, 12 tweets, 4 min read Read on Twitter
1) A year ago today I was officially DX #Autistic at the age of 36. I spent most of my life knowing I was somehow fundamentally different to people around me but didn’t know how to explain it beyond saying “I’m different” #ActuallyAutistic #Autism
2) Prior to official DX I was Self DX for about 18 months. I will forever be grateful to the #ActuallyAutistic community who gave me support and didn’t use my lack of an official DX to insult, bully and exclude me. God knows I’ve experienced enough of that sort of behaviour ...
3) ... in my life from people who considered me weird, a freak and abnormal. I didn’t Self DX as autistic because it was “trendy” or “fashionable”. I wasn’t a “fraud”, I wasn’t trying to “appear more interesting”, I wasn’t “impersonating a disability” or seeking “attention”
4) I took the diagnostic criteria and critically applied it to my entire life after I saw so many similarities between myself and DX autistics. It turned out my self DX was right. Years of professionals had missed it. I sought a DX because no one IRL believed me. No one.
5) There are still people who don’t believe me even with an official DX or don’t understand how I could possibly be diagnosed. But they don’t see me. Since developing multiple chronic illnesses I haven’t been able to visit family and friends like I used to.
6) My ability to mask has also reduced as I’ve got older and sicker. So now family only see me for a few hours, a few times a year generally when I visit them. I see one set of friends a few hours every month or two. My other friends I haven’t seen in over year.
7) But I still mask capable when I am actually around people. Why? Because people can be cruel. It’s self preservation. It’s protecting me from you.
8) This is a snapshot of the me that people didn’t see: last year you would have found me sat on the floor crossed legged for hours listening to the same song on repeat. I had pressure sores on my ankles that would break down and get infected.
9) I would go weeks and weeks without the thought of having a shower even entering my mind. Late at night I would often realise that I hadn’t eaten at all because I can struggle to recognise hunger. I would recognise my son’s needs and make sure they were met but not my own.
10) I have been lucky that I was assigned an OT technician about a month or so after my DX that has helped with my struggles around food, self care, finances etc. It has been difficult and overwhelming because I struggle with change. Even change that is classed as good.
11) My life looks a bit different in some areas now. But only because I had access to OT support and a few courses after my DX where there were no value judgements. These professionals never me made feel inadequate or incompetent.
12) The way I understand and process the world around me, the way I interact (or rather don’t really interact) with people, the way I move, my senses, my behaviour, my everyday decisions, my struggles and capabilities. My #ActuallyAutistic brain is intrinsic to all of it.
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