This is likely the final (planned) post in my series of posts about how the official US’s CDC criteria for autism might look in real life, using myself as one (and only one) possible example. Of course, if I think of any additional information/anecdotes and/or addendums to the posts in this series, I’ll tag them the same way, under “CDC official diagnostic criteria series”. (Although, an idea for a “spin-off” post came to me as I was writing this one.) 🙂
Right now, some might be scratching their heads and saying, “but wait a minute–aren’t there five criteria? Why stop at Part D? That’s only four criteria. What about Part E?”
That’s a fair question, so I’ll go ahead and get Part E out of the way now.
Part E is about excluding/ruling out intellectual disability; if we assume that I’m not intellectually disabled (well, some might think I am 😉 ) then we know that I already meet that criterion because those other issues have been ruled out.
OK, having satisfied my perfectionistic desire for completeness ahead of time (lol), I’ll move forward…
As mentioned before, I’ve been writing this post series because sometimes it’s difficult to make sense of the academic/psychological terminology used in the official criteria, and it can be hard (at least, it was for me and a few others I know) for us to translate that strange-sounding terminology into real traits expressed in real people in real life. And sometimes, that application is not always obvious.
So my goal is to “keep it real”…or in this case, “make it real”. Or at least, to shine a brighter, clearer light on what all of this jargon means.
Because after all, for those of us who are going through the formal Asperger’s/autism diagnostic process (or who are considering it), we’re going to be measured up against these criteria. A competent and reliable diagnostic profession is going to hold our “symptoms” and traits under careful scrutiny. That scrutiny isn’t a bad thing; in fact, it’s good–it’s necessary for an accurate diagnosis, which is what people going through the process of getting a formal diagnosis are after; what good is any formal diagnosis if it isn’t even accurate?
Anyway… For those for whom this is the first post they’ve seen so far, I’ll re-state my two-fold goal in writing this series:
- To get the details of my own case in lucid, coherent writing to use during any time(s) when my words escape me or I develop a sudden (temporary) hole in my memory
- To provide one anecdotal human example of how these criteria may “express themselves” in real life, in hopes that it helps others on their own path/journey. (Obviously, this second part of my motive is much more important)…
The United States (and a few other parts of the world) uses the DSM-V as the final say-so in autism diagnosis; these criteria are spelled out on the US CDC’s website (specific link to CDC’s autism criteria). There are 5 parts, labeled A through E. All of these parts must be properly satisfied in order to be formally/officially diagnosed with autism. Parts A, B, and C have been covered previously in this series, and Part E has been satisfied above, so here we go with Part D.
Part D of these autistic criteria states: “Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.”
This, says one of my diagnostic professionals, is where a lot of people “get tripped up”: they may satisfy everything spelled out in Parts A through C and have very strong traits, but in order to be formally diagnosed, these traits have to impair or limit them in some way, and preferably (for diagnostic purposes) across multiple areas of life, and they may not experience impairment, per se, (i.e., difficulty or challenge in their everyday lives) and thus, they wouldn’t satisfy the official diagnostic criteria.
Twenty years ago (I’m 39 now), if anyone had asked me whether or not my introversion, analytical mind, perfectionism, or other quirks interfered with my everyday life or limited me in some way, I probably would have looked at them as if they had suddenly sprouted another head. After all, I had a few great friends, I was early into (and still enjoying) my stint as a cocktail waitress at the time, and, since Grades 5 and 6, I had put away that shy Wallflower Girl once and for all.
I Was Social Now, (I had sternly reminded myself).
I passed for “normal”.
I wasn’t “weird”, dammit!
My, how the human mind can deceive itself.
That’s because I was a young adult, in my social and energetic prime. In my most recent post, I mentioned something of a “Bell Curve” phenomena that I’ve noticed, relating to my ability to “act” “normal” while out and about, attempting to “function” and interact with the world at large. This Bell Curve will get its own post, but suffice it to say, for the purposes of this one, that gradually, over the past few (three? Seven? Ten?) years, I’ve experienced a noticeable drop in my ability to “mask” or hide what/who I am, and “act” like what/who I’m not.
