Now in my mid-forties, memories of my childhood are increasingly fleeting, lack detail, and nuance. I will say that my parents were strongly committed to family and sought to have a home full of love, respect, and discipline. Of course, no family is perfect. Mine was no different – Asperger’s saw to that.
I have always struggled to relate to my parents, siblings, or anyone else, to have any solid or strong emotional connection. This is not to claim that I do not have filial love, or that I am incapable of regard for others. It just seems that it is harder to develop and not as deep and abiding as I desire. And, it has pained me that I am unable to experience the full joy, satisfaction, and connection that others without Asperger’s Syndrome experience in their social relationships. I now know why.
A symptom of Asperger’s Syndrome (AS) and an observable trait common in a person with AS is a lack of empathy. A good primer on how empathy effects the capacity of people with AS to have healthy relationships, written from the perspective of AS loved ones, can be linked to here. I should mention that the reading is, well, blunt – as it should be given the emotional, psychological, and social ramifications to AS loved ones, friends, acquaintances, colleagues, classmates…you get the idea.
A common definition of empathy is the ability to understand and share the feelings of another. A richer description is offered at heartlessaspergers.com, “an awareness of someone else’s thoughts and feelings, mutual understanding, caring, and expression of that care.” Yeah, I struggled with that during my childhood but have gotten better over time – at least it’s what I tell myself and it does help me sleep. Which is to say that I have some semblance of comprehension that empathy is socially important and expected in certain social contexts.
An illustrative experience from childhood may help. I was young, don’t recall how old, at least five or six, I suppose. I was with my father as we arrived a little late to some kind of activity. My vague recollection is that the activity was a church function of some sort. There was a room designated for kids to play so that the adults could do whatever it is they do at churchy social functions. At our church, scarfing overly sugared red punch, jello creations, and hard crumbly cookies seemed the norm.
As my father and I approached the room, he said hello to and began speaking with an acquaintance, just short of the doorway. With steely determination and anticipated excitement I continued to march forward through the doorway. I recall noticing, a few feet inside the room, another child on the floor in distress. I recall stopping for a second or two, beside the child, looking at the child, feeling nothing, intuiting nothing, having a blank mind, unsure of what to do. Then, remembering I was there to play proceeding past the distressed child without any thought or concern.
I made it a few steps, before I heard that deep gravelly voice of fatherly authority ask me what I was doing. I replied going to play. My father asked me, with a healthy degree of incredulousness, whether or not I noticed the distressed child, who remained on the floor. I responded yes. He asked, why I hadn’t helped to pick them up. I responded, I didn’t know. His incredulity increased exponentially with that honest answer. He then proceeded to instruct me to assist the child and why doing so was important. All while shaking his head and expressing a small degree of exasperation to his amused acquaintance.
In hindsight, that was a formative experience in which my father instructed me how to act with empathy though, I had no conception of what counted as empathy. Only that certain contortions of the face combined with a loud wailing and watery substance being excreted from the eyes, should be understood by me as someone being in distress and requiring assistance of some type.
My childhood experience illustrates that people with AS must be taught – either through hard earned experience, in the family, and/or in therapy – to act in accordance with empathy. This, however, does not mean that the person with AS will develop empathy to the degree of non-AS people, though, anything is possible I suppose. An AS person is more likely to only develop sufficient understanding that empathy is a crucial social norm to which a person is obligated to exhibit in certain social contexts. This creates a problem of authenticity for people with AS.
While I was being evaluated by a neuropsychologist who specializes in assisting people with developmental disorders, he made a comment to me during one of our interviews that resonated. In my profession, teaching is a core duty and responsibility. My neuropsychologist asked me how I felt after teaching a class. I replied that I am mentally and emotionally exhausted, I tend to go home and crash in front of the TV on the couch. I noted that there is a persona I must adopt in order to teach well.
My neuropsychologist, smiled at that answer, as if another empirical confirmation had been received, the sort of satisfaction to which those few trained in scientific method may be able to relate. “That’s because you have to act like a teacher,” the neuropsychologist replied. The neuropsychologist continued by remarking that even trained actors often experience exhaustion when engaged in their role during a production. I experienced an epiphany.
