"Faking It"

 

For nearly my entire life, since early childhood, I was punished for many of my "odd behaviours", as though I was making weird noises, fidgeting, losing track of what I was doing, not maintaining eye contact, not showing emotions "properly", speaking in the wrong - or no - "tone", not understanding others' feelings, shaking my head (neural tic), and any number of other quirks, for the sole purpose of upsetting, annoying, inconveniencing, or embarrassing my parents, teachers, and others. Because of this, and, later, when I was old enough to understand that I was "different" from other kids, and, of course, mercilessly bullied for it, I have devoted a huge portion of my energy and efforts toward appearing "normal". 

I have been scolded, advised, taught, and otherwise encouraged to do so by all manner of people claiming to be on my side - who were simply "trying to help me navigate" my sensory disabilities.

None of this "navigation" has ever included simply informing others of said diagnoses and expecting reasonable accommodation. 

Reasonable accommodation for this stuff mainly consists of just not punishing me in any way for not being or appearing "normal". 

No having to move things around, provide a chair, make sure ramps and doorways are up to code and clear, make a normally freight or employees only elevator available, assign an employee to help me with things. Nope. Nothing requiring as much effort as that. JUST not insisting I try harder to "be normal", and/or punishing me when I fail. That's all. 

Well, I recently realised that when any other, more visible, and/or physical disabilities are treated like that, it results in public shaming of the offender at the very least, not to mention the legal remedies available: Lawsuits, firing, requiring diversity education, fines, etc. Cause it's AGAINST THE LAW to discriminate against people based on their disabilities, and that includes denying reasonable accommodation and/or trying to force the disabled person to pretend they don't have a disability and just "act like everyone else", or penalising them because their disabilities are "upsetting" people or "making people uncomfortable". 

Imagine a college instructor telling someone unable to vocally speak that they needed to stop using their text to speech device because it was freaking out the other students. Or having an amputee removed from a restaurant because the other diners were disgusted. Maybe forcing a wheelchair bound person to only shop during certain hours  because their slow progress and taking up extra space in the aisles were inconvenient for other shoppers. None of that is legal in the USA, nor in most other developed countries in this day and age, and, actually, neither is the equivalent behaviour legal regarding other types of disabilities.

So, I decided to stop faking it.

It hasn't been a very popular decision for a lot of people who had gotten accustomed to my constant bending over backward to try and make sure my oddities don't discomfit them in any way. 

Too bad.

It's not on me to use up all my mental/emotional, and sometimes physical resources on just trying to appear "normal", often leaving little or no energy for much of anything else, so my disabilities don't inconvenience others or make them uncomfortable. 

Again, if anyone tried to force someone with an obvious, physical disability to work harder to not seem disabled, in order to avoid inconveniencing or upsetting anyone, depending on the setting, they would be judged harshly, fired, sued, banned from a place, etc. So why should this be any different?

I'm not saying I don't try to mitigate some of the way others can be legitimately affected. I do. I make sure I have quiet fidget toys so I'm less likely to click my pen incessantly and drive everyone nuts. I try really hard to take notes so I don't forget what I was going to say, rather than jumping in and  interrupting someone, and when I accidentally do, I apologise and hush. I try to sit somewhere that my chronic neural tic isn't TOO front and centre and distracting people, as long as it isn't going to keep me from having equal access to whatever. I'm not a selfish, entitled douchebag. I just no longer care to accommodate those who are.

 I am taking my fucking life back, thank you very much!

And, let me tell you; Since making that decision and following through on it, I've been SO much more mentally and emotionally healthy and less stressed. When I just be my normal, quirks and all, explaining what I meant, or that I have sensory processing and neurological issues that can cause X, Y, and Z, I don't have to exhaust myself trying to second guess everything I am going to do or say, trying to figure out if it is "normal", or whether it might be taken the wrong way. 

