Personal Musings of a Latter-day Saint with Asperger's Syndrome

I’ve been away from here for far, far too long, but I’m at a point where I’m ready to step it up and express my thoughts on being Mormon and AS.

For this post, I’d like to wax a little philosophical and talk about semantics.

You see, there is—objectively speaking—no such “thing” as Asperger’s Syndrome.  (And I don’t just mean the fact that it’s been removed from the DSM.)

There are certain conditions that are physically observable.  Doctors can observe cancer cells.  Damage to lungs can be physically detected.  An X-ray can show a broken bone.  Even brain damage is visible through an MRI scanner.  Even more important, once these conditions have been detected, physicians can then determine the best course to remedy them or, at least, manage them.

AS, however, is not detectable—yet.

There have been some exciting theories proposed based on brain studies, such as the recent discovery that ASD individuals have an excess of neural connections due to insufficient “pruning” of synapses in very early childhood.  Also, there is reason to believe that in the brains of ASD individuals, the parts of the brain function very well, but that they don’t work in coordination; that is, each section operates separately without regard to the other sections.  In addition, certain chromosomes have been identified as possible catalysts in the development of ASDs.

However, nothing has been conclusively proved.  No definitive connections have been made between biological phenomena and ASDs.  As a result, we simply don’t know what to look for at the present time.

This being the case, what are we left to observe?

Behaviors.  And this is where it gets a bit tricky.

Observing behavior is not an exact science.  It helps that AS is identified with clusters of behavior, but the fact remains that observing behavior is still a somewhat subjective procedure.  This is why people receive so many diagnoses—ADHD, bipolar disorder, OCD, schizophrenia, etc.—before (or after) being diagnosed with AS.  So much of the diagnosis is based on behavioral observation, which is then filtered through the interpretation of the physician or counselor.

In addition, it is not a condition that can be “cured”.  (I know, there is a raging debate among the autism community as to whether ASDs should be cured or accommodated, but I’m not going to open that can of worms here.)

What this all amounts to is that AS is little more than a label.  However, it is not a meaningless label with nothing to back it up.   But neither should it be given more power than it warrants.

My experience has been that it does very little good to say “I have Asperger’s” and leave it at that.  First of all, if I’m saying it to another person, they may not even know what I’m talking about.  Even though much of the population has hear about AS (and may even have a superficial knowledge of it with reference to Temple Grandin and Big Bang Theory’s Sheldon Cooper), few people are well-versed enough in the ins and outs of AS to truly understand how that affects the individual.  And unless somebody they know is affected by it, they may not have even had the desire to know—not because they don’t care, but simply because it hasn’t been on their radar.

More serious, however, is that labelling myself as AS doesn’t have any real practical value.  If I do so to explain my behavior to others, they may either be confused (because, as mentioned above, they don’t understand it) or see it as me making excuses for myself.  I made the mistake of doing so at work on one occasion, and I now see that it was not wise.

If I take the label to explain my behavior to myself, it may offer some temporary comfort, but it has the long-term effect of keeping me stuck in the label.  As one wise observer said, “Problems can be solved; labels can’t”.

So perhaps I would be better served to focus on improving my behaviors one by one, and leave the label to float off into the ether.

The Return

It’s been over a year since I have posted here, and the litany of potential explanations comes flooding forth.  Anybody who happens to be reading this (and I’m not sure if anybody has) could be forgiven for jumping to one or more of the following conclusions:

  • I am deceased (false)
  • I am no longer Mormon (false)
  • I no longer have Asperger’s (definitely false)
  • I am delinquent on my U-verse bill and have lost Internet access
  • My family had me committed (false–so far)
  • I lost my fingers in a tragic factory mishap and can no longer type (false)
  • I’m just lazy (partially false–primarily the “just” part)

The truth is twofold:  first, I had the sneaking suspicion that nobody was coming here, and I wasn’t sure if it was worth the trouble to post solely for my benefit.  However, I also see the value of journaling, and so I will keep this blog going (however sporadically), and if anybody else happens upon it and finds something useful, then so much the better.

In addition, I keep wavering back and forth on the “Aspie” label.  I’m learning the value of not identifying with it so closely, and I also realize that it is largely a label, a social construct (like so much else) which may or may not reflect an objective reality.  I don’t even know for certain that it describes any specifically identified brain function or activity.  As far as I can tell, it is simply a word used to identify a cluster of observable behaviors and may or may not have an anatomical foundation.  

Nevertheless (as President Uchtdorf might say in his awesome accent), I realize that it is useful to help me make sense of my life experience, so I am not dropping it entirely.  I just don’t want to overidentify with it and give it more power over my life than it warrants.

And so, I will keep stopping by on occasion.  If I find that people are leaving comments,  I will take that as a sign of public interest and will post more frequently.  My posts will probably be of a more general philosophical nature (i.e. musing on life), and not necessarily Mormon or Asperger’s related, though they will certainly be informed by both.

