Category Archives: Uncategorized

Going?

Since you asked, and at lunch it didn’t seem like you know, either.
I don’t know.

Do I think we should separate?
I don’t know.

Do I think you love me?
I don’t know.

Am I depressed?
Probably.

Do I think there is ANY reason to go on living?
I don’t know.

Does it feel like my heart is broken?
Absolutely.

Is there something you can do to help me with this?
I don’t know.

Am I seriously considering ending my life?
I don’t know.

Would I ever intentionally hurt you, or our children?
I don’t think so, not if I could help it.

What do I want?
I don’t know.

What do I need?
I don’t know.

Can I tell the difference between WANT and NEED?
I don’t know.

Wait, maybe…

I NEED to feel loved BY YOU…
…by someone?…
…by anyone?…
…nobody.

I NEED to feel like YOU WANT to be with me…
…like someone wants to be with me?…
…like ANYBODY wants to be with me?…
…nobody.

I NEED to feel like YOU care about me…
…like someone cares about me?…
…like ANYBODY cares about me?…
…nobody.

I’ve told you before how important it is to me to feel your touch… to hold your hand… to experience your love. Earlier today, we sat across from each other in a fast food restaurant, tuning out the world… saying things to each other but failing to communicate. You seemed distracted, like you couldn’t wait to be someplace else… like you’d rather be anyplace but right there… rather be with anyone other than me.

For more than a half-hour, there we sat. I struggled, and failed, yet again, to find my words… to tell you how much I love you… to tell you how scared I am of losing you… to tell you how meaningless my life feels without your love… without any love.

There we sat, each of us with our hands on the table… inches from each other… but no touch… no caress… no spark… no indication of love for me… no reason for hope… no recognition of pain… no acceptance of responsibility for causing hurt…

And then you said, “I guess we should go.”

I guess we should go…

Guess we should go…

We should go…

Should go…

Go…

So we did.

I shuffled out the door, and staggered quickly to my car, feeling like I was going to explode with grief. I sat, in the car, in the parking lot, sobbing so hard I thought I was going to die. Shaking so much I couldn’t see clearly.

And watched you drive past, slowly… but not like you cared.

You stopped at the corner, and I tried to watch for a glance… a turn of the head… something… anything… but it didn’t seem that you looked my way.

And then, you drove off.

You were going.

Going.

And still, there I sat. Sobbing. Convulsing. In agony. My only friend… my love… the only person I can really talk to… had gone. Gone and left me. Without saying “I love you.” Without grasping my hand. Without smiling. Without saying goodbye. Without love. For more than an hour, there I sat. Wondering… why? Why can’t I get the words out? Why do I get so upset about seemingly trivial things? Why?

And when I’d cried until I couldn’t cry any longer I thought to myself, I guess I should go…

I should go…

I’m going…

gone?

The Pinball Machine in my head

When I’m feeling depressed, which seems to be all the time recently, I am more impacted by the various stressors of my life. Stress at work. Stress at home. Stress in the community. Stress at church. Stress with our extended family. And then, the result of this greater impact is that these “routine” stressors lead me into a negative spiral, a condition where any small thing is apt to set off (or “trigger”) a “negative emotional response” within me that is far out of proportion to the often-trivial thing itself.

This post is my own initial effort at trying to describe and explain this process, not only for myself but also for my wife. As I’ve learned about my autism, perhaps the most painful part of my discovery has been the recognition of how much pain my behavior has caused for my wife. She is the only true “friend” that I have, and because of that, my wife is often the only person around me when I drop ALL of the things that I have been doing to “pass” in public or at work. When I drop all of those, AND I’m in a negative spiral that includes one or more of my “negative emotional response(s),” I can be rather difficult to get along with. And since my wife has been my only real friend for the past twenty years, she’s born the brunt of far too many of these “negative emotional responses.”

One thing I’ve learned over the past six months is that what I experience as a “negative emotional response” looks most like ANGER to an allistic person. This is important for me to recognize, because ANGER is usually NOT the thing that I’m feeling inside. Unfortunately, what I’m feeling inside can quickly turn into real anger because of how my own confused emotions are being interpreted by those around me. In other words, I may be experiencing FEAR, or RESENTMENT, or DISAPPOINTMENT, but my mind and my body (through my expression, the tone of my voice, and my physical movements) portray those things as something that LOOKS like ANGER to the allistic world. And then, when the world responds to me as if I am angry, it’s not a giant leap for me to become ACTUALLY angry. This transition from a negative emotion to actual anger is very much like adding fuel to the destructive fire that is raging out of control in my mind.

