Friday, April 30, 2010

Decisions: A Complex Matter

I am scared, and I am trying not to be. It's so easy to think of ways to battle fear and anxiety when you're not experiencing them, and so hard to actually put them into practice in the moment. Isn't that the way it always goes?

I'm debating between writing about this and not writing about this, and can't decide. There is a thin line between not wanting to think about something, and needing to think about it (and write or talk about it) enough so you can vent the excess nervous energy and obsessive mind power it has over you and get to sleep at night, or move on with your day.

It all comes down to decisions, I guess. Decisions! What a topic! We make so many different decisions, every single day, about so many different things. Some of us spend more time and energy on these decisions than others. Some agonize over decisions, while some people don't even seem to think about them. The decision making process is a very personal thing.

I am one of the people that likes to make decisions, about anything, no matter how small, very carefully. When you are as sensitive as I am to so many different things, you want to be careful about what kind of situations you put yourself in.

So, when I make decision, I weight the potential benefits versus costs. Will there be any potential harm coming to me from this decision? If so, how much? If so, is it balanced out by the potential benefit? Will this decision serve a purpose for me, and is it safe thing for me to, given all of my many physical, sensory and emotional needs?

Once I make the decision, I can move ahead feeling secure that I made a good decision. And it usually does work out that way, too. I've gotten pretty good at this whole calculating thing. The times that it doesn't, I can usually accept whatever the damages were by justifying it in some way.

But there are some occasions, of course, when there are unforeseen factors that you couldn't have factored in; or, you knew of the factors and the risk, but simply couldn't have predicted how much effect they would have on you. I guess that's why they call it a "risk."

But, for God's sake, walking out your front door and taking a walk should not be one of them.


I have been having problems with the air quality on occasion for the past two or thee weeks. Not because of humidity, which is my usual problem; there have been a few days like that, but not too many. The first time was roughly about two weeks ago, right before my former high school guidance counselor was going to come over. I open the door and there is this incredibly strong, sharp, pungent odor that immediately starts burning my eyes and nose and making me feel like I'm going to faint. I close the door *fast.*

Now, in credit to my reduced anxiety levels and increased coping abilities, I do not panic about it like I did in New York. I once forced myself to walk to the store to buy crackers in conditions like that in New York, and believe me, did I live to regret it. Full on meltdown over how bad that made me feel when I got back. No, thankfully from that experience in New York, I realized, there was no negotiating, no room for experimenting, that door needed to be closed fast, and I needed to forget about it.

Which I did, actually, because there was plenty to do in the house, unlike any other place I've lived, and I didn't have to panic about not being able to go outside.

I waited a few days before I tried it again, and I was okay. In fact, a week later, on the following Wednesday, I took the longest walk I'd taken yet, to the Town Landing Beach, and enjoyed it very much. I hoped to do it again soon.

But the following Monday, four days ago, the smell was back again, and this time I didn't even have to go outside to know it. It filled the whole house. Why, I have no idea, but that was a very hard day to get through. The smell inside abated by Tuesday, but I didn't dare check outside.

Wednesday, it rained, so I decided I would definitely go for a walk on Thursday (today). After four days of being in the house without any exercise, I was feeling extremely restless. Today was a beautiful day with no rain, and so around sunset, I went for a walk. I did not do it first without contemplating risk versus benefit. I reasoned that whatever pesticides (the first time this happened, there was a "keep off the lawn" sign on someone else's lawn that I saw days after, so I am pretty sure that must have been the reason) would probably be gone by now for the most part; it had been several days; and the rain would have washed some of them away.

Also, when I went for a walk days after the first application, I was bothered a little by a remaining smell close by the house,
but when I got out of the neighborhood, I was fine. So it was worth it. I felt a little out of it when I got back, but not too bad.

This time, however, the same rules did not apply. I went outside, and I could smell it a little bit but I figured okay, it's like last time, I'll walk towards Town Landing and it will be fine. Except when I got closer to the road that took you to Town Landing, the smell got worse - to dangerous levels. There was no way I was putting myself into that kind of situation, so I turned around. Tried to walk to the other end of our street instead. But that got worse about halfway down the street, too, so, not wanting to give up on my long awaited walk completely, I made a circuit from the halfway point of our street to the halfway point of the adjacent street a few times to get my heart beat up a little, until I could stand the smell no longer and went back inside.

I sat on chair in the living room, feeling wasted, flipping through the TV channels to try to distract me a little. I was sure I'd be fine after I sat for a few minutes, like last time. There wasn't much on, and I had people to call, so after 15 or 20 minutes, I picked myself up to go upstairs and continue my night.

Except. My body wouldn't go up the stairs. My chest felt like it was giving out, for lack of a better phrase. I couldn't do it. I collapsed in a small heap at the bottom of the stairs and tried to give myself a pep talk. "You're fine, you're just having a momentary reaction, you *can* go up these stairs." It took a few tries, and more effort than it should have, but I did get up the stairs. And my ability to do so did get better as the night went on. Still, though. It's the breathing thing again. The chest tightness, shortness of breath, can't take a deep breath without it hurting quite a bit, feeling like you're not getting enough oxygen, breathing thing, that scares me more than anything else.

I'm calm while writing this more or less, but I had to work very hard to remain so. I seem to have two different responses to chemical reactions. One is the eyes/nose/body stinging, brain fog, temporary loss of all function - not good, but it always goes away as soon as I get out of the situation or soon after, or hangs around for a few hours in a very reduced form before going away.

While that is worse in the short term, it is better in the long term. Because the other symptom, which I described above, is much worse. And once it happens, it usually sticks around. I hope to hell this time it won't. The average time it stays is around two weeks, but I think that it's probably more that I get used to it as "normal" by then than it actually goes away.

It doesn't happen that often, but it hits hard when it does.


The last time it happened was when I was in Eugene (Oregon). In one of the few times in my entire life that I have acted on impulse, I decided to forget all my rules about basically going nowhere but natural food stores (since those are the only places that I sometimes seem to be able to get away with, the one in Albany, New York a gross exception), and go into a lox store. I wouldn't have done this, except for two reasons: a) I had spent the afternoon going into natural food stores in Eugene, and had had no disasters yet, therefore giving myself an artificial sense of confidence, and b) it was a LOX STORE. IN *OREGON.* I repeat, it was a lox store in Oregon. I didn't even know they knew what lox was in Oregon. Chalk it up to homesickness. Lox equaled home to me. I decided to go into the store, and look at the lox. If you don't know what lox is, you're probably not from the East coast and should google it.

I wish I could explain to you adequately what happens when I do this, in most places. My brain gets so fuzzy, there's like a sense of pressure on my brain and body, everything tingles and seems far away, and I literally, in most cases, can hardly speak. It's like the act of speaking takes up too much brainpower, which has already been sapped up by the chemical reaction, and it makes my brain feel like I am going to explode to speak. So I pointed at what I wanted instead.

I wanted to stay long enough to sample the lox. By the way, it was crappy lox. I guess Oregon can't actually do lox after all. Well, it wasn't inedible, but it certainly wasn't worth coming in for. I stayed under five minutes. And made a beeline for the door. When the stinging symptoms subsided and my head cleared, I thought I was in the clear. As those symptoms subsided, though, I realized I was having trouble breathing. Oh, shit, I thought. Not this again.

