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Choose wisely

I’m going to try to blog a bit more often. Most times when I feel like writing a post, I can’t remember which e-mail I need to use to log in. Turns out it’s the most obvious one. Remember this, future me.

I have pretty much not spoken to friends in more than a month. Two or three months at least, for most of them. Sometimes I wonder if we’re even still friends – I mean, how do you know?

So here’s what happened. I got a job. Yay, right? Well yeah, I do feel like I have stuff to do now and it’s helping me structure my days more, which is good because lack of structure usually sets me off. And it’s kind of in customer service, but mostly I’m just cleaning things. This is when I’m thankful that my longest special interest has been theatre and acting. Interacting with customers isn’t too hard because it’s usually the same script over and over. Same with coworkers.

But those superficial interactions have basically been the only social interaction I’ve had for months, except for one friend who was actually really wonderful when I was injured last month. This is why: work is taking up all of my social processing power. When I get home, on some level I know I haven’t talked to my friends for a long time, and some part of me might even miss that, but I don’t have anything left to actually try and set something up. I’m prone to cancelling things last minute at the best of times. Now, I can’t even bother to initiate. And on the other end, no one else is really trying either.

This is when I realize I’m different from other people. Judging by their facebooks, at least. I think neurotypicals would at least try to socialize once in a while. They would want to. And I’m not saying I don’t want to socialize at all. But I’m kind of… content? by myself. I go to work, I come home, I watch TV or play videogames or write plays or read books. And I feel myself coming up with a lot of judgement, like I’m some weirdo because I like being alone. “Who likes being alone?” My judgey part says, wondering why I’m not like everyone else.

Well you know what? I do. I like being alone. This is not to say that I don’t want anyone to talk to me ever again. I’ll talk to you. Bonus points if you do it by text or internet because I’m better with that.

You know what I WOULD like? I’d like to be near people, but not necessarily forced to interact. I’d like to sit in a busy cafeteria and just watch and absorb people for a little bit. I’d like to sit in a hallway outside of a university classroom where people are just hanging out and listen to them.

Does that make me weird? Who cares. If it does, I’ll be unabashedly weird. That’s so much easier than fighting myself because I’m not “normal”.

You know what hammering a square peg into a round hole does? It destroys the peg.

overloaded processor

Your world is the same two rooms
and there is little companionship
you know it exists
that easy camraderie between individuals
but that’s not in your skillset

“I downgraded my computer to Windows 7 today.”
you tell your cat
“And now I’m going to upgrade it back to Windows 10.”
Things you do just because you can

but installing drivers and repairing Windows
is a poor fascimile
for installing acquaintances and repairing friendships

Machines have instruction manuals and troubleshooting
And when you fix a computer problem you know it’s fixed
because it tells you so, and things are predictable again.

Outside, nothing is clearly spelled out
and that leaves you rigid with anxiety
unable to go on without straight understandable instructions

What keeps you in these two rooms
forever home unless the groceries run low?
what keeps you from coffee dates, from catching up?

The knowledge that you tick where others tock?
The knowledge that you operate differently and it’s getting harder to hide it?

And it’s not like you don’t want to be with your friends.
It’s just that so much of this life is overloading on your processor
the light here, the tags on your shirt, that motorcycle driving by, a sudden change in schedule
and at the end of the day, you have very few resources left to devote to social occupation

especially when social occupation either is located in these situations that drain your processor
or something that causes you to search your mind for the correct response but it’s in a different language

you do not mind that you operate differently
But that just means you need different things to be happy

like friends who don’t mind if reciprocation is sometimes late, or lacking, or overdone.
like people who are willing to accept that you probably feel more closer to them than they think you do
your behaviour is not always an acceptable measurement
for the interest you have in them, the amount they mean to you
You don’t ask questions because you don’t know how, not because you don’t care.

You want to be closer to people. You get lonely, like everyone else
but shoving yourself into mainstream socializing never works out so well
So you’re the fringes guy, hanging around, absorbing. All you need is one or two people who understand.

