Ranting

I need to rant a little bit.

I need to say that I don’t consider it a compliment to be told that I don’t seem as if I have Asperger’s Syndrome. I don’t consider it flattery to be told that you notice nothing different about me and that I seem completely “normal.”

I don’t know what normal is. Would I be normal if I did not have AS? I don’t know, but I do know that I can’t separate myself from AS. I don’t know what I’d be like without it. It’s part of me. It affects everything in my life.

I don’t know how to explain this, but I don’t care if you don’t notice my Aspie-ness or think I’m just like you. Except when you tell me that I seem to be normal or unaffected by AS – because then it makes me feel invalidated.

You can’t see it, but my brain works in a way that is consistent with a diagnosis of Asperger’s – and in a way that is also different from the majority of the population. Different isn’t bad, but different is still different. My brain works differently. I experience things differently. I sense things differently. I think differently. I analyze differently. I communicate with myself and with others differently. I process differently. You can’t see it because it’s invisible and because I’m trained to hide my differences. You don’t see it because, around you, I’m always “on,” always putting on a performance.

And no, I can’t just turn “off” and act “natural” so you can see all my differences on the surface. There’s way too much anxiety in play and too much of a habit of hiding to just turn off my act around people with whom I don’t feel completely comfortable. It’s almost like all of existence is an act, for me. Every time we cross paths, every attempt at eye contact or communication.

I guess the thing is that when you say I seem normal, I feel completely isolated and misunderstood. I feel like you are happy to just take what you see on the surface and not question what might be beneath. It’s kind of unfair of me, I guess. I shouldn’t, and to some degree I don’t, expect people to dig and struggle to get to know the real me. But at least, if you’re not going to dig, at least acknowledge that you are barely scratching the surface. At least acknowledge that when you say I seem normal, you still know there could be a lot going on under the surface.

I guess that’s all for now. Smile with tongue out

Passing Too Well

I seem normal.

Obviously, I seem normal. I passed as normal for years and years. If I didn’t seem normal, Asperger’s Syndrome would have been easily diagnosed when I was much younger. “Passing” for normal is actually a commonly-used term in the AS community. Mostly, we try to pass as normal. In fact, it’s pretty much the ultimate goal. I think that’s how people separate high-functioning autism from low-functioning. Can we pass as normal? Can we hide our differences well enough?

How do people expect me to be? I mean, doesn’t everyone try to hide their differences? I also have depression, but you wouldn’t know it—or expect to know it—from one meeting with me. Even if I was really depressed when you met me, I’d hide it, right? And you wouldn’t know what was going on in my head. Just like I wouldn’t know you have ADD or severe insomnia… or even necessarily that you’re shy.

Everyone hides their differences. Yes, I’m making a blanket statement. Maybe we shouldn’t, but we do. We do our best to blend in. I do my best to blend in because I don’t like to draw attention to myself, and, well, it’s also habit. I do it because I don’t want to appear rude, because I don’t want to make you uncomfortable…

I could just let my differences shine through. I could just not look you in the eye at all – really, that’s what I’d prefer. I can’t say it causes me physical pain to do it, but in a way it does hurt. I could just rock and look around while you’re talking to me, maybe shake/flap my hand a bit…

I guess my point with all this is that I’m a little frustrated. I don’t mind people considering me normal. I mean… I’m normal, just not neuro-typical. I’m okay with them not being able to see that I have difficulties. And, in fact, I knew I was opening myself up to these kinds of responses by sort of publically broadcasting that I’m an Aspie. I even knew that other Aspies hate telling people for this exact reason. I’m not mad at people for this. But it does get a little frustrating to hear this thing that can sound a lot like disbelief when they point out to me that I don’t seem to be socially awkward or different.

I will smile and shrug it off and ignore my urge to give a two-hour lecture on what AS is. But maybe some of you can take something away from my rant? Maybe a little more understanding for people who have a so-called “invisible disability,” and for how they may feel when you let your first thought roll off your tongue.

“You seem normal to me.”

“I never would have guessed! You seem so normal!”