This morning I started listening to a podcast I’d downloaded from LDS Radio. It was an interview with a woman whose son has Tourette’s Syndrome, and much of what she said about her son’s experience reminded me of my own early years with undiagnosed (and at that time, unnamed) Asperger’s. For the longest time I saw myself as a victim of other people’s cruelty, intolerance, impatience, and failure to understand and accept me for who I was. But lately, I find myself less inclined to see myself as the innocent victim, and more inclined to take a good look at what part I may have played in my early experience. (As Dr. Phil says, “we teach others how to treat us”.)

A major reason why I found it easier to see myself as the victim and to blame others is that I didn’t want to take responsibility for what I perceived as mistreatment by others. Having often been scapegoated, I learned early on to take the blame for pretty much every unfortunate occurrence. But taking blame is not the same thing as taking responsibility. Taking responsibility simply means observing what part of a given experience is due to my input. I can take responsibility without blaming myself by accepting that I meant no harm, but that I was acting largely out of ignorance and was doing the best I could at the time. Just as I can hold one of my children responsible without chewing them out, I can hold myself responsible without beating myself up.

Of course, there is always the embarrassment that I feel when I think of my past behavior: biting people, sticking my foot out at the bottom of the slide (not realizing that somebody’s stomach would run into the foot on coming down), living in my own fantasy world and missing important instructions in class (and therefore not getting assignments or projects done), saying the wrong thing at the wrong time, being self-righteous, tattling on friends (in front of them, no less), telling my teacher that I liked my previous one better than her, calling girls with braces names, etc., etc.

Writing all of this, I realize that one common element in the above is my apparent inability to anticipate and connect consequences with what I did. I still have that trouble to some extent, though not nearly as much. (Or could it be that I just avoid people and don’t have the opportunity to misbehave? Or could that even be why I avoid people—that I don’t trust myself around them?)

It now helps to revisit these experiences and many others in the light of my AS—not that it makes them appropriate, but it does help me understand why I acted like a brat, when doing so was the furthest from my mind. Not once was my conscious desire to hurt anybody, and once I realized I had, I was horrified. And the older I get and the more I think about these incidents, the more horrified and even sickened I am.

The upside of this is that I have been able to learn from painful experience what I didn’t know intuitively: that my actions do have consequences; that what I do affects other people, no matter how isolated from them I think I am; and that slowing down to consider what I am about to do, and how well it aligns with what I know to be right, will keep me out of trouble and will make my company much more pleasant for others.

The First Clue (Part 2)

The first part of the report, summarized previously, described school history, family background, and behavioral patterns; the remainder of the report, as highlighted below, details findings related to testing.

Test Performance (WISC-R)

• “Keyed-up and nervous throughout testing”
• “Keenly interested in doing well”
• “Worked hard and was very responsive to cues as to how to improve his performance”
• “Eager, but hasty and impulsive”
• “A very active mind which makes many associations with any task assigned…distractible”
• “Began to work more steadily and carefully”
• “Once he had relaxed…[he] showed a great deal of patience and persistence…began to attack performance tasks in a methodical, orderly way”
• “Scores ranged from average to the ‘gifted’ level”
• “Visual-motor organization is…significantly lower than…general intellectual development”
• “Since his motor skills are weak and he is not interested in sports, he has tended to develop his more verbal interests”
• “Verbal reasoning and general information fall at the ‘gifted’ level”
• “Social judgment and comprehension of society’s expectations are superior—at least, he knows the rules and the reasons for them.”
• “He has not mastered…the ability to behave independently and appropriately in concrete situations [though] he can verbalize about them quite well”

Projective Drawings

• “Evidence of insecurity and dependency”
• “[Drawings suggest] angry, frighteningly aggressive feelings but no tendency to act them out and no confidence in his ability to control his environment”

Conclusions

• “Very bright”
• “Abilities governed by the left…lobe of the brain”
• “Socially maladjusted in the sense that he behaves like a much younger child and has no ability to adapt to peer standards or defend himself against scapegoating”
• “Scholastic success is likely to be adversely affected because of the depression that will ensue”
• “Cannot lead a full or happy life without learning the social skills, and the confidences, which he lacks at present”

When I first read this at age 17, it helped answer a lot of questions I had had—but not entirely. I found it fascinating, but its full value would only become apparent 13 years later.

The First Clue (Part 1)

Although I had always had some vague sense of being “different” from my peers, I never really became aware of the enormity of that difference until my teenage years—mostly from feedback that I received from peers, teachers, parents, and youth leaders at church.  By the time I was 16, the difference had become so pronounced that I found myself entirely isolated from others.  Within a few months, I became a full-blown basket case.

The first piece of actual information which gave me some idea of what was going on came into my hands when I was 17.  Actually, it was more than a “piece”—more like the jackpot.  It came in the form of a report drafted by the school psychologist when I was in fourth grade.  I was waiting to see the doctor for something or other, and I began to look through the folder of my medical records (I had been given the folder to hand to the doctor).  The report was in the folder, and I was naturally intrigued by what it had to say.  What I read blew me away.

