Unexpected changes

If I have a complex but routine task to perform, I need to have an order in which I do it. The more complex and routine, the more I need that order. When I worked for the real estate agency a few years ago, I had a process for taking, entering and distributing listings. If that was interrupted or changed for any reason, even if the outcome was the same, I got very upset. Which was disturbing and probably confusing to those around me.

It can be managed. If I know that something will be changed in advance, I can game out the results, and if they'll matter or not - and how to make things work the way they should. I can also change routines if I learn a better/more efficient way of doing them. In fact, that can be fun. So long as I initiate the change or have advance knowledge of what the change will be or just that it will happen, I'm okay. A surprise is not a pleasant thing. Neither is not getting information in a timely way - or at all, as has happened. If my job needs this information, it's very frustrating when I don't get it. I want to do my job correctly.

Last week, I knew I had a shortened week because I was going on a weekend trip starting Wednesday night. I knew I had to make sure there was food to last until Monday for all the residents, especially for the diabetic individual dependent on me for everything. This, I knew, was possible.

Monday afternoon, I learned that this was not the fact. That all of the individuals would be going to the country for a vacation from Sunday to Wednesday, and therefore I would need enough of M's food to last until then. I learned this just as I was about to leave on Monday, and I was also LATE on Monday. If I'd arrived and therefore left on time, I wouldn't have found this out at all.

Now I had two days to do this sort of thing. Now, I actually was fairly on top of things, but it was still bad to learn this so late - presumably my house manager knew the week before. If not, it was really poorly done.

To make matters even worse, I got sick with a cold. My ability to function decreased. I slowed down. And I couldn't take any time off because of the trip. Tuesday was okay - just the beginnings, you know? Not bad. I was even able to drive 90 minutes to a neighbor's son's wedding. Wednesday, which was also the night we'd planned to drive to the country inn, I ran a fever plus my nose was on permadrip. I know everyone is different in this regard, but for me, that's the worst part of a cold. A runny nose just makes me totally miserable in a way that nothing else, even a bad cough or sore throat, can.

We decided to drive to the inn the next day, of course, and I took a car service to and from work instead of walking as usual. I could barely stand. My house manager merely told me to work with gloves (which I did, plus constant hand washing and purification.) And I was missing food. I'd taken out a lot of chicken to thaw the night before and it was GONE. It wasn't in the fridge, on the counter or even back in the freezer. I felt like I was going nuts.

I needed that food. I had some still frozen I could thaw in the microwave, but to lose food is just bad. I did take out the extra chicken. And then we found it. While I cook in one kitchen, there are actually two apartments, each with a kitchen. And it was in the other fridge because there wasn't room. And no one told me. And I was sick and non-functional and stressed and there was information I needed and I didn't have it.

I got through the day (I don't know if I made sufficient food for all the guys, but I did make enough for M) and got home and to bed, and was well enough (read, no fever and my nose had stopped running) to drive the several hours to the inn, and then another half hour to see my favorite Shakespeare comedy Love's Labors Lost, even if we took one of my least favorite people along with us. So it all worked well. And while we didn't get our normal room, we got a better one on the first floor. No complaints.

But I still arrived stressed and tired and determined to do nothing on Friday. And on Friday, I began to write this blog post on my phone using an app. And I lost the blog TWICE. Not only was this stressy and annoying but just writing about the events made me upset. Still happening. I've stimmed a few times while writing this. Not a relief, you see.

So, when I let this other person drive my car (and my husband and a third person) to a museum, and there were problems right away, I got very angry. I got even angrier later on, as I was helping in the kitchen, when my husband finally returned and it turned out this person got into a fender bender, scratching the car - my MOTHER'S car - and then, instead of going home, went to a second museum. I still cannot believe he did that. And he is NEVER driving my car again. He also spent all of Shabbat avoiding me, and when pressured (wanting a ride home, which he did NOT get as we had plans for dinner) gave a very unsincere apology. I'm over that anger, though.

I was very able to get a handle on that emotion.

Things in my brain

I know it's been awhile, but I realized just today that my therapist is on vacation for a couple of weeks and there are things I want to talk about. This way, I can (yes, you are ALL my therapists now. You're welcome.) talk about them so I won't be obsessing over them until she returns and so I won't forget them.