It lasted the next two weeks at least. I was miserable beyond belief. Here I was, at this hippie commune in the middle of nowhere, completely on my own, no transportation except when I could hire someone, no sympathetic faces nearby.... and I felt like I couldn't breathe. I just have this vivid memory of being on the phone with my mom telling her that I felt like I couldn't breathe, but of course there was nothing she could do. Walking became harder; I didn't have nearly as much stamina. Even talking felt like it took way too much breath, more breath than I had, for the first few days. Two weeks later, when I saw the guy who drove me again, I had regained functionality but still felt the tightness, the je ne sais quoi that had not been there before. In the last year, my stamina for walking and hiking has gone way down, and as far I'm concerned I can attribute it to the chemical exposures I've had; I never felt like this before.

People occasionally ask me if I think I made the right choices in going to all of the places I did. I say yes, without a doubt.
But in my entire two years or so of traveling, the only thing I really had any regrets about was going into that damn lox place.

Trust a food related item to be my downfall.

Anyway, this is getting long, so I need to end this and make my point, and then go to bed.


The point being, of course, that a) I like a sense of order, a sense of control over my emotional and physical well being when possible, b) I try very hard to order my life to achieve these, and c) when I can't, it scares the hell out of me.

Point also being is that I've spent all week dreaming of what it would be like to go into certain places and not experience a reaction, and was very, very close to asking someone to take me to True North to see if I could tolerate it there and ask if I could do presentations on autism. I was very excited about it. Now this happens and I'm worried if I'll feel well enough to do it, and it just makes me rethink things. I have to be calm and feeling stable mentally and physically to try something new, or else the residual anxiety will mix with the new anxiety and create a total overwhelm. I hope I still can but who knows.

Thirdly, on a more positive note, I am reminding myself that at least this time I am in a much more positive and stable environment, and even if I don't feel well at least, thank goodness, I have things and people to do to distract me from that fact so I don;t have to sit around and think about how I can't breathe. So maybe that will make the difference.

I will avoid outside the next few days, then go and try again, and all I can say is, I hope to hell this is not a problem all summer, and that I feel better tomorrow.

I just don't like getting blindsided this way - or so it feels to me. I don't like having small, everyday things that most people take for granted feel like Russian Roulette decisions to me.

So those are my thoughts about decisions, and the havoc it can wreak when you make the wrong ones. But also how you can't always know and have to do the best you can.

Does anyone else give as much thought to decisions as I do? Do you have any particular decision making process?

Wednesday, April 28, 2010


There are many other things I would like to be doing now, but at the same time I think it is very important to recognize small moments that may occur in the course of a day, that make you happy. Moments that matter, that may be out of the ordinary or may not be. And stock them up for when you have a shortage of them later.

So here are my moments for today, of which a surprising amount occurred:

1. Madeline (I will call her Madeline as a penname) greeted me enthusiastically when I came downstairs and told me she loved my book so far and that she "felt like she was actually there in the cities I was writing about."

2. Mark (also a pen name) telling me that "You're always in a good mood, it's nice to come home to someone in a good mood," when I greeted him when he got home tonight. I was a little surprised but pleased at that comment.

3. A good friend telling me that he would "always be grateful to me for giving him true friendship for the first time in his life." Man. With a statement like that, how can not smile? It feels so good to be meaningful to another person.

4. A relative telling me enthusiastically that she "really, really, really liked" my book, and telling me why. And a 40 minute discussion about it. That was fun, and good encouragement and motivation to work on getting the book self-published, too.

Wow. Today, I actually feel like I mean something to some people. That is a feeling I do not often have. And I like it.

Now to return to the regularly scheduled program, which probably includes working on my book and possibly researching things about cabs in an attempt to maybe write a future article on them.

I won't go into the things I am frustrated about as I hope they will resolve, as all things do sooner rather than later, and I am trying to be grateful right now.

And work on my book. So then I can figure out ways to promote it, sell it, whatever. That would be really cool.

Do you make efforts to try to be attuned to small moments of pleasure and meaning in your daily life? Does it help make up for all the not-so-good times?

Friday, April 23, 2010

Perception, Fear, and Brain Retraining

Perception. It's a topic I've been thinking about a lot lately. So much of the way we experience the world, the way we react to ordinary, every day events, everything about us and the way we relate and function in this world - is all about perception.

So many things can affect perception. Perception is a far from objective thing. Human beings, and the way they experience and react to their surroundings, are both far an objective thing.

Most people with Asperger's or autism, I am sure, wish that the way the world worked was more predictable, and I am definitely one of them. But if you can't change the way the world works, can you change your perception of it?

I don't think, personally, that you can consciously change your perception of things without a lot of other things that you can't control also falling in line. You can say to someone all you want "Don't be scared," or "You can do this," or "That's a silly thing to be scared of, get over it," but it just won't work. It won't work, no matter how much the person themselves might want it to, unless they are in the right mental place. (And even then nothing is ever guaranteed!)

What puts a person in the right mental place? It's important to have relatively low stress levels in your life and relatively low general anxiety. If you don't, your brain is on survival mode all the time, and you can't possibly entertain any new ideas or new ways of thinking, because everything feels so life or death. You need to do and see things the way you always have, because if you don't you feel like you will absolutely come apart at the seams. You have no mental energy or space for risk.

However, if you're in a better mental space, and you feel more relaxed, you feel more able to take risks. You can overlook small problems much more easily. If you take a risk and something goes wrong, you can handle it instead of going to pieces. And if you take a risk and something goes right - well, then it builds confidence for just maybe being able to take more risks - and in the process, it builds the number of experiences you have in your life. The more experiences you have, the more your perception of the world changes.

At least that's my theory.


But while we're talking about perception, I think it's useful to also examine the topic of fear. It's simply amazing in how many ways fear - and the memory of previous traumatic incidents that often cause the fear of something - can control our lives, alter our perceptions and just get extremely embedded into both the body and mind.

It extends beyond fear to simply the perception of what is.
If you're bitten by a dog as a child, you will probably grow up hating and being afraid of dogs (or, some people would, anyway.) If you ate an entire super size bag of pretzels once years ago and threw up, you might consciously or unconsciously avoid pretzels even years later. If you saw an actor in a role you hated, playing a villain perhaps, and see him years later in another, more positive role, you might still harbor negative feelings against him on principle. Memory affects us in all kinds of ways.

Why have I been thinking about this? The reason is the recent doctor and dentist appointments I had in the last two weeks. I had literally tried for years to get up the nerve to make these appointments. Due to chemical sensitivities, it is very difficult for me to go into public buildings. After two years of moving across the country, trying to find a chemically safe place to live, my stress levels were through the roof. Taking an extra risk like going into a doctor's office was not something I could even begin to imagine.

After moving back to Maine, though, and finally falling into a stable living environment, I started to feel a little more confident and comfortable with the world around me. I started to think I could take the risk. It wouldn't be easy, but I would do it.

