First things first, I suppose a little introduction is in order. They usually make me uncomfortable but since we don’t have to guess who is going to go first this should be a little easier. Besides, there is nothing in this world I know more about than myself, the hard part will be keeping this short and sweet. I am 30 years old, and I just discovered a few weeks ago that I have Asperger's Syndrome. In the grand scheme of things this doesn’t change anything, I’m still exactly the same person I was before I figured out why I am so different, and yet at the microscopic level at which I examine myself it’s monumental. This has given me something I have searched my whole life for, perspective. I have found my voice. I hope to help others find theirs. Welcome to my world.

Saturday, November 17, 2007

Out of the darkness

I’ve been struggling for as long as I can remember to explain the world the way I see it. It’s not as easy as it might sound. For a long time I couldn’t figure out why no one understood the things I was trying to explain and so I learned to hide it for fear of being told it was all in my imagination. I would write on scraps of paper, tiny tidbits about the way things looked and felt to me, and hide them inside books and up inside my closet. When I did venture to speak of the way I was feeling I generally found that people did not understand. The frustration of trying to put the pieces together in a way that they could fathom would overwhelm me, and before too long I would be bawling my eyes out. This made me seem over emotional, and granted I was at that exact moment, but it was always a symptom and never the problem. I knew this, but I didn’t know how to explain it to them.

I’m not bitter any more. I was for a long time, but with the knowledge I now possess I can’t have expected them to have any idea what they were dealing with. Aspergers had barely even hit any ones radar and by the time I started exhibiting signs I had learned how to fake it in most situations. The focus has always been on diagnosing the young, and less care was taken with adults; because we have good language skills, and are often highly intelligent it can be difficult to spot. I’m very good at faking it when I have to, I just prefer not to because of the amount of stress it causes me.

There is a common misconception that because people with Aspergers don’t process social cues on an instinctual level that we are not good at reading people. I am sure there are people with Aspergers who struggle with this, but when I am outside of the situation I am exceptionally good at it. I’ve spent my whole life studying people and the way they interact in an effort to be more like them. I have a huge mental database of people I know, situations, and reactions that I can cross reference with relative ease when I am calm and relaxed. There is no pressure when I am a bystander and if my perception is wrong, no risk of reacting in the wrong way. Put me in a situation where I have to take part and all of a sudden it’s a race against the clock to interpret the social cues, and missing just one can spell disaster. The stress of trying to keep up can overwhelm me and cause a short circuit in my database and then I may as well be a fish out of water. The more aggravated the other person gets about my inability to communicate, the worse this gets, until I am in full meltdown mode. I worry about this all the time, its easier to just stay home.

So I do. I stay home and I fixate and I try not to explain myself to too many people. Well at least I used too. With the addition of one new word to my personal dictionary I have discovered the ability to share myself, all of myself. I have found a way to put into words my different perspective of this world we all share. I have found a place where the child in me can roam free in my garden of thoughts, and where the adult can sit and ponder the mysteries of life. I have found a way to throw open the gates and let others pass through the thorny vines that have grown so long and so fierce about this gilded cage. I have found the freedom to be me. Out of the darkness I created for myself, the perceived safety of my imagination, and into the light. The fires have been stoked; all that’s left to do is explore the shadows in the safety of its glow.

Through These Eyes

Socializing

They called me socially phobic for years. At first they implied that this meant I was afraid of people and I snickered behind my hand, I’m intrigued by people and the way they behave, but I am certainly not afraid of them. They reiterated with the qualification that I was afraid of negative judgment, and they got a little closer to the truth. Then they had to go and say I had poor self esteem and attending a workshop would help me with that. There is nothing wrong with my self esteem, the things I am good at I excel at and the things that I’m not good at I accept. Socializing is one of the things I’m not good at.

I don’t understand all the rules. Human beings make so many rules for the right way to do this or the wrong way to do that. Rules for saying hi, rules for saying goodbye, rules about how long its ok to talk about one subject, rules about how long you should talk about things that have no meaning before you can talk about the things you want to talk about, rules about how you should act when someone else is talking about something you have no interest in.

