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.

Childhood Behavior and Undiagnosed AS

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)

Self-affirmation Pledge for those with AS

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.

 

Initiating Action

A source of frustration for myself (and perhaps other AS-LDS as well) is the fact that we belong to a church of ACTION, of DOING.  Countless talks, especially those directed at the youth, cite various passages of scripture to support this concept:

• Faith without works is dead (James 2:17)
• We are made to act for ourselves, and not to be acted upon. (2 Ne. 2:26)
• We should not be commanded in all things, but do many things of our own free will, and bring to pass much righteousness.  (D&C 58:26-27)

Such statements, while intended to inspire and motivate, can have the opposite effect on the person with AS, especially when coupled with depression/anxiety as it tends to be.  Does that mean that we are not to be “acted upon” by our condition?  Are we to bring to pass as much righteousness as another who doesn’t have our challenges?

The element common to the three passages above seems to be initiative—self-starting.  It assumes that we are aware enough to know what needs to be done, and have the energy and capacity to do it.  From my own experience, I know that I often do have to be commanded in many things (not quite all) simply because my thinking tends to be a bit foggy, and I’m not always sure what to do.  I’ve gotten better over the last couple of years, but it’s something that I will probably always struggle with to some extent.

This may seem to be an unbreachable impasse—the commandment to act for ourselves, conflicting with the reality of our own limitations—but the happy news is that the Lord already knows all that.  He knows that everybody has limitations which collides with the ideal of acting for oneself; the fact of being mortal is itself a severe limitation.  To balance out the passages above, we may also remember the following:

• We are not to run faster than we have strength (Mosiah 4:27)
• If we honestly have the genuine attitude that we would do more if we had more capacity, then we are justified (Mosiah 4:24-25)
• If we have worthy desires, then we are judged by what we have been given rather than what we have not been given. (2 Cor. 8:12)

The second set of passages, in concert with the first group, indicates to me that the Lord’s expectations of us take into account the entire package:  He views us in light of both our strengths, and our limitations, but He also expects us to do what we can and not use our limitations as an excuse for not even trying.  We are to do what is within our power, and cheerfully leave the results to God’s grace.

What this means to me is that while I may need to have many things spelled out to me, I can still use my own steam to do those things that don’t have to be spelled out to me.  I may not be very good at reaching out to people, but I can let them know that I am available and anxious to be of service.  I may not be good enough to play ward basketball, but I can encourage and support those who are.

In short, as I do that which I am able to do (writing, teaching, contributing my insights to church meetings), God is more willing to work around my limitations.  And happily enough, I’m better able to face them as well.

AS and Attribution Theory

One concept which has attracted my attention over the last year or so is Attribution Theory.  This was developed by Martin Seligman in the 1960s and 1970s as part of his work on learned helplessness.  Without going into too much detail (partly because I find certain elements of his experiments distasteful), he demonstrated that when animals (and, by extension, people) come to believe that nothing they do can improve their situation, they give up.  This led him to ask what it is that leads people to give up, and he formulated his theory on the internal process that they use to explain their experience—in short, the “stories” they tell themselves.

Seligman concluded that these “stories” were strong indicators of an individual’s tendencies toward optimism on the one hand and pessimism on the other.  He divided the elements of these stories into three categories:  Permanence, Pervasiveness, and Personalization.  His assertion was that people tend to see situations as either permanent or temporary in duration; pervasive or isolated in influence; and personal or impersonal in origin.  How these perceptions relate to optimism and pessimism can be seen in the following tables:

 

OPTIMISM

 

	Positive Event/Situation	Negative Event/Situation
Permanence	This will always be a part of my life.	This is only temporary and will soon pass.
Pervasiveness	Good things like this always happen to me.	It’s unfortunate, but is only an isolated incident or a “fluke”.
Personalization	It’s my nature to cause good things to happen; I’m good at causing these “lucky breaks”.	It’s not like me to experience unfortunate situations; it must be due to circumstances beyond my control

 

  

PESSIMISM 

	Positive Event/Situation	Negative Event/Situation
Permanence	It won’t last; good things never do.	I’m always going to have trouble with this.
Pervasiveness	I just got lucky.	This is the story of my life.
Personalization	I wonder what happened to cause this lucky break; it can’t be anything I did.	I can’t believe what an idiot I am to always be getting myself into these situations.

