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aikitsune
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07 Sep 2018, 10:05 pm

I'm going through a rough spot right now. I'm going to just kind of just start writing and see where it goes. This will probably be really long; I apologize in advance, but I hope at least some of you will read.

My ability to function seems to fluctuate a lot. I consistently have had periods that I used to classify as "good," but the more I think about it lately, I realize that while I was "ok" at work, I would come home and be unable and unwilling to communicate with anyone else because I was exhausted from essentially pretending to be something I'm not all day. Over the last couple months I've had several meltdowns that have resulted in my hitting myself to the point of serious bruising. Even when I used to have weekly nonverbal shutdowns and freak outs as a teenager I wasn't to the point of doing that much damage. I'm getting a little scared.

I had a nonverbal shutdown for the first time in quite a while a week or two ago. And I was at work. I went to my coworker to try to ask for help once I realized what was wrong. He was safe to go to because his wife and both of his kids are on the spectrum; he has ADHD himself. No one in his house is neurotypical; he seems to understand. Of course, I couldn't actually "ask" for help. I just stood there kind of rocking back and forth and crying and flapping my hands a bit and feeling like a complete idiot. I tried to initiate the speech process at least ten times. I knew which words I wanted. I just couldn't make them come out. When I finally managed to start talking, the words came out in a halting fashion, and I sounded anything but intelligent. "I can't - even - talk right."

I love most of my coworkers, but sometimes I really dislike my job. I work in the social services field. It is not at all a good fit. Recently my supervisor finally allowed me to stop running group sessions. I went to her with a very detailed list of the reasons it was the wrong thing for me to be doing, chief among them the sheer amount of brainpower it takes for me to even attempt to pay attention to everyone as they talk and react, let alone process what's happening before the conversation has moved on. She wondered why I felt it was different from staff meetings, where I usually an at least somewhat active participant, and I told her it was a very different thing. I am not expected to hold my coworkers accountable for their comments, and I don't pay attention to nonverbals when I haven't got the energy because it is not my responsibility to ensure the subject matter isn't too much for them. At first it didn't sound like anything would change; then she spoke to me a few days later and said she realized it wasn't fair to ask me to expend that much energy on something that way while not getting to utilize my true skills.

The trouble is that my "true skills" are best described as an aptitude for technology. I probably belong much more in the IT department than I do in the environment I'm in now. I'm going back to school part time now for computer science; my supervisor has graciously allowed me to take time from my normal schedule to attend. But I'm concerned because next year I will probably want to go full time and I don't know what will happen. And because things are always changing at work and coworkers are leaving and new ones are starting and I have to do things to help during the short-staffed times because I'm part of the team and I don't know if I can do it anymore (intentional run on sentence for emphasis). Despite the fact that I seem to be somewhat more understood in my work environment now, the fact that I don't do well with change and sudden adaptation in schedule isn't being accepted. Certainly people have noticed by now. It just feels like I'm expected to just "deal with it" because everyone else can. It's not my supervisor or anyone else's fault; they're all great and have done way more for me than I feel like I deserve. I just really want to be understood and am scared it's never going to happen. My supervisor does know I'm autistic, too, and was accepting when I told her, despite it sounding like she wasn't quite sure what to do with the information at the time.

I was officially diagnosed in February of last year. I find myself doubting it because I don't perfectly fit the stereotypical autistic profile, which I know doesn't mean anything as plenty of people on the spectrum don't fit it perfectly either. I also find myself doubting it because the assessment wasn't as stringent as some people's are; it was more question and answer based. I'm sure the psychologist would not have given me the diagnosis if she didn't feel it was true, but I still have doubts. I find myself wondering if I should seek out a full neuropsychiatric type assessment, but am scared I will either find out that I am not autistic, or that I will be told I am in fact autistic but continue to doubt myself regardless. The coworker I mentioned earlier, who is a very good friend, has said he thinks I am "definitely autistic," and I actually cried when I heard that not because I was upset over it but because it felt good that someone else could see it.

