This is something that I wrote one year ago today, posted online, and promptly locked up for fear of angry reprisals. It's about diagnoses and their dangers, and my own life too. People often like diagnoses. They become part of identities and can be a stable, comparatively safe place when mental distress is difficult to deal with. Sometimes in distress it's more comforting to be borderline, bipolar, or whatever else and to know your place than to challenge or break out of those enclosed spaces. That's part of their appeal but often part of their danger and part of why in some respects psychiatry can become a secular religion. To challenge or play with concepts of diagnostic criteria or even mental illness is to invite anger, unintentionally.
My thoughts have developed over the last year, as has my life. They'll continue to develop. I've thought more about my autism diagnosis and have more reasons now to question it. I still think it fits enough in that I do pass the criteria to get a diagnosis under DSM-V or other recent definitions. I'm not sure it matters though and "autistic" is less and less a part of my identity or anything I need to cling to for meaning or self-validation.
What I know for certain is that in researching autism and seeking diagnosis I became autistic, or at least much more autistic. Perhaps there's an element for that in anyone who believes a mental health or neurodiversity diagnosis. We can live them more than we live ourselves. It's taken a lot of work to unpick which parts of the long list of traits of Asperger's in women were actually me and which were ones I absorbed. I've done the same with other diagnoses too. I did it with BPD. I did it with DID too, even though I tried not to read about about that diagnosis. I still became "more DID" through subconscious suggestibility and belief. I've seen others do the same with diagnoses. It's common, perhaps an inevitable part of human psychology, at least of white western psychology - I can't pretend to know whether other cultures would experience receiving a diagnosis in the same way.
As for Dissociative Identity Disorder, we only need to look at the famous case of "Sybil" to see how it can develop along lines of delusion and self-delusion and belief rather than on lines of actual early childhood trauma. We can even invent memories to account for symptoms that have only developed as they have out of diagnostic beliefs. That's not to say DID isn't a possible real consequence of extreme early childhood trauma, only that it can also develop, in error, due to the damage risk of diagnoses and the way our heads work. I'm in no way saying that DID, or plurals, or systems, or whatever term you like, is not real. I'm also not saying, at this point, that I or we don't have DID or OSDD or whatever the next edition of diagnostic books calls them or that I or we are not a system.
I began the specialist treatment mentioned at the end of this post. And then postponed it due to seeing my life, my problems, and the concept of mental illness very differently to a year ago. Partly that's because I'm coping with life better at the moment and making realistic plans for my future. Partly it's because I need to spend time working out for myself what did and didn't happen. Last year I recovered trauma memories. But I strongly doubt them. There's a possibility they're true. There's a possibility my head is creating them to account for diagnosis and to fit in with everything the therapist says. I don't know.
There's almost no way to know for sure and I don't want to receive therapy to find healing for things that didn't happen. I don't want to receive therapy in which my own natural human level of suggestibility would cause my head to create new and potentially very damaging stories. Even my alters are in doubt. Are they real? I hardly know that either. Was even Lucy, whose art is on my wall, a figment? At this point I don't find it matters much. My life is my life.
I'm still free of psychotropic drugs (medication) and plan to stay that way. In the autumn, more than a year after the last dose, I finally felt like their damaging effects were less noticeable in my head and body. Recovery from the drugs can take a long time even after withdrawal symptoms fade.
And the Lancet keeps on publishing studies that show antidepressants (recently, especially Sertraline) don't really work that well while calling for them to be more widely prescribed, even to people who don't have an easy to get medical diagnosis of depression or Generalised Anxiety Disorder. That's psychiatry for you.
One year ago I wrote this, having met someone who had been assessed three times for autism, each time with no diagnosis but who still held with total dogmatic faith that they were autistic and that being autistic was the reason their life stank:
Some people are massively desperate for a diagnosis. A respectable one of course. Not BPD.
I know people who have been assessed for autism two, sometimes three times, with the result being each time that there's pretty much zero chance of them being autistic even under a very liberal interpretation of the diagnostic criteria.
But they still say they're autistic. They talk about how unfair it all is and how autism affects them.
They're not autistic. But somehow they really, really, really want to be autistic and keep claiming it without regard to actual evidence.
Online tests aren't reliable for diagnosis. And we humans can convince ourselves of pretty much anything. Everyone has autistic traits. Everyone. It doesn't mean they're autistic.
