(Pensacola, FL; May 7, 2023) – Bottom line up front: I have what used to be termed Asperger’s Syndrome (AS). Originally thought to be its own syndrome, AS is now recognized as the mildest form of autism. According to Johns Hopkins University:
AS is characterized by poor social interactions, obsessions, odd speech patterns, few facial expressions, and other peculiar mannerisms. Often, kids with AS have trouble reading the body language of others. They might engage in obsessive routines and show an unusual sensitivity to sensory stimuli — for example, they may be bothered by a light that no one else notices; they may cover their ears to block out sounds in the environment; or they might prefer to wear clothing made only of a certain material. (https://www.hopkinsallchildrens.org/Patients-Families/Health-Library/HealthDocNew/Asperger-Syndrome).
Per the above-noted Johns Hopkins webpage, here are the ‘signs and symptoms,’ and I’ve highlighted in bold text the markers I land on that led to this diagnosis finally getting made. Frankly, I grew up ‘hiding’ a lot of these because, well, I thought everyone was like this (and therefore never could understand why people castigated me for things I thought everyone did):
- inappropriate or minimal social interactions
- conversations that almost always revolve around self rather than others
- “scripted,” “robotic,” or repetitive speech
- lack of “common sense”
- problems with reading, math, or writing skills
- obsession with complex topics, such as patterns or music
- average to below-average nonverbal cognitive abilities, though verbal cognitive abilities are usually average to above-average
- awkward movements
- odd behaviors or mannerisms
It’s important to note that, unlike kids with [low functioning] autism, those with AS [high functioning autism] might show no delays in language development; they usually have good grammar skills and an advanced vocabulary at an early age. However, many do have a language disorder — for instance, a child might be very literal and have trouble using language in a social context.
Often there are no obvious delays in cognitive development. Kids with AS can have problems with attention span and organization, or skills that seem well developed in some areas and lacking in others, but they usually have average and sometimes above-average intelligence.
Asperger syndrome can be very difficult to diagnose. Children with AS function well in most aspects of life, so it can be easy to attribute their strange behaviors to just being “different.” Experts say that early intervention involving educational and social training, done while a child’s brain is still developing, is very important for kids with AS.
This was a rather remarkable diagnosis this past month because three providers (one counselor and two psychiatrists) came to this conclusion independently of each other. My normal counselor (your standard ‘talk therapy’ to monitor mood, etc.) and psychiatrist (she monitors my head meds) have worked with me for over nine months now, so they’ve been observing me for a good bit. The third (the other psychiatrist) was screening me for a PTSD support group, and she brought it up the very first time she met me. When I spoke with the other two, they told me they’d noted my autistic behaviors, but actually thought I already knew! They were under that impression because I already engaged in numerous habits high-functioning autistic people use to manage the issue so they can live independently.
Actually, as I laughed with each of them, those ‘behaviors and habits’ stemmed from overcoming a suicide attempt and numerous traumatic incidents in the Navy.
One of my senior chief petty officers actually suggested this to me back in 2008 (based on interactions he’d had with an autistic family member). Unfortunately, a series of unfortunate events derailed me trying to solve this mystery for 15 years. Once this came up with current providers, I started looking at my personal history with new glasses (to use a metaphor), and the whole picture finally came into focus:
● I started withdrawing from playing outside with the kids back in 1980 when I was eight, going on nine. Part of it was simply that I did enjoy playing by myself, but the bigger reason was an increasing discomfort with the gang of kids. It was nothing I could articulate for a very long time, but it was like they all operated on a secret system of codes I wasn’t privy. I increasingly felt one step behind them in what we did. I began to just chalk this up to being a snotty snob, so I’d do my best to force myself to be ‘more friendly’ and all, but social interactions outside a professional setting (where the rules and expectations are clearly defined) has always been a painful situation for me.
● I’ve always been ‘obsessed’ with odd collections of data, such as the death statistics of the Titanic, Hindenburg, and Pearl Harbor disasters. I remember being 13 and 14 and being told I was ghoulish for this; I thought it was just fascinating information. I’m still fascinated by disasters to this day, although maturity and real-world experience taught me empathy for the real-life humans involved in those events. Also—we all know I’m a total history wonk about ships and planes, but here’s another telling marker: my interest in those machines is the machines; I had to literally teach myself to pay attention to the people as I formally studied history in college.
● My writing skills are clearly superior, but my math skills peaked with pre-algebra (and even that was a major stretch). I barely passed college algebra, and could never grasp how to read the symbology in pre-calculus at even the most basic level. To this day I can grasp deep concepts about science, cosmology, volcanism, etc., but I get completely lost as soon as the math part of it all comes up. I used to attribute this to simply being too lazy to learn math (didn’t matter that I was in my teacher’s office all the time studying and trying to figure pre-calculus out; obviously I was a lazy jerk because I clearly didn’t do enough work to get it).
● I’ve hidden how lividly I hate the textures of certain foods and cloth. If I like it, I like it, but if I don’t like it, I’m pretty much revolted by it in an extreme fashion. Always hid this one outright because I got castigated for being “selfish” and “picky” way too much in my young adult days, so I added this to the growing list of moral failings (utter elitist selfishness) that I needed more work to ‘correct.’
