Becoming One with Asperger's
A continuing column by Larry Moody
Shy, Tongue Tied or Brain Locked?
As a teen, I always thought I was shy, almost terminally shy. There were times when I wanted to talk to girls but I couldn't. I just couldn't seem to be able to get the words out. I knew what I wanted to say but I couldn't, I just couldn't! That pretty well defined shy in my mind at the time. Little did I know that something very different was taking place.
As father's go, I got lucky and have a good one. On the other hand, I was far from a perfect son. Particularly problematical were my ADD and memory deficits. I loved to build things to play with, and that involved using his tools while he was at work. All too often I would leave one or another of his tools out wherever I used it. In Florida where I grew up, leaving a tool outside almost always resulted in rust, a sure giveaway, even if I later remembered to put it back where it belonged. Punishing lectures were the norm. Sometimes I could not answer quickly enough when questioned after a thorough tongue lashing, or could not answer at all. A sure sign of defiance. Or so he thought. Little did either of us know that something very different was taking place.
About two years ago I was one of two panel presenters speaking about autism at an evening meeting of parents and teachers at a Burnsville area school. Having been asked a question about relationships, I was trying to relate something to do with my ex-wife and I, something that was very emotionally laden and I locked up mid-sentence! I could not speak! Nothing but gibberish came out before I went silent. I closed my eyes, went inside and self calmed for a few seconds. I opened my eyes and continued, but nothing came out except more gibberish. Again I went inside. When I came back after a few more seconds I was able to finish the statement I was trying to make. I then changed the subject and told the group that I felt I needed to explain what had just happened with me.
I call it Brain Lock. Someone else might call it a severe form of being tongue-tied. It makes no difference what you call it, it's still an uncomfortable feeling. With me it only happens when my emotions are highly charged, and not often even then. My brain is racing. I know precisely what I want to say, but my tongue will not cooperate. No matter how many times I repeat it in my mind, when I try to speak, it either doesn't come out at all, or it comes out as gibberish! "Gaa, uh, ugh??oeirt erqg ajkeg??" You get the point. It's as though the connection between my brain and my tongue is lost for a while. My brain simply disconnects. For most of my life I would fight this inside myself. And the more I fought to speak the worse it would get. Eventually I developed the technique of closing my eyes, going silent inside to self calm for a few seconds, and then returning. Usually I can then continue with what I was saying. If I can't continue, I simply repeat the process until I can.
Well, after my explanation, the program continued for about 20 more minutes and ended. As the parents and teachers were filing out of the rows of seats and heading for the door at the back of the room, one woman turned directly toward me instead. I have a significant deficit when it comes to appropriately interpreting facial expressions. So when I saw tears running down her cheeks I knew something was amiss, but I did not know what I had done. Do I stand, or do I run? Well I stood there. From bravado, or more likely a deer in headlights, I'm not sure which. She walked right up to me and wrapped her arms around me in a hug as I stood there silently, and she said: "Thank you, thank you" And she proceeded to tell me her story:
She has a six year old autistic son. Earlier, when I went into what I later explained as brain lock, she instantly recognized that that is what happens with her son occasionally. She said she had always thought he was being defiant and evasive, refusing to answer her, and she had punished him for it many times, but will never again. She thanked me once again, turned and left.
To have that kind of positive impact on the lives of even one parent and child makes all my efforts and occasional embarrassing goofs as a speaker worthwhile. That's why I speak out. That's why I do this and other things to help improve understanding and acceptance of us by the neurotypical population.
On Being Different
The beauty of this world is that we are all different in so many ways. The problems begin when you say, silently or aloud: “He/she is not like me!” The problems continue as you say, silently or aloud: “I want her/him to be like me!” …Because those of us on the spectrum cannot realistically be like you. Many problems will start to disappear when you come to the realization that: “Being different is okay.”
Everyone is different… Some of us more so than others. Each and every person on this earth is a unique individual. Those of us on the spectrum will always be different, or unique, in myriad ways. Some of us have been moderately successful at developing chameleon-like coping skills in adapting to live and work in the neurotypical world in order to get along with others. Some of us are openly defiant about adapting ourselves to the neurotypical dominated world. And some of us try our best, but are simply not able to modify our behaviors sufficiently to move about and live unnoticed in the neurotypical world.
Being different can be:
and on, and on…
…There is a true Genuineness in being accepting of the differences among us. One of the major factors in our enjoyment of life is acceptance and understanding.
