Month: October 2018

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.

My wife is the most amazing person I know. “Nobody should feel bad for Sam,” a close friend once said of my marriage. He’s right. Erica is one of the most kind, loving, and generous people I’ve ever encountered, and I am incredibly thankful for the happenstance that brought us together. Among Erica’s many qualities, she has an EQ that’s at least as high as her IQ, placing our union squarely in neurodiverse territory. That makes for a number of unique challenges over and above what every marriage entails. But we make it work, one day at a time. I believe there are three factors that get us through the difficult moments: 1.) We have both learned to be flexible in our expectations based on our respective neurologies; 2.) We are equally committed to constantly improving ourselves and our partnership, learning and adapting as we go; and 3.) We deeply love each other and, even when everything else seems to go awry, we are truly committed to making our relationship work.

Erica and I have both learned to be flexible in our expectations about marriage and partnership. Unfortunately, the burden of flexibility often falls disproportionately to the neurotypical partner and we are no exception. No matter how much the ASD partner wants to fulfill every expectation their partner has, the reality is that it’s often difficult to do so. For example, Erica has certain expectations about how her husband should respond emotionally in moments when she is anxious or stressed. Unfortunately, emotional reciprocity is an inherent area of weakness for those on the Autism Spectrum. We’re simply not wired for it (PET studies have shown that the Autistic brain processes emotion in the logic center rather than the amygdala.) It takes me a while to process and  communicate my feelings, and that delay can be easily misinterpreted as a lack of support. So Erica has had to learn that I show my emotions in different ways, and that she has to translate between my emotional expressions and hers. Meanwhile, I’ve had to learn that my partner doesn’t know what’s going on inside my head at all times. (Like most Aspergians, I initially assume that other people automatically know what I’m thinking.) So I’ve learned that I need to tell her what I’m thinking instead of becoming snippy when she doesn’t figure it out for herself.

This makes a good segue to my next point—the importance of commitment to constantly learning, improving, and adapting. As an Aspergian, I often forget that I still have a lot to learn about the world. (By default, I usually assume I’m right and I already know what I need to know—obviously far from true.) Erica constantly challenges me to do better with the things I’m not especially good at (communication, emotional reciprocity, emotional regulation, etc.) She also works hard herself to learn from our missteps so that she can communicate better with me in terms I understand and can respond to. For example, she’s learned that I “time out” at a certain point in conversations and if the subject is important, we may need to table it and come back to it later. I’ve meanwhile learned that I need to be responsible for making sure that actually happens. I’ve also learned that there are ways I can make her feel heard and validated even if I can’t immediately show the specific support she’s looking for. That goes a long way toward bridging the gap between our respective operating systems. I may not be able to promptly demonstrate the emotional response she expects me to, but I can employ alternative tools so that my wife gets the support she’s looking for from her husband.

All of this is work. It can be exhausting at times, and there are moments when we question why we’re doing it. But Erica is the love of my life—I can’t picture being with anyone else; she feels the same. We are deeply committed to each other, our family, and our life together. In the moments when everything seems to come unraveled, this love and commitment is what sustains us and it’s the ground we come back to. When your basic parameter is that failure is not an option, it focuses your energy on finding real solutions to the problems you’re facing.

Being together means a lot of compromise and a lot of negotiation—for both of us, but perhaps most of all for my neurotypical partner whose brain is more flexible and adaptable than mine. The situation is inherently unfair. As an Aspergian, I struggle every day to function in a world that wouldn’t be a problem for me if everyone’s brains were wired like mine. Meanwhile Erica must learn to interact daily with a person who’s communication style and emotional responses are different from everything she’s come to expect from a neurotypical world. This unfairness is compounded by the reality that it’s often easier for the neurotypical to adapt than the Aspergian. So while we both put in the work, a disproportionate share of that burden inevitably falls to the neurotypical partner.  If you insist on keeping track and ensuring you meet exactly in the middle, you will lose every time. It’s been said that the only way to win is to not play the game; I say the only way to win is to not keep score. Or if you must keep score, focus on the effort put in rather than the results that are obtained.

