Speechless, at a loss for words.

Scrabble (Mattel, Inc.) (Photo credit: Wikipedia)

I was at a loss for words and speechless on a couple of recent occasions.

The cardiologist:

The first instance of finding myself speechless occurred when a cardiologist poked me in the indentation in the center of my chest and said, “That is hard on your heart!” I was lying on a table in preparation for an echocardiogram, and this took me by surprise as no other doctor had ever expressed concern. I wanted to know why it is hard on my heart, but I couldn’t find any words to assemble into a sentence to respond. After a pause, the cardiologist poked again and repeated, “That is hard on your heart!”

With still no response from me, he proceeded with the echocardiogram. I wished I had been able to ask him what he meant by his remark, but no words came to me. So I have scheduled another appointment in a few weeks specifically to ask why that is hard on my heart, and what I should do, or not do, to help my heart. Hopefully, in the intervening weeks, I will be able to assemble a list of relevant questions.

My Family Physician (PCP, GP):

The second instance of being speechless occurred in my family physician’s office. I have only been seeing her for about three years. I have never gone into detail with her about my longstanding ME/CFS (Chronic Fatigue Syndrome), or any of the other conditions that come with it, because I have seen many specialists over the years and have resigned myself to the reality that the medical profession has no cure. However, I was dumbstruck to hear her say that I simply needed to get more aerobic exercise, and that there is nothing wrong with me physically! And she briefly described a plan for increasing aerobic activity. I think this was her polite way of saying that she thinks my illnesses are all in my head.

Over the past nineteen years, I have learned from several doctors that there most definitely is something physically wrong, that I will probably never recover, that aerobic exercise may be harmful, and that my illness is not in my head. And I have made many attempts to increase my activity level, all  to no avail. However, I found myself unable to respond, literally speechless.

As a result, my physician undoubtedly assumes that I accept her misdiagnosis, and her inappropriate treatment plan. I have about ten weeks until my next appointment, and so I will be attempting to prepare a response to the question I expect: “So how is your aerobics program going?”

The pause that reboots:

This inability to quickly assemble words, in response to an event or to a question, is a common experience for me. I often have to pause, or even go away and think things through, before I can generate a response. An exception might be when someone attacks me. Then a response might explode as if shot from a cannon, which is usually not very helpful as it has not been well thought out. Another exception would be when I am talking about a special interest of mine. Then the words just flow non-stop!

An alternative way to think:

I often think in pictures. I can design and build a house, or a boat, entirely in my head — or drive a steam locomotive, or have a stimulating conversation with anyone — all in my head. This inner reality is so vivid it is almost like the real world. I’ll write about how thinking in pictures can sometimes interfere with good communication in my next post.

So do you ever find yourself at a loss for words?

Edit: I put a link in the comments to a video on communication aids for iPod and iPad.

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Engaging in Relationships or Encounters

“People Socializing at the Theatre” via Wikipedia

I tend to undervalue or devalue my contribution to relationships or social encounters. When I have shared my doubts about my worth, people have often reassured me that I am indeed appreciated. Yet I find this difficult to accept, in spite of the many times I have heard this.

Stopped bothering: 

It reached the point (several decades ago) where I usually don’t even bother to attempt to join in, because I believe I have nothing to contribute, or the effort would be too great for the reward, or the probability of failure is too high. I suspect this has its origin in my childhood when I had trouble fitting in, or trouble expressing my thoughts, or adults judged me as in some way inadequate. I also remember concluding from my own observations, that I was simply not like the majority in my interests and in my reactions to events. And the majority often didn’t appreciate or understand my views. So I stopped bothering to express my views.

Fear of rejection:

I also fear rejection, and so I avoid the risk of engaging. My anxiety levels are often very high when faced with a social encounter. So I tend to shy away from exposure. And I tend to dislike and avoid change, so I seldom venture anything new in my relationships. I know this is not a pathway to growth, but rather stagnation, and so I am trying to engage more. But even on the internet I feel social anxiety. I was glad to see that I am not alone in this. A recent post on Alicia’s Moonlit Lily mentioned (near the end) that social anxiety applies to the internet as well. Yes it does!

