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.