Trained in a social and behavioral science discipline, all the analytical skill and rigorous training gained in graduate school turned inward in focused scrutiny. Relying on that skill and training as a social and behavioral scientist, I started making connections between different social strategies I employed in social situations and a cascade of knowledge began to flow.
As a late diagnosed AS, I had developed certain stimuli responses, behaviors, and social survival skills (however crude and unrefined) that were akin to acting a role in order to appear normal. In effect, hiding or camouflaging my AS. Most importantly, I learned how an incapacity for empathy was a root cause for developing acting skills unique to each social role in which I performed that were sufficient for surviving in an alien social world.
Sometimes my acting earned an Oscar, more commonly, I received a Razzie. Not for a lack of effort to comport myself in a manner I thought consistent with dynamic social norms in play in a given fluid social context. Lacking empathy means that a person with AS is incapable of intuiting dynamic social norms in a given fluid social context. The irony is that all social contexts are fluid, ever changing, in constant flux. There is no perfect analog on which I could rely to inform which social norms mattered and which did not in a given social context. Consequently, I was always committing (still do!) unintended social errors that bring me confusion and others a range of reactions. The end result being more social isolation by others and, as I get older, by choice.
I had/have sufficient social survival skills that could be applied with discipline, precision, and discrimination. The price for taking this approach was that I could not be my authentic self. Moreover, others born with empathy can easily recognize social inauthenticity, often describing me to my face and others as being cold, calculating, and too serious. I often felt caught in a paradox of social survival. To survive I had to be inauthentic, to be inauthentic was to threaten that survival. At my core, I knew that surviving is one thing, thriving is entirely different. I wanted to thrive. How?
Thriving in an alien world is the real challenge for a person with AS. Due to a lack of empathy, an AS person is more prone to committing social mistakes, exhibiting emotional outbursts when change is experienced in a routine, and adept, as a result, at alienating others. Empathy is an important emotional regulator that enables an individual to account for how an emotional outburst or thoughtless action may affect others. WARNING: obscure Star Trek: The Next Generation (1987-1994, Paramount Television Co.) reference follows.
A person with AS is like Commander Data when his emotion chip was initially turned on: a burst of uninhibited and unknowing emotional energy. That is to say, once Data’s emotion chip was activated, Data was incapable of recognizing which emotion he was feeling, why, and how to display (or not) that emotion in a socially appropriate manner. Current pharmaceutical treatments commonly prescribed to a person with AS have been developed for individuals suffering from Attention Deficit Hyperactivity Disorder (ADHD). My neuropsychologist mentioned that AS may be characterized as “ADHD on steroids.”
What ADHD pharmaceutical treatments do, in part, is “turn off” the AS emotion chip – at least for some – assisting in the management of Autism / AS meltdowns. In addition, an ADHD pharmaceutical or medication (meds for short), according my general practitioner and my son’s developmental pediatrician, can slow the thought process down by upwards of ten seconds. This additional time to think can be crucial for an AS person who struggles to think before emotionally bursting out a reaction. In short, the meds mellow my son and I as my wife / his mother describes.
That mellowing effect is crucial to filial relationships in a family experiencing AS across generations. I do worry, more as a parent, about possible side-effects of the ADHD medication my son and I are taking. In our case, my wife and I have decided that the benefits outweigh the risks. My wife is happier, less stressed, burdened, and more the girl I married as a result and I more the boy she saw the potential to become. Our son’s meltdowns have become less intense and long. He treats his younger sister better more consistently.
The ADHD meds, combined with weekly social skills group therapy, new parenting techniques learned in parent child interactive therapy, and loving our son regardless have helped him thrive more than I ever did as an undiagnosed AS child. Early intervention is key! This is not to say that we are unchallenged by AS.
Part of the challenge of having an AS child is the amount of energy and focus that child sucks up like a black hole in space. Often at the expense of siblings contributing to jealousy, resentment, and less self-worth for the sibling/s. In my next post, I’ll attempt to address this topic.