Life on the Autism Spectrum can be, for many, a fairly lonely existence. Autism makes it inherently difficult to engage with others emotionally, let alone communicate and build enduring connections. Even when we’re surrounded by other people, Autism can have an isolating effect because it’s difficult for us to understand and be understood by others. Many parents of children with Autism worry whether their son or daughter will ever be able to find love, let alone a long-term partnership. So while acknowledging that my situation is more the exception than the rule, I’d like to debunk the myth that people with ASD’s can’t have happy, meaningful relationships. Autism means our brains work differently; it doesn’t mean we don’t want love, and it doesn’t mean that we are incapable of finding it. (NOTE: PBS has a fantastic documentary on this subject, Autism In Love, that I highly recommend.)

Erica is the perfect partner for me, and I’m apparently at least “perfect enough” for her. She loves me, supports me, and makes me want to be the best husband, partner, and father I can be. That’s not to say we don’t face constant challenges. What sees us through in the end is our shared love, devotion, and a commitment to constantly improve ourselves and our relationship.

That’s our story of finding love. Your individual mileage may vary.

My name is Sam and I am a 45-year old man living with Asperger’s Syndrome. Or to borrow a term from John Elder Robison, I am an Aspergian. This may come as a surprise to some long-time friends and acquaintances who didn’t know this about me. Then again, it might not. Either way, Asperger’s isn’t who I am. Who I am is a father, a husband, a provider, a friend, a companion. I am an emergency management professional and higher education executive. I’m a motorhead, a music lover, a carpenter, a hiker, and a home brewer. Asperger’s doesn’t define me—I define Asperger’s.

Discovering in 2012 that I have Asperger’s Syndrome (these days called “High-Functioning Autism”) certainly did explain a lot, unexpected as the news was. “Let’s put it this way… If you are in a room with 99 other people out of the general population, statistically you are likely to be smarter than 98 of them. On the other hand, you are also likely to be the most ill-equipped person in the room to handle that situation gracefully.” This was the neuropsychologist who provided my Asperger’s diagnosis after two exhaustive days of testing and evaluation, summarizing the basic implications of my Autism into digestible form. Very smart but socially awkward. High IQ, low EQ.

Of course, I’ve lived with this “High-Functioning Autism” my entire life. It’s the only existence I’ve ever known, the fundamental framework through which I perceive and interact with the world around me. Every experience of my lifetime has been informed by my Autism because it is the operating system through which I process everything I encounter. (I’m told that neurotypicals—those “normal” people without Autism—actually experience the world very differently than I do, but I find it difficult to wrap my brain around such a notion.)

As the parent of a child on the Autism Spectrum, I’ve learned that people have wildly varying levels of understanding regarding Autism Spectrum Disorders. This is in part because the Autism Spectrum encompasses such a wide range of presentations. When I tell someone I have Autism, they are often skeptical at best because I don’t meet their “Rainman” expectations. (Please note: If you drop a box of matches on the floor, I will have no idea how many are there.) And with people so often misunderstanding (or mis-assuming) what High-Functioning Autism means for me, I’ve become reluctant to share my diagnosis with others. But to understand me, you have to understand my Autism. So I’ve decided it’s time to “come out” as an Aspergian using this blog as a platform.

I will admit that my 2012 diagnosis took me by surprise. For the first 39 years of my existence I was of course aware I was more than a bit quirky, and certainly socially awkward. But I never thought of myself as having “a different operating system.” To the contrary, I always assumed everyone around me experiences the world the same way I do. True, I struggle with communication and social interaction while my peers handle such things far more adeptly. As a small child I would have major tantrums over a simple haircut (I couldn’t stand the sensation of scissors cutting through my hair—something most people can’t even feel. I still don’t like it to this day, though it doesn’t usually result in a meltdown any longer.) I have far more sensitive hearing than others, I hate putting anything like sunscreen on my skin, and certain types of lighting make my head throb. Meanwhile I always assumed that everyone else has the same type of visual/spacial cognitive abilities that I do—abilities that I now know I share with Temple Grandin and a surprising minority of others in the world.

Living with (and struggling with) the challenges of Autism can make it easy to lose sight of the many things I am to many people. Recently I’ve found myself more and more caught up in the challenges of my Autism. “Stuck” if you will, and allowing it to impact my work life, my family life, and how I fundamentally feel about myself. Moreover, I’ve allowed the attitudes of others about my Autism to further inform those feelings.

So I’ve challenged myself to start writing this blog as a means to get unstuck, to move forward again, and to share my journey with others. I believe these posts will help me be more mindful of the need to live better, manage my Autism better, and be a better citizen in the world. I also offer my story in hopes that it might be helpful and inspiring to others traveling along similar paths.