ASD: A Spectrum in the Rough

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“You have a heart tailored toward intimacy.” Still, over seven years later, the most potent words spoken to me about me, those. I caught them in the plexus, somewhere between a centrifugal deck and a hug that had the angular strength of overcompensating lack of confidence. God, I wanted them to be true – who doesn’t want intimacy? – but I’ve got a black belt in insecurity. You have a heart tailored towards intimacy. A heart, maybe. A brain, not so much.

Some select members of the psychiatric community voted to put Asperger’s on the autism spectrum in the most recent incarnation of the DSM , thus transforming the two persistently nebulous disorders into one allegedly clearer conglomerate: Autism Spectrum Disorder (ASD). The two fulcrums of any gamut – black/white, wave/particle, happy/sad – are generally banded naturally together in the first place by what they have in common and are held together by the hydrogenic tension of their differences. (We humans could learn a thing or two from this, yes?) Maybe the reason for such a formal merger between ASD and autism is because of a seemingly glaring similarity: both the cluster of behaviors first delimited by Hans Asperger in the 1940s and what is commonly conjured when you hear the word “autism” supposedly share this other common thing you hear about spectrumites: a marked “lack of empathy.”

Of course, what’s usually behind the formation of bigger and more unwieldy aggregates is money and the desire for control. Indeed, there is other suspicious activity in this field: the latest DSM also dropped the bereavement exclusion from the criteria for depression, unsurprisingly comorbid with ASD, thereby pathologizing grief in what I can only assume is an attempt to assuage the shameless pressure from indecent and single-focused pharmaceutical profiteers. And what clinicians observe as a lack of empathy is often compassion so overwhelming that it shuts you down, making you look uncaring when actually, you are unable to respond in culturally expected ways.

But I digress, which I often do, since I’m still navigating how and when to share all the information I’ve gathered in the thick of my menagerie of fixations (the “special or “restricted interests” of those on the spectrum that compel us to compulsively collect information or objects and that are often labeled “deviant” in terms of the broader range of focus of our peers). So I was diagnosed with ASD at the age of 28 by an establishment I do not trust – and not just because “normal” is so often whittled into society’s stones by the dominant. My chariness stems largely from the fact that I existed in a world not built for me or by people like me for nearly 30 years before someone gave me medical permission to be myself. It turns out that many Aspies were not diagnosed until adulthood, especially women, who largely only get evaluated when they take their kids in. Who knows, maybe as many of these folks were under the care of a doctor of psychology for the latter third of their teen years and into emerging maturity, too.

Still, though, I remain skeptical of how and why diagnoses are formulated in the first place. Once you make a diagnosis, it’s common for the responsibility of “recovery” to fall on the individual who now “has” the “problem;” those that struggle to heal and become “functional” (whatever that means) are faulted and considered failures, if they’re not swiftly discarded altogether. My experience interfacing with this world as an Aspie with attending mental suffering, having only conventional language for the latter, goes something like this: “If you’re Aspie and you know it (or not), flap your hands. If you’re Aspie and you know it (or not), flap your hands. If you’re Aspie and you know it and you really want to show it…don’t.” The burden of inclusion seems to be on the outsider – I’ve found this to be true among people with physical disabilities, women, people of color, the poor, those experiencing homelessness and people facing mental distress (to name a few!) – where the one excluded has to prove herself worthy of being let in. It’s a no-win setup and just screams out to me to be resisted wherever it is found and since diagnosis and its process seem to serve to further codify divisions…

This, no doubt, bolsters my misgivings about diagnoses: not only has “mental illness for a long time been defined by men” (Andrew Solomon, The Noonday Demon: An Atlas of Depression, 176) – this is especially true in the ASD realm – but the patterns of behavior described in the diagnostic criteria for ASD are only “symptoms” when the Aspie is in community. If left alone, the social struggles and “eccentricity” of her interests disappear (Tony Attwood, The Complete Guide to Asperger’s Syndrome, 55). Her nervous system may still be on overdrive but, if she is allowed to control her environment, even her physical sensitivities are not readily observable. No problem, then: simply remove the Aspie from what all human beings were made for and she’s no longer an Aspie. The ‘location’ of the problem will determine, democratically speaking, who takes responsibility for changing; the defining of a problem in the first place generally relies more on the bias of those who have the sway of majority rather than empiricism; the goal, it seems more and more, is distraction by division. There’s a seething heap of problems we as an apparently proudly globalized world have that benefit a spare number of soi-disant elect and require all of us to tackle. Conveniently for those at the helm, we’re rifted up and down like the sea floor. But, speaking of all of us, it’s worth asking that, if ASD is primarily a social “disability,” wouldn’t we all be accountable for an Aspie’s well-being?

