…or “Five Things I Wish I’d Known About Diagnosis Before I Started”.
I’ve had a few conversations with people over the last few months about being diagnosed with autism. Whether it’s people who suspect it in themselves and are doing some digging, people who accept they might be autistic but have no interest in finding out because they’re happy how they are, people who’ve had amateur diagnosis thrust upon them and not appreciated it, or just people asking me how it works out of curiosity. All this has led me to realise that there’s a lot that I wish I’d known about the diagnostic process (which I described here) before I started, like what it actually means to gain a new label and the effects of that on how I see myself.
No one really asked me much about how an autism diagnosis would affect me before I went for it, with the exception of the psychiatrist who did my pre-assessment. He asked me if I could think of any negative effects to being diagnosed, and went on to describe, in response to my blank look, the way people don’t always feel unmitigatedly positive about a diagnosis because of people’s reactions, employment prospects, relationships, and suchlike. From my position, mid-breakdown, stuck at home, and clamouring for answers about myself, I hadn’t considered that the diagnosis would be anything other than a good thing. For me, it’s worked out well, understanding more of who I am and why I work the way I do, but I can’t pretend it hasn’t come without its challenges as well, so I’ve tried to come up with a list of a few things I wish I’d known before I started. I’m not sure any of them would have changed my mind about whether I thought it was a good idea to seek a diagnosis (and it’s too late even if they would). Here goes…
1. Everything changes, and nothing changes
Being told that, in line with your suspicions of a decade or more of questioning and your Mother’s spidey-sense for such things, your brain isn’t made the way you’ve assumed it was for your entire life is a big f*cking deal. My rank of Captain Obvious is intact, well done me. But seriously, it’s massive, and it shook my world to its core. It explained a billion things about my life, my childhood, my school days, it made everything make sense, all the things you’d want from a diagnosis and more. The weird bit, though, was the bit where I realised that it actually changed nothing. Autism, whatever anti-vaxxers and the other assorted weirdos in this world will try to tell you, is basically inbuilt, a developmental condition. Nature/nurture arguments aside, I was always autistic, for all of the preceding 21 years of my life before anyone told me so. It might there on a genetic level, I have little but familial evidence (i.e. nothing scientific) to go on, but whatever else, it’s the way I’ve always been, I just didn’t have a name for it. I did change, despite the fact that I was always the same. I had to grapple with the fact that my world had been turned upside down by the knowledge of a fact that, to all intents and purposes, had always been there.
2. You will feel many, many things
Oh the feelings. All the sodding feelings. For something that only gives a name to the way things have always been, I felt much more strongly about my diagnosis than I thought I would. I started with relief, because I finally knew what was going on. Anger was a close follower, complete, boiling, hellfire anger over the way that things might have been if I’d known, and on my Mum’s behalf for the hell she went through. Confusion, as per point 1, was a big one too. Vindication for my Mum and for me, because we’d both been right. A boundless sense of optimism because I had found a way to be myself. More confusion as all these feelings piled in and had a good old tussle in my head as to which ones got to be experienced most. You get the idea. No one warned me just how important this thing would feel, and just how many different feelings would happen, and I underestimated it. Eventually, things settled out, but it sure was a bumpy ride for the first few months, and even now, nearly 3 years later, I’m still working things out, and get caught unawares by a new feeling, or an old feeling that’s not turned up for ages.
3. People’s reactions will be many and varied, and not all of them will be good
I told a large number of people about my diagnosis when it happened. I’m that sort of person, I tend to be open about things (in case you hadn’t guessed), and it was important to me that the people around me knew. I could have got away with telling far fewer people than I did, in hindsight, but that’s the side of the line I’ll always tend towards in any case. I had some great reactions, and some not so great. Lots of people who’d known me since I was a kid and who know my family were less than surprised. Not in the sense that they were saying “I told you so”, but more that they were glad that my questions had got the answer that lots of people, including me, had felt was so obvious. People who knew me less well were more varied. There were lots of blank looks, a few overreactions, a huge number of questions, and the growing realisation in my head about just how little people understood about autism.