I can’t pinpoint exactly when it started. Hell, I’m not even sure I was all that successful at all this “masking” and “acting”, even when I felt, looking back, that my performance skills were at their peak. I do know–and the people closest to me have corroborated–that the impact of my neurotype on my everyday life has (once again) grown steadily more significant.
Over the past several years (and especially the past several months), I have gradually become acutely more aware of certain undeniable limitations, deficits, shortcomings, and impairments that come as a package deal with my Asperger’s neurotype. I began to become aware of what I called “quirks”, “oddities”, etc much more sharply in recent years. Until about six or seven months ago, I had no clue about how to explain them, because their true origin and nature (Asperger’s) was completely unknown to me (cue the previous bath of self-beratement…).
I’ve had a chance to ponder these limitations/impairments.
And I’ve realized just how pervasively they’ve impacted my life, leaving no aspect of my life without their imprint.
I did notice them in school (and on some level, so did everyone else). From kindergarten on, I had issues adjusting to the chaotic and overwhelming environment, consisting of too many people, too many visual stimuli through the classroom, and too abrupt a switch between activities…
…come to think of it, this “too abrupt a switch between activities” actually probably posed some previously-forgotten reasons for being scolded by my early teachers. It probably got misinterpreted as “failing to follow directions”.
Teacher: “Silent Wave, why are you still playing with crayons? It’s time to play ‘Simon Says’ now.”
Me, inwardly (and of course, paraphrasing my basic sentiment with my adult vocabulary): Fuck ‘Simon Says’. I wasn’t done with the crayons; I’m still coloring the purple band on my rainbow, dammit.
As I progressed through my K-12 school career, I found it impossible to 1) motivate myself to 2) concentrate on my daily work and homework assignments. I had an immense mental block when it came to doing something I wasn’t interested in. This brought down practically all my grades/marks in school; even the classes I was otherwise earning “A”s in were negatively impacted by that “daily work/homework” component.
Once in college/university, I found myself changing degree programs no less than eight times. What would it be this semester? Business? Theater? Psychology? Computer science? Music? Economics? History? All of those areas of study relaxed into hobby-only status, while I chose a previously-foreign subject, seemingly out of the blue: pre-med.
I loved the material! But once in pre-med (and especially in med school), I noticed deficits in my abilities to learn, absorb, and remember information. By then, I had long-since (successfully) disciplined myself to do all assigned work, study for exams in manageable “chunks”, beginning well in advance so as not to have to “cram”, and so on. However, I lamented repeatedly and in pure frustration and agony that the printed slides and textbook excerpts were merely “words on a page” that “meant nothing” and “because I have no meaning to attach to this information, it’s not sticking!!”
(Commence with another self-beating…)
I’ve noticed impairments, both throughout my employment history and in my current professional career.
In my pre-professional jobs, I would get burned out fairly frequently. It wasn’t laziness, or even boredom. I’m not lazy, and I don’t mind “menial”, “mundane”, or “tedious” jobs. It was more of a combination of several elements, which varied depending on the job and its particulars:
- high-stress environment (usually having to interact with too many people or deal with caustic, judgmental coworkers/bosses in a rough and hard environment),
- a lack of control over my schedule (I hated feeling like I was at someone else’s mercy/whim every week or month) and thus I couldn’t sufficiently prepare or plan anything)
- a “culture clash” between my reflective introversion and sensitivity, versus everyone else’s extroversion and oneupmanship; I never fit in, and it was hard work to try and act like I did
- sensory issues in my environment (loud noise, strobe lights, perfumes, smoke smells in bars/clubs/pubs, flickering fluorescent lights, etc)
Currently, with my acting and masking ability (or willingness? Or both?) waning, the limitations/impairments are becoming more noticeable. I think that at this point, I’m more aware of them than other people are; but they might be more aware of them than I currently realize. (Cue the embarrassment…)
The only way I’ve been able to survive with my sanity intact is by having reached a few “coping” skills (usually in response to a stressful or painful situation). I’ve enacted rigid procedures and over-thought policies, having weighed pros and cons, played devil’s advocate, sought opinions from my partner (and assistants when applicable), and spent several hours dragging through every aspect of the dilemma and its solutions before making the final decision. It’s these dilemmas and thought-sessions that sprout these policies and procedures.
