"You Know What I meant" (Things You Should Never Say to ND People)

 

 I swear to all that is holy, I get SO fucking tired of people saying stupid shit to me (or anyone) because of their own mental landscape and assumptions about mine/"everybody's"!

There are ALL kinds of reasons someone might not understand the world, language, customs, culture, "truths", or anything else in the same ways. Some of those reasons have to do with being from different places, socio-economic classes, or other different types of upbringings, and some of them have to do with brain wiring. 

I am specifically referring to ND people here, but really, why would you say this kind of thing to anyone, as though you can read their thoughts and feelings?

So, what follows is a beginning list of things you should not say to people unless you are DAMN sure you are correct (Based on empirical fact, not your assumptions, filters, or feelings!). And once you are sure, double and triple check. Or, just don't assume, period. There's an idea!

• You know what I meant.
• Everybody knows that. 
• That is obvious.
• Don't be obtuse.
• Don't play dumb.
• You're so smart. You couldn't possibly [insert dumbass assumption here].
• You're just being lazy
• If it were a priority, you would remember. 
• You have selective [memory loss/hearing/reading/understanding/etc]. 
• You obviously [insert dumbass assumption here].

This is most certainly an incomplete list, and I will add to it as needed. If you have something to add to it, please let me know in the comments!

Neuro-di-What?? (Why and How to navigate the brain workings that make me who and how I am)

So, as noted in various places in my profile and other pages, I have "non stock factory options" in my brain wiring. They have official names, but I often refer to them as my alphabet soup diagnoses. 

Any one of them puts a person into the "neurodivergent", or, "neurodiverse" (ND) category, and, interestingly, most of them can be managed in really similar ways, both by the individual, and by those with whom they interact. They are also all frequently co-morbid conditions, meaning, two or more of them often occur together.

Any or all of them can occur in people of any intelligence level. Being smart doesn't keep you from having a differently wired brain. In fact, many studies suggest that a high percentage of ND people have higher than typical intelligence.  

Any and all of them also come with some quirks that are often difficult for neurotypical (NT) people to understand, and may well be annoying, distracting, confusing, or otherwise discomfiting.   

What follows is a not necessarily complete list of my own ND diagnoses, and my experiences, observations, and notes for NT people on navigating them.

ADHD (Combined, severe)

If you know me, even at all, you'll likely recognise almost ALL of traits and symptoms on this page. 

If you don't really know me, well...that all describes me pretty aptly. To the point that I'm not even bothering to write out most of the things I do associated with this one, as it would be redundant. Just read the page and then come back. 

So, yeah. I do/experience pretty much all that stuff. Yes, it can be terribly annoying. It's not on purpose, and I can only minimally control bits of it. 

Some of them, like organising and remembering tasks, appointments, and routines, I cope with the aid of computer programs and apps that remind me, automate certain tasks, and help me keep track. I still need reminders to stay on task, even with all the tools I use to try and manage. Some of them, interestingly enough, are mitigated my some of my other "conditions". Cool, huh? I think so. 

Anyway, moving along...

I need to multitask most of the time in order to focus my brain on a particular thing. Otherwise, it wanders off too easily. I usually can't just focus on ONE thing except in really extreme situations. I'm almost always listening to (loud!) music when I'm studying, working, doing homework, writing, etc. That occupies the parts of my brain that try to wander off, so I can use the other parts to pay attention. I understand that it might not make sense to you, but that's just how some brains work. When watching a film or listening to a lecture, or anything similar, like a presentation, class, workshop, etc, I'm drawing, fidgeting, fiddling with something, and/or frequently looking around or away from the speaker. That doesn't mean I'm not paying attention. 

If I am sitting still and appear to be looking at you with rapt attention the entire time (often after being chastised for not doing so), you can almost guarantee that my mind and thoughts are a million miles away, and I'm not taking in anything you are saying/showing. It takes up too much of my attention to focus on arranging my face and body to look like I'm "paying attention", and I don't have enough left to actually pay attention.

If you are not sure I am paying attention, ask me, politely. Like, "Hey Khaos, are you still with us?", in a non-accusing/non-sarcastic tone. If I say I am, or nod, or thumbs up, or any other "yes" indication, then I am. If you decide to challenge or "test" me, by asking some question(s) about what you were saying, don't get all pissy when I recite it back to you, possibly verbatim. You are the one who chose not to take me at my word, and risked being shown up. That's on you - NOT me. Own it. 

