by Jamie Pacton, MA
Autism Asperger’s Digest | Online Article May 2012
My husband is a strange guy.
He is difficult, socially abrasive, and has been known to be arrogant. He doesn’t tolerate small talk, he doesn’t understand why I send paper birthday cards and thank-you notes, and his general sense of social norms is skewed to say the least. He can’t fathom why more words are required when less will do the job just fine. Besides calling me, he only makes one phone call a week (to his parents). He gets frustrated with friends if they don’t act according to the exact parameters he has for friendship.
He once told me that he doesn’t understand “fun” although he will often play pranks on his colleagues that he thinks are funny like “accidentally” blasting music from his laptop in a room full of quiet scholars.
I hear about these pranks and stutter with disbelief. “You didn’t do that, right? Tell me you didn’t do that?”
He just smiles. “Well, yeah, it was funny.”
“Did anyone else think so?”
“Well, no, but it was funny. They just can’t see it.”
I shake my head and wish that others could see what I see in Adam.
Beyond his rough edges, Adam is funny, warm, loyal, creative, smart, interesting, a good cook, and an incredibly loving father and supportive partner. We like the same things, we have similar occupations, the same TV shows make us laugh, and we even agree on the best-ever Ben and Jerry’s ice cream flavor. We’ve been together for over a decade, and he still makes me laugh. I’m happy to see him every day.
I adore him, but not everyone in my life feels the same way. In fact he’s rubbed many people—in both our family and friend circles—the wrong way over the years. I hear all sorts of complaints about his quietness at family gatherings, his occasional seemingly self-aggrandizing pronouncements (that he just genuinely believes are offering helpful advice), and his fidgety discomfort with get-togethers over an hour or so. People rarely come to visit us, and I worry that my family will never get to know the real Adam.
I have defended him, tried to change him, and made excuses for him. Usually I think I make things worse. It’s always been sad and mysterious to me that Adam can’t be the same person he is to me and our kids with other people.
At least it was a mystery until we got my oldest son Liam’s autism spectrum disorder (ASD) diagnosis. As Adam and I learned more about ASD and Asperger’s Syndrome (AS), more and more pieces of Adam’s personality fell into perspective. Many of his actions and interactions made sense all of a sudden. We’ve found portraits of him all over the ASD books we’ve read.
As Adam read Emergence: Labeled Autistic (Warner Books, 1996) by Temple Grandin, he kept shaking his head.
“What’s up?” I asked.
“This is me as a kid,” he said. “Totally—from the pranks, to the sensory issues, to the anxiety.”
Well, well, well. Interesting indeed. I always knew something was a bit odd about the stories from Adam’s childhood.
He used to sit in his dark closet for hours. He liked to rock on his bed for hours just because. He had an elaborate fantasy world in his head that he’d inhabit for a long time every day. He was labeled “retarded” by his teachers in elementary school, but only in an informal way. His family jokes about his need to disappear at every family gathering, shrugging and dismissing it as “just Adam.”
He flunked most of middle and high school—bored, misunderstood, and rebellious—only to be admitted to Cornell Law and two other PhD programs later in life. He can remember any face, no matter that he saw it for just a short time (but he cannot read emotions very well). He cannot remember any dates, except my birthday and our kid’s birthdays (although he has to work for these). He often suffers from crippling anxiety, which got so bad during our 20s that I did all the driving for over a year.
Do these traits, with a hundred or so others, put him on the spectrum? Would he get an official diagnosis if he went to see a psychologist?
I think so and so does he, but the really intriguing question is: why bother?
John Elder Robinson, a writer who got an AS diagnosis at 40, notes in his engaging book be different: Adventures of a Free-Range Aspergian (Broadway, 2012): “Asperger’s explained so many things…My new knowledge of Asperger’s brought [my] memories into focus, and I saw how the differences in my brain had shaped the course of my life in countless subtle ways….As I moved forward with new knowledge and confidence, I started to see my life get better every day” (8).
Would the diagnosis do the same for Adam? Would it help our sons feel more accepted as they grow up—one with a much more severe form of autism and the other an unknown quantity at this point? Would it help Adam feel more comfortable in his own skin? Would it inspire others to get the diagnosis as well? Would it provide a compelling example of what someone on the spectrum can accomplish? Would it be an entrée to the realm of ASD that I can never access because I’m not on the spectrum? Would he be more qualified to speak about ASD with a diagnosis?
I don’t know. But, I suspect the answer to all of these questions is yes.
Would Adam’s life have been different if he had gotten a diagnosis early in life? He would have received some help in school, therapy to make him more social, and he would have been hounded to get out of his world and into ours.
Now, I know he was never so far into his world as many ASD kids are—my son Liam included—and I’m not saying that it’s a bad thing to make kids on the spectrum relate and interact. But the vibrant inner life that Adam enjoys as an adult was cultivated as a weird, quiet child who sat silently on his bed, staring into space for many hours each day.
Moving on to the really interesting questions—how would Adam’s teenage years have been different with a diagnosis? Would he still have been a social misfit who reacted to his differences with anger and rebellion? Or would his difference have been nurtured? Would he have spent his teenage nights at home playing the cello or writing books or something like that?
Would I have dated him if he were not my bad-boy boyfriend, but instead my special-needs
boyfriend? Would we have decided to have kids if we knew that his quirks had a clinical designation and a clear genetic linkage? Would I have missed out on having my children?
I don’t know.
All I know is that Adam is an amazing person, with or without the diagnosis. If he gets the diagnosis as an adult, I’ll support him. If he doesn’t, we’ll both know the truth of it.
That truth, plain and simple: he is more than the sum of these traits. Like every child and person on the spectrum, he is unique, worth getting to know, and perfect—just the way he is.
Jamie Pacton, MA, is a writer, professor, and mother to two young boys (one who is on the spectrum). She spends her free time reading, cooking, writing fiction, and enjoying her family. Visit her at www.jamiepacton.com.
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