I did what I used to do when I had to go to an airport, which is an unfortunate neccesity when you are moving around the country. I hyped myself up for it, I talked about it. I visualized it. I imagined myself doing it and being okay; I imagined what I would do and how I would react positively if unpleasant things happened. I got the adrenaline going. Adrenaline has been an extremely important factor for me getting through difficult things.

And I was okay. Both in the dentist's office and in the doctor's office. It was not pleasant, and I had the "Oh my God, this is absolutely awful" reaction when I walked through the door of both, but I was not as agitated as I used to be. I was able to tolerate it better. I was able to acknowledge my dislike of it while not letting it overwhelm me. I knew it would be over relatively soon and I had in my mind the picture of how I would handle it. So I did.

And as a result, my cognitive functioning and reactions were much better than they ever have been before in such a situation. I could actually talk to the doctor and tell him everything I wanted to. In Montana, my doctor experience was so terrible, so traumatic, and the reaction to the building so great, that I literally could not talk more than a couple words at a time when I was in there. I paced back and forth the entire time I was there, including in the doctor's office. If I didn't, I felt like I would explode. I couldn't carry on a conversation with the doctor; I pointed to the print out I had brought. I felt terrible for hours afterwards. After an experience like this, is it any wonder I didn't want to go to a doctor's office again?

I am left to wonder, then, if my experience was better this time because of lower stress levels, which didn't send all my already excited neurons firing at a million miles per hour when I encountered something stressful, or because the building was less toxic. (That is likely, it was a small office, the Montana office was in a large hospital.)

Either way, I marvel at all the ways perception can be affected, and how it can change. If I could harness this power I would, but it has to happen on its own. Events change the way you feel about things. I couldn't have forced myself to be calm enough to go into a doctor's office in New York, Oregon or any of the other places I was in. But when the environment around you is good - emotionally and physically - your outlook, ie perception, changes.

This does not mean, for the benefit of those who may be reading and know me, that I am going to start going into lots of buildings or do all the other things such people probably want me to do, because I am simply not ready at this time. But I am entertaining the idea of it and what it would be like, and that means, in time, if things continue to go well, then I may feel that is worth a try. When I do try it is possible I will find that nothing has changed, that I still get the same reactions as before. And I will be dissapointed but not surprised. But then I may find the opposite. Time will tell, but time is not there yet. You can't push a person to be in a place they're not - and you can't push yourself to either.

I will most likely always be chemically sensitive, and always have problems with going into places. But if I can get my anxiety levels down enough, and if it is indeed anxiety that was causing the more nasty of my reactions, then perhaps I can get them down to a level where my reactions will be tolerable - as long as I don't do it too often.

But again, this is all in the future. A fantasy, if you will, that I keep entertaining. I am not ready for it now. But I hope sometime in the near future, I will be.

One more note on how past experiences can shape perception:
when I was told I'd have to give blood at my doctor's appointment, I was scared. It was a big deal to me. I even asked the doctor about getting a prescription cream to numb my arm. I vaguely remembered having it done in Montana two years ago and being more or less okay, but I was still scared.
I wondered if they'd miss my vein and how many tries it would take.

When they actually did it, it just felt like a pinch going in, and only hurt for a few seconds. I realized my perceptions about getting blood taken were not accurate. When I was a kid, though, because of a medication I took, I had to get my blood taken very frequently. And I apparently had very bad veins as a kid. They could NEVER get my vein on the first try. Or sometimes the second. Or the third. Or the fourth. I remember one memorable time when it took them eight tries! At one point my mom had the doctor give me the numbing cream so I wouldn't feel it anymore.

So, even though my veins are apparently easy to get these days, and even though the experience doesn't resemble that one at all, it is still the first thing I think of when asked to get blood taken. Or at least, I used to. Funny how memory works, huh? It can cloud an awful lot of things.


I recently read about a therapy called a stellate ganglion block. They cut something somewhere, change some neural connections somewhere, and according to new studies and research, it's kind of like resetting the emotional center of the brain - the amygdala, which is the center of the brain responsible for emotional memories and responses. A Chicago Tribune article by Peter Cameron says that "It's resetting the connection between the central nervous system and the sympathetic nervous system." The therapy is still very new but some PTSD patients have found great relief from the fears and anxieties that used to prevent them from going many places and having a normal life. The procedure is usually used to control some forms of chronic pain, and has only recently been experimented on with PTSD (post traumatic stress) patients.

It's an interesting theory to me, because I know from what I've read that the amygdala, and the emotions that come from it, control an awful lot of the way we experience the world. Some people with MCS and CFS (chronic fatigue) have been eagerly trying an "amygdala retraining" program by a man named Ashok Gupta.

Cort Johnson at has a good summary of the Gupta program. He says,

"Ashok Gupta recovered from chronic fatigue syndrome (ME/CFS)almost ten years ago. His research into his condition lead him to develop a new theory of the disease and novel techniques for treating it. He believes that the fear center of the brain - the amygdala - has become chronically activated - causing the body to over-respond to virtually every stimulus presented to it. Over time this results in exhaustion, hyper-sensitivity, increased pain, etc."

In an interview with Gupta, some interesting phrases popped out at me:

"Consider if you’re in a dangerous situation; your eyesight is sharper, your smelling is sharper, your senses are enhanced so that the Amygdala can take in more critical information to give you a better chance at survival. So the question for me is who opened the floodgates?

In CFS the body still thinks it’s being stuck in illness mode – it feels like it’s still being attacked. If you ask patients they’ll tell you that they feel like their body is under attack. They like their bodies are constantly overreacting; that they don’t feel right in their skin. They do feel anxious but it’s not a normal kind of anxiety; it’s a sense of a lack of control over their bodies."

Gupta says that this technique is not psychological, but neurological; it is changing the brain structure.

It's kind of like someone set a ping pong ball going , and it keeps going back and forth and back and forth and it never stops, and in the process creates all kinds of emotional AS WELL AS physical symptoms.

"Amygdala hypersensitivity to bodily sensations and symptoms increases it’s sensitivity to emotional threats as well."

In many ways that last sentence could very well describe my last two years of life. So is there hope in amygdala retraining? Are there actually ways to change our perception of things we'd rather not percieve? Only time will tell.

Beta blockers are another interesting theory - used to cut out physical anxiety symptoms when someone has, for example, performance anxiety. Do they have a place in changing perception?

Sometimes, it feels like help is so close, yet so far away. Most human symptoms and perceptions, I believe, are a mix of physical, emotional and neurological, and you need to work on all three to change perceptions. It is an ongoing process for all of us, but it doesn't hurt to be more aware of how perception alters the way you experience the world - and then let it go when you've done all you can to change what you want to change. Then you need simply to wait, because things usually change again when you least expect it.

Friday, April 16, 2010

Bless the Broken Road

I get a certain thrill out of seeing the familiar blue and white sign for the Town Landing Market in Falmouth, Maine. On one side it reads "Fresh Fruit, Vegetables, Groceries," and on the other it says "Fresh Native Ice Cubes." It's a very distinctive sign for a very distinctive place that has been around for many years.

