Published on 12, July, 2020
I had my assessment 2-3 weeks ago and was told I'm autistic. I don't have my report yet and have been told not to expect it until the new year as they have a backlog of them to write up. Apparently I'll also get a follow up appointment around that time.
I find myself frequently thinking about things I should have said during the assessment. For example, the assessor spent a long time asking if I had any collections and I kept saying no, I can't think of anything, so we moved on. It's literally just dawned on me that for the last 10 or so years I've spent upwards of two hours every day playing a card collecting game online, and that I'd be pretty upset if that collection vanished. But because it's digital rather than physical, and it's a thing I know is "boring" and that I shouldn't talk about, it didn't spring to mind.
I guess I'm worried that my report is going to make me look "less autistic" than I really am. By the halfway point of the assessment, the assessor seemed pretty unconvinced by my autistic experiences, as she kept saying "it doesn't seem like routines are a big thing for you" or "it doesn't sound like you do that to an extreme extent." Needing to stick to routines is a big part of why I don't travel (ever), have close relationships, or have a regular job, but I couldn't seem to get that across, as I was simply answering the questions honestly, and really, no it's not a big deal if I have breakfast 10 minutes earlier one day than another, and no, my special interests don't interfere with things I need to do (because I've structured my life in such a way that I can devote several hours a day to them). Once we got onto talking about social stuff she seemed more convinced, but I think I might still have been heading for a "not autistic" diagnosis until she asked how often I used to have meltdowns before I structured my life to give myself more solitude and I said "oh, every day." She seemed surprised, like she'd assumed everything I was describing were occasional problems, not all-consuming.
I know all I can do is wait for the report, but I just wanted to vent.
I was diagnosed by the NHS in a single 4-hour interview with no tasks to complete, just questions about my experiences.
I also do the same, thinking about things I should have said, and my psych was quite convinced that I was autistic as my written report was extremely detailed, he kind of saw the interview as a formality. I think basically the kinds of questions they ask and the way they think about autism are quite limited and behavouralist; like for example, you know yourself you need structure, but because the questions are behaviour based, eg "Do you get upset when you eat breakfast at a different time", they're obviously not going to pick up on the myriad of different ways structure can be important to you in your life. Again "Do you have collections, for example of figurines?" is very different to a broader question like "Do you enjoy collecting things?" And we are autistic, so of course we are going to answer the specific question at hand, we're gonna answer the question that was asked, not the question they should have asked. I think for this reason the assessment is always going to feel a bit weird and disorientating? And afterwards, when you actually have space and time to reflect and process, of course you will think of all the relevant things you could have said. And in any case, they know at least that autism is a spectrum, and that we don't have to tick every single box to be understood as autistic.