More accepting of myself:

I do find some hope in the fact that, since I discovered that I am most probably Aspie/autie, I have been more accepting of myself as I am. This is because I view my Asperger’s/autism as largely not my doing. It is simply the way I was made. I no longer view my “failures” in the social realm as totally my fault. And so I am  a little more willing to put myself out there just as I am, without judging myself so harshly. This new and growing sense of being more acceptable to myself, has taken away some of the stress from relationships and brief encounters. I find I am not blaming myself for my shortcomings quite as much as I did before.

Rejecting the old tapes:

I am less influenced by the old tapes playing in my head that demand that I be more sociable and get out there and meet people. And I am becoming more tolerant of my “shortcomings,” such as having limits as to time and energy with which to engage, needing time alone to recuperate, not getting all the non-verbal flow of the interactions, needing longer to process and formulate an appropriate response, and freezing or getting tongue-tied or stuck for words when suddenly asked a question.

The setbacks still hurt:

And of course there are setbacks too, and I still have a tendency to engage in “sudden jerking of arms and yelling” over my “failures.” The emotional pain from missing the meaning or purpose of an encounter can be enormous. I can feel so sad when I botch yet another encounter by misinterpreting the other person’s intent, or not expressing myself clearly enough to be understood. It is always tempting to just fall back into hermit mode, where I have spent so much of my last twenty years.

Making the effort:

But with greater acceptance of the way I am designed, my participation in relationships, or new encounters, has grown slightly. Each little success encourages me to keep trying to engage more (in some incremental way). By “success” I don’t mean a lengthy, dynamic, extroverted conversation, but some minor improvement over my last effort. The small successes do give me some hope to carry on. And the rewards of engaging make sure that I will continue to put forth the effort.

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Autistics Speaking Day

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I started this day oblivious to the fact that it is now November first. I am usually behind the calendar in my thinking. The first thing I read today was Alicia’s absolutely beautiful post on her blog, Moonlit Lily, which you can read here. I can’t say anything better so I won’t even try!

Blessings,

Bruce

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Eye Contact in Asperger’s, Autism: my first Aspie video!

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This is my first Aspie video: Eye contact in Asperger’s, Autism. #1 by Bruce.

If you like, you may watch it below in this post, or on YouTube, or on my YouTube channel. It lasts 9 min, 38 sec.

I’d love to have your comments on eye contact in general, and your experience with it.

Also, if you have time to view the video, I’d love to have your impression of what I say in it. Does it resonate? Can you relate?  So, if you have time, please comment here or on YouTube (or both ). Thanks

Unable to comment on blogs.

I am unable to comment on blogs. When I click on “Post Comment” my comment simply disappears without trace. I am looking for a solution and hope to be able to comment again soon.

I sent the following request for help to WordPress Support on October 4, 2011 at 2:01 pm:

Hello WordPress support person,

When commenting on another blog, my comments disappear when I click on “Post Comment.”
At first this was happening only on Blogger/Blogspot blogs but not WordPress.

Now it is happening on WordPress blogs as well.

It even happened to me when I was replying to a comment on *my own* WP blog. I eventually found my reply in my Spam folder and was able to move it to the comment under my post.

When I type my comment in the box, it looks perfectly normal. Then I click the “Post Comment” button and Poof! the comment vanishes out of sight.

I am not aware of having made any changes to any settings on my computer.

I did open a google account so I could open a YouTube account, but I don’t see how this should interfere with commenting on blogs.

Thanks for your help with this.
Bruce 

Hopefully I’ll be back in action soon. Thanks for reading my blog.

Just a Passing Burnout?

Learned skills for passing as “normal.”

Bruce, why can’t you be like us?

I have seen a couple of people (in videos) who have become very good at “acting normal” or “passing.” They do this by practicing learned skills; skills they have learned through careful observations, or through coaching, or life-lessons. I admire their skills and wish them success, but I wonder if they may be vulnerable to a crash or burnout.

Empty but for Programs.

I was struck by how one such person seemed to me to be wooden or hollow inside. It seemed as though the real person had vacated, and all that was left were the programs for fitting in. A high price to pay, I would say. Where did the real person go?

Stress and Strain.