For those of us on the spectrum, there is a dark underbelly to life: Ostracism and Bullying. It begins very early in life when our odd behaviors and lack of social understanding mark us as different. It seems to us that neurotypicals generally make our lives more difficult than is necessary, but peer children can be particularly cruel and brutal toward us. At best we are simply ignored. Then there are the jokes and innuendos whispered behind our backs. Go ahead, cut us down to make yourself feel better about your own shortcomings. And to top it off, getting shoved down in the dirt, slapped around, and occasionally struck with a fist… usually where it leaves few if any marks. If we speak up, we’re either accused of exaggerating and/or lying, or told it’s not nice to tattle on others. So we learn to keep our mouths shut and bear our pain in silence.
Somewhere in childhood I learned to not show any emotion at the bullying. I learned that the bullies wanted to upset my emotions, they wanted to make me cry out, they wanted a response. If they couldn’t get the response they sought, they usually moved on sooner. By the time I was in junior high, one of my teachers had nicknamed me “The Stoic” a nickname that stuck until I graduated HS. Because I was different, some of the teachers did not like me and they turned a blind eye, allowing the bullies free rein. Unable to defend myself, and knowing I could not depend on the teachers to defend me, I bore my shame in silence. I felt that the less attention I received from anyone, teachers included, the better. Speaking out almost always made life worse for me by generating a beating, or a worse beating, within a few days. I generally tried to stay hidden on the fringes, out of everyone’s way.
Little by little I began trying to perfect what I call “The Art of the Chameleon”. Learning cope and blend into the neurotypical world as best I could. …More on this in a future episode.
If there is to be any kind of happy ending to this month’s column, it’s the message: “Listen to your children.” Try to build a rapport such that they feel that they can bring any subject or complaint to you for discussion. And know that schools are doing much more now to minimize bullying.
Why am I involved with Autism Works?
In five words or less: “I am a bridge builder.” It’ll take considerably more words to explain what that phrase means, and some considerable help from a friend. And in typical Aspie fashion I’ll probably make what should be a short story into a long story.
I present myself as an example of one who is thriving even when many of those in the know predicted failure by me, or at best, survival. Even though success is not guaranteed, neither is failure guaranteed. I believe that almost all things are possible for those who really want them if they are really persistent. There are also those who inspired me, those who pushed me to become more than I thought I could be.
I am good at some things and poor at others. Somewhere along my career path I realized that by openly and cheerfully helping others learn to do their jobs better, that they would in turn help me in those areas where I needed help. Not everyone I helped, helped me, and not all the time -- but often enough.
Below is a poem written by a fraternity brother of mine (circa 1969) and published in Lambda Chi Alpha fraternity’s national newsletter. It struck me even then as meaningful, and I have ever since lived my life with it as one of my guiding principles.
The Bridge Builder
by William Allen Dromgoole
An old man going a lone highway
Came at the evening, cold and grey,
To a chasm, vast and deep and wide,
Through which was flowing a swollen tide.
The old man crossed in the twilight dim,
That swollen stream held no fears for him.
But he paused when safe on the other side
And built a bridge to span the tide.
"Old man," said a fellow pilgrim near,
"You’re wasting strength with building here.
Your journey ends with the ending day.
You never again must pass this way.
You’ve crossed this chasm deep and wide.
Why build this bridge at the even’ tide?"
The builder lifted his old grey head.
"Good friend, in the path I have come," he said,
"There followeth after me today
A youth, whose feet must pass this way.
This swollen stream that was naught for me,
To that fair-haired youth may a pitfall be.
He too must cross in the twilight dim.
Good friend, I am building the bridge for him."
Thank you Will, my brother, my friend. I am yours in ZAX.
I did not fit the mold of what is expected of most fraternity
brothers, and I was active for only one year. I was socially awkward then, and I am still socially awkward. I don’t let it stop me from interacting with others.
Life may conspire to place a chasm in front of me from time to time, but nothing stops me forever. I am now that grey haired old man, and I am still building bridges!
Red Dress, Blue Dress
What does the phrase “auditory distortion” mean to you? Everybody is different, every body is different. Auditory distortion is a common term in the autism community. Not all autistics exhibit it, and in those who do, it manifests in different ways and to different degrees. In me it manifests as a poor ability to discriminate among speakers and/or multiple sound sources and is strongly tied to my distractibility. In a busy restaurant I hear bits and pieces of all the conversations around me. In an auditorium I have difficulty listening to the speaker’s voice when someone nearby is talking to their neighbor. Compound this with the brain’s natural tendency to “bridge” gaps in a string of words with what it expects to “hear”, and trouble ensues.
