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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