Honestly, Asperger’s

When people really love you, they wont talk about you behind your back. They wont belittle you when you aren’t around. They wont ignore you. When people really love you, they wont blame you for their own bad day. They wont make you feel like a child being reprimanded. When people really love you, they make the effort for you, to be there when you need them, even when you don’t ask because you don’t know how to ask for help. They will do there best to understand the “why” behind your actions and help you to work through a tough spot. They step up and stand in when times are tough. For me, this is black and white, there is no grey area. I’m coming to the conclusion that this is not the case for all people.

 

Sometimes, I don’t know what to do with myself. I’m not a good person all the time. I don’t know how to behave socially and some situations are emotionally exhausting to get through. I simply can’t socialize for long periods of time on little sleep or when times are hard and stress is high without having some major slip ups, the holidays typically make this worse. I interrupt or say inappropriate things because my brain simply cannot process as fast as you can. I may be taking a break to regain my thoughts and by the time I’m ready to finish what I was saying, you’ve moved on to something else. It’s much harder to control my thoughts and keep them to myself when I’m under pressure and am stressed out. I don’t know how to communicate in a normal social situation effectively and am often misunderstood and put people on the defensive without meaning to. My brain often obsesses about situations and encounters until I have convinced myself that nobody likes me or that certain people in particular are mad at me.

 

I feel stupid in most social situations and often play through events over and over and over again trying to figure out what I did right and what I did wrong. Everything is black and white. I see things very linearly. I don’t trust people who have ever violated my trust in the past, even over something small. You have proven yourself untrustworthy in my mind and I am working on learning how to rebuild that trust. I carry past hurts and burdens because I don’t know how to tell people that they have hurt me. I don’t know how to discuss these events where my trust has been betrayed and my feelings hurt without becoming angry. I feel this is because of the way I process information. When I am initially slighted, I feel angry and betrayed, but I’m told holding on to those feelings isn’t good. Unfortunately, it was never explained to me how to properly deal with them, so I ignore it and things continue on as they were before for days, weeks, months and even years without the other person ever knowing they have hurt me. I do this to keep the peace. A “lady” doesn’t start arguments and it’s her “job” to keep the family civil and together. Unfortunately, I always slip up somewhere. I can’t keep up social pretenses for long periods of time without getting exhausted and drained. Many people over the years have hurt me in one way or the other and then they question my ability to go to them for support. They see their actions in my life as supportive, I don’t and mostly because of these past hurts.

 

I have Asperger’s Syndrome. I’m not crazy, I don’t have Bipolar Disorder and I’m not psychotic. WE (Hubby and I) have decided that I don’t need a piece of paper telling me who I am or how I function. I know when I’ve hit my limits and if you don’t care to learn my limits, I’m sorry that I ruined your day. I communicate much more effectively in writing and am very awkward when talking to people face to face or on the phone. The phone is particularly difficult because I can hear your tone of voice but without the facial cues to go with in, I’m lost. I don’t know when you are done talking or when you are taking a breath. I can’t tell if what you are saying is meant in jest, in love, or in rebuke. And please remember that the last time I participated in phone calls on a regular basis was in 2005, and mostly I was talking to Hubby.

 

I have sensory issues involving temperature and smell, mostly, but textures of certain foods and the lighting at certain times of day is bothersome too. I enjoy being outside in the sunshine, but that much light often hurts my eyes physically. Loud noises seem louder to me and often startle me. I scare easily and I think in videos and pictures. I often obsess about the things that nobody else cares about or even remembers. (Like that meme thingy about the penguins knees from yesterday… I’m still wondering if penguins have knees.) My life is not easy. But nobody’s life is easy. I have my schedule and my calendars and my charts to keep me focused and moving each day. I have a chore chart so that I don’t forget to do the laundry or load the dishwasher. In a lot of ways, I’m still very childlike.