When I was a kid, we lived two miles away from it, and I would ride my bike to it all the time. I'd go in for one of those delicious 5 cent pretzel sticks, or a Ben and Jerry's ice cream bar from the freezer. There was also a sandwich window in the back, and occasionally pastries for sale in the front.

The bike ride was a straight shot, took maybe fifteen minutes or so. Sometimes I'd just ride to Island Pond Road, which was the exact halfway point, and sometimes I'd ride all the way.

This is significant, because after two years of moving all over the country, from Vermont to New York, Oregon to Montana and back to New York again, I ended up back in Maine, in Falmouth, in a place that is only a mile from the famed Town Landing Market. After what seems like a lifetime of living in places that I just barely tolerated, places that were, in some cases, "a nice to place to visit but I wouldn't want to live there," and in other cases, "what the hell am I doing in this God forsaken city?" I finally figured out a way to get back home - as the Rascal Flatts song says, "Bless the Broken Road," indeed.

So now when I take a walk, I can walk to Town Landing, when I feel up to it. When I approach that blue and white sign, I feel a tingling in my heart. In my mind's eye, I see myself as a child, on a bike, approaching the store from the road to the left of me. You can approach Town Landing from about four different directions. As a child, I approached from one, but as an adult, more than ten years later, I approach from another. Literally and figuratively. But having "ground zero" remain the same - that connects me and makes me feel just a little more whole, to have this reminder of who I used to be connected with who I am now.

I have, on occasion, been feeling grateful lately. Not all the time, of course, because I still have my instances of pity parties, I still have my worries for the future, and I have a whole new set of worries than I did even a few months ago. But again, isn't that what life is about, for things to change? I suppose so, although in my heart sometimes it's a battle to get used to that.

But there are those little moments, where I remember to be thankful for what I have. And then feel almost guilty for not appreciating it as much as maybe I feel I should. Six months ago, a year ago, two years ago - I would have given anything to read a book. As a child, I was a prodigious reader, and would read several children's books a *day*, something I still can't believe. (Good thing they published so many of those Babysitter's Club books, right?) As an adult, I'd lie in bed for hours nearly every night getting lost in a book. It was one of life's greatest pleasures.

When, in April of 2008, I became sensitized to either the ink or the glue in books (I'm still not sure which), due to my chemical sensitivities, little by little I stopped reading until I was no longer able to read at all. The words would swim in front of me, my eyes and nose would sting, and I couldn't get through a paragraph. Like everything else that happened during that time, I accepted it and went on, because the alternative - thinking of it and actually feeling the despair at this was loss - was too horrible to contemplate. All I wanted to do was curl up in bed with a book, though, and it made me so cranky sometimes that I couldn't.

When I got back to Maine, I tried out some old books that were lying around my stepmom's house and found, to my delight, that I could tolerate them. It felt so good to be reading again. After a few months, I got brave enough to try some library books, and also to my delight, I have done okay with them as well. It is such a luxury to be able to lie in bed and read a book that I can't even tell you. Instead of taking it for granted and complaining about all my other problems, once in a while at least, it would do me good to think of how long I wanted this before it happened.

On the other hand, maybe sometimes the greatest blessing is to be able to live your life without *having* to think about things like this.

I could say the same thing about TV. After years and years of not being able to watch TV because the moving images made me dizzy, and hurt my eyes to even look at it for ten seconds, for some reason, I am now able to watch TV again. I get a kick out of watching all the old sitcoms I used to watch as a kid but haven't watched in years, like Gilmore Girls, Bewitched, All in the Family and Home Improvement. And I love having someone to share them with. I think it may have something to do with the tendency these days to have big screen TVs - when I was younger, they were much smaller. Marion's TV is what I could a "normal size," but most everyone else I know has upgraded to big screens, and those still hurt my eyes. It also has to do with placement - due to what I can only assume is some kind of sensory issue, I need to be looking at the TV a certain way and from a certain angle to be able to tolerate it.

All I can say is it I am glad beyond belief to have something in my life besides the computer and the phone to entertain myself. Most people take reading and watching TV for granted, but for years, they were things I couldn't even dream of doing.

They are small steps, but I feel little by little, the pieces of me are coming back again. I just wish it would hurry up and come back a little faster, because there is still SOOO much left I want to do.

I definitely think part of it has to do with the total stress load a person has, which has gone down dramatically since I have been in Falmouth. The stress load on me the last two years, moving to all those places, was so unbelievably high that almost every day now I think of it - a random memory comes back to me - and I wonder how the hell I ever survived it, and for so long.

I just hope and pray that it lasts, and will try to enjoy it for what it is while I have it, and hope that it continues to improve.

Meanwhile, I am happy that I can finally prove these lyrics of one of my favorite Rascal Flatts songs true (just substitute a place or situation with a person):

Bless the Broken Road

I set out on a narrow way many years ago
Hoping I would find true love along the broken road
But I got lost a time or two
Wiped my brow and kept pushing through
I couldn't see how every sign pointed straight to you

Every long lost dream led me to where you are
Others who broke my heart they were like Northern stars
Pointing me on my way into your loving arms
This much I know is true
That God blessed the broken road
That led me straight to you

I think about the years I spent just passing through
I'd like to have the time I lost and give it back to you
It's all part of a grander plan that is coming true."

Or, in the words of another quote that I like, whose source I am too lazy to look up at the moment, "Be patient with the questions in your heart, because one day, without even realizing it, you will live your way into an answer."

Isn't that what we're all trying to do? Live our way into an answer? Some of us just do it faster than others.

Saturday, April 10, 2010

How I Became an Autistic Self-Advocate

I submitted this essay to Newsweek several weeks, or maybe months, ago, but alas, nothing came of it. No surprise here. But perhaps I will find some appreciative readers here. :)


My awakening to self-advocacy began about six months after I received my diagnosis of Asperger's Syndrome.

Asperger's Syndrome is an autism spectrum disorder. People who have it have trouble understanding and receiving social cues. They may appear "off" in their interactions with others. They have trouble making friends. They are often very intelligent, but have no "social sense." Sensory issues often also accompany the disorder; sensitivity to noise, too much going on in the environment, smells, light and such is common.

I hadn't thought much about it for those months; it was kind of at the back of my mind. I didn't see much reason to tell people about my diagnosis; it was just another part of me. Well, that all changed one day at my college library.

I was feeling really groggy that day. I felt overwhelmed and overstimulated by the smallest of things; people's voices, people walking around. I needed a break.

I went into the basement bathroom of the library; the most private one that hardly anyone used. I went into a stall, locked it and just let my mind run loose with all the thoughts and feelings running through it. Some of them, I said aloud. There was no one else in the bathroom, and there usually wasn't. If someone came in, I would stop talking immediately; but this kind of self-dialogue was a big stress reliever for me. Usually, this did not bother anyone; and why would it? It wasn't hurting anyone.

But this particular morning was different. I heard someone come in the bathroom, and stopped talking out loud. Several minutes went by, and the woman came back. She asked me if I was okay. Used to the question, I said "Yeah, I'm fine, just a little bit overwhelmed, I'll be fine," and expected it to end at that, as it usually did. Instead, I got a "Are you sure?" and then the next voice I heard was that of my college security officer asking me to come out. I did so and gasped as I realized college security had filled the bathroom.

