I get migraines.
For years, I’ve had debilitating headaches that require a specific set of treatments; wrap my head in ice packs, lie down in a dark room, stay away from scents and odors, take caffeine and pain killers. If I do those things, the headache goes away in a couple of hours.
These are common treatments for migraines in people who don’t require prescriptions. I’ve been following these protocols for twenty years, and so far, I’ve avoided vomiting out the car window the way I did when the headaches first started two decades ago.
From what I have read, I don’t actually have migraines per se; I’ve never experienced some of the classic symptoms like tunnel or narrowed field of vision, the “aura”–which includes irritability, lightheadedness, seeing flashes of light, speech problems–that presages the headache itself. I’ve seen friends go through these symptoms, and it’s unmistakable. But I’ve never had those symptoms.
It’s likely that what I have are cluster headaches; they come on suddenly, they are localized on one side of my head–usually behind or around one eye–and they happen almost always at the same time of day, in the morning for me.
Whatever they’re called, the ice pack/pain killer/low light treatment/no odors or sounds works. Every time. Because they can ruin my plans for a day, including work and other appointments, I have found it’s easier to tell people I have a migraine than I have a “cluster headache.” It doesn’t matter what I call it if the treatment is the same.
Since writing about Tim’s recent diagnosis, I’ve noticed some incredulity among people who have known us a while. What? Tim has Asperger’s? How can that be? He seems so NORMAL.
A couple of things come into play here. First, high-functioning people with Asperger’s develop coping skills over their lifetimes. These skills are known as “masking.” They see that there are rules of functioning in society, and strive to follow those rules, so when they’re out in the world, they seem just like all the other people in the world. Typical. Nothing stands out.
It’s when they’re at home that the mask comes off, and all the stress that’s built up from keeping that mask on all day gets released–that’s when the symptoms become evident. Social-function deficiencies aside, Aspergians will become explosive over minor stimuli, an inability to empathize, difficulty understanding gestures or facial expressions, strict adherence to routine, inability to express or understand feelings.
And secondly, when you consider these symptoms, you’ll realize that these are the types of behaviors not readily observed in relationships with acquaintances. These are the kind of behaviors or gaps that are observable at home, and in the context of a close relationship, like your family of origin or a marriage.
Tim and I have discussed these symptoms in one form or another our whole marriage. During the child-rearing years, the discussion focused on his difficulty getting close to the kids and providing emotional support during some difficult stretches. Going through his divorce/custody battle presented multiple occasions during which our youngest child required extra emotional support; our daughter’s medical challenges served up a host of other opportunities requiring emotional connection. Those were our first clues about Tim’s neurological differences. He didn’t even have an intellectual framework for the emotional demands of parenting.
I am the main reporter of Tim’s behaviors in the intimate setting of the home, so on some level, you have to trust my observations. Marriage reveals behaviors not known to outsiders. Any marriage is the best mirror for examining an individual’s behavior; through the particular dyad of the two people, you discover your own deficiencies.
For instance, when I was first married to my first husband, our very first grocery shopping trips revealed some notable issues for me. When we got home, I waited until he was out of the room, then I proceeded to hide certain foods, squirreling away pretzels or cans of favorite soup. When he found the stash by accident and asked me about it, I realized that I was hiding food because I had learned as a child that if you don’t hide food from your three ravenous older brothers, it disappeared. My male siblings set upon grocery bags like locusts on a ripe crop of wheat.
My first husband was stunned that I had developed such habits. Although he was raised in a poor country in a family of eight siblings, he had never experienced such competition for food.
This particular behavior is not something anyone outside my marriage would have observed. No one besides my first husband–and then Tim, when I told him about it when we started grocery shopping together–would ever know that I did this. Occasionally, I will still hide things, only to happen upon them months later. Oh, right. Pretzels from July.
In the Asperger’s diagnosis, we’ve discovered the best explanation for Tim’s particular set of behaviors. Other possible diagnoses–and their treatments–matched some symptoms but left others untouched. After 20 years of trying to force his very square peg into a tiny circular hole, we *finally* see things clearly.
But here’s the thing; nobody outside our household knows what we’re dealing with. That’s true for my marriage and for everyone else’s. Whether my husband seems “normal” or your husband seems like a real asshole, there’s no way either of us knows what we’re truly dealing with. Sometimes, like when I was first married at 20, we don’t even know ourselves; it takes being in those naked spaces where we can’t hide anymore to find out what we’re made of, who we are, and how we behave toward the people we choose to live with.
For the faction of people skeptical about Asperger’s diagnoses in general, and Tim’s in particular, besides the fact that your skepticism doesn’t change the facts, I can offer only this; if the treatment plan we follow helps the symptoms, does it MATTER what we call the diagnosis?
My cluster headaches don’t give two shits what they’re called, as long as you lay some ice packs on them and put me in a dark room. Tim’s diagnosis and our function as a couple are helped by techniques developed for people with Asperger’s.
It walks like a duck, quacks like a duck, looks like a duck. It’s a damned duck.
NOTE: The preferred term for this diagnosis, and the one we use more commonly now, is “autism spectrum disorder” or ASD. Asperger’s has connection to a Nazi researcher, so we have eliminated it from our conversations.