 

I need some extra patience and assistance the first time experiencing something. I have no basis for comparison other that what I can see, hear, touch, taste and smell for myself. When I have never gone through something before, the stress is compounded so much more. I don’t know what to expect, I don’t know how to behave, I don’t have any previous knowledge to fall back on. I love my books but even they can’t prepare you for everything. It’s incredibly hard not knowing what is expected of you, or even knowing what IS expected and not being able to live up to those expectations. It’s hard when the one person who helps explain all of this and guides me through is halfway around the world.

 

I’m lost. I’m thrown into situations every day that I don’t know how to handle and I don’t have someone to hold my hand. I need someone to hold my hand. I need someone to be the “Leonard to my Sheldon”, so to speak.Hubby sometimes calls me “Sheldon” and I’ve always looked on it as a term of endearment because he truly does understand me and he works very hard to help me understand others and why something I have said or done could be considered rude or “bratty”.

 

I need to be more transparent. I need you to be more transparent, too. Please don’t ask general questions like “How are you doing?”. You will most likely get an answer that makes me sound like a bitch because I don’t understand that question. How am I doing what? Are we painting when you ask and you are referencing my technique? Are you questioning my use of a flathead screwdriver instead of a phillips? Is my driving that bad? Are you asking about the kids in school? Or behavior problems at home? Are you asking if I’ve burned dinner recently or whether I can keep the house running while Hubby is gone? “How are you doing?” is such a stupid question to me because there are so many ways to answer it and most of them wont even touch your intent behind the question. The numerous amounts of ways this could be answered leads me into a deep confusion and I often feel stupid and incoherent in my response. This is particularly true when you ask via email, text message, FB message or other written forms of communication.

 

Please help me out by being specific. Ask things like “How are the kids handling the deployment? Are they having any major problems since he’s been gone?” and things like “Have you been able to take some time for yourself? That’s important too.” Being asked a specific question allows me a limited range of answers and I’m more likely to have a tactful response and not be overwhelmed by the question. But be patient. It takes time for my brain to process the question you asked and formulate the answer. If you end up with a curt reply, I most likely felt rushed through my answer and to be completely honest, pushing people away is a default response for me when I’m faced with an overwhelming situation. To avoid answering the question or to avoid making a fool of myself, I will respond as quickly as possible even if that means I come across rude. This is not my intention, but something has made me overwhelmed or uncomfortable and my body is telling me to GET OUT OF HERE!

 

I am working on some of these issues. Hubby began working on some of them with me before me left. I’m doing the best I can right now. Please remember that I’ve had 28 years to learn how to hide my stimming. The way my arm twitches (it jerks really, and can be quite painful if it persists for too long) when I’m stressed out and overly emotional, the way I fidget with my jewelry when I’m nervous. The calm presence I can maintain even while my heart threatens to beat out of my own chest and run off because the anxiety is too much. I talk with my fingers at times because my brain is going too fast and my mouth can’t keep up. If you ever see me talking with one hand in the air as if I’m pushing buttons on the wall, this is my way of trying to slow down my brain so the rest of me can catch up. My brain is always going a mile a minute and I am never able to truly relax. I don’t know what it would be like to feel “stress free”. My brain is always running on about something and I’m still thinking about those penguin knees, even now.

 

I’m trying to grow (not change) who I am so that others will be better able to respond to me and communication can go more effectively. I will have rough spots because tact isn’t something I’m good at. I don’t have a particularly good brain to mouth filter, and Google doesn’t have a “tact translator” (although I think it should).

 

I'm sure this is how my husband feels most of the time. I truly do appreciate his support and help.

I’m sure this is how my husband feels most of the time. I truly do appreciate his support and help.

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21 thoughts on “Honestly, Asperger’s

  1. I was brought here by a friend. I wrote a very similar piece not long ago and everything you say resounds with me, so I’m reblogging.

    • 🙂 Thank you. I really feel that the differences between girls and boys on the spectrum is so vast that they should have separate criteria altogether. Too many women carry the wrong diagnosis and it really does effect how we perceive ourselves and how others perceive us.