I don’t want to come off like I’m affirming the DSM’s diktats. I think that “problems” are often themselves spectrums rather than discrete points. It may seem that it’s as simple as positing that wheelchairs wouldn’t be an issue in an even, paved world and on one level, that’s true. It’s just that this – a smooth, flat earth – is not the level we live in (well, most of us anyway). We can and should ramp up and stair down but this only addresses one difficulty. Would it effectively pave over the now-neuronal trenches of prejudice and facilitate access to honest and supportive relationships or merely equal access to buildings? Is the problem not the problem if the proposed solution creates more problems or is the proliferation of problems evidence of a bad solution? Or is such a quandary just job security for philosophers?

Either way, this is not to say there should be no parameters on defining a problem (or not). The further you go in one direction, the more you can start to sound like you’re advocating for moral, social and objective relativity, not to mention depriving some in true need of support – best received if these folks are self-appointed. The further you go in the other, the deeper you dig the pigeon holes for shoving people into.

As for square pegs in round holes, pigeon or otherwise, I truly believe I am different. I have known and felt it the length of my memory. Social contact is both something I pine mightily for and, even more ferociously, fear, often vacillating between the two rapidly enough that I might at times seem somewhere in the middle of this spectrum of desire. In reality, it’s a terrific war between two decorated but clumsy brigades. (Did I mention we Aspies don’t do “gray” that well?) The world now knows far too much of perpetual warfare; when it happens on the inside, it dims the luster of commitment (to anything), a thing you really need, meaning- or accomplishment-wise (unless you count always having chiseled, smoldering jealousy at the ready as an achievement).

But the origin of this eternal, internal unrest is probably my straining to jam my round-peg self into the square hole, or however that goes, of the “normal” world as long as I’ve lived and have given more than I’ve gotten with each new acrobatic tactic this tetragonal pit of a world has asked of me whenever I wanted, say, friends or employment or peace. And, if you ask me, this world really is square (and rapidly becoming a hole, too). I simply do not understand what is going on around here that is worth repeating day ebb and day flow and have striven myself riven trying to. Why people want to bring more people into this flagging beauty of now receding grandeur generation after generation is not a question I can ask without causing mass offense. Aspies are, of course, familiar with this, too.

What I have found is a small-ish but non-negligible population that possesses a dogged desire for titanic-scale transformation. Finally, something I can relate to! But how does one approach changing a rabid gorilla into a chandelier? (What else are we to do with all this amazing, shifting light?) The career fairs at my college seemed as good a place as any to start but then I remembered the crippling despair, the lack of what is presented as desired skill sets and the inability to connect with humans – each simply on its own will maroon you every time. So much for relating to the ballooned-by-hope activists. And anyway, I didn’t even want a “career” until I was 25 because I couldn’t possibly imagine being good enough at one thing to do it for the rest of my life (my fixations are on rapid cycle, none of them lingering enough to render me an expert in anything, only frustrated with nearly everything) let alone doing it for someone else who increasingly cares less and less about who I am and more and more about how many minutes I spend in the bathroom.

I get that this isn’t quite how all “careers” work – at least the first half of my conception is largely false anymore: the average person changes careers, what is it, three times now? My compliance to what “rules” I am able to detect is largely out of anxiety. I do not see the point of replicating what I find intolerable, not to mention that this jig is rigged. But the only way to keep – I hesitate to say “my” – abyss at bay has been to keep up the role play – do perfect at school to get a good job and be a happy taxpayer. Speaking of school, I’ve been quite successful there; academic aptitude is merely social approval by numerical means so, technically, this is about the only way I feel I’ve achieved the acceptance of others. But success in school means less and less these days and anyway, I’ve not found a sustainable, non-soul-killing way to deploy mine.

This diagnosis of ASD (paired with rather herniatic depression and PTSD so old its sprouting verdigris) elegantly explains so much of my 28 years – particularly the jaunts of ignited-phosphorus rage at injustice and greed or at the hairbrush for “pulling” my hair when it snags on a tangle or at the “inaccurate” construction of a taco. These fits are frequent, but they’re also quick, which means they never materialize into protracted passion and are thus largely less than useless. ASD for me presents a spectrum of its own: the one that binds shame and elation together in a three-legged race. On the one hand, how does a diagnosably socially impaired individual tell her friends that she’s socially impaired at, presumably, the neurological level? Does she apologize for her lack of warm fuzzies whenever she gets an invitation to hang out, the searing exclusion she feels when she does not get one, the clear contradiction between the two, some combination of all three options? Does she, conversely, muster up this commonly promoted quality of boldness, proudly owning and strutting her awkwardness (if it’s not already displayed), as if the uterine environment were more like a department store and she had her choice of minds from any number of brain racks? Does she assume her impairment has been obvious all along? Does she seek a support group for her preferences to be alone much more often than neurotypical (NT) people even if her druthers are not merely the lesser of two troubles?

On the other hand, there is a word for my amorphous, intractable pain, and it’s not “failure,” “worthless” or “defective” – at least not in itself. Whether mere difference or actual disability, that which I have always felt has a name. And once something has a name, it’s a lot easier to permit it to exist. Telling no one, especially those closest to me, is analogous to retracting that permission without extinguishing the existence of the endogenous. Secrecy breeds brumal bondage (and depression, according to Solomon, The Noonday Demon, 187) and fuels stigma, and being trapped within yourself certainly doesn’t make for a good life, not to mention that it doesn’t ease any “built-in” social difficulty.

Of course, diagnoses are double-edged swords: they may validate your lifelong feelings of difference and outsider-ness, but once your pain has a name, it’s a lot easier for friends and family to use it against you. Imagine growing up feeling as though you alone are being blamed for the dysfunction and pain in your relationships; a diagnosis can tempt many to believe they were right in landing “the problem” solely on you. The level of invalidation and claustrophobia that being told your social perceptions and needs that flow from these perceptions are and will always be “incorrect” a priori because that is the nature of how your brain works is F-ing ineffable.

But, once again, I divagate. Being “trapped” within one’s self is the very nature of autism as the broader society thinks it understands it – odd, given that no amount of sharing one’s secret will truly penetrate the fitted glass coat of isolation no matter who you are. But the present “interiority complex” is an assembly of delays, difficulties and/or differences that dictate much more than how well a child does in school. I did not know I needed glasses until I compared my eyesight with other kids my age – that is, until I went to kindergarten. Likewise, I didn’t know that my compulsion to not let doors slam, to plug my ears before flushing a toilet and to seek out only one experience or friend at a time was unusual until I saw others easily walking away from doors and bathrooms and people walking around, nervous-tick-free, in groups.

Of course, merely noticing that you are different doesn’t remedy the difference; it can, however, lead to disability: I, like Temple Grandin’s mother Eustacia Cutler, happen to think that a lot of what people on the spectrum experience is “just” an extreme version of what many NT people experience. But this for me has meant proportional (read: extreme) anxiety around people, about myself and in the world both because I perceive I am different and I don’t know how or if I should change it. Not fitting in despite trying for so long, not seeming to function like everyone else around you albeit your many and best efforts is deeply depressing (again, I use this word not even clinically so much as desperately, and certainly not flippantly or synonymously with “sad”); if doing something the same way over and over again is called insanity, what is doing every possible different thing you know to try and achieving the same result called?

When I got glasses at age seven, I remember being utterly incapacitated by the bumps on the clouds. What unmitigated wonder! How incapacitatingly astounding! Some devalue “diagnosis” but Asperger’s has, if I’m honest, been a lens invaluable to my self-understanding. So if ASD or Asperger’s is the name of my set of symptoms or differences or experiences, then I guess describing my life is detailing my perspective from this place on this particular, pre-defined spectrum. The problem is that I do not know whether being able to see clouds as textured as opposed to fuzzy is optimal – most nouns (people, places, things, words, ideas, dead verbs) pixelate when you “zoom in” so if you look long enough, you hardly know what you’re looking at anymore anyway. Clouds are on a continuum, too; they can be bumpy and blurry, often at the same time. I wonder if I’m not so much on the “autism” spectrum but on the human spectrum, where my “different” understanding of the world happens to be inconvenient to those who set the world up and/or are able and willing to play by its rules without feeling, among other things, like there’s sandpaper, strobe lights and conflicting directions everywhere.

Being self-contained in a severely individualistic culture may not seem like a big deal; it may go unnoticed. For nearly thirty years. But there are several things that “self-containment” has not meant for me. All outward appearances to the contrary, it has not meant that I can take care of myself, at least not in the way this culture demands, which has defined ‘adulthood,’ among other things, as no longer needing anyone to do anything for you at all. I am doubled over with fear of the future and of the possibility of fighting alone – both for survival of whatever’s going to be left of this planet by the time my generation may otherwise expect to retire and for myself (even if it means against myself in the battles I wage with myself). Speaking of isolation, being self-contained has not actually meant that I want to be alone. I’ll say it and I feel it quite often, but what “I prefer to be alone” has actually meant for me is: “Social interaction is so deafeningly challenging and painful for me that, despite my opiatic dread of loneliness and rejection, the latter is less torment than the former.”

As deep as my longing for connection goes, the majority of the rules for social interface prohibitively bewilder me. So I set expectations erroneously. Apparently, “sure, I’d love to hang out” more often means “I want you to think I’m a nice person” or “I can’t say no” than it does “I’d love to hang out,” at least in my present culture (that of Seattle, WA). As hard as I strive to be kind, gracious and forgiving, I have an absolutely awful memory: I have the auditory equivalent of photographic recall, which means that every hurtful comment, every broken promise, remains in my mind, like I’m keeping a record of wrongs. As much as I crave intimacy (that is what my heart was made for, after all), I have learned that I define and use words very differently than most people and I’m not sure who, if anyone, is untrustworthy here: my understanding of people, as my diagnosis would have you believe – I believe They call this Theory of Mind – or the people themselves. But is it not at least inconsistent to verbally affirm one’s desire to get together when no intention to do so is present?

For poor eyesight, the “cure” is easy: put fun-framed glass in front of your face that does something for you that you cannot do for yourself no matter how much you might will it. There is, as of yet, no apparatus for “correct” social interaction (whatever that means); behavioral therapy might come close, but that, to me, beyond seeming a bit cruel since behavior is a symptom of the problem rather than the problem, reinforces the notion I’ve struggled with my entire life: you can either be who you are (so, aloof, awkward or rude according to the ‘normal’ world) or have what you want (love, purpose, social place). So while my choice in terms of people is pain – either the overwhelm of interaction or the wounding of aloneness – and I often retreat, resigned to self-containment, why should I believe that I am the one who’s “wrong” or “disabled?” Simply because I’m in the minority? Have we really reached a point in society where the expectation that people mean what they say, say what they mean and follow up accordingly, take more time to grow up and have intense interests (“conventional” or “otherwise”) is a “disability?” Why am I the one who needs “glasses?”

I have taken an inordinately long time to grow up. The doors in my brain are very heavy and the mechanisms I’ve used to jimmy some of them open come at the cost of deep discomposure to me, manifesting, as I’ve said, in “clinically significant” (whatever that means) levels of depression and anxiety. There are some doors I have not yet figured out how to open: I still see a dark, bold line separating me from “adults.” I am to-the-nines undone by the passage of time. I am compelled to care about what everyone thinks as much I can’t very well intuit it, very often at the expense of what I need or want, because rejection is an unrelenting master precise in its orders, which are often baiting and always extravagant.

