Saturday, July 24, 2010

On the Matter of Empathy

I very much want to write this entry. I have not been able to focus of late. I believe it is the air. It is driving me crazy. I feel like there is a physical weight on my body and mind and it makes it hard to even type or keep one train of thought for very long. But for some reason even typing continuously lately, much less doing that WHILE keeping a continuous train of thought ,has been hard. So, I am going to try very hard to do this.

This is a topic that has been brewing in my mind a lot lately - actually, on and off for the last month. I very much want to get it down on paper, so to speak.

The story starts on the night that I learned Madeline (pen name for my roommate), had gone into the hospital. She is 93 , and her ankle was swollen and bleeding. I did not know this all day Friday, until M (her son and my other roommate) came home around 9:30 to tell me.

That night, I was in a bit of shock. I felt so bad for her. I care very much about Madeline and am closer to her than a lot of other people. I feel a connection to her even though there's not a lot we have in common on the outside. So , that night, I was feeling very badly for her. A hospital is not a nice place for anyone, but especially not when you're 93. I kept remembering the stories she had told me about one time years ago that she had been in the hospital, and how much she hated it, and especially how bad the food was. I imagined her in that hospital room, lonely and frustrated and.... well, the main thing I kept thinking was alone. Maybe that could partly be attributed to my own hospital stay, years ago, 13 in fact (!!!), where the primary thing I felt was loneliness. I just hated beyond belief being there while everyone else was living their lives. It was not a pleasant feeling. So accurate or not, I ascribed it to her. And I thought of the food, of course. And I felt a sense of....powerlessness, of wanting so bad to just do something to help her, to make her feel better, to make her happy in some small way, but knowing there wasn't anything I could do. I couldn't help that she was in the hospital, of course. I could write her notes and send her small gifts - and I would and did - but that wasn't enough.

And somewhere in that night, as I frantically IMed disjointed thoughts to a friend while trying to process everything, I realized something. This feeling of wanting to help and feeling bad for someone ... a feeling that it seems for many people is hard to put into words... is probably what OTHER people felt towards me when I was in emotional distress or had problems, and they wanted to help me, but didn't know how. Or thought there was nothing they could do. In that instant, I caught a brief glimpse of what I SHOULD have been feeling all of those numerous, probably hundreds of times that people had tried to unsuccessfully comfort me. Why was it unsuccessful? Because for whatever reason, most people can't put their feelings into words. There seems to be an unspoken agreement among NTs, furthermore, that they don't NEED to put their feelings into words, because their feelings in certain circumstances are automatically understood, since they are "typical" (???) and commonly understood feelings for certain situations.

Now, take me and most other ASD people. We do not know what the "typical" feelings to have in any given situation are. We have absolutely no clue!! We need to hear verbally, in words, in very definite and descriptive and precise words, exactly what someone is feeling to have any idea in hell what they're feeling. We can't tell from their face. We can't guess - or if we can, it's a very rudimentary guess. If we're lucky and experienced at this, we can make a logical assumption, but logical assumptions, I have to say, are not very comforting.

I have always needed to hear the WORDS when someone is trying to comfort me, but here's the thing. Most people don't have words. And that proved disastrous to me, time after time. Because I would be crying, I would be revealing highly emotional things, and I'd look across to where the person was sitting. As far as I could tell, they weren't responding at all. They weren't listening. They didn't care. They didn't understand. (When in fact nonverbal language was probably saying otherwise.) This feeling of aloneness and isolation that this realization - they don't understand- brought on made me feel 100 times worse. In fact, if often made me cross the line to hysterical. Which would scare them and make them become even more remote (and brand me as the world's biggest baby), which would reinforce the cycle, and it'd go on and on .... sometimes only until I had exhausted myself in hysterics. I shudder to think about it. Relationships get ruined this way. Over a simple misunderstanding of communication. Of not being able to read each other, but thinking you can.

If I apply this newfound knowledge to this situation, I can get a glimpse into what they were feeling. Empathy. Caring. Wanting to make things better, but not knowing how. Powerlessness. But they didn't know how to put these into words, and I honestly had no idea they were feeling it. It might sound thick, but it's the truth. Autism is in so many ways a disorder you have to live out for an awfully long time before you figure out all the many and myriad ways it affects you and the people in your life.

