Goddamn Poster Child for Asperger’s

This is not going to be PC by any stretch of the imagination.

WHY?!  Did NO ONE ever bother to mention to me that I was the goddamn poster child for Asperger’s?

Of course, there was my counselor many years back who seemed to like to mention how there’s a high proportion of people with Asperger’s who work in the computer field.  Which I thought was an odd thing to keep bringing up in the middle of our session.

And then there *were* mentions that others in my family seemed to display characteristics of Asperger’s. . . but they weren’t talking about me, so?

So why didn’t I know?  Oh, yeah.  That’s right.  Because I don’t get what people mean when they’re being indirect or talking around something!  Jiminy Christmas!

Everyone, you have my permission to be very direct and blunt with me.  Just say what is on your goddamn mind and don’t try to drop subtle hints.  I’m *not* going to get that you’re trying to tell me that I smell bad, when you’re talking about how your great Aunt Agnes smells because she doesn’t take enough baths.  I’m going to assume you’re talking about it, because it really bothers you.  Or because you’re really weird.  (Btw, this is not a real life example.  I smell pretty.)

Anyways.

I just thought my issues were because I’m a Gemini Sun conjunct Gemini Jupiter.  Or because it was the end times, and I was ascending.  But who knows.  Maybe they’re all correct.

Just in case you’re like me, and people have been dropping hints because they don’t want to *offend*, but you are still unawares. . . below is a link to a site that I really liked because it’s not the stereotypical descriptions that make no goddamn sense to me (I may need to check for Tourette’s as well) because the reasons given for *why* people with Asperger’s or Autism do what they do, sound like made up or projected bullshit that someone who doesn’t have it would say.

If you’re not offended yet, keep reading.

Here’s the link I’ll be using as my reference for symptoms:  http://taniaannmarshall.wordpress.com/2013/03/26/moving-towards-a-female-profile-the-unique-characteristics-abilities-and-talents-of-asperwomen-adult-women-with-asperger-syndrome/ .  This is more specifically for women who have it, so guys. . . it may not speak to you.  It may not even speak to the women.  I don’t know.  All I know is it speaks to me.

Moving along.

I was going to list the ones that I resonated with. . . but it got a little ridiculous.  Many that I didn’t list, I used to have and they nearly crushed the life out of me. . . but after having put in some serious hard work over the years to overcome them or at least better understand them, I’ve improved a great deal  So, don’t let my current badass self fool you.

May find great difficulty attending/participating in staff meetings, lunch breaks, work social event

OMG.  I have not found the secret or the trick yet to managing this one.  I push myself as much as I can. . . but some days, it’s just not going to happen.

May get stressed if have a lot of work to do in a short amount of time

May become frustrated/stressed if asked to do too many things at once

I have definitely made hardcore progress on this.  But I cannot sustain it indefinitely.  If things don’t get back to normal within a reasonable time, I start going to hell in a handbasket.  I totally did it this last winter at work.  3 Months too long.  I am still recovering.  That was such a dumb move on my part.

Tries very hard to avoid making mistakes, forgetting things

I write and keep lists all over the damn place.  I had gotten really good at being on top of all of my responsibilities. . . but I still stumble and fall periodically and it’s a bitch trying to get myself back in balance.

May have to withdraw, isolate herself or other when overwhelmed by her senses

This is one reason for Jenn’s great disappearing acts from friends.

Has great difficulty asserting herself, asking for help, setting boundaries

Yup.  This has been my main focus in understanding and learning how to do in real life for at least the past two years.

May say “yes” to social events, then later make up an excuse as to why she cannot attend, often staying home in solitude

AKA – Being flakey.  I got sick of being called flakey.  So now I just say no to everything.  Actually, the invites just stopped coming. : )

May offend others by saying what she is thinking, even if she does not mean to

Here’s part of what I was talking about in my post about having a hard time expressing myself without having great opposition from others.

Unusual voice (flat, monotone, high-pitched, child-like)

The first time I was told I tend to speak in a monotone,  I didn’t know what the f#@! they were talking about.  I actually went and listened to my own voicemail several times to try and comprehend how I spoke, sounded different from how others speak.  So I try to be conscious of my tendency to do that and add some *life* to my voice.  But then I just come across sounding like Japanese Anime.

May talk too loudly or too softly, often unaware that she is doing so

“Mom, you’re talking really loud!” or “I’m sorry, Ma’am, I can’t hear what you just said” (which is followed by my Big Girl voice because then I’m upset)

Often surprised when people tell her she has been rude or inappropriate

Not just surprised, but my goddamn feelings are hurt too.

