Symptoms Worsening

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When I found out I had AS at age 23, I was relieved, and I started to get help immediately. I had never been able to do anything on my own and never had any social success of any sort, but I was lucky enough to find someone to teach me social skills and I learned quickly. I've always been good at mimicking, impersonating, and copying others, so I blended in fairly well even when I didn't know what was going on with me (I spent my whole childhood insisting to parents and therapists that something was wrong with me, but they all thought I was making it up for attention). With the training I improved very quickly. I went from living in a group environment (I was working at a boarding school) to living in an apartment with a few flatmates, then to just one flatmate, and then finally a year ago I moved into my own apartment. At first it was terrifying to be on my own without an in-house safety net, but I quickly got used to it and realized that living alone is far better for me. I have complete control over everything, total privacy, and silence whenever I want it.

At the same time I moved into this apartment, I started a new job as a preschool/kindergarten teacher at a Montessori school. Last school year I did very well. I worked about 30 hours per week at the school, plus I did private English lessons in the evenings with adult students. It was a lot of work, but I managed it. I made enough money to pay all my bills and expenses and even save just a little bit per month. But I was unhappy with all the traveling I was doing - my job is an hour away from my apartment, and after working at the school I'd have to travel all over the city for my private lessons. By the end of the school year I was fed up and decided that for the next school year I'd work full-time hours at the school and give up the private lessons.

I thought it would be easier this way, but it's not. It turns out that working a part-time shift at the school and then moving to a different place gave me some time off to "reset" and let my sensory load decrease a bit. Now that I'm going 8.5 hours every day at the school, I'm finding I'm overloaded all the time. The kids are SO LOUD. Even on my break I can hear them and I don't get any real rest from it. To make matters worse, this is not an English school, but a Czech one, and all the other teachers are Czech. My job is to try to teach them as much English as I can manage in a "natural" way. Last year I spoke a combination of English (to teach them) and Czech (to actually communicate with them), but my boss decided that this year, I am not to speak a single word of Czech. She said the parents don't like that the native English speaker is using Czech with their kids when they're paying for an "international" school, so I am no longer allowed to use Czech, and whenever possible I must force the kids to use English with me. The result is, surprise surprise, not that they magically learn English, but that I can no longer communicate with them. They have lost respect for me because the only things they understand are like commands to a dog (sit down, stand up, be quiet, stop) and they don't like it, understandably so. They don't listen to me and when I'm alone with them they seem to sense my sensory distress and inability to control them, and they gang up on me.

I used to love my job but now it's turning into a nightmare. The bus/metro ride home each day is almost always the last straw, and by the time I get home in the evening, I very often burst into a full-on meltdown (slamming my head against the wall and sobbing) or, on a good day, am simply too exhausted to do anything I enjoy.

When I first found out I had AS it seemed like, great, here's the issue, I'll learn and study and practice and get better. And I did. Everything was better. I even have friends now, real ones that I found and bonded with all on my own. But now, for the first time, I am really feeling disabled. I am realizing that I can't work a full time job. I keep hoping I'll get used to it or find a way to deal with it, but at the end of each week I feel worse than the last one. I no longer do anything on the weekends because I'm too overwhelmed from the week to go out in public. I don't even go to the supermarket anymore. I just sit at home and feel depressed.

I know the obvious answer here is that I have to work less, but it's not so simple. My school is very small and there's only a few teachers. I'm the only one who can work the shifts I work, which means if I told my boss I needed to work less, she'd have to hire someone else to take my hours, which would take time and require a lot of extra work while we trained that person. I'd like to go back to using Czech with the kids but my boss is adamant that it's not the "right" way to introduce them to English. I used to teach mostly by translation (they're too old to learn just by hearing). There may be some people who could manage to communicate with the kids mostly non-verbally, but I'm not able to do that so I'm at a severe disadvantage. My coworkers end up having to solve most of the problems with the kids and I sit on the sidelines feeling useless.

My boss knows I have AS and is a very nice, understanding person, and an incredibly accommodating boss, but I don't know what she can really do for me here. I don't want to quit my job or leave this school (and I absolutely need to keep making a minimum amount of money or I lose my visa - and I can't rely on government help for money because I'd also lose my visa if I told them I have a disability), but I know that if I carry on this way, something is going to break. A little over a week ago I had my first full-blown meltdown right in the middle of the day at work (fortunately I managed to escape into an empty room first so no one saw me). The next day I had to take diazepam to keep myself under control. What if next time I don't manage to get away in time? What if it happens in front of the parents? How will the kids react if they see a teacher break down?