Try something else, maybe? Hey, you could even post a comment with alternative reactions/things to say!

Bad Aspie Day

This is not an original topic. I’ve read several blog posts about the Bad Asperger’s Day and found many more that I haven’t read yet. I’m going to write it, anyway. If you’re interested in other perspectives, take a look at AspergerCafe and AspieWizard, or just do a search!

So, You’re Having a Bad Day?

It’s more than just having a bad day. To say you’re “having a bad day” is usually synonymous with saying that things are going badly. Circumstances are frustrating, people are annoying, you’re dropping or breaking or ruining things. I have days like that, and those are, indeed, bad days. To have a Bad Aspie Day, however, is a little different. Sometimes, there are similar “bad day” things going on, sometimes not. Today, for instance, all it took was waking up.

It was like. There’s fuzz or static or something in my head, and it makes things feel muddled. But rather than dulling my senses, it somehow still allows me to hear in great detail every little noise. Remember how I said I deal with noises that bother me? Today, every little sound drives me up the wall, and I keep wanting to tilt my head and protect my ear with my shoulder. The fan is rattling like it always does, my family members’ voices haven’t changed, and really nothing unusual is going on, but they make me tense and irritable.

It kind of just feels like verging on some kind of outburst or even a meltdown all day.

Aren’t Things Always As Overwhelming?

I grew up to adulthood not even knowing about Asperger’s, so obviously I’ve learned coping mechanisms, and I put them into practice very often with success! If I hadn’t learned to cope with the everyday stressors that I experience, I can guarantee I wouldn’t have been able to hold a job or keep a friend. So what’s so different on a Bad Aspie Day – why not use the same coping skills?

What can I say? It’s like they just don’t work. It takes everything I have on a day like today to keep from just being flat out rude. I hold in so much and just want to scream, and then I try to gently (and yet, can I even tell if I sound gentle?) ask people to SHUT UP!!!!!!! if they could please keep what they want to tell me quite brief. I try to let off some of the extra tension by indulging in some stims, but what I really want to do is curl up in bed with a comfy pillow, a soft blanket, my kitty, and some white noise like ocean waves.

What’s the Fix?

I don’t know how to fix it, really. As TheAspieWizard says, distractions can help. I do the same thing with my cat when he’s cranky – distract him with something fun or tasty, and sometimes he’ll forget that he wants to bite you, but then again, sometimes he finishes with his distraction and remembers perfectly how hard he wants to sink his teeth into my flesh. So, obviously, it’s not a perfect fix. I’m not sure there is a real solution, and that’s kind of the point. It’s a Bad Aspie Day, and that means that some days I just need to withdraw and indulge in things that are soothing, if not for my own sake, then definitely for the sake of my loved ones!

Scripted Interaction

I’ve come to realize something about the way I interact with people: I use a lot of scripts. This is a common Aspie thing, but it’s not something I related to immediately. When I first read about the idea of using “scripts” when interacting with people, I dismissed it as something I don’t do. But, the more I’ve thought about it, the more I’ve realized I do this.

Actually, my initial dismissal of it relates to another aspie trait: taking things very literally. I didn’t realize that interacting with scripts did not necessarily mean saying the exact same words every time I end up in a certain situation. I didn’t realize that getting your script from what you hear from other people or on TV could mean anything other than repeating them word-for-word every time! Oops!

aspie script

How Much is Scripted

Now, I don’t do it (use scripts) all the time. With close friends and family I guess I am less self-conscious and therefore more able to tune into what they’re saying and go with the flow of conversation. Also, I’m more comfortable in those situations with possibly stumbling over my own words or feeling a fool for other reasons.

But with strangers, it’s a different story. Then, it is much more common that I follow a script. It helps me deal with anxiety. It helps me deal with how overwhelming it is to look someone in the eye and try to judge their thoughts or emotions.