In trying to describe my own personal experience of emotion to my wife, one difference that surprised us both is that I almost always experience only one single emotion at a time, whereas (according to my wife) she experiences complex blends of multiple emotions simultaneously. Talk about confusing! I’m struggling to understand one emotion at a time, but allistic people seem to be able to “multitask” emotionally, ebbing and flowing, sliding from one subtle blend to another, whereas MY experience is much more like a simple “on / off” switch on the wall. When a situation is emotionally complex, there may be many different “on / off” switches for many different emotions in my mind, and those different switches may be turned on and off very quickly, but no matter how fast they go, I only experience one single emotion at any given point in time.

Pinball Machine image

Pinball Machine – from http://www.imageafter.com/

My experience is sort of like having a pinball game running in my head. Each of the “bumpers” or “targets” in the pinball game is a different pure emotion, and the ball ricocheting around the machine is my sequential experience of those emotions. Sometimes the ball moves slowly, deliberately, from a flipper to a bumper to a target. Ocasionally, when I’m in a negative spiral, the pinball gets stuck in a pattern where it’s bouncing furiously between three or four different emotional bumpers, until finally it bounces out and I’m left completely drained of emotional energy. As if that experience wasn’t frustrating enough, I’ve been working with my counselor to use my logic and reason to “dissect” whatever emotion I’m feeling, so that I can express that feeling in ways that interface effectively with the allistic world. The challenge for me is that this process of dissecting, exploring, and deciding on specific actions to convey this emotional respone is not quite as fast as the native emotional reaction that occurs more automatically from an allistic mind. And when the situation is complex – when the spiral is tightening, the pinball is bouncing faster than imaginable between different bumpers – that is when those small delays in emotional processing add up, and further complicate my problems. Where I might be one or two emotions behind during a routine situation, I may be six or eight steps behind in a complex one. And when I’m in the grips of a negative spiral, this processing lag is my worst nightmare. It is this lag that causes my emotional experience to be out-of-sync with the emotional experiences of my wife, which can have disasterous consequences for our relationship.

In some ways, having a diagnosis and working on the challenge of emotional experience with a counselor has actually made things WORSE for me! Why, you ask? Because I no longer have the option to just let the ball bounce around without trying to understand each of those bumpers. I can’t skip by even ONE of the emotions in the sequence without evaluating it logically, without considering possible actions to take. Before I knew about my emotional processing deficit, I didn’t know that I COULD do something different, so I just waited out the experience. Now that I know, my knowledge can sometimes be a curse, as I’ve painfully experienced several time in the past month.

I don’t yet have a clear way forward, a process for moving beyond this frustrating challenge. But what I do have is motivation. I can’t possibly express clearly or often or loudly enough the love that I have for my wife. The more I learn about myself, about my autistic differences, the more amazed I am that she has continued to love me throughout our marriage.

Photo of a red rose

Single Red Rose

Sweetheart, thank you so very much, for your patience, for your strength, and for your unconditional love.

Twenty-five years

Twenty-five years ago, at a New Year’s Eve party in a city halfway across the country, I danced with the most amazing woman I’ve ever met. She was full of life, fun to be with, had a great sense of humor, and truly seemed to want to be around me.

Twenty-five years later, that amazing woman is still full of life. She still has a great sense of humor. She is still so much fun to be with. Unfortunately for me, however, I honestly don’t feel like she still truly wants to be around me. And that’s my fault, because twenty-five years of taking her for granted, of not always showing her and telling her how much I love her every single day, of not being flexible in my own thoughts to accommodate her wants and needs, twenty five years have sown a bitterness in her that is a horrible legacy of how I’ve mistreated her. The frustration, anger, and pain that I am only now beginning to recognize in her, but that I’ve caused for her, make me very sad. I would give anything to take back the tremendous hurt that I’ve caused her over the quarter-century that we’ve spent as a couple. I am working hard at trying to understand myself better so that I can be a better partner to her over the next quarter-century.

Coming to terms with myself, with my own quirky emotional syntax, with the way that I process thoughts and feelings, has been a remarkably difficult journey for me. Dissecting a lifetime’s worth of experience in a few short months of effort at unraveling the defensive cocoon that I’ve enshrouded myself inside has not been as simple or as painless as I had hoped. Nor have I made as much true progress on this journey as I would like, but it is a journey that I have begun, and as we venture into this next year, that is what gives me hope for us… hope for a life together that is full of joy, happiness, trust, love, and wonderful times together.

So Allie, will you join me this year, in carefully digging out the many weeds that have grown in our relationship? Will you help me in tending the garden of our love that I’ve neglected so much over the past years? Will you continue to love me, to support me emotionally and physically through  the inevitable low spots on my personal journey as I work to deconstruct the facades that I’ve built my life upon?