If the underlying biology of the brain isn’t altered by the social conditioning and programming that enables the “passing,” then I would imagine that succeeding at passing must take an enormous amount of energy. I know it did for me, even though I seldom “succeeded” very well. My brain processes incoming social information much slower than normal. I have always found it very hard to fake a normal tempo of interaction. My life-long attempts at “passing” required me to push myself beyond my limitations. The accumulated stress precipitated a crash.

Since discovering my Aspieness in August/September 2010, I have learned to pace my social interactions, and take breaks, use earplugs, use sunglasses even indoors at times, and simply be more accepting of myself and more kind to myself.

We are Vulnerable.

I am concerned that, under sufficient stress, even the most skilled and proficient “passer” is vulnerable to a crash back into their Aspieness/autism. My guess is that learned skills may counteract Aspieness/autism in some routine situations, but they do not erase the Aspieness/autism. Therefore sufficient pressure, say in a crisis or a prolonged social engagement, may cause a regression to previous levels of performance. This may cause the “passer” to be very discouraged with themselves if they believe that they had mastered passing, or if they believe that “passing” is crucial.

The Strain of “Passing.”

I am worried that the strain of a life-time of passing may lead to a burnout or major crash in mid-life or later. I had a major crash or burnout in my late forties which was eventually diagnosed as CFS/ME when it was clear I wasn’t recovering from the burnout. For the past eighteen years the medical profession, has considered me “totally disabled,” meaning unable to work at all. But now I’m wondering if it may have been a Midlife Autistic Burnout, or both MAB and CFS/ME. Perhaps one made me more vulnerable to the other.

Just a “passing” burnout?

Was it just a “passing” burnout that I had? It certainly hasn’t gone away as a true burnout should have by now, so I am still considering myself to have CFS/ME which may have interacted with, and been exacerbated by, MAB.

I had no idea as to why I struggled.

I only discovered my probable Aspieness at 65 years of age, so all my prior attempts at “passing” were done without having a clue as to why I struggled so much to fit in. I struggled with bright lights, loud sounds, keeping up with conversations and filtering multiple conversations in group settings. And I did this without giving myself permission to take guilt-free breaks to regenerate. I drove myself very hard, and was very disappointed by my “failures” at fitting in. Little did I know that I was missing most of the non-verbal side of conversations, and this made the task of fitting in so much harder — essentially impossible.

Pacing while passing.

I think the ability to pass may have upper limits of intensity or duration. So I would encourage skilled “passers” to pace themselves, schedule breaks and recuperation times, and not be too demanding of themselves.

It is my hope that young people, who know about their “differences” and “needs,” will fare much better than I did. I didn’t realize that there was a reason that I should be taking breaks and being selective as to where, and how much, I should attempt socializing. In my ignorance of my Aspieness I just kept pushing myself to fit in, and then I crashed. So be kind to yourself. Take good care of yourself!

Prayer request for Nina

Hello Friends!

I have just started a YouTube channel as a result of seeing a young woman on YouTube request prayer for her health. By having a YouTube channel I can let her know that I am praying for her through a comment or message. Otherwise I don’t know how to reach her. I happened upon her YouTube channel by “accident” because I was watching a video on “invisible illnesses” such as Lupus, Chronic Fatigue Syndrome, Fibromyalgia, Multiple Sclerosis, etc.. One of the suggested videos on that page was by Nina and it was about Postural Orthostatic Tachycardia Syndrome (POTS) which can make one faint. I have Chronic Fatigue Syndrome (CFS) and sometimes feel I am passing out from bradycardia, which is also an autonomic dysfunction, so I clicked on Nina’s video and from there I went to her channnel, AmazingGrace160. You can watch her videos here.

Nina is a very courageous person who has persevered in her trials with Postural Orthostatic Tachycardia Syndrome and very severe chronic Guillain-Barré Syndrome. At the time of writing I believe she is in the Intensive Care Unit undergoing plasmapheresis. She has requested prayer for herself and her family.

So if you pray, will you please pray for Nina and her family? And if you send love, will you please send love to them? And if you hold people in your heart, will you please hold Nina and her family? Thank you very much.

Here, thanks to Nina, is my very first (and perhaps only) YouTube video (I don’t know how they picked the still photo of me, I wish I could change it! ).