For example: One night, while out at a restaurant with my now ex-wife, we were chatting about our day and she was telling me about her shopping trip and about the blue dress she had bought. Shortly after arriving home we walked into the bedroom where the spoils of her shopping trip were spread out on the bed.
After a brief look, I said “You told me you bought a red dress today!”
“No.” She replied, “I told you I bought a blue dress.”
“I distinctly remember you telling me you bought a red dress!”
“Larry, why would I tell you I bought a red dress? There it is. It’s BLUE! I bought it. I ought to know what I bought. What’s wrong with you?”
I was at a total loss for words. The dress was right there in front of me. It was blue, no doubt about that now. Yet still I distinctly remember her telling me it was red. I sincerely and honestly believed with all my heart that she told me it was red. Was I going crazy? What was happening?
Suddenly I recalled a passage in one of the books I read that spoke of the brain’s tendency to unconsciously bridge gaps in conversations with what it expected to hear, and my then current situation brought the meaning home….
Because of the noisy environment and multiple conversations around us in the restaurant, I was actively trying to listen to her. She happened to be wearing a red blouse that night, and when she said “…blue…” someone or some noise distracted me for an instant and I missed hearing her saying “blue”. Apparently I was looking at her and my brain filled the gap with “red” because of her red blouse. And I wasn’t even aware of what had occurred. My personal truth was that she told me she bought a red dress. Yet she undoubtedly told me she bought a blue dress. I knew she said red dress. And I knew I was wrong.
We had many previous arguments about things said or witnessed in the past where in the end we could only “agree to disagree.” … Was this “bridging” what had happened resulting in those many arguments? I’ll never know for certain, but it probably was.
A piece of me wants to say that I have regrets about many parts of my life. I think we all do. Another part wants to say I have no regrets because everything in my life has brought me to exactly where I am and who I am. I have had an incredible range of experiences over the course of my life, from blissful to looking death in the face, and everything in between. There is so much more out there to do and witness. I'm excited about the mystery of what's to come. I hope you are also.
Living with Asperger Syndrome
I am an adult with Asperger Syndrome, but AS is not my enemy, it is my friend. The truth is, when we are presented with life’s challenges, we are also presented with opportunities. My life with AS has in some respects been very difficult, and in other respects very easy. I have great ‘splinter skills’ – which means I’m exceptionally good at some things and equally poor at others. Legally blind in one eye since birth, and with tinnitus and partial hearing loss from working around very large engines before OSHA required hearing protection for my job, I created plenty of excuses for my problems before I understood the full truth of who I am.
This continuing column will be about my past, my present, and my future interwoven in a way that I hope will give you insights into what autism means to me, from an insider’s point of view. My real objective is to help you relate to autism, to help you understand what a miracle this very different viewpoint called autism can be.
I lived most of my life feeling like I was always struggling on the fringe of society, never quite fitting in, and never quite understanding why I didn’t. I was shy. I was gifted. I was a slow learner. I was brilliant. I was irritating. I was odd. I was creative. I was a loner, a misfit. What I really was was undiagnosed.
My diagnostic process began at age 53, after repeated failures at conventional marriage counseling, a third and very perceptive psychologist recognized that there was something organically wrong with me and we set out to discover what it was. Through a series of referrals and testing, they initially determined that I have ADHD (inattentive type) and a weighted Wexler Adult Intelligence Score IQ at the 99th percentile.
I went through a series of drug trials and found one that noticeably helped me focus. But over time it became apparent that I wasn’t making the progress expected in dealing with my ADHD – that something else was going on with me. About a year later, more and deeper questioning uncovered my Asperger’s Syndrome. Additional testing also uncovered an extraordinarily good long term memory, and an extraordinarily poor short term memory. I am a virtual poster child of splinter skills.
I now have a fresh perspective on my world. I determine my destiny. I create my reality. Some would say that I was given a lemon of a life because of my AS. If that is so, then I struggled to learn how to make lemonade! And my lemonade turned out to be quite exceptional.
I can't promise you that everything I’ll write in this series of articles is the absolute truth for everyone. But I can promise you that it contains my truth.