If I'm tapping the desk, clicking a pen, making a repetitive noise, etc, you can ask me to stop or just ignore it. If you ask me to stop, I will, but I'll probably start doing it again only moments later. Sometimes, you can suggest a using a different (non clicky) pen, for instance, or using some other (quieter) fidget thing to keep me occupied without bugging people, but sometimes it just can't be helped. I cannot control the impulse. It is not about willpower any more than I can will my diabetic pancreas to produce insulin, or a quadriplegic person can will themselves to get up and dance, or someone with bad allergies can keep from sneezing. It's not happening. It's outside of our control. If you try to insist I stop, or kick me out of a class or whatever for it, you are just as much as a butthole (and are breaking the law just as much, if it's any kind of official/public thing) as if you kicked out the quadriplegic person for not standing up when everyone is supposed to do so. Don't be a butthole. 

ASD

The term autism was changed to autism spectrum disorder in 2013 by the American Psychiatric Association. ASD is now an umbrella term that covers the following conditions:

   • Autistic disorder.
   • Pervasive developmental disorder — not otherwise specified (PDD-NOS).
   • Asperger syndrome.

[Quote Source]

 I am on the autism spectrum. I am what is commonly (informally - it's not medically recognised) known as, "high functioning", meaning I am able to read, write, speak, and manage life skills without much assistance. 

Of course, that is referring to life skills needed to survive - not necessarily the ones needed to thrive in society, school, the workplace, relationships, using the phone etc. those are a little tricker. 

It's a really common misconception that there are clear cut "levels" of functioning autism, or that most people on the autism spectrum have one or two "super gifted" areas, and are severely developmentally delayed everywhere else. The truth is that a person can be really "high functioning" in some areas, and positively dismal in others, and there is no "norm". That said, there are a great many commonalities - things that many or most on the spectrum experience at least to some degree. 

 In my case, that includes:

Random hand/arm flapping, weird noises I don't know I'm making, singing stuff instead of saying them for no apparent reason, taking things too literally, not understanding subtext or non-verbal cues, not knowing things that are "obvious" or, "everybody knows", or the flip side of that, thinking that things are obvious to everyone, when they are not. 

I say things in straightforward ways, often lacking in tact. If I say something, that is generally exactly what I mean. I don't use subtext any more than I understand it, most of the time. Sometimes my apparent or actual emotional reaction (or lack thereof) to things is not the expected one. 

If you say something that is not exactly, PRECISELY what you meant, in clear wording, or that could be heard or read in another way, and I don't seem to understand, or I seem to understand differently from what you mean, I am not being deliberately obtuse.

Do not say, "You know what I meant", to me (or anyone!), when I ask for clarification or misinterpret something you said. If I asked, then I am straight up telling you that I don't know what you meant. I REALLLLY dislike being called a liar. Most people do. Would you like it if I insisted that you meant something different than what you did, because that's how I "heard" it? No? then don't assume I "heard" something the way you meant. It's rude. Speaking of rude, people on the autism spectrum frequently have very different ideas of what is or isn't rude (or "normal") than neurotypical people, and I am no exception. If I get it wrong, just tell me plainly. Like, "[Thing] usually is/isn't considered rude by most people". Unlike, "Everybody knows [X]", it actually tells me something in a factual way, rather than an untrue, illogical, and unhelpful statement. There is NOTHING in this world that everybody knows. That is a fact. 

Oh yeah. ASD folks tend to be really caught up in facts and technicalities. That goes along with the taking stuff literally or nitpicking minor details. We don't do it to annoy you. We don't necessarily even know it will annoy you until after the fact - no matter how many times it has annoyed you or others in the past. The information just resets. That happens with all kinds of information. 

That, or I (we/other ASD peeps) will apply rules learned in a specific encounter to all future encounters that are the same or very similar. 

So, if I approach you and you say, "leave me alone", without specifying an end time or specific condition, I'm probably going to leave you alone until you tell me to stop leaving you alone. We can be kind of like computer programs. You have to be very specific, cause we are likely to do EXACTLY what you said. No more and no less. That's another place where, "You know what I meant" is worse than useless.

