On the Spectrum: Not That There’s Anything Wrong With That – Scary Mommy

On the Spectrum: Not That There’s Anything Wrong With That

Last November, Jerry Seinfeld gave an interview to Brian Williams on NBC in which he said he’d recently come to think of himself as existing somewhere on the autism spectrum:

Seinfeld: “I think, on a very drawn out scale, I think I’m on the spectrum.”

Williams: “Why? What are the markers, if I were sitting here analyzing you?”

Seinfeld: “You’re never paying attention to the right things. Basic social engagement is really a struggle. I’m very literal. When people talk to me, and they use expressions, sometimes I don’t know what they’re saying. But I don’t see it as dysfunctional, I just think of it as an alternate mindset.”

The reaction in the autism community was immediate. Autism Speaks, for whom Seinfeld has done charity work, made the following statement: “There are many people on the spectrum who can relate to Jerry’s heartfelt comments about his own experience.” Autism Society President Scott Badesch said, “We are delighted that he will be an example of everyone to see the beauty, intelligence, skill, and everything else that defines so many who live with Autism Spectrum Disorder.”

But on social media and elsewhere, the reaction was just as swift in the opposite direction, with the overriding sentiment being: How dare he self-diagnose. “My son has autism, Jerry Seinfeld does not,” wrote one father of an autistic child. Other parents of autistic children took to Twitter to express their dismay. “THIS is autism,” wrote Kim Rossi Stagliano, the mother of three autistic children. “My 3 girls @JerrySeinfeld 1 does not speak,. 1 in single words, 1 paralyzed by anxiety.”

Two weeks later, Seinfeld recanted. In an interview with Access Hollywood, he said, “I don’t have autism. I’m not on the spectrum. I just was watching this play about it and thought, ‘Why am I relating to it?’ I related to it on some level. That’s all I was saying.”

What a shame, I thought, this backpedaling. Particularly if Seinfeld was relating to the protagonist in The Curious Incident of the Dog in the Nighttime, a play about an autistic child trying to navigate a predominantly neurotypical world which, because it opened a month before his pronouncement, is the play I’m assuming was the triggering work of art.

I happened to see that play, too, and though loved both it and the YA novel upon which it was based, here’s the thing: I did not relate to the struggles of the main character at all, except by association. Meaning, I could understand what the protagonist was going through not because I’m on the spectrum or even have suspicions that I may be on the spectrum, but because the man to whom I was married for twenty years is.

My ex was diagnosed with Asperger’s in 2011, back when we were still a couple, back when Asperger’s was still the preferred diagnostic name for High Functioning Autism Disorder. This was eighteen years into a marriage that had been problematic for years prior because of the disparity—and we only understood this in retrospect—in the way each of us viewed the world.

I look at life through a neurotypical lens, meaning I have what autism expert Dr. Richard Perry, who diagnosed my then husband, calls “a theory of mind”: an ability not only to see things through another’s eyes but to actually feel, on a quantifiable, neurobiological level, what that person feels.

“A deeply felt mirroring,” writes UCLA neurologist and neuroscientist Marco Iacoboni, whose brain imaging studies have pioneered the investigation of empathy in humans, “that moves people closer to each other and makes emotional connectedness possible seems to be the main deficit of patients with autism.” This mirroring is related, in the neurotypical, to the existence of mirror neurons, which fire both when we observe actions and when we performs those same actions.

On an exam that measures empathy, which I took out of curiosity during the time of my ex’s diagnosis, I scored a 68 out of a possible 80, with 1 being the least empathic, 80 the most. My ex, on this exact same test, scored a statistically quite low 8, meaning he finds it hard if not impossible to place himself in another’s shoes.

Once the two of us had these test results and the diagnosis of Asperger’s from Dr. Perry in hand, all of the many question marks, conflicts, and oddities of our troubled past suddenly made perfect sense. To both of us. In other words, the diagnosis in and of itself was a relief, because we’d a) suspected as much; b) self-diagnosed (much like Seinfeld) after reading David Finch’s The Journal of Best Practices; c) had my ex take an online test for Asperger’s; and d) sought out Dr. Perry, who confirmed our suspicions with further testing and a careful and judicious diagnosis.

And yet even with this diagnosis in hand, from a trained specialist in the field of autism spectrum disorders, we found that many of our close friends and family members, like Seinfeld’s naysayers, refused to believe it. How could a then 45-year-old man and his wife of nearly two decades—a novelist at that, whose job depends upon her ability to understand and dissect character—have been so in the dark about this fundamental thing? “It doesn’t make sense,” they’d say. “How could you not know he had Asperger’s for all these years?”

But the truth was we did. We just didn’t. In fact, because my ex, much like many other high functioning people with Asperger’s, has mastered the art of social interaction, we never even considered it a possibility until we had a name for it.

“What some people may know about Asperger’s,” Dr. Perry said, when I sat down with him recently with my ex’s permission, “is what they read in the newspaper. For example, there’s this adult with Asperger’s who’s really into trains. He would find a way to get into the train yard, and even on one occasion drove the train, and he gets arrested, and if somebody reads about this person and thinks that’s what an Asperger’s person is like, they’re going to be misinformed. They’re going to jump to the conclusion that my patient was a ‘weird’ guy like that guy.”

Further complicating public perception of Asperger’s is its recent removal from the DSM-V, an omission whose rationale Dr. Perry called both flawed and problematic with regard to clinical utility. “Clinical usefulness is like this: If you tell me you have an ulcer, that means something to me. You don’t have to say, well, I have this pain here, and I get this pain there, you don’t have to go through all the symptoms. And if somebody says that they have Asperger’s disorder, to me that’s clinically useful. I understand that everybody who has Asperger’s disorder is a little bit different or even a lot different than the other person who has it, but I still think it’s clinically useful.”

