Monday, 9 July 2012

The need for the right information

Last night I stumbled upon a website page which really frustrated me. It was a website page which was designed to help children with their presentations at school about autism. It was full of information on autism. The information was mostly fine. Most of it was very accurate and a good explanation. Only, the way they said certain things… Very damaging.

On this webpage, they had sentences like “The child won’t do or share things with you. It won’t come to you on its own. It doesn’t want any contact.”
I’d rather have the website say: “The child might have trouble to do or share things with you. It might have trouble to come to you on its own. The child might struggle to make contact or even be reluctant to.” Or something along those lines. In other words, I think the website is too definite in its words. It has more sentences like this. Like: “The child has no fantasy and won’t play any games where you have to pretend.”

These sentences are so definite, like that’s the end of it. They won’t/can’t do that, final. I most definitely want contact and I know a lot of other people with autism who have confessed to me that they’d very much like to make contact, but just don’t really know how. I most definitely do have fantasy! In fact, my favourite genre with books and movies is Fantasy, because I like to imagine all these worlds in my mind. Also, I notice that a lot of LARPers (Life Action Role Play) have autism. Also, cosplayers (comes from the words ‘costume’ and ‘play’, look it up on Wikipedia if you want to know more about it) have a lot of people with autism among them too.

Why would they have these kind of hobbies if they don’t have any fantasy? And why would a lot of people with autism be sad about the fact that they struggle with making contact, if they wouldn’t even want to make contact?

Maybe there are people with autism who have little to no fantasy. Maybe there are people with autism who don’t feel the need to make contact. But that most definitely doesn’t count for all of us. It’s not even that it doesn’t count for a few exceptions of us, but my experience tells me that it is a big number for who it doesn’t count.

Why does this annoy me this much? Surely this is just an annoying and misinformed website and I should just ignore it… Right? Not to me. Imagine that you’ve just heard that you have autism. Your psychologist just gave you your diagnosis, but you didn’t really get much information about it from him/her. (which I think all psychologists should actually give) You’re confused about your diagnosis and start to search for information about it. Now, imagine hearing a presentation with these words, or that you’re stumbling upon this website. You have this diagnosis and you read that with this diagnosis you don’t have fantasy, you don’t/can’t make any contact, you can’t play with other children (the website said this too).

Now, after hearing this, how would you feel about your diagnosis? There is a strong chance you wouldn’t hear much else from the presentation besides these words. You might feel your faith has been sealed. You’ll be alone.

Of course, this is false information. Like I said in my blogpost ‘after diagnosis’: you haven’t changed after your diagnosis, your diagnosis only explains what you were already feeling, so you can work on it. If you really don’t have the need to make contact, fine. But what if you do? Then don’t let these words stop you. You’re still you and you haven’t changed. This is why I get so frustrated when information on autism is this definite in its words. If you’ve met one person with autism, you’ve met one person with autism. Not every person with autism struggles with the exact same things and sometimes it’s also just something you struggle more with, not something you can’t.

Now another scenario. Imagine an employer who as a person with autism as an applicant for a job with his company. Imagine this employer having heard the information from this website. How will he/she feel about this person with autism? I’ve actually been told by an employer that I couldn’t work for his company, because with my Asperger’s I wouldn’t be able to keep track of things. He couldn’t be persuaded to think otherwise. What was I applying for? Making hamburgers and fries in a snackbar. This is what happens when an employer is misinformed.
Imagine the employer, who is sitting in front of this person with autism, telling the applicant he can’t work there, because he has read that people with autism have no fantasy and he needs the person he’s hiring to be innovative.

Whenever an employer asks me what new things I would bring to the office, I always say: “I have autism for starters. This provides me with a whole different way of thinking. Because of this I have a very different perspective on things, so I can shed a different light on everything that’s happening. This can bring new problems, but also new solutions to the table. That’s my strength.” It’s a strength, not a weakness.

Or what about the children in class who are listening to this presentation? They will hear that people with autism don’t want to make contact and that they can’t play with other children. Since they think that person can’t play with them, but also doesn’t even want to, they might think ‘well, I’ll just leave him/her alone then’. What if this person with autism was so desperately trying to connect with his/her class, but was just unable to? And now the rest of the class heard that he doesn’t even WANT to make contact? How will this information help him/her?

Sorry for the terribly long blogpost, but I just feel so strongly about this. I don’t believe this website set out to hurt people. In fact, they wanted to share information, to help people with autism. But they’re terribly misinformed and terribly definite in their words. The even worse thing is, that this isn’t the only website that’s like this. I’ve heard about people getting their information about their diagnosis from these kind of websites and ending up terribly depressed.

I want to fight for providing the right information. I feel it’s very necessary that the right information is out there, so that we can help people to really understand people with autism. If you truly understand something, you can truly start making a difference. From understanding comes hope. This is why I started this blog, but this also why I do all the other things that I do. Starting events about autism, helping out at existing events about autism, informing other people, etc. I still feel I can do more. I think I’m starting to understand how Aaron Likens feels and I’m starting to feel the same. So in some way, this frustration is a good frustration. It makes me want to do more. It fuels my fire in my passion. Let’s all get the right information out there!

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