I just don't know what to do. I know I should talk to my boss about it and discuss possibilities but I'm surprised to realize that I'm embarrassed and ashamed. Writing this down is the first real admission I've made that I really am disabled. That no matter how hard I try, there are certain things that I will never be able to do. A person in a wheelchair might be able to climb Mt. Everest, but they will never be able to walk. I have been able to live an independent life, but I'll never be able to handle these normal things. On top of that I'm feeling some pretty intense loneliness and realizing that I'll probably never even be able to have a real relationship. I've gotten so used to living alone that I can't imagine I'd ever be able to share my living space with anyone ever again. Even having visitors over freaks me out and makes me feel invaded. I fantasize about simple things like cuddling or hearing someone say "I love you," but I can't imagine any possibility for that to happen in reality.

I guess my biggest fear is that this worsening is not just because I'm working too much. What if I really am just getting worse? I've heard that it can happen. What do I do if I manage to work less but I don't get any better?

I've even thought about seeing a doctor and getting a prescription for diazepam or something similar (very easy to do here), but all that stuff is highly addictive and quite dangerous. I couldn't take it every day without creating even more problems.

I'm not sure what I hope to get out of posting this, but maybe I just need to write it all down. I guess I need to think of exactly what to say to my boss. And if I do manage to reduce my working hours, I need to find a way to make up the income. I'd like to sell art as a side job, but I'd need a lot of time and calm to produce anything worth selling, and money to buy the initial supplies. Then there's the ubiquitous issue for artists of finding someone who would actually pay money for my art.

Sorry for the long post, guys. If anyone has any ideas, I'm definitely listening.

Last edited by kotshka on 11 Nov 2012, 3:57 pm, edited 1 time in total.

I highly doubt your symptoms are worsening. I think it is precisely what suggested: overwhelming job with no opportunity anymore to "reset". So it SEEMS like you are getting worse, but it's unlikely that that is what is really happening. It seems like you might be experiencing symptoms you simply didn't have to deal with last year. Change is difficult for most (or all?) people on the spectrum, at least to some extent. You've experienced change when going full-time and leaving one job and also in the manner in which you are expected to perform your current job. Of course this would be overwhelming, and it is affecting you. Is it possible to go back to what you were doing--part-time work with the english teaching at night?

And I REALLY don't mean this in an offensive way. You said you "found out" about Aspergers about 4 years ago, but according to your profile you are undiagnosed. I mention this because there could be other conditions besides Aspergers that cause certain symptoms, and it might not be AS impacting you at all. Since you ARE being impacted by AS or something else, it would be beneficial to get a diagnosis if this is possible to be sure that you can get proper treatment when/if needed.

Littlelily613: There is no question that I have AS. I was "unofficially" diagnosed in an informal context (but by a specialist), but I specifically declined to go for an official diagnosis because it would do me no good and a world of harm. I meet every single one of the criteria for AS, and watching old home movies of myself as a child shows me not making eye contact, rocking back and forth and making other weird repetitive movements, gestures, and noises, showing absolutely no interest in anyone else and then suddenly bursting into long-winded speeches about some obscure topic that no one else had the slightest interest in, rambling on in monotone like a robot... There's no doubt in my mind about this. I was incorrectly diagnosed with many other things during my adolescence, including an official (on paper) diagnosis of depersonalization disorder with derealization (I still resent the old quack who gave me that one) and several spoken-only "diagnoses" like OCD and borderline personality disorder. (When I say "spoken-only" I mean various therapists/psychologists/psychiatrists discussed with me that they were "reasonably sure" this was my problem, but it was never officially put on paper and each suggestion was eventually rejected.) Nothing they ever suggested really seemed like it fit, though, nothing really explained it all, and reading accounts written by people who had these conditions convinced me that I did not have them. When I finally heard the description of AS it was blatantly obvious that this was my problem as I fit the criteria precisely, and I was furious that no one had ever suggested it before. In fact, it seems completely absurd that no one realized what was going on, especially after watching those old home movies.

I really don't like that this web site forces us to list whether we are "diagnosed" or not. After all those years of BS from all those different doctors and "experts" and "specialists," I hardly trust the opinion of any of them over my knowledge of my own mind, and I don't see why I have to advertise to the whole site whether I am diagnosed or not. I either have to lie and say I have a diagnosis while officially I don't, or I have to let everyone here know and possibly judge me based on the fact that I don't have this piece of paper. I have a lifelong history of social issues, am to this day unable to read facial expressions or body language, I experience severe sensory disability (worse now than it was before, but it was always worse than I've heard other aspies describe - my parents always thought I was making it up and I always thought that people must all be deaf because their ears didn't hurt all the time like mine), and I have terrible motor skill problems. If I don't concentrate I find myself rocking back and forth or bobbing my head or flapping my hands or making noises with my mouth... I spend most of my metro rides home with my hands clamped over my ears and tears streaming down my face.

