Photo Gaetan Lee (downloaded from Wikipedia Commons)
You might not think it because I present as fairly normal to most people I encounter on a day to day basis. But the truth is that I often feel like a foreigner in a strange land. Or perhaps on a strange planet. I’ve studied the language long enough to order a meal or exchange pleasantries with the locals. With practice I’ve learned to carry out a fairly extensive conversation when necessary—and I generally don’t mind doing so. Yet I’m still not truly fluent in the language. Everything I say has to be scripted in real time, every bit of dialog translated back and forth in my head so that I can process it. None of this is evident from the outside—which is why Autism/Asperger’s is often referred to as an “invisible disability.” And this invisibility is why I’ve learned not to be astonished when someone tells me I “present too well” to be on the Autism Spectrum or have a disability; that I shouldn’t need any sort of accommodations because I’m “a sophisticated guy” (yes, these things have actually been said to me.)
Despite my “normal” outward appearance, there is actually a huge overhead of cognitive work taking place behind the scenes during every waking moment of my day. It’s hard for most neurotypicals to comprehend what this is like because the communication functions we’re talking about happen automatically for them without much thought. By comparison, my brain is in constant overdrive trying to figure out the right thing to say, work out what other people might be thinking or feeling, and identify my own feelings in real-time. By the end of the day, or after a particularly intense meeting, I am exhausted and drained—both physically and mentally. During prolonged, emotionally charged exchanges, I even reach a point occasionally where I literally can no longer understand what the other person is saying. This particular expression of Autism is especially scary and disorienting for me when it happens. The other person’s words stop making any sense to me and I have to abruptly halt the dialog.
When mastering a foreign language, one typically gains fluency over time. As proficiency improves, the cognitive overhead of translating and processing diminishes and eventually goes away altogether. Unfortunately, the same is not true of Autism. Those of us on the Autism Spectrum learn to emulate the behavior of others; we memorize expected responses to certain scenarios; and we apply past experience to figure out what’s appropriate or inappropriate to say. Those of us with a high IQ become so adept at these compensations that only those closest to us would suspect anything is “different.” So when we inevitably mis-step in our interactions with others on occasion, it is assumed to be an attitude or behavioral problem, rather than recognized as a communication problem. Regardless, at no point does this process ever become fluid or fluent—it’s only a form of compensating for those aspects of our neurology that work differently from the general population around us. For even the most “high-functioning” among us, figuring out the thoughts, feelings, and perspectives of others is still a deliberate, conscious process instead of an autonomic one.
All of this is because Autism in all its forms is characterized by a fundamental impairment in reciprocal social interaction and communication, regardless of age or level of function. This impairment results from a deficit in theory of mind—the ability to automatically attribute mental states to the self and others. Research shows that those of us with Asperger’s/High-Functioning Autism are particularly adept at applying abstract rules to overcome this deficit. However, such abstract reasoning doesn’t help with interpreting non-verbal cues. This means that our ability to compensate makes our Autistic traits are far less “noticeable” but then we unexpectedly stumble when the situation calls for an ability to read others that exceeds what’s in our toolset.
As we grow older with an Autism Spectrum Disorder, we expand our repertoire of tools to compensate for our significant underlying communication deficits. But we’re only becoming more proficient at compensating, not more proficient at interacting with others. Autism is hard-wired in the structure of our brains. We can certainly learn and adapt, but Autism is a lifelong condition that does not substantially change or “get better” with time. (In a future post, I’d like to talk about the ways in which modern neuroimaging technology has helped us make huge leaps forward in our understanding of the Autistic brain.)
So if you find me exhausted and ready for bed by 9:00pm, or needing to leave the office for a little while after a long meeting, please understand that my brain is most likely on overload and needs rest. If I seem to be having a perfectly normal conversation and suddenly say something completely inappropriate, please understand that my normal compensation tools may have temporarily failed me and I need help getting back on track. If you think I may not have picked up what you’re feeling, you’re probably right—and it’s fine if you just tell me plainly what I need to know. But above all, please remember that I’m a legal alien living in a foreign world. No matter how hard I try, I’m not always going to get it right. I’m okay with that, and I hope you can be too.