I had one or two really poor reactions as well. The person with whom I was in a relationship at the time took it very hard. The situation is not without context, but some of what was said was extremely hurtful, and I still find it almost unforgivable nonetheless. I was accused of using autism as a crutch to explain everything bad I did, making a meal of it, and it was indicated to me that the idea of autistic children in the future (we were at a point in our relationship were such considerations weren’t that many years away) was unpalatable at best. Less overtly horrible, but still unhelpful, were the people who said that they didn’t believe in labelling people, and surely autism is just a label. Well, yes it is, but it’s also a ton more than that, and no one gets to tell me that “just a label” means I shouldn’t find value and worth in it. Labelling people is a difficult topic, I understand that, but this label is mine, and I will damned well wear it (more of that below).
Other people’s reactions shouldn’t put you off a diagnosis of any kind if you want to seek it, but they’re worth thinking about before you start, and you have to be prepared to grow a pretty thick skin sometimes.
4. Diagnosis is only any good if it does something – labels don’t inherently carry meaning
Labels are useful, sometimes. I think the best ones are when you choose a label that describes what’s going on, rather than choosing something and making the thing being labelled fit come what may. It’s the difference between saying “I am autistic so I will play into the assumptions, stereotypes, and statistical likelihoods” and saying “this is the way I am, and autism is the thing that best describes that”. It’s a subtle difference, but an important one, one that I didn’t appreciate or live out particularly effectively to begin with. As I learn more about what it means for me, I can make my label fit me better and better by the day, and I am feeling more and more like myself with its help. There are people in the world who like to amateur diagnose others with things. I do it a lot of the time with autism, but rarely talk to people about it unless they ask, because it’s a personal thing.
I know a fair few people who I reckon might get an autism diagnosis if they went and looked for one. Would that label help them? They are the only ones who know that, and the only thing I would ever tell them to do in that situation is to work out if it means anything. For me, looking for a diagnosis was a really important thing, and it’s meant a huge amount to the way I’ve grown in the last three years since I got it. It isn’t the label in and of itself that’s done that as much as the use of that label, and sticking it on anyone else doesn’t guarantee it would help them. Amateur diagnosis is fun, sometimes, but diagnosis is bugger all use unless the person being diagnosed will be able to use it and wants it. If they don’t, it’s not going to do anything useful.
5. Your diagnosis is yours, end of
Related to both points 3 and 4, this is a really important thing to me. I chose to seek a label, and I found it. I was in the middle of a serious and complete mental breakdown, desperate for answers as to why I felt so completely crap all the time. My diagnosis went some way to rationalising some of those feelings, helping me understand more about myself and my early life. My inability to make friends isn’t because I’m a worthless human being, it’s because my brain is built in a way that I can’t just do it. I get more tired than other people because the sensory sensitivity that goes with autism means that just existing in the world is knackering, before you get to the point of, y’know, actually doing anything. Those are just a couple of the things that my diagnosis did for me, but they won’t be the same for everyone, which is a subject my wee brother (also autistic) and I have endless fun with.
Diagnosis wasn’t a walk in the park by any means, and it’s not simple. The above is designed to show up some of the complexities involved, and I hope they’re of interest whether you’re looking for answers on your own or someone else’s behalf, nosey about how things work for me, interested, or whatever. Whatever else, I want to end on a good note.
You know what? I’m actually quite proud of being autistic. There’s not much about myself of which I’m proud, but I love the way my brain can work through facts really fast, add things up logically in ways other people can’t see, learn things really quickly, make people laugh by being straightforward and blunt, and talk people through the things that are happening to them rationally. Those are things I wouldn’t be able to do half as well if my brain were constructed differently, and I like knowing where they come from. Knowing what my brain’s like has meant that I can engage with it rather than fight it, and find these things that I like. They’re just about the only thing I actually like about myself, other than the fact that my eyes change colour on a daily basis and that I can make a bunch of small boys get to bed quickly by reciting Black Speech poetry at them. For all the complications of diagnosis, and all that I could have done with more warning as to just how much it would shake things up, finding out that I’m autistic was one of the best things I’ve done. If I could have my time again, I’d still choose to go for assessment, just better equipped so I wouldn’t have to improvise my way through. Knowledge is power. They’re not kidding.