Diagnosis and Identity – Need and Power
In this post, and in others that follow it, I want to think about the issue of diagnosis in autism/Asperger syndrome. I want to explain a little about the power of diagnosis (as I’ve experienced and observed it) – what it means to confer a label onto someone, and give (access to) an identity. I should be clear that I don’t mean to suggest that this power is necessarily positive or negative. It just ‘is’, and therefore I think it needs to be exposed and explored.
This particular post is personal. I can’t imagine where else I’d start.
In it, I had intended to revisit my diagnosis, and my actual diagnostic report to look at what was written in there about me. (I can remember parts of it by heart, but I wanted to make sure that I had the wording right). But it turns out that I’ve lost it again. I needed it last year, in order to ‘prove’ my autistic status but I don’t know what I’ve done with it since. A clinical psychologist could quite probably label this as being “poor executive functioning” – misplacing something as failing to keep track of it – being chaotic and incapable – being autistic. What it actually is though, is that I’m quite ashamed of that document. I hate how I’m described in it, and I can’t stand to look at it. But I need it.
It’s an odd thing that something that you work so hard to attain, – to be given, and that is so important for accessing support and services, and for understanding who you are, can also be such a source of intense discomfort and shame (not the diagnosis itself, but the words used to describe everything you are as a deficit – and anything remotely ‘positive’ as an exception). That you can be the custodian of something you fundamentally hate.
So in the next few posts, I’m going to try to explore this curiosity of the power of diagnosis in my life, and then think about what this might mean for emerging discussion about the social role of diagnosis, and of categorizing people more widely. For now though, let me explain how I got to the point of “diagnosis” – this is crucial to understanding why it matters so much – why it is powerful.
The “Moment of Realisation”
There was an actual moment where it all started.
I was home from university (at my parents’ house) because I had been struggling really badly and needed to be at home. It’s hard for me to describe what I mean by ‘struggling’ as I’m so immersed in that word that it’s actually difficult to communicate its essence, and I’m sitting here racking my brains but it just won’t come out right. Everything I put down reads like either a script from a book about autism (cherry picking things that we know “about autism” and explaining how they applied to me), which is exactly the approach I’m trying to avoid, or it reads like the kinds of experiences that come under headings of “you’ll grow out of it” or “all teenagers are depressed” – which is exactly what people told me at the time. But it wasn’t that. And this is the problem – this is always the problem when I try to explain – I just don’t know what the right words are.
So, I’m sorry that isn’t particularly clear, but part of what I’m trying to express in this blog is this very problem – one of not having the words to tell your own story, and therefore being shoehorned into other stories (the ‘autism’ story, the ‘clever girl’ story, the ‘depressed teenager’ story.)
But yes, ‘struggling’. Which meant in practice a lot of crying, a lot of headaches and a lot of feeling sick. And wondering what the hell was wrong with me because this was becoming something of a pattern – having been told since before I started school that I was ‘bright’ and ‘able’ and ‘above average’, but also feeling utterly stupid because I ‘have no common sense’, and feeling totally unable to understand people around me – why they do the things they do, how they manage social interaction, how they know when it’s their turn to talk in a conversation, how they know when to stop talking about something that interests them because the person they’re talking to is bored, how they know if someone is their ‘friend’ … and yet at the same time being so incredibly sensitive to the emotions of others that it would literally hurt.
If there’s one thing that autism is, it’s a whole string of contradictions.
So yes, university was all that but magnified. And I had no word to explain it. I had diagnoses of depression and OCD (Obsessive Compulsive Disorder), but neither of these ‘fitted’ – and people who knew me said that they weren’t right. They told me I was ‘normal’ and thought that they were helping me. So what conclusion could I reach but that I must be a freak and a failure?
And then, on that one particular day, I was half asleep, half watching the television, and someone began talking about having Asperger syndrome, and specifically about how they felt when in crowded places or surrounded by too much noise. It was so powerful because I could relate to it. There was a word at last! It was also problematic though, because the only other time I’d heard it discussed was by someone talking about the problems they had with a colleague at work who was ‘difficult’ because they had Asperger syndrome (words are powerful!) but there was no going back, I had to find out more.
There was nowhere near as much literature specifically about AS as there is now – and certainly nowhere near as many ‘first-person’ accounts, but there was some, so I began researching. This was tricky though because there wasn’t really much consistency in what I found – and some accounts would directly contradict others. So how could I know if I matched enough with all of this to “count”? And given how much of a failed person I was feeling, I really needed to “count”. I was in a place where I needed to know for sure. I was caught between “you’re a normal teenager, you’ll grow out of it” and “I’m a freak and a failure” and that’s not a good place to be. So I NEEDED to know.
I’ll continue the ‘story’ after this point, of actually seeking diagnosis in another post, because there’s quite a lot to tell – but the one thing that strikes me as strange thinking back on this, is how in seeking a diagnosis, one can be so reliant on others (clinicians) to “give” what they call a ‘diagnosis’, but what feels to me so much more like an ‘identity’ – a way of framing a personal story.
Identity as “given”?
I wonder if there are other instances where people feel the need for an identity to be “given”? Maybe professional identities work in a similar way? (The moment during a PGCE where you “become “ a teacher?) The difference I can see there though, is that professional identities can be fluid (if the ‘teacher’ identity or the ‘doctor’ identity or the ‘dentist’ identity become unhelpful or problematic they can be left behind). It doesn’t work like that with something as essential as who you are.
I’d love to know if others feel such a need for an identity and such a reliance on those with the power to give it.