Ambiguous Neurodiversity
Please welcome my college friend, Dave, who has written this guest post. Dave is an accomplished musician and tech-savvy guy (and hey all you Boston-area ladies: he’s single!) who is struggling with his self-identity as he ponders an adult diagnosis of Asperger’s Syndrome.
This post grew out of a conversation about “ambiguous neurodiversity,” the state where one’s place between The Spectrum and Neurotypical is unclear. It’s the dilemma of being in a position where society’s general insensitivity towards issues of neurodiversity marginalize you, but not in a clearly identifiable position to benefit from the support networks and legal protections available to “truly” neuro-atypical individuals.
Anyway, the short version of my story is that I am an Aspie. Or I might not be.
The long story is quite a bit more complicated.
In undergrad, I went through teacher prep, and I worked three hours a week for a semester with kids aged 3-6 with PDD, autism, and other cognitive and behavioral challenges. I also had a close friend in town with a very low functioning autistic brother in his late teens. I knew the difference between Rainman and real-life autism. But that was 1995; almost nobody was talking about AS at the time.
Since my early experience and exposure to spectrum disorders, I have on occasion described some of my own behaviors and personality traits as ‘autistic,’ and once in a while I’d even ponder the possibility that it was more than an adjective. But that sort of ideation was always the fantasy of a self-diagnoser, or so I felt. The possibility that I could live with a spectrum disorder for 35 years without knowing it left me shocked, incredulous, angry at my parents for not recognizing the childhood patterns that precipitated my difficulties in adulthood, and… intrigued, curious, optimistic? A new door was in front of me, with new possibilities.
I brought the question of an AS diagnosis up with my therapist, and she quickly expressed her strong feeling that my primary diagnosis was depression. And thus began the wandering and wondering, unsure whether to trust a specialist with no more education than I have, but who has, presumably, helped clients with spectrum disorders in the past? Or my M.D., whose only experience with spectrum disorders is as the mother of an Aspie (who she says I remind her of)?
During this time, I came to realize an AS diagnosis would mean a lot to me. It would mean trying different avenues of therapy. It would mean access to a community that would understand the cognitive differences that my friends, family, coworkers, even my therapist, seemed unable to “get.” And it would explain a lot of things about my past and present experience, things for which I was, and am, desperate for an explanation.
It’s important to emphasize the sense I had during this period of not knowing who I was, what kind of brain I had, even whether the problems I perceived were real or imagined. This sort of ambiguity has a tremendous impact on me. If I am not sure what’s going on or am entering an unknown or unfamiliar situation, in any context (macro- or micro-cosmic, internal or external,) I become extremely uncomfortable and experience a high degree of stress. I think everyone experiences this; I don’t think everyone is paralyzed or overwhelmed by it, however.
But as I drifted through doubt and ambiguity, certain things started to click. The resonances began to overcome the dissonances. I found a quiz with more detailed questions, and a much more detailed analysis of the results, than previous tests I’d taken. On other tests I answered “no” to Clumsy, but on this test I answered yes to “do you have difficulty catching or hitting a baseball.” On other tests I answered “no” to lacking empathy, but on this test I answered “yes” to “do people get angry with you and you don’t understand why?” And so forth. And so two weeks ago I brought the results to my PCP for her to review.
I spoke to my therapist again on Thursday, June 17th. She reiterated her doubts but expressed openness to discussing it. The sticking point for both of us was the empathy issue. I strike her, and myself, as a highly empathetic person, and that is a pretty big contra-indicator for an AS diagnosis, or so I understand. But on Friday, I reviewed the results with my doctor, and she said what was already in the back of my mind about the empathy issue – that I’m an intelligent individual and I’ve adapted; I’m perceptive, and nurturing, and kind, and have learned to intellectualize an empathetic response where real empathy fails me.
In any event, perhaps ironically, perhaps auspiciously, on June 18th, 2010 (Aspies for Freedom’s Autistic Pride Day,) my doctor gave me a “working” diagnosis of Asperger’s Syndrome. I’m still not 100% convinced without a second opinion, but I am excited to be this much closer to having a slightly more certain and totally different perspective on the difficulties I’ve faced throughout my life.
The Autism Spectrum is just that – a spectrum. You’ve got individuals who are unable to take care of their most basic needs, like my friend’s brother; you’ve got individuals who are very high functioning but clearly display visible symptoms, and then you’ve got the infrared and ultraviolet bands of the spectrum – the invisible, ambiguous borderline cases, like mine. What it comes down to, for me, is that whether my brain proves to be a bona fide hair-dryer, or actually turns out to be a curling iron, or a waffle-maker, one thing is clear: my toast = epic fail. And not knowing why makes it all the more frustrating.
Everybody experiences challenges in life which only they can know, and I’m reluctant to compare mine to anybody else’s. But I hope that sharing my experience has shed some light on what it’s like in the margins of the spectrum.
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@keystspf@xanga – “I have learned … well
enough that it would be that someone has to take my word … But I remember as a teen, wondering why some things
seemed so easy for everyone else …
Like, someone [is] teasing and
everyone knows it and … I do the same thing and people look at
me like I’m the worst person in the world. I have yet to figure that one
out… Perhaps because I tend to pick things that are totally true so
it hits a nerve? Don’t know.”
