This blog post has been writing itself in my head the past few days. It’s a reflection of sorts. On the 29th of July it’ll be a year since I was diagnosed with Autism Spectrum Disorder Level 1 (Official term in Australia). It’s kind of surreal to me that 11 months ago words flowed so easily, now they trickle and dry up pretty fast. I’m in a different head space than I was last year, I suppose. As a matter of fact, roughly this time last year was when I began to have suspicions that I might be Autistic. I remember when I first ever read Rudy Simone’s trait list and a lot of them resonated with me, I made a comment about it to my Mum and she disagreed so I jokingly shrugged it off and privately delved deeper in to researching Aspergers/Autism. I went from knowing next to nothing about Autism to a lot in a short period of time, to getting diagnosed a few weeks later.
I do wonder if I wasn’t going through such an emotionally tumultuous time of life when this all came to light that I might have been able to handle things more calmly. If I had had the luxury at the time to truly be selfish I believe things would have been a little easier. We’ll never know; the past has passed. But if I can recommend anything to someone late, but recently, diagnosed or looking to be diagnosed – set time aside for yourself for processing what it all means to/for you if you can. From others’ journeys I’ve read it seems my journey from learning about Autism to diagnosis was definitely on the fast side. It was roughly all within 6-7 weeks I think. Too fast, I now believe.
There are blog posts on my site which I’ve written over the past year that will attest to the fact I struggled with the diagnosis. For me it was very all or nothing. On one hand I was elated that a lot of my life and oddities now made sense, and on the other hand I was absolutely deflated for so many reasons. I think the lack of clinical support after my diagnosis didn’t help. I couldn’t really afford to have sessions with the psychologist who diagnosed me – although, I did have one session because I got to breaking point in my head. I was under a mental health care plan, which gave me some free sessions with a psychologist who I had been seeing pre-diagnosis to help me deal with a romantic break-up, but she was pretty well shocked that I had been diagnosed. Literally, her words after I told her about diagnosis, with raised eyebrows, were “You must be very high functioning”. I didn’t see her again. I am isolated anyway because I live in a small rural town, the diagnosis compounded that. Thank goodness for online support through Twitter and blogs. I’ve been up and down, backwards and forwards, round and round – what an experience, thankfully something I won’t need to repeat.
I reflect now and can see that what caused me probably the most anguish and that was not knowing. It was sort of like the ultimate frustration; if I hadn’t known about Autism for 29 years what else didn’t I know. You don’t know what you don’t know until you know it! There are so many new words in my vernacular now that a year ago I had never even heard of e.g. alexithymia, dyscalculia, echolalia. I went through a period of just needing to know. I felt overwhelmed a lot of the time, but I had this insatiable drive to know and understand myself. I didn’t want excuses, I wanted explanations. And I wanted to know everything yesterday. The only person I knew who is, also late-diagnosed, Autistic happened to be my ex-boyfriend and there was still so many emotional issues from the relationship that hadn’t been dealt with after we split, so one minute I would be asking him if something made sense to him and then the next I’d be losing it at him because he’d broken my heart and thrown my life into disarray a couple of months beforehand. It was a pretty messy period of life.
My Dad’s terminal cancer diagnosis in December, and the preceding weeks of tests etc. That was another major emotional event, and that’s ongoing, it’s been 6 months since his diagnosis, the worst is yet to come. But things are ok at the moment. I’m not crying at the drop of a hat anymore, I’m ‘going with the flow’. The end will come, possibly this year, but I’m not focusing on that anymore – I’m enjoying working with him and learning from him, and seeing my confidence grow. I think feeling needed is something that is so important., and I really do feel that I am. Matter of fact, I’m told that I am.
I do feel that in the past few months the turbulence has settled and things are coasting along, I still feel up or down every now and then but the extremes haven’t be reached for a while. I’m not 100% sure why this is, but I have a theory about myself; when I find out about something (be it Autism, esophageal cancer, etc) I submerge myself in it, I let it and all the information I can find overwhelm me, almost like I’m going through all potential ‘worst-case scenario’ reactions at once. It’s brutal to catastrophise things, but eventually I’m ok and that’s something I keep at the back of my mind – eventually, I’m ok. That’s how I process things, generally delayed, but all at once. My Autistic friend is the opposite, he (metaphorically) buries his head in the sand about what’s going on, and deals with the fall out after. I come across as over reacting, he comes across as not caring. (You can probably see why we clash sometimes). It’s a spectrum!
I think the biggest lesson I’ve learnt over the past 12 months is that; it’s ok to be me. I’m not broken even when I think I am and I don’t need fixing even when I think I do. What I need is patience and understanding. I need to be listened to and heard. I need to be taught things in a way that I will learn them, and retain that knowledge. It’s ok for me to not like some things – I don’t have to like things simply because others’ do and I can like things others’ don’t. I don’t need to have an opinion on everything and everyone, I don’t generally partake in arguments, I believe what I believe and I give myself permission to change my mind as frequently as I like when new information is available. I’m still my own harshest critic, but I’m also becoming more gentle with myself. I know when I need time out and I take time out now instead of pushing through and exhausting myself. I guess it’s all a form of self-acceptance.
Image credit: https://au.pinterest.com/pin/654851602036950850/