One thing happened just a couple of weeks ago, while we were having Shabbat lunch at a friend's house. We knew most of the other guests because this family has regulars. I think we currently count. However, there were two who were unfamiliar, a father and teen-age son.

As soon as the young man opened his mouth, I knew he was on the spectrum, and further along than I am, or less socialized, or both. I'm over thirty years older than he is and I'm a woman and these make a difference in how a person on the spectrum presents.

First, he was loud. He wasn't shouting, but it was at an inappropriate volume. This is a tell. It's something that those who know me also have to endure, although I hope I'm not as loud as he is. I don't know.

That's right. I do not know my actual volume, or rather most of the time, I'm not conscious of it. I can make an effort to change it if I'm in a situation when being louder or softer, but not shouting or whispering, is necessary or appropriate, and keep it up so long as I'm in that situation. I can also adjust my volume when someone else tells me I'm inappropriate (usually too loud) but that is very short term.

I am told that most of the time my volume is set on the loud side of normal. I believe them but as the difference is subtle and I can't detect it, I can't do anything about it. My hearing is just fine for a woman my age. I just don't hear the difference between my volume and someone else's.

This young man was set even louder than me. To his credit (I think) his father never criticized him for this, and everyone else took their cue from him. It is very frustrating to be told to talk softer all the time when you can't do it very long if at all, and frustration is one of those emotions that overload quickly.

The second thing I noticed was his formality. He was extremely polite - everyone was sir or ma'am, he said please and thank you. In my mind, he was following the rules of good manners in the way that the other teen-agers present (who had excellent but informal manners)did not need to. THEY had the rules internalized and knew when to be relaxed about them. HE did not, and he chose to be more formal to avoid making mistakes.

Rules are very comforting things to me and others like me. They mean you know what to do in many situations that neurotypicals may understand instinctively. They mean that either you will do the right thing OR if you are wrong, it's not your fault. You followed the rules. One of the best things I ever discovered was Miss Manners Guide to Excrutiatingly Correct Behavior. It gave rules for both formal and informal situations and made interations with other humans easier. It's also one of the reasons I love being Orthodox. There are rules for everything!

I believe he also spoke without a great deal of inflection, which is NOT a problem I have, according to people I've asked. I may be loud but I don't sound otherwise odd. However, I really don't know for sure.

I did discuss comic books with him at one point - like me, he loves them,although he prefers the humorous, not the superheroic.

This leads to another thing. I just finished reading Jim C. Hine's Libromancer,which is an urban fantasy novel which uses books as sources of magic. Which books are - this is definitely a book aimed squarely at the SFF fandom community. I was sad that one of the books he mentioned doesn't actually exist. Recommended.

One of the secondary characters in the novel was described by another, highly empathic, character as "autisitic." This surprised the main character who had worked with this person for years. The empath read autistic people's emotions differently and with more difficulty because they accessed them differently and this occured with the person in question.

This was not presented as a positive or negative for the person in question, just as an obstacle for the empath. The person in question is portrayed as highly intelligent and competent at their job, with a deep love of animals and affection for other humans, as well as a deep love of rules. In other words, it was merely another character trait along with one character's love of science fiction and fantasy and another's need to take of people. They were not less of a person, less of a human. Just different than most, but then most of the characters can also do a form of magic, and that's also different.

I really, really loved this.

Brain reset

We all get triggers, and you can't always predict them.

A few days ago, I got triggered slightly. A few months ago, I had a major meltdown - two days of tears and depression and extra therapy sessions. Horrible, horrible days that I try not to think about much. A similar event happened, but that wasn't the trigger. It was the reaction of my twitter feed to the event - pretty much what had happened the first time. And seeing it was a physical shock, much like what happened the first time except that instead of feeling like a gut punch, it felt more like a poke. I can't actually find better words.

And my brain wouldn't let it go. I could even feel the same emotional reaction building. But, maybe because it was much, much less of a reaction, I could deal with it. I could reset my brain.

I turned off Twitter - turning off the app entirely so I wouldn't even see notifications. Then I walked to work - I have a fifteen minute commute on foot, one of the things I most love about my job. On the way, I stopped to do a little shopping. When I got to work, I went right to it, chopping onions and setting water to boil and so on. An hour or so later, I was in a very different place, and so was Twitter. The discussion had moved on, and the physical activity calmed me down.

