On the Edge

I don’t know why, but I’m back to needing 8-10 hours of sleep a night, like I have through so much, too much of my life. And insufficient sleep doesn’t just make me tired during the day, it’s not a misery I can just push through, it makes me narcoleptic again. I actually nodded off the other day while going through the testing I had wanted to do back in my 20s, which would probably have caught my ASD and my ADHD, and I could have been dealing with it for the past 30 years rather than continuing to believe if I just tried a bit harder I could actually meet the standards others held me up to, rather than seeing how I was different and finding more suitable ways to do the same things. Ways that actually work for someone like me. So the testing is important, in case there’s something else it can find that can give me some answers instead of more questions.

But that’s beside the point. I’m tired. And fortunately I now make a living driving for Uber, so this morning, when I was still exhausted at 5:00 am after getting to bed at a reasonable time, I went back to sleep and vowed to skip my 7-9 AM shift, which would otherwise have netted perhaps $30. Because I can, and because if I don’t, I might have to miss part of my evening shift, or my last orchestra rehearsal before our last concert of the year. I missed the rehearsal last week.

So I woke up late and sat at my little desk in my tiny apartment while the sun came out just outside my window. In Portland, Oregon, that’s a big deal. Especially this year. Especially to anyone who has Seasonal Depression, as I do. And I kept spinning my wheels, surfing the web, reading my Facebook News Feed, knowing I’ve got things I need to do, and I decided a change of scenery would help me get my mind on track, and it would get me out in the sun, which would be good, so I packed up my laptop and went to a nearby café. Where, as I tried to get on their internet, I remembered it doesn’t work for my notebook computer, just for my tablet computer and my cell phone. No problem. I’ll set up my cell-phone’s Wifi hotspot and use my cell data minutes for a little while. But that didn’t work either. OK, worst case scenario, I can research articles on my phone and use that information for the writing I came out here to do so that I can get it in by deadline, if I work really hard at it. And my phone refused to pull up any of the websites I need. So I popped open my cell phone plan management tool to find out why… nothing. I could certainly sleuth this on their full website using my notebook, if I could GET online with my notebook.

At this point, I wanted to throw something. But then the nice staff, who didn’t intend for their network to be insufficient, would have to pick up the broken shards of my lovely teal mug, and the customers would have their pleasant morning exploded into by my frustrated outburst. So I refrained, drained my coffee, packed up my notebook and phone, and went somewhere else. But first I went to the bathroom. Where there was no place to put my notebook while I was on the toilet. OK, I can prop it on the sink, as I sometimes do when there’s no table, shelf, chair or baby-changing station. But the sink didn’t have a flat edge, it had a sloped edge. I couldn’t even get it to rest without sliding when it was right under the faucet, which is a place I NEVER want a computer to be. Dammit, fine I’ll just put it on the floor, ANOTHER place I never want it to be! This is a bigger deal for someone with ADHD, people. We have extremely strict routines we use to make sure that we have a habit of never putting valuable things in places where we might forget them and step on them, spill on them, leave them behind, or any of the other myriad things that we are far too capable of doing. This isn’t just a routine, it’s strict behavioral hygiene that makes it possible to function on a day to day basis. Which is why having to put my notebook computer on the floor was just the last straw on this otherwise fairly tolerable day.

I swear I’ve about had it. I’m living in a 10’ x 10’ room, the entryway of my apartment, with a shared bathroom down the hall for which I have to take a key and a roll of toilet paper every time I need to use it. I can afford half the rental on a house in the area of town I want to live, and I have someone I get along with who will rent the other half, but my income is not conventional and neither is hers. She has someone to co-sign, but a lot of places don’t allow that. There’s this ray of hope that we can pull it off, but only if we find the right opportunity. Until then we’re in this sucky situation that is just one frustration too many and leaves me with very little reserve for all the other things that go wrong, which is why a single, seemingly insignificant setback can knock me right off my stable emotional ground.

This is nothing new to anyone who doesn’t fit what our culture deems “normal”, by which they mean “acceptable”. But look at a bell-shaped curve and remember; there may be a whole lot of people who are clustered in the center of the graph, but those of us who aren’t in that region, who are out on the fringes, we’re part of the graph, and we can make things work by doing it in a slightly different way, like me making the income I need by being a rideshare driver, but we hit wall after wall because society has come to accept alternative solutions less and less over time, the same way big box stores have made little nook-and cranny, unique alternatives a thing of the past. The fact that landlords can insist on a slew of requirements means they don’t HAVE to find a place for someone like me. I understand; if I owned a house, I’d rather rent it to someone who is less likely to damage it while they live there, and for that, I want assurances that people living on the fringe can’t give me because they don’t have the standard documents. Because they’re not standard.

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Figure 1, Bell Curve (Abhijit Bhaduri, 2015) Creative Commons: https://creativecommons.org/licenses/by/2.0/legalcode.

And social services have even more requirements, even more restrictions. If I go into an apartment, I can’t have a vegetable garden in my backyard to work on, and I know myself well enough to know that a community garden offsite is not going to work for me. ADHD; out of sight, out of mind. Gardens don’t handle that very well. And what about the rabbits I want to raise? The chickens? And how am I supposed to support myself if I can’t afford my health insurance because I’m spending my money on groceries because I have no way to raise my own food?

I’m ready to start guerrilla gardening, at least. Just plant some herbs and sweet potatoes out in the meadows on BLM or State Forest land and hope they make it to harvest time. There’s some land like that out in the area of town I want to live in. But first I need to find a place over there to live. There’s nowhere here on my end of town but yards and public parks.

Argh.

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How Autism Made Me More Compassionate. Than others.