● If you’ve known me for longer than 5.37 minutes, then you know I’m almost obsessively focused on things I find interesting. I think nothing of listening to the same music or watching the same TV show over and over and over for days, months…even years—and often memorizing the whole thing in the process (or large parts of it), and I’m damned good at puzzles and other things with patterns (this applies to storytelling, where certain literary patterns and techniques
● I quite literally feel like I’m living in a foreign culture. This was another marker all three providers keyed in on. I don’t just feel awkward or uncertain in social situations; I feel the same way I felt when stepping off the ship into a foreign port. I know enough of the local culture, customs, and language to maneuver and function, but the nuances and subtle cues are lost on me, leaving me constantly at risk for committing the most embarrassing faux pas (if not outright accidentally being an insulting snot). Turns out this is a common way autistic people describe the anxiety of going out into public: like we’re in a foreign culture and feel a constant low-hum of anxiety we’ll miss the ‘obvious’ and get into trouble. Now, add to that the cognitive dissonance of knowing this culture is my native culture, and yet still feel like I’m in a foreign land? No wonder autistic people have higher incidents of anxiety disorders, too!
The insidious ramifications are subtle, but very pernicious. You see, I spent 51 years believing I was a morally deformed individual, a truly selfish little troll with a mishappen soul who had to force himself to be a normal, morally upright person. Now, this doesn’t mean I can’t be a selfish snot; I’m as human as anyone else and capable of selfish sin just like anyone else. But there’s a quantum difference between being a selfish snot and just being, well, developmentally different.
And then…BANG! That 51-year-old self-image was revealed as completely, totally, and hilariously wrong. You’d expect me to throw a party; “Hey, I’m NOT the raging jerk I grew up believing I was!!!”
Unfortunately, it’s more an experience of having your entire sense of being who you are destroyed in one fell swoop. Even the destruction of something toxic is destruction, and that requires the work of reconstruction. I related to me a certain way for my entire life based on certain beliefs. Turns out I was actually being quite abusive and cruel to myself for 51 years. The feeling of stupidity alone is indescribable, forget the sense of horror at what I did to me for so long!
The most painful revelation is that I really am the single greatest cause of my relationship failures, platonic and romantic. By not understanding I’m literally mentally different, I’ve been banging into humanity in ways I thought were courteous, considerate, polite, and (most of all) normal, but often hit others as a cluelessly intensive emotional/spiritual tsunami swamping everyone in the room.
Everything I know about social interactions, relationships, etc., has to be re-evaluated. My entire concept of who and what I am is shattered and has to be rebuilt—and that’s a painful place to be even when it’s a good thing to face.
Now, that’s the ‘woe is me’ part of this story. I don’t say that to belittle myself; the first step in facing difficulty is admitting to yourself it sucks and it’s not fair you have to deal with it. I’m as human as the next, well, human; I need to allow myself time to feel the ‘suck’ of it all before plowing ahead.
Please note my language here. I allow myself moments, not my entire waking life.
Seeking out appropriate help is not wallowing in victimhood. Seeking out appropriate help is the responsible thing to do. Mental health is no different than physical health in this regard; we all need varying degrees of medical support, but proper medical support is designed to help a person live as independently as they can. Yes, not all individuals with autism require the same level of care; clearly, I’m fully capable of living on my own. The help I need is not for someone to let me live my life free of consequences.
I do not need people swooping in to make excuses that my bad behavior is justified because I’m afflicted with certain mental struggles. Nope. What I need from those around me is a bit of grace, but grace doesn’t mean I get a free pass for crappy actions any more than a fully able person gets a free pass. If I behave rudely or thoughtlessly, the odds are that I’m not being selfish per se, but rather that I’m literally just disconnected and miss the social cues. I am still responsible for modifying my behavior. I will ask for a bit of grace in how these things are handled because my motivations are usually based in cluelessness and not genuine selfishness, but I’m not helpless and therefore shouldn’t act like I am.
Mental health struggles are not a free pass allowing someone to behave like an entitled tyrant. Yes, there are those who are so afflicted in their minds that they actually can’t know right from wrong, and they need to be under full-time care. However, if a person knows right from wrong, then that person can take responsibility for their behavior and anyone making excuses for them is actually removing that person’s agency by shielding them from the consequences of their actions. Sad to say about our species, but we all need to feel the negative consequences of our bad behaviors just as much (perhaps more) as we love to accept the accolades and other positive consequences for our good behavior.
I will keep my agency, thank you very much! I don’t need (or want!) excuses made for me; I just need occasional help navigating things.
If you have a person in your life with mental health struggles, don’t coddle them, and definitely don’t shield them from the blowback of their bad behavior. Be judicious in judging how to approach them; after all, mental health issues impact our ability to communicate to some degree. But, if that person is stable enough to be out in public, then they are stable enough to know right from wrong and respond appropriately if/when informed something they do is improper behavior (again, the approach to this is critical).
I’m autistic. Ok, so…now what? Well, other than sharing this to advocate for proper support for those of us with mental challenges and to fight the stigma associated with mental health, the ‘so what’ here is that I just go on living. I’m still responsible for my behavior, only now I can devote more energy to that effort instead of diverting energy to perceived moral failings that actually don’t exist.
***
Check out my video on this topic at: https://youtu.be/uFMT7CP-tog
***
#nathanaelmiller, #sparks1524, #mentalhealth, #autisum, #spectrum, #stigma,
Sparks1524 