Knock, Knock. Whose there? Autism.

My defiant streak during the last Reddit CEO overhaul led to myself joining a few more commenter groups. One of those was a female autism group. Some of the recourse has been "what is the ultimate goal of diagnosis or treatment?". Those with Asperger's seem to believe that the relief of unmasking should be their goal. One of my last breakthroughs from therapy is that so much of my language expression is pulled from imitation. Its a bit embarrassing to admit that I sat down one day did my wail and screech of joy only to realize I was quoting famous sesame street characters. 

I am still in the stage of self doubt however about "am I neurotypical, for this reason or that?" So I understand I have these echolalic expressions, but what about social responses. I mean I hate the grocery store because I don't want to look at faces and to get around that I smile like I'm still a store clerk to avoid holding eye contact. Yet, how do I know when I'm not masking?

One of the answers to this on my forum was that "its who you are when no one is around" but that doesn't completely solve my problem because I am anxious about rejection and negative feedback from others. Even alone I will worry about upsetting the people in my house and I know they are already weirded out by my habits. Think depression sloth or goblin gf... 

Today however, I finally had an actionable representation of mask on/off. Someone pushed there cart into me at and Aldi waiting in line and just kept doing it. Like we are talking right on my ankles and against my ass. The non-masking me was my original response of "I can't believe they are doing this...its a major social crime and everyone can see it. Punishment must be issued." Of course, when they saw there mistake and said a measly 'oh sorry' my mask slid right on. I've never felt it come on I just knew I could handle some situations better than some of my family. They call it my ability to either be mercenary or fill up the room with bullshit.

So masking me, turned it into a joke and gave them a acceptable reason why they made that mistake with a joke that encouraged them to "be happy with themselves". "Its okay you must have found something good to distract you. Share your wonderful time with me so we can be friends". Honestly, the level of main character barf it takes to so easily buy that but of course some people really are forgiving. 

I always thought I must be a pushover because according to my therapist (who I have been seeing for half a year), I am a people pleaser but my justice sense seems way to high for that to be true. If we were putting me on a alignment chart I am 50/50 with chaotic and lawful neutral. On a side note, it might be a fun quest to find out the mbti of which sesame street characters I imitate most. But yeah feeling the mask slide into place in order to keep the peace was a palpable feeling. Its the off and relaxed part I seem to have more trouble with. I know some of it is my perverse joy in responding "no" every time my husband asks for a a simple task. I never got to choose participation as a kid or set hard boundaries. Me giggling thankfully doesn't annoy the pants of him.

I have also done official screenings which are available for autism. Specifically, I believe it was audhd that was among the list of things that social security third party reviewer suspected. (One of my first cousins was recently diagnosed as well which is what got me looking besides tiktok). However, those high results also correlate with traumatic brain injuries and a certain manifestation of ocd. Something I intended the psychiatry services at my center to be able to test but they only are capable of treating mood disorders. I am still pissed they gave me a lazy working diagnosis of bipolar II and a medicine that is toxic to heart patients. 

For some reason I haven't told my therapist about the new heart diagnosis, pots. I think I feel confused and guilty that it came so quickly after just one visit. Of course, he had 5 years of repeat testing to review. Then again he also didn't tell me which subtype in order to further tailor treatment. So in a weird way it was instantaneous diagnosis but also overlooked for so many years.

What should I even feel about that? 

Yeah, there's a name for that...

So the actual day of my "independent exam" has passed and one would think that would give relief. Instead I am enraged about change, inconsistency and the unknown. I am not doing well mentally which tempts me to request a appointment at the new psych place before my disability review is even done. Getting essentially blank pages however, I am not sure would help when I rather tend to believe that the government is against me. Or it would be more accurate to say they are against spenditures. 

I am spinning out between wanting to just stop existing now and actually taking a peek at job listings. There are so many opportunities for having fucked myself at this interview. I have a feeling still having my drivers license might even be used against me. I felt absolute shame when I looked at my old proud list of specialists cross referenced with diagnoses and treatment plans only to realize that I only see three of them anymore. To be fair, some were temporary stops and that relationship wasn't meant to last anyway.

My dumbass has always made it a big deal about 'not being suicidal' and that I only really had that feeling during the blood poisoning incident. While it did take almost a year for that to heal up and wear off I don't feel posioned right now. Turns out at least as far as up to date mental health practitioners feel, its the same thing. The wanting to disappear now before the agony and suffering of myself or those around me is called 'passive suicidal thoughts'. 