Highly sensitivity, may not be able to listen to or watch the news, violent shows/movies or horror movies, hurt or injured animals, abuse, war, trauma, sensitive to the emotions and “emotional atmosphere” of the environment, referred emotion and psychic “6th sense” abilities, may have strong intuitive and/or psychic abilities

Yes, please. I was highly advised by my counselor when I was 17 to avoid all news.  He got sick of spending the sessions with me crying about something I heard on the news and trying to talk me down off a ledge.

May not be able to tolerate sounds, sights, smells, textures, movement that she dislikes

I have to have special lights in the workplace.  I have a really strong physical reaction to fluorescent lights (and anything 60 Hz flicker rate in general. . . including computer monitors, etc.)  I have noise cancelling headphones so I don’t come unhinged when the noise levels go up.  If someone decides to throw their cigarette butt in my trash can, I have to remove the entire bag and throw it away in another room completely… otherwise I’m distracted by it and can’t focus on work.  I take scissors to anything in my clothing that rubs or scratches me in the wrong way.

What I’m trying to say. . . is that a great deal of my energy in a day goes into just trying to minimize the impact my environment has on me.  Let alone exceling or thriving.  Sensitivity has enormous gifts, but it also brings a hell that few can appreciate or understand.  I *am* able to build up a tolerance for a short time.  So, as long as I get plenty of rest on a regular basis, drink plenty of water, take my vitamins, etc. I can manage through a day for the most part without coming apart.

May have auditory processing issues

There’s a reason I don’t like talking on phones and it’s not because I’m being difficult.  It’s because I have a delay in processing information, and it’s super-emphasized when on the phone.  When someone speaks to me, I tend to echo or repeat it in my head before it fully settles in what was said.  When in person, watching the person speak seems to help me.  On the phone, I can’t see them. . . and more than once I’ve sat on the phone in tears because of frustration with myself.  I have to hyper-focus in order to not have the person repeat what they’ve said multiple times. . . and then the stress of the difficulty causes me to just start getting disoriented and I lose all comprehension abilities.  Email has changed and saved my life.

She may make it a high priority to arrange her life, events, work, and environment to avoid overwhelming, stressful or upsetting situations

If I want to continue to be capable of functioning enough so I can work and providing for my family, I really don’t see what choice I have but to make it a priority.

Feels things deeply, Other people’s moods affect her, especially if they are negative, Tends to be very sensitive to emotional pain, Lives with continual generalized anxiety, bouts of depression that creep up on her,  Difficulty regulating emotions and managing stress

This all feels the same to me (like a big ball of sensitive mess) so I grouped them together.  I have truly, truly made huge strides in this arena in my life.  Thank god.

Naive, honest (often too honest), Emotionally too honest (inability or difficulty hiding true feelings when it would be more socially acceptable to do so)

I’ve tried to be otherwise. . . and it feels like I’m choking myself to death.  So.

A natural born leader, independent, strong-willed, determined and can be highly competitive

Well, WTF?  All of that hot mess listed above. . . but a great leader.  Yes, if I can stop crying into my cheerios long enough, because I can still smell the cat litter even though I just cleaned it. . . then count me in.

Generally lack a strong sense of self, self-esteem and/or identity. May use chameleon-like skills to assimilate and be involved with to a variety of groups or different people over time, in a search for true identity.

Oh hi.  Welcome to Show Me Who You Really Are, related to a lifetime search of “who the hell am I?” in relation to everyone around me

Dislikes change and may find it disorienting and stressful

And yet, I can’t stand to repeat the same mistakes over and over and over. . . and so I rip the rug from under my own feet in order to get out of the rut. . . which brings change to my life . . . which I really do hate.

Highly sensitive to criticism or perceived criticism

This one I don’t get really.  I need for people to be straight with me and direct.  But criticism (yes, even if just perceived), really, really stings.  It’s like I was just slapped hard in the face and brings insta-tears.  I usually am pretty good at stuffing it before anyone sees because it’s embarrassing.  But I’ve never been able to figure out why I respond to it like I do.

Dislikes being observed when having to perform (performance anxiety)

Oh for sure.  If you want to watch me mess something up or go blank. . . start watching me do it.  A switch goes off in my brain and I break into a sweat and most likely wouldn’t be able to give you my name, let alone perform.  I have been actively working on overcoming this one lately.  I even made myself sing a song in front of Jay. . .because the only way I know how to overcome fears… is to hop in and get all comfy with them.