Apparently I had been having trouble with the other boys and girls at school.  Some sort of incident occurred in the lunchroom, and I ended up seeing the school psychologist.  I vaguely remember doing some tests (involving shiny red and white plastic blocks), but very little else.

Here are some of the main points brought out in the report:

Background

  • “He has always had difficulty with peers and has always been teased and abused [by them]”
  • “He is not a fighter…He cannot bring himself to defend himself”
  • “[He has a] tendency to cry and go to [his mother] or another adult…when teased”
  • “His social maturity level is far below that of average fourth graders…His whole manner and speech set him apart as ‘babyish’ ”
  • “He is unaware of how inappropriate his remarks and his interests seem to others”
  • “Very good academic progress all the way through the grades…[with] good achievement and work habits”
  • “Improvement…needed in both fine and gross motor skills”
  • “Noticeably uncoordinated, even ascending stairs like a much younger child, using two feet for each step”

Behavior

  • “Very naïve, transparent, immature”
  • “He is so sensitive and so vulnerable that he is an inevitable scapegoat”
  • “Social level like that of a first-grade child”
  • “Bright, alert, and interested in learning”
  • “Quite competitive, constantly striving to do better than other children his age”
  • “Insecurity and chronic anxiety-state”
  • “He feels that none of his peers like him”
  • “Said…that ‘Perhaps the other children would like me better if I was smarter’…Said that some of his classmates think he’s ‘kind of stupid’”
  • “Super-conscientious [and] dependent”
  • “Able to please and appeal to adults by his ‘good’ (conforming) behavior”
  • “Not observant enough of the behavior and interests of normal nine-year-olds to adapt his conversation and manner to their standards”
  • “[Engages in] pious talk [that] is tolerated only from adults among children of his own age”
  • “A ‘family-oriented’ child, happy with and fond of all family members”
  • “Misses his father, and wishes that his grandparents and his aunt lived closer to him”
  • “A lively, active mind and a genuine eagerness to learn”
  • “He knows that he is different, but his attempts to please…lead to adult indulgence but not to acceptance by his age-mates”

(To be continued)

I am not defective. I am different.

I will not sacrifice my self-worth for peer acceptance.

I am a good and interesting person.

I will take pride in myself.

I am capable of getting along with society.

I will ask for help when I need it.

I am a person who is worthy of others’ respect and acceptance.

I will find a career interest that is well suited to my abilities and interests.

I will be patient with those who need time to understand me.

I am never going to give up on myself.

I will accept myself for who I am.

–Liane Holliday Willey

Nobody is Coming

Nobody is coming to save me.

Say it again.

Nobody is coming to save me.

Again…

Nobody is coming to save me.

I have to save myself.

Not in the eternal sense—I can’t even begin to do that—but where my life is concerned, I need to take complete, 100% responsibility for my well-being.

Nobody can make me happy.

Nobody can “fix” me or kiss my problems away.

I have no right to expect anybody to make things all better.  That is asking the impossible of them.

Nobody can reach inside my heart or mind and push a button that will make all of my problems go away.  There is no button, and even if there were, I would be the only one with access to that.  Complaining to others won’t help, either.  All it will do will drive them away.

Even God isn’t responsible to make things better.  He will help me with what I can’t do for myself, but even then the ultimate responsibility rests with myself.

I can read books and blogs and articles and listen to audiobooks and lectures and podcasts that will help, but only if I do what I learn.  Books of themselves won’t do it for me.  I have to do it.

What can I do?

  • Think critically for myself about what others have said—yes, even people at church (especially people at church).
  • Realize my absolute responsibility to make things better.  That means 100%.
  • Be patient with myself if progress seems slow, or even imperceptible.
  • Meditate 15 minutes every day to calm my mind and increase my mental flexibility, so that I can become more aware of my options.
  • Exercise every day to improve my mood.
  • Journal regularly, just as I am doing now.
  • Remember that I cannot jump directly from a telestial level to a celestial level; I can only get there via the terrestrial level of self-mastery and of being the master of my fate and the captain of my soul.  Once I have control of my self, then I can surrender it to God, and not until.
  • See my friends and family as people with their own needs and feelings, rather than merely as objects or resources to get what I need.
  • Stop using the concept of trusting in God as an excuse to not take responsibility.  God is not responsible to do for me what I can do for myself.  Just as some people say “follow the prophet” in order to avoid the hard work of thinking for themselves, I tend to say “trust in God” to avoid the hard work of doing for myself.

Is God all-loving and all-powerful?  Absolutely.  Will God come to my rescue because I’m being lazy and don’t want to take care of myself?  Not at all.  I’m on my own journey, and it is by necessity (and design) a solitary one.  I am responsible for my own growth.

 

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Hugh Nibley [off the record]

Candid musings of the LDS scholar who was the church's strongest intellectual defender and Mormon culture's gad-fly critic.

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