I don’t have an answer for you… but this whole paragraph (including the parts I snipped) totally resonate for me. I find that I’ve adapted well enough fake being normal to the point that nobody believes there’s anything different about my brain, but not so well that people don’t find me annoying. It’s like nobody can believe I might be an aspie, but everyone’s willing to believe I’m an ass.
The social interaction thing – it’s hard to articulate differences when you only have one brain and therefore no outside reference. But what I’m slowly coming to realize is that what comes naturally and intuitively to most people for me amounts to remembering and following a complex code of rules. Over the years I’ve learned a lot of those rules. I’m good at rules. And so I can fake it and sometimes even wing it. But there are plenty of situations where I don’t know the rules, and in those situations I’m completely paralyzed.
It explains why it never makes sense to me when people give me the age-old dating/interview advice (job interviews and dating are two critical areas of my life which are severely impaired, a fact that is not “visible” to the person who interacts with me casually) of “be yourself” or “just act natural.”
The fact is that it’s not natural at all to me. Its a completely “non-native” process that I have to “virtualize” (to borrow a couple buzzwords from computerspeak) in order to simulate it.
People say I overintellcutalize or overanalyze things all the time. But , as they say, when all you’ve got is a hammer…
@notanaffliction – Hah. I’m not THAT accomplished.
– dave
@keystspf@xanga – This reminds me of a book I read a while back – Autism and the God Connection
by William Stillman. Its premise is that one of the strengths of
autism is an enhanced spiritual sense, and that embracing the gifts of
autism can bring one closer to the divine. Stillman, who has
Asperger’s, writes that autistic individuals often experience a
disconnect with the physical world, creating an “aptitude for accessing a
non-ending stream of consciousness,” and that “because of this shift in
orientation, those with autism may hold capacity for spiritual
connectedness, heightened awareness, and exquisite sensitivity beyond
what is considered typical. These abilities are gifts and blessings.” I think you would like it.
@notanaffliction – True. It is quite possible that I would not even be diagnosed as an adult. I have learned to control enough things well enough that it would be that someone has to take my word for it that it is a fight to do so. But I remember as a teen, wondering why some things seemed so easy for everyone else and I just couldn’t do them. Imitation didn’t work since I couldn’t quite figure out all of the variables. Like, someone says something kinda mean, but they’re teasing and everyone knows it and laughs… I do the same thing and people look at me like I’m the worst person in the world. I have yet to figure that one out… Perhaps because I tend to pick things that are totally true so it hits a nerve? Don’t know.
I am doing some research into some stuff that explains some of the stuff I can do that I always assumed was normal. A lot of it is stuff that would explain the stress that causes meltdowns… but to do the research I have got to get a better grasp of the basics of quantum theory and psychology, because it gets into some pretty advanced stuff. I’m looking for a tie between autism and some of the theories of consciousness that explain various “psychic” phenomena. Apparently, it is not “normal” to sense the emotional state of every person in the room, and feel it as though it is your own. (Think Deanna Troi on Star Trek… but without the control she has.) It isn’t normal to hear the security systems in museums or be stopped dead in your tracks by flashing lights. I am extremely sensitive to changes in air pressure and temperature as well. I haven’t tested any of this though to find out what the range of normal human experience is as compared to mine.
Talking about what I can do is tricky. Especially since I grew up in a church that looked at most of it as “evil”. Keeping secrets is not one of my strong points, yet I’ve had to keep all of this sort of stuff under wraps for most of my life. Talk about stress? I would know things about people with no explanation of HOW I knew them. There were certain people that this made me so uncomfortable around that it was plain out torture. There were certain people I was outright afraid of because of what I felt coming from them. Being a kid, I had no choice but to do what I was told. I couldn’t explain it. Even now, I don’t think I could.
@keystspf@xanga – Your experience should be as valuable as anyone else’s. Hell, if a Playboy bunny can become the world’s authority on raising a child with autism, why not you?!?
@notanaffliction – This sounds a whole lot like my own experience, actually. I was “diagnosed” with depression after a 15 minute conversation (if you could call it that) with a psychiatrist, and put on Welbutrin, which caused THE WORST breakdown I have ever had the first time I took it.
I remember the day I realized that I was “stimming”. I didn’t know it was called that at the time, but I realized I was walking around Walmart shaking my hand back and forth by my side. I don’t know if I had done it for years before realizing it… but I thought about it and it hit me that people might be thinking that was kinda strange. I was 26 years old. I also became aware of how much I “bounced” when nervous… shifting my weight back and forth… or pacing.
I learned about AS about two years later when searching for something to explain why my son was so “weird”. I looked up the things that Josh was doing, and found that he was most likely on the autistic spectrum. Then I started reading about Aspergers and some of it was a perfect description of me, both as a child and what I fight to control as an adult. My deep seated distrust of all things modern medicine has kept me from seeking an official diagnosis for either myself or my son, but knowing what we’re dealing with has let me find my own ways around some of our issues. I wish I had the “education” to back up what I’ve learned so I could publish something, but unfortunately without the credentials and official diagnosis nobody is likely to take any of it seriously.
Please note: this is a guest post from my college friend, Dave. Dave is an accomplished musician and tech-savvy guy (and hey all you
Boston-area ladies: he’s single!) who is struggling with his
self-identity as he ponders an adult diagnosis of Asperger’s Syndrome.
– Meredith