I know you aren't trying to be offensive, but trust me, I'm absolutely sure about AS. Anyway, I can't take advantage of any kind of benefits or help even if I had a diagnosis, because if you have a disability on record you cannot have a visa in this country. Visa applications are accepted or rejected based almost solely on finances, and if I can't earn enough money without state support for them to collect taxes on, they will not let me live here anymore. This is my home. I can't risk that.

In any case, no, it's not really possible to go back to what I was doing last year. By the end of the year doing all that was also getting worse and I was having a harder and harder time keeping up. I was getting up at 5:30 each morning and getting home after 7:30 at night. Each day I was a little bit more tired, and by the end of the school year I could hardly stay awake at either of my jobs. I had hated teaching private lessons for three years and I was determined to stop completely. I'm relieved I no longer have to do that job. I like working at the school much more, it's just so loud and so difficult now with the language restrictions. The only thing I can see working for me now is to work a bit less overall and have more time to myself, and hopefully find a way to make a bit of extra money on the side. I wish I could find some proofreading or translating work, that would be perfect... But so far no luck. : (

Anyway thanks for the response. I hope I don't come off as too negative, just feeling rather frustrated and hopeless at the moment.

EDIT: Oh, also regarding my having AS, my youngest sister (NT) has a 3-year-old daughter who is diagnosed as low-functioning autistic. Her difficulties are pretty severe and they have to go to a lot of therapy trying to teach her ways of coping without being able to speak, and trying to stop her from constantly slamming her head against the wall. So it's in my family for sure.

I think you missed my broader point, so I eventually stopped reading the rant. Sorry if I missed something important in the last 2 or 3 paragraphs, but I only read rants for so long before I get bored.

I was self-diagnosed for a long time as well. I WAS NOT saying you do not have AS, just saying that there COULD be other things wrong as well. I was not just implying it is you specifically. The same applies to many other people. Anyway, you say you have it, and it is likely the case, so MY POINT can be found in the first paragraph I wrote.

Your schedule sounds eggstremely stressful. I don't think that I could handle your schedule or your job. I think that you need to cut down your hours, or else you could have a long-term shutdown and not be able to support yourself anymoar or do much of anything else either.

Um, a really straightforward suggestion, but is there a reason you don't wear earplugs that just reduce the volume some? Musicians earplugs are a style that is useful for this (they're meant to have reduced volume but not distorted voices).

People would see that you are wearing earplugs if you do this, but would this be a problem?

OK so you missed this part then:



I wasn't trying to rant. I just wanted to list all the information all at once so I could settle that question immediately rather than have to defend my "undiagnosed" status again and again, as so often happens. If you read it as a rant then it was only because you expected it to be one - there was no hostility intended in anything I wrote. Was just trying to include all the information to settle all possible arguments all at once. There comes a point when you get tired of the same conversation over and over again, and when someone asks you that same old question again, you just answer all their possible objections right at the start to try to save time.

Tuttle: Actually, I was trying to simplify things by saying that the problem is volume. Really it's a bit more complicated than that. At times they are quite loud, but actually most of the time they are reasonably quiet. The audio problem is mainly just that there are so many voices going at any one time. Even if they are all quiet, it's too much to process. By the end of the day my brain is so tired of trying to sort it all out that even the tiniest noises start to hurt my ears. Add to that the overstimulation of the bright lights (laws here require classrooms to be lit up brighter than the sun), constant social interaction with the other teachers, constant movement, and ever-present possibility that I will have to jump up and stop two kids from beating on each other or help a child that's gotten hurt, and it really is just too much.

I have started using headphones on the way to and from work and during my break, with relaxing music to try to help soothe me, but I'm still unsure whether it's actually helping, or if the extra noise right in my ears is really only making things worse. I'm planning to buy a better set of headphones this week with much better quality so I can keep the volume down low while still blocking out outside sound, which I hope will help more.

I guess I really need to just suck it up and ask my boss to reduce my hours. Whether it actually works will depend on whether we can find someone else to take my shifts. If I just reduce a little bit, I would still get enough money to meet the minimum, but have a bit more freedom for myself at least one or two days per week. I guess I'll have to try it today. Just have to think of the right way to say it to my boss.

No, you still missed my point. It had nothing to do with you maybe implying I was being negative (which I wasn't). Nor did it have anything to do with you going back to your old job (that was simply a question). My point was, I don't think your symptoms are worsening. I thought it was pretty clear since it was the first sentence I chose to use.