They asked me why I had been in there so long. I gasped and tried to respond. "I....I was just trying to calm myself down. I have Asperger's Syndrome, and one of the symptoms is sensory overload. Being alone for a few minutes and talking things out often helps me a lot."

The woman who had started this said, "I'm a psychiatric student at John's Hopkins, about to get my degree. She can't have Asperger's, because she can talk. Asperger's is like autism, and she couldn't talk if she had autism."

I tried to convince her she was mistaken and that Asperger's was very different from what she might have learned about autism. That people with Asperger's certainly could talk, and did so quite well . She threw around a lot of loaded psychiatric terms about emotional instability that scared the college cops. They wouldn't listen to me.

They took me to a cavernous, gloomy office in the basement of the library I had never been to, and questioned me for an hour about my behavior and what Asperger's was. I was shaking and so overwhelmed I could barely talk, but I managed to defend myself. Nothing I said made any difference to them.

Finally, after an hour of this, they let finally let me go. I was shaken. I was thankful to later get apologies from both the Residence Life and Security offices on campus for what had happened. They didn't know any better; most people don't know what an adult with Asperger's looks like. The incident motivated me to want to fix this.

I wanted to lay it down unequivocally: this is what an adult with Asperger's looks like. We have different needs than you. We get overwhelmed easily. We need time alone. We process things differently. We communicate differently. However, we also have many strengths and positive traits to go along with our difficulties.

Thus motivated, I wrote an editorial about what Asperger's was, and sent it to the Baltimore Sun. The article ran on Thanksgiving Day, and I got more than two dozen email replies to it. People told me they saw themselves, their son, daughter or friend in what I wrote. People thanking me for describing them so well.

I was stunned and very happy by the response I got. I felt validated and wonderful that I was able to make a difference. After this, I was hooked on self-advocacy. I was invited to speak at two autism conferences in the Northeast as a result of the article. I had essays published in national autism magazines. I had found my voice; a voice that allowed me to educate the world on what being an adult with Asperger's was like. A voice that gave me a sense of meaningfulness and purpose.

I shudder when I think of the fate of the people that lady from John's Hopkins has treated. I still wish I could have a talk with this woman. But, if it weren't for her, I'd never be doing what I love, and so maybe everything does happen for a reason.

Wednesday, April 7, 2010

The Self-Advocacy Conundrum

Having autism, in many ways, means you need to learn how to stick up for yourself. You need to learn how to politely but firmly articulate your needs. No one else knows your particular needs, so you have to be the one expressing them. Communication helps prevent meltdowns. It is much better to express a need, even if it's not a popular one, and even if you feel embarassed, then to have a screaming or crying meltdown (or worse).

This message was brought home to me last weekend when I was shopping at Whole Foods, as I do every week. I was in the 5 items or less express lane, which is the most narrow check out line. It is bordered on one side by the information/manager's desk, so it is a tight squeeze. There were a lot of people there.

That alone I could have dealt with, but right in the middle of a normally routine transaction, the check-out woman pulled out a bottle of hand sanitizer and sprayed it on herself. A wave of panic rolled over me. I have chemical sensitivities, as well as major anxiety issues over chemical products. There are few things I hate more than hand sanitizers, with their slew of toxic chemicals contaminating the air and making me feel ill.

Now, of course, this was a natural food store, and a natural hand sanitizer, but still, the idea of it freaked me out. I didn't know what was in it - just because it was more natural didn't mean it was necessarily 100% safe - so I had to assume it was dangerous. And I wanted to get out of there.

First, though, I had to complete the cash back transaction I had started. I normally know how to do this, but my brain was frazzled now, and I couldn't figure it out. I looked at the screen frantically, trying to remember what button to push. Unable to figure it out, I asked the woman behind the counter what I should do.

Instead of verbally telling me, she leaned over the counter to show me, until she was practically in my face. My previously controlled low level panic turned into full blown "Alert! Alert! Imminent meltdown! Loss of control in 1, 2, 3...."

I do not like having people that close to me in normal circumstances, but ten seconds ago she had just sprayed the hand sanitizer on her, and now she was right next to me. This triggers all kinds of alarms in me. My brain went into panic mode. It was the worst thing she could have done - but of course she didn't know that. She didn't know and couldn't have known how much her hand sanitizer would bother me. I certainly don't fault her for that.

But still, I had to do something. You know how people say sometimes they can see their life pass before them when they're in a life or death situation? In this case, I could see clearly that I was headed for a meltdown if I didn't alleviate this situation in the next two seconds. Not quite life or death, but same general concept.

(This is novel for me, as usually I'm either in a situation with an annoying level of sensory overstimulation but not an overload or meltdown-producing one, or I go from annoying to overload and meltdown so fast that I didn't see it coming and couldn't have possibly stopped it if I wanted to. It just goes over the top and everything falls apart.)

So I said the first thing that came to mind. I said firmly and urgently, but politely, to the check-out lady, "You need to move away from me."

It worked, and the situation was diffused (and I apologized afterwards), but I couldn't help filling a little bit guilty. I've been thinking about it for days, in fact. I can't help but wish I had inserted a "Please" in there. "Please move away from me" would have sounded so much nicer. I don't like the fact that I basically issued a direct order to her and treated her a bit like a kid. But on the other hand, it was what came to mind and at least it was polite. And it was far better than a meltdown.

It got me thinking, though. I've read a lot about autism self advocacy and I suppose this is just one of many such adjustments we have to make to live in the neurotypical world. We can't be so concerned with going along with the crowd, or worrying about what other people will think of us, that we ignore our needs and ignite a situation that will potentially harm us or others.

Parents of kids with autism have to do an awful lot of advocating for their kids. They learn pretty quickly to put personal feelings of shame, embarassment or self-consciousness on the back burner in order to care for their kids.
I read a lot of autism blogs, and have regularly followed seven or eight of them for some time.

When I think about examples where parents have overcome personal obstacles to better advocate for their kids, in small or large ways, I think about Michelle O'Neil of Full Soul Ahead, who got over a life-long fear of singing in public to help out her daughter Riley during a church event. I think of Jess of Diary of a Mom, whose work on the Inclusion Committee of her school helps build a better environment for her autistic daughter, Brooke, to thrive in. I think of how carefully she plans and approaches communications with other parents in an effort to get them to understand Brooke better. Or "Mom Not Otherwise Specified," who just wrote a stunning series of posts, which should be published in a book some day, about going into her son Bud's classroom to talk to his class about what autism is.

Knowing how to advocate for your kid means knowing when to push and how far. Tanya at Teen Autism demonstrates this art with her eloquent letter writing to the her son's school to improve the level of his services and try to stop some bullying that was going on.

No one has approached the topic of self-advocacy better than Rachel at Journeys with Autism, though. Having discovered her Asperger's diagnosis at mid-life, hers has been a constant struggle of trying to figure out where she fits. It has been a painful struggle of trying to figure what accomodations she can reasonably ask the world to make for her so she can better access it, what instances she can try to override her own needs in order to appear more "socially acceptable," and in what cases she needs (or feels she needs) to simply drop out of the game. So many of her struggles mirror my own, but in different ways.