It's a lot like how I felt when I finally got and started using my mobility scooter to get around, instead of trying to act like I wasn't disabled, and subsequently missing out a huge amount of life, cause I couldn't actually be mobility typical (Did I just make up a new term?), and trying to walk around like I was meant I could not do most things or go most places, cause I ran out of standing up or walking time. With the scooter, I can go nearly anywhere, since ADA laws guarantee my right to do so, even if my scooter takes up extra space, causes people to have to wait for the lift or ramp before they can get on a bus, train, etc, wait for an employee to assist me with something, or the law prevents them from being allowed to block ramps, park in the closer (handicapped) spaces, or other things that might inconvenience them for a few seconds or minutes of their life. 

And, as I began, rather snarkily, I admit, saying things like, "I'm so sorry my disability is such a terrible inconvenience to you. Imagine if you had to deal with it every moment of every day of your life!", to people who bitched, sighed heavily, tapped their feet, or made it otherwise plain that my disabilities were cramping their style, several years ago, I have decided to use similar tactics for those who are unwilling to have a little patience for my less obvious disabilities. 

I feel great about this plan!

Do you?

If so, AWESOME! Welcome to this part of my journey, fellow traveller! Maybe you will even choose to make it yours as well.

If not, oh well. I will care exactly as much about accommodating you as you care about accommodating me. That seems fair.

"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.

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.

What I mean when I say I am a "social flake"

Basically, I'm a hermit at heart.

I have also somewhat recently found out that I am on the autism spectrum, which apparently explains a whole lot of these things.

I can totally enjoy being around people for certain lengths of time, but I require a great deal of solitude in order to stay balanced.

Even if we really connect, exchange some great messages, or even meet up in person and have an awesome time, conversing (or whatever) for hours and hit it off GREAT, that does not mean you are exempt from my tendency to fall off the edge of the world on a somewhat regular basis.

No matter how much I like/love you, how awesome or sexy I think you are, how much I enjoy spending time with you when I get/make the time, it will not magically make me more likely to remember to call, text, instant message, email, or otherwise contact you if I don't have a specific reason for doing so.

"Just to say hi", or chat, or because I'm bored are not reasons that occur to me to get in contact with someone.

If YOU contact ME, I'll respond when I've got a chance and if I'm not busy doing something else, but I usually don't spend much time talking or chatting just for the sake of doing so.

I'm not available 24/7 for non emergencies. I only answer the phone when I feel like it or it's important (those close to me know how to let me know it's important).

Personal emails and messages tend to take low priority, and I get to them after I've dealt with things that I have to deal with first. That means that sometimes they get buried and forgotten until the person reminds me. 

I don't live on Fetlife, FaceBook, or any other social media sites. I'm usually on them for long enough to look at specific things and then I leave the site. If I'm showing as "online" or "available for chat" on any site, I'm probably busy doing something or have accidentally left the tab open.

Even though I am on the computer much of the day, many days, and probably have a chat or IM client open, I am never on the computer or on IM because I am bored. Never. Ever.
 When I'm on the computer, it's because I'm doing something on the computer for a purpose.
That means that I may respond to IMs, but that doesn't mean you automatically have my undivided attention. If you want that, you can ask for it.

Otherwise, I'm likely to be slow in replying or vanish without warning or telling you that I'm going AFK unless we are having some kind of meaningful conversation beyond chit chat. I'm not at the keyboard waiting for someone to say hi to me or notice me. 

 If I'm bored, I'll go read a book, or play with my dogs, or watch a film, or any number of other fun things that don't involve meaningless small talk.

Getting a bunch of "Are you there?", "It says you're online so I know you're here", "Why are you ignoring me", "answer your phone. I know you're awake because...", types of messages or using any kind of "buzz" feature to try and demand my attention will only piss me off and make me far more likely to flat out, deliberately ignore you!

I HATE talking on the telephone for the most part. 

There is no one I call or specifically try to make contact with every, single day other than my Higher Power, and I don't see this changing any time in the foreseeable future.

You will not be the exception to any of this.

So...

If you set stock in your self worth based on other people's actions, especially if, "she hasn't called/messaged/etc me in a long time" translates to, "she hates me/doesn't care/never wants to see me again/etc", then you may want to steer clear of me, because I won't coddle your insecurities or conform my life to fit them.