I have a pang of sympathy and understanding for these people in my life now, when I think about this. Maybe a fleeting feeling of connection. But that's all - fleeting. This knowledge is still too new. It's like I got a glimpse of it and that's great, wonderful, but it will take more than a glimpse, I'm afraid, for me to be able to put it in practice. But I will try. I will try to remember what I felt like about Madeline the next time I'm trying to figure out how someone is feeling about me. I don't know if it will work, but I will try.

Why is autism all about having to make logical connections in the place where in others, emotional connections exist? I don't know, and I'd really like to. But it's like building the brain from the ground up, and if the autistic person does not have particular experiences to rely on to understand what a particular emotion feels like , then they might be able to understand it logically, might in time learn that this is what people are *supposed* to feel, but they will never really feel it, in themselves or others. And this lack of emotional feeling about others - this lack of connection, this wall - is in many ways it seems the heart of autism. So many connections need to be made in the autistic brain - and unfortunately the experiences, friendships and social experiences an autistic person needs to make them are so often missing, not from any fault from the parents or others, but just because the very traits an autist poses makes them far more unlikely to make these kind of relationships.

You may think I am saying that autistics don't feel emotions towards others. I am NOT saying this. The myth that autistics are not capable of empathy is pure bunk. BUT, I am beginning to think, it might have to be learned. I think that all emotions autistic people (or most autistic people) feel towards others are based on emotions they have felt themselves; and if they have not felt those emotions themselves, because they are missing the social experiences to have created them or are just developmentally behind, they won't feel them.

So this makes it critically important that people with ASD be exposed to a wide range of experiences, BUT. Shoving them into experiences unprepared isn't going to do much good; if a person is scared and afraid, as many ASD people are about new experiences, they will shut
down and not be able to connect with anyone or anything. So the key is to figure out a way to expose them to new things while they're in their comfort zone, while they're relaxed enough for their brain to be able to make the new connections. I.E. it's safe to care about this person; I like this person; she is not a threat; several months later....hey, I actually feel connected to this person! Fear and anxiety will prevent these connections from happening. But how to do this? I have no idea. Sheer, dumb luck is what it seems to come to; unless you can use your child's speical interests to manipulate or set up friendships or opportunities for them in places they feel would be a hard thing to do, it seems.

Okay, needed a little break. Let's see if I can finish. A good example of this is a person who is very close to me who I shouldn't mention in case this story is at all offensive, which is not intended to be. For years, I have called this person up and talked to him about a great many topics. I love him very much. And he usually understands me quite well, a fact I find quite comforting. But there is one thing that he doesn't understand, which has always puzzled me. If I am upset over something, I want people to react verbally and/or visably - NOT because I want to "manipulate" them in some way or make them feel worse than my news might already make them feel, but so I can UNDERSTAND what they're feeling and I don't have to feel so alone. It seems obvious to me , but for some reason to many it is not. ANyway, so many times I talk to this person and I mention something I am upset about. If this person does not react, or does not verbally tell me how it makes him feel, I often get very upset, because I have no idea what he is thinking. For all I know he could be thinking very critical things of me like that it's all my fault. So I ask him to tell me how he feels, and he says "You KNOW I feel bad for you, you KNOW how I feel, why are you always asking? You should understand!" He seems to feel very firmly that I should know his feelings. But I don't. I don't know. And even if he's been able to understand and sympathize with my feelings a hundred times before, how do I know he does this time? This has always bothered me, and of course him too. I suppose it is two different ways of thinking.

It seems that not only is it very hard for autistic people to understand that there is a different way to think, it is just as hard for non-autistic people to understand that autistic people, especially ones that are seemingly very smart in other areas of their lives, could not understand something as basic as this.

Again. You learn by doing. You learn by experiencing. And for some people on the autistic spectrum, it can take 20 years or more to even start to understand and experience something most kids probably do at age 4 (or whenever). That's why they call it a developmental delay, I suppose.

I have heard many ASD people say they have trouble connecting with and feeling close to others. I feel that if you protect yourself too much an never get close to anyone - even if you don't realize you're protecting yourself- , you never feel what it is like to feel close to someone - and so therefore you can't feel what it is like for them to be close to you. If that makes any sense. It is not ASD people's fault that they have trouble making friends - but it does seem to be a vicious cycle in many ways. You can't just turn defense mechanisms off when someone asks; I think the situation has to be right for them to fall away.

