Published on 12, July, 2020
I've just written this to put on FB for my friends and thought perhaps I should share it here too (although I have a slight fear that it starts a whole hoo ha, so please don't do that). The last line applies to you guys as well :). This is what I wrote:
It's a year today since I was diagnosed Autistic - an anniversary but not a birthday.
So what difference does it make?
It makes none... only it does for me, so in no particular order, 10 things I've learned/realised in the past year:
1. That I need to be kinder to myself.
That I need to say "no" more often, that there are things I just can't fix. I'm not very good at any of this stuff yet.
2. That I've always been autistic.
3. That in my view (and legally), autism is a disability, some people disagree.
I think this risks people (myself included) not getting what very limited support there is, either now or in the future. It's not a superpower either (even if it were, every superhero has an Achilles heel).
4. That the "autistic community" is at least as contentious as every other.
5. That it's ok to ask for help. I could have before, but now I feel I can.
I'm getting reasonable adjustments put in place at work, hopefully these help me be less stressed and more productive - benefitting not just me, but my colleagues and the business as a whole.
6. That, imo, we should ditch the terms spectrum, high/low functioning or support needs and Aspergers.
These are all outdated or unhelpful terms. The jigsaw piece can do one as well, I am not missing a piece, I'm put together in a different way.
7. What I need varies from day to day and one situation to another.
I can't speak for other autistic people and many have co-existing conditions, so it's complex.
8. Certain evidence suggests autism is genetic, so you're more likely to see certain behaviour as "normal" if someone else in your family is autistic. There isn't really any such thing as autistic traits or behaviour hence why diagnosis is difficult and a lengthy process.
9. That women, LGBT+ and ethnic minorities are under diagnosed.
10. That the core of me hasn't changed, I still care, I'm still me, passionate about social causes for example.
I don't lack empathy but I can struggle with emotional reciprocity - this means I'm sometimes seen as intense and struggle with small talk, it can take a lot of effort, please meet me halfway.
Thanks for listening and thanks for being there x.
Hi Joe
I was diagnosed last summer and much of what you posted resonated with me. Can I swipe your list, tweak it and use it on my anniversary? Or perhaps on the eve of my next birthday?
How open have you been about your diagnosis on Facebook?
I made a post not long after my diagnosis and very briefly mentioned I'm autistic but I think most people missed it. I've been very selective about who I've disclosed my autism too. I only told my daughter a few days before my assessment (and she had been diagnosed the previous year and started the whole - mum that's not "normal" it's an autistic thing conversation that led me to understand!)
Most people seem to think that I can't be autistic because I appear so "normal" One person who I thought was a friend now no longer appears to be a friend as we've not met up since I disclosed my diagnosis. Another person said oh no. That's sad! Like I suddenly became a different person!
I think that this year I will make it my business to be more open about who I actually am.
Inula