‘You don’t want your autism to define you’

That was a piece of advice a fellow autistic from one of my Facebook groups has been given by a neurotypical family member after being diagnosed. She didn’t know what it meant, I bet it was just a neurotypical way of saying ‘I hope you’re not going to change too much now, after you’ve been diagnosed’. It’s really hard to say for sure though and I do admit I read too much into things after the experience with Home Group.

However, I feel like I understood today what it meant for me – that is exactly the last reason why I don’t feel comfortable recording pieces from my blog for the radio, even now, after getting over my fear of the recorder. I don’t want my autism to define me. I don’t want to be that person who constantly talks about autism and how it affects me. I do it on the blog already and really do not fancy bringing the same thing to another medium. I wouldn’t mind giving an interview about it but it would have to be one off and apart from that I want to do normal things, the same like other people do, for example interviewing others.

So yesterday I finally came up with the idea of what I wanted to do for my own show – I’d like to interview ordinary people. Is the fact that we’re living not enough of an achievement to give it some attention? However when I shared the idea with Shirley today I was redirected to interviewing people who work for a local charity. It could certainly be an interesting piece and I already gave it some thought (probably not enough considering interview is a form of communication) but what I’m worried about is that no matter what I do I won’t be very good at it. I was never good at talking to organisations. I was good at talking to people who have the freedom to be themselves.

I will see how this will go. It’s still an experience though so I want to give it a go.

I am writing this post from a shopping mall in the cente of Swindon. I stopped here on the way from the radio and after getting my groceries from the Polish shop.

I didn’t want to go to a cafe because cafes put far too many calories into their drinks. I need to change my eating (and drinking) habits. It’s a bit noisy here, but then I don’t want to go home straight away, it’s too boring. Thankfully I’m going to work tomorrow for an early shift so when I lay down on the sofa in the afternoon I’ll at least know that I deserve rest.

Oh, BTW, I discussed with another volunteer how I should approach that interview with a charity and he gave me an example how he interviewed an Ukrainian lady who lives in Swindon. And I pointed out this is completely different type of communication because the social expectation for that lady was to show her true feelings and the social expectation for people who run any organisation will be to use the interview as an opportunity to build their professional image so they will be behaving differently. I presume neurotypical people could transfer experience from one of those settings to another but I wouldn’t be able to, for me that is like totally different thing, which then could be misinterpreted by people as me being daft.

I also spoke with a mum of another volunteer who’s also autistic and she said she doesn’t like the term ‘autistic’, she prefers ‘has autism’ because ‘autistic’ means to her like all the bits about this person are autistic. That is an interesting view, maybe I should ask her to elaborate on that? I’m not wanting to write too much about how I understood it in case I misinterpreted something, but I guess as a mum to an autistic person/person with autism she should have her say.

I actually quite liked the term ‘Asperger syndrome’ but then people started pointing out that he was Nazi, so that’s not appropriate. I don’t mind ‘having autism’ but I wouldn’t like to be ‘living with autism’ as that sounds like if everyone was hoping that one day autism will fall off and I’d finally be normal. Which to be honest wouldn’t be a bad thing. At least that’s what I’ve been thinking the last couple of days. I’m aware I’d become completely different person then, I’d most likely won’t be able to do my patterns anymore, keeping a blog will also not make any sense but I’d like to see how it is to be neurotypical, you know? If only because I spent so much time analysing myself the last couple of months that I’d like a bit of a different experience.

But because I can’t become neurotypical I would at least like to live a life where my autism doesn’t define me.

2 responses to “‘You don’t want your autism to define you’”

  1. The whole person-first language seems weird to me. Calling someone blond or tall or intelligent doesn’t mean that’s all they are and all they ever will be to the end of time, so I’m not sure why people think calling someone autistic, mentally ill, or whatever else suddenly means that’s the entirety of a person’s identity.

    Liked by 1 person

    • You know, I never gave it much thought really. I just went with what autistic community is saying. I personally don’t have any preference, ‘autistic’ doesn’t have any extra meaning for me over ‘having autism’.

      Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: