More Hank Than Max: Asperger’s, Diagnosis, and Disclosure
(A one-page edit of a five-part series, for those of you who like things tidy.)
The Challenge to Identity
Recognition. Resonance. Assessment. Diagnosis. Disclosure. These, it seems, are steps many Aspies, if not most, take on their journeys of discovery. I know I’ve taken, and am still taking, every one of them. And for myself, taking these steps has meant rewriting large chunks of my identity and self-perception. That has been challenging, to say the least.
But then when have I ever just said the least?
If identity is an onion (and of course it is), then I’d like to peel away a few layers and see what I find within. The first layer is the one you see when you look at the onion from the outside.
As I’ve contemplated “coming out,” I’ve wondered about how the “news” would be received. Would I be believed? Accepted? Ridiculed? After all, I thought, I don’t “look” Aspie, which is to say that, from what I could see, I wasn’t a strong match for the common cultural perceptions or stereotypes associated with Asperger’s Syndrome. From my point of view, I just look like I’ve always looked, like “a regular Joe,” like “one of us.” To some, perhaps, my claiming to be Aspie might seem as foolish as claiming to be Lithuanian, or short, or a gerbil. (And no, I don’t hold there to be anything wrong with either Lithuanians, short people, or gerbils. I do, however, have some rather unkind thoughts about hamsters. But then, who doesn’t?)
For those who’ve watched the NBC series Parenthood, I’m way more Hank than Max. That’s how it seems. Max, who we watched grow from child to adolescent as the series progressed, was the more obvious, stereotypical television Aspie: unable to hold eye contact, fairly obsessive in his special interests, at times rude™ or even cold™ (some might say), and prone to “acting out.” Hank, on the other hand, was a middle-aged adult with an ex-wife and a teenage daughter. He was quiet, socially awkward, and somewhat flat in terms of affect, but mostly lacked Max’s more obvious traits. He was quirky, you might say. A bit odd. Rather lost in the realm of human relationship. But not obvious. Just a regular Joe.
And that’s me. Hank was me. A bit odd? Sure, I’ll accept that. Socially inept? Check. Distant? Aloof? Difficult to know? Prone to anxiety? Eccentric in my interests and beliefs? All that. But I’m no more obvious than Hank was, am I? I mean, I’ve passed for “regular Joe” my entire life, haven’t I? What the heck could I be talking about with this Aspie thing?
That’s what I could imagine people saying. That’s what I said to myself. I’m just me. The same me I’ve always been. How could I expect others to accept something even I had doubts about?
But the relief I felt, from both recognition and resonance, was strong and real. The assessments all pointed in the same direction. The books, the blogs, and Sally – who has always seen me more fully than any other living soul – all argued the case. And diagnosis by professionals confirmed it: the story of Asperger’s was a fair and accurate tale to tell about myself.
And here’s why: It turns out that I’m only really Hank on the outside. Inside, I’m way more Max than even I ever realized, and way more Max than I ever let most people see.
Do I Look Aspie to You?
Now, Sally has argued that I actually exhibit many more Aspie traits than I think I do. She is, as you may know, a professional observer of human beings, having spent most of her adult life as a talented and skilled therapist, so it has made sense to me to listen to her about this. And I will admit that, in the past two years, now that I’ve been looking, I have begun to notice for myself (and actually feel) the evidence for her argument, not only in my daily habits and current interactions with others, but in remembered moments from my past, as I’ve leafed through the pages of my own life story in search of myself.
Small bits of evidence are as immediate as this last weekend, when we took a short trip. I butted into a conversation between people I do not know because I overheard them talking and had a corrective piece of information I thought they needed to have. (No, I’m sorry, you’re wrong. Tim Curry is not dead. He just signed on as the Criminologist in the Rocky Horror remake!) I had to turn away and look mostly at Sally during much of the meeting we’d traveled to attend, because I found the eye contact with the man with whom we were meeting to be discomfiting and confusing. Before heading home, I said goodbye to Sally’s children with little more than a perfunctory, from a distance, remembered-at-the-last-second wave of the hand instead of the more appropriate and traditional hugs and handshakes. And it was only later, thinking upon these things, that I realized than any or all of these actions might have seemed rather odd, or worse, to the people with whom I was interacting.
And then there’s the fact that I’m largely estranged from my family of origin, including my own children. And there’s the way I acted out my unspeakable frustrations, for years, in that family system. And my predilection for researching, talking about, and writing about such “off the normal curve” special interests™ as the collapse of civilization, lost ancient societies, UFOs and aliens, paradoxes and paradigms, mind-challenging philosophies and deeply entrenched conspiracies. (And I suppose we can now add Asperger’s itself to that list.) And the fact that, on that rare occasion that I do attend some sort of social gathering (usually at Sally’s strong suggestion or invitation), unless I know the people well, (and there are only a few of them), I either say very little, find some place to hide, or speak mostly to the dogs and cats that live there. And the fact that, apart from Sally, I have almost no “close friends.”
But other than that, no, I don’t “look Aspie” at all.
Which is to say, perhaps, that, given the insanities of the world in which we live, and the current state of human beings living in the dim light cast by the last glowing embers of the Age of Exuberance, and the fact that I simply feel like “me,” and that “me” feels “right” and “normal,” none of these “outward signs,” in and of themselves, were enough to convince me.
Which is probably why the trail up the slope of Recognition and Resonance to the high ridge of Assessment and the peak of Diagnosis (from the Greek, meaning to know as apart from, to discern) took as long to traverse as it did. That and the fact that, until 1992, there was no such thing as an “Asperger’s Diagnosis” at all. And the fact that Asperger’s is a syndrome which lies on a spectrum, which means that “how it looks” will vary wildly from person to person, bringing the lie to any and all attempts to stereotype it.
Yet the stereotypes are out there, obscuring the subtleties and variations of truth and experience. Being “More Hank Than Max,” the truth of my own experience was more difficult for me to discern. And frankly, that difficulty was what I’d been trying to achieve. Though I was not aware of it at the time, in a very real way “Hank” was exactly who I’d created myself to be.
The Hidden Syndrome
I’ve seen Asperger’s referred to as hidden: the hidden disability, the hidden autism, the hidden syndrome. The word “hidden” is used because many so-called “high functioning Aspies/Autistics” (HFA’s) have the seeming superpower of being able to fit so easily into “neurotypical” society as to go unseen, like leopards in the jungle, say, or “aliens among us.” So “normal” do some HFA’s appear to be to the people around them that, upon their decision to disclose their diagnosis, they are greeted with disbelief, denial, and derision.
Which sounds like fun, right? I mean, who doesn’t like having their reality denied by others? Especially when it feels like a great risk to share that reality in the first place.
We can, of course, blame this denial on the Asperger’s stereotypes in operation. If the stereotype says that Asperger’s looks like Max, and I don’t look like Max, then I don’t have Asperger’s. It’s a simple equation. An easy matter of Venn diagrams. And the human mind likes things easy, as was so beautifully explicated in Daniel Kahneman’s Thinking, Fast and Slow. The stereotypes operate for a reason, I think, so we need not wonder that they exist. If the diagnosis of Asperger’s or Autism is a claim to differences, then it only makes sense that people will highlight the most obvious, observable differences and turn them into a “type,” something that they can wrap their minds around. But since the type doesn’t do justice to the full reality, those who seek the truth will need to see beyond it, and it can take a great deal of time, energy, and education to displace such easy beliefs with more nuanced reality.
But it’s more than just a matter of falling outside the stereotypes, I think. At least for me. Truth be told, I worked hard to hide. I embraced my outer Hank and turned my back on my inner Max. I chose to fit in as best I could, and painted my fur with leopard spots to blend in with the sun-dappled foliage of neurotypical culture. I kept myself hidden, even from myself.
Until I failed, that is. Until I stopped.
That my “inner Max” went into hiding is completely understandable, of course. “Sticking out” can be painful and frightening. “Fitting in” can feel safe and comes with rewards. Ask The Ugly Duckling. Ask Jonathan Livingston Seagull. Even the birds know this.
I don’t really remember how it started, but there is a telling piece of archaeological evidence that has helped me, along with other bits of data, to connect together the skeleton of a story. In the late 90s, while putting together a scrapbook of my life for a Landmark Education program, I uncovered an ancient relic: my kindergarten report card. Written on the back was a note from my teacher, explaining that while Timmy was a joy to have in class, he was extremely sensitive. She was working to correct this, she said, as I would be much happier were I not so easily affected.
Looking back over my life now, I can imagine that extremely sensitive Timmy, and the pressures on him to hide. And from this current high vantage point on my life’s trail, I can see how successful he was at it. He was extremely smart, a skilled and talented observer gifted at pattern recognition. And he had two older brothers modeling possible paths for him to take – the “good boy” and “the rebel.” He was no dummy, and could see which side of that particular piece of bread was getting buttered. He followed the good boy.
He also had the good fortune of growing up in a rather idyllic situation. He spent his formative years in the rural Michigan countryside, surrounded by fields and woodlands and streams and farm animals on the one hand, and by a large extended farming family on the other. And he attended a one-room schoolhouse of maybe twenty students total, where his tiny cohort of four or five advanced together from grade to grade with the same teacher. When he needed solitude, there were places to go to get away. When he needed help or understanding, there were many relatives from whom he could choose. If he had quirks or oddities or sensitivities, they were such old news that they scarcely registered.
He found a way to be okay, this lost little alien walking amongst them. He took on understanding the ways of human beings as an anthropological research project, and learned to mimic their gestures, speak their languages, and participate in their rites and celebrations. The Max part of him hid away as best he could, sitting so silently under the staircase that even he didn’t know he was there. The Hank part of him he showed to the world. Because he lacked, or had learned to hide, some of the more obvious outward traits of an Aspie, he fit in quite well, rarely raising suspicions.
And all it cost him was that he had to almost totally shut himself off from his true nature for most of his life.
Beneath the outer layers of “how I look” is a hidden layer, and it’s easy enough to understand the reasons for why I concealed it. But what is that layer, exactly? What is it that stays mostly hidden? What is my Asperger’s?
Sometimes I think of Asperger’s as a story I tell about myself, a story that explains and brings meaning and provides both relief and guidance. The story came to me over two years ago, a “gift from the gods” which descended upon me in the utter darkness of winter, at a time when my own internal season aligned with the bleak, dim, muddy, icy outer world through which I walked. The story of Asperger’s shed light and warmth on my soul, and helped me to understand why my life had gone as it had, why it was going how it was going, and why so much of it felt as difficult and challenging and confusing as it did.
It helped me to notice my actual experience in the world. I was now allowed to notice it. And noticing myself inside of the story of Asperger’s allowed me to allow myself, to let me be who I was, to embrace myself, to cherish myself, just as Sally had always allowed and embraced and cherished who I was.
I noticed how my days went, how I followed my many rituals and routines with almost panicked urgency, lest they be interrupted or thwarted, so desperately did I need their magic.
I noticed how much time I spent “on high alert,” and the energy it took to maintain my outer cordon of emotional and psychological fencing and razor wire, and how spent I felt at day’s end.
I noticed the many sensory stimuli that poked me, scraped me, slimed me, pricked me, blinded me, pushed me, pestered me, revolted me, and teased me to the point of exhaustion; the stray lights at the corners of my eye, the cacophony of restaurants, the irritations of fabric, the confinements of lotions and oils, the screaming wrongness of mouth sounds.
I noticed how thoroughly I discount the world of “others,” how completely the world is “all about me,” how much I miss, how much I disregard, how much I fail to comprehend, how poorly I listen, how much I presume.
I noticed how fierce anxiety and chronic worry wash across my being like ocean waves, how they fill me, dampen me, chill me, burden me, depositing me drained and limp on the shoreline of my life.
Suddenly it all made sense. My social terror and awkwardness. My abject fear of the telephone. My uncommon fascinations and lifelong preoccupations. My random squeamishness. My constant assessment of right and wrong. My flapping hands and twitching face and tapping feet. My stilted affect and truncated feelings. My controlling nature. My love of sameness and my fear of change. My lack of close friends. My inability to grok such human words as “love” and “proud” and “missing you” and “friendship” and “connection” in the way that others seemed to be using them.
I could look back over my life and begin to understand the what and why of who and how I had been. How rude I had sometimes acted. How thoughtless. How careless. How bored I had often felt. How trapped. How lost. How distant I may have seemed to those around me. How aloof. How taciturn. How difficult to understand. How I had needs for quiet and solitude and stimulation and connection that were not the same as for others around me. How much pain that caused me. And how unable I was to even know what those needs were, let alone communicate them to the people around me in such a way that the needs might be met.
I began to understand.
And in understanding, warmed by the glow of insight from the story of Asperger’s, I began to allow.
That little Timmy, that little Max, that sensitive little alien who had hidden himself under the stairs in order to keep from being hurt, completed a huge portion of the journey back to himself, a journey that he’d begun many years before. The story of Asperger’s threw fresh sunlight across his path, and brought meaning and explanation and compassion and a sense of almost epic accomplishment to his journey. Under the light of a fresh dawning, he was able to climb to the next high peak.
And here he is.
And here I am.
And the view here is marvelous.
To riff off the great John Lennon, I am Max, and Hank is me, and we are we, and we are all together.
And we very much like ourselves now.
Because, now, we are allowed to.
I’d been wearing the story of Asperger’s for a couple of years when I finally decided, prompted by the work of Michael John Carley, to seek a formal diagnosis. I’d been working with my wonderful guru, who is wise in the ways of the autism spectrum. I’d been reading and thinking and writing. And daily, I’d been processing it with Sally, the other half of my brain.
Yet when the formal diagnosis came. When the pdf arrived in the email. When I finally opened it, and forced myself to read it. When it hit me. It really hit me. A gut punch. A heavy club. A speeding truck. And I sobbed and railed, so stunned was I to see it all put together in one place, and to view it through the eyes of an outsider, a professional with her many assessment tools and more objective viewpoint. I cried. For that young Timmy, the rabbit in the open field. For that lost inner Max, who hid under the stairs. For that outer Hank, who strove so valiantly to hold it all together. I cried, doubled over, curled up. I sobbed.
And then I stopped. Because that’s the nature of truth, I think. It can slap you upside the head, but it can also set you free. And much of the time, it does both at the same time. With two years of processing under my belt, and now a formal confirmation, I could step fully into the relief of explanation and the light of insight. I began to feel, surprisingly enough, credentialed. With a Diagnosis for a Diploma, I could more fully join the ranks of those who take themselves seriously. Taking myself seriously, I could begin to speak.
Again: here I am.
But the journey is far from finished. Don’t get me wrong: insight and understanding are great. Explanatory stories and self love are wonderful. But none of these will make Asperger’s go away. It’s neurology, after all. It’s wiring. It’s being. It’s a thing of different needs, different abilities, and different limitations. It doesn’t just disappear in a puff of logic when a light is shined upon it.
Over and over, in the darkest days of my struggling, I would ask Sally, “Why am I not getting better?” All the emotional work I’d been doing. All the psychological sophistication I’d gained through study and observation and training. All the allowing that Sally had shined upon me. But still I’d get lost, stumble, and fall. Still I failed to meet her on the plain of empathy. Still I remained on alert, marinating in anxiety, awkwardness, and overwhelm. Still I could find only stray bits of “happy.”
How fascinating, to finally learn how much of my struggle was a matter of accepting and providing for different needs, rather than the healing of old wounds and the correction of broken reactions. I have trauma and reactivity a-plenty, of course. But those reactions can be teased apart from the suite of more fundamental characteristics with which I was born. It’s in accounting for those different needs, I think, that my new freedom will most fully blossom.
I remain on the human spectrum first and foremost. My “differences,” exposed to the light of day and examined honestly, are really differences of intensity or degree, matters of quantity rather than quality. And truth be told, I’m glad to have them. They make me who I am, and I’m very happy, to be who I am, pains and challenges and all. No one else gets to observe the Cosmos from my particular vantage point. Only I get to do that. It’s a fascinating view from here. And quite the responsibility, working, as I do, for the great Mind at Large.
And, truth be told, I’m envious of the television Max. His different way of being, more “extreme” or “atypical” than my own, gave him no choice but to express his true self in the world. Whereas I, seasoned with a lighter “dash of autism,” could hide my inner Max and present a more “acceptable” version of myself to the world. But it has cost me dearly, this denial of self. And I wonder sometimes, how it might feel, to let my inner Max show in the presence of other people, to reveal, in all its awkward, stilted, confused, needy glory, the truth of my inner experience.
That would be a difficult step to take. I’ve spent years training those around me to know me in a certain way: as “one of us,” as a “regular Joe,” as somebody not all that different from them. How can I change that now? What would happen, were I to acknowledge the costs I sometimes feel when I consciously maintain eye contact, and just look away as much as I wish I could? What would happen if I gave more social, face-to-face voice to the constant stream of thoughts, obsessions, worries, judgments, and confusions that now only Sally hears? What would people think, should I more openly demand my need for rituals and routines, or ask that they make adjustments to ease my sensory stresses, or share with them the full outlier truth of my emotional experience?
What would happen were I to let myself melt down on the outside in a way that truly reflects the meltdown going on inside?
What would happen, were I to finally become one person, Tim and Timmy and Max and Hank, all integrated together and alive in the world, capable and intelligent and limited and vulnerable and different, all at the same time?
The answer is: I don’t really know.
But I suspect that, as times moves forward, and as I take my hesitant, rabbity, yet needful steps out from under the staircase, I’m going to find out.