Tend to be very serious, often too serious at times, Is intense in everything she does

I have been asked a bajillion times in the past, “Why do you look so serious?”  O.O  Because I’ve got some serious shit being worked out deep inside of me if you don’t mind, please and thank you.  Really, what’s happening usually is I’m in hyperfocus mode because I’m actively trying to shift and move energy flows within my body. . . I have zero attention capacity left to be thinking about what the hell kind of face I’m making.

Has the ability to feel other people emotions, May “know” or have knowledge of certain things, but no idea how she knows

I believe I just recently brought this up in a previous post when I was trying to understand for myself why people scare me.

Okay. . . that’s like all I can even stand to go through.  If you’re even still awake at this point in the post. . . kudos to you.  Because I’m about to do a faceplant on my keyboard.

I was crying when first reading many of the things because (well, apparently I have no control over my tear ducts anymore) because I don’t know how many times I’ve felt like a crummy person because of it.  I am constantly ruffling feathers and disappointing people left and right, and I’m doing the best I can.  In fact, I feel like I’m in superhero drive every single day of my life – but it feels like others think I’m just half-assing it.

I cannot even begin to express what it feels like to go every single day of your life feeling like you have leaped over the empire state building and for all of it to go unnoticed and be completely insignificant to the rest of the world.

Do you know how many times in the past I’ve been accused of being cold, insensitive, and self-centered?  And I believed them, because I didn’t know that they didn’t know better than me.  So I made it my mission to rip my world of understanding upside down and inside out to understand others and how their perception is separate and different from mine.  And who I am separate from them.

And I get that I’m weird.  And it’s dragged me through 7 levels of hell.  And regardless of whether how I am has a name or not. . . I know there are a lot of people in the world like me going through those same levels of hell.

And I don’t believe it to be a syndrome at all.  I think it’s humanity leveling up.  Because the things I’m forced to learn how to do, have only EVER made me a better person.  We live in a world of unhealthy habits and of unhappy people because we’ve gone way out of balance.  My “syndrome” is forcing me to learn how to rebalance and reconnect to what is really important and even slowing down and taking a breath once in awhile.

When I stop and take a good look at the chaos spiraling out of control on Earth, I seriously have to wonder who it is that *really* has the problems.

Comments

  1. I read the list too. And my god, I do recognize a lot of things too. i knew already that I was a highly sensitive person. But man a lot of recognition here as well, of course not everything, but a lot i do recognize myself in.
    So thank you Jenn.

    Much LOVE,
    Mirjam( Sunshine)

    Like

    • Jennifer Roark says:

      You know Sunshine, you did come to mind when I was reading that website. I was thinking you’d probably relate to a lot of it.

      There’s a couple of other things I wanted to share with you, one from this site ( http://www.hopenetwork.org/Behavioral-Health/Autism/Education/Asperger-s-Syndrome/Myths-about-Asperger-s.aspx#Asperger_s_syndrome_show_affection ) that talks about common myths about Asperger’s:

      “Underneath the Asperger’s syndrome, people with Asperger’s syndrome think and experience the world just like everyone else”

      “The most important basic idea to keep in mind when working with or trying to understand a person who has Asperger’s syndrome is that his nervous system works in a manner that is somewhat different from that of most people. These “wiring” differences tend to create unusual areas of strength and peculiar weaknesses that can lead to many misunderstandings and incompatibilities between the way he sees the world and the expectations that others have for him. For example, processing difficulties can make everyday sensory environments unpleasant and create situations wherein parents, teachers, and peers may feel that the person with Asperger’s syndrome is “just being difficult” or is “making excuses” when he refuses (for example) to wear itchy clothes or to eat red foods.”

      And at this link (hopefully my own spam filters don’t exnay my comment ( http://www.hopenetwork.org/Behavioral-Health/Autism/Education/Asperger-s-Syndrome.aspx ):

      “. . .For example, it is not unusual for people to (often accurately) perceive the person with Asperger’s syndrome as quite bright. They then become frustrated with what appears to be purposefully provocative, disrespectful, or immature behavior. Because the person with Asperger’s syndrome is less able to decipher nonverbal cues that others are becoming irritated or frustrated, these situations often end up in emotional “explosions.” Consequently, the person with Asperger’s Syndrome is yet again reminded of the degree to which he is different from those around him, thus exacerbating a common sense of loneliness, estrangement, and sadness or anger. While the person with Asperger’s syndrome is as capable as anyone of being purposefully rude or disrespectful, the likelihood of misunderstanding is exponentially greater when Asperger’s syndrome is present and the potential emotional damage that can occur is greater. . . ”

