Tuesday, 24 September 2013

GOT MY DRIVER'S LICENSE!!! And an update


I kept screwing up, because I had terrible failing anxiety. Then I got myself an exam where they took my failing anxiety AND autism into account (they actually got someone from another city for me, to accomplish that. Isn't that nice of them?) and it helped a lot.

I'm allowed to drive in my parents' cars (my dad's work-car and our own) and I've already driven around in them for quite a bit around town, so I can get used to driving in another car. I'm slowly easing into it.

Getting my driver's license is a very big accomplishment for me. Of course, it is for most people, but there's an extra reason for me. I first started driving lessons with another driving instructor. This woman said she was skilled at teaching people with autism to drive a car. Well... She clearly wasn't. She had me do almost everything in a very short time span.

Then she told me that I had to fill in this form (Eigen Verklaring), in which there are several questions. One of them is whether or not you've ever been at a psychologist and/or had therapy. Of course my answer is yes. This form actually cost me 22 euros. (yes! For a piece of paper!) After that I would be summoned for a screening at a specialist, which would cost me a lot of money too. If he would find me fit to drive, then I would still have to do a medical driving test. IF I got through that test, THEN I would be a allowed to take my exams. Even then I'd just get my driver's license for 3 years max. (This will change starting the 1st of October! I didn't know that back then though) At the end of this all, I would've spent somewhere between 200 and 300 euros and still not be sure whether I'd be able to even get a driver's license or not.

I told my instructor that I thought that was horrible. A lot of people, including me, who even qualify for such a screening, are also in government profit. This means that they won't have a lot of money. Still they want those people to pay that much, just to know if they're even qualified to take their exam or not! And this is being forced upon them. If they want to drive, they will have to pay that much and still not be sure if they will eventually end up with a driver's license.

My instructor sympathised and she told me that I should just stop my lessons until I had gone through my medical driving test. Then, if I wouldn't get through the test, I wouldn't have spent that much yet. I asked her if I would be good enough for the test with that few (7) hours of lessons. She said that they would adjust to my level, that they just wanted to know if I had what it takes to even get on the road. Not how far I was in my lessons.

Relieved, I went through the whole progress (feeling my wallet getting lighter, metaphorically speaking). At the day of the medical driving test, I was told I had to drive there myself with a car that I had to rent from the driving school. Suddenly I was told I had to have the skills to drive the whole car myself, so I had to practice that by driving to the test myself. I asked how for God sakes they could ask that from me, seeing as I had 7 hours of time spent on the road, and there was a lot of time between those lessons and the test too. The instructor told me she couldn't remember having told me that I should stop taking lessons and that I had to face the consequences now. Like, seriously? I wouldn't just stop my lessons for fun, knowing that there would be a test, would I?

Well, I probably won't have to tell you that I dramatically failed my medical driving test. How was I to make it while having to control things I never learned to control?
I explained the whole situation to the man who was testing me, but my instructor kept insisting she never told me to stop my lessons and the man believed her and told me that it didn't matter anyway. He said that he could see that I couldn't divide my attention (ever tried to do several things you never did at the same time and tried to divide your attention between them without making a mistake? You'll fail. If you don't, you're probably a genius) and that if I can't divide my attention between my car and the rest of the world, I wouldn't be able to drive. He advised me that I would be better off in an automatic car, instead of driving stick.

I told the man again that I only had 7 hours of lesson time, which isn't enough for me to understand everything enough to divide my attention between them, but that I was sure that when I understood them, I would be able to use everything with much more ease and divide my attention.
The man and my instructor looked at each other and me and shook their heads. I kept insisting that it might even take me a year, but that I would make it. The man said "Well, a year half a half maybe! But even then I doubt it... I think you should try automatic and even then I can't promise anything..."