Most people with ASD are quite smart in other ways, though. They find ways around their blind spots. The therapist who diagnosed me told me something like, "Instead of understanding things intuitively, you make these logical connections in your brain - but you make them so fast, it's sometimes hard for people to see that you had trouble understanding the concept in the first place." Or something like that. The only problem is - logic can only take you so far.

I wasn't a big fan of this therapist in some ways, but I always thought that was an intelligent statement. If I ever get the ability to go into buildings back, I would really like to see a therapist. I have been recommended one who sounds good, too. Maybe in the fall when the heat isn't stressing me out so much I could try. Maybe.

Anyway...more thoughts about my life. These do not apply to all people with autism; they are just my life and experiences as I see them.

Saturday, July 17, 2010

2010 Yarmouth Clam Festival

Today was the long awaited Yarmouth Clam Festival, a tradition in Southern Maine every year. I am sure it's got to be one of the biggest festivals in Maine. The Clam Festival was what I missed most about Maine the last two summers; it was always just such a part of my growing up experience that I hated to miss it. I've been looking forward to it for at least six weeks and despite all my nerves, had quite a good time in the six hours N, R, R, I and various other AS group members spent there today.

Nate picked me up and we arrived there at about 1. Or, I arrived at 1, the rest arrived around 1:30, which is kind of a longer story. It was so exciting to see the street with people lining both sides of it (waiting for some kind of firefighter demonstration), and the famous HUGE food court with its red and white lettering to one side. Fried Clams! Strawberry Shortcake! Fried Dough! Soda! etc. There are probably about 20 stands and they go in a semi circle around a picnic eating area. On one side is a tent where concerts go on called the Memorial Green.

On the other side were the rides, and tons of them. What sheer eye candy! I walked around snappy pictures, trying to capture the essence of the amusement park, the essence of the spirit pervading the place, the joy and action, the colors and fast speeds. The cotton candy, candy apples and fried dough mixed in with the arcade games and colorful, whirling, spinning, as fast as the eye can see, guaranteed to make you barf rides. It's an interesting kind of meditation to be wandering around not focusing on the rides themselves, but on documenting them in pictures. It's relaxing, actually, and that area of the Clam Festival, with its long line of games on one side, is always fun to wander.

I wandered back to the area with the food, and ran into Nate and the group without even trying to. Pretty surprising in a place as big as this. We got some chairs and sat for a bit while we waited for No Banjos, the 2pm concert, to start. A fellow Aspie group member was in the band.

I have to say it was relaxing, to sit there in the shade in a comfortable chair, with friends, and listen to good music. It was covers of 60s classics,mostly British. It was too short - only 6 or 7 songs - but fun. When they did Last Train to Clarksville by the Monkees, I got up and danced, as I love that song; Nate even got a picture. It was followed by a high activitiy up-tempo Beatles song (maybe All My Loving but I can't remember) which I enjoyed just as much. The rest were down-tempo and mostly unfamiliar, so I stayed seated, except to go to the front to snap pictures of the band. :)

At 3, we went over to the rides to explore. There was this super awesome thing I found on my first walk through - they put you in huge plastic bubbles!!! and put the bubbles in the water in a large swimming pool. They put you in, zipped you up, and then inflated the bubble with air! You could then roll around the pool . I actually thought it looked like it COULD be a lot of fun but the idea of being trapped in a giant plastic bubble was a bit too claustrophobic to consider. It was, however, a LOT of fun to watch, and I was very pleased when both N and R agreed to go in!
Snapping shots of them in their plastic bubbles was just awesome, a creative challenge, lol. Never seen that before, must be the new thing.

We tried to get tickets for the ferris wheel; however after a long drawn out process to find and buy the damn things, the one ride I wanted to go on was closed. Oh well. Some of us got things to eat and we headed to the games. There were 5 new Aspie group members I had never met there , well, I think only 2 who stayed with us but still. 3 of us tried the balloon dart game, which has always been my favorite. One of the other girls said to me "I'm just doing this because this is what I used to do when I was a kid," and I said, "I'm doing it for the exact same reason!" I got a big fat red balloon on my 2nd try. The very friendly older operator of the game gave A and I the kids' rate even though we were both in our 20s, lol - so we both got a medium sized very cute stuffed dog and as many tries as we needed to get it! :) Best, and by that I mean least crappiest and certainly biggest, arcade prize I've ever gotten.