I’ve learned to screen my clientele much more carefully. I’ve come to realize that I simply can’t handle or deal with certain types of people. These include the “I’m married to my disease/disability” set (if it becomes too much a part of their identity, there’s nothing I can do to get them better; subconsciously, they ultimately don’t want to get better, and I can’t–and won’t–compete with that), the attention/sympathy-seeking set, the drama-king/queens, the potentially litigious type, the confrontational type (sarcastic ‘bonus points’ for those who selectively read your agreement, try to use some of it against you when it’s to their advantage, and completely ignore the other parts), or whiny people who come up with excuses and objections to your solutions because they aren’t ready to do what it takes to improve their lives. (“But I can’t avoid gluten!” they whine. Oh yes you can. In fact, it has never been easier to do so than these days!)
Why do I screen those people out so adamantly? Because my own energy, tolerance, and flexibility has waned. I no longer have the reserves and resilience to deal with these types of people in my work; either they’re already on board, prepared to do what it takes, and willing to listen and take action….or they’re not. And if they’re not, I don’t have the energy it would take to try and brow-beat them toward being ready. I seem impatient, and I probably am. I seem judgmental, and I can honestly (to the best of my consciousness) that I’m not. I don’t typically judge the people themselves–they’re seeking help; I simply make a judgment call on whether or not we’re the right “fit”.
My scheduling procedure is just as rigid. This is because each and every meeting with clientele brings anxiety, even if they’re the sweetest, smartest, most cooperative person on the planet, and even if they’re making remarkable success. The very idea of interacting with someone causes an immense pressure, probably a product of that Aspie/autistic social awkwardness. When meeting with someone, my brain has to switch into a very foreign mode, and very quickly. It now has to be “on”, at full capacity and high alert. I’m talking, live and in real-time, with an actual person, a person whose mind I can’t control. I can’t control the content of their thoughts or the speed or timing of their expression. I have to be ready for absolutely anything. I may have to answer a sudden question, just like that. This is nerve-wracking! It’s hard for me to “just” give a brief answer to (what seems like) a “quick” question. (No question is ever “quick”, by the way. Not when your doctor is also an Aspie! 🙂 )
Neurotypical thought processes are not systematic or linear, either; they’re kind of all over the map. Talk about taxing my mental agility skills…which I often have, but not when interacting with people. This is why I don’t do acute care or emergency work; it too tough for me to make snap decisions, “shooting from the hip”. I would simply not have enough details–or time–to make a proper decision. Anything else would feel incomplete to me. (Thus, there’s no way I can just “see people unexpectedly later that day”; I need to mentally prepare. I’m forced to fit that person in during a time when I’m already seeing other clientele so that I’m in that “mode” and I don’t look incompetent, scattered, or “ditzy”.) Giving quick “incomplete” answers and/or meeting with someone without full preparation would wouldn’t be compatible with my perfectionism. The thought of coming across as incompetent or inept is a source of anxiety.
When meeting with someone in person, there are other issues, too, such as the “usual suspects” like making and maintaining eye contact, shaking hands, avoiding staring, or the problem of talking too fast (which I do, since my brain is racing as it is). Sometimes my brain races so far ahead of my words, that my speaking ability may internally say to itself, “screw it; the internal thought got too far ahead” and my words might drop out of the picture all together. This, too, might make me look incompetent or inept (cue the anxiety…)
My impaired ability to task-switch (i.e., disengage from one activity, such as reading or writing something, and then engage in another, such as responding to someone who has just come into your office to talk to you) has become a serious and frequent issue over the years; I’m sure that this particular “quirk” has been a source of discord between myself and various coworkers/office staff, and may very likely have played some sort of role in the departure of several assistants over the years.
