Asperger's Syndrome: January 2005 Archives

The Difficult Years

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Here, finally, is the long-put-off sequel to The Insulated Jar.

It's been five years since my husband died, and the time has run like sand through my fingers. My son was a freshman in high school then; now he's a sophomore in college. Maybe this time has gone by so rapidly because these have been the best years we've had. The fourteen years that preceded my husband's death were very, very difficult. On the day of the funeral four of my son's friends came over and hung out with him, all dressed in church-going clothes, they just sat and talked and sometimes they joked and laughed. They all left together when a couple of moms showed up, and after they walked out my son said "That's the first time I've had friends over to this house in four years."

After his death, I was consumed by the need to understand what had been "wrong" with my husband. I had been with him for twenty years, and I had long known that his emotional reactions seemed bizarre; as though he first decided how to feel, and then pretended it. But he never quite got it right. I couldn't explain it, but he was always just a bit "off" in his emotional expression. At times he would gush embarrassingly in lavish praise of a salesclerk in a store; at other times he would be shockingly, pointlessly rude. Unless the emotion was rage, or fear, or some such primal reaction--these came naturally.

I knew, too, that he was hyper sensitive to noise. I had frequently seen him startle in response to sounds that didn't bother me at all. Our son played with balloons because they were quiet; every time he came down the stairs from his room the sound of his footsteps set my husband's teeth on edge.

There were other things I couldn't explain. The blinds in his study had to be open. The blinds in my study had to be closed. Although he was a brilliant man, a math professor when I married him, he couldn't relate his knowledge to the world around him. He couldn't understand simple mechanical systems. We had a bizarre conversation one day in which I tried to convince him that conservation of mass was not just a rule used in the formulation of mathematical equations, it was a real phenomenon. He said "But what happens when wood burns?" and I described the classic experiment in which wood is burned in a sealed container, and the combined weight of the released water vapor, smoke, and ash is exactly the same as the original weight of the wood.

What was my husband's diagnosis? He hadn't suffered from depression, although a sudden onset of depression had certainly killed him. I've already described in my earlier post (linked above), how I stumbled on the answer, so I won't repeat the story here. Suffice it to say that once I discovered Asperger's Syndrome, it all became clear.

For a while I posted to a private, invitation-only online message board that was a support group for partners of people with Asperger's Syndrome. They would all understand what I'm saying: that the years since my husband's death have been the best years of my son's life. Their stories all mirrored my own. There was a woman whose husband bought all his clothes at Nordstrom while his children slept on mattresses on the floor because they had no beds. There was the time a piece of heavy furniture fell on a woman's two-year-old son, and her husband's only reaction was "Did it break?" There was the time my own son slipped and fell on the stairs and my husband's only response was anger at the noise. Again and again, the stories described narcissism beyond comprehension, and a complete lack of empathy.

I'm likely to get some angry email in response to this, so I'll say up front that like all disorders on the autism spectrum, there is tremendous variation between people with AS (most of whom are men), and I've heard of at least one case in which a man who recognized his symptoms worked hard to form a bond with his children. Congratulations to those few. The majority, I'd say, reject the idea that they have any shortcomings at all. Indeed, it's typical for an "Aspie" to reject any diagnosis and believe he's perfectly all right and the rest of the world is hysterical.

My husband and I had been married for three and a half years before our son was born, and we'd lived together for two years before getting married. And yet I couldn't foresee how difficult it would be to bring a baby into our lives. It's not that the courtship and early years had been trouble free--even the courtship years had been difficult. You may well wonder why I chose to marry a man to whom it was difficult to be engaged. All I can say is that I learned to navigate the rocky shores and find the few calm inlets. I attribute this tolerance to the home I grew up in--which is all I want to say about that at this time.

And besides, there were qualities I greatly admired in my husband. Most people who see the movie "A Beautiful Mind" probably wonder why in hell the wife ever married the guy, as nuts as he was. I can answer that question, because I understand perfectly why she married him; I'd have married him too. She wanted an extraordinary man. My husband was a very successful and highly respected mathematician. After his death a memorial conference was held for him at the Mathematical Sciences Research Institute on the campus of UC Berkeley, and a scholarship was established in his name.

So I navigated the rough waters of our relationship, and I learned things about him that helped. Such as, he was always, always in a good mood after a good night's sleep. His mood inevitably deteriorated as the day wore on. I assume my husband's brain chemistry was unstable, and sleep corrected whatever went out of whack during his waking hours. As fate would have it, I am not a morning person, and I was never on his wavelength after dragging myself out of bed in the morning. Nevertheless, I relied on my husband's happy mood at the beginning of the day. I knew it didn't matter if he went to bed mad at night--the anger would be completely gone in the morning. I knew I'd have a better chance of getting a positive response to any suggestion if I waited to ask until morning. There was a flip side to this trait: he was utterly dependent on sleep and quickly destabilized when it eluded him. He committed suicide after suffering just one week of insomnia.

Despite the difficulty of the early years, I failed to anticipate how much worse it would get after our son was born. My husband couldn't tolerate disruption of his schedule--a typical Aspie trait. His lack of an emotional bond with our son meant, I guess, that to him it was as though we were baby-sitting a stranger's child, constantly watching the clock, counting down the minutes until the child would be picked up, but the child was never picked up--he was ours.

And yet--he was not incapable of forming a strong bond, and he formed one with me. How I came to this conclusion several years after his death will be the subject of another entry.

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