Isn't this a very grim outlook? I should drive automatic and even that wouldn't be sure...
I asked my instructor how she could think that she could teach someone with autism how to drive a car. Her response: "I have had other people with autism and they did fine..."
Wait, that was her proof? People, memorize this sentence please: "If you've met one person with autism, you've only met one person with autism."
I got angry and resolved. I went out to find someone who was ACTUALLY qualified to teach a person with autism to drive a car.

One day I was asked to show my talents at a table at an autism information market. I was in one room with three other people. One of them was a nice woman who was a driving instructor for people with autism!
I wasn't to be fooled again, so I asked what made her qualified to teach people with autism how to drive. She told me she actually had a 'Ster-opleiding' which would literally translate to a Star-education, which is an education to teach driving instructors to teach people with autism how to drive. She told me about the different techniques that she used and what an average lessons would look like.

I was completely amazed and knew that she was the right person. Just one thing... She only teaches how to drive stick. Not automatic.
I didn't care. If anyone was to drive me stick, it would be her. I took an introduction lesson and after that I immediately knew that I had the right person. She also told me "I have no idea why they told you that you wouldn't be able to drive. Nonsense. It won't be easy, but you're very fit to drive."

When I re-did my medical driving test, I happened to end up at the same man who tested me before. It had to be faith. This time I was fully prepared and I aced the test. I can still remember the look on his face and it still makes me smile.
I got through my theoretical test in one go too (I did take an individual test).
I didn't get through my exams in one go, but that was mostly due to my failing anxiety. The moment I got a failing anxiety exam, I aced that one too.

Everyone reading my blog: If people are telling you that you can't do a certain thing based on ridiculous assumptions, and you're sure that you can do it: Do it!
"Then what if I still fail?" Then at least you know for sure now and it won't be a 'what if' situation. But what if you DID make it? Then you wouldn't have someone else telling you what you can and can't do. The person who knows that the best is you.
Advice is a great thing and take it to heart, but nobody can tell you what you can and can't do. Decide that for yourself.

As for the update: I got the help that I needed to fill out the form to apply for the money to get the right guidance. I got all the information written down now. It just needs to be made in a good story. Suprisingly, I can write blogposts, but I can't make this story right... People keep telling me I have a low chance of getting this indication, seeing how strict the rules are now, and now my failing anxiety is acting up again. I fear that I write something down wrong and I cheat myself out of the right guidance. This makes me lock up completely.
My psychologist promised she would help me get through that, so next time I'll be bringing the form and all the information to her and we'll be working on that together.

So yea, I'm making progress. Slow progress, but progress nonetheless.

Thursday, 20 June 2013

A mess

Hey everyone. I know I keep promising to update my blog more often and then I don't. I'm sorry. It's because my head is such a mess. I'm all over the place. So I'm writing this on my mobile phone, in bed. No obligations in bed.

Life is just getting too confusing for me and it's making me lose track of so many things, even my physical therapist has begun pointing out things in my life that I'm forgetting. No I'm not talking about excercise. She actually remembers who I said I'd call better than me.

This is partly because soon I'll take my driver's exam for the third time and this many exams is draining my money.
But mostly it's because... well... I'm growing up. And I don't seem to cope with it as well as others seem to do, because of my autism and chronic fatigue. I need guidance in finding a living place for my own, for managing my house, managing finances, managing my household, etc. I also need medical care for my chronic fatigue. There are special budgets for people who need that much care. I've been trying to figure out how to get it for a year and a half. I've been to a lot of organisations for that.

I seem to finally understand what papers I need... But I don't understand the papers. I asked the guiding-organisation which I want to hire once I have that budget. They told me I need that budget first before they can help me. It's weird: I need guidance to be able to finance my guidance!

There actually turns out to be an organisation who provides help with such things for free. Yay! So I called them. They said they could come over, but needed some papers from my psychologist first (not the diagnosis paper. I have that. Other papers). I asked my psychologist. She explained to me that the organisation was wrong. They didn't need those papers.