Another complicating factor is simply the timeline of our understanding of high functioning autism spectrum disorders. Adults of my generation, like my ex and Seinfeld, would not have been diagnosed as children, as Asperger’s wasn’t officially recognized as a high-functioning subset of autism until its appearance in the DSM-IV in 1994.

Meaning, in lieu of a diagnosis from his childhood, my ex and I just had…anecdotes. Lots of them.

There was that time when we were in a crowded train station in Milan in 1990. “Stay here,” I’d said off-handedly, “I’ll go get us some water.” When I returned to the appointed spot with the two bottles of water, he was nowhere to be found. Two hours later, in that pre-cellphone era, I found him outside, deeply ensconced in his tourist guide to Italy, totally unconcerned that we’d been separated for hours. When I expressed my anger and frustration over this, he was completely flummoxed by it.

There was that time when he stood up from the table, five minutes into a dinner party we were hosting, and announced he was going to the gym. He’s quirky like that, I explained to our baffled guests, as I removed his plate from the table.

He has the typical spectrum-related obsessions as well. He knows the name and serial number of every armament and weapon of war ever produced. Once we were standing on Red Square in August of 1991, during the first hours of the Soviet coup, watching a column of tanks roll down Gorky Street. “Tanks!” I shouted, shaking so hard I had to steady my camera against the bridge of my nose.

“Those aren’t tanks,” said my future husband. “They’re APC’s. BTR60’s.”

I laughed then. What did it matter, I shouted, the name of the vehicles? What mattered was what they represented. And the fact that they were heading straight toward us. I found all of this incredibly endearing back then. I loved him and his obsessions.

Over the course of our long marriage, there were countless other spectrum-related oddities and incidents—some I will never write about, others that, even in retrospect, still make me sad—but the one that made me realize we were fundamentally mismatched was the time I called him at 9 a.m. from the children’s ward of Columbia Presbyterian, where I’d been sleeping in a chair next to our gravely ill child for five days. It wasn’t until our son, who’d been battling Kawasaki Disease, was finally on the mend (though he would actually relapse a day later) that I began—or rather allowed myself—to collapse. I called and begged my husband to relieve me. Immediately. “I’m losing my shit,” I said. “I need help. Or at least a walk outside. I need to feel the sun on my skin. Go get a coffee. Something.”

He showed up eleven hours later, at 8 p.m., after having stopped off for a drink with his coworkers. It was his boss’s birthday, he explained. He had to. I led him outside our son’s room and spoke the words softly but firmly: “I want a divorce.” He looked crestfallen, once again completely flummoxed by my fury.

I could feel, as if they were mine, every spike of the pain my words had just caused him, and this disparity—that I could literally feel his pain but he could and never would feel mine—made me feel even more alone. My husband stood his ground, appealing to my sense of logic: My breakdown at the hospital over dealing with a sick kid who was finally on the mend was not logical, he said. Getting a drink with your boss on his birthday was.

Logic has nothing to do with this, I said. It’s about emotion. And the way each of us processes the world. He might as well have been Sarek to my Amanda Grayson, so different were our ways of seeing things. And yes, the ironies of our eldest having been asked to play Young Spock in Star Trek was not lost on us.

“I want a divorce,” I repeated, crying. I’d lost the will and energy to keep arguing the validity of my position. It was just different from his, that’s all. Neither one of us was right or wrong. We just existed on different spectrums.

These thoughts and memories came rushing back when Seinfeld first announced his suspicions of his own high-functioning autism and then, without seeking out a specialist to confirm or deny it, recanted. Asperger’s has of late been destigmatized—if not downright glorified—in the high-tech world (think Mark Zuckerberg, Bill Gates, and a whole host of others suspected of being on the spectrum), but a diagnosis of Asperger’s outside the tech world still carries the kind of stigma a person of Seinfeld’s stature and success, had his suspicions proven true, could have helped ease.

Without a proper diagnosis, he and we will never know, and none of us but Jerry Seinfeld himself can tell us what goes on inside his brilliant head, but his obsessions alone make me suspect that his hunch may have been correct. Take the Porsches. He has a rumored 46 of them, stashed in a secret Manhattan garage. Not that there’s anything wrong with that. But it does point to a certain Aspergian tendency I understand all too well.

“Please,” people will say to me, when I explain the role that the disparity between our different lenses on life played in my marriage’s unraveling, “don’t all men have Asperger’s?”

“What I usually tell people,” says Dr. Perry, “often with a little grin on my face, but I think it’s true: If you know every way that Asperger’s manifests itself, you’ll probably find at least a little bit of it in just about everybody, particularly men. I think a large part of humor—male humor—is being sort of clueless. And on Seinfeld, they can be clueless. Larry David, who is a writer on his show, he’s even more so. There’s this episode where a friend of his dies. He goes over to the widow’s house, and he’s looking at the picture of him, and he says something like, You know, I really like that shirt. What are you doing with it? Like, he can’t use it anymore. I mean really—that’s kind of an Aspie thing, you know?”

So, Jerry, if you’re reading this, here’s a quick thought: you have one of the leading diagnosticians of Asperger’s, Dr. Richard Perry, within a ten-minute walk of your apartment. I’ve done you the favor of Google mapping it. Go. Do a little pop-in. Find out if your hunch was correct. No one is asking you to be the poster child for Asperger’s, but you should have never been bullied into recanting. The spectrum is broad, and the fact that someone like you might have high functioning autism should not affect the funding and research of programs for those in much more severe circumstances. Once you find out if you are indeed on the high-functioning end of the spectrum, this information will be not only clinically useful to you if the answer is no, it will be both clinically and psychologically useful to all Aspies out there—and to those of us who love them—if the answer is yes.