I just put on my smile (I learned how to put on a smile when I had braces – prior to this even smiling on demand was difficult) and use my script. Time to interact with a cashier? Ok. If they say this, I’ll say that. If I have a concern, I’ll use these words. Time to respond to someone’s small talk in church? Here’s how I’ll answer, and I know to smile or laugh if these things happen in the conversation. I listen to their words to make sure I’m being understood and to get the information I need and to respond as necessary, but that’s all.

Scripts have also really helped me with phone calls. Phone calls used to stress me out to the extreme. With experience, though, I’ve learned more and more how different types of phone calls “go.” I’ve learned the chipper way I need to speak, the respectful words to use. I can get through all kinds of phone calls now with almost no stress, and I can apply some scripts to new situations. If I had never called to ask about open job positions before, I might use the script for calling Walmart to ask if they carry a certain product. That’s not a perfect example, but you see what I mean.

It has also helped with ordering food in restaurants and quite a few other things.

The Whys and Why Nots

It’s shyness and anxiety, yes. But my coping mechanism is very Aspergian – using scripts. My phonecalls all sound very similar. My interactions with medical professionals all sounds very similar. The smile I use to order food is the same smile I use to tell a nurse, randomly, that I love the color of her scrubs. By saying things that are tried and true and bound to work sufficiently in these situations, I don’t have to think and get anxious.

The flip side is that if I’m in the grocery store focused on shopping, focused on the quick scripted interactions I might need to tell someone whether or not I know where the green beans are located or tell the cashier whether or not it’s hot outside, I become sometimes totally unprepared for something else. A sudden phone call from an acquaintance might suddenly come in, and I’ll have to totally ignore it because I can’t handle switching – or don’t know how to switch – gears. If I do answer, I’ll sound flustered and anxious, usually.

And Heaven forbid I run into someone I know while shopping. It’s like my greatest fear while shopping to run into someone I actually know. If possible – if he or she doesn’t see me – I will avoid the person, and I might or might not mention later that I saw them at Walmart on Thursday. If they’ve seen me, I must interact. My heart will be pounding for several minutes afterward, and it will get me all confused about how to complete my shopping trip.

The flip side just goes to show how important my scripts are to my functioning and how heavily I rely on them. Some of my friends have seen it in me already. (“You were at the PX? Why didn’t you say hi?”) Some have just been confused. (“You talked to me for 2 seconds at the store and then said, ‘Bye.’ It was kind of awkward, but you’re proud of yourself for it?”) Some have been annoyed. (“You never answer your phone!”)

I hope this helps you to understand me a little better. Actually, just writing this out help ME understand me a little better. And, if someone else in your life is an Aspie, keep in mind what might be going through his/her mind, too.

 

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Asperger’s and the Senses

Asperger’s Syndrome (AS) is a neurological difference (I really don’t want to say “neurological disorder,” though that is what you will find in many sources.) It means that, as an Aspie, my mind is differently wired than the mind of someone who is neuro-typical (someone not on the spectrum).

I don’t know why my brain is wired differently or what causes it; I just know that it is. It is my different wiring, however, that makes me not only behave but also perceive differently than the average person. Therefore, one of the ways Asperger’s affects me is in my ability to “integrate” my senses.

Sensory issues are kind of a big deal. They can cause a lot of stress. Also, they can make me really misunderstood. If I seem to be overreacting to a situation and you don’t understand why, chances are good that I’m having difficulty with sensory integration.

Sensory Integration

Many people with an ASD (Autism Spectrum Disorder) including people with AS – like me – experience the world very differently because we are either over- or under-sensitive to certain stimuli.

The American Mental Health Alliance says:

“According to Jane Ayres, Ph.D. (2000) sensory integration is defined as ‘the organization of sensory input for use.’ She clarifies by saying, ‘The many parts of the nervous system work together so that a person can interact with the environment effectively and experience appropriate satisfaction.’ From this perceptive, Asperger’s is seen as a neurological disorder which can include dysfunction in the ability to be sensitive to and properly utilize the senses of hearing, gravity and movement (i.e., vestibular), muscles and joints (proprioceptive), touch, and vision.”

