celebration of being different was my ‘norm’. And then there was the outside world. Whilst looking back and examining my childhood, I realized something vitally important. I grew up in a society which was totally unrealistic when compared to the outside world. Whenever I left the safety of the college walls, say to go to school, I was confronted by a world in which differences were frowned upon and laughed at, compassion was few and far between and idealism was something that was practically non-existent in my fellow students.

At a young age I became very aware of my personal preference for which world I found to be the right one. And then I set about trying to bring some of that world into the outside one. I started up a school newspaper when I was 8yrs old, persuaded friends of my mothers’ to bake cakes to sell to college students and raise money for a local dogs home, and after seeing a children’s’ program about how African children were losing their sight because they could not afford eye surgery, I set up a stand at a crafts fair to raise money for the appeal.

I took to heart the concept of personal responsibility and tried to pass this onto others through my enthusiasm for life.

This taught me that it was possible to help people to care and have compassion for others.

But, I realize that my childhood concepts of compassion did not start off with humans, but with animals. I’ve always had a sense of right and wrong and hate it when I see an injustice happening, especially when the other being cannot speak out for themselves. Animals encounter this problem on a daily basis. We all know that. What I am saying is nothing new.

But I strongly believe that because I grew up with pets and animals around me, I was introduced to this hugely complicated concept ‘compassion’ in a way in which I could begin to understand it. If an animal cannot in the face of wrongdoing speak out for itself, then that is wrong. This concept transfers easily to humanity. If a human being is not able, for whatever reason, to speak out for him or herself in the face of wrongdoing, then that is not right. This may sound too simple, but I find the strongest concepts often are. Sometimes things in life are just that simple.

Compassion for another is one of the simplest concepts of the world, but one which can cause the most destruction if ignored.

So I leave you with a quote from Kurt Hahn, “there is more in you than you think”.

 And remember, one person can change the world. Now let’s go do that!

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.