I'm not sure what those emotions were - anger, maybe. Frustration. Feelings of isolation - I do not like when my reactions are negative when Twitter is positive about something because I feel very alone. It's something I recognize but I'm not sure how to manage given that since it's all emotional, there's a tag to it and not ignorable. However, I have learned something - how to reset my brain. Maybe that will help.

Trapped

I don't think of myself as claustrophobic. I'm normally fine in enclosed spaces, even in crowded, closed-up spaces like elevators and subway cars, even for extended periods of time.

So I'm at a loss to explain what happened to me today. My husband's old synagogue, where he grew up, where his mother is a major force, deconsecrated its old building to consecrate a new one close by - one newly built.

The first ceremony was fine. I got a seat high up - the sanctuary is a theater-in-the-round with a glass topped wall dividing the men from the women on ground level and on either side. Gave me a nice view - my husband happened to sit right across from me. He claims he never saw me, though. The speeches were lovely, especially that by the soon-to-be retiring cantor, who'd been there since the beginning. It was a tad uncomfortable at the end because I put my coat on too early and it was hot, but nothing at all strange. The sanctuary was crowded, which was brought home when everyone stood, but that was only impressive.

The walk to the new synagogue was easy enough - took some time for a crowd of several hundred to file towards the new building, and I was separated from anyone I knew so I was kinda bored, but it was a short distance.

And then I stepped into the lobby of the new building and it was awful. I was inside,completely surrounded by people I didn't know, in a strange place with all exits cut off, and they were playing music. Loudly. In a space made of hard surfaces. I hit sensory overload. Fast. Found myself breathing deeply. Only reason I wasn't stimming was that I was carrying a chumash, a heavy book containing the five books of Moses, so that I could feel like I was carrying on of the Torah scrolls. Except I just felt like I was carrying a heavy book.

The door to the hallway leading to the sanctuary was on the other side of the lobby, so I had to move with that too-close crowd to get there, with that blaring music. I was a light-show short of meltdown. Fortunately, synagogue lobbies tend to not do light shows.

Then things lightened up, as we passed a line of Torah scrolls, which I was able to kiss with no problem and no pushing. By the time I reached that hallway and walked to the end to the women's side of the sanctuary, I was calmer.

Which was full. I could not see any empty seats at all. I can't say I was surprised. I actually expected it. I walked out, and waited for things to settle in and things to start to stand in the aisle. I was a little uncomfortable - probably a remnant of whatever in the lobby - but I could see and hear and that was enough. And then they started closing the doors to the single entrance. Yes, there were panic bars but I didn't see them. I just saw that the doors were being closed and I had to run out before they closed completely. Women were wondering if I were all right, I was so panicked. I made it out in time and found a seat in the hallway and there I stayed.

Crying. I'd run out on my mother-in-law, who was to play a small role and why I was there. I'd looked foolish. And I was angry. This was so poorly managed and I do not know why they closed those doors.

Eventually the dedication ended and everyone left. I went to the other side of the hallway to avoid the crowd and the music started and I was scared to go to the lobby again.

I tried calling my husband (who, it turned out, was looking for me) but he couldn't hear his phone. I did find him and he was very worried - worried enough that we left as soon as possible, even though it meant going through that hell-lobby.

By the time we were back on the subway, I was perfectly fine again.

Was it claustrophobia? It certainly looked that way, maybe felt that way. But I don't know. I just didn't want to be trapped on my feet in that crowded place full of strangers. I really believe that if I'd had a seat - a defined space - I would have been just fine, if bored.

It also proves to me that I should never attend a general admission concert, which would also have the light show to add to the overload. But I knew that already.

Irritation

This is my big new emotion name.

It's not as intense as aggravation, not as mild as annoyance. Or maybe it is. I'm not sure.

It's not actually a physical irritation - the feeling of a label on the back of the neck, or a bunched-up nightgown, or maybe something in a shoe, although it's probably similar.