I went to an autism conference for people with autism, run by people with autism once.
There was a party.
I sat in the hallway outside the party for an hour with headphones on, smiling at people exiting and entering,
occasionally chatting with others who didn’t quite want to enter the room.

Nobody thought I was weird. I was interacting with the party in a way that I could feel comfortable in. No judgement. There’s more than one way to operate.

I walked around that conference with a colour-coded badge – we all did – so that the rules about whether to initiate conversation we clearer.

They say autism is a disability, and when I compare my social life to what I see and hear about friends, I know I am grossly abnormal.

But I would rather try to figure out how to fill my needs in a way that is matched to my particular neurology
than force myself into the mold and destroy myself in the process.

There is nothing wrong with me
There is nothing wrong with me

except that sometimes what is natural to others is alien to me. It just doesn’t occur. Wires don’t cross.

I have folders and folders of scripts in my brain that I can access like a library. I built them up with 30 years of practice
tossing the ones that failed and building on my successes.

So you probably wouldn’t know by looking at me, or talking to me.

Except I’m looking at your mouth when we talk, not your eyes.
Except if you’re saying something I really need to pay attention to, you won’t see my eyes at all.
Except sometimes I repeat what you say because it takes a second to process speech if too much is going on
So I might repeat what you said for directions verbatim, or the last joke
and maybe then I’ll get it

 

So if you want me at my best? Help me figure out what’s stealing my processing power. (lights, noise, crowds, ambiguous situations, changes in plans, etc.) Help me come up with strategies to minimize what these things can steal from me. I never go anywhere outside without over-the-ear-headphones. Cuts down on noise and also keeps me grounded in an interest, musical theatre.

If we seem to get along and I like you, I do want to be your friend. Autistic people aren’t “closed off into their own world”. They’re overloaded. Computers have RAM to help them deal with multitasking situations. When our RAM is overloaded, the entire system crawls to a halt and we don’t have the resources left for the things like socializing.

So please don’t think I’m insensitive. Please don’t think I’m uninterested. I want to know you, I want to know what you like, what your dreams are. We just might have to find a different way of sharing that information.

I’m a person too. If you can remember that, we’re golden.

On physical contact and affection

Hello internet. It’s been a few years. I just wanted to let you know that I’m still around. I want to start blogging again, and fortuitously enough, I can still get into this blog. Thank you all for continuing to comment and e-mail over the years, and I apologize for disappearing.

I wanted to talk a little bit about social expectations. I have never seemed to hold the same expectations around affection as others. I remember friends telling me “you just need to be hugged more”. I can’t speak for all autistic people, but if you really want to show me you care, a hug is both insufficient and also pretty darned uncomfortable to me. Yes, I dislike hugs. I’d rather be shown you care by your acceptance of my quirks. But back then, when my friends insisted I just needed more hugs, I didn’t even accept myself. One friend told me “you need to get a minimum of 3 hugs per day.” Maybe she was joking, but I took it completely seriously and literally, keeping a tally of hugs I received. For someone without many close friends, I didn’t have many people to ask for my daily allotment of hugs. And I took my inability to rack up the “recommended” amount of hugs personally. It was just another way that the world was saying there was something wrong with me.

Nowadays, I’m beginning to accept that my idea of affection isn’t quite what others experience. Another instance of this is my idea of long term romantic relationships. I have not had very many of these, and I’m starting to realize that I just don’t want them. A lot of people might ask, “well, how do you know you don’t want it if you’ve never had it?” To me, that’s similar to asking a gay person “how do you know you’re gay if you’ve never had a relationship with someone of the opposite sex?” The answer is simple. You just know. How do you know you’re straight?

In a society where marriage and children is the expectation, it can be hard. I’m in my early 30’s now and I’m lucky that I still pass as college age, and I don’t really get asked a lot about my plans for marriage and children. Here are my plans for marriage and children: I don’t want them. That’s right, I don’t want to get married. This may sound cold and callous, but I really appreciate my personal space, my time to myself. I’ve never met a person that makes me want to give that up. I appreciate people, though. I appreciate people who are open minded. I appreciate people who are willing to look past eccentricities. I appreciate people who seem to understand the way I socialize. I appreciate people who are brave.

