Post number three. I can totally do this. I actually started this post a while back, but got stuck, and this seemed like a really good time to come back to it. I’ve already dealt with my professional, “proper” autism diagnosis in a couple of other posts (here and here), but this time, I want to talk about amateur diagnosis, including self diagnosis, and I reckon some of the ideas are applicable beyond autism too, which is a nice wee bonus.
When I say amateur/self diagnosis, I don’t just mean the sort of thing you do when you have a symptom and you Google it, then find yourself, inexplicably, half an hour later in a writhing ball of panic because Google has diagnosed you with THE PLAGUE and you’re going to die. That’s more in the line of hypochondria, which is still problematic, but not what I’m talking about here. I’m talking about the thing nearly everyone I know does, where we use our experiences of <insert condition/illness here> to suggest that other people may have it.
This isn’t necessarily a bad thing. Asking someone if they’ve considered a possible explanation for a problem they’ve had can be hugely beneficial (when done right), and can sometimes put people on the right path for a diagnosis. Without amateur diagnosis, I’m not sure I’d have ever got to a professional one, so I absolutely accept it’s necessary to use observations and other people’s knowledge to get somewhere.
However, amateur diagnosis isn’t entirely a good thing, either. It takes sensitivity and care to introduce the idea of something without imposing it, and I’ve been on the receiving end of less helpful kinds of amateur diagnosis with all sorts of things. When I was 11, a friend at school asked me very directly if I thought I had autism, because I clearly had problems keeping friends and with social situations. It turns out she was right, of course, but the method of asking wasn’t the most sensitive or helpful, and it turned into a big thing in my head that I must be bad in some way for someone to have said this. I’m not saying 11-year-old logic (mine or anyone else’s) is flawless, far from it, and bearing in mind she was pointing out problems with my friendships at the time, it’s natural to assume that this friendship was caught up in all that too, which is all by way of saying it was complex. I wish I could tell her she was right in the end, even if the conversation itself wasn’t great at the time.
Another situation I know of was where someone was told by their (now former) partner that she clearly had autism and should get it checked out, and said partner refused to accept that she didn’t want to go there despite being told in no uncertain terms. This is, I think, the worst of amateur diagnosis, where someone not only tries to impose (rather than suggest) a label on someone without the due care or qualification to do so, but also refuses to accept that the person doesn’t want this label even if they might have the right to wear it. This really highlighted to me the importance of how we perceive ourselves when it comes to diagnoses, and what other people’s opinions have to do with that (to which the answer is “not that much”, in the main). Maybe the person who got amateur-diagnosed with autism would get a diagnosis if she went looking, maybe she wouldn’t. Any opinion I have on the matter (and I’m an opinionated person, so you can bet I’ve got one lurking somewhere) is absolutely irrelevant, and the same goes for anyone else’s opinion too. As I’ve said before, diagnosis is only worth anything if it means something for how you live your life, and if knowing what’s going on will make it easier or better for you to live the life you want to.
My Mum and I amateur diagnose people all the time. We claim (probably spuriously) to have what we call The Antennae, which allow us to detect autistic traits, in a similar way to the idea of gaydar. We’ve got a look that says “are your antennae going right now? ‘Cause mine are”, and we exchange it frequently. I’ve no idea if we’re right, or if the people who make our antennae flicker give a crap either way, and we certainly don’t go around telling them about it. But it’s a habit we have, and I suspect it’s not just us two. We all have our experiences of all sorts of conditions, illnesses, and whatever, and the power of the internet to educate us on whatever we want only makes our powers of amateur diagnosis seem more potent.
If I wanted, I could amateur-diagnose anyone with anything by saying “you have these symptoms, and this condition links all of them, so you have it” using information I pulled from Google and possibly my backside. Obviously, that’s utter crap. I have no medical qualifications, I have a music degree, and I have no authority whatsoever to impose a diagnosis on someone else. That said, my experiences of the things that have happened to me, particularly in terms of mental health and autism, do give me information that may help someone else find their own diagnosis if they need or want it. Mum’s experience of autism with my Brother and others, and her unerring belief that there was something about me that was being missed led to my seeking diagnosis, with her support all the way. In a way, she amateur-diagnosed me, not in a way that I expected to carry weight on its own, but in a way that gave me enough momentum to go forward and ask the question of professionals who could help me.
It’s a fine line to tread. It’s hard to see someone suffering or struggling with something that you recognise and they don’t, especially when they refuse to accept the idea. Mental health stigma has a lot to answer for, and that’s another treatise for another day, but it fights directly against the attempts of those who’ve struggled to help those they care about be aware of the potential thing that might be happening to them.
My own amateur diagnosis experience has been largely helpful, to be honest. After all, what are parental suspicions as to what might be going on with their children if not a form of amateur diagnosis? Even if it’s just “I think there’s a Thing, but I don’t know what it is”, it’s still the act of attempting to draw links between issues and factors and understanding that something might link them, whether or not the parents know the name of what they’re looking for. Without my parents’ and then my own suspicions about what was going on in my head, I would never have looked around, and never got to the point where I wanted to know the name of my Thing. That said, the search for what was going on wasn’t easy. The “amateur” bit of amateur diagnosis was rather disliked by the teachers at my secondary school, who tried to problematise my Mother rather than solving my problems. Conversely, as far as the psychologist was concerned, my Mum’s experiences were actually a really valuable part of the diagnostic process when talking about my early childhood, and in the form of the interview she did, they were what made the diagnosis secure in the psychologist’s mind.
I guess it comes down to what you want diagnosis to do. If you’re in the life you want, and have come to the realisation that your brain might be built in such a way as to make you autistic, it isn’t always that important to get a psychologist to corroborate that. There are at least two members of my family in this category, who understand themselves in terms that help, but haven’t necessarily “gone professional” for a diagnosis. They have worked out for themselves what they think is going on, and are living their lives as they want to, without the need for further labelling. I, on the other hand, wasn’t in the life I wanted; I was mid-breakdown, suicidal, in an abusive relationship, and desperate for answers. The diagnosis gave me answers that I needed, that I’d been looking for my entire life, and are helping me to live as I want to.
Experience does not give one the right to amateur-diagnose people. It gives you the responsibility to listen to someone, and if they say “I think this might be a Thing, what do you think?” to reply honestly, answer their questions, and do what you can to help. It gives you the knowledge to talk about autism with someone who thinks they’ve got traits of autism but isn’t interested in actually seeking a formal diagnosis, and to acknowledge where they are and understand that diagnosis is a personal thing that you don’t get to mess with on someone else’s behalf. It gives you the understanding to wonder about a person, and then put the amateur diagnosis away until such a time as they want to talk to you about it, which might well be never.
What it does give you the right to is a voice, and the confidence to answer questions on what’s happening to you, what’s gone before, what’s coming up ahead, and whatever people might want to ask. It also gives you the right to say “this is me, no matter what I choose to call the thing that makes me so, and even if I choose to call it nothing”, and to tell people to shove it if they don’t approve or accept your choice.
Amateur diagnosis should come with care instructions. “Handle with care. Spray from a sensible distance. Results may vary. Keep out of reach of bigots, overly opinionated people, and people who aren’t interested.” Maybe it does, and we just haven’t read the instructions.