It's worth noting that lots of these overlap with symptoms of other things listed on this page. I'm pretty sure that isn't a coincidence. I will not be in the least bit surprised if, some point down the road, science determines that all or some of these "separate" conditions are, in fact, just parts of a spectrum of their own, along with a variety of other frontal lobe issues. But that's another post entirely!

I'm sure I left out some things, and I will probably edit this post in the future, as needed.

Dyslexia/Dyscalculia

While I have been previously diagnosed with dyslexia, the current definitions are a bit different from what they used to be, and this may well be symptoms of something else, but I'm just going to put it here anyway, until/unless I find a better place to put them. 

I transpose or otherwise scramble letters, numbers, and words. I can read and re-read it a bazillion times and still not see the mistake until it is specifically pointed out to me. My brain auto-corrects for me, and I see it correctly. That means that I can read very quickly, even when there are typos, but that I may take a little longer to correctly type or write something, or may have to ask someone to repeat a spelling or sequence of letters or numbers multiple times, and STILL might not get it right. It isn't because I'm stupid, nor does being smart in any way guard against it.
  

Chronic Motor Tic (similar to Tourette's)

 I randomly shake my head. It looks like a "no" head shake, most of the time. It isn't. Even if the timing seemed way too coincidental to be anything but, it isn't. If I disagree with you, I will politely TELL you, not do some ridiculous, passive-aggressive thing that makes me look like a spazz. If I tell you it is a tic, it's a tic. Accept it and freaking MOVE ON and just try to ignore it! Yes, it can be distracting, off-putting, annoying, and lots of other adjectives with negative connotations. And yes, when I notice it, I can sometimes keep from doing it for a while. Of course, as with the "looking attentive" thing described above, it takes the majority of my concentration, and eventually, the ... whatever it is in my brain that makes me do it will win and I'll do it anyway, usually even more than I would have if I didn't try to control it. And, like the earlier examples, I will not have been able to pay attention to anything else the entire time, as all my attention was devoted to not shaking my head. And why, again? Oh yeah - To keep you from being uncomfortable and/or feeling like I wasn't paying attention.

OCP/D

There are differing views on whether it is considered a "disorder", if it does not significantly impair one's activities of daily living. Newer schools of thought use the term, "obsessive/compulsive personality", if a person has enough of the traits, but they do not unduly interfere with their life. I'm on board with that! In fact, I prefer the term one clinician offered several years ago: "detail oriented". That reads more like a resume skill than a defect! I like it! And, despite the fact that those of us who have an especially high degree of attention to detail can truly be annoying to those who don't, there is no denying that it truly IS also a valuable skill in the right situations!

In summary:

I can dial back on many of the traits associated with my various "conditions", but it isn't my first instinct or impulse. I need reminders and often have to make a concerted attempt to do so. That is MUCH more true when I do not, personally see a benefit to or logic in doing so. The fact that someone says I "should" is NOT a logical reason, to my mind to make the often immense efforts to change something that works just fine for me. 

This isn't about me being selfish or self centred. It is about how my brain is wired, and how I process information. That means that I tend to need things having to do with emotional sorts of things spelled out to me at the base level in order to see the reason in them, even if they are not strictly logical.

I don't routinely do illogical things just to make my self have fluffy feelings, so it does not occur to me that I should do so for anyone else either. Not because I'm an egotistical jerk, but because I don't feel any lacking for these fluffy feelings myself, and I have difficulty remembering that other people do. When I am reminded - nicely, in a non-accusatory manner, I am almost always happy to make the effort. 

And I'll already feel bad for not remembering (yet again), when reminded nicely. So you don't need to rub it in. No, really, DON'T fucking rub it in! It won't help me remember the next time. It will just make me feel like the most worthless and horrible piece of shit person on the planet - until I forget again. And if that is something you feel ok about doing, well, we cannot be friends, because you're a worthless and horrible piece of shit person.

Non Stock Factory Options

 I learned a new word a while back.

"Neurodivergent."

No one had ever called me that before. I've been called plenty of things as a kid, growing up - by parents, school teachers, counsellors, nurses coaches, and principals, other kids, child development "professionals"... The list goes on.