Very occasionally in my life, when I was younger, I would misinterpret attachment for romantic love. I think this was partially because I knew that society expected me to want to date people, and so I was just trying to figure out why I didn’t want to. Don’t get me wrong, there are people that I love. Needing my time and space doesn’t mean I don’t love you. And just because I don’t always say it, or hug you, doesn’t mean I don’t love you. Look deeper. If you know how to recognize it, you’ll see that I care.

What’s hardest for some people to realize is that I’m perfectly happy on my own. I don’t feel like it’s a loss. I haven’t lost anything. Sometimes I see how other people relate to each other and I can see the differences between their style and my style, but the only sadness that has caused me has come directly from societal expectations. I used to make myself miserable telling myself there was something wrong with me. It didn’t matter that I was truly more comfortable operating in my own way. It was different from what was “normal” and therefore I was wrong.

I can’t find who to attribute this quote to, but I’ve read it many times: “Autism – it’s not a processing error, just a different operating system.”

So that’s what I’ve been trying to do lately – figure out my own operating system. Because it’s not wrong. It’s me. And I’m not alone. Maybe to your eyes, my relationships lack what you consider depth. But I have all sorts of meaningful interactions with lots of people, and some people that I consider really good friends. That’s all I need to be happy, once I stop trying to hold myself to a neurotypical ideal.

Autistic Inertia

Autistic Inertia is basically a state of wanting or needing to do something, but being completely unable to do it, almost like a paralysis.

There is a good article about Autistic Inertia here: http://archive.autistics.org/library/inertia.html and one of the examples it gives is:
-Wants to do math homework
-Is frustrated about not doing math homework
-make elaborate plans to do homework
-STILL does not do math homework.

Now one thing that non-autistics might have trouble understanding is, is that this is not for lack of wanting. It’s because of an error in processing. Or, the choices are too arbitrary. Or planning and going through sequences of steps is difficult.

This is how Autistic Inertia affects me. I sit in my room. I should be doing something, I want to be doing something, but I just can’t get started on anything. I end up sitting there doing nothing, or sitting and stimming. And it physically hurts, sitting there knowing you have a few hours to do what you want but you can’t get off the chair and start doing anything. And I don’t even know what I want to do. I literally feel inert, like I can’t move. My brain feels like it’s being contained or bound, and when I think about doing something it pushes against those bounds. It’s a disconcerting feeling.

I’ve tried tightly scheduling my day with a different task every hour. That worked somewhat, but the schedule got messed up around 2 pm and I had to abandon ship, with much gnashing of teeth.

Another way inertia can hit me is when it’s like my thoughts just dried up and went POOF. I enter some sort of fugue-like state. And I’m doing nothing, or I’m doing some action repeatedly, or I’m trying to follow some sequence of actions but they are not the ones I had intended on. And then I come to, after either seconds or minutes, and say “Oh, I just forgot what I was going to do.” And then I find it extremely hard to get started again, partially because I want to know what I had intended to do but that memory has burned up.

My current method to try and catch my free time paralysis-inertia is to figure out if there is a task my inertia won’t interfere with. Because really, free time gives you a lot of different choices so maybe the one I can do just hasn’t entered my brain because I’m too busy trying to force myself to do something else.

So I’ve made a list, on an 8.5 x 11 sheet of paper. I used the computer to print out, in bold letters, anything I’d like to do during my free time. “Orchestration Assignment” (that’s actually one I HAVE to do), “Math Book”, “Cleaning”, “Minecraft”, and stuff like that.

I think my inertia was a processing problem, I was having trouble connecting from “free time now” to “what should we do?” so I was perpetually stuck at “free time now” which left me frozen, unable to do anything with this free time. My list brought me back and reminded me “this is what free time means” and then I had every activity in front of me to choose from.

So I connected the link. I fixed the misfire. And my brain train is running unhindered again.

Most of the time.