Just a note here. Many people with Aspergers are hypersensitive to touch. Temple Grandin talks about this for herself in terms of clothing. She has to wash her clothes many times before wearing them, and she wears whatever she can inside out. New clothes are too stiff and seams are an irritation. I am NOT like that. Seams and labels have never been a problem for me. Clothing has to sit right, but I have to assume that's true for everyone. Touch is important to me - very important - but it's on a normal level, I think.

A big part of this is exploring how I'm NOT different from the neurotypical. That feels very important to me.

Anyway, it's a mental irritation, I suppose, although it FEELS physical. It's a pressure, a tension, in the middle of my chest when things get irritating. A pressure I feel a great need to relieve even though I know that doing so might make things harder or hurt someone's feelings, and I don't want to do that.

It can be a habit of my husband's that suddenly bothers me even though it never had before. It can be a perfectly innocuous comment by my mother or mother-in-law. Or it could be the constant "thank yous" by one of the counselors at work. I'm glad to be appreciated - really - but it's my job to make sure his guy - ALL THE GUYS - get fed appropriate and tasty food that they will eat.

In fact, repetition can be the worst kind of irritation. This is a real problem on my favorite social interactive network, Twitter. There are days when everyone I follow seem to be repeating the same thing over and over again. Or when certain groups just keep making the same complaint. Or when the political pundits I follow make the same jokes over and over again, or make me realize that I don't agree with them about every thing.

And the pressure on my chest tells me to say something. To show them that they are WRONG or stupid or something. I don't interact much with the political twitters, so there is less temptation for that, but nothing to prevent me from saying something in general - nothing but ME.

The results are usually not pretty - because what I am doing does not relieve the irritation but just makes a fight. But the other choice is to feel the need to say something and just get more frustrated. And angrier. And that can lead to overload, but at least it's not in public (my poor husband, though.)

I am learning to not give in anyway - to write tweets and delete them unsaid. When I do that, it's difficult but I don't hurt feelings, I don't pick fights and I don't hear ugly things about something I care about. So it's better, but I'm also frustrated because I don't want the consequences of saying what I think, but I very much want to speak. I'm not bad with words, but somehow, using them at that point is never good. And this, too, is irritating.

It did pay off in December when I didn't allow myself to say anything much about the monster holiday that eats all in its path. :) I actually found myself calmer just because I didn't pick any fights. It wasn't easy but it was the best December I'd ever had. So I know this is the best strategy right now.

Some of you are probably asking why I don't just ignore those things? Most people do, I'm told. There are things I can ignore. Innocuous things, like talk of football or movies or tv shows I don't watch, or musical groups I don't follow. Things in which I have no emotional stake, I think. Or haven't given an emotional tag of some kind.

Emotions are pesky things. Vulcans are wise beings.

But if I've tagged it with an emotion, I can't ignore it. At all. I can't ignore Christmas. I can't ignore mention of a certain guitarist. (Or of a certain singer but I WANT to pay attention to that.) I can't ignore Israel. Some are important to me, some are irritations. And I can't filter it out because once it gets my attention, it doesn't lose it.

I believe shades of gray exist, but I don't experience them. It's on or it's off and there's no off switch. There's only covering my eyes maybe. And so sometimes I sign onto twitter and I'm hit with a series of things that irritate me.

There's a solution. It's called leaving. Turning it off. It's not easy - twitter is an addiction. But since I can't control what irritates me, or make people stop talking about things they're interested in, I can at least control when I see it.

It's also irritating, but I'm not going to blow up over it.

Naming Names

Emotions are funny things to me - they just take over, sometimes out of nowhere. Even when I know WHY I'm feeling something, even when it's positive, it can sometimes be too much to handle.

The other day, we discovered that one of my favorite Gilbert and Sullivan operettas was going to be performed in a couple of weeks here in NYC. Since my husband is also a G&S fan and had never seen Yeoman of the Guard, he went on line and found ORCHESTRA seats. I've never had orchestra seats to a show, and it's been decades since I've seen a Gilbert and Sullivan and I was tremendously excited. So I bounced on the bed. Yes, like a small child, and probably for the same reason. Children jump around and bounce and so on when they're excited because they are overloaded with energy and it has to go someplace. Adults know how to handle that energy (and maybe are too jaded to get so excited. I don't know.) BTW,I didn't stand up and use my bed as a trampoline. I just sat and bounced. I feel the need to say that. I haven't used a bed as a trampoline since I WAS a small child. I don't need to break furniture or myself.