Most people don’t even see them as rules, for an NT these connections happen without thought. It comes natural to banter back and forth about things you don’t care about. It’s friendly to stand around and chat about the weather. It shows that you care about people when you take an interest in their interests. Most people instinctively know when its their turn to talk, when its ok to initiate conversation, and when its appropriate to make their excuses and carry on with their day. Its not that I don’t know these things, it’s that for me they require an extra step in the thought process. This can make social situations highly stressful.

Most people also have wide and varied hobbies and the ability to take at least a passing interest in the things that appeal to their friends. I have a hard time talking with anyone at length about any topic that doesn’t interest me and these are few. I have *fixations, a few topics that I know a great deal about. I have extreme difficulty engaging in any activity that doesn’t involve one of these. My mind starts to wander and I find it intensely stressful to maintain the appearance that I am listening and interested. It takes conscious effort stay within the socially acceptable parameters of chit-chat, something I don’t understand the concept of in the first place. A wandering mind interferes with that, and I can’t help but think my time can be used more efficiently. This isn’t intended to offend anyone, it just is what it is, and although I can fake it sometimes I really have to wonder what that is doing for anyone in the long run. Faking it just doesn’t seem right.

This is doubly hard when I am working on a project. My state of mind is difficult to describe at these times. I have to pay very close attention to my behavior or I risk disconnecting from the world at large completely. Interruptions aggravate me, and I have to be on guard against snarling at people for doing the things they are entitled to do. I am aware that they are doing nothing wrong and this goes a long way, but when I am all wrapped up in something it makes it damn near impossible to focus on my tone of voice, body language, and facial cues. People who want to be around me at these times need to learn to rely on the words I am using and ignore the social cues I am presenting.

I can only imagine that ignoring these takes just as much conscious effort as it does for me to maintain them in social settings.

*(in no particular order):
Late Roman (approx 300AD) – early Middle Ages (approx 900AD)
Psychology, Sociology, Philosophy – The science of people.
Sex and Pain
Nature
Baking

Living life one minute at a time.

Every day dawns new for me. It’s always been that way, for as long as I can remember I have been telling people to leave the past where it belongs. I don’t regret, or dwell, or mourn the things I once had that I have since lost. I’ve always just known that no matter how much something hurts today, and even if it still hurts tomorrow, that there will come a day when I hurt less and there will even come a day when I don’t hurt at all and that loss will be just another memory in a long stream of them.

People for the most part confuse me. Their tendency to dwell in a past they can’t change or on a future they can’t possibly predict never fails to amaze me. That they would sacrifice their happiness now for what they think might make them happy in the future is a concept I simply cant wrap my head around. I live in the moment, taking happiness and sadness as they are presented to me, accepting success and failure as they happen, and in the case of the latter picking myself up, dusting myself off, and moving ever forward no matter how slow the pace. I have no real plan, no idea of what I’m going to do next year, just a few ideas and the willingness to see where they take me.

When you are a child everyone always wants to know what you want to be when you grow up. The truth is that I am 30 years old and still don’t have any idea what I want to be when I grow up, but I played their game and I played it well for awhile when I was young and therefore their expectations weren’t high. As far as they knew I had aspirations and dreams just like any other child, but I was just pulling rabbits from a hat to make them all gasp with glee. I discovered early that if my talents appealed to one or two of my teachers, they could shield me from the scrutiny of the others. I found the library, and the music room, anything to keep me inside at recess. There were still ripples, but for every teacher that took my book away in class, there was another teacher to go straight in and get it back for me.

The problems started when, as I got older, people started expecting me to follow through on these dreams. When everyone else was executing their carefully laid out plans, developing their career, I was struggling to keep my head above water in a world where I was increasingly expected to mingle with my peers on a social basis. I no longer had teachers to shield me, and it was no longer acceptable to focus on one activity to the exclusion of all else. I no longer had the angsty teenager excuse for hiding out in my bedroom all the time, and yet I was feeling an increasing need to be alone and do the things I wanted to do. I was slowly becoming aware that there was no place for me in mainstream society.