When to ask for accomodations and when not to? It's a valid question. For some people, there is little question to it. The adjustments they need due to sensory and anxiety issues are very real and reasonable in the situation. Still, when a person just wants to "be like everyone else," it can be hard to swallow your pride - both as a mom and as a person with ASD - and ask for them. There is no doubt that it can be embarassing; but embarassment is in the eye of the beholder, and is an emotion one gets over sooner or later if they want to be at all effective in the world.

The thing about autism and Asperger's is that everything about you *is* different. If you try to hide it, you'll only be doing yourself a disservice; it won't stay hidden and will come out in ways you might not like. It's better to accept it - accept that you will come accross differently to people, accept that people might find you weird, accept that you are occasionally going to have to ask for little things to be done differently for you - but accept it with a smile on your face. If you have to be different, do it cheerfully, that's what I say. Smile at people. Hopefully, the spirit of your true personality will come through, and people won't be so caught up in who's "different" and who's not.

And that means that self-advocacy will stop seeming like such a big deal and just become a normal part of who you are, something you don't think twice about. I think that's a day we'd all like to see.

This also goes for your kids. Be proud of who they are instead of ashamed. They learn a lot about how to feel about themselves and how to interact with others from you. They can pick up your feelings about them. (This is not directed at anyone in particular, certainly not any of the blogs I mentioned above; it is just a general message to parents of special needs kids.)

Self-advocacy: a little communication makes the world go around.

Tuesday, April 6, 2010

Safe housing for people with chemical sensitivities

This is an issue near and dear to my heart, having just spent three years looking for a safe place to live. Chemical products are not good for anyone, but especially not for those with MCS or with autism. You will notice from the biomedical approach to autism that the biomed treatments for autism are nearly identical to those for MCS: detoxification, oxygen therapy, sauna, vitamins, nutrition and so on. The reason is that *some* (I'm not saying all) varieties of autism are caused or made worse by chemicals in the environment. Now, I know this is a controversial issue and I am not trying to start a fight between biomed and non biomed people. I recognize there are many different theories on causes and treatment of autism. I personally think we should take a little from each theory and not put all our eggs in any one bucket. Biomed is just one of many theories.

But enough of that. Whether or not you believe chemicals affect those with autism, they definitely do for those with multiple chemical sensitivity (MCS). I wrote the following for a friend who is trying to build safe housing for those with MCS and wanted to post it here to raise some awareness among my autism readers. Thank you for reading.

Imagine the following scenario. Everywhere you go, the smell of common, every day objects disables you. Perfume, cigarettes, body lotion, someone's shampoo. New paint, air fresheners, pesticides, new carpet. Windex and Comet, and other commercial cleaners.

Perfectly normal parts of modern life, right? Not for some people. For people with multiple chemical sensitivity (MCS), exposure to these fragrances can range anywhere from mild physical symptoms to life-threatening debilitation. People with MCS have adverse health effects to chemicals: difficulty breathing, abdominal pain, chronic fatigue, muscle and joint pain, decline of mental function, memory impairment, asthma and so on. People who are sensitive to chemicals cannot live in most traditional apartment buildings, which are built with toxic materials and often have fragrances left from previous tenants. They cannot easily share housing with others, either.

So where does that leave them? Often, nowhere. The search for chemical-free housing becomes so desperate that many end up living out of their cars. Many move to warmer climates where they can camp out. Many end up homeless. These are people who had lives, careers and families before they got sick with chemical sensitivity. MCS robbed them of their lives. Must it rob them of a place to call home as well?

Many of us take "a place to live" for granted. A safe place to live that we can look forward to coming home to every day. But for millions with MCS, this is just a dream.

James Van Raden wants to change this. He is a general contractor who lives in Minnesota. He has started online groups for people with MCS to gather and has seen the need. He want to build safe, healthy, toxin-free housing for these people and anyone who needs it - and he wants to make it affordable, too. This will not just benefit people with MCS. It will benefit anyone who wants to live in a healthy environment. People with asthma or lung related impairments, or people with a family member with autism looking for a clean environment will particularly benefit.

But, this housing is for all of us. Because after all, we spend the biggest chunk of our lives in our homes. Shouldn't they be safe and healthy for us to breathe in? Shouldn't that be a right everyone has - safe, healthy and affordable housing?

Most people with MCS are on disability and can't afford healthy housing. That's why a cornerstone of this project will be not only that it's healthy, but it's affordable, too. But we can't do it without you. You reading this now. You have the power to help these people - to help a whole lot of people. Won't you help us change the face of healthy, affordable housing and make a pact? A pact to come back here and vote for us once a day throughout the month of April?

People all over the country will thank you when they finally have a place they can live. Your children will thank you, someday, for helping to pave the way to more accepted models of non-toxic building. You can help start a revolution.

All it takes is one click.

Please vote every day, or as much as you can, at

It only takes two minutes to sign up and vote.

Thank you.

Monday, April 5, 2010

If you have an open mind, things may fall out (or, my day in Portland)

East End Beach, Portland, Maine

Sometimes, keeping an open mind can be a good thing. My friend N drops me off in Monument Square in Portland once a month to enjoy myself while he goes to a meeting. Then we meet afterwards for dinner. With four hours to kill, I often run out of time by the last hour or two. Not that I mind; I love being in Portland. This time, though, there was no chance of running out of things to do.

The first thing I saw when I stepped out of the car was a huge blue tent that said U.S. Cenus on it. The census people were there to give information and promote the census. Their tables were full of free T-shirts, caps, pens, keychains, tote bags and what have you. Something novel! Something different! Already, it was exciting.

The weather was a beautiful 65 degrees and sunny. Monument Square was full of people. They were waiting, of all things, for a parade of topless women scheduled to start in a few minutes. Apparently, the women were protesting that men could take off their shirts in public, and they couldn't. When it started, hundreds of people followed them down from Monument Square to a park about a quarter mile away. It was quite a sight to behold! Men as well as women marched, so it wasn't like the women were all in one place.

There were maybe a dozen of them, roughly speaking. The crowd was both male and female. But, it is worth saying, only the men had cameras! Tons of people crowded around them in Tommy's Park, taking pictures. It was so crowded you could hardly see them. The women did not seem to mind; they expected this. It was a very peaceful crowd. I got tired of it quickly and returned to Monument Square to get away from the people.

I talked to the census people for a while, who were quite friendly. One was from Europe and we discussed how different social issues played out differently in the two places. I sat on a bench and enjoyed the sun and the breeze for a while. Then I walked back to the park, where I met a friend of mine I hadn't seen in three years. I had used to see him a lot around Portland when I lived there.

We talked for an hour, and then I left to continue down Exchange Street. There was a guy playing Grateful Dead songs on the street corner! I was in heaven. I thought to myself "I wish they would play 'Uncle John's Band,' and lo and behold without me even saying that, it was their next song! I danced as they sung and left when they stopped. Just one more reason why I love Portland!

I walked down to the water and bakery. Along the way, I saw a man selling stained glass. I usually don't go for crafty things, but the multi-colored peace symbol reminded me of something from my childhood. I felt drawn to it, and ended up buying it.

