Having autism vs being autistic

Disclaimer: This blog is in no way making factual claims about autistic people, neither myself nor the autistic community. It is meant to spark thought and question my own perspective on the label of autism.

There is a lot of debate around which phrase should be used, ‘autistic person’ or ‘person with autism’. Before I get into considering both of these, I want to make it crystal clear that the ‘right’ way is ALWAYS the way that person wants to be referred to as. It is the autistic person’s/person with autism’s choice how they wish to be referred to.

But, for sake of debate and thought I wanted to dig into why they are different, why the autism community has such strong views on it, and what my (ever evolving) view on it is.

From a grammatical point of view to ‘have’ something, gives the image of us literally having autism, as a separate thing to ourselves. There is no cure for autism because it is not something that is broken in us, it is a difference in the wiring of the brain, and we are born that way. So, purely grammatically, saying to have autism, feels off. It feels like society is trying to segregate it as the broken bit that needs fixing, rather than a part of who we are.

I personally prefer being called autistic as I do think it is an integral part of who I am. I can’t separate autism from me, it is a part of all of my behaviour.

But, and this is the flip side and debate I’m currently having, then what part of me is Rosie? If autism is an integral part of every aspect of who I am, then am I just a product of autism? It feels just as odd to imagine me as a walking talking autism thing.

The neurodiversity movement has the strengths of autistic people deemed as these ‘superpowers’. Is my ability to be a good accountant just an autism superpower? Am I good with numbers because of my black and white autistic thinking or is one of my strengths, as a human, being good with numbers? Do I just try and be a good person because my autistic brain can’t break rules?

Is there any part of me, good or bad, that is just a characteristic of my upbringing and life experiences?

I should be able to be grumpy without it being delayed processing or overload, somehow excusing it with autism. I can be a good accountant because I’ve worked my butt off to get here, often in spite of autism – not because of it. Maybe I strive to be a good person because I have seen the cruel side of life and want to make others happy.

I absolutely agree with being called autistic, but I think there has to be room to say that there are parts of me that would be that way, with or without autism.

So, maybe I don’t think that autism is a part of all of my behaviour? If I am sat talking to my partner, then that is Rosie, not autism. But, if she gets a text telling her to go into work tomorrow, and that wasn’t planned, then I am going to very quickly be defined by autism in my reaction. There will be two parts of me reacting:
Rosie – Okay that’s fine. It’s not my partners fault and she didn’t plan this either. We will figure it out together.
Autism – kjhlskjhgklsjdfhgksjdfhgkjshfgklh that’s not the plan. This is TOO MUCH.

In that moment autism will very much take control and the Rosie reaction will be supressed to a small voice of guilt and shame in the back of my mind.

I can be having an autistic reaction and simultaneously hate my reaction. Is that not the two sides of my mind fighting for control, Rosie vs Autism?

But, equally, I do not think autism is something I have. And I do think autism feeds into all of my behaviour. Is there room for it to affect me, influence all of my behaviour, without defining everything I do and say each day?

Autism is always there. It’s never gone. So, I am in a way defined by it. But also, I am a human, a person with connections, relationships and learned experiences. Am I not also defined by those in the same way?

Is my behaviour in a relationship not equally defined by a lack of faith in the good in people? Have my life experiences of things generally going bad, not defined who I am more?

I don’t have all the answers, and this is something I think a lot about. Where am I in the autism? What does it mean to be me, as a human?

In my opinion neither side of this debate has all the answers. There is some grey area in between where my autism behaviour is something that feels separate to who I am as a person. But, equally, my brain is wired differently and I process the world differently.

My behaviour is affected by being autistic, sure – but there has to be room for free will as a human as well.

Please do leave your thoughts in the comments on my social pages. This is just to spark thought and see what other people’s opinions are. There is no right or wrong answer and absolutely feel free to disagree with any of my points (and each other’s), but please do so respectfully.

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