Lazy, crazy, twitchy, spazz, stupid, moron, idiot, wilfully disobedient, bad seed, inappropriate, unruly, disrespectful, doesn't listen, doesn't pay attention, chatterbox, Chatty Cathy, rude, no respect for authority, never shuts up, defiant, disturbed, damaged, failure to socialise properly, outcast, abnormal, makes "idiot noises", liar... That list goes on too.

I fidgeted all the time. I interrupted. I  couldn't moderate my volume, sit still, stay calm, or seem to pay attention when I was supposed to. I made funny noises and randomly shook my head like I was saying, "no". And the more I got in trouble for doing it, the less I could stop it happening. Usually when an adult was scolding me, then scolding me some more for shaking my head, "no" at them, and then upping the ante when I was "obviously lying" by denying that I was telling them no. And "refusing" to stop doing all those bad things, no matter how many times I was told, how dire the threats of consequences were, or how often or severely I was punished. I just would not stop. They couldn't scold, reason, cajole, bribe, or beat it out of me. Clearly, I was just a bad kid who refused to learn her lesson, and so defiant that the more I got in trouble, the worse I "acted out". A lost cause. "So much potential, cause she is SO smart, but..."

Then, decades later, new terms and some alphabet soup;

"Chronic Motor Tic", "ASD", "ADHD (Combined, severe)", "dyslexia", "OCP/D"...

"Disability", "Illness", "Syndrome"...

"Disorder".

It turns out I wasn't "acting out" all those years after all. All that time, I was telling the truth! Who knew? (I did! But who can trust a child to tell the truth? Especially a bad child who refuses to mind.)

With each new label, a new understanding of what is wrong with me. Reasons why I am broken, and how it might be worked around. Not fixed, because these defects have no cures - only crutches to help us get by in the world better. As less of a detriment to society. To fit in better. Appear more "normal".

These, at least, were better than the old labels. Not ideal, but better, at least, than having no idea why it seemed like I could never do things right. Why the harder I tried, the more I failed, and the more I just pissed people off and got in trouble. At least, here were reasons for my failures. Why I am the way I am. Why I'm such a fuckup.

And don't get me wrong. The tools I've discovered for coping with my diagnoses have been invaluable! Just having words to frame it so people understand that certain things are just not in my control in the same ways they might be for others has been an immense relief. So has being able to talk with others like me, who share common communication styles and totally understand my "glitches".

But I kept thinking, and saying, to anyone who would listen, that maybe we're not really defective. Maybe we're just different models, but most people are reading the manual for the standard, stock model, and therefore assuming the deviations are malfunctions. What if the manual just needs to be updated and expanded to include the variations?

And then I learned this other new word...

It turns out I'm not the only one who thought of expanding the manual, as it were. And the idea - or at least the public sharing of it, is actually more than twenty years old!! A social Scientist named Judy Singer  coined the term, "Neurodiversity", way back in 1996! Then she wrote an entire book about it in 2017.

So, why? 

Why am I just now hearing about any of this halfway through 2021? Why have most people never even heard of the concept? 

And why, when the scientific community now knows that 12.5% of the population (and some research puts the number closer to 20-30%) are some form of "neurodivergent", is it even considered that "divergent" at all?

 To put that in perspective, redheads comprise about 1-2% of the population. 

That's at least six times more anomalous than "neurodivergent" people. Yet we don't regard that as a disorder. We simply understand that red haired people are probably more prone to sunburn, tend to have freckles, and don't wear certain colours so well.

It's common knowledge. No one (except Eric Cartman) is trying to find cures for "ginger disease", and no official requests for reasonable accommodation are required. It's just part of normal. 

So why can't I just be part of normal?

Management Vs Macro-management Vs Micromanagement (Extreme or otherwise)

An Excerpt from the “Khaos Management User Guide”*, Addressed to Doms

Those words and the spaces in between them mean a wide scope of different things to different people. 
 As such, when used without clarification, a whole host of misunderstandings can occur. This writing is an explanation of what they mean to me and regarding me, and, more specifically, some things that do (and don't) work well for managing me, as well as some more explanations about how my brain works, and understanding some of the things that I do that might piss you off, but are NOT deliberate (and how to shut them down effectively)! 