My friend N came by around 5 to pick me up and we joined our other friends at the East End beach. We walked around for a bit and took pictures, and then went to Whole Foods for dinner. They went to see a movie while I did my grocery shopping. I was exhausted when I finished. I'd been out and about in constant activity for almost ten hours at that point. What a day!

The autism connection:

As we drove home, I thought how I could make this a blog about flexibility and adaptability. For example, not knowing what I would do when I got to Portland but trusting I'd find something to do (flexible). The original plan was for N to take me home before the movie, but I hadn't gotten to Whole Foods by then and we decided to spend more time at the beach and for me to do my grocery shopping when they were at the movie, even though it meant me staying out two hours longer than I'd intended (adaptability).

My friend had to cope with some changes to our plans too that took him a little while to adust to. We all have different tolerance levels for unpredictability and schedule plans. We all have different coping mechanisms for dealing with them. I myself need to have everything planned out pretty exactly. I am far from a spur of the moment person. But I can make minor adjustments if, and this is the big key, IF, I am given time to process them and think them over before comitting to them. I just have to "re-tweak" my brain and then I can usually do the unscheduled thing. But it definitely doesn't come automatically, and only works for small things. And I definitely don't like it, nor would I be able to do it all the time. For me, preparation is king. My brain needs to be mentally oiled for everything I do. I need to imagine what will happen, the possibilities, and prepare myself for the varous stimuli I will feel and have to respond to. Otherwise, a state of huge overwhelm comes immediately. This isn't an obsessive thing, this is a real thing. It's the way my brain works, and I don't mind taking care of my brain and body in this way so I can function optimally.

Anyway, it was a great day, but I think I need a little less in one day next time. :)

To see pictures of my adventures, and Portland in general, please click here. I just put together a slide show of my beloved city.

Sunday, April 4, 2010


When I was with my friends yesterday in Portland, I walked past a man playing a musical instrument and selling stained glass pieces. I gave the man the cursory look I usually reserve for crafts, long enough to make sure there wasn't anything I was missing, but not so long as so they'd think I was interested and stop me. This time, though, something grabbed me.

I am not usually an arts and crafts person. I think the little creations people make and sell on the streets are pretty, and I admire the colors, but I would never buy one. What would I do with it? I don't wear jewerly, and any knick knacks would get lost in a day's time, never to be seen again. Plus, most of the crafts that I might consider buying just for the hell of it are quite expensive and out of my price range.

This stained glass peace symbol, though! Wow! First of all, I love peace symbols. I always have. It's a symbol of my love for the '60s. Second, it was beautiful. The colors jumped out at me. Sky blue, light green, dark blue and dark red. Different but complementary textures of glass. I didn't know why I liked it so much, but my heart was calling out to me in a language I couldn't put in words. I felt connected to that piece. Usually I only feel that way about junk food and music. I was surprised. :)

When I was in sixth grade, my grade class all made stained glass items. I had a very creative teacher. Mine was a heart, with the most beautiful tint of red for glass. I don't remember much about it, but the shape, size and patchwork-style of this piece reminded me very much of my heart from long ago. The school auctioned off the pieces to raise money for some cause I can't remember. Of course, everyone's parents bought their kids' pieces. Even my mom, who swore before the auction that she wouldn't. Luckily, mine only went for $40. Some went for more than $80.

My heart ached for this similar piece in downtown Portland, or maybe just for the memories that went along with it. I thought, well, maybe this peace symbol can be a bridge. A bridge from the person who I was in the past to the person I am now and will be in the future. Hopefully, when I look at it, I will be reminded of strength, and peace, and the healing power of time. Maybe I will just smile at its beauty.

I stood there for the better part of ten minutes, considering, before I finally made up my mind. I wanted it. It was going to be mine. And for only $10, it was quite a good deal. I made up my mind I wouldn't spend more than $15 before I asked the price, and was pleasantly surprised when it fell within that range.

Either way, it's the first crafty thing I have ever bought in my life, and for once, I spent money on something that will hopefully have more lasting value than pack of crackers. That feels good to me.

Friday, April 2, 2010

Autism Awareness Day Social Experiment

April 2, 2010 is Autism Awareness Day. My friend Lydia asked me if I wanted to pass out autism awareness pins in honor of it. I'd never done anything like that before, but I immediately said, "That would be a great idea!"

She sent me 50 beautifully made pins, made out of actual puzzle pieces and pinned to a yellow card that said "Autism Awareness Day: Where do you fit?" I supplemented them with an information sheet I made on about what autism is and local resources (and yes, I put my blog on there, too.) Besides wanting to raise autism awareness, I was curious about the social implications of how many people would or would not accept the pins, and what their reactions would be.

When my friend N and I arrived at Monument Square, a popular gathering place in downtown Portland Maine, we were happy to see a lot of people out and about. We weren't the only ones offering free wares to the public, either. There was a woman with a "Free Hugs!" sign already there. I had seen her once before and loved the idea. I gave a pin and a sheet to her friend, and took a picture of her.

From an operation base by the center of Monument Square, I scouted the territory. I next targeted two men leaning against the wall of a coffee shop. I went over, with Nate behind me, and said, as loudly and clearly as I could, "Hi. It's Autism Awareness Day. I have some autism awareness pins and information to hand out. Would you like one?" They both said and thanked me.

The woman sitting in the outdoor restaurant declined, which I probably should have figured. But the woman sitting against the monument with her cute one year old daughter proved to be very amiable. When we handed her the pin and sheet, she said, "My daughter has kidney disease. Somehow, we seem to go to the same doctors as the kids with autism. So I see a lot of them." We talked for a few minutes, and I took pictures of her beautiful baby daughter. I have to include these because they are just so cute! The second picture is the best picture I took all day.

For the next 45 minutes or so, I targeted people in the square who were either standing or walking slowly. I discovered that stopping people who are walking through generally did not work, and stopping people who were not smiling did not work either. A few minutes after we showed up, yet another duo out to enjoy the sunny weather and the people it brought showed up. They had a big sign that said "Speak About the Future," and a tape recorder. So, we went up to them and spoke about the future. I told them a nice roast beef salad was in my future, because we were going to Whole Foods afterwards. And we gave them a pin and a sheet.

Most people said yes and were quite friendly. There were only a few who refused, and no one I wouldn't have expected to. After alternately taking pictures and handing out flyers in Monument Square for a while, we headed back to the cat to get my coat and gloves. At 49 degrees, it was way too cold for just a sweatshirt. So much for the 70 degrees that had been promised.

It was getting dark, so we headed down Exchange Street to an area known as Tommy's Park. We found several people there to give flyers to. One person there told us he had a friend who had a kid with autism. Then we stumbled upon the should-have-been obvious idea of standing at the intersection of Exchange and Middle and stopping people walking by.

We got four or five people in a row that way. Presumably people on their way to go out to dinner and in a good mood. For every person, I gave my spiel, trying to keep it short and enthusiastic, and then held my breath for a second while waiting for their decision. It was gratifying to some degree, because most people seemed to be pleasantly surprised and then very pleased, giving an enthusiastic and genuine "No, thank *you*!" back to me when I thanked them.