And when I fail, despite giving the best of my ability, various criticism rains down, and taking criticism, especially in my professional life, has always been nearly impossible, without some kind of meltdown or shutdown (or both).
These impairments don’t just affect my job/career. They affect me personally, too.
My apartment is cluttered, mostly because it’s overwhelming to me and my planning and executing abilities sucks. The disorganization sucks and the clutter is extremely overwhelming and anxiety-inducing. I need a housekeeper, but can’t afford one, even part-time or sporadically. Maybe elves….?
My time-management is hit-and-miss; occasionally, it’s exceptionally good. But a lot of the time, I’m completely lost and useless without my “to-do” list. On those “lost” days, my time management sucks.
Hygiene was an issue, since I don’t like the feeling of water on my skin and the bathtub is simply cramped and uncomfortable. My workaround is to apply a bunch of soap, shampoo, body wash, etc (whichever is applicable), on a washcloth and lather it up fairly well, and then apply to my (previously-dry) body. Then I dry myself off like anyone else would. As for my hair–I grin and bear it. Luckily I have dry hair and a not-oily-not-dry scalp, so I can get away with not washing it for a while.
Driving is my nemesis. Way too much stimuli, and it’s absolutely imperative that I remain fully engaged for the entire time. Of course, it’s not as easy as focusing on one thing; my attention must be flexible enough to focus on a constantly-moving target, second-by-second. One second, the most immediate issue is the car in front of me; a split-second later, it’s the car on my left…until the car on my right starts to look like they’re slowly drifting into my lane. Now I have some critical decisions to make: can I move into the left lane yet to evade this invading right-hand car? Or can I slow down to provide space for the right-hand car to wander? Do I hit the horn to try to jolt the right-hand car back to reality? (Well, yeah–the horn-honking is a given; we can safely assume that’s going to happen.) So yeah, driving sucks.
I’ve reviewed my issues making and maintaining friends in Part A of the diagnostic criteria post series, so I won’t repeat myself here. 🙂
But there are other aspects, too.
Going out and about in general sucks. I mean, it’s kind of fun, to go cruising around and just hanging out, listening to music, being with friends, etc. But it is so…damn…tiring. I never forget how tiring it is, and thus, it’s been harder and harder for me to “muster up” the motivation to even go out. This is true whether we’re going out with two friends for lunch or dinner (total of four people–three introverts, and one nice extrovert), going to a concert, or even going to the town’s botanical garden exhibit. My partner and I go shopping as I team; I drive (since he’s legally blind and can’t do so), and he shops (he can see enough to do that; I try to preserve my energy reserves by hanging out in the truck until he comes back; when he returns with the groceries, we drive home).
With all of the energy it takes to administer a business, meet with clientele, do the driving for not one but two people, etc, it’s absolutely crucial that I get plenty of “downtime” to recharge that energy. If I don’t, my time management and planning skills suffer further, my anxiety and fatigue escalate, and I’m at much higher risk of meltdowns and shutdowns. Meltdowns for me are the ultimate in loss-of-control and subsequent embarrassment. I’ve seriously hurt people and damaged relationships that way.
Other ways I’ve hurt people is by saying something the wrong way (seen as tactless, even though I wasn’t trying to be hurtful), coming across as judgmental (especially in situations where I feel I’m just telling the truth), or I’ve declined an invitation to go out probably too often and some people might feel put off, as though I’m avoiding them. Communication is dicey, too; on one hand, I can’t help interrupting people, and I get embarrassed when I do it; on the other hand, I can’t stand being interrupted, because it makes me lose my train of thought (which is embarrassing). This irritates me more than a little bit, and then I get embarrassed about being irritated, too.