The thing that struck me to the core was that this revelation gave me a measure of peace. I didn’t care if I didn’t fit into mainstream society; I’d never understood the motives behind it anyway. Get a good job, make lots of money, buy a big house, a cottage on the lake, and a fancy car all so that you can keep working long enough hours that you never have time to enjoy any of it anyway. I don’t need any of those things to be happy. Save lots of money for your retirement just in case you make it there and there is no more social security to support you. When I get too old to take care of myself I might just wander off into the woods. Don’t bother coming to find me.

None of these things concern me, and that’s a hard concept for most people to understand. Some consider it immature and irresponsible and I agree that my absolute refusal to plan for the future can come across as na├»ve on the surface, but I believe that it is based firmly in reality.
I don’t need any of those things to be happy, I can be happy with them and just as happy without them. The material possessions are peripheral to my actual needs.

This doesn’t mean I don’t sometimes work towards a goal, it just means that my plans aren’t concrete. They don’t represent a bigger picture of what my life will be like in the future. I can succeed or fail on any step at any time and it doesn’t really have that much of an impact on things as a whole, because as a whole all I want is happiness.

Accepting Asperger's into my life.

Well, I’ve come to terms with a lot of things that are different about me in my lifetime. This is probably the biggest, and yet at the same time it’s the smallest given that I have already come to terms with most everything it encompasses. They say the Devil is in the details, but I’m not entirely convinced. The details are all I have when the bigger picture is so horribly overwhelming I can’t even begin to sort it out. So, I broke it down into small manageable chunks, and in doing this I found that the majority of this bigger puzzle was already completed. Aspergers is naught but a word in the face of what I have become in 30 years of living with it, and I understand the purpose of words. In the right hands they lead to understanding, and greater understanding in my life is exactly what I have always needed.

I have made an appointment with my GP to get either a diagnosis or a referral to a specialist. Cherry would like me to go to a Doctor in Rochester but I just don’t think we can afford it right now and its important to me to get this done so I can stop feeling like I am in limbo. It will be easier for me to approach my family with this if I have that professional diagnosis behind me. Unfortunately I don’t spend enough time around them for them to know anything about me. My inner circle have all been told, done some reading and research, and agree whole heartedly that I have all the symptoms. I’m nervous about going to my GP; he has some Doctor/Patient confidentiality issues. I guess that might actually work in my favor this time. He sees my whole extended family and is a bit of a chatterbox in the exam room. Maybe coming from him they might get it. Emphasis on might.

It’s been a bit of a rough week, but I think I’ve finally gotten it through this thick skull of mine that no one is going to turn tail and run just because one word got added to their dictionary. In fact, it has already created a greater degree of understanding between me and most everyone I’ve told. Aspergers is a reason not an excuse and coming to this awareness this late in my life has provided me with a chance to grow up and find the ways to fit in when I need to. By this age those that I really care about are those who have always accepted me for who I was regardless of why I am that way. What social skills I don’t have by instinct I can sort of make up for with experience. I will never be Neurotypical. I will never understand how someone who is NT experiences the world, and I will never be able to explain with any clarity the way I experience it, but the understanding that those differences aren’t in my imagination is all that I need at this point.

The proverbial light bulb

*takes a deep breath*

It starts here, or at least it feels like it does. I’m calling this the proverbial light bulb because that’s what happening in my life. Somehow it all makes a lot more sense, and yet I still can’t seem to come to terms with it all. There is a part of me that wants to scream, that feels that being defined in this way will somehow discredit all of the unique quirks and eccentricities that make me who I am. I’ve never felt the need for a cure, I’ve never wanted to be anyone other than who I am, and although I know that having Aspergers is a part of me, not the sum of my whole, it almost feels too comfortable to fit in a category that way. It’s never happened before.

I’m angry, I cant help but think that this was overlooked, that I was overlooked. I’m grieving for the years I have lost to trying to be normal when that was never going to happen. I’m elated to have found some of the answers that I have looked for for so long, but I’m confused by the volume of information that I have to work my way through, and where I fit into the spectrum. I can’t help but pick apart my life to find the pieces to the puzzle, but I find it overwhelming that so many of them fit. The “Neurotypical” box has very few pieces left.

