Sometimes, I will be able to fix things up by asking Tom to redefine or elaborate a specific point or I might choose to ignore an entire passage or two deciding it is just too convoluted to sort out, or I might come to the conclusion that my husband himself made a comment that was just plain rude, wrong or misguided. When I have an inkling the crux of my confusion and my inability to follow his thoughts is more influenced by my AS than anything else, I will directly say to Tom — I think my AS is confusing me. Please start over and tell me again what you are trying to tell me. This confession of mine has never failed to help both of us stop the arguing immediately, whereupon Tom can begin his point all over again, but this time with a great deal more care and precision behind his words. However, if I come to believe one of the non-AS variables is at play, I will usually do what my friends are able to do, state my argument and go on my way. More often than not, I tend to believe it is my AS that is interfering with the moment.
Most of the time Tom can restructure his conversations until I can decode what he is telling me. On other occasions there is nothing he can do to forestall my rigid thinking — nothing. Typically I am inflexible in my understanding of words that convey time or order or specific action. For instance, if Tom told me he was going to leave his office in a few minutes, run by the bank, stop by the store and then pick me up from the library, I would expect him to do exactly those things, in exactly that order, in exactly that time frame. It would not do at all if he changed his mind and left the office an hour later than he had planned, ran by the bank, came to pick me up and then suggested we run by the store. Something as seemingly innocuous as this will send me over the wall each and every time. I would have been terribly shaken because he did not leave the office when he told me he would, and also because his actions did not follow the sequential order he told me he would follow. Even if I had been enjoying my time in the library and were anxious to get to the store myself, I would still be unable to tolerate this breach in time and sequence. These episodes become lost in my perseverations. Times when I cannot, despite all attempts toward the opposite, let go of a train of thought. It is as if my mind has trapped the contents of everything that has been said or shown me, far beyond the walls of a house of mirrors. When this happens, my husband has learned that the only thing he can do is ride time until I can settle my dizzying thoughts onto something untouched by my panic and my confusion.
I do not feel my rigid thinking would be a big impairment to my ability to communicate if I did, in fact, move on completely. However, I rarely do. I keep breaks like this — changes in routine, misused words, alterations in sequence, times when I have been utterly confused and then angered — in a file that I access and reexamine in total each time I face a new bout with my rigid thinking. Unfortunately, each time I begin perseverations on one particular issue, I am very likely to recant a litany of similar instances and sets of circumstances, even from as far back as a decade or more ago. Thankfully, Tom has a strong threshold for my perseverations and my rigid thinking patterns. I suppose he has finally come to accept that this chink in my character is as much a part of me as are my blue eyes.
As odd as it might sound, one of the kindest things my husband ever said to me was, «You are so weird». Not a typical endearment, but nonetheless, it brought me joy because in those few words I found a sky filled with freedom. From that comment alone, I knew that even though Tom recognized my differences, he was still interested in being with me. This gave me the go ahead to confess, if you will, every single sensory issue that exasperated, overran and confused me. It felt so liberating to tell Tom my fingers felt like they were being torn apart when he interlocked his fingers with mine — that I felt bugs under my skin when he touched me lightly — that my mouth watered and my nose burned and my stomach turned when he wore certain kinds of cologne — or that when he came too near me, it took everything in me to keep from shoving him aside.
He took each admission in stride, simply nodding as I explained what I was feeling when assaulted by certain sensations. Never once did he complain when I exclaimed I had to leave a ball game because the crowd’s constant commotion and moving about made me feel lightheaded and disoriented. Not ever did he tell me he was angry or hurt because I refused to sit too closely to him or hug him often enough or display outward affection like other couples do. At no time did he appear embarrassed or chagrined in response to my social blunders. Still, I worry that I am in some way leading him to feel he is missing something in me, a certain tenderness or smoothness, a softness or a kindness… a special something that only he can define, but that I cannot discern for myself or exhibit on my own. As a sort of insurance policy, as protection from the fact that I might not be as affectionate or pliable as he might like, I work at asking him to tell me when and if he needs more from me than he is getting from me. But because I suspect he will never burden me with the notion that I am disappointing him, I have taken it upon myself to try something that so far has managed to help me make small changes in my behavior. Like other people make lists to remind themselves to pick up milk or get the mail, I make lists that tell me how to act. On my list are things like — hold Tom’s hand for five minutes every day; squint eyes when in an overwhelming crowd; say «Excuse me» instead of «I have to get out of here now!»; count to five before replying; hug Tom three times today. When I review my list, I remember how I need to act.