My favorite moment, though, was the party of four well dressed people, mostly men, that I stopped. They were one of the few groups where every single person took a flyer and a pin, to my surprise. And even more surprising, as they were walking away, one of the men shouted out "Wear blue!" It took me a minute to react. "Wait, how does he know about that?" I said to N and R, who apparently did not know about it either. I called after him as he was crossing the street, "How did you know about that?"
"My friend has a kid with autism," he shouted back with a smile.
"But how did you find out about the blue?" I said.

I forget his answer, actually, but still thought it was cool. There has been an Internet campaign the last several days for everyone to wear blue on Autism Awareness Day. I thought the idea was somewhat silly, because the non-autism aware people were not going to have any idea that the blue signified anything. I thought it was just limited to a few people on the Internet. But apparently, this man had heard of it.

We walked down Exchange and talked to a few more people. One was a teacher at a school for autistic kids and said she didn't need to be any more aware, but she took a flyer anyway.

In the end, we gave flyers out to about thirty people. There was an equal number of males and females who accepted, although I didn't keep count. (I had originally meant to.) There were about seven or eight out of around 40 in total that did not accept the flyer or pin. What is that, around 23%? There was a similar number, seven or eight, who mentioned they knew someone with autism after being given the flyer. If one in every 150 has autism, and we talked to 40 people, does that mean that the results were higher than the national rate? I think so. And it was definitely a random sample.

We walked back, me with flyers in hand, and went to Whole Foods for dinner. I thank N and R for their help in holding and passing out the flyers, as well as for their moral support in this endeavor. And thanks also goes to Lydia for providing the pins and the idea. Many people commented on how pretty they were. One person even thought I was selling them, and took one when I told her they were free. I'd love to do it again. I like connecting with people, as long as they are as friendly as this crowd was.

The taking pictures part was also fun.

Thursday, April 1, 2010

On Language

"Aren't you just a social butterfly?" said a friend who was visiting me at college one day. Over the course of the day that she was visiting, I had said hello to a lot of people, and they usually said hello back. This was, I suppose, my way of proving how "social" I'd become. There is, however, a lot more to social interactions than saying hello to someone. It's only the outside that a visitor gets to see.

I called a DJ on a Baltimore radio station once to request a song. As it was right before Thanksgiving, he asked me what I was doing for the holiday. "I'm going home to have dinner with my family," I said. After touching on the fact that most Thanksgiving family dinners could be awkward, he said to me, "But I'll bet you don't have any of those problems, you're so conversational!"

Conversational? Social butterfly? As someone who struggles in most situations and has Asperger's, those are not words I expect to have applied to me. Yet, it's true.

What it seems to come down to do is the difference between functional and social, or pragmatic, language.

When I'm stressed or am groping for words, fancy, formal language comes to mind much faster than anything else. In fact, I really don't know how to put a lot of things plainly. The harder it is to talk about, I think, the more I rely on dictionary sounding ways to say things. This often turns people off, and I hate it - but I really don't know how else to say it.

It's like when someone's learning a foreign language,a lot of what they say will sound formal and pedantic.

It's something that has vexed, perplexed and upset me for as long as I can remember - in some ways, most I think, it is at the very crux of my problems in interacting with the world and with people. As a child, teenager and college student, especially being around other people my age, what frustrated me beyond belief and to the point of tears, especially in college when I wanted so badly to fit in and make friends, was that I could not for the life of me figure out how to sound "casual."

It's something I've always envied about other people. They sound casual. They speak what to me sounds like a kind of social slang that for the life of me I can't even start to envision or imitate. It was especially evident when I would listen to groups of people my age talk.

It was very painful to do actually because like I said I would just be jealous beyond belief of the way their conversation flowed so easily. There is a real difference, I have found, in the ability to communicate - to functionally use words to get across a set of
ideas - and the ability to communicate in a social way - to have a control of nuances of words, tones of voice, and other parts of language used to communicate effectively in a social way. This is the difference between functional and social/pragmatic language.

There is no doubt whatsoever that I can do the first one. If I were to take a test of communication skills that were based solely on the ability to use words to communicate ideas, I'd probably come up extremely high. But if I took a test measuring my ability to use communication appropriately in a variety of social settings....I'd come up very low. And that is very frustrating.

It reminds me of hyperlexia in a way - that's a term often used to describe something that is common in many young kids with AS, and it means this: these kids can read very, very fast, and they read everything. They are obsessed with language and everything verbal. But they have very little *comprehension* of what they are reading, and often need a lot of extra help in reading comprehension and learning how to use their verbal skills appropriately.

I am great verbally but can't read the hidden messages. So that's why I so often feel shut out from a conversation, or ask too many questions about what someone meant, or to clarify, or misinterpret, because I'm missing a lot of the messages that go behind it. Sometimes I'll have a conversation with someone and from an analysis of what was said, I feel, this should have been a good conversation, we covered a lot of interesting things.

But I feel no sense of connection with them, and there wasn't the flow I would have liked. I find that just about the most frustrating thing in life - that I have all these skills to be able to communicate with people, but very few to no skills to actually feel close to someone or get the emotional satisfaction out of conversations that I would like.

I think that explains though why in college I could have really deep long conversations with someone once..... but then never be able to develop them into friendships. It used to frustrate me to no end and I spent hours in college crying over trying to figure out why I couldn't do it. Why could I talk to someone for 2 hrs once by chance, but never develop a friendship with them or anyone else? I just couldn't figure out how a friendship worked. It killed me. But I realize now, the skills needed to talk to someone about a specific subject in a specific setting in one time limited circumstance, are different from the very nuanced skills needed to develop and maintain a friendship.

This is why Aspies often sound as like they are "human textbooks" when they talk. They are most comfortable in the world of facts and concrete words. They may have learned most of their language from books, instead of from practicing it in social situations with other young kids like most non-autistic people do. So instead, the language will often come out quite stilted, formal, and, well, like it's from a textbook. Because it very well may be.

Someone once told me that I communicated fine, when I said that I needed to work on my communication skills. "There is nothing wrong with your communication," they said. Why, then, I thought, did I have so much trouble making friends? Why did I seem to turn people off so quickly? Overwhelm them so fast? Why was it so hard for me to keep a conversation going? Why was it like pulling teeth to know what to say? Why did everything come out so *wrong*? I didn't know how it came out wrong, but I knew it came out wrong. I could see it in people's faces. This is a feeling I dealt with all my life before I got diagnosed with Asperger's - not knowing why the hell I felt so DIFFERENT. Not having words for it is the hardest thing of all.

Functional versus social communication. Why is it important? Because one just helps you get by, and the other helps you connect to the world. How can you develop social communication i n someone who doesn't have it? Practice, therapy, or simply being resigned to socialize with other Aspies who understand and employ a more literal form of communication (or non-Aspies who are patient enough to see past your differences and try to understand you.) Trying to have what you can't conceive of will drive you crazy faster than anything you can even imagine, so in the end you have to be happy with what you have and make the best of the skills you do have. But it never stops being frustrating.