Of course, I cannot wholly discard diagnosis. I think it’s cruel, in a victim-blaming sort of way, that the existence of a diagnosis often locates “the problem” on the person suffering “with” whatever they are diagnosed with (most of us are – real or perceived – suffering alone). To me, that itself is one cause of suffering. I know too many dear souls who have been irretrievably harmed by the incidental over-identifying with one’s diagnosis that the caring profession has yet to effectively remedy and sometimes, I’ll give the benefit of the doubt here, unwittingly (or otherwise). Yet, the name ASD so easily and completely, with but a few exceptions, maps to my life experiences thus far that I cannot blow off DSM-esque patterns of thinking even as I find the DSM itself, this latest one in particular, more of a reflection of Big Pharma’s market strategy and design. Because I have spent a disproportionate amount of time not knowing what was “wrong” (and, in my opinion, in a disproportionate amount of pain than my white-Suburbia childhood warranted), I don’t yet know the road to betterment, though I’m not without glimpses.

They say that it’s easier to turn a moving car than a parked one, but they seem to forget to mention a vehicle’s need for regular oil changes, maintenance and, ahem, refueling (I’ll resist plunging into fossil-fuel-fueled despair here). My car actually might have a leak in the gas tank and I often wonder if oil is the thing to soothe its engine. Even so, my problem may now be exhaustion, but that’s only because I have been missing street signs left and right. Whether it’s because I haven’t been able to see well enough or they aren’t located in a place I have known to look isn’t explicated in an ASD diagnosis; discerning which it is seems in large part to depend on who’s paying.

But a large root of – I again hesitate to say “my” – depression is the state of worsening disrepair the (w)hole of the world is in, largely at the hands of the voracious and powerful; thus, why would I attempt to conform to a world that makes me spacey with rage? Some in my life devalue diagnoses out of the fear that such a label will eclipse one’s conception of his or her identity. But here again, we run into a conundrum. On the one hand, being seen as rude, socially (and physically) clumsy and aloof when you’re not (or those are surface-y terms for what’s actually going on) is damaging and isolating. On the other hand, not being seen for what you are is equally, if not, more, damaging, even if you are socially inept and distant. In diagnosis, there can be a prognosis, a previously hewn path, the expectations of which can stabilize the disorientation of disease and aid in adjustments that will need to be made as life bumbles ever on. Might there be a third option, a spectrum approach here, too?

ASD. Is it “who I am” or something that has happened to me? Does autism lock a person inside their mind such that, in some cases, with enough poking, prodding and praying, the “person inside” will “emerge?” Should we then push those on the spectrum to “fake it till they make it” and can assimilate into the NT world? Or would this superimpose a foreign self over the one that is fully expressed on the spectrum? And how much validation do we want to give the existing order either way anyway?

If we put it as a choice to “the patient,” are we in a way implying that those on the spectrum intended to be there in the first place, which again sounds devilishly close to victim blaming? We do not arrive as little tabula rasas for our parents to mold and make as they see fit. It has not felt to me that whatever content my ‘self’ is made up of is free for the fashioning. Even if people with ASD did somehow make the choice to be thus, we should not assume that all choices are reversible, well- or ill-informed, good or bad. Further, our upbringing has an everlasting effect on our development and personality and psyche wherever we fall on whatever spectrum. And anyway, it’s still anyone’s guess at this point what a “self” actually is.

For me, it is a self on this rough and unready spectrum. I don’t say that because I’m proud of it and wouldn’t change it if I could, at least not right now. I say it, not without some level of acceptance and relief that I’m not alone even as I’m different, though there are some ways I’m different even among the different. I claim ‘self on the spectrum’ as one wavelength of my identity because I can’t, to my current knowledge, change it even if I would. And one bit of conventional wisdom (God, grant me the wisdom…) that may actually aid here is choosing what I’ve discerned I can’t change anyway, whether that’s a distinctive set of brain rules or a hole the size of intimacy in my heart.


Photo by Cristiano Anderson

 

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About Author

m.nicole.r.wildhood is a Colorado native who has been living in Seattle – and missing the sun – since 2006. She has been a saxophone player and registered scuba diver for more than half her life. In addition to blogging sporadically, she writes poetry, fiction and nonfiction, which have appeared in Clash of the Couples and other anthologies, as well as magazines like The Sun, journals like Lodestone and Ballard: A Journal of Street Poetry, and blogs like ditchpoetry.com and Café Aphra. She is currently at work on a novel.

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