Hand HelpYou’re probably familiar with autism, Autism Spectrum Disorders (ASD) , and Aspergers, a form of high-functioning ASD. People on the socially awkward end of this scale have long been accused of selfishness and inability to care about others, which is simply not true. It’s not that we don’t care, it’s that we don’t see the signals that would tell others that there’s something wrong. Even with PDD-NOS, Pervasive Developmental Disorder Not Otherwise Specified, which is closer to the center of the scale, you can’t fully grasp what people mean when they say things, especially if they seem to be joking. You can’t read a facial expression or body language if it’s subtle. Since most people can, and they don’t realize when it’s subtle, this can make you look and feel really stupid even if you have an IQ of 125 or more. But it also means you aren’t subject to peer pressure because you’re oblivious to it. It means you don’t feel compelled to go with the flow because you can’t feel the flow, or you feel it but you don’t see any point in going with it, as it will take you a direction that you aren’t interested in.

This can be a good thing, when the flow is a bad thing.

A person with an ASD will go into a social situation and make the mistake of behaving according to what we understand are the right social rules, only to find out that once again there’s some signal that we missed. We find out, after the fact, that this one was an exception to the rule, and we should have known that, because everyone else does. It’s like that scene in “Clan of the Cave Bear” where Iza is at her wits end with Ayla as Ayla once again breaks a taboo everyone else simply knew without having to be told. And to any Aspies reading this, just so you know, I’ll be using the word “normal” when what I mean is “neurotypical” throughout this post.  

It’s this apartness, these differences between us, that prompted this post. I’m distressed that lately we’ve heard a lot of ranting, us versus them, we’re right, they’re wrong, the world is going to hell and it’s all “their” fault, we have to take drastic measures or we’re all going to die, you are a bunch of devils. How can we make it stop? Well, as long as there’s an “us” and a “them”, that’s hard. As long as “we” are so positive that what “they” are doing is wrong, immoral, dangerous… we can’t. Which means we, ALL of us, have to stop seeing things this way. Period.

This is called compassion. Well, it’s more a desire to understand what the other side is experiencing, and considering the possibility that they have a valid reason for what they’re doing, and if you’ll take a moment to consider the possibility that while you might be right, it’s possible they’re ALSO right, and if you sit down and talk about it respectfully you can find a solution that works for everyone. Which is pretty damned close to the meaning of compassion, but it takes a lot longer to say.

It turns out that having an autism spectrum disorder might actually make it easier to get past this tribalism. I want to tell you a story from my own past that at least proves that a person with an ASD, like myself, is fully capable of going to extraordinary lengths to help another person, even when there’s no possible explanation except compassion.

It was a very warm Texas day when I’d gone to a park where a group of historical enthusiasts were meeting to practice their skills. There were artistic re-enactors sewing garments, weaving belts and talking about authentic period recipes. I’d come to join as a musician and seamstress, while watching fighting re-enactors layer up in padded gear and go out on the field to practice hand to hand combat. I met a really great guy who welcomed me to the group and made me feel at home. Then he went out and happily bashed his friends, who enthusiastically bashed him back, as only good friends can. An hour or two later, after I’d been happily talking with other artists and learned some new tricks for making decorative edging, he packed up his gear, hopped on his bike and left.

It was over 100 degrees out, and no shade on the roads.

The next time I went, I took my instrument out of my cargo van, said hi to him, played in the shade, and when it was time to go he asked if it would be OK if he put his bike in the back of my van and got a ride with me, as he lived about a half mile away, and it was 105, and he’d been bashing his friends in heavy layers of cloth, as is historically accurate. Oh my God of COURSE you can! Here, I’ll open up the back, pop it right in there, and give me directions, I’m TOTALLY taking you home! I can’t believe you rode that thing up the hill to get here then engaged in heavy exercise in all that gear and were THEN going to ride the bike back home in this heat! That’s INSANE! Understandable, of course, because how else are you going to find a group of friends who have so much fun bashing each other while wearing old-fashioned clothing. If you don’t have a car. These are the things we do because we’re not like other people who are perfectly happy just going to the movies on a lovely Saturday afternoon. We’re funny that way.

Well, I got to know him a little better on the trip, and I told him I’d be glad to pick him up and get him to the practice sessions as well as taking him back home afterwards, since I was going anyway and he lived so close. And I did exactly that.

A few weeks later I read, on his Facebook feed, that he was dreading having to go get groceries. Well, yeah; I’ve had to hike groceries from store to house without a car before, it’s hot, it’s a pain in the ass, and you’re limited on how much you can buy, and WHAT you can buy (note to self, do NOT try to stock up on canned food when hiking groceries home in Texas heat.) So I said, “Hey, how about I come over there after work and drive you to the store and back?” He lived 15 miles west of where I worked, and 20 miles west of where I lived, so it wasn’t on the way home, but he’s a good guy and I care about him. As I do about everyone. I’m funny that way.

It was a late night where I worked, we messaged back and forth, and in the end I arrived at 10:00 PM. He and another guy got in my van. He asked if it’s OK if we take his roommate with us. His roommate works at the store. Of course I’ll drop him off for his graveyard shift. Hop in!

On the way there, it occurred to me that this guy also had to get back home after his shift ended 8 hours later or so. And it was five miles from their home. And this is Texas; public transportation isn’t that good right in the city, and this was not right in the city, and worse yet, it wasn’t standard hours. Shall I pick you back up in the morning and get you back home before I go to work? I can do that and still make it on time. Yes, thank you, he said, that would really be great! So I did. Every night and every morning, until it occurred to me, here I am driving 20 miles to pick him up, take him a few miles down the road, then 15 miles back to my work, every morning, when in fact, since I’d done the reverse of that very same things the night before, and since he’s not in his bed every night…

And that’s how I ended up going over the their place every evening after work, handing him the keys to my van, then surfing the web on my laptop and watching TV before I slept in his bed. When the alarm clock rang in the morning I got up, took a shower, grabbed my keys off the counter and went to work. Every day. For quite some time, until they replaced the car they’d lost. We had a lovely Christmas dinner. He’s a cook, and he makes a damned fine brisket, which they were able to buy for half off because he snagged it as soon as it went on sale, and they were able to get it back home because they didn’t have to bike it for 45 minutes in the Texas heat, or hike and bus for  a godawful length of time after the buses start running in the morning.