I am convinced I benefit from this strategy, despite its simplicity. It seems to stick things in my memory — rules and skills and planned behaviors that I would never contemplate or remember to do without prodding, but I am routinely surprised that I need to rely on something so contrived. I have an excellent memory for most things and I am tempted to think I should remember to do something the moment I tell myself to do it. I suppose this discrepancy occurs because there is a subtle difference of content at play here. The memories I easily recall are all based on facts I am interested in or situational events that happened in my past. For some reason, I cannot seem to recall how to act as easily as I can recall how I did act. It is as if when I look backwards I see a photo album filled with vivid images and shapes, but when I try to look forward I cannot call to mind one reliable picture to guide me along. Instead, I spend a great deal of time imagining how things should happen, rehearsing possible scenarios over and over, contriving lines I might say, and directing how others should act and how I would react to their reactions. I will play this game until I feel I have exhausted every possible scenario, and then I will typically obsess over which scene is most likely to happen in real life. But, of course, things rarely turn out exactly as I had rehearsed and so I suppose it will never be possible for me to always know how to act. The human saga is just not reliable enough for me to predict.
Social situations are not the only things I find unreliable, and hence, untrustworthy and uncomfortable. My sense of visual perception often plays tricks on me, making it difficult for me to do ordinary tasks like picking an object from a background, seeing discrete differences among similar objects, or judging if things are close or far in proximity to where I am. Generally speaking, I know I should not rely on my own visual perception, but practically speaking, it is sometimes impossible to rely on anyone else. It is embarrassing to admit to people, strangers especially, that I am disoriented, that I cannot pick my car out from others in a crowded parking lot, that I cannot find my way out of a mall or down a series of hallways in an office building, or that I cannot even easily find my way home in my hometown.
When I know I am going to be in a situation that might render me helpless, I try as best I can to prepare solutions to every problem I might face. For example, I might ask my husband to draw me a very elaborated map pointing me where I need to go with both written and visual cues to assist me. Then we go over the directions verbally until he feels certain I will not lose my way. Finally he hands me the portable cell phone with firm instructions to call him the moment I get lost, kind of an inevitable conclusion for me. I prepare
, too, for what will happen once I do find my way to my destination. I try to park my car next to a big visual landmark, something I can lock in my memory for safekeeping until I need it to direct me to my car. I try also to avoid big malls, opting instead for small, self-contained stores that sell everything I need under one roof. I will also talk to myself as I am navigating my way through buildings or down streets, reminding myself to calm down, make mental notes of what I am seeing, have confidence and keep in mind I can always stop and call home for help.
I never feel silly or stupid calling home for help. If I did, I would never do it. I feel safe knowing I am guided by my family’s concern and their capable abilities. I feel less anxious knowing they are in my backfield, especially when I come to the terrible realization that I am hopelessly lost. I hate getting lost. I hate seeing the world as a distorted nightmare made up of secret passageways, false exits and trap doors. I overreact with panic. Beads of sweat pale my face, the back of my neck and the palms of my fingers feel clammy and numb, a fast pulse pushes my blood through my veins, my shoulders tense, my mouth waters and my stomach pumps acid to the back of my throat. Yes, it is a natural response to fear; yes, it is a natural response to anxiety, but it is also something more to me. My panic attacks are often very real warning signs, very real unspoken voices that shout to my sensibilities — Be careful, look around and take note of the surroundings, for you are now in real, tangible trouble.
I recall one time when Tom and I were in San Francisco on a business trip. His days were filled with work and mine were completely free. After my first day in the hotel room, I decided to take our rental car to a teddy bear factory in hopes of designing my daughters a homemade teddy. I walked into the room where Tom was conducting business, completely interrupting his work, and blurted out that I needed the keys to the car. I remember him looking as if someone had just put a bright light in his eyes, so surprised and concerned was he by both my behavior and my request. Having been caught totally off-guard, he gave me the keys and just sat there unable to speak. As soon as he did, I noticed I had become the center of attention, and quickly concluded I had stepped on yet another social morality. I could not have gotten out of that room fast enough, so embarrassed was I. I grabbed the keys and ran to the garage where our car was parked, finally found it after much delay, and set out toward the factory with only the hotel city map to guide me.
Within five minutes, I knew I had made a dreadful mistake. I compared the street signs I was passing to those listed on the map and found no matches. I decided to stop at a gas station and ask for directions on how to return to my hotel, thankful its address was printed on the map I crossed traffic to the first place I found and got out of the car to do just that. Within moments a homeless man ran to me, threw himself at me and asked me for money. All at once, I was both frightened for the man and because of him. My heart broke for his predicament, but my body shook because of mine. I was not certain what he or any of the other people I suddenly noticed standing around me would do or want of me, yet somehow I managed to politely tell him the truth — that I did not have any cash. Growing ever more confused, I turned to see the gas station attendant was safely locked behind a set of steel bars. Looking around some more, I was able to determine that I had wandered into a part of town that would not have been considered safe under any circumstances. I stood there paralyzed with the fear that comes when I am lost, the fear that tells me when my safety is in jeopardy. Not knowing where to go from here, I backed away from the onlooking crowd and began to fumble with my car keys. The more I fumbled, the more confused I became. In my confusion, I failed to notice that an extremely large man was standing near me. I have no idea where he came from or how he came to be by my side without my realizing it, but the moment I did see him, I knew he meant me no harm. To begin with, he looked as out of place to the area as I did. He was very well dressed and driving an expensive car. His voice was clear and calming and articulate. He smiled and quietly asked me if I could use some help. Though he did not invade my private space, he was close enough to me to invade the space of the street people who were making their way to me, making it clear by his presence that they needed to move on and away from me. Like a wave that was beginning to recede, I found my pulse return to normal. I rambled on about being lost and frustrated and how sad it was for the street people to live in such deplorable conditions and on and on and on. I knew my words were coming out on top of each other and I knew my conversation was drawing attention from my main problem, but still I rambled. The man listened intently until I found the wherewithal to close my mouth and focus my mind on the reality of my situation. I was lost and had no idea how to find my way home. Very softly, the man told me how to return to the hotel by using specific landmarks and cross streets. He then helped me to my car, shut my door and stood by me until I was safely on my way. Of course, I never saw him again, except in the dream I still have that takes me back to that time and place; the dream that forces me to accept my perceptual disability for what it is — a disability that can lead me beyond my limits.
