07 Oct 2019 in persoonlijk

I am an autist vs I have autism

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4 mins

Identity first autism

Which is it? Do you have autism or are you an autist? The choice is pretty clear to me; I am an autist. Autism is a part of who I am. It determines who I am as a person. There are more things that determine who I am as a person; I am a man, I am a Dutchman, I am a father, I am a realist and so on.

What is the problem anyway?

These days it is “in” to be politically correct. We try to hit as few people as possible and, above all, we don’t want to hit people. We see plenty of examples of this in our society and world pasture. And then this kind of “discussion” comes up again. Is it now “wrong” to say that people with autism are autistic? Should we not do that because it puts the disease at the center? Because about people with another disease such as cancer, are we better to say that it is a person with cancer?

And that is the big problem for me. Because indeed, about people with a disorder or illness, we prefer to say that it is “a person with X”. But at the same time we are not saying about a man who loves men that he is “a person with homophilia”. No, you really can’t! That is a homosexual and it is even perceived by some people as “homophobic” to say it differently.

For me, having autism is what is an established fact. It is not a disease, disorder or something that you can solve. It is part of your person. It’s a part of who I am. It is, just like homophilia for example, something that has no “cure”. And in my eyes many of the problems of autists are caused by the fact that the world is not designed for us.

May I not say “person with autism?”

First, it is a free country, you can say what you want. But in my eyes, and in the eyes of many autists worldwide, you use the wrong term. And what you actually want to say is that the autism part of a person is “wrong” or matters less. I understand very well that it is meant as something positive, but many autists already have a hard time accepting themselves as they are. Being autistic in a world that is not autistic is very difficult and difficult. We run into all sorts of problems, we need help to function “normally” in our existence together with neurotypic people.

In my eyes, saying “person with autism” is a sign of someone who is either not an autist or someone who has not accepted being one. In the past I have done this myself. However, since I have accepted myself as I am, with all the pluses and minuses that go with it, I feel much better calling myself an autist.

Yet I also sometimes talk about “someone with autism”, in some sentences this concept runs better than “autist”. However, when I speak about myself I always try to speak about autist. Or as someone with Asperger’s syndrome. I often do the latter because in my environment I often hear “autism is a spectrum right?” and with that I try to indicate where in the spectrum I am.

But it is autism everywhere on the spectrum. The shape certainly does matter, but it is (certainly with the DSM5) all autism.

In the autism community itself

Grenzen, de jouwe of de mijne

There are also different points of view within the autism community itself. There are those who support my position and say that autism is such an essential part of us that renaming itself can be harmful (especially in English)

There are also those who consciously take the position that they have autism and that they are not autists. That their autism did not determine who they are as a person and they think that autism has a very negative taste.

And finally there are people who don’t care or use the terms interchangeably. People who see no harm in either and use it as it fits the situation.

For all views of what to say. And let me first state that it depends on the person you are talking to. After all, we live in a free country and can find what we want for ourselves. And I would like to be described as an autist. And not as someone with autism. I don’t have autism, I am an autist.

Thanks for reading
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Tags: autisme 
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David Westerink
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I am David, born in 1984 and I have Asperger's syndrome.

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