Of course I realized that if I told people that I’d slept at a guy’s place after only meeting him a few times so his roommate could take my van and drive himself to work every night they’d probably think I was crazy. Well, no, but I’m certainly not normal. Neither am I self-centered and uncaring. The problem is not that we don’t, or can’t care, it’s that something has to be really obvious for us to be aware of it, and when it IS obvious to us, THAT’S when what we do or don’t do has meaning.

But it makes me wonder, did I do this in spite of my ASD or because of my ASD? After all, if you’re the normal type, I bet there was a point during this story when you saw a deviation from social norm, where it’s understood that you don’t just turn your life upside down for someone that you don’t know REALLY well, and you don’t hand the keys to your car to someone unless you know for SURE that they aren’t a thief or a daredevil, so it’s important to know someone better. Yeah, I get that, and I took it into consideration, but the fact that I don’t feel the same compulsion to adhere to social norms is part of why I was able to weigh the risks against the values, and how this act fit my values, and judge the equation solely on that basis. Common sense, at least as a compulsion, is anything but common for those with an ASD. But that’s the very reason it’s easier for us to accept people and situations that don’t fit the predefined societal markers that tell us this person is in our social group and it’s okay to associate with them, and to help them. That’s just not an instinct we have. So we can either be kind to everyone or be kind to no one, because there’s no instinctive hierarchy that we respond to. If we DO respond to a social hierarchy it’s because we learned it as a rule and have logically determined that it’s the correct, rational response. But not because it’s built into the way we think or feel.

For me, I’m not even Christian, exactly, or at least that’s what Christians tell me, but I refer to his teachings for guidance in my principles and practices. I believe that unconditional love is what we all want, and what we should all strive to give, so any social hierarchies I was taught I’ve rejected, because he would reject them, and I want to love like he loved. I don’t actually need you to believe this about me, because that’s not the important thing. I’ve gone years without telling anyone this story; I didn’t do it so I could tell people about it. I did it because I saw someone whose life was harder than it should have been, and I did it because it was what I could do. I didn’t have money I could give them, and I doubt they would have taken it. What I had was a van, and enough money to put enough gas in it, and the right work schedule to make this work. And the other thing I had was no social compunction about it either way. So maybe it doesn’t make me more compassionate than the next person, really, but in this instance, I think it made me more able to DO something about it, and if you’re going to measure compassion by what others DO, then rate my compassion based on this.

It turns out that I need to remind myself, when people tell me I’m some kind of unfeeling, uncaring creature, that they’re wrong about that, and this is one time when that was  really obvious. And I realized, if I need to hear it, so do you, because this ability to care in spite of, or maybe even because of, having an ASD is not unique to me; of course we can care, it just looks different with us. For the times it makes us seem less compassionate, there are also times when we might seem to go overboard. As I see it, we’re all human, we’re all in this together, and we have a choice; we can help each other or not. I’d rather be the type of person who helps people.  Maybe that makes me different. I’m okay with that.

Original image for “Hand Help” by Jaroslav Šmahel is licensed under Creative Commons C0.

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It’s not a character flaw, it’s a disorder

blindmanHave you ever felt like all your problems would go away if people just understood you better? I’ve been thinking about this a lot lately, and coming to terms with the fact that you can’t control what other people understand. This has been my greatest challenge this past year or two, since it slowly dawned on me that my issues weren’t limited to chronic Major Depressive Disorder (MDD), which I’ve known I suffer from since I was eleven years old, and Autism Spectrum Disorder (ASD), which I’ve known about for ten years, but also include Attention Deficit Hyperactivity Disorder (ADHD). It actually affects me in ways I didn’t even know were particular to it. There are six scales for the effects of ADHD, and most people are familiar with only two; hyperactivity and focus. There’s a good set of slides that explains this at https://www.researchgate.net/publication/237668859_The_Brown_ADD_Scales.

I don’t have hyperactivity, and my focus is a concern but not extreme. My worst issues are on the scales people don’t even know about, including memory (utilizing working memory and accessing recall) and “activation” (organizing, prioritizing, and activating to work). I can be paralyzed when it comes to picking up and organizing my home, and it’s not because I’m lazy; it’s because that part of my brain doesn’t function correctly, just like a blind man simply can’t see, and no amount of trying harder will change that fact. This organizing problem causes huge issues with what I can own, how I move around my space, and whether I can have people over. It can also be hazardous. I work hard to keep the mess down to a relative minimum, and move things fairly regularly so I can sweep and clean, but I have a hard time reaching my ultimate goal of just having a nice place to live. On good days, it’s like a bachelor pad; on bad days, which are far too often, it seems like a rat’s nest. I keep working on it, though, and keep making new promises to myself that this time I’m going to get it right, and everything is going to be okay.

Lately the worst part, though, is that I’m spending so much time explaining to other people that this is NOT a character flaw, my brain simply can’t DO these things, and that it’s actually REAL, I’m not just too hard on myself, nor can I just stop being this way. It’s not a temporary condition, it’s not something I can overcome, it’s who I am. And that keeps me mired in the problem, rather than working toward solutions. And it’s exhausting and depressing. Lately I’ve been lying in bed in the morning, wondering if I’m going to find the will to simply get up. Sometimes I wonder if the depression is a standalone issue or just a result of dealing with ASD and ADHD. Then Autumn arrives, and I remember, yes, it’s definitely a standalone issue, and it’s way worse in the winter.

