My experiences around Autism Awareness or Acceptance

 

The month of April is often filled with social media posts about Autism Awareness, Autism Acceptance, and puzzle pieces (or why we shouldn't accept them as symbols to represent the autistic community). It can be hard to know what to think if you are coming across it for the first time, and if it is something you are familiar with, you may be asking 'so what's the point? Do we need this?'

I wanted to share my experiences of coming to realise that I am autistic, and how this realisation transformed my life. And how I have come to not only be aware, or accept it, but embrace it as a part of myself that I wouldn't change for the world.

How it all started

I'm not going to go back to my birth and take it from there, don't worry (!) but growing up, I was aware enough to notice that I didn't fit in, but not aware that I was autistic. This meant that instead of looking for an answer, I blamed myself for being stupid and not being able to pick up on things that other people already seemed to know. Growing up during the 80s and 90s, nobody really thought that girls could be autistic, especially if they were managing academically and didn't appear to have any language delay. Not having awareness of my own needs, and there being quite a lot going on in my family at the time led to me not sharing my thoughts or when I needed support, even in the face of being bullied at school. I took a lot of days off school with depression, unable to face going in. (To this day, I have no idea why or how nobody noticed just how much I missed. Maybe I caught up with the work too efficiently when I came back. Anyway....)

The first hint of realisation

So the years passed and some pretty big stuff happened which I won't go into here. But I think the first time I properly became aware of autism was when I watched a BBC documentary called 'My family and autism'. It was about a boy and his 6 siblings, and how he and his 3 brothers were autistic. It was a really good first insight into autism and what it meant. I had not previously thought about it all that much, but I found it really interesting. 

Beginnings of acceptance

I think somehow that program must have stuck in my mind, because 6 years after it was broadcast, I met my husband. One of the things I said to him very early on in our relationship was that I thought I might be autistic. He was the first person I told who took this seriously, and his response was simply 'Oh, I think I might be too'. No drama, telling me I must have got it wrong, or anything dismissing me. Just a smile and 'Isn't it great that we think so alike?' I was so encouraged by this supportive response that I started to look for things to read which would help me to learn more.

One of the first things I found online was Autistic not Weird. Being able to relate so heavily to so many of the things that were written about made me feel less alone. I also found the page on Facebook, which has a really supportive community of followers. Gradually I realised that there were also groups on Facebook which enabled me to find other people who thought like me. I found books to read which really helped me too, such as Nerdy, Shy and Totally Inappropriate by Cynthia Kim, which I loved. From these sources I read about sensory discomfort, hyperfocus, auditory processing difficulties, socially misreading situations, and a host of other things. I came to realise that my experience of the world was not the same as everyone else's and that the reason that I had been struggling all my life was because of this. I was not failing, I was built differently.

What this means now

My life now is very different from when I was a shy teenager who couldn't work out why I was unable to cope with life. It's very different from the quiet twenty-something who tried so hard to people please that she ended up being taken advantage of so badly. Being a parent has definitely been a part of not only becoming aware of my autism, or even accepting it, but growing into and embracing it as a part of myself. Having a daughter who is also autistic has meant that I have been able to look back at my early years, see myself in her, and take steps to ensure that she knows her worth just as she is. Not that anyone ever deliberately stopped me from knowing my worth, but I did tend to compare myself to others and then blame myself for not measuring up. I have also made sure that she has a formal diagnosis, has help at school that she is entitled to and needs to thrive, and have generally pushed to give her a supportive environment that benefits our entire family.

I think that a combination of embracing my autism, and the fact that I have hit middle age, means that I am less concerned with trying to keep up with social norms unless they are obvious and helping people. So I have stopped wearing make-up, which I never enjoyed to begin with. I always found it a sensory nightmare, and have now given myself permission to never wear it again. Our home is a haven of visual reminders, fidget toys and other sensory aids such as weighted blankets, which help us to function. I have been taking a deep dive into my interest in Doctor Who over the last few years, including crocheting some of the characters using the book by Liz Ward (and adding one or two of my own).

So what has Autism Awareness / Acceptance Day / Week / Month done for me?

If it wasn't for that documentary back in 2005, that seed of awareness of my being autistic may never have been planted. I might never have had it mulling around in my head for all of those years, and might never have come to embrace it and finally seek (and obtain) a formal dignosis years down the line. I might have let myself be fobbed off by my daughter's primary school about her not being autistic, leading to her struggling at school the way that I did right up until Sixth Form.

Thank goodness for broadcasters and bloggers and everyone else who has helped me on this journey to embracing my autistic brain, just as it is. You are all amazing.