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:

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.