I have to remind myself of the loving and selfless things I’ve done, to overcome a very depressing sense that maybe I AM just selfish. No, I can name things I’ve done that prove otherwise, over and over, and some are so extreme in the selflessness that other people seem to be amazed that ANYONE would do it. After Katrina survivors were bused to Dallas and housed in a facility miles from the nearest affordable department store, I drove my minivan down there every day and spent four hours a day taking vanloads of people from the facility, to the center where they could get their benefits, to the Walmart where they bought new clothes, toothbrushes, shampoo and everything else they needed, then made sure I got every one of them back to their shelter before going home. I did that for several weeks, and I didn’t think it was anything exceptional, but other people did. I have plenty of stories like this. I’ve been a volunteer during most of the times in my life when I didn’t have a paid job. When friends and family have been in difficult situations, I’ve invited them into my house or gone to help them where they are. It’s most certainly not selfishness, but when I’m told, time after time after time, that I’m being selfish, it’s hard not to slip up and think yeah, maybe I am just selfish, then I remember. I have to work hard to remember; it’s not a character flaw, it’s a disorder, and I’m doing the best I can. I would certainly do better if I COULD do better. The same is true when I’m criticized for how messy my home is. It’s not a character flaw, it’s a disorder. I’m doing the best I can. I would do better if I COULD do better. I know because I find myself in tears, trying to sort my belongings, trying to put them away, far too often. I spend days in my apartment trying to get things put away instead of going to see my friend’s band play at the local pub; no cover charge. Trust me, if I felt I could go, I’d go, but I can’t because my apartment isn’t clean yet. And at the end of the day, my apartment still isn’t clean, and I didn’t see my friend’s band, either. And by the way, I have a number of friends who are spectacular musicians; one of my beloved friends played Carnegie Hall, another sold a song to Disney for the movie “Pete’s Dragon”, and that’s just two examples. I intend to work that Disney song up for harp and voice so I can play it on the streetcorner where I live, because it’s awesome, but first I need to clean my apartment. Incidentally, my harp isn’t even in my apartment right now; it’s at a friend’s place, partly because my friend loves it, but also because there’s no room for it here. Which means I can’t play it. I miss it. It’s not about wanting it bad enough, and it’s not a character flaw, it’s a disorder.

So could we just get past this conversation about why I don’t have a clean apartment? Can we get past this belief that I’m self-centered and don’t care about other people? Can we just put all of that to rest so I can get on with what I need to get done? This apartment still won’t clean itself, and it’s clearly going to take me longer than it would take you. So I need to be at least trying to get it done, and the time I spend trying to explain myself, trying to help others understand what I’m going through, trying to figure out what I need to overcome and what I will NEVER overcome and need to accept and find another way to get it done, I need to get past that so I can just try to live my life, as best I can. Being mired in the past, being mired in what’s wrong, is not helping. There are things I CAN do well, this isn’t one of them, but it won’t go away just because I can’t do it. I have to figure out HOW to do it, and so far I’m not getting any help with that, I’m just getting a lot of people telling me to just get it done. Seriously, that’s what I’m trying to do. Either help me, or at least don’t hold me back, and please stop arguing with me about whether I’m trying hard enough. This is not a character flaw, and I intend to keep doing the best I can. I have hope that someday that will be good enough. The only way to get there is keep putting one foot in front of the other. If that isn’t evidence enough of my character, then nothing I can say will help you understand me better. At least I know who I am, whether anyone else does or not. It’s not a character flaw, it’s a disorder.

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The pros and cons of hacking my brain

diy-tdcs(Image from http://www.diytdcs.com/tag/open-tdcs/)

I walk to my desk, take my coat off and sit down, then log in to the phone queue. The phone rings almost before I’ve logged in to my computer. “Hello, this is Laura.”

The caller’s line is breaking up, it’s very hard to understand her.

Her: “I have.. appointment tom… reschedule …” I barely make out a few words.

“You have an appointment in the suite? I can transfer you to the suite. Or is this at home?”

Her: “No….. appoint…. for insurance….”

She names the street my office is on. This completely flummoxes me. I had no idea that any of our departments at this location sign people up for insurance. It certainly isn’t MY department. Could she mean the therapy suite? No, she said that isn’t it. “Can I get your name?” She has to repeat several times, it’s breaking up so bad, she ends up spelling a name, and I start typing it in to the last name field, then ask for her first name. She says that WAS her first name. I get her last name, and I find that she’s not in our system. That means she’s not one of our patients, so it’s not us. “Do you know which department you need?”

Her: “I need the department where I sign up for insurance.”

I have no idea what to do with this caller, and this is CRAZY hard to figure out; my brain has done its thing where, when I’m trying to process verbal communication, it slows down to the speed of a serial dial-up modem. After several more back and forths, where it becomes clear it wasn’t in my department, she asks for a different information desk. Well, this isn’t an information desk anyway. I don’t know where these callers get our phone number, nor why they think this is a receptionist that they reached. This is my desk in a very specific department. I suspect that they google the address and call the first number that comes up without looking at what the website says, or else they’re transferred here by other people in error, but it’s really hard for me to assess these details in real time while communicating well over the phone, and that stresses me out, which makes it harder. I finally decide I can best help her by transferring her to the receptionist, who has a better chance of figuring out which department she needs. Of course, since I’m not a receptionist, my list of numbers I might need is extensive, and not well organized for quick lookups. I tell her I’ll transfer her to the receptionist who should be able to help her, but I’ve never transferred anyone to a receptionist so it will take a moment to find the number. I know it’s on the list here somewhere. I finally find the number and transfer her. And my phone rings again immediately.