I will do my best to honor and cherish you, to love you with all my heart and soul, in sickness and health, in good times and bad, in all the ways I can, for ever and ever. I will do my best to respect your wants and needs. I will try my best to be nurturing to the light in your soul, rather than doing things that hide that light or risk extinguishing it all together. Because that light is often the only light I see, and I can’t imagine going on without some light in my life.

Will you be my partner, my love, my best friend, for the next twenty-five years?

All my love,
AspieKent

This Life is So Confusing

Hello, to all fellow mixed marriages like ours, Allie here. That’s right…”mixed marriages”. An Aspie and an Allie. Together. Living side-by-side. Close quarters. Now, add two (probably) Aspie children to the pot and what do you get? Outnumbered!

I could use a few survival hints if anyone out there has one. “What’s up?”, you may ask. Well, here goes, a couple of things I’d like suggestions on: 1) mood swings; 2) telling resentment from jealousy from stress from plain old anger; 3) your image to the outside world how important is it over who you really are. I’m sure I have more but let’s start with those three.

1) mood swings:  Need I say  more?  I think everything is going along just fine and WHAM! I get that tight face, that short response, that cold silence. What in the world happened?

2) telling emotions apart:  So is that anger that I did something you didn’t want me to do? Resentment that I enjoyed myself doing something you hate to do? Jealousy that I might be enjoying myself out with others rather than staying home? Stress from holidays, work, me going out in not so ideal weather conditions? Or just plain old anger that you didn’t get what you wanted?

3) image:  So do you really want me to be me? Or do you want me to be your version of me? If I’m not suppose to change who I am because you love me, then why am I changing who I am because I love you?

Maybe I’m just a little overwhelmed right now. I am more than willing to “stand behind” my Aspie partner, but is it improbable to think that my Aspie partner will “stand behind” me?

Should I ever expect any emotional support? Should I ever expect any physical help?

Someone drop me a life preserver, I feel like I might need one right about now.

I am autistic. This is ME!

This post was created for the “This is Autism” Flashblog, located at  http://thisisautismflashblog.blogspot.com

As background, last Monday, “Autism Speaks” told the world that autism is:
. . . living in despair
. . . fear of the future
. . .exhausted, broken parents
. . . lost, helpless, burdensome children
. . .  a national emergency

Since I wouldn’t normally describe myself in any of those ways, I’m joining lots of other autistic bloggers to write about my own autistic experience… I am autistic. That is the diagnosis that I received this past summer, at 44 years old, and that I have been processing since. But when examined closely, “autistic” is really just a label that is used to describe a subset of people who are different from “the norm” in how we sense, experience, interact with, and think about the world in which we ALL live, autistic AND allistic.

Autism is the label that is applied externally to people who experience some of a constellation of unique ways of being, sensing, thinking about, and interacting with our world. When I look inward, at myself (something I probably do more than many of my allistic acquaintances) I do not see myself as autistic, any more than I see myself as tall, or fair-skinned, or red-headed, or any one of a thousand other ways that I might be described by others. No, I simply see myself as… well, as ME!

I’ve enjoyed reading several other posts today from other autistic bloggers who have used a style in which a brief example is given, followed by the phrase “this is autism,” or “this is MY autism.” So, following the lead of the many talented autistic bloggers who have gone before me, this is ME!

I am blessed to have excellent language skills. Too blessed. When I was three years old, I corrected my grandmother’s grammar… at the dinner table… in a crowded restaurant… loudly…

This is ME, and maybe MY autism.

I care for animals, and plants, and things, and people in roughly equal measure. If you are the snake I saved from a glue-trap, or the turtle I cleaned of pollutants, then you may feel grateful. But if you’re the spouse that I forgot to thank, or the coworker who’s birthday I ignored, then you could feel resentful or angry. I don’t think about your reaction any more than I think about the reaction of the turtle or snake or piece of furniture that I rescue from the rubbish bin.

This is ME, and maybe MY autism.

I count everything. Twice. And then again. The tiles on the floor at the doctor’s office. The panes in the windows at church. The steps in this flight of stairs. The number of seats in the row at the theater. The lugnuts on each wheel of the truck going past me. So if I’m not listening to you, it may be due to being lost in a sea of numbers. They are comforting to me, and the routine of saying them inside my head helps calm me down.

This is ME, and maybe MY autism.

