A note on language: I wrote these posts in 2016, when I was still uneducated about problematic language and functioning labels. I’ve chosen to republish these posts exactly as I first wrote them, unedited, and therefore you will notice that I use vocabulary I no longer choose to use, including ‘Asperger’s’ and ‘ASD’. I prefer the term ‘autism’ these days, and that is the term you’ll see in more recent posts. You may also spot some person-first language; these days I’m more likely to say ‘autistic person’ than ‘person with autism’.
Last week I had my initial assessment with the psych team at the clinic. Quite a few people have asked me how it went, and I meant to post this much sooner, but it’s taken me a while to process my thoughts and feelings about it. And I can’t tell you yet whether I’m going to get a diagnosis, because this was just round two (round one: getting past my GP). I am now playing a waiting game to see whether I get to play in round three.
So what’s it like being assessed by a mental health team? A bit like being in one of my psychotherapy sessions, but with two counsellors instead of one. And they’re both complete strangers to me. Oh, and this time, it’s, like, a test…
Or at least, that’s what it felt like to me. A test; or a game to which no-one had properly explained the rules. I was not given much of a heads-up beforehand about what to expect (and as someone with Asperger’s, this made the whole thing challenging from the start: to go into a strange building, to meet an untold number of strange people (well, strangers, anyway), in a context that is totally new, is unsettling enough without adding the part about it being a clinical assessment!).
It’s a chicken and egg sitch, apparently…
It’s disconcerting to go into a room with two people who are coming at something from an entirely different angle: I am convinced I have Asperger’s and have been for years; to me, this assessment feels like a formality. They, on the other hand, probably see me as someone who is neither doctor nor expert, who claims to have one set of difficulties, but in their eyes these difficulties could be attributable to something else entirely, or to many different causes. Have I suffered with depression because of difficulties to do with having AS – or do I just believe I have AS because I am depressed? Am I socially inept because I have AS – or because I suffer with anxiety? (I know people who suffer with anxiety, and yes, I agree there are some similarities in some of the symptoms.) In isolation a person might be able to explain certain things away; but when you add up all my traits and symptoms there is only one solution that makes sense to me.
On being kept in the loop
I understand that the people who assessed me (who both seemed very nice) are not experts in autistic spectrum disorders. Or at least, I understand that now; no-one thought to explain this to me at any point beforehand (I suppose I could have asked my GP, or called the clinic beforehand to find out more, but I am not always very good at asking the right questions, or knowing who to ask, or how, especially when I am feeling worried about something). In fact, it was only made absolutely clear more than half way into the session, by which time I had worked it out for myself by the questions I was asked and some of the things that were said to me. It became obvious pretty quickly that I knew more about AS than they did. It was like explaining things to my GP all over again. I’d refer to something in passing, something that’s a typical AS trait, and one of them would ask me to clarify what I was talking about. If I had understood this beforehand, I could have prepared for it and responded to their questions differently.
Why a mental health assessment can feel like a bad job interview
One thing that I know a lot of people with Asperger’s experience is great difficulty in maintaining concentration while speaking – especially if they are interrupted. I definitely experience this (one of many reasons why I’ve found teaching can be a challenge). I experience this as what I can only describe as a complete mental white-out. If someone asks me a question and I am interrupted mid-answer, my brain seems to shut down. It can take me several seconds – or longer – to collect my scattered thoughts and speak coherently again. As I’ve said, this is common in people with AS. So I found the fact that I was constantly interrupted by one of the clinicians assessing me extraordinary. Perhaps they were coming at it from the position that I probably don’t have AS; but if they wanted me to express my thoughts coherently and clearly, perhaps it would have been better to assume that I might have AS, and to maybe read up on it a bit first, so they’d know that not giving me enough time to think, and then continually interrupting me mid sentence, might not give me the best chance at getting my thoughts across.
I left the assessment feeling the way you do after a bad job interview: knowing there were so many more examples I could have given, and so many more effective ways of expressing them; but it was too late.
No, I don’t know why I’m crying.
Oh, and I blubbed. Another delightful trait of AS (in females; I don’t know about the boys) can be extreme and uncontrollable emotional reactions (as anyone who’s ever watched an even slightly sad film with me, or happened to catch me reading the last page of a novel – pretty much any novel! – or sat next to me at a funeral, will testify). So there I am, sitting on a sofa opposite two total strangers, clutching a tissue and trying to sound sensible and coherent and intelligent. And definitely in my right mind, and not clinically depressed (I’m really not, that was last year!), or chronically anxious. I just can’t talk about personal stuff without bursting into tears, okay? And no, I don’t know why I’m crying.
So all in all, a pretty shitty start to the week. But afterwards I got to see my lovely wife for a bit, and had a cuppa with a good friend who made me laugh about other stuff, so that was okay.
And now I wait. The two people who interviewed me will take their notes and observations to a committee of health professionals (as far as I can gather) who will decide whether or not to refer me to someone who actually knows something about Asperger’s. And if that happens, I might get a diagnosis.
And if not, I’ll have to work out the next step.