Her: “I need to talk to someone about records.” It sounds like a patient.

Me: “Which department?”

Her: “The records department.”

Me: “Do you have a name of a person you want to talk to?”

Her: “No. You have a records department, don’t you? I need to talk to them.”

Me: “We have many departments, and each one keeps records. Can I get your name, please?”

I put her name into our system, she’s not there, it’s definitely not OUR department. At some point she mentions she came in to the emergency department last week. OK, so she needs our main hospital, I don’t think transferring her to the emergency department would be a good idea. I know I have the number for outpatient therapy at the main hospital, because for people who don’t have home therapy benefits, we recommend outpatient therapy because it’s covered by insurance as a hospital benefit that way, and health insurance is designed to cover hospital benefits, when needed. But do I have the main hospital number? I should. Where is it?

Two of my coworkers are hanging over me. One texts me to put the caller on hold. I was just about to do that, and I do so.

Her: “If she needs the suite you can transfer her.”

Me: “No, it’s not the suite. She wants records, she was in the emergency room last week.”

Her: “Main hospital.” The other coworker says.

Me: “What’s the number?”

They talk over each other, it’s hard to understand, I have to have them repeat it, and they still aren’t clear enough, I almost transfer the caller to the wrong number, but it turns out the caller has dropped off the line. The first coworker points to a paper on her cubicle wall, “All the facilities are on this list.” I remember she told me that last week.

Frustrated, I say, “Yeah, that’s in the binder somewhere. I swear I printed it out last week.” I don’t see it anywhere on my cubicle walls or on my desk. “I need to pull it out, make a copy, and hang it on my wall.”

She says, “Or just pull it out and put it on your wall.”

I think about that for a moment and reject the idea. The purpose of having this four-inch thick binder packed with reference materials is so we can find things in it, and if we go pulling things out of it and putting them in other places, then they aren’t in the binder to be found at a later date. To exacerbate this, I won’t be here much longer, someone else will be inheriting this binder, and I’d hate to leave them with a binder that has had things pulled out of it. It’s hard enough to leaf through the thing trying to find the one piece of paper in there with the information I need, it would be intensely frustrating to leaf through, not find it, and later realize someone pulled it out.

Me: “I’ll pull it out and copy it.”

My coworkers are still staring at me. Yeah, I know, this was ridiculous, I did a poor job of communicating with the customer, and a poor job of figuring out what the issue was, where to transfer the call, and find the number for the place to transfer the call to. And this is one of the reasons why I can’t accept the job offer, and will be leaving when my temporary contract is up. Because, when I’m talking to someone on the phone, as well as processing other verbal communications, it’s as if my brain’s transmission won’t engage. As an intelligent person, I find it really frustrating how STUPID I seem at times like this. I pull the sheet out of the binder, make a copy, and hang it on my wall.

And this is why I’m REALLY tempted to get a tDCS (transdermal Direct Current Stimulation) device and hack my brain with it. It’s not just the Depression, which I clearly have a problem with. I almost didn’t go to work at all Tuesday. It was so hard to make myself get out of bed, after several days of feeling like a complete failure, with no desire to do anything. Miserable, dejected, very little desire to even be alive. Hard to come up with a reason to do anything. The number one treatment for depression is medication. There are a large number of different medications for depression, some designed to be used in combination with others. Each one has a fifty percent chance of making any difference at all, and success is considered to be any noticeable positive change; it doesn’t mean the depression is GONE, just at least a LITTLE less intense. But tDCS  has been proven 80% successful. And tDCS has been proven to be able to ELIMINATE depression, not just TREAT it, something NONE of the medications can do. The effects of the medication only last as long as the patient is taking the medication, but tDCS can actually cause depression to go into remission completely. I look into it once in a while, especially now that I have an insurance that covers this kind of therapy. Just recently I learned that tDCS hasn’t just proven effective for depression, but can also be used to treat ADHD, and even Autism, and Autism has few, if any, actual treatments that are effective in any way. The best you can hope for, aside from one of these therapies, is behavioral training, and I’ve been doing that all my life. I’ve never been able to tell when someone is blushing, though, because I can’t SEE it. Faces are beige. All faces are beige, always. I can’t see the subtle hints that suggest what a person is feeling.

There are people with Autism Spectrum Disorder that have used this type of therapy, and after doing so looked at someone and could suddenly, for the first time in their life, read the expression on their face. I first heard about it when John Elder Robison was talking to Terry Gross on Fresh Air, an NPR show I love to listen to: http://www.npr.org/sections/health-shots/2016/04/21/475112703/electric-currents-and-an-emotional-awakening-for-one-man-with-autism.

As for focus, the military uses tDCS devices when training snipers to focus on the target. They use the same type of device and settings that are now being sold to video gamers to “hack their brains”

Please note that when I say “this type of therapy”, there are several different methods for applying electromagnetic stimulation to the scalp to increase electrical activity in specific areas of the brain; they include tDCS, TMS (Transcranial Magnetic Stimulation) and CES (Cranial Electrotherapy Stimulation.) Some manufacturers claim their technology works by quoting studies done with a different technology, so it’s easy to be misled. It takes a scientist, not even a doctor but a scientist, to read the original studies and tease out what’s actually true about a device, and what’s just a bunch of marketing hash.