Getting together with close friends and close immediate family, although variably challenging (sometimes insurmountable, other times no problem), can be doable. Extended family is another story. I’ve always felt like an outsider, relatively insignificant, and always overwhelmed by the people, the noise, the food, the pressure (both internal and external), and just about everything else.
Although this falls under “Social”, relationships and marriage could be considered a special/specific type, so I’m giving it its own category. I’ve had plenty of issues in this area, and some of them could be attributed to Asperger’s/autism.
Of course, my unusual personal habits (pertaining to self-care) have raised a few eyebrows. My mental block toward house-cleaning has certainly caused some irritation. My low stress threshold and the ease of which I become overwhelmed has caused my partner to maintain a stubborn belief that I have “anger issues” until very recently. If a task is not already incorporated into my routine, it may not end up getting done; this includes reviewing our finances together, and this has caused some serious issues regarding “financial infidelity” on the part of my partner. That financial infidelity is not my fault and I know I’m not to blame for it (my partner is), but I suspect that my Aspergian routine-tethered tendencies have provided fertile ground for my partner to engage in that deception. I made it too easy by not keeping track.
And of course, I suspect that my partner feels sort of like “my keeper” in a way, because I lean on him a lot. I ask him to do things that I can’t bring myself to do, like make stressful or unpleasant phone calls, or handle paying the bills and staying on top of our bank accounts, or doing the grocery shopping when I’m too exhausted to consider entering such a stimulating people-filled place. He also does the cooking, because I’d be a disaster in the kitchen. And of course, I probably wouldn’t be financially self-sufficient without having his income to add to mine. I make money, but not enough to support myself on my own. I may appear to be an independent “regular” adult, but in truth, I’m dependent on him. The thought of any kind of separation or any tragedy striking us/him petrifies me. (Which is probably why I had put up with the financial infidelity, a lack of affection, a lack of effective communication, and his secretiveness for years in the first place.)
I instinctively realize that I’m extremely limited in the type of partner that I could handle, as well as the type of partner who could handle me. It takes an intelligent, passive-yet-strong, and tolerant/accommodating type. It also takes a fellow introvert; extroversion intimidates me. They also have to like cats; that’s imperative, because my cats and I have always been a package deal.
I’ve been acutely aware of these specifications and limitations for about 20 years.
There are other miscellaneous aspects of Asperger’s that pose their various challenges. My clumsiness has broken objects, knocked things off of surfaces (after which they’ve rolled under other furniture or items and out of view), and been an ongoing source of frustration. Sleep is extremely affected (I’m all over the map), but not wholly by being on the spectrum; there are other factors at play there. However, my neurotype doesn’t help the situation. Because of the downtime I need to take (especially these days), I can’t do some things I want like go on road trips. I have the time on weekends to do so, but not the energy or the motivation. I need that much recharge time, and I need it that badly.
I’ve often said that I don’t see Asperger’s itself as solely a disability (i.e., that’s not all it is), which is my personal opinion only, a conclusion based on my own observations and reading books written by contemporary experts who register both on and off the autism spectrum themselves. However, there is indeed significant a limiting, impairing, and disabling aspect. Some of the very traits that give us advantages also cause issues for us. And sometimes, as we “mask” and “act”, we may forget about those limitations and impairments. That doesn’t mean they’re not there. And as my own abilities to mask and act begin to fade, I feel those impairments sneaking back out of the shadows, moving in formation to block my path.
That’s what my planned, Asperger’s lensed coaching and therapy strategies will be for; to address those impairments and shine anyway. 🙂
This post probably contains a whack-ton of errors/typos/etc; I’ve reached blog-exhaustion for a little bit (lol), so I’ll come back and make edits/corrections/clarifications later on, as soon as I’m recharged. 🙂
(Image Credit: Cyril Rolando)