Tuesday, April 21, 2009

Asperger's thoughts

I was indulging in one of my vices lately, going through and reading some of my favorite web sites. Elizabeth Moon , a prominent author of Science Fiction and Fantasy, whose works include "The Speed of Dark", written from the viewpoint of an autistic man, expressed her opinion of the attitude displayed on the FAAAS web site as not helpful. Since I was diagnosed with Apserger's syndrome about four years ago. I'm naturally interested in learning things about my own condition, so I visited the site. I came away angry and saddened. To quote from it:

Asperger's Syndrome is a neurological disorder on the autism spectrum that has been recognized only since about 1994. It has many features of classical autism, but it lacks the intellectual learning disabilities. Individuals with this syndrome have difficulty with social aspects of intelligence, such as understanding what those around them think and feel. As a result, they often behave inappropriately in social situations or act in ways that appear unkind or callous. Many have difficulty planning and coping with change despite average or even exceptional intelligence in academic or intellectual areas. This manifests itself as a notable lack of "common sense."

Oh yes, do I know that one. I was told that my father once said, (and probably thought, many a time) How can a kid that bright be so stupid? In another conversation I once overheard between former parents-in-law:

She: You should let him use his own judgment.
He: But he doesn't have good judgment.

Ouch. Several years later, I must confess that he was right, but I would still have problems with him leaping in to substitute his good judgment for my poor one. In practical matters like how to complete formal education and get a decent job, mine was nothing to crow about. It still isn't. I don't know how to work around that. But that part doesn't bother me so much anymore. It's the next part that does.

It is the spouses, siblings, children, and co-workers of those
affected with Asperger's Syndrome that experience the emotional pain, especially
when the correct diagnosis has been delayed until relatively late in adulthood.

Don't those who suffer from Asperger's Syndrome suffer emotional pain, too? Of course they do. To have Asperger's is to live in two worlds at once; a private one of your own, which no one else quite understands, and a public one which you do not quite understand. It is to get kicked in the teeth by the rules everyone else lives by. It is to be humiliated and embarrassed when you try to do things everyone else seems to do with ease, and fail. It is living with the consequences of your own ineptitude. It is to be invisibly handicapped in a world where even the visibly handicapped are often ignored, scorned and abused.

These family members are the ones we intend to help. Feelings of rejection and loneliness play a major role in the lives of the family members of an individual with Asperger’s Syndrome. Their feelings are not validated, acknowledged, or even recognized by the afflicted person.

With all due respect to the very real need for someone besides the afflicted to help, there is a snarky response:

"I'm sorry it's so hard to for you live with me. I have to live with myself, and you too. If it's a pity party you want, I bet I can throw a bigger one."
And a more reasonable one: "Yes, sometimes I am oblivious to your feelings. (Those with AS are prone to avoid eye contact, and thus not even see the subtle cues of emotion, and are notoriously prone to mono-focus on one thing and let everything else go hang). Or perhaps, "I do recognize and acknowledge them. I just can't do anything about them. " Those with AS live in an emotional pit; they're in very poor position to help anyone else out.

And still more rationally, since "Aspies" have a hard time with social relationships in the first place, even when they recognize they've hurt someone and try to amend a situation, their attempts to fix it are apt to just muck up their relationships even worse. Once they realize this, there's a tendency to quit trying, or withdraw into the private world instead dealing with the public one. Besides that, if a situation is emotionally charged, an Aspie is likelier than most to either spin out of control or be too busy riding the bronc to deal with the feelings of anyone else.

I've found that the very hardest people for me to deal with are those who view the clinical symptoms of Asperger's Syndrome as acts or failures of will or intent. To that group, there is nothing I can say in my own defense. Anything I do say is taken as self-serving and untrustworthy, and grounds for a further attack.

But Aperger's Syndrome, like the better known classical Autism it is related to, appears to be genetic or at least congenital. Its symptoms are no more a matter of will or intent than having Down syndrome, spina bifida, being left-handed, black-skinned, or female and 6'5", all of which also involve some difficulty to the affected and others around them. It's possible to adapt, it's possible to work around, and it's even possible to learn some of the various social skills that most people use to succeed, but the underlying condition remains.

It would be better if, instead of focusing only on the problems, the site included acknowedgement that AS does have a positive side.

To have Asperger's Syndrome is also to have the ability to think sideways, upside down, and outside the box. It is the ability to ignore distractions and overcome the most formidable obstacles in pursuit of what you love, without external reward. It is the ability to achieve in a short time what others require years to master, by intense, concentrated thought and work. It is to be sensitive to things that others miss. It is the ability to become an expert, and to excel at at something.

For a little more deep philosophy, I found a great truth in a certain remark, "It is nevery easy to have a great gift. Something is always withheld to compensate." And the inverse is also true. I do not believe anyone is born with a handicap without some blessing to go with it. For me, one side of Asperger's Syndrome is indeed a curse, but there's a gift on the other.

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