The thing is, these devices actually interfere with the electrical transmissions in the brain, and treatment uses very specific mapping of the different areas of the brain to stimulate the correct area. If the contacts are placed incorrectly, you can have a very DIFFERENT effect than you intended. This type of therapy should be applied by a professional. If you don’t believe me on this, you should see the images of proper placement for specific treatments put out by DARPA (Defense Advanced Research Projects Agency.) Here’s an example, from the website http://totaltdcs.com/; the information is basically identical to that from DARPA, who did the studies, but it’s just a bit easier to read, I think:

tdcs-depression-and-anxiety-montagetdcs-whole-head-map-of-contacts

I was reading an article by Lecia Bushak  on www.medicaldaily.com that made the dangers of DIY brain hacking more clear:  Dr. Roi Cohen Kadosh, a neuropsychologist, told the New York Times “What we’ve found is brain power is like a blanket. You pull it over to one side and something else is not covered.” You can read the whole article, which also talks about other hazards such as serious burns, here: http://www.medicaldaily.com/put-headset-sharpen-your-focus-transcranial-direct-current-stimulation-may-boost-cognitive-function.

So clearly the do-it-yourself model is not recommended. Unfortunately, the nearest place that has treatment is two hours away; I’d have to take a day off work to get a treatment, and it takes a series of treatments.

There are portable, at-home tDCS devices. There’s one used by people who do a lot of video gaming, which helps them be better gamers. It has a headset of sorts that puts the anodes and cathodes in EXACTLY the right place, but that’s only one placement, and it’s not the placement I want. That placement is for the zen, in-the-moment focus that makes time expand, so that what needs to be done quickly seems to go slower, while at the same time the person doing it doesn’t notice time passing hardly at all. It’s amazing, but that same setting also makes it very hard to remember anything that happens when having this experience. And memory is one of my greatest challenges with ADHD; I need BETTER memory, not worse.

And this is what was on my mind when I listened to a TED talk by Andrew Pelling, a scientist that says he makes technology out of stuff dug from trash cans. He made a human ear out of an apple. He says people should be able to do this in their own kitchen, and he has a laboratory where he wants to teach people how to do it. https://www.ted.com/talks/andrew_pelling_this_scientist_makes_ears_out_of_apples?language=en

I’ve determined that the medical community, the health community, is going to take FOREVER to get the use of these devices studied and approved for treatment of depression, ADHD and Autism, among other things. There are a very few health plans that WILL cover such therapy for depression, and few clinics where they do it, and the vast majority of people aren’t even aware it’s an option. I’m talking about both patients and their doctors. So there’s a good chance it won’t happen in my lifetime. But what if I call Andrew Pelling and ask him if it’s possible to take used TENS units (Transcutaneous Electrical Nerve Stimulation) which are AC (Alternating Current), which won’t work, and with a small kit and some very clear instructions, have people convert them to a tDCS, which is DC (Direct Current) and make sure it’s the right power level and all that, then create a swim cap style of brain mapper which could be placed on the head using specific reference points, such as the ears, the nose, the jaw, the base of the occipital (that bump on the lower back of your skull where neck muscles end) to locate the correct placements regardless of the size and shape of the head? I wonder if it can be done. It seems like we might have to take therapy into our own hands if we’re going to get the treatment we need. That’s a scary thought.

Posted in ADHD, Autism Spectrum Disorder, career, CES, Depression, memoir, mental health, tDCS, TMS, Uncategorized | Leave a comment

What Aspies do well

I want to be clear about something, since I do a lot of blogging about the challenges of living with Asperger’s and with ADHD, not to mention the occasional bouts of Depression. Being different should not be viewed STRICTLY as a disability. I prefer to call these “diffabilities”, meaning different, and there are benefits to being different, whether the society we live in recognizes it or not. I’m grateful to live in a country where there are people who recognize this fact. And while it’s true, as others have said, that “If you meet one person with Autism, you’ve met one person with Autism,” meaning that the way it affects each person is different from the next, there are commonalities as well. There is an array of symptoms that collectively define the diagnosis, but each person with that diagnosis will have a different collection of those symptoms, more like a fingerprint. You can recognize that you’re looking at a fingerprint when you see one, but each fingerprint is unique.

These differences are certainly challenging at times, but they give us a chance to look at things in a different way, and it is the people who have looked at the world in a different way who have made the great advances in science and industry. This is a HUGE benefit to the world, if you find where you can fit, and where you can help.

For my own part, when I was studying psychology at University of Washington, I found it easy to strip away the trappings of society from people’s behavior, and recognize which behaviors had a practical purpose as opposed to those behaviors that people simply repeated, which had no purpose, and in fact sometimes caused problems. My favorite example is door opening. It’s considered polite to hold the door, right? So people do it. But if you just do it because it’s polite, without knowing WHY it’s polite, you can end up doing it when there’s no need to, and, in fact, place a burden on the person you’re holding the door for. Have you ever had someone hold a door for you when you were a slight distance away, and you tried to hurry so that they didn’t have to just stand there holding the door for you? As someone who often has knee pain, having to hustle to get to that door is LITERALLY painful, and aggravating.

So I thought about it, and wondered where this idea of holding the door for other people came from. My first thought was that it was, in the past, about men holding the door for women, so I thought about why a woman might have difficulty opening a door, whereas a man wouldn’t. There’s always the obvious mechanistic element; men are stronger. Were doors once so hard to open that a women, being generally weaker, might find the door difficult to push? Maybe, though it seems unlikely. So then I thought about clothing, another common difference, especially historically. Well, sure, wearing huge hoopskirts, as a woman (with shorter arms) could mean that the door could be farther away than the length of arm, in comparison to the width of the hoopskirts, and by getting that close to the door, your skirts might tip up in the back, scandalously showing an ankle. This is a distinct possibility. Go a little deeper, though, and think about a column of people walking through a forest; as the person in front walks past a branch, either that person HOLDS the branch, handing the branch to the next person, or the branch whips back into the next person, which can be painful. This seems to be a more likely source of the door-holding habit. You HOLD the door so it doesn’t whip back into the person behind you.