Autism and Co-Morbids

It’s one of those days where I have to remind myself that things can be worse. Yes, I have a mental illness, but I have not yet been homeless, or cast out by family. No one has refused me entry or service because I was bipolar. Social services is another issue. I HAVE been barred from getting help for my bipolar disorder because I had “too much support”, and I HAVE been barred from most help for autism for being “too high functioning.”

It’s a problem a lot of autistic adults face. Once you’re out of the school system, support for your differences is few and far between. And it’s not like we stop being autistic once we graduate high school. I wasn’t even diagnosed until college, but the diagnosis was mainly based on clear signs from childhood. But many autistic children learn ways to mask the most glaring aspects of autism by the time they are an adult, and so, they function for a while and then burnout. I have heard other autistic people talking about autistic burnout, trying to pass as “normal” for too long.

I wonder how many people with autism have a comorbid mental illness and I would like to talk to them. When things get dark and you can’t breathe, how do you reach out to a friend when your definition of friend is shaky and you don’t know how much weight is appropriate to lean on someone and all of the uncertainty makes you not reach out at all? Does anyone else understand how scary it is to be darkly depressed but completely isolated?

I don’t *not* come to you because I won’t. I’m not proud. I want help. The reason I don’t come to you is twofold, both related to autism. First, childhood bullying. Simply put, I’m scared. Second, I don’t know what the rules are for asking for help. I don’t know what is too much. I don’t know how to start the conversation.

I think this would be a really good skill to start teaching autistic children. In a study cited by the National Institutes of Health, 70% of the kids had a comorbid disorder, and 41% had two or more. Most common were social anxiety disorder and ADHD. Things like bipolar disorder and depression usually have a later age of onset, or at least adulthood (though there are childhood cases.) Where are the studies of autistic adults and their comorbids?

My bipolar disorder and my autism interact directly. When I’m depressed, I can’t handle chit chat nearly as well and am either very quiet and not participating, or I’m cutting straight to the point. When I’m manic, my sensory sensitivities are turned up even higher, the closing of a door becomes a gunshot and I can practically hear the NEIGHBOUR’s TV.

But asking for help is hard, for non-autistics, but even more so for autistic people. And I think the general population tends to operate on “Oh, it’s his life. Maybe he’s having trouble, but if he needs me, he’ll ask.”

Not necessarily.

I’ve spent nights choking as I tried to breathe, staring at the phone but unable to call because I DIDN’T KNOW IF I WAS ALLOWED.

Autistic adults with mental health comorbids: I hear you. I know it’s hard. I know it’s scary and isolating. But we will get through.

Autism and special interests

The Hospital Series will be back. But we’re going to take a break from bipolar and go back to autism for a post. And something a little happier, or at least, something that makes me happy.

In the autism community they’re called “special interests”. Most autistic people have *something* they are very interested in. In the DSM (Diagnostic manual), they call it “encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus”

Abnormal in intensity or focus.

Well let’s take one of my own special interests for an example. The biggest one. Musical Theatre. Intensity? Well, let me describe the feelings that come along with special interests. Just listening to a cast recording makes my heart rate speed up, my breathing catch in my throat, and I get a general feeling of wanting to break out of my skin. I get obsessed with this cast recording and want to spend all my time absorbing myself in it. I want to know every word, every syllable, every note. I want to know the history of the production, the cast. The NEED to know everything about it takes me over and I can no more stop my research than I can fly. The interest is ALL I want to do all day and if I actually have a free day to spend on an interest I might even forget to eat. It’s the only thing I want to talk about. I still struggle with realizing that other people just aren’t as interested as I am and may not want to talk in as much detail about it, if they want to talk about it at all. That’s an example of intensity.

Focus? Well, in some cases my focus is very narrow. Like a specific song. The song “Nobody’s Side” from the musical Chess, for example. I know which actress sang the song on each Cast Recording and how long each version is. When I’m distressed, I line them up in my head from shortest to longest.

Currently I’ve discovered the Off Broadway 2012 version of the musical Carrie and it’s started an Asperger’s obsession cycle…. For me the cycle goes,

Around 6 o’clock yesterday evening I discovered the cast recording for the musical. Immediately I found the entire 2012 performance on YouTube and watched the whole thing TWICE. Then I started researching the history, how the 1988 version of this show flopped and lost a lot of money, who the different cast members were…

This researching can go on for hours. It’s still going on the morning after. Because I just NEED to know everything about it and put it in its little box in my brain.

