The Diagnosis
When I got my autism diagnosis back in June last year, my initial feeling was relief. Relief that I wasn’t making it up, that I was in fact, autistic and could officially join the tribe that I only felt partially part of.
The second feeling was that of disbelief. What if I faked the whole thing, even to the point of fooling the psychologist? Maybe I was so well-versed in autism symptoms that I made the whole thing up and she just believed me. Part of me was concerned about the brevity of the assessment. I had heard that some assessments took several hours and required a number of different questionnaires, while mine was a simple two-hour interview. Was it even a real assessment?
But then I decided to stop looking the gift horse in the mouth and to accept that maybe, just maybe I was actually autistic and that’s when the grief came. Grief for all the times that I was treated as different and difficult; when I was bullied and told to change; when I desperately tried to fit in and just couldn’t. When kids laughed at me and adults told me I was a snob and terrifying. All those times, it was them and the world that should have been making accommodations for me, not me trying to change to fit into the world. I should have been the one treated with kid gloves, particularly as a highly anxious child, who never know how to behave with her peers, rather than constantly thrown in the deep end and left to fend for myself because “that’s how you learn to be independent”.
I was angry at the world for making me struggle with my disability, because autism wasn’t a thing in Poland in the 70s, at least not for girls and for making me feel inferior and always different. Nothing was ever easy for me and now I finally understood the reason.
It felt so good to have an explanation for why life has always felt so hard. I was faulty. I wasn’t made right. I know we’re not meant to consider disabilities as faults or defects, but I guess I do, which I guess is very ableist of me. At least in me, I do. I feel like I have a faulty brain. Not wired properly. Well, differently.
I once told someone that I can actually feel my brain being autistic. I can tell when it’s doing weird things. When it’s thinking differently, not coping with “normal” things. Not processing right, or at all. We now talk about it like this at home. “My brain isn’t processing this right now.” For example, when I’m overstimulated. One of the things my brain can’t cope with very well is time, which has led me to suspect that I might also have ADHD. I often double-book myself, or miss appointments, despite having them written down in multiple diaries/calendars. I forget to add parking time to travel time, or time for petrol/coffee/etc. Last year I was invited to a wedding and missed the ceremony because of my time issues. How embarrassment!
My assessment report highlighted that I struggle most with relationships and communication. I get the relationships part, but I always thought I was pretty good at communication, especially at work. Also, considering how I threw myself into business networking in Ballarat and made friends as a result, I thought I didn’t really have any issues there. The problem though is that it takes an enormous effort and is a learnt skill. I spent years learning how to talk to people and to build work/business relationships. It doesn’t come naturally to me and those relationships are mostly fleeting. I don’t have the skills to develop them beyond the surface.
When I told her about my diagnosis, my mother asked me what I was going to do with the information that I now had about myself, as if just having that information wasn’t enough. I don’t think she understands my need to understand myself, how brain works and why I am the way I am. At the time, I wasn’t going to do anything with the information beyond asking for some accommodations at work, but I was just happy to be validated. Self-knowledge is very important to me.
Since then though I realised that my life does not have to be as hard as it has always been. Having listened to Hannah Gadsby’s “Ten steps to Nanette” in which she talks about her own diagnosis and her journey since then, I saw that there are things that I may be able to do for myself to make my life easier. One of those things could be getting to know my own particular variety of autism and therefore my needs. Once I knew those, I could figure out what help I needed. Maybe I could learn to stop getting angry at all the things. Maybe I could avoid the things. Or find ways to stay calmer.
Since I didn’t get my ASD level in my initial assessment report, I asked my psychologist to provide one and surprisingly she came back with a level 2 — needing significant support. This meant that applying for the NDIS was going to be relatively easy, especially after having worked in the system and knowing what was required on the application form.
I now have funding to figure out what my needs are, as well as psychology and speech therapy to assist with communication skills. The speech therapist helped me see that neurotypicals have their own communication deficits and some just can’t understand simple and concise communication. Not that that helps me much, because saying “The sky is blue” in a multi-sentence paragraph is just stupid, especially when we’re all short on time at work.
Interestingly, I’ve been struggling at work with my communication and the kind of work I have to do and have figured out that I’m in the wrong job and in the wrong team. I don’t get to use my writing skills and instead I have to have a high level of attention to detail which I hate. Another pointer towards ADHD.
One thing I’ve learnt is that when you’ve met one autistic person, you’ve just met one autistic person. None of us is alike. Each presentation is completely different. I might have functioned like a neurotypical person my whole life, or at least pretended to, but I clearly haven’t. The depression, the anxiety, the vulnerability and the naivete that caused me to fall prey to a sociopathic narcissist, it all makes sense now. One thing that many autistic people have in common is that we are commonly victims of abuse. We trust easily, we don’t understand how the world works, and we don’t understand why anyone would want to hurt and manipulate us.
The hurt done to me has left a permanent mark on me. One I may never recover from. A huge chunk of my life was stolen from me and I can never get that back. Here is what I think about that. That was homework from my new therapist. I hope it does something.
Originally published at A blog of her own.