      “. . .People with Asperger’s syndrome tend to possess a variety of attributes that create in them an extraordinary level of chronic stress. The aforementioned problems in sensory processing and need for predictability also create a situation in which an environment that is perceived by most as tolerable or even pleasant can be noxious and highly stressful for a person with Asperger’s syndrome. The paradox is that the neurological factors that create this stressful situation are difficult to relate to – much of the stress that is experienced by people with Asperger’s syndrome is likely to seem unreasonable to people with “typical” nervous systems. . .”

      Word up.

      And you are so very welcome, Sunshine. I know how you struggle.

      Like

  2. So funny, I’m going through the same process and I even wrote out an itemized list of responses just like you did!

    Like

    • Jennifer Roark says:

      Hi Kashi! Welcome, welcome!!

      It’s like some instinctive thing for me to write out a list like that when I’m identifying with something. Almost like I’m trying to piece together some coherent story of who it is that I am. A word scrapbook of the pieces that make up a bigger me. : )

      I try to relate how that instinct would help me in a survival situation. But I’ve got nothing. I would starve to death and get eaten by bears and wolves while I tried to make lists and understand my identity by talking to the trees and the wind looking for answers. Probably a good thing I’m an indoor cat until I figure it all out. : D

      Thank you for stopping by! {giving you your space air hug} And one day, if/when you’re feeling especially adventuresome, you could share some more about you. : ) Until then, take good care of yourself.

      Like

  3. hi. i ended up here after starting on Penelope Trunks blog and then hopping over to the page you discuss in this blog, and then finding this link. i agree 100%. i went down that list with my jaw on my feet. i’ve wondered for a long time if I might have AS (in addition to PTSD) and like yourself, have been really hard on myself (along with other people) because i felt so deficient… so many times i’ve been told i “wasn’t trying” at a job when i was killing myself… acknowledged for being smart/genius and then punished (by family, peers, teachers, employers, therapists) for not living up to expectations all my life… not knowing how or why i was different/”bad”, hating myself for it… and it’s sooooo sad and painful to accept that i actually am different and that’s not going to ever change no matter how many skills i build, not to mention all the years i’ve spend actively participating in my own abuse and i’ve lost to futile effort (decades), but at the same time such a relief. such a relief. i can let go of the expectations and build new ones. maybe i can even learn to love myself and stop letting myself be targetted by bullies and the ignorant. The losses associated with PTSD were bad… merely acknowledging that my deficits were that severe was so painful. Aspergers explains to some extent how i acquired PTSD to begin with… and why mine is so intractable. No, i’m not doing it on purpose, no, i’m not faking it, no, i’m not a drama queen, no, i don’t WANT attention — if anything 100% the opposite. As a result i have completely withdrawn from society. I have to find some way to make this information meaningful to me, and if possible, to others. the comfort in knowing i am not alone is incredible. i love my brain and the inside of my head, but i would trade it all to connect, i love to be alone but i am lonely, maybe now i can find some way to both be myself and not always be alone. Social contact has just proven (after four+ decades) devastatingly painful and confusing — but partly because i’ve allowed myself to be defined by the ignorance of others.

    Like

    • Jennifer Roark says:

      Hello!! uhh…Myself? = )

      I can relate to nearly every single thing you said. And that *not* wanting attention? I.hear.ya. I have mastered the art of being invisible while in plain sight. ( O.O Does that make me ninja!? That would be so cool.)

      Here’s how I see it though. You *aren’t* normal, and you’re never going to be. Because you weren’t *meant* to be. I just saw something a friend of mine posted on facebook that I thought of while reading your comment… just a sec I’ll go find it and post it here for you. . .

      Create a New One

      Look at the current state of the world. If you ask me, it’s a little bit fucked up. So the last thing the world needs… is more of *that*. Like Einstein said, “We can’t solve problems by using the same kind of thinking we used when we created them.”

      Well guess what. . . we’re examples of that new way of thinking and being. It’s uncomfortable. It’s awkward. It’s embarrassing to be that first person to be dancing a new dance and singing a new kind of song. But that’s *exactly* what is needed most right now. And after 4+ decades of living a life of being different and not fitting in. . . I’d say you got the training you needed to find the bravery and courage within yourself to be the first one to start modeling a new way of being.

