When following popular media coverage, or even the statements of some professionals, the average person could be forgiven for believing that Asperger's is "just" a social disability. But defining it in these terms misses some very real issues faced by many on the spectrum. Take, for example, problems with pain perception and body awareness.
Learning about Asperger's has been, for me, a journey. I have written before that, when it comes to Asperger's, I often feel that the "little things" are the things that stand out the most. One of the defining moments along my journey was when I came across a short section in Dr. Tony Attwood's book "The Complete Guide to Asperger's Syndrome" entitled "The Perception of Pain and Temperature."
Dr. Attwood wrote:
"The child or adult with Asperger's Syndrome may appear very stoic, and not flinch or show distress in response to levels of pain that others would consider unbearable. The child's attention can be drawn to a bruise or a cut but the child can't remember how it happened. Splinters may be removed without concern, hot drinks consumed without distress. On hot days warm clothing may be worn, or on freezing winter days the person may insist on continuing to wear summer clothes. It is as if he or she had an idiosyncratic internal thermostat.
There can be a hypo- and hypersensitivity to pain (Bromly et al. 2004). The low threshold for some types of pain and discomfort can be a frequent source of distress for the child whose reaction can be judged by peers as being a ‘cry baby.' However, children with Asperger's syndrome are more likely to be hypo- than hypersensitive to pain."
When I saw this, I remember thinking, "Whoah! Wait...that's related, too?" It rang shockingly true for me.
Dr. Attwood continued:
"One of the most worrying aspects for parents is how to detect when the child is in chronic pain and needs medical help. Ear infections or appendicitis may progress to a dangerous level before being detected."
This brought back memories. One evening, when I was a Freshman in high school, I excused myself from the dinner table to tackle my history homework, leaving mother and brother downstairs chatting. I curled up on my bed, balancing the book on my knees, and got to work. Before long, though, I found myself struggling. I couldn't focus. I kept reading the same passage over and over - but I had no idea what I had read. What was going on?
I marshaled my resources and tried again, but before long I again found myself struggling and again I wondered what was wrong. I realized then that I was sweating. "Oh," I thought, "It must be because it's so hot in here." I wiped the sweat off my forehead, and got back to work.
But it didn't get better. In fact, it got worse. Suddenly, I was screaming. A massive wallop of pain had appeared out of nowhere. Overwhelmed, screaming was all I could do.
Panicked, my mother ran upstairs and into my room. "What's going on?"
Doubled over, I grated out, "Something's wrong."
"Do you need to go to the hospital?," she responded.
I baldly answered, "Yes."
Fortunately, we lived less than ten minutes away from the nearest major hospital, and my mother got me there in record time. Within minutes of arriving at the hospital, I was being rushed into surgery for an emergency appendectomy.
Afterward, my surgeon commended my mother for her quick thinking. "If you had waited," he said, "It probably would have been too late. It was really ‘ready to go' - in fact, I think this is the worst case that I've seen, that didn't result in a rupture."
My mother would later tell me that she knew something was terribly wrong from the moment she heard me screaming. "You'd never screamed like that," she said. This was something, considering that by this point in my life, I had undergone several surgeries, and been hit by a car.
When I look back on that day, I realize that the signs had been there for quite some time. I had been feeling "off" for hours before the crisis hit -- but I could not classify it. I certainly wouldn't have called it pain. In fact the impression I have, in memory, is of a vague "coldness" in my stomach.
Why is it that it took my body so long to register that pain? Was it novelty? Different wiring? Signals getting lost? Or was it, as some on the spectrum have speculated, a matter of focus? Was I able to "ignore it away" -- until the pain simply overwhelmed my defenses?
It's hard to know -- but from years of experiences like that I have learned to be vigilant. Too often, of course, that gets misjudged as neuroticism, but in my mind it's simply a reasonable reaction to dealing with a neurology that's somewhat erratic in the detection of pain.
I very much identified with a woman Dr. Attwood quoted who said:
"My response to pain and temperature seems to be similar to my response to trivial or traumatic events. At low levels of stimulation the response is exaggerated, but at higher levels the senses seem to shut down and I can function better than normal in most instances. A trivial event can quite dramatically hamper my ability to function, but when faced with trauma, I can think logically and act calmly and efficiently when others would panic under the same situation."
