– The word “diagnosis” has become a trigger. Anxiety causing. I hear of others successful and I feel left behind, neglected, deserted. I am not part of it.
– If I had known from the start that it would be now I wouldn’t have gone through the stress earlier. The two failed assessments have caused damage and trauma and doubt.
– I begin to wonder if I’ve made all this up and I’m losing my mind. If it wasn’t spotted for so long then maybe it’s because it doesn’t exist and I have simply gone mad.
– Why why why why why is it so very hard. I fear so much that it will end badly. I’m trying to hope it won’t. My brain knows there is so much evidence, but I cannot believe.
– And still so much regret for my life and how much I hate it. Depressed, unemployed, childless. Useless to society. And the message for years that I needed to work harder. I am a wrong human. I should never have existed.
– Stress stress stress stress stress. I like my life to be basically predictable so I can prepare for it. And there is no prediction possible. The only evidence I have is that they will tell me they can’t diagnose me and I will return home suicidal once more, or that they will message and cancel. Because that is my experience of autism assessments.
– And if we get to the end and they say no, then what? Where does that leave my failed life? Without even a reason. Just failed.
– Why do I care what they say? Why not just self diagnose? Because I need the validation. Because I need black and white. I need proper. Confirmation. Stick to the rules.
– I am so very stressed and anxious. Alone tonight. Him working away. Head not cooperating to do anything interesting. Staring blankly at TV and Internet. In a moment I shall get wine and try to find that sweet point where I have drunk enough not to feel sick from anxiety but not so much that I start to feel drunk. Like I used to titrate whisky and pro plus in my 20s to get relaxed enough but stay awake.
– Am I really planning to put this on the Internet? Who cares about this stuff anyway? Maybe, just maybe, someone out there will read it and feel less alone. Possibly.
– Constant feeling of how unfair it is that I got to 45 before all this even arose. Envy of those in their 20s who have knowledge before they damage themselves as I did. Feeling that it is so much too late. At this age I should be starting to see rewards for hard work, but I did the work and didn’t get rewards. I feel sad and old.
– My entire identity is hanging in the balance. If they say no, then how can I go back? I can’t. It would kill me. There is no normal any more. I am living in limbo. An unknown state. Schrödinger’s autistic. I can hear the cat scratching in the fucking box but until the box is open it cannot be proven to be alive.
– Everything feels wrong wrong wrong at the moment. I hope it doesn’t feel like this for ever.
– In 48 hours I will be up before the firing squad. I mean, the inquisition, of course, or, as my brain keeps reminding me, the second autism assessment team. It feels more like a firing squad right now, and I’m wondering whether I’ll meltdown again and come home injured and suicidal like after the first assessment. I keep telling myself these are new people, in a new place. They have already been much clearer and more communicative than the others were. Maybe they’re actually good folk who want to help. But the memories of last time are strong.
– I feel like my life hangs in the balance. Which way will it go. Am I going to be sent away in uncertainty again? Told that I am too articulate or too complicated? Doubts doubts doubts. Am I just a fraud? After all, when I say I’m exhausted everyone says they’re tired too. When I say that I need time alone the chorus that responds says “We all need time alone!” So why are so many of them so capable? And I’m not. Or are they all pretending too? How do they do it? How do they keep jobs and raise kids and stuff? Maybe I am just lazy and useless. I don’t know. This stuff rattles round my head.
– Will I end up masking again? From the outside I look like a grown up woman, and I’ve been doing a reasonably passable impression of one for several decades. Since the assessment is so much based on evidence, they have to believe me, like the last lot didn’t. But people have consistently not believed me throughout life (see remarks about tired above). But why would I invent something like this? To cover up laziness? But I’m not lazy – I work myself as hard as possible at everything I do and I always have. My problem isn’t work, it’s knowing how to rest.
– Uncertainty is such a terrible thing in my mind. The not knowing. Held in limbo. Will this waiting be over in 50 hours’ time? Or will it just be starting all over again? My head doesn’t like it. It doesn’t like the not knowing. It doesn’t like the insecurity of it, the anxiety, the constant worry. Everything autism is now making me feel slightly sick, the pile of books, posts on Facebook. Just being myself. Because what if I’m just totally wrong about it all and they tell me it’s all in my imagination. Doubts doubts doubts. But there’s nothing else I’ve found, ever, that explains why my life has been so out of kilter with the world, and gone so wrong and felt so difficult and confusing. Nothing. If they have a better suggestion, I’d be willing to listen, but it would have to go a long way to explain everything in the way that autism does.
– Going to play Haydn was a good distraction. Enough friendly people. Totally overloaded by it. But did. And somewhat incredulated that I can sight read the viola part of the Creation without batting an eyelid but can’t work out how to get a cup of tea at the interval and also needed husband to buy coffee and remind me to take viola to gig. Hearing gone very sensitive as I got tired. But distraction.
– Identified conflict. Brain and research says how could they possibly not diagnose on Monday. But evidence from previous assessment and 20 years of mental health stuff says they won’t. Two lots of evidence. Conflict. Fight in my head. Need to know the actual thing. Everything feels so vague and I don’t need vague about this.
– After 2 hours under my weighted blanket I’m feeling massively much better than when I first got home. Much calmer. Still very very tired, but much better.
Sunday Late Morning
– In 24 hours’ time the assessment should be finished. Scary thought. Now just trying to distract myself with anything. Husband gone shopping for stuff we need. Had to have different flavour milkshake for breakfast today – took half an hour to get my head around it. Every time I don’t think I’m a “routine” person it turns out that I am more than I thought.
– Think about anything else. Because the anxiety gets too high. Way too high. Glad it’s not the first place though. Different place and people. Maybe better than before. Sure hope it isn’t worse.
– Dissociated. The world feels unreal. This happened before assessment 1 and assessment 2 too. Everything I do feels like going through the motions, like I’m not really there.
– Last meal of the condemned person. Fish, hash browns, cheese sauce. Tasted all very very strong. Taste sense gone hyper hyper sensitive. Hearing weird too. More weird than normal.
– This I know in my brain is the anxiety. The everything going strange and perceptions and senses all even more wrong than usual. The feeling of being apart from the world maybe some sort of protection mechanism.
– Suppose if I’m going to post this I should do it sometime. Can’t make much sense of it though. Head not focusing.
Tomorrow is another step into the unknown. I have not the faintest idea where things will be in 24 hours. Who knows.