I need to know things. No, I mean KNOW things. I am not comfortable “assuming” something is true (or false) because of a glance, or innuendo, or humorous comment. I need it to be clear to me, not “maybe,” not “might be,” not “perhaps,” but yes or no. So please don’t be offended when I ask you to clarify something you just said… in MY mind, it must not have been clear!

This is ME, and maybe MY autism.

I like many different foods, but have to be careful in eating some of them too quickly or without plenty of liquid accompaniment. If I’m too rushed, those foods “stick” in my esophagus, which makes it impossible to swallow. That is a frightening feeling!

This is ME, and probably NOT my autism, but perhaps my eosinophillic esophagitis.

I love to play games. QUIET games, where only one person talks at a time, where order and logic are benefits. Trivia games are a favorite, so we’ve been collecting them. There are currently twenty-eight different versions of “Trivial Pursuit” on a rolling bookshelf in our livingroom.

This is ME, and maybe MY autism.

Emotions confuse me. When a person says one thing, but does something else, I don’t understand. I’m not very good at reading facial expressions. I have a hard time telling “angry” from “tired” or “content.” And I have an even HARDER time telling them apart when I’m the one who is experiencing those emotions. They sort of all feel really bad, or really good, or kind of blah.

This is ME, and maybe MY autism.

I can’t stand the feeling of some textures. Do you know how most people seem to react when fingernails drag on a chalkboard? Yes? Well, that sound is how velour fabric feels to me. Not very good!

This is ME, and maybe MY autism.

I find it annoying when people don’t do what they’re supposed to do. When they don’t follow rules, pay attention to road signs, adhere to their self-established schedule. When a box labeled “24 pieces” has only 23. Or when it has 25. When my lunch plate at the local Chinese restaurant looks NOTHING like the picture in the menu from which I ordered it.

This is ME, and maybe MY autism.

I like to talk about the things I like. Some things which might seem unusual to people who don’t know much about them. And when I get started talking, it is easy for me to lose track of time. And just. keep. talking. Regardless of whether the target of my talk is still paying attention, or not. Only if they begin snoring loudly might I finally pick up on the hint.

This is ME, and maybe MY autism.

When I do a task, I really NEED it to be done right. Whatever “right” means to me, at the time. So if you ask me to “straighten up” the network closet, don’t be surprised when, a week later, I’ve re-run all the cables neatly into rows, punched them down into tidy patch panels, accurately labeled them all, created a map and index of them, and published a laminated user guide to all the things in the closet. Also, don’t be surprised that there is still some clutter in there, because I was so intently focused on the network parts, that I didn’t even SEE that other stuff.

This is ME, and maybe MY autism.

So you see, I am a unique person… someone who has good times and bad, someone who is a father, a husband, an employee, a helper, a competitor, but who is also at times a loner, an outcast, an oddball, unlikeable, annoying. Just like everyone else in the world that we all share.

This is ME, my autistic self.

Autistics Speaking Day 2013 – Being Myself

For perhaps the first time in over forty years, I am being myself. I am taking a break. Pausing for a few hours, and just being me. Setting aside the exhausting work of trying to be the person that my allistic acquaintances expect me to be.

You see, I’m autistic.

I’m successful in my work, I’m the father of two wonderful children, and I am autistic.

I’ve spent most of my life trying to fit in, but until recently, I didn’t really understand why I’m
different. I’ve struggled to understand what people mean when they say things that don’t make sense to me, and I’ve agonized about trivial misunderstandings for days. I’ve gone to unimaginable extremes to avoid conflict, because in conflict I fear that my differentness will become a weapon to be used against me. I’ve thought and thought about things that many people would probably consider trivial, yet thought nothing about things that they seem to worry about a great deal.

And this past summer, I finally learned why.

Because I am autistic. My mind works differently.

In order to succeed, I’ve spent most of my life subconsciously compensating for the ways that my mind works differently. I’ve tried to behave like the many non-autistic people with whom I must interact. Ignoring the odd looks and blank stares at my failed jokes. Counting everything I see, absorbing patterns, getting lost in details. Struggling with words and feelings, experiencing powerful emotions but not knowing how to describe them or react the way allistic people do.

And yet, most people I know would not recognize me as an autistic person.

Eccentric, weird, aloof, or perhaps even reclusive. But not autistic.

Because I have unknowingly worked very hard to hide behind a caricature of myself. An allistic version of me. A facade. A fake.

The real me, the autistic me, has been here all along. And it feels good to be able to drop the charade, to just be myself.

Until I have to leave the house again, when I will put on my mask, slip back into character, and try to blend in with the alien expectations of this strange world that is my home.

For the time being, I am myself. I am relaxed, and comfortable, and enjoying some quiet time with my spouse. And I am me, not the character I often play, or the person that society expects me to be, but my happy, eccentric, autistic self. And that feels good.