A few years before the appendicitis scare, I was hit by a pickup truck on the way home from school. When I look back on the experience -- my most prominent memories are not of physical pain and trauma, but of bemusement at the behavior of the medical personnel and people at the scene.
In the first few moments after the impact, I felt pain -- then it dissipated. In later years, I would describe it as being similar to bashing your shin or funny bone...in fact it was so similar, that I attempted to handle it the same way.
When my Gym teacher, one of the first adults on the scene, arrived at my side, she was appalled to find me attempting to stand. Embarrassed to be the center of attention, I just wanted to slink off and lick my wounds in private -- but I was confused. Why should getting up be so hard?
My teacher could see what I, laying face down in the road, could not -- these efforts were fruitless. Having taken the brunt of the impact with the bumper (and running board) of the truck, my left leg lay behind me, folded upon itself in a grossly unnatural fashion. Trying to stand on it would be like standing on a limp noodle.
She knelt next to me, lay her hand on my shoulder, then said calmly,"No, Lynne. You need to stay still." Then, knowing that I was the kind of kid that needed a "why" for every "do," she appealed to my logic. "We don't know the extent of your injuries yet. If you move, you could hurt yourself further."
This silenced my protests of, "No, I'm fine. If I could just get up..."
Because she knew me, my interactions with my teacher were less confusing -- she knew how to relate to me in a way that I would understand. Not so when the paramedics arrived -- they reacted to me as they would any other injured young girl. To our mutual confusion.
The woman who took the lead was clearly a very empathetic person -- and her "mother bear" tendencies came out at the sight of my injuries. She looked at the blood and broken bones, and came to the conclusion that I must be in massive pain. She refused to believe me when I said I wasn't.
"It's alright," she kept saying, "You can cry. I won't think badly of you." Of course, I was confused. Why would I cry if I wasn't feeling any pain? It made little sense to me.
But she read this differently: "Oh, you're so brave!" She said, tucking a teddy bear under my arm and calling over the seat to her partner: "She must be in so much pain, and she doesn't even cry!" This made her more determined...she cursed rude drivers, and rough roads...determined to take on anything that would cause me further pain.
I kept protesting that I was fine...that I felt no pain...but that just didn't compute. Not to this woman, and not to anyone I met at the hospital. They were shocked when I informed them that I "felt no different" after they dosed me with morphine.
For my part, I couldn't understand why they continued to believe that I was lying. A bit of a fanatic about truth, I actually began to feel a little bit insulted. Why did they think I was a liar? If I really was in pain, wouldn't I tell them so that they could fix it?
Of all my memories -- there's only one that deals with pain. But it was a different type of pain.
In the first few moments after the impact, when I hit the pavement, there was a brief period of time when my entire world was made up of sound. During that time, I heard something I will never forget.
There was a screech of tires, the sound of a door opening, and running feet. Then a scream...like nothing I've ever heard. Guttural. Primal. Awful.
There was a scuffling of feet, as if someone was desperately trying to get to me, but was being held back by several others. The voice continued. "Oh, my God!" It broke on a sob. "Did I kill her?!!!"
The scuffling intensified. "Please!!!! Oh, God! Did I kill her?!!!" There were murmurs and voices, as onlookers attempted to calm him down. Soon after that, the activity around me started in earnest, and I lost the thread.
In all the years since, I've never forgotten that voice.
I'm a person who struggles to tell seriousness from sarcasm, and apathy from anger...but this was unmistakeable. I felt it viscerally, at the deepest level. Just the thought of it gives me chills. If I think about it too long, I cry.
My father, as most parents would be, was furious at this young man. After all, his impetuous decision to run a red light came very close to killing me. It's hard not to think of what could have happened.
I feel I was lucky to have escaped with as little damage as I did. Even so, for months I was unable to do the most basic things without assistance. Bathing. Going to the bathroom. It was almost six months before I could walk on my own two feet without support. I still carry the scars, aches and pains today.
But unlike my father, I couldn't drum up much anger toward the young man. From what I had heard in those first few minutes, I was convinced that for whatever damage his mistake had caused my body, it did far worse things to his soul.