Now I have to call back the guiding organisation to tell them my psychologist said they were wrong.

Oh and all this is just for papers to get an CIZ indication, which apparantly is just something you need in order to be ABLE to apply for the budget I need. So I need help with applying for that too.

Everything in adult life is so confusing to me, that I need help. In order to get that help, I need a budget. In order to get that budget, I need help... and apparantly that help is getting me the wrong information too!
So tomorrow I'll call that organisation again and see what they have to say.

Hey people in Health Care: why are you making people with autism run from stranger to stranger, and overload them with complicated information, in order to get the help that's supposed to make life a bit easier?

Sunday, 5 May 2013

Answering two question - Second

In my absence from my blog I have had two questions from two different people. I’ll try to answer them as well as I can. Today I’ll answer the second one. You can find the first one here: http://thedailydaysofanasperger.blogspot.nl/2013/05/answering-two-questions-first.html

When can we speak of an ‘overload’?
This is a terribly difficult question, which I have been thinking about for a long time. To me, this question needs two answers. First, I’ll have to define the thin line between simply being bothered by any kind of stimulation and actually having an overload. I’m not an expert, I can’t measure brain activity and I have no idea if my definition of this thin line is the same as someone else’s. So this will just be my interpretation.

The second part of my answer will need to be an actual definition of an overload. This answer has the same problems as the first. I’m not an expert, I can’t measure brain activity and I have no idea if my definition of an overload is the same as someone else’s. So this, too, will just be my interpretation.

Before I answer this, I have a question for my readers too: Does anyone know if there’s some accurate scientific research on this, so we can define this by science instead of just my point of view? If there is a research on this, please send it to me, or tell me where I can find it.

Now, as for the line between simply being bothered by stimulation and having a complete overload. To me, this is defined by the moment where (any kind of) stimulation makes you incapable of tuning it out and bothers you with other activities up to a point where every fibre of your being is telling you to either get rid of the stimulation somehow, or get out of there. When I say stimulation, I mean anything that’s bothering your senses. Being it sound, touch, sight, taste, smell, etc.
The moment where you feel the stimulation affecting your performance with anything, then that might be the first sign of an overload coming up and you should probably search for a way to get away from the stimulation.

Then there’s the second, and hardest, part of the question… A definition of an overload. Now, how do you define something that you feel? It’s like having someone, who never felt hunger, ask how hunger feels. I’ll try my best, though. I’ll try to do it in such a way that even someone who never had an overload, may have a sense of what it’s like. Even though I don’t think anyone will ever really get it without having had an overload. (note: Overloads aren’t just for people with autism. They just tend to have them more often and sooner.)

Ever had 3, or more, people trying to get your attention? You probably couldn’t follow any of it and yelled out, frustrated, something along the lines of: “One at a time please!!!” Such a moment is close to what an overload feels like (and also the reason why some people respond with yelling, or fighting, or things like that, to an overload. It’s frustration).

People with autism are usually a lot more sensitive to different kinds of stimulation. Life with autism is life unfiltered. All the different thing in the world enter our senses at the same time. I remember my biology book telling about how people can get used to a sound. It said: “If you put on a radio on loud while trying to make your homework, it will probably bother you. After a while you’ll probably hardly even hear it anymore.” I can hardly relate with this. Some soft sounds I can filter. But actual music in front of me? Nope.

Now imagine walking through a city and hearing all the sounds (I’m using sound as an example here, but any other sense, like smelling a perfume, can cause the same reaction) around you. You can’t filter anything. There’s people talking, cars driving, footsteps, bicycles, doors slamming, road workers, birds tweeting, mobile phones ringing, bus passes and traffic light sounds, etc.

Now you want to buy a sandwich and you still hear all these things, while you’re trying to politely respond to the salesman who’s selling you something. At the same time a baby in the diner decides it’s a good time to start crying. Now there’s the city sounds, a crying baby and a man talking to you, trying to get your attention all at the same time.