Of course, if you look at this as the purpose of holding that door, you will realize that it isn’t necessary unless the person behind you is close enough for the door to thwack them, and if the person behind you ISN’T that close you’re just repeating a behavior for the purpose of repeating a behavior. This places an obligation on the person behind you to hurry up so you don’t have to keep standing there.

I suspect most people would never have thought about that. It’s an expected behavior, so we do it. And to be honest, my assessment of this is somewhat pointless. The fact is that it’s considered polite, so I need to conform or be considered impolite. Where it becomes important is when we consider the difference between the things we should do for each other because it’s right, and the things we do for each other because it’s what we’ve always done. This is really important in assessing the difference between cultures. There are cultural differences that are acceptable, and there are cultural differences that are unacceptable, and it’s very important to know which is which. For example, slavery, and the subjugation of women. Recognizing that these aren’t just cultural differences but ethical and even practical problems (studies have shown that cultures with less subjugation of women are healthier and wealthier cultures) helps us know when to push for change, and when to let it go.

So about that door, let it go. And by that, I mean, it’s not something that needs to be changed. It is being done in the absence of practicality, sure, but it’s not hurting anyone. That said, don’t ever give a person grief for NOT holding the door, unless it was going to slam in someone’s face. If the face is not there yet, the door doesn’t need to be held.

I doubt I’d ever have thought this through if I didn’t have Asperger’s. This is what we do. Because the social skills don’t come naturally to us, we view them as observers, from the outside looking in. If we didn’t exist, there would be no one who could do that. This is what we’re good at. Now don’t get cocky about it; you’re awesome, I know. Just accept it, and don’t expect anyone else to recognize it. If they do, great, but you can just quietly know, this is something you do well, and it’s a valuable skill. I DO wish I’d gone on to get a Masters, then a Doctorate in Psychology, because there are so many studies I’d like to do on cultural behaviors and societal norms, proving and disproving the benefits of certain actions. And I’m uniquely gifted in recognizing behaviors that don’t have actual purposes, because NONE of these behaviors come naturally to me. And then there are some behaviors that DO have purpose that also don’t come naturally to me, which is why I ask these questions. I need to figure out how to pretend to be normal well enough to fit in, but not so well that I engage in mass culture when the masses are wrong. Being able to stand back and look at these behaviors without bias is handy. The fact that none of this comes naturally to me helps me be unbiased. I dream of a day when, instead of just labelling people as having a disorder, we’re able to recognize the unique gifts of every “disorder”, and find out where these differences are actually beneficial, then, as a society, start calling them “diffabilities”, instead of disabilities.

I’ll keep being a voice in the wilderness until then. But I promise to hold that branch for you, if you’re behind me, so it doesn’t thwack you in the face.

Posted in Autism Spectrum Disorder, memoir, mental health, relationships, Uncategorized | Leave a comment

These are not my People

I forget, sometimes, that just because people are being nice to me does not mean they understand me and that I can be myself around them. Especially at work. And I forget, sometimes, that the people I have to be around, because I work with them, are not people I choose to be around because we have things in common, and vice versa. So I forget, sometimes, that there will be people I have to be around that will never understand me, and will judge me anyway, based on how I meet up to their arbitrary standards, such as how well I follow a conversation about pop culture. And just to be clear, I don’t like pop culture and I pay very little attention to it, so anyone who talks about it will lose me pretty quickly.

Can I just say, to those who struggle with Aspergers, that it’s OK, to have people at work not like you? And because we work together, in a good office, they will still be respectful, and they will still be nice, but they will still not like you. Let it go, and remember that interactions with these people are best kept shallow and formulaic. If you start being yourself, there’s a reasonable chance you’re going to do something they’ve decided is stupid, and they’re going to decide YOU’RE stupid, and that’s going to make working with them harder, even well after then event.

I was having a rough day recently, and a coworker sent me a cryptic message that a note I’d sent her through one of the programs we use didn’t reach her because the task had been marked completed. I assumed I’d accidentally marked the task completed and I couldn’t figure out how I’d done that; I never do that. I don’t even use tasks because, while I’d been taught how to create tasks and assign them to other people so that they know what’s going on, I hadn’t been told anything about what happens once a task is created. Apparently, the person they’re assigned to has a way of getting the notification, viewing the task, then acting on it, and, apparently closing it.

But I have Aspergers, which means a large portion of my brain has to consciously process what people mean when they talk to me, and while that happens, there’s not a lot of brain cells left over for figuring out anything that isn’t obvious. If I can be given the time to parse the message, then given the time to work through the issue, I can certainly figure it out, but not as fast as someone who doesn’t struggle just to receive the message accurately. Easier yet, just don’t be cryptic; tell me point-blank, especially the first time I’m told how something works. This is part of the reason Aspies work best with blunt, direct, honest communications. Of course, most people HATE that, and assess other people’s intelligence as lower if that’s how they communicate.

Which is probably why I found her standing next to me and talking slowly to me, as if I’m an idiot, to tell me what happened, how it happened, and what I need to do in the future. Just don’t put a remark on a task that’s already been closed by someone else. Oh, well, DUH, now that I think about it.

Bu that just adds to her view of me as an idiot, which means I’ll probably get more ridicule when I say something uninformed in a  meeting, which I need to stop doing in order to avoid having further episodes of the slow-talk.

These are not my people. I’m in a foreign land. I need to behave accordingly. When I traveled through Europe as a tourist, I kept my wallet and passport zipped into a pouch on a belt under my clothes so that I didn’t become a victim of theft. I need to be careful around the people at work for the same reason. These are not my people, I’m not at home, they don’t understand me, and some people will look for the weakest creature in the area when they want to attack. I am that creature, and I need to avoid setting myself up to become that victim. Back to minimal conversation, just keep my head down and do my work; it’s better to be seen as antisocial than to have my weakness exposed. This is a practical tactic, and it isn’t giving up; it’s handling my disorder. And I don’t have to find a way to make her like me. She doesn’t have to like me. Which is good, because the things it would take for her to like me are things I will never do, either because I don’t want to (like following pop culture just so we have something to talk about) or something I can’t do (like always exhibiting exactly the right etiquette, with perfection.) That’s OK. When I’m with my people, I’m understood, and I’m liked, and I can be myself. Just not here, because these are not my people.

