A few years ago, I wrote a post on what I called ‘amateur diagnosis’ as part of a series of posts I did for autism awareness week that year. At the time, I was quite proud of it, and I thought I had made some really good points on the subject, even choosing a really good name for the phenomenon. Then I spent the next few years hanging out with autistic people on the internet, and the need to rewrite that post became progressively more urgent. And now here we are at 1am, when I should be asleep, fixing that need.
I will get this out of the way now, for anyone who is getting (understandable) heebie jeebies from this introduction: I accept and affirm that self diagnosis for autism is valid (also for other things, as I understand it, but those things are less my bailiwick so I’m staying in my lane here). This is not a view I have always held comfortably, or indeed at all, and it is one I still have to work hard on in my own head for various reasons. It is a reasonable assumption that, in my own working out on the subject, I have hurt people whose autism is self-diagnosed. This post is partly an act of reparation for that.
When I was seeking a diagnosis, no one told me that self-diagnosis was even a thing, let alone a valid one by which I could say I was autistic whether or not a professional wrote a letter to say it. It was not a phrase I came across in any serious capacity for an alarmingly long time, and I can honestly say I was blinkered in my privilege and the general anti-self-diagnosis attitudes of the world in not realising and accepting that the way I thought was wrong.
For me, my (professional) diagnosis was a completely vital part of my being able to discover and accept who I am. I was privileged to be able to access it (the NHS waiting list where I was living at the time was closed, so my parents took me to a private clinic). Had I not had it, I can honestly say, hand on heart, that I would not consider myself autistic, to my own detriment and to the detriment of those for whom self-diagnosis is their best, most accessible, and sometimes only, option.
To realise how blinkered I was was, to say the least, sobering, and learning how to hold space in my thinking for both the fact that my professional diagnosis was the key to unlocking who I am and that self diagnosis is absolutely valid and true is an ongoing process with which, I confess, I do not have a 100% success rate yet.
Self-diagnosis, or perhaps semi-self-diagnosis during childhood, would have helped me learn who I was a lot sooner than I did. It is a source of great bitterness to me that no one told me I had this option to identify what was going on on my own, that I didn’t need a psychologist to tell me what I already knew. I could have understood myself and perhaps saved some of the mental health issues, the suicide attempts, the ongoing trauma of living in a social skin that wasn’t mine, and the lingering damage of not knowing what it was that made me feel so broken all the time.
It took me a long time to realise that my antipathy towards self diagnosis was a product of not having felt like I had access to it. Knowing that there was a means to my self-discovery that was literally right there, and that I could have reached out and taken it for myself. I do not begrudge having been diagnosed professionally, but I do begrudge the priority that professional diagnosis was given in my life by my parents, my teachers, my friends, my doctors, at the expense of naming what we had known to be true for so long.
It makes me angry on behalf of my fellow autistic people who are not some combination of white, male, and rich, who do not have advocates to help them raise their voices to get diagnosis and help, who live somewhere where there is no NHS to give them a free assessment (assuming one can get through the waiting list), who are not listened to by those with the power to hand out official diagnoses, whose needs are ignored by jobsworth bureaucrats who require a certain letter from a certain professional before they will hand out the help that is so obviously needed. That I am where I am is a quirk of birth and good fortune. It should not be this way. I do not think professional diagnosis has no value, of course, and nor do I think that self diagnosis gives us licence to ignore professionals entirely at our own whim.
Going forward, it is my job to keep working on these views of mine that are still quite young, not fully bedded-in, and still have some resistance from my previously-conditioned thinking. It is my job, and the job of all those with a professional diagnosis, to listen to those for whom that piece of paper is a luxury that is denied them, especially when it is denied for utterly arbitrary reasons. It is my job to validate my fellow autistic people, to de-emphasise professional diagnosis as The Only True Path, to relieve myself of my “need” to establish how they arrived at their conclusions on their own reality, to understand that it is none of my damned business anyway and that we are much better off when we fight ableism rather than each other.
I have not always done this job at all, let alone well, and I am still learning and gaining more understanding all the time. It is true that you often don’t know what you don’t know, and this is honestly something that I have had to learn and unlearn.
Self diagnosis is valid. To my self-diagnosed autistic pals: I see you, you are valid, you are awesome, and you are my people. I am sorry it took me so long to get to this conclusion.