It took me over an hour to find my way back to the hotel, but I did get home safely. A frenzied and frantically worried Tom met me in our room and repeatedly told me I could never, ever, do that again. I promised him I would never go far without him in a strange place again. And I meant it.
Slowly, at a snail’s pace, I am learning to question my actions before I make them. This does not mean I will not continue to make mistakes in judgement, even mistakes that bring me precariously close to danger. What it means is that I am progressing to the understanding that it is in my best interest to use the faith I have in Tom as my insurance policy. In other words, I am learning to ask him if it is a wise decision for me to jog in an unfamiliar park, or ride my bike alone through any given area, or take a short drive to a city I may or may not be familiar with. I know to ask him about the safety and wisdom behind any action that moves me beyond my routine. Like a seeing eye dog, he leads me to safety each time I let him.
After my parents had done all they could to push me along, Tom came just in time to drag me, sometimes screaming and kicking, to a place where I could find real comfort. With Tom’s help I have been able to move along the autistic spectrum from the childhood I can barely believe was mine to the relative ordinary I find these days. And as a testimony to his goodness for me, he has never given me more than a nod or a smile to tell me how I am doing. He keeps me safe. He reins me in. He lets me know if I am wandering too far in my thoughts or carrying on too long with my dialogue. I can look at him and see from his expression how my conversation is going and how my audience is taking me. And never do I come to feel he is acting possessively or egotistically or because he is annoyed or upset with me. Even when I only have a slight grip on the reality of his influence over me, I can tell he is trying to teach me and guide me, not keep himself from embarrassment or myself from shame. Because I always knew he was a very confident man who let no one’s perception of him tie him down, I knew, too, that he would never let how others saw me, affect him, or us, in any way.
He never missed a beat when he discovered I was different. He never discusses it unless I bring it up. He never alludes to it during my long-winded monologues. He never uses it as a sword to kill my enthusiasm for our relationship. And because he never uses who I am against me, I came to trust him.
Trust. An illusive concept, one so dependent on the ability to generalize, so tied to an ability to read the subtle nature of the human condition — no wonder it so often falls beyond the AS person’s world of discovery. But, when it is found, it becomes a life preserver, a means not toward an end, but an awakening. With someone I trust implicitly by my side, I know I will continue to grow and progress, to seek and to find.
Sometimes all I need to keep from falling over the edge is to look at Tom’s face. I am stunned by the looks of his face, not so much because he is an attractive man, but more because, in the structure of his face, I see so many of the visual elem
ents that appeal to me — linear lines, symmetry, straightness, perfect alignments. His face is firm and anchored and definite. It is chiseled and solidly cast. It is a visual respite for me. I am oddly calmed when I look at his features, so calmed that I find just seeing him puts me at ease, just as looking at a peaceful stream comforts others and a lullaby soothes a baby.
I often wonder what course my life would have taken if I had met Tom back when I was a teenager twisting and turning my way through youth. I am tempted to think he would have saved me from the turmoil I swirled in; tempted, not convinced. I think it was best we met later on in life, because it took me years of self-study to recognize who I was and how I worked and what I needed to fix me up. Had Tom, or anyone else for that matter, caught me each time I fell, I worry that I would never have been able to figure out what made me tick. I needed to fall, scrape my knees, knot my heart, and try my very hardest before I could really see that I was more than simply a bit different. I needed to come face to face with all of my issues before I could admit I needed the support I now get from Tom. As I go on to lose more and more of my AS, I caution myself never to overburden him with my needs, to never fall in on him, to lean on him only when I am faced with those things that toss me in circles and make me take unusual turns. And as I continue to refine how and when Tom can help me, I try desperately hard to give him the kinds of things I can, things like loyalty and honesty and reliability and shared interests. Like bookends, we have learned to support each other when the stuff in the middle pushes us apart.
Pretending to be Normal Page 8
