On the outside of autism

Katherine Rowlands

Just because some people might call me an Aspie, does not mean I automatically agree or get along with everyone I meet who has Autism or Aspergers. In fact, I often find that I have a much harder time dealing with people who I share characteristics with than people who I don’t.

At first, that seems really counter-intuitive. Wouldn’t it be easier to understand and interact with someone who is like me and knows some of what I’m going through? Well, when the characteristics in question are the specific ones of Aspergers or Autism, not really.

Let me explain:

Growing up, if I was talking to someone, I wanted to talk about my obsessions, namely Sherlock Holmes. In the same way, someone else who has an obsession and was talking to me would want to discuss their own interests. This, as you can probably guess, did not go over well.

It is also difficult when you can’t read someone’s facial expression and the person you are talking to can’t understand yours, that’s a big problem. Both of you are struggling, so no one is supporting the conversation.

These are just a couple of examples of why I don’t enjoy attending focus groups for people with Autism, and why I struggle in chatrooms for others who share my challenges.

For this reason, having the brain I do can be a very lonely experience. Especially if you want to make friends, but people who don’t understand your mind, and are socially more able, are not interested in seeing past your challenges long enough to get to know you.

There is also the issue of getting put in a box. If I enter an Autism chatroom or I go to drop in on an Autism group, like the ones at my university, the moment I walk in the door people want to know what kind of Autism I have before they even ask my name. The very people who are supposed to support me, begin treating me in the same way as the outside world, they just do it more openly, for me, this draws a rather disturbing parallel:

We all know that when you’re addicted to drugs or alcohol, if you go to a therapy group, people will stand up one by one and say ‘Hi, I’m so and so, and I’m an addict’. Right now, its pretty much the same if you have Autism.

Why should it be? Autism is not an addiction, its not a disease, and yet this is how it is handled, as though we have something to confess, something that is a burden, instead of a different and wonderful way of thinking and being.

Yes, there are cases of Autism that are crippling. The people who posses this type of Autism require extra help and support, they cannot hold down the same jobs or accept the same responsibilities as a person who is more high functioning, But this does not mean that they are less valuable as people, less important. Autism itself is not a problem. it is – for lack of a better word – the amount that a person is Autistic that can be an issue.

Just like everything else good in life, things have to be in balance. I have never met a single expert who would tell you that a little heroin is a good thing, that being a little addicted to alcohol is fine and dandy. A little Autism, you get Einstein, a lot, you can have some pretty severe learning disabilities begin to crop up. See the difference? They are not the same.

With that in mind, it is important to note that people don’t realize this is what is happening, but that doesn’t help. I have tried to explain it before, but entering an Autism chatroom and telling the first person you talk to that you would prefer not to bring up your Aspergers is not a request that usually goes down well, there seems to be a sense of entitlement, like they feel they have the right to know everything about my medical history.

It doesn’t seem like it should be such a complicated thing, I’m Katherine. Use my name, ask me what my favourite colour is instead of what my diagnosis is, but people who will do that for you can be scarce, or otherwise impossible to find.

These people do exist. It is a normal thing to feel differently from other people you know to have a similar diagnosis to your own.

If you don’t want to have your Autism be the centre of your life, that is your choice. If you don’t want to spend your time working on interacting with others or learning how to appear more normal, I give you kudos for that. There seems to be such a heavy focus on making Autism invisible by dwelling on it all the time.

First off, why should we make it invisible? What’s wrong with being Autistic? Secondly, how is putting all your effort and attention into working on a person’s Autistic symptoms all the time making them feel more ‘normal’? That’s like saying “Yes, you’re a unique person who is not just a ‘disorder’, but nonetheless, let’s constantly treat you like you have no identity outside of it.”

I think a lot of the reason we don’t hear so much about the people who don’t centre their life abound their diagnosis, is because they’re not focused on it. They don’t write about it, they don’t get documentaries made about them…they live lives where their Autism is just one of the many colours they might use in the painting of their life, not the canvas upon which they paint it

On the other hand, if you’re the kind of person who likes having a diagnosis, you feel it’s important to your identity and you like to spend a lot of time talking with others about it and exploring it, that’s wonderful too. It doesn’t mean your diagnosis has to BE your life. There are so many ways to create a reality for yourself where you can have the best of both worlds.

The important thing is that – whatever kind of person you are – you respect other kinds. If I tell you I don’t want to talk about my diagnosis, I don’t need a judgement, I need you to be okay with that. Just as I will be okay with your view of yourself and the choices you make for your own life.

I have friends who are Autistic, and I have friends who are not. I love them all the same, and they care about me as a person, not as a definition in a dictionary. Sometimes when I am speaking to them, and I mention my special needs they reply “I never knew you had those.” even though I have told them before. They think about it so little with regards to me, that they forget about it altogether.

My parents, my brother and my sister, my extended family, all have watched me grow up. In their eyes, I’m still that child and that person that they know from the beginning, before there was all this talk of Aspergers and depression and schools and identities.

That is the person I grew up with too. A person without boarders or boundaries. A person who could do anything.

My mother always told me I was her baby, and that she loves me, no matter what. My father said I was a column of sound. He said if I was made to do anything, it was to sing.

If there is one thing I would like you to take away from reading this blog it is this:

Whatever way you feel, that is the right way to feel.

However you identify yourself, that’s your choice. No one, not me, not your family, not your friends, no one can take that away from you. No one but you gets to decide. I’m here to tell you my own experiences, not to try and influence you in any particular direction.

Aspergers is not the centre of my life, but I wanted to use it to paint a picture for you that might help you brighten up your darkest room.

If ever you have any questions or need any help, I’m here for you, no matter how you see yourself. I know I just said about twelve times that I don’t want to talk about my Autistic characteristics, but I will gladly make an exception as far as this blog is concerned. After all, you already know who I am, and for the record, my favourite colour is dark red.

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