To be honest, being autistic isn't some kind of paradise. There's a lot that's hard about it. I guess if life is hard it could be nice to have a diagnosis to hang it on. Being on the spectrum, if you're "high functioning" as they say, has its positives; aspects of personality that can be useful. But it's also a bit shit.
Diagnosis doesn't make life easier. It just makes it a bit easier to understand, and only if that diagnosis is actually correct. A false diagnosis only makes things worse in the long term. An autism diagnosis as an adult isn't a magic pill. It's not a pathway to lots of support. Often it can be a pathway to LESS support. It's not something to be unreasonably fought for or claimed even after the experts in diagnosis repeatedly say no.
As for other diagnoses, sometimes they help. Sometimes they hinder. I know people with a diagnosis where the criteria call for just a single episode of symptoms from which most people recover and often don't have another episode beyond what is "normal" [horrid word] for human responses. But that diagnosis is portrayed to them and then by them as an illness [which is also often an unwise term for mental distress] that lasts for a lifetime. They're stuck on drugs for life that actually make long-term prospects worse and are taught a mindset of hopelessness. All from a diagnostic criteria calling for a single episode that goes away. It's horrendous. And once you're in that mindset and believe in that lifelong illness and lifelong reliance on medication then you make that life a reality.
Autism is of course a lifelong diagnosis. Even so there are mindsets within it. My mind changed seeking diagnosis. I became more autistic. I've seen a lot of people do the same as they read about traits and unconsciously absorb or magnify them. So lives, once autism is learned about, become harder to live not easier when it should be the other way round.
I'm autistic, diagnosed by experts in just an hour once I got round to it because they said it's so obvious. Was it though? Or was there an element of this intelligent, self-taught about autism semi-expert being more autistic than she is for the purposes of diagnosis, a chance that I knew what answers would win the "prize" and I gave them? The answer is yes. I've looked deeply at that diagnosis and what led to it and know that the picture I gave of myself in that hour was not fully rounded. How can it be? How can anyone give a fully rounded, objective presentation of the complexity of their beings in any given hour? I've gone so far as to doubt the diagnosis but there was enough honesty in that assessment and enough other evidence too that the autism label sticks.
As for my other diagnoses? There are many. Some of them I fitted the criteria, or appeared to, in a presentation when assessed. At least in the opinion of the person who assessed me. But I reject almost all of them. Either because they're just wrong or because of the way they are seen not as a manifestation of distress but as an illness in which pharmacology treats a physical cause such as low serotonin or in which symptoms are attacked and suppressed primarily with medication rather than with life. I don't quite say that there's not a place for medication but I do say that the primary way to treat mental health difficulties should almost never be through pharmacology.
That stands for psychosis as much as for anxiety - treating someone presenting with a first or second episode psychotic break with antipsychotic drugs lowers their long-term prospects quite a bit. And antipsychotic drugs are often given now where there is no psychosis. I know far too many people with no psychotic symptoms who take antipsychotic drugs every day, drugs that actually change brain structure, have potentially lifelong side effects, and which leave you far more sensitive to dopamine changes thus leaving you more open for the rest of your life to the kind of artificial psychosis that would be created deliberately in test conditions.
Anti-depressants too have been shown to leave you more at risk of future episodes of depression, which is just one of the factors that isn't taken into account when licensing them for use. We're sold almost a "magic pill" version of antidepressants and we're sold a theory that low serotonin causes depression when the evidence just isn't there for it and most experts don't believe. We're told that raising or lowering serotonin alleviates or causes depression even though artificial lowering serotonin in test subjects didn't cause depression and even though the was even an antidepressant that lowered serotonin and had the same results as those that raise it. Last year we were told in all the headlines that antidepressants work much better than placebos - even though the not clinically significant result in the Lancet gave a worse score than a similar study ten years previously after which the headlines told us that antidepressants don't work much better than placebos. Both work a lot better on average than no treatment. Don't get me started on problems with the testing procedures.
We need to be told the truth about medication. About diagnoses. About mental health. Because without it we cannot begin to make informed choices about our own health care.
I am currently free of psychiatric medication. I prefer it that way even though the anti-anxiety effects of the medication I was on helped. The drugs fogged me though and there's a lot more clarity without them.
I'm also waiting for specialist psychology treatment resulting from yet another diagnosis. Not a diagnosis I fought for. Not one that was expected. And not one that I would have believed until things happened that made it clear.
Treatment may be tough. It'll involve learning a lot of skills to deal with symptoms and to deal with life. But it may also involve a lot of time.
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