All my life I’ve been different. Sure, everyone is different, but this is on a much deeper level. There have always been things I couldn’t do that most could accomplish with ease; I’ve always seen things differently. I just don’t feel things the same way as others do and without a point of comparison I have no way to describe the way I am feeling or how it differs.

I’ve never understood jealousy or grief as explained to me, my emotions at the time people tell me I should be experiencing them do not match the description provided by others feeling the same way. I have a difficult time in situations where I am expected to “feel for” someone, and although I can sympathize by rote it tends to come across as cold, it is after all scripted in my head based on the situation and what others around me are saying. Its hard to express feeling in a sentiment when you aren’t feeling anything at all.

Apart from the few people I form intense connections with I have difficulty socializing. I don’t understand the apparent enjoyment others get from this activity. Its not that I don’t want to feel this way, I simply don’t, and that makes the experience stressful. I spend the entire time worrying about what I can say, and can’t say, and how far away I should stand, and if I should shake hands, and how long its ok to talk. I’m confused easily by groups of people, especially those with an expectation that I will take part and contribute to the banter.

This doesn’t mean that I am disabled in any way it simply means that I do actually view the world differently, just as I have always suspected. I don’t experience things the same way as someone who is Neurotypical would, I simply don’t “feel” the same things.

There is a disappointing lack of information available to adults with Aspergers. It’s getting better, but the focus is still on diagnosing children with the syndrome, and less care is being taken to explain the way an adult would present the symptoms. The fact of the matter is that adults with Aspergers are highly overlooked in the medical community due to their high functionality and lack of extreme symptoms. After 30 years I was content to stand back and let the world affix the labels they wanted, knowing they would never understand and I would never be able to explain it to them. Despite the years of trying to be “normal”, I really had no desire to be that way. I was simply forcing myself into the mold, trying to make ends meet so that I would know how to relate to everyone else around me. As it dawned on me that no matter how hard I tried there was no way to change who I was, that I was definitely working at a disadvantage in social situations that no amount of study about psychology and social clues was going to fix, I retreated. I started resisting the urge to reach out and touch people because I knew that eventually I would let them down, they would see me as cold hearted no matter how much I wanted to connect, and my inability to make small talk or initiate any kind of social activity would drive them away thinking that I didn’t want a connection at all. I’m good at making friends, but I suck at keeping them.

That’s been the hardest part of my life I think, that people assume that because I cant I don’t want to. They take it personally when I don’t just drop in to say hi, or I can’t empathize when they need a shoulder to cry on. I can give advice, but I can’t empathize, and that’s a harsh reality for some people to face. I correct people when they are wrong and they assume I think they are stupid, when in fact I just sometimes get so fixated on the details that I cant see the bigger picture. I can’t do drop ins, people have to call before they come by. I often use the wrong tone of voice, facial expression, or body language when I am communicating giving the impression that I am upset or hostile and by the time I realize it I have no idea how to fix it. I tend to be so honest I can offend people without realizing it, I’m not the girl to ask if your ass looks fat in those jeans if you want platitudes. Most people expect more from their friends.

Even masochism is suspect in my eyes right now. I was never fully comfortable with the textbook definition of this word as it applies to me. It’s another example of standing back and letting the world choose how it wants to see me, it was a word that people understood and accepted. It saved me from having to explain the way I felt about it. This doesn’t change the way I see myself, but it may change the way the world sees me drastically. Pain at very mild levels gives me some element of sexual satisfaction, but leaves me totally unsatisfied. Pain at the level Cherry and I play gives me no sexual satisfaction at all, yet leaves me with a temporary satisfaction I can get no other way. See, here I am trying to explain it. I can’t. There is no point of reference. Needless to say, many people with Aspergers often enjoy pain and discomfort, both emotional and physical, because we seek those intense feelings what we don’t experience in thier natural setting.

This is by no means all the information I have, or all the clues that have come together. This is just me trying to get this all straight in my head. I’m working on making an appointment with a psychologist and by then I hope I will have this all in order to present to him on paper. This just fits, I feel like these people are in my head, right down to the fact that I walk on my tiptoes. I’m actually quite frightened.

This is just the beginning.