      Uncover that person in you, and be that person unapologetically. Because *that* is what the world needs most from you right now. As do you.

      The things you do, and the things you like, and the ways you have to do them. . . may make absolutely no sense to you or anyone else. . . but do it anyways. If you feel like you only want to eat all white food. Well, who the hell is it going to kill for you to eat all white food? Nobody! (Well maybe some potatoes. God rest their souls.)

      Part of being a leader (and I believe that’s exactly what we represent. . . the forerunners of a new way) . . . sometimes means being the only one doing it, and even feeling lonely for awhile. But if you’re just being who you naturally are inside. . . you’ll start to shine. . . and you’ll grow stronger. . . and you won’t be lonely for long.

      Live life *your* way. (Pssst. . . think of it as writing new rules for how to live life. . . and you’re co-authoring. . . so make it fun! . . . oh wait. . . that’s one of my new rules… but feel free to use too!)

      {Edit to add: And what’s wrong with being a Drama Queen?! I’ve squeezed myself so tight to be quiet and so well behaved to fit in and not “make a scene” that I nearly choked the life out of myself. I feel big. . . so prepare for me to act big. In my own way. (typically in private… but man is it a sight to behold! : D ) Jay even started a club for me called Drama Queen Anonymous or DQA for short. Consider this your invite ; ) }

      Like

      • Ophelia (Myself) says:

        thanks very much for responding. i relate to choking the life out of yourself trying to fit in. i’d be honored to join DQA!

        i don’t even know what i’m feeling right now. it hurts and feels good at the same time. i’m a little overwhelmed. well, a lot. i really didn’t want this card, but i’ll take what i’m dealt; i’d rather be this way than be a sheep.

        i appreciate very much your words of encouragement and your work on this blog.

        Like

  4. Hello there I am so glad I found your website, I really found you by mistake, while I was researching on Digg for something else, Anyhow I am here now and would just like to say thanks for a fantastic post and a all round entertaining blog (I also love the theme/design), I don’t have time to go through it all at the moment but I have book-marked it and also added in your RSS feeds, so when I have time I will be back to read a great deal more, Please do keep up the superb job.

    Like

    • Hi Oscar,

      Thanks so much, and I’m super glad to hear that you’ve enjoyed it so much. I know I get tickled pink when I find a site that does that for me, so I can appreciate where you’re coming from. : D

      Like

  5. I was reading along until you wrote “This is more specifically for women who have it, so guys. . . it may not speak to you.” Well it sure applies to me! I’m not diagnosed because I don’t need one. So many symptoms line up.

    I found your site after typing “goddamn aspergers” into a search engine. I’m trying to learn the guitar and my attention span makes it difficult. After 40 years of everyone telling me I’m fucked up I’ve finally realized that everyone else is too. They just hide it better. How I used to long to be able to hide my feelings and be a hypocrite too. I even tried for many years to be part of a conservative church so the “structured environment” would magically change me into “good” person. That almost killed me, literally. Structure can go fuck itself.

    You didn’t talk about meltdowns. This is what I struggle with constantly. Sometimes I wonder if I will drive my wife and son away from me eventually. The constant rage over a world that I cannot fit into makes me want to die sometimes. But I don’t want to die. I want to make a meaningful difference in this world for good.

    Thank you for writing this.

    Like

    • Meltdowns. When reading that paragraph of your comment, I had a *flash* feel/visual. In my mind’s eye and as an observer, I saw the entire life of a man play out within a few seconds. The common thread throughout the life that was emphasized for me, was all of the situations in which the man had a meltdown.

      I felt the pain, anger, frustration felt by the man every time it happened. Him seeing and feeling how it affected those around him, and then beating himself up inside for not trying harder . . . for not being able to be a better person.

      I simultaneously felt from myself, a deep sorrow from watching how much the man tried and how much he suffered. I felt a deep ache in my heart, wishing the man would give himself a break. Wishing he could find peace with himself.

      Then I snapped back to my current time, and I saw all of the times I had had a meltdown. All of the times that I screamed at myself at the top of my lungs internally, asking what the fuck was wrong with me and why couldn’t I get it? Why couldn’t I just drop dead so the pain I felt would stop. And what was the point of me being here if it was just going to be too painful to make any difference?

      But because I had just watched the man’s struggle from the outside, I was able to turn and watch myself from the outside and feel the same for myself that I felt for the man.

      Like

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