This is the same sensation as having 3, or more, people talking to you at the same time. But you can’t possibly tell the city, the baby and the salesman to ‘Shut up! One at a time!” right? So what do you do? You try to push through and end the conversation and having to be at that place as fast as you can. Then you walk out, while being exhausted, but you’re still in the city, which is already too much. Being exhausted from all the noise, the city is too much too. But you can’t tell the city to shut up either! Now you have to go home sooner than expected… You get on the bus, where you can’t even respond to the bus driver’s nice greeting anymore, as all the city noise is distracting you. Your head starts to hurt and all you want is to get to your nice and quiet home…

I hope this story nicely explained how an overload works. It’s not exactly a scientific way of explaining it. The short of it would be: Slowly but surely you have more and more trouble filtering everything entering your senses. This builds up, until you can’t take no more and start to have the basic ‘fight or flight’ survival response. I think the building up is the first warning signal that things are getting too much and that this signal shouldn’t be ignored. To me the moment that you resort to the ‘fight or flight’ survival response, is the moment where you can say you have an ‘overload’. The key is to recognise the warning signals and reduce the ‘overload-moments’.
You probably think “why couldn’t you just explain the whole thing with these last few sentences?’ Because I feel there’s a difference between knowing something and understanding something. The story might help to really understand the feeling of an overload. I hope it worked.

Answering two questions - First

In my absence from my blog I have had two questions from two different people. I’ll try to answer them as well as I can. Today I’ll answer the first one

What are your strengths that most people without autism don’t have?
Okay, first I want to point out an important word in this sentence: “most”. So if you’re thinking “That’s wrong! I have autism and I can do that too!” Then read that word again.

Autism comes with many strengths actually. I’ve answered most of this in an earlier blogpost: Positive
In this blogpost I’ve posted a list that lists a small portion (not everything) of the positives of autism. I’ll repost this list here:
  •  Factual knowledge
  • Logical thinking
  • Great sense of detail
  • Very honest
  • Live in the moment
  • Passionate
  • Very hard worker
  • Very punctual
  • Hyperfocussing
  • Analyzing skills
In the past few days my sister and I have been arguing over the amount of money we raised for the AutismFund. I was sure it was 643 euros. She claimed it was 648 euros. We both stuck to our version of the amount. Happily, my sister took out the piece of paper on which we wrote the amount after we counted it. It said: “643 euros.” She was big enough of a sport to congratulate me for being right. Then she jokingly said: “You and your autism brain! Your memory is too good!”
After that we joked about autism being a superpower and that now I’ll be named: “AutiGirl”
Of course autism isn’t a superpower, but sometimes it can be very useful!

So that’s one of my strengths. Some things (not everything) I can remember in full detail. I can even remember some things from when I was very young. I even asked my mother one day what my memory about being in a stroller and seeing loads of legs and being with an acquaintance was about. My mum looked surprised and told me that was a memory of an expo that she went to with that acquaintance and that I should’ve been far too young to remember that.

I can also hyperfocus on tasks, especially when I really like the task at hand and/or when I have to really concentrate. This can help me go on for hours (usually on the computer, as my chronic fatigue will just stop me when it’s a physical job) and get a lot of stuff done. (This also makes for such long blogposts… So sorry!)

There is so much more, but most of it has been answered in my other blogpost, Positive, which I have stated before. I’m not sure if this has been answered properly now, I feel like I’m missing a lot on this subject. You know what? A CHALLENGE! I want everyone to comment something positive about autism. There’s bound to be a lot that I’m forgetting, as autism can actually really be a superpower sometimes.
Let the commenting commence!

Friday, 3 May 2013

Professional or client?

Lately I’ve bumped into an issue that a lot of experience experts bump into as well. An experience expert is someone who knows a lot about something (usually psychological, or physical problems) because they have experienced it themselves and they try to help other clients and professionals in the caring sector.