I didn't need to figure out what I was feeling then, just that it was good. If something is good, why worry about what it is? Yes, I was a bit overloaded but the outlet was fun and the reason was happy and it didn't matter. I probably could name the emotions if I needed to, but happy is enough, right?

Today, though. Today was something else. Things to note - I was feeling pretty good. Nothing was irritating me physically, I was comfortably in my own home with a good book and no responsibilities beyond making sure Shabbat lunch was warmed up in time. I skipped shul so I could decompress from the trip we took over New Year's weekend. Even my blood sugar was cooperating.

At the end of lunch, and more or less general chatter, I happened to see one of my Chanukah presents - a critical copy of Love's Labor's Lost, one of my favorite Shakespeare plays. I was explaining WHY I like this relatively obscure and rarely performed play - that the ending totally transforms the play from a farce into something else and that feels very modern and interesting to me - and I paused at what was to me a dramatic moment. And my husband chose to fill that with an out-of-context and distracting quip. And I got disturbed and told him why and...instead of letting it escalate he stayed quiet. Only that didn't help. At that point, though, nothing he did would have helped.

I got more disturbed, even through the long grace after meals. I went to our bedroom alone and tried to sort it out - tried to put a name to what I was feeling and to see if that would make a difference. Because I so much...stuff inside my head that thinking was hard. There's only so much room in my head, and it can get crowded in there. I couldn't concentrate on my book, either. And putting a name to emotions is not an easy job. I cried a little and I hit the bed and then the names came.

I was angry and frustrated (two emotions. Even worse.) I had been interrupted, my point had been lost and I felt belittled. I had words for the feelings and for why I felt that way. So I started talking to myself - telling myself this is what I was feeling and the equally frustrating thing that I had no outlet - I could not figure out a way of defusing them.

And I could say so out loud, and Jon heard and said he understood why. He'd apologized earlier but I literally didn't hear. Entirely possible with all the noise in my head. And he offered to let me hit him (not that I would have at that point.) But the noise started to fade. All the things I needed to do earlier didn't seem meaningful. And I could read. And a few minutes of reading later, it was gone - all the anger and frustration defused ITSELF. I probed for it in my mind and it wasn't there. I could and can remember it being there, but it wasn't there anymore. It was QUIET again.

This was NOT a meltdown. This was just being angry over something maybe worth being angry. I don't know. I certainly hope so. But I could have fed it, obsessed over it, made it bigger. I've done that. By naming it - you know those stories? Where true names have power, so magic workers (good and bad) hide them? How the miller's daughter vanquished Rumplestiltskin by saying his true name? I found the true names and they left me alone.

I've always known emotions had names. I just didn't know how to apply them.

Defining Some Terms

Let's define some terms. Because I'm gonna be using them and I want to be clear on what they mean to me.

I'm going to start with the name of the blog itself - "Differently Wired." I chose it because that's what I am. My hardware (well, my wetware) is different than most people. There is evidence that the frontal and parietal lobes of the brain develop in a different way than for neurotypical people. I know the article uses "abnormalities" but although it's meant neutrally here, it's a rather loaded term. So, different. Not the same as most people. Which, yes, is what abnormal means, but it has negative connotations.

(Sidenote-I just used the term "neurotypical", and I've had lovely, well-meaning people tell me that "no one is typical." Because to them, I suppose, "typical" has the same sort of loading as "normal." But to me, it doesn't. A neurotypical person is someone whose brain has developed more or less "normally" - the way the majority of human brains develop, or at least within a certain range. They do not have perception problems; if they have social difficulties, it's of different origin; they do not exhibit the same behaviors as people like, well, me. Of course, neither do I, all the time. There's diversity everywhere.)

It's not a mental illness. It's a physical difference that results in a range of issues and behaviors that can make life interesting and sometimes inconvenient. And sometimes maybe, with an ability to focus on small details, or to see patterns or maybe just perceive more (or less) than neurotypicals, convenient. There is a price for both us and those around us, but the other thing, this is how life is and this is how I interact with the world.