  2. Reblogged this on Wine And Roses From Outer Space and commented:
    This very much reminded me of the blog post I wrote some time ago – http://rosewinelover.com/2013/02/02/autism-im-not-crazy-but-sometimes-my-brain-skips-a-beat/
    Definitely worth a read.

  3. ashleekizer says:

    The fact that you can be so open and honest will help others understand, one day acceptance won’t be a dream but a reality, I hope that day is soon for both you and your daughter!!!!

    • The interesting thing is that I find myself more accepted by my friends and complete strangers than I do by some members of my family. Guess that’s the thing about friends. You get to pick them!

  4. This is beautiful and helpful and wonderful. I understand so much more and will use what I learned here when I interact with the special needs children of those I love. (No more non-specific questions!) And Sheldon and Leonard are a perfect example. I love this show and can easily see how hard it would be for Sheldon to navigate the world without Leonard. Thank you for sharing this “inside information.” It will make a difference to many.

  5. willowdot21 says:

    That which you say above is so true. You expect your family to be more attune more accepting and it hit you hard when they are not. so true the saying that you can choose your friends!

    • It’s even harder to deal with my In-Laws. They were there when I received my “Bipolar Disorder with Psychotic Features” diagnosis, so now I’m just the crazy brat, who ruins holidays and needs meds… Or at least that’s how my brain tells me they view me… It’s really hard to change people’s minds when they only see you as crazy. Nothing you can say makes a difference.

      • willowdot21 says:

        Dare I say I understand and empathize. I am always a little out on the edge ..but I have no label. I have a nephew with Asperger’s and I have worked with Autistic children.Please remember we do not all have closed minds…… ad in laws are always a pain!

      • I try to remember these things. For people like me, routines can be set very easily and disrupted just as quickly. For me, the rude and uncompassionate way I am treated because of my behaviors and mannerisms has become common place. It makes it very difficult to open up to people in a social situation because I expect them to be jerks like “the rest”. If that makes sense. I’m still learning not to “throw the baby out with the bathwater” so to speak.

      • willowdot21 says:

        well you are talking to me and that is a start! I am off to bed in a second, 11.55pm here so don’t think I have dumped you if I disappear xx 😉

      • I’m much more articulate in writing and it’s easier for me to communicate this way. Much more easy when I’m writing under a pseudonym. lol

        Night, Dear.

      • willowdot21 says:

        I completely agree it is liberating to be anonymous. Also it is easier to express yourself in writing, no pressure, no one waiting for an answer or staring at you plus the added bonus of being able to correct or re write.
        Perscievere with us boring normals we are not as fortunate as you, we don’t see the world the way you do. I mean that sincerely, you just need to trust us. Those who are not genuine will soon show themselves to be so. Pick your friends and be brave. xx

      • I’m the problem though… Everybody else thinks they put in this huge effort to call and talk to me (which I don’t feel that they do) and now nobody will at all because “I’m pushing them away”… I’m having a rough day.

      • willowdot21 says:

        Hi I am sorry I don’t see you answers when you write them but I don’t want you to think I have ignored you.I am sure that no one really believes that you are pushing them away.Just keep trying !

      • i found an email between my husband and sister-in-law… I’ve pretty much screwed myself with his side of the family at this point… We’re working on it though. It’ll be easier once he gets back from Afghanistan in a few months.

      • willowdot21 says:

        Is he in the forces, it must make things even harder if he away a lot.

      • I manage. He’ll be home soon-ish. It’s harder on the kids though. We have a son who is three and a daughter who’s just now seven.

      • willowdot21 says:

        Well I can see that you are coping amazingly well. How can I know that ? I hear you ask, you probably think I am a stupid woman. But you are running a household, coping with the children and keeping a blog going I think that is pretty cool!

      • I also took up jewelry making as a hobby to keep me busy lol Don’t have a lot of time for it, but I’m getting better. He’ll be home soon and I just have to believe I can hang on til then. After that, I can give in the migraine that’s been pressing in for months and get sick and be done with it lol

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