As you might have noticed, I’m trying to use my experience to help others as well. I haven’t got an education for this though, so I can’t call myself an experience expert. I’m simply someone who’s willing to help. Because I love putting up events, that’s usually the ‘tool’ I use to help others.
This is very cool to me, as I meet a lot of professionals and get to make a bridge between clients and professionals. I learn a lot from both sides and even learn that it’s possible to be both a professional and a client. The borders between the two are slowly fading, which, in my opinion, is a good thing. This causes a lot of understanding between both sides.

There’s just one glitch here, though. A lot of professionals, as well as visitors to my events, sometimes tend to forget that I’m a client myself. I have autism, chronic fatigue and asthma. These things can be a great help in my life, but also need special attention that tend to be overlooked. People usually expect a lot of professionalism from me. They expect me to meet potential business partners in a very professional way and be strong within this. Not everyone does this, mind you. But it happens sometimes. Then, when I don’t look people in the eye and get all nervous and also have to rest a lot, they get confused and uncertain of my professionalism. Then I have to remind them: I’m a client as well.

Just because I try to make more and more connections in the business world to help move my cause forward, doesn’t mean that my autism, chronic fatigue and asthma conveniently disappear. Meeting new people is still scary. I still can’t look people in the eye. I still have social problems. I still get tired very fast.
But all of this doesn’t just suddenly erase my knowledge. I know it doesn’t make me look like I know what I’m talking about, but I do. My experience doesn’t disappear. In fact, you are experiencing what I live with every day right in front of your nose.

Experience experts usually face the same problems. The separation between ‘experience’ and ‘expert’. Don’t forget their experience. Instead of turning away from them, because they’re not like your every-day professionals, rather learn from them. You get to see whatever they’re trying to teach you about in real life. You get to see what they struggle with right in front of your nose. Don’t turn away, but learn from it. That, to me, is the true strength of an experience expert.

Note: I’m NOT an educated experience expert. I simply made the comparison. I am just someone who loves to use her experience to help others. (I’d love to be an experience expert though. But the only school which teaches this, is a 2 hours’ drive away from my home…)

Thursday, 2 May 2013

I'm back!

Hey everyone! I’m back! Sorry for having been absent lately. My life has been very busy and I simply didn’t have the energy to be thinking about my blog. I’m so sorry.
I have been very busy combining my healing process (medical and psychological appointments, and plenty of rest) with an event that I was putting up: The Game Day. It’s an event where people can play different kind of games all day for free. During this day we also spread information about autism through two guest speakers and an information market, and we raised money for the AutismFund.

This event wasn’t supposed to be taking so much from me, but it did. I was absolutely convinced that the Game Day was cursed. I’m used to things with events not going exactly as planned, but with the Game Day everything that could go wrong in the process of putting up the event, actually went wrong. Getting everything right again took most of my energy. The Game Day, in my mind, just had to be cursed and because of that I didn’t really believe in the event going right anymore.

How wrong I was! The Game Day actually went pretty well. Of course, it didn’t go perfectly. It was the first time we put up something like that after all. But the visitors seemed to be having a lot of fun, the speakers had a great and interested audience, the information market had some very interested visitors, and… we raised 643 euros for the AutismFund!

I am so happy! We had a lot of visitors asking us if we would do this again next year. Before the day of the event itself I would’ve said “no”. Just too much went wrong. But after I’ve seen how much fun everyone had and having had comments from people with autism like “Just knowing where I can find the right help has already made the whole day worth it!” I changed my mind. This is what I did it for. We still have to discuss this in an evaluation meeting and all the people who funded this event have to agree, but as for me? I’m up for another year.
I’m also convinced next year should go a lot smoother, as we’re more experienced now and there are a few companies we can ask to come back next year, so we don’t have to make new contacts for a few things anymore.

Now that the Game Day is done, I got some more spare time and energy left. So I’ll try to update my blog more frequently again.