Poor nice fella at my review I don't think understood that even if I factually understand he doesn't come into this opera with malice...I know the next steps of what happens once my disability is turned off.  My house becomes unstable, the car is lost, I go under in debt and maybe slower than I think we lose our home. There is also of course the SMALL problem of losing all of my medical care. I have technically thought about this before that there are really only two of my meds I will die without. Not having them would make me a piece of glass on the edge of a wire. Won't matter what knocks me down or where I fall, I will crash.

Lord I was so irritated by the changes of the office structure that I don't think I even sounded like myself in that exam. If I am being watched at all times then why are we cornered off? where is the camera then? Why is the floor not swept? why are people happy and loud? Jesus christ, I smiled and laughed at random things but I wanted to strangle everyone by the time I was out of there. Who didn't put the objects back front and center where they belong?

Having had to find dates in my medical files for a personal project doesn't help either since I saw how little information doctors have been writing down about my ER visits. That created an interesting data thread though. From what little I could find together, I seem to be on some sort of 2-3year trend of sudden  depression and cognitive function. I am still not thrilled about needed mandatory therapy and drugging when I come out the otherside of this. Yet, working was originally my dream at one time. Now its a nightmare cause I know the pain and failure of my mind and body.

Non-compliance versus Poor Case management

Another mediocre visit to the local emergency room has passed. While my body does not feel back to its status quo, I find today my mind is more bothered than anything by nagging problems. (I can't be too mad over a lackluster hospital visit because they really pulled out all the stops for me last time when my vision was in danger.) I knew awhile back that my disability case was strewn with hidden agendas and omissions. It felt however that that was behind me until recently. A phone call came in today to remind me that my CDR was in fact not done processing. So the threat of becoming homeless and having my medical care taken away is being strung over my head again. 

So adding the resentment I feel over my stroke being hidden from me, along with now a myocardial infarct around 2 years later-- to the being pushed out of a hospital without care. Well I was already suffering a depressive episode from bodily decline, this may just double down. What annoys me about my review is that it wasn't until I discovered the information regarding my stroke that I confirmed I was approved for disability under a psychiatric condition. This means for ten years now I've either flew mostly under the radar or been viewed as non-compliant. People who are non-compliant are probably among the 3-15% that get kicked out of the program. I cannot afford that to be me as I know from testing the waters in hopes of using ticket to work that my body always breaks down after as little as a week. 

Recently, I've given up two of my few remaining hobbies. Gardening and genealogy, though to be fair most of my genealogy work is already done anyway. After moving my plant plot to the back corner though last year I had a bad dizzy spell that felt far too much like a sudden stroke it scared me being that far from the house. It's ridiculous because its just the backyard but my lot is a quarter acre. The changing weather in Michigan also screwed up the season start and stop times. So plants aren't doing as well as they should. Even the ecology of are yard is changing. I can't keep up with weeding and we are reaching the peak of needing real laborious repairs. That's the bad things about houses eventually you have to sink big money in. 

I was at the very least able to get the shower walls redone but it still needs paint and the caulk I used is failing. Yet another thing to make one depressed. At the moment, I only have the energy for one task a day and I cannot explain the sleepiness. My night terrors have been gone for awhile at least but my sleep quality since my sudden biliary problem (cause of my er visit) has been very poor. The doctor who said she was in charge of my pancreas is suddenly playing hot potato now that there is a problem and my gp has so much to worry about already. He doesn't need to see me months early. Makes one a bit nihilistic that it would be fine if everything just disappeared like a switch turning off. 

From my childhood and twenties experience, I don't trust a psychiatrist to do right by me and diagnose correctly. From my neuro and post-stroke care, I know most drugs don't work correctly on me. From my random encounters in the er-wild, I know there is maybe one or two safe medicines for me. I would be so exhausted though seeing a therapist once a month. Lord I pace my doctor appointments out months from each other. Having a month with two events in a row is awful. This is however what I am going to have to do. I need a paper trail, I have to manage my case again, which may mean ressurecting the giant medical binder. I've made word documents before of timelines and notes-- organizing used to be fun before someone threw it back in my face. 

If I wasn't a bleeding heart, maybe I wouldn't be so susceptible to the "you don't deserve it" crowd.