It's not caused by upbringing. My mother is one of the warmest, kindest people I know, and yet she has at least two children on the spectrum (and possibly all four. I'm looking at my father a"h.) The whole vaccination thing is a complete fraud as admitted by the original "researcher." And let's not even talk about mercury poisoning, which Aspergers doesn't even resemble.

It's physical. It's no one's fault. Of course, so are many mental illnesses and this isn't a judgment of them. Heck, I'm prone to depression. Not organically so far as I know, but it's still real. It's why I started seeing a therapist in the first place and I am incredibly grateful that I am.

A final term I'm going to use frequently (or so I suspect) is "meltdown." Every so often, something pushes me into overload. I'm usually already tired or hungry or maybe crampy, or otherwise irritated, or otherwise stressed. And something else happens, usually something that makes me angry. Or the irritations reach some sort of critical level. And I can't escape the situation in time or at all, or my logic circuits stop working and I am unable to see my way out, and I, well, melt down. I yell, I cry, I shake. I rub my hands. I flinch away from contact. I refuse to listen to reason - and I know I should even as it happens. It's awful before, during and after - it's horribly embarrassing afterward because an adult should not be acting like a child. And those? Are the good ones. Those END when I get fed or left alone or am removed from the irritation. My nerves stop buzzing and I'm embarrassed but fine.

The bad ones happen, thank goodness, far more rarely. Those are the ones I can't predict AT ALL. I'm usually in an emotional state - usually negative - but not at a point where I'm close to one of the "good" meltdowns. But something triggers me like a punch in the gut, something I didn't expect. And I'm crying and shaking and rubbing my hands (which I'm doing now, when I'm not typing, just at the memory) and it lasts for hours, and even when the worst stops, I'm still on edge, sometimes for days. My nerves just buzz and buzz, I can't sleep and it's horrible.

I'm using "I" because other people, other women, on the spectrum experience these things differently and react differently. This is how Deb acts, and has acted for her entire life although I didn't have a name for it until now.

(Okay, one more term. Stimming. You may know the stereotypes - the autistic child rocking, or flapping his hands, or maybe jumping. These are rhythmic motions that are actually soothing to frazzled, overloaded nerves. I don't do these. They don't bring me comfort. I rub my hands. It can look like wringing or like I'm trying to remove a layer of something (I'm not OCD and I don't think my hands are dirty) or just like I'm rubbing my palms and forearms. My therapist says it's soothing but I don't know. It's just something I find my hands doing and that they NEED to do. I'm very tactile. Texture and touch are very important to me. This is a concentrated touch, I guess. This happens at emotional moments, both positive and negative, if it's an emotion I can't handle well. Or name. Naming emotions is HARD. So, I stim.)

Intro Post - Wired Differently

This is a blog written by me for me. I'm a 49 year old woman (as of this writing - well, I'll always be a woman, but the age will change) with Aspergers Syndrome. I am fairly high functioning - I have a job, a home, a husband, friends. I'm involved in social and religious organizations. Many people are surprised when I tell them I'm on the spectrum because I'm good at masking it. At least for a time.

While I suspected I was there for a long time - my oldest brother is severely autistic and I believe there is a genetic component; I've always scored high on the popular tests like the Wired one and I always knew I was different - having it be diagnosed has made it feel very real for me.  And has enabled me to work with the issues it creates.

Please note - I don't want to use it as an excuse but as a way of understanding why I act the way I do sometimes, and how to perhaps change things. Or to live with it if I can't. This self-knowledge has already led to things being a little better.

I'm writing this for me to make order out of my chaotic brain. I'm also writing it because over the last few months, I've discovered other blogs written by women with Aspergers, and this has helped. There isn't much out there for us.  We're adult women, not little boys, and many of us have not been diagnosed until recently. We present differently than little boys both because of our age and our gender. I'm not the only one who learned to mask. So the blogs helped me a lot. I got information and the knowledge that I wasn't alone. It's all anecdotal but at least it exists. So I'm going to add my own anecdotes because we're all different - different sensory issues, different ways of dealing with the world and ourselves, different triggers - even if we have a lot in common. Maybe someone reading this will find I have similar issues and can use my solutions, or give one to me.

I intend this to be random - maybe just a description of a day, maybe a topic that I need to talk about, maybe a dissection of my latest meltdown. And when I get bored, I'll stop. But that's what this is right now.