Through The Lens of Asperger Syndrome

How a diagnosis can change your paradigm.

Posted Jul 29, 2009

A few years ago, after I learned of my stepfather's death, I popped out to Google — hoping, at minimum,  for a glance his obituary.  Clicking on one of the links, I was surprised to find myself  reading a deeply empathetic condolence letter, written to a woman grieving the sudden death of her spouse.  A letter written by my stepfather. A letter which, according to common stereotypes of people with Asperger's, he should not have been capable of writing.  Reading what he had written crystallized a feeling that had been forming in me for some time prior to his death...I had been very, very wrong about him.

When I told my mother (from whom he'd been divorced) about the letter, she reacted with annoyance.  "Well," she said, "If he could be so caring to a stranger, why couldn't he be that way with us, his family?"  Saddened by her anger, I also couldn't disagree with her assessment.  He'd been a difficult man to understand. 

Our relationship had been rocky.  At best, I tolerated him.  At worst, I hated him.  But he had always been there. Tall and imposing, with a big grizzly beard and a deep voice, at times he scared me to death.  But he was capable of unusual kindness. 

A solitary child, raised by a single mother, we often dismissed his quirks as characteristics of being spoiled.  But, there was much we didn't know.  He didn't speak much of his childhood

When computers went mainstream, he made the move to the corporate world, where his skillset was rare and in high demand.   There, he met my mother. He impressed her with a couple of Armani suits, a brilliant mind, and a soft heart for animals.  Soon enough, they were building a life together. 

He loved crosswords, cryptics and cross-stitch. He was skeptical of God, the dangers of second hand smoke, and of global warming.  His spare time was filled with computers, Faulkner, Steinbeck and Tolkien. The soundtrack of Saturday afternoons was filled with show tunes, Wagnerian opera and Willie Nelson.  

We thought he was lazy, a malingerer. He claimed that physical activities were "hard" for the time we didn't believe it... But yet, examining his gait gave every indication that he had troubles with coordination.  He walked as if the floor was covered with a powerful adhesive.  The effort to pull his feet free would drive him into a jerky and involuntary march, knees high.   His arms remained limp by his sides - a pose that gained him the nickname "gorilla arms," a nickname some meant fondly, although I don't know that he took it so.  Running, for him, was so rare that even his best friend witnessed it only once... and we never did. 

We thought he was insensitive and rude.  He bellowed and yelled.  Yet, when I made my first forays into cooking — it was he, and only he, who would eat the results.  When I was admitted into the hospital, and my mother wanted to stay by my side,  it was he who bought me pretty pajamas and a robe to wear so that I wouldn't feel so bad lying there in an ugly hospital gown.  Despite the fact that he detested any kind of retail store.  He was unfailingly generous with his intellect and time...I never needed to ask twice for help with  homework. And he applied his intellect to the creation open-source software long after retirement, until he died.   

Looking back, it's hard to see how we missed it.  Noise was always one of his sensitivities....rock & roll would never be played in his vicinity.  Playing kids - no way.   When my mother became deathly ill, I knew immediately from the second he answered the phone.  Not from what he said, or the tone of voice — but because he answered the phone at all.  It was an activity he avoided like the plague.

Toward the end of his life, he became increasingly more and more isolated. Gone were the dinner parties with Mom and their intellectual friends.  Gone were field days out in the park with the family, and fourth of July parades.  It was him, his programming, his forums and his computers. He had shut down. 

Worn out from a world which he never fit into, he left his room rarely.  The last time I saw him, all I remember is how happy he was to have company.  To see me.  It was then I began to realize that beneath all of his faults, his crustiness, his asocial tendencies, he was a good person.  And he truly did want people in his life — but in that he often failed.  So, he withdrew into what he knew.   Mechanics. Computers.  Logic. Intellect. 

But that wasn't all there was to him.  He had a big heart as well.  One that most didn't see.  I didn't see it, except through the lens of Asperger Syndrome.

In the end, he died alone, feeling a failure as a father, and probably, as a husband.  When I think about that, I am filled with regret.  Regret that we weren't more compassionate with him in life.  Regret that we didn't somehow put the pieces together.  Regret that we didn't fight harder to meet him where he was. He was a man who had much to give the world, but his skills held him back.  He didn't know how to relate.

When I think about what services are out there for those with Asperger Syndrome, I think of him.  I think of how he struggled.  I think of how misunderstood he was.  I think of how we misjudged him, and how a little understanding, both on his part and ours,  may have helped him to have a more fulfilling life. 

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