 

A brief examination of the two tables will reveal that the Optimistic and Pessimistic explanations are near-exact reversals of each other.  (They also bear similarities to the Cognitive Distortions which serve as the pillars of cognitive therapy.)

I believe that individuals with AS and other neurological disorders are vulnerable to pessimism/learned helplessness because we have been conditioned to view the brain as determining not only our behavior but also the level of success or failure we experience in this life.  As Latter-day Saints, we also believe that we bear ultimate accountability for our actions and that what we do in mortality has eternal consequences, thus adding an extra dimension of anxiety. 

Thankfully, we also believe that our challenges and individual circumstances are taken into account in the judgments of the Lord.  Perhaps the words of President Boyd K. Packer are applicable to individuals with AS and similar challenges:  “While your temptations [or challenges] are greater than were ours, that will be considered in the judgments of the Lord. He said that ‘his mercies [are suited] according to the conditions of … men.’ (D&C 46:15.) That is only just.”  

Aspergers and the “Grey Zone”

Individuals with Aspergers are particularly vulnerable to living in what is sometimes called “The Grey Zone.”  Perhaps an illustration will help to explain what I mean by this. 

Behold the boy wizard Harry Potter serving detention in the Forbidden Forest at night.  He comes across a shadowy figure drinking the silvery blood of a dead unicorn.  The figure is none other than Harry’s archnemesis Voldemort, currently a ghost of his former self.   Noticing Harry, Voldemort begins advancing on him. 

Seeing Harry in peril, the centaur Firenze comes to the rescue.  When Harry asks about the figure he saw, and why he was drinking the unicorn’s blood, Firenze explains: 

“The blood of a unicorn will keep you alive, even if you are an inch from death, but at a terrible price. You have slain something pure and defenseless to save yourself and you will have but a half-life, a cursed life, from the moment the blood touches your lips.”  (Harry Potter and the Sorcerer’s Stone) 

Living with AS is, in many ways, like living this half-life—not living so much as existing–or rather living in a “grey zone”.  As the name suggests, life in this zone is neither one thing nor another, but somewhere in between:  not exactly sad, but not happy, either; not insane, but not mentally healthy; not asleep, but not quite awake; and so forth.  It is what Lehi referred to as a “compound in one”, a hazy existence with nothing very clearly defined.  It is frequently characterized by shame, grief, withdrawal, and despair.  There is a constant undercurrent of melancholy and “nothingness” which colors every aspect of life (gray, of course). 

In my own experience, life in the Grey Zone is largely dominated by “Not stupid, but not very intelligent”.    It’s a form of sleepwalking through life, being partially aware of what is happening in the outside world, but not entirely.  Because of this, many autistics are perceived as being self-absorbed.  While there may be some truth to this notion—I often get caught up in my own thoughts to the point that I am largely unconscious of my surroundings and other people—it is an oversimplification of a complex mode of existence.  Much of the work to be done by the AS individual involves getting out of the Grey Zone and awakening to life in all of its complexity, uncertainty, and energy.

I’m Baaaaaccccckkkk!

I visited my own blog (somebody had to) for the first time in some four months–I’d almost forgotten I’d registered this blog at all.

After a series of events rather too long to relate here, I found myself in the hospital, where I was put back on my meds.  Funny–it was only then that I remembered that I hadn’t been on them for nearly two years.  I wasn’t in any hurry to be put back on them, but they seem to help me function.  In fact, when I was released I found myself facing a rather serious problem which helped land me in the hospital in the first place, and had no trouble solving it in short order.  I guess it’s true that depression makes you stupid.

I’m feeling a bit tired at night–probably because I don’t seem to need as much sleep as before and end up waking around 4:30 AM.  

It seems a bit out of place to be talking about depression on an Asperger-related blog.  But perhaps not, since AS and depression seem to go hand-in-hand.  I expect that I can move on to more interesting topics from now on.

(Assuming, of course, that I don’t continue to forget that this blog exists…)