We then headed uphill to the craft festival. Fortunately, the hill was not as formidable as I remembered it, nor the weather as torturous as I had feared. The craft festival, while still as big as ever, was actually quite boring, but this was all the more for the better - I only had 40 min to get back to the Blaine concert, so "boring" was welcome for once.

We sat down to relax for 15 min before we trekked down the hill again for the Blaine Larsen concert. Or shall I say, I trekked down. They got stuck somewhere halfway down and I left them in the dust in my eagerness to see my beloved Blaine. :)

Blaine Larsen is a 24 year old country singer who first hit it big about 6 years ago with his haunting song "How Do You Get That Lonely," a follow- up to the just as amazing , goosebump producing "In My High School." When I was in college, I got a friend to take me to see him at a local mall and it is one of my happiest memories of college. It was a very intimate concert of only maybe 30 gathered around in a decrepit, falling down mall to see an extrodinary singer.
I loved it.

So when I heard, a couple weeks ago, that Blaine would be at the Clam Festival FOR FREE, in another small intimate setting, I just about went crazy. I had eagerly awaited it for weeks and couldn't wait to tear down that hill and get to Blaine. Finding a place to sit was difficult at first, but ultimately prosperous. I started on the bleachers on one side, discovered we were permitted to stand at the side and watch him from 2 ft away, went back to bleachers to rest, and ended up watching him from an even closer distance on the other side of the stage for his last song. Not bad!

He started with some song I didn't know...then went into I Don't What She Said, which I did know...1-2 more songs I didn't really know (his voice still sounded good but I much prefer familiar songs), then into "It Did," a song I really like. I ran to the side for that so I could get a good view and have room to move around and sing along. :) After that I felt better cus I figured whatever he sang after I'd at least gotten one good song in. He did a couple more ones I didn't know, THEN, came the moment I had been waiting for. "This is my very first song that ever went to radio, about 6 yrs ago, I wouldn't be here if it wasn't for this song..." My ears perked up and I ran back to the front from where I had been sitting.... it was time for the hauntingly beautiful "How do you get that lonely." I saw him sing it 6 yrs ago in Baltimore, and now the circle was complete by seeing him sing it again in my home state of Maine.

He finaled, of course, with his current single of "Chillin'", a popp-ish summer kind of song that has caught on mostly because it is a pop-ish summer song that doesn't make you think. Not my favorite song, but a decent one still. I was right in front of the stage snapping a picture when someone (from his staff) came out and dropped a huge tin of water on him! It was a joke because the song was about "Chilling." Everyone laughed. Blaine said, "Oh, so is THAT why you asked me how expensive my guitar was earlier?"

He then resumed the song, to much applause when he was finished. 50 min approx. Great show overall. Then it was time for autograph signing - I was one of the first to get to the WPOR table in the back, so I got very lucky - I noticed people were getting their pictures taken with him so I called Nate and asked him to come over and take a picture of me with him. Which actually worked! I didn't even have to wait that long, and I got to talk to him - I told him I' been at the Baltimore/Towson show and he said "Wow, that was a long time ago" and that I liked the song In My High School; he thanked me profusely. Then I asked for a picture and N got a great one! In my head last night I was dreaming about how cool it would be to have a picture taken with him but I didn't think it would actually happen!

Kate with Blaine Larsen!

It was too late after Blaine to do the other 60s concert or any rides, which was fine cus I was pretty tired by then. So we sat by the food and chatted for a bit before we left. We were all pretty tired.

I enjoyed the feeling of connection, of having other people to do stuff with. It was funny trying to do it with a group of 8!!! But we all moved together very well actually an people got along too.
At any given point we were always trying to figure out where someone was ("Where's N? Where's R?") lol but we found each other and reunited pretty quickly. It was a nice feeling of belonging to even have people to worry about missing in the first place.

So, I returned to the house hot, tired and more sunburnt than when I left - although not signficantly so - but overall happy, although it took some time to process this all.

Ready for several days of relaxing, I hope, and returning to a normal sleep schedule. Weather still hot, challenges still many, but I hope to use days like this, as overwhelming on some levels as they can be, to propel me forward and give me something to look forward to during those times when everything else seems to be going badly.

Happy middle of only six weeks left of (yay) summer.

Kate playing with darts

Sunday, July 11, 2010

Sebago Lake

Time for another photo essay. It has been very hot and humid here in Maine and the entire Northeast. I do not so much like it, as seems to be the opinion of most people. It's been crazy....high 80s and low 90s with record breaking humidity for days on end. Originally I thought it would last just 3 days, then a week, now it seems like, well, let's just say I might have to get used to a new kind of July. I have heard the humidity is suppose to temporarily go down for one day tomorrow, but with a high temperature of 88, that isn't much of a consolation. Sigh.