Happy Autistics Speaking Day!

Unexpected Consequences of (Irrational) Anxiety

Before my diagnosis of autism, my wife sometimes told me that she felt I was trying to be “too controlling”… that she thought I needed to be in control of things at home. While her (unsurprising) reaction was frustration, I think that my reaction usually caught her off-guard.

We’ve probably all known people who actually ARE very controlling. Controlling people may limit any opportunities their spouse or partner has to socialize, or may not allow their partner to make any decisions. They may restrict spending, or set unreasonable expectations. In some cases, exercising control can lead to other forms of abuse, emotional or physical.

So when my wife “accused” me of being controlling, confusion and anger were NOT the reactions she expected from me. I was confused because I was not, consciously, TRYING to be controlling. Far from it, yet that was how my behavior was perceived by her allistic mind. And when I get confused, that often looks a lot like anger from the outside. What was I doing that she thought meant I was trying to control her?

I was trying to know her schedule. I was encouraging her to have a routine. I was asking her not to go. Hmmm… those do sound a bit controlling, don’t they? At first blush, they certainly do, even to my Aspie mind! But dig a little deeper, and maybe not so much…

Knowing her schedule was important to me, because having that information would help me not make false assumptions. It would mean that I wouldn’t worry about her unnecessarily. I wouldn’t wonder where she was at any given time. I wouldn’t hear about a car crash and assume that she’d been involved. Knowing her schedule would help me know that she was safe. And that’s important, because I care for her very, very much.

I wanted her to have a routine, because I was more comfortable with routine, and I assumed that everybody felt the same way I did. I wanted her to be comfortable, to be able to relax, and for me, that works best if I have a routine.

And yes, there were times that I asked her not to go. Not to go to a party, or out with her friends. I asked her not to go, because I wanted to be with her. I didn’t consider that my request would mean she might not get a chance to enjoy herself, I just wanted us to be together, and since I absolutely DREAD going to noisy places that are full of people I don’t know who might want to, god forbid, talk to me, I asked her not to go.

Since my diagnosis, I’ve learned that in spite of the unique ways that I experience emotion, I DO care very deeply for my wife, and I also know that she loves me very much. Yet I am still challenged to believe that she will stay with me, that she wants to stay with me, in part because I don’t have much self-confidence – particularly when it comes to relationships. This is where the “irrational” part of my anxiety comes in. Our relationship has lasted more than a quarter of a century. We’ve been married for more than HALF of my entire life. There has never been any realistic indication that she might leave me, nor any logical reason for her to want to (in spite of our few communication challenges). Yet I still worry that she won’t come home from a women’s group meeting, or that she’ll pack up the kids and move back to her parents’ home while I’m at work one day. I’ve learned that this is a part of Asperger’s syndrome that I’d never heard of before my diagnosis – a situational distortion that I think is best described as “catastrophizing” – the act of taking “assuming the worst” to a whole new level.

Why did my anxiety come across as a need for control? Because in our society, we often equate information, particularly personal information, with control, and what I was seeking was information. More information than most people want or need about their significant other. Detailed information. Specifics. Because without that information, my mind would wander down some dark alley, and create some fantastical myth about aliens abducting her, or a movie star sweeping her off her feet. With not enough information to conclusively (to my Aspie mind) refute the myth, I would add details to it, making it progressively more sinister, and more painful, and – unfortunately – more real to me.

I’ve been working on a practice from the Social Thinking model called STOPP, whereby I consciously evaluate the things that trigger my mind to begin weaving one of these myths, and then use logic to refute that trigger before I let the story even build up enough steam to leave the station. When I’m successful, I can often look back (with humor) at how I might’ve previously ended up in a meltdown or shutdown because of the lack of information from a misunderstanding or miscommunication. I haven’t been successful all the time, but certainly successful with enough frequency that I will continue working with this technique.

In addition to my work around catastrophizing, my wife has made some important and helpful changes since my diagnosis. Now that she understands that my need for information is not about control, but rather is my quirky Aspie way of caring about her, she has gotten much better about keeping her calendar accurate and up-to-date. Even though she is spontaneous at heart, she has been willing to establish some routines. And most importantly to me, when I’ve asked her not to go, we’ve been able to talk about why and often find a compromise that works for both of us.

I still sometimes struggle with anxiety, and sometimes I still worry about my wife abandoning me. I probably always will, because that’s just how my mind works. But now that I know more about how my mind works, I won’t be as likely to let my anxiety and fear of abandonment lead me down the spiral into a meltdown or shutdown.

AspieKent