When I think of micromanagement, I tend to think of things like the following:

• Asking permission for EVERYTHING, from getting out of (or into) bed, putting on clothing, going to the bathroom, using furniture, eating, or drinking, to leaving the house, going on a trip, talking with a friend, getting a haircut, etc.

• Being told specifically what/when/how to dress, style one's hair or makeup, groom and bathe, etc. I don't mean once in a while, or, "I want you to shave your legs/touch up your hair/get a trim today/this week". I mean like, ALWAYS having to be presented just so or having those things specifically dictated each day.

• Being told exactly what and when (like to the minute) to eat, or having very strict dietary parameters in terms of specific foods allowed/forbidden, portion sizes, and similar.

• Having to account for every minute or action of the day 

• Mandatory checking in several times a day and/or having all "free time" dedicated to one person.

• Being constantly monitored/supervised, whether on cam or in person.

• Giving unrestricted access to personal, password protected or other areas that generally have a reasonable expectation of privacy (Social media/email/messaging accounts, phone calls and messages, private conversations, etc.).

These are not the sorts of things I require, nor do really I desire any of them or their like. Some of them, some of the time, on a temporary basis, I could deal with, especially if it is for specific reasons, like reinforcing something, learning a lesson, as a disciplinary tool, or even just as a service because it pleases the D-type. I'm good with pleasing the D-type! I want that! It makes me feel accomplished, useful, and happy!

Not wanting or needing that level of (micro)management does not mean that I am fully self motivating, intuitively know what I should do, or that too much of a "hands off" approach will work with me, though. 

What I need falls more into the category of macro-management.

Likely due to being on the autism spectrum, there are lots of things that many, or even most “neurotypical” people might view as "obvious" that aren't to me. Same goes for hints and cues. More often than not, they fly right over my head. I am usually not deliberately obtuse, and I am honest and forthright, often to a fault, when queried or when I actually realise something should be shared. I am frequently, however, unintentionally obtuse or dense. I wish I weren't. I'm sorry. It is frustrating for me too! As irritating as it can be for you and others to deal with my imperfections, just imagine how I feel, having to deal with them every moment of every heartbeat of every day!

While I don't need to have someone monitoring my every moment and telling me at every turn what I should be doing or am allowed to do right then, I DO need, whether I always want them or not, clear and specific instructions regarding what is expected of me - an outline of what I should be doing regularly, may or may not do, which things require permission, at any given time, or within certain parameters, what exceptions there may be, etc. 

That means, if you say, "keep me informed of things I need to know", without specifying what sorts of things you feel are "need to know", I am left to decide on my own, and may well decide that if I handled something, or you didn't ask about it, or I don't think it is a huge deal (ie: if I am having a bad pain day, or hurt myself, but it didn't require medics or an ER visit, then I don't consider it worth mentioning other than maybe in passing if I wanna vent about it), or.. whatever, I may neglect to mention it, even if it falls into the category of "things you should know", in your mind. Not deliberately - but more out of being unsure. In the absence of clear guidelines and protocols, I am more likely to default to dealing with things or trying to figure them out myself, "not bugging you" with anything short of the impending apocalypse, and/or withdrawing into myself.
 Same goes for communication/staying in touch/checking in. I often don't think to check in unless something major has changed and/or there is something specific to report, and I rarely initiate contact unless I have something in particular to ask/tell the person in question, or I have been specifically instructed to do so. 

So, if you expect me to, say, message you every morning on waking and every night before bed, or X times per day, or to report what I have been doing and/or what daily tasks I have completed, what I have eaten, if my blood sugar has been above/below a certain threshold, etc., I need that spelled out for me. If you tell me to text you every morning, that could mean any time before noon. If you want it to be "by [time]", or, "within [X time units] of waking", each morning, then I need that information. Completion of tasks or assignments also falls into this category. If you want something finished by a certain deadline, or an essay should be a minimum and/or maximum length, or answer/address specific points, or you want a task to accomplish a particular outcome, I need to know. I don't do well with open-ended questions, prompts, or instructions. I am GREAT at problem solving and coming up with a plan for something if there is a specific goal, and I can follow precise instructions, even if I don't know the goal (though I may baulk more at those and need to be ordered to just do it).