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The Aspie Downward Spiral

The monthly team meeting is under way when my supervisor asks me where to find the spreadsheet I created. It generates a note with all the needed details about a patient’s insurance. We watch the projector screen as he goes through the directories and pulls it up on screen. “Hey, guys, I want you to see this; Laura has created this awesome tool. Laura, can you explain how to use this?” I’m floored, because it’s not really ready. I showed it to him a month or more ago because I thought it could be useful in the future, but when he first had me creating these insurance notes, based on the insurance plan, with the deductibles, the co pays and the Out-of-Pocket maximums all written up, I still wasn’t quite clear on what it was for and what information needed to be in the note. I’d seen a few examples for people with Medicare insurance plans, and for people with commercial insurance plans, and I could see there were differences, but didn’t know enough yet how to interpret those differences, and how to get all of the relevant details into each note. I needed more experience, more guidance, and now I was on the spot.

So I used the shadow of my finger on the screen to point to column A. “This is where the note you need will be generated, based on the numbers in the rest of the columns. There’s a different page for each insurance group.” Then I noticed that the message for the one I was looking at appeared to be truncated. “Check to make sure the note has all the information. It should show the deductible and the out-of-pocket values.” Then I notice that the note did indeed have that, it was just that there was a paragraph break in the formula, so it only looked like it wasn’t all there. “Oh, this is one of the plans where I’ve got the Medicare part D broken out from the rest of the Medicare benefit. It’s all there.” I went on explaining it to the best of my ability, but I was a little flummoxed that he wanted to use this before it was really ready to be used by everyone. I knew how it worked, and I knew where I was at, but there were sections that were still being worked on. But he wanted me to explain it, so I did so.

I can’t recall the specific details, but a little later in the meeting, he asked if anyone had any ideas on how to handle a challenge we faced. No one answered, and he asked again. I’m pretty new, but when I hear someone struggling to find an answer, I try to help, and since I had an idea, I asked, “Can we…” and gave my idea. K laughed out loud. At the end of the meeting, she said loudly, “Laura asked if…” and laughed out loud again. Okay, so apparently I’d asked a stupid question; either we were already doing that, and we still had the problem, or it was something that wouldn’t help. But I suspect it went beyond just laughing at how stupid I was being. She was firendly enough in the beginning, but since then she’s been pretty cold to me, only providing the minimum information I need when I ask a question, and she hasn’t said anything to me in several months except for things that could be interpreted as hostile, such as the day last week that I was walking down the hall to the bathroom at 8:26 for my 8:30 shift as she was walking out, and she said, “Are you just getting here?” It could have been a friendly question, like “How about this weather?” Or it could have been her way of pointing out that I should have gotten here earlier. I don’t know which. What I know is that she doesn’t seem to like me; she seems to have decided I’m not a decent human being, and I can now pretty much expect personal attacks from her from this point forward. I just don’t know when to expect them, or how, or why.

Maybe she thinks I’m arrogant, because I had one of my geeky tools praised by our supervisor, in spite of the fact that it really doesn’t work well right now, and because I made a suggestion as if I thought I knew what I was talking about, when in fact I was just trying to come up with something. Maybe she’s noticed I don’t always say, “Good morning” and Good night”, and I pretty much keep to myself. In my experience, since I’m not good at gauging when to interrupt someone to say “good morning” and “good night”, I’m actually better off just not doing it, though if I could do it correctly that would be better. I just know I can’t do it correctly, and doing it wrong seems to be worse than not doing it at all.

So this is stressful for me, as are dozens of other similar things throughout the day, where I wonder if I did something wrong, came across as something I’m not, whether I should interrupt or wait until the conversation is over, and so many other things that I just don’t read correctly because my brain just doesn’t work that way.

The thing is, the more stress I’m under, the worse I am at giving the right response, and the more awkward my interactions are, which causes more stress, which makes me worse at this. And so it goes, in a downward spiral of devolving interactions, until I’m doing truly stupid things because I know I have to respond in a reasonable amount of time, and I do my best to give the right reaction, and later, after I’ve actually had time to consider ALL the details, I realize that was the wrong reaction. I did it wrong. I’m a failure again. And that’s stressful. And so it goes.

I think this might be the hardest thing for neurotypical people to understand about people with Asperger’s because we ARE high functioning, and we DO get it right so much of the time that it’s assumed we’re capable of getting it right ALL the time, so stop using the diagnosis as an excuse. But the truth is, it wouldn’t have been diagnosed if we really were capable of getting it right all the time. If we could do this, we would. It’s not just the actual calculation during the conversation, which we’re having to do using a part of our brain that is the equivalent of a serial bus on modem dial-up, while everyone around us is on parallel bus WiFi, so the images we’re getting are like bad streaming content and we’re trying to see it all but it’s not coming through, while everyone around us has excellent high-definition streaming on a huge flat screen and they’re angry with us because we made a bad call. If a referee at a game had to make calls based on the kind of data we have available to us in the immediate moment, he’d be making bad calls all the time.

Sure, when I look at the instant replay a few times I can see what I missed the first time around, but real interactions don’t get instant replays, because I can’t take the time to review the footage while someone is still talking to me and wanting the NEXT answer. I have to live in real time, and I’ve got a serious case of bad streaming, like that cell phone commercial.

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