Recapping for myself some of the "evidence" so that I remember:
* didn't speak until I was nearly three years old, then apparently started talking in full sentences and "wouldn't shut up"
* went to special preschool to "learn to take turns and play with other children"
* had that typical "uneven cognitive profile" you hear about, with very good language skills and struggling with math (finding out now that while some mental calculations are difficult, the logic behind math I actually understand pretty well)
* had basically no friends for most of elementary school and literally no friends for two years
* would play very repetitive "games" with myself where I'd play with water and repeat weird made up lines over and over (kind of hard to explain, but even I didn't really understand what I was doing to be quite honest)
* could not detect sarcasm at all through high school and repeatedly took instructions literally ("hand your folders in," not realizing I was meant to put the homework in it first and being the only one who didn't do it properly, for example)
* getting tricked into doing mean things to others by bullies (like flushing the toilet while a friend was in the shower in the school locker room after middle school gym class because I just didn't understand; they tried to get me to put her clothes in the toilet, too, but by then I'd figured out something was wrong and refused)
* could not tell when I was being teased; could sometimes tell something was "off" about the interaction because laughing does not match with the comment "nice pants," and having to be explicitly told that I was being made fun of
* not bothering to shave the back of my legs when I was first finally coaxed into doing it, because some part of my brain didn't register that just because I couldn't really see back there didn't mean other people wouldn't be able to (I've had several similar instances, like believing others couldn't tell I was doing something because they couldn't see me doing whatever it was physically--like reading under a desk or something--when they could probably tell due to my general behavior)
* repeated emotional meltdowns and insistence on eating the same things after school every day
* general food pickiness to the point of teachers calling home asking if I was ok because I would take two bites of something and refuse to eat anymore
* feeling "spaced out" when around many people for long periods and either shutting down and being unable to speak or going into a meltdown and not being able to stop crying for long periods (I frequently froze and would be unable to answer simple yes or no questions)
* eating disorder documented in a particularly obsessive way (had its own binder that I printed out special customized pages for every day and attended to it fastidiously)
* anxiety of a particularly obsessive and circular nature and being completely unable to "let go" of whatever is concerning me until I have completely drained myself of all energy
* a general lack of facial expression that leads people to constantly ask me "what's wrong with you?" or "why are you angry with me?" when absolutely nothing is wrong
* a feeling of the entire environment pressing inward on me and being unable to ignore it or filter it in any fashion on some days; it begins to feel as though I have no "edges" and have to keep moving and touching things or even hitting myself to remind myself where the world stops and I start
* HORRIBLE sense of direction. Horrible. As a teenager I went through a period where I would completely mess up left vs. right, and I still get lost in the small town I've lived in my entire life. The psychiatrist who diagnosed me with ASD suggested I may have NVLD as well
* needing extra processing time to process speech at times and completely missing facial expressions and nonverbal cues quite often (as example, recently I heard a coworker talking about his "overwhelmed" face jokingly with another coworker, and I had seen him in the context he was referring to often and had noticed absolutely no difference from his neutral facial expression; in retrospect, I could perhaps imagine there was a difference, but I have never truly seen one).
* series of special interests over the years: cats, Japan, particular video game characters, programming, Myers-Briggs typology, rats, bats, ASD, and so on.
* inability to take care of everyday tasks. I may work and attend school, but I still live at home and aside from making food for myself every now and then, I don't take care of any household tasks. I can barely keep up with my hygiene needs.
* wearing the same clothes week after week because it is simply too difficult to choose between items and I don't like change
* being able to understand a lot of things in theory, especially emotions, at least passably well but not being able to utilize any of it in context whatsoever; feeling basically "context blind"

I feel like all of this stuff together should be enough to convince me the diagnosis is accurate, but I still doubt myself consistently. Not sure what the point of this whole post actually was anymore. I guess I'm just looking for some understanding and help. I am in therapy. I guess my community mental health program actually feels my case is pretty significant, because they are keeping me on despite their not normally taking my insurance, which I've had since January of this year. I just feel stuck and alone and am not sure what to do anymore. I think computer science is the right move for me; when I'm learning about programming sometimes I get to this place where everything in the world just seems to align and "make sense" in a way it never really has before, and I feel calm for just a little while. Unfortunately I then have to return to the real world and that feeling is gone.