You may still have to for people that don't read this particular thread, if they ask and you feel the need to defend it.



A rant is going on and on about something. That is what the post was, IMO.



I never suggested you were being hostile.



There comes a point where you get tired of people who cannot discard the advice that does not apply to them and realize that some people are only trying to help.

I still sense that you think I am trying to be negative or argumentative towards you. I know you were trying to help. All I was doing was trying to answer all your questions and explain myself. I did get the point you mention from the first post, but it wasn't a question and it didn't occur to me that you expected me to respond to it. I know I tend to be too wordy so I didn't want to add an acknowledgement on top of all the other writing (which you say you didn't read all of as it is) which seemed more important to the current situation. I just answered your questions. I'm very confused about why you wrote "There comes a point where you get tired of people who cannot discard the advice that does not apply to them and realize that some people are only trying to help."

I somehow thought the internet is supposed to be the one place where we can all communicate without fear of misunderstanding due to our lack of nonverbal skills. Where you can write what you mean literally and have it taken as literally as you meant it. Seems even verbal/written language can be just as bad, unless we load it full of smilies to make sure our tone is not misread as negative when it's not meant to be or write novels explaining our motivation for choosing each particular word or phrase. Even then, I've had sincere smiley faces mistaken for sarcasm, and no one wants to read long posts.

I still don't quite understand when you say that post was a rant, though. I read back through it, and to me it seemed like a fairly concise list of all the reasons I'm positive about my officially undiagnosed AS. Maybe I should make a bulleted list instead. I know that I will have to answer the question again in other places, I just meant I wanted to settle it for this particular thread. The "rant" as you say is my standard answer for when my AS is called into question. When someone questions it, it tends to turn into a long conversation where I have to prove this and that - so I've just compiled all the reasons in one shot so that I can settle that question and move on to what I really want to talk about. Seems to have backfired this time...

Anyway, I did some serious thinking today at work. I left a bit early (this is the only day of the week I can do that) and it felt so much better. No meltdowns, no crying on the metro. I think I can divide my current issues into two main problems.

1. I'm working too many hours without a chance to "reset"
2. I can't communicate well with the kids due to the language barrier, so they have lost their respect for me and no longer listen to me, making work more stressful

Regarding 1, I have decided to write my boss and request a reduction in hours. I'd like to reduce by at least 5-6 hours per week, whatever we can manage. I don't know how she'll respond to that but I think if I make it clear that this is necessary, she will try to help me.

Regarding 2, I feel a bit of guilt on this one. I know that really when my boss hired me, she was looking for someone who could teach the kids English without using translation, without speaking Czech, just using repetition and non-verbal communication to get them to understand. She knows now that I have AS, but she didn't know that when she hired me and had no reason to expect that I would have any difficulty with this. I had told her that I had worked with international kids plenty of times before with no trouble - which is true, but it was always either in an English-language environment so they were learning by immersion, or else I spoke the kids' native language and could communicate with them that way. It didn't occur to me that I would have a problem just speaking English to them until I had already been working here a while and really started to realize that these kids knew NO English, and several of the other teachers only speak Czech, so there was no chance of immersion. I started using bits of Czech here and there to get them to simply acknowledge my existence, otherwise they just ignored me and went to the Czech teachers. By the end of the year we weren't using much English at all, just a few words here and there... But I was able to TALK to them. Now there's a wall between me and them, largely because I have a disability when it comes to nonverbal communication which cannot really be helped in this context.

Now I feel like if I tell my boss I'm not able to continue without using Czech, she will regret hiring me. She will wish she had chosen someone better-suited and resent having to accommodate someone with a disability that directly interferes with the job. I don't think she would fire me, but it would change the atmosphere at work dramatically.

One of my colleagues today pulled me aside and told me I should just use Czech with the kids when I need to, and just not in front of our boss or their parents. As long as I push them to use English as much as possible (and most of them want to anyway), there won't be any obvious difference to the Authority Figures regarding my teaching them English, but I'd actually be able to TALK to them again and maybe I could get some of that respect back. I'm unsure if it's the right way to do things (what if I still don't get the respect back and the only result is they stop bothering with English at all?) but I'm considering it, at least a little bit.

Part of me is still afraid that even if work gets better, I won't get better, although I know that it's probably true that I'm not really getting worse and things should get better if the stimulation levels decrease. I really hope so. I can't imagine going on like this forever.

Not really, I just don't know why you won't take my original point and move on. Either you accept that I believe your symptoms are not worsening or you do not accept it. There is really nothing else to discuss, now that the other issue has been resolved. And now we shall move on. Or I will at least! I do hope your job situation improves though!!