However, today after a week of wanting to, I finally was able to go with my friends N and R to the lake at my dad's house. He lives on Sebago Lake, the second biggest lake in Maine. With a floating dock, noodles to swim with, and kayaks, it is many ways a perfect summer destination.
I had not been swimming in about three years, a huge shame because I absolutely love swimming. When I was a kid, I was never happier than when I was in the pool. Before the humidity started bothering me, I was in the lake a lot during summertime when I was at my dad and stepmom's. Then I was in Oregon one summer and Montana the next time, so it had been a LONG time since I had been swimming.

You know how they say the phrase "easy as riding a bike" or how people think once you learn how to ride a bike, you never forget? Well, I'm not quite sure about the bike part, but I know swimming is like that. It's a beautiful feeling, to be able to pick up something so easily that you haven't done in years. The water felt cold when I first went in, as it always did, but then it felt great; soothing, surrounding you as if in a big hug. The dock was still the same; the metal bars are great for grabbing and playing around. I dunked my head in and the rush of cool water was delightful and surprising. Thus baptized, for lack of a better word, I set out to swim to the floating dock, following N and R.

Here's the other thing that surprised me: how easy swimming was. I had been afraid that
swimming might be too hard after not having done it for so long, or more likely, that I would not have enough breath to swim because of the air quality (which was thankfully okay today).
But it was so intuitive; reaching out to the water and saying "Here I am," reaching out to the water and pulling it toward me, just a few easy strokes with my arms and look how far I've gone!
Holding on to the floating dock and gasping for breath, waiting to catch my breath, just like old times. (It seems easy until you stop, lol.) I couldn't swim very long before getting out of breath - but that was true before too - but what I could swim, I enjoyed.

So we sat on the floating dock for a while, entertained by each other's conversation and the sun and water around us. I jumped into the lake from the dock for old time's sake. I was actually kind of nervous doing that. Took a few minutes to get up my nerve. But it went fine, although due to the force of impact it's something I'd only do once. I used to love the feeling of shooting underwater, feeling the water get colder as I went down further, and seeing how far I could go down before I had to go up again. N said he thought I was never going to come back up again. :)

We returned to the shore and the dock there, and grabbed some colorful noodles to sit on and play with, another thing I always used to love. The only thing I didn't do this time is swim on my back, because the water was too rough and would have gotten in my ears and eyes. Come to think of it, it'd get in my ears either way, so swimming on my back may not be a good option.

N, R and I

We also had some fun on the hammock. Rocking back and forth on that thing is about the most relaxing thing I can imagine, and I intend to do it more when I have clothes instead of a bathing suit on, which I figure will be more comfortable.

We had some of my dad's special house-made smoked pulled pork (heat and humidity and pulled pork, Gee, this place is getting more and more like the South every day. If I see someone serving sweet tea, I'm going to run. lol.) Then we went to Whole Foods, N did some shopping for his stepdad while I grocery shopped. I thoroughly enjoyed shopping in an air conditioned environment. Whee!

The only thing that will take some getting used to is this sunburn - which of course I didn't notice until I was home and saw it in the mirror, isn't hat always the case. I have the classic bathing suit strap marks - lol been a long time since I had those. I don't think it's a particularly bad one, but it's definitely more moderate than the very mild ones I've gotten so far this summer. Ie I can actually feel it. But hopefully if I am patient and wait patiently a few days without getting upset, it will go away. It usually does. We went so early in the day, we were there at 1, that it was unfortunately prime sunburning time. I wonder why you never feel yourself getting sunburnt till you are.

My stepmom gave me an old bathing suit that she had which I was very happy about. It fit okay and is the most beautiful shade of purple. I don't love wearing bathing suits, but they are a necessary evil for swimming.

I felt quite good, although tired, when I got home; but then I tried to watch 60 Minutes and I was falling asleep in the chair, so I went upstairs to rest .

I am afraid it may be another unseemly hot and humid weather week coming up so I will have to gather all my patience to get through it again. Patience is key. Then next Saturday is the Clam Festival I have been waiting for for months. The one thing I probably missed most about Maine the last 2 summers. Let's just say I will kill the weather gods if there is not passable weather that day.