I'm scared about the meltdowns and the fact that I'm 27 and can't take care of myself. My mother is in her mid 60s at this point. I don't know what I'll do when she's gone. She doesn't understand me and didn't protect me from being abused when I was young but she takes care of me and tolerates my crappy attitude and weirdness at least somewhat. I'll have to leave home at some point. I don't know what will happen then.

I'm tired of uncertainty and feeling like I cannot be myself and I'm sick of doubting myself and feeling like I'm a failure or terrible person who just makes endless excuses about everything so they don't have to try. I just generally feel tired of everything and don't know what to do. Sometimes I feel like giving up.

I'm sure there's a lot of repetition in here, and I'm sorry. But thank you for reading.


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Diagnosed with ASD in February of 2017
Aspie Quiz: 156 (neurodiverse), 44 (neurotypical)
AQ: 41
AQ-10: 10
RAADS-R: 190


Prometheus18
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08 Sep 2018, 10:22 am

It sounds like you have a pretty supportive work environment. I'd recommend you just carry on seeking self knowledge and trying to learn living skills.



Sarahsmith
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08 Sep 2018, 11:18 am

I used to have very bad melt downs. I used to need to flap my hands when I felt anxiouse. Then I smoked pot and it cured me of these things. Not sure if it would do the same for you but you could try medical marijuana. It would have to be psychoactive to get the transformative effect.



Prometheus18
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08 Sep 2018, 11:46 am

No offence to the above poster, but I'd ABSOLUTELY avoid taking illegal drugs to deal with your problem. Not only because they're illegal, but because they ultimately make the problem worse; lots of things provide short term relief - alcohol, tobacco, marijuana, even cutting oneself (or so I'm told), but it makes the problem worse in the end, and ultimately comes back to bite one. You'll find that after a while, you become addicted and need increasing amounts of the drug to achieve the same relief. Marijuana abuse is also linked to depression and schizophrenia. You may even end up being forced to commit crimes to feed your habit; I've met many people in this position. There's absolutely no arguments at all for illegal drugs as a coping mechanism, any more than for self harm - which is exactly what drug use is.

You sound highly intelligent; start using marijuana and you'll turn your brain to mush - your mind with it.



aikitsune
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08 Sep 2018, 6:57 pm

Sarahsmith wrote:
I used to have very bad melt downs. I used to need to flap my hands when I felt anxiouse. Then I smoked pot and it cured me of these things. Not sure if it would do the same for you but you could try medical marijuana. It would have to be psychoactive to get the transformative effect.

I'm happy to hear you don't experience so many meltdowns now, but I don't think I'll be taking that route, personally.

Prometheus18 wrote:
No offence to the above poster, but I'd ABSOLUTELY avoid taking illegal drugs to deal with your problem. Not only because they're illegal, but because they ultimately make the problem worse; lots of things provide short term relief - alcohol, tobacco, marijuana, even cutting oneself (or so I'm told), but it makes the problem worse in the end, and ultimately comes back to bite one. You'll find that after a while, you become addicted and need increasing amounts of the drug to achieve the same relief. Marijuana abuse is also linked to depression and schizophrenia. You may even end up being forced to commit crimes to feed your habit; I've met many people in this position. There's absolutely no arguments at all for illegal drugs as a coping mechanism, any more than for self harm - which is exactly what drug use is.

You sound highly intelligent; start using marijuana and you'll turn your brain to mush - your mind with it.