And it’s never consistent how long the obsession cycle lasts. As far as musical theatre in general goes, that’s been there since I was 5 years old and is still going strong. But the individual musicals cycle, and eventually a different musical will ignite the cycle all over again.

Occasionally a non musical theatre subject will become a special interest. Past ones have been tornadoes, or the computer game Minecraft, or Toronto Island. I was obsessed with running for a while, that was a good one. But they never replace the main special interest, musical theatre, the thing I would love to be able to talk to everybody about for hours.

Recently a professional suggested to me that musical theatre was an odd special interest for someone on the autism spectrum. Especially since I also like performing.

In response to that, I will say that I have heard a very wide range of special interests from people on the spectrum, and as for me, I was drawn to acting first because it was a natural extension of loving to listen to the musicals, and second because I wanted social contact (YES people with autism want social contact, they just don’t know how to get it). So if I was acting, I had contact with my cast. And if I wasn’t good at relating to the people, at least our characters interacted. I don’t understand why acting would be weird for someone with Asperger’s… the social relationships between characters onstage are only onstage so they end when you go home and you don’t have to think of what to say because there’s a script. And while you’re studying it you learn what motivates people and why people react the way they do. Sounds perfect to me. And I CAN relate to theatre people. I usually get along with theatre people and they get or tolerate my quirks.

So special interests really are something special. At least for me as an autistic person, they brighten my life. Even if they sometimes have a feverish intensity, I always have something to be occupied with. And absorbing myself in them makes me feel fulfilled, hopeful, and satisfied.

Some teachers and parents think autistic children’s special interests should be extinguished because they’re “not mingling” or they’re spending too much time on it. Well, teachers and parents wouldn’t understand unless they were on the autism spectrum themselves. I do admit, sometimes I spend too much time on my subject of obsession, but if that’s a problem, schedule some special interest time and schedule some homework time. Don’t take it away altogether. That would be like asking a bird not to sing.

And if the “problem” is that the child is spending all his time in solitary pursuit of his interest, try and open it up. If he’s interested in comic books, take him to the comic book store and talk to the people there. Find an interest group for him, if you can.

I don’t know if non-autistics have anything like autistic special interests, but I would say I would miss it a lot if it was gone.

So then, who the hell am I?

I promise I will return to writing the hospital series once I feel up to it. But today’s blog will focus on the head trip that bipolar episodes bring on.

August of this year was great. I knew who I was. I was confident, happy, and I had people around me. So much of my life I’ve been alone.

September of this year put my emotions to the test. I grew even further, but was full of conflicting confidence and disappointment.

Somewhere around the end of September the mania started. The person who I thought I was was still there, but he was magnified 1000%. Who knows who triggered it? Another one of my medications, school, all the mental energy I was putting into auditions that only ever said no? And the “no”s confused me because all the feedback was good, excellent, even. So maybe a big ball of conflicting emotions was one part of it.

Then, somewhere around the middle of October, I crashed into depression. That’s usually what happens to me when I have a manic episode. It’s followed by a depression. Sometimes not so severe but this one was very severe. On the 22nd I was hospitalized. I got out yesterday.

And I find myself wondering who the hell I am?

Was that content, confident, exuberant, even, guy that I was last August really me?

Is it possible for me to have exuberance without having mania?

Will I have to give up natural excitement and exuberance in order to keep from getting sick?

I liked manic Jay before it got too far and I started with the delusions of grandeur. But that’s not who I am… that’s what the disease makes me.

Depressed Jay is not me. I have too much love for things to be reduced to that.

So is post-hospital Jay really me? I don’t feel depressed, but I don’t feel happy. Everything is just kind of ehh. I can find pleasure in things if I try hard enough.

My doctor would say that the levels of medication in my blood are just starting to get to a therapeutic level, and that I should wait, hold on, whatever.

So say the medication starts working. THEN who will I be?