Too often, I have heard, "You know what I meant!", when that is not, in fact, the case. I take many things literally, and rely heavily on my very pragmatic sense of logic and reasoning, so, much of the time, I assume you meant exactly what you said - nothing more and nothing less. 
If I ask for clarification, or my obedience doesn't include something that you think is obvious, but was not explicitly stated, then I probably do/did not know what you meant. Tell me, and then I will know, and probably remember it in future. In fact, I will most likely mentally add it to the list of preferences, expectations, or rules for future reference, so if it was just for that instance, you may want to tell me that too! Otherwise, I will probably refer to the last instance for handling circumstances which I believe are similar. So if I texted or called one morning and you were unhappy that I woke you up, or interrupted something, don't be surprised when I wait for you message me first, going forward, unless there is some other instruction already in place.

I don't usually need to be continually told these things, or reminded constantly of each, individual thing, as long as I have a clear list of rules/expectations laid out for me, to which I can refer if I haven't been given specific instructions for a day (or week, or...). I DO somewhat regularly need to be reminded to stay on task.

In addition to the autism spectrum disorder, I have severe, combo type ADHD. That means I tend to space things or get distracted. It isn't exactly that I completely forget them.. It's more like they drop from my radar, usually cause something else – some random sight or sound or thought or even just seemingly nothing – got in the way for the split second it takes to distract me sometimes. The odds of that happening has ABSOLUTELY NOTHING to do with how important or how much of a priority something is. It really doesn't. I will swear this on everything I hold sacred. You may not understand it. You may have trouble believing it. Perhaps you can't even conceive of a mind functioning (or malfunctioning) in that way, but mine does. If you can't come to terms with that, and take me at my word, you may as well just give up on me now, and save us both a lot of time and trouble.

I need a timeline and a roadmap for my days, and need to know you will hold me accountable to them.

If it is important to you that some things be done in a particular order, or if you want something prioritised, I need to know that. Otherwise, I will get things done in whichever way makes the most sense to me and/or works best within my other tasks, my level of pain and/or ability, or whatever else is going on for a given day.

There are a lot of things that may seem like me “just doing whatever I want”, that are really me doing the best I can with the information and orders I have. If you want to know which it is, ask me. I will tell you the truth, or at least the truth as I understand it. Sometimes, deeper introspection leads to discovery that I truly wasn't doing my best to do what I should have been doing, but if I am directed to write an essay or fully explain myself or similar, and still insist that I didn't know better, then trying to force me into “admitting” otherwise is most likely just going to make things worse. I've got a lot of experience in self-introspection, and am unlikely to shy away from a truth just because it is unpalatable. If I refuse to admit to something, even after thorough consideration, it is probably because I've done my due diligence and am telling the unvarnished truth.

At those points, instead of continuing to focus on why I “should” have known or done or understood something differently, it's really best to just clear up the misunderstanding and concentrate on finding a way to make sure I DO understand whatever it is in the future. Trust me... I'm already punishing myself MORE than enough for screwing up. Punishing me more isn't going to fix it. It will just help me feel like an utter failure. And if that is what floats your boat, we are not compatible in the least.

I hope this has been helpful.

* There is, as yet, actually no such thing as the “Khaos Management User Guide”, but this post and the ones linked from it is the closest thing to it. ;)

I HATE the Fecking Telephone!!

I HATE talking on the telephone, unless, for some reason, it is the most efficient (for me) way to accomplish a task. 

I am told that many of the reasons have to do with my being on the autism spectrum, though some of them (I believe) just make sense anyway. 

• I can't think about my responses without awkward silences, usually causing the other person to get mad at me and think I'm ignoring them.
• I don't know when it's my turn to talk (versus the other person pausing for a second), which makes people mad at me for either interrupting or not answering them at the right time. 
• I don't get the conventions regarding when it's time to hang up. I assume once someone has said, "bye", I can hang up, but no... Apparently, I'm actually supposed to wait until I am sure the person doesn't have more to say, even though they signalled the conversation was over by voicing a farewell. Then if I hang up before that, I am rude (again, making people mad at me). So then I am often sitting there in awkward silence (are you seeing a theme here?) waiting for the other person to either say something else or hang up.
• I can't focus on a phone conversation NEARLY as well as I can with a written one. 
• Phone conversations have no archive to refer back to to recall exactly what was said. It is left up to our notoriously faulty memories.