I have no desire whatsoever to use marijuana or any other substances. My brother has ended up in adult foster care following repeated seizures and strokes that were ultimately triggered by a brain injury due to drug overdose; he's lost most of his vocabulary.

Scary and sad things happen to some amazing people because of substance abuse and addiction; I have no desire to become a cautionary tale.

Prometheus18 wrote:
It sounds like you have a pretty supportive work environment. I'd recommend you just carry on seeking self knowledge and trying to learn living skills.

I hope this doesn't just sound like a series of excuses; I'm just trying to explain what I've tried and how my mind seems to work.

I do have a supportive work environment, which is why I'd hate to leave it. But I'm not finding my work terribly fulfilling and it's extremely draining for a couple reasons: 1) the social nature of it requiring I be switched "on" at all times; 2) the fact that it is very noisy and I have very little control over the environment I'm working in, making it nearly impossible to reduce the sensory overload I'm experiencing; and 3) the hectic pace and constant change. I know a little of each of those things will be present in most jobs, but I'd like to think that there are at least some where they are greatly reduced. I'd like to be able to go home not feeling like I have no energy for anything left, but I'm not sure that's possible. It would not be acceptable to not be switched "on" socially, really, but lately I've been finding I've been having to almost ignore people at times just to avoid total meltdown, anyway. I will probably end up losing my job if I can't change something; continuing to do the same thing I've been doing for the last couple years isn't going to work. I'm struggling to manage the most basic things.

In regards to life skills, it's really not that I simply don't know how to do things like clean or wash clothing or dishes or anything like that. It's trying to organize and plan that's hard. Technically, I can plan and organize, but following through doesn't always work. Sometimes it's motivation and sometimes it's simply because something comes up that gets in the way, as generally happens in life.

I've often wondered why I don't have the same amount of relentless planning and routine that some folks on the spectrum have, and looking back at the days of my eating disorder--when I definitely did have lots of plans and routines--it's actually pretty clear: When things either looked as though they weren't going to work the way I'd expected (or actually didn't), I became ridiculously anxious. I became much less capable of performing basic tasks than I normally would be because of whichever thing was filling up my brain that I had to do. And once I have some kind of plan--even now--when it doesn't work out, I become very distressed. As of right now, I have the choice of experiencing low-to-moderate grade anxiety all of the time due to not knowing what's going to happen, or experiencing little or no anxiety sometimes and debilitating anxiety whenever something goes "wrong," which is often.

Cognitive behavioral interventions do not work. Trying to tell myself that it's really not a big deal or that I can figure out some other way to do whatever it is (perhaps an even better way than originally planned) only makes it worse. Telling myself the feeling will pass doesn't help. Telling myself that all of this normal and that nothing is actually "wrong" makes it worse. Trying to do any of these things literally feels like trying to remove the thought from my brain--along the lines of trying to pull a healthy tooth without administering a numbing agent first. It intensifies an already imminent meltdown. Meditation can help reduce general anxiety, but it spikes back up to that same intense level when things go wrong and stays there for a long time. For me, meltdowns can sometimes be delayed, but never avoided. Delaying them creates serious problems--shutdowns due to increasing internal pressure from trying to "hold it down," and the resulting meltdowns after this are scary and dangerous to me when they finally happen.

Even my supervisor has noticed that I do okay for a few months at a time, then start to become "very overwhelmed" for extended periods. It's depressing that I'm trying so hard to look "normal" and failing. Trying to tell myself it's okay things aren't going as expected or planned is one of the biggest reasons why I think these dips in functioning are happening, but because my job has a schedule and that schedule is frequently disrupted, it's impossible to avoid having to do so. And failing to do so would result in behavior that would not be acceptable in the workplace. I'm kind of stuck here and I feel like an idiot for not being able to do something about it, but I can't just make my brain do something different.


_________________
Diagnosed with ASD in February of 2017
Aspie Quiz: 156 (neurodiverse), 44 (neurotypical)
AQ: 41
AQ-10: 10
RAADS-R: 190