Basically, we have to take in information with our senses in order to interact with people and the world around us, but with an ASD it seems there’s a lack of a filter. Everything comes in equally vital, equally loud, equally bright, etc.

Lynne Soraya wrote on her blog on Psychology Today:

“Smells or sounds that may not bother another, may be incredibly intrusive to us. We might not be able bear certain textures. The brain and nervous system my overload when any one sense, or combination of senses, is overwhelmed. A loud stadium, or big crowd may cause us intense stress and perhaps an angry outburst. Even certain types of lighting might cause distress.”

Sensory Overload

As said above, any one sense or a combination of multiple senses can cause someone with sensory integration issues to become overwhelmed or overloaded. When this happens, things can get pretty tense. Sensitivity, it seems to me, may even go up more once I become overwhelmed. Some people may become very angry, clumsy, or distracted. They may either have an outburst or withdraw.

For me, I seem to just be unable to calm down. I will usually cry and often will yell at whoever happens to be nearby, especially if they’re contributing to my overstimulation. I may have a meltdown. I might just flinch away from a touch or start to engage in stimming behaviors (more about this later). If a sound is bothering me, I will usually turn my head to the side and lean it toward my shoulder, or, if it’s very intense, I will close one or both of my ears. Also, I will have difficulty engaging in conversation while I’m overwhelmed like this because I can’t focus on anything else. This is why large crowd situations can be very hard for me and is probably one reason why the job I held the longest happened to be in a small, quiet office situation.

My Sensory Sensitivities

There are plenty of websites which will give you more comprehensive lists of possible sensory problems, but I want to go ahead and just list some of the ones that bother me, specifically.

Hearing

  • When younger, I was very sensitive to any loud noises. Movie theaters, churches, and concerts were all big problems for me and made me very uncomfortable. This has lessened as I’ve aged and have gotten more accustomed to high volumes, but it still bothers me at times. After being in a loud situation for some time I will often need some time in silence to recover. To cope I cover or plug my ears or try to turn one ear away from the noise. I don’t know why, but I go back and forth on loudness. Sometimes I can tolerate loudness – even enjoy it! Other times I have to turn things way down low because my ears are hurting.
  • I’m bothered by discordant sounds as well as the sound of certain types of sirens or alarms. Piercing sounds also bother me. The air raid siren? Absolutely can’t stand it. Why do movies always have to use that sound effect?? Music with screaming falls under the category of sounds that bother me, and listening to it makes me feel angry!
  • In group situations, I can’t tune out background noise. I will have difficulty discerning any words because everything jumbles up into noise. If things are too noisy, I will discontinue a conversation because even when I’m watching your mouth I can’t figure out what’s being said to me. I’ve learned to cope in noisy situations by sitting and watching and not trying to engage or understand any particular conversation. Doing more than this will just stress me out.
  • I also have trouble processing words sometimes when I can’t see the mouth of the speaker. There are times when I just hear a bunch of sounds/syllables jumbled together and can’t break them apart into words that make sense. This most often manifests as difficulty understanding song lyrics, but it also leads to me having to ask people to repeat themselves frequently. I think I’ve gotten better with this over time.

Sight

  • Unlike many Aspies, I actually like bright lighting. Dim lighting can be hard on my eyes. My eyes also take a long time to adjust to darkness, but they adjust very quickly to brightness.
  • I catch small movements that other people seem not to see. I feel like I’m frequently the first and/or only person to see a bug in a room or something similar.
  • I do not blink frequently.

Touch

  • I can’t wear crew-neck shirts or anything that’s too tight around my neck. I only recently was able to wear a turtleneck and a scarf, but I can only tolerate the sensation if I’m not too stressed. One thing that I’ve gotten better about is tags in my clothing. As a kid I couldn’t stand stags in my shirts! Sometimes, any type of clothing can drive me nuts, or even the feel of my hair on my neck. After a stressful day I will usually be extremely eager to get home, put my hair up, and put on some comfy clothes (like a really loose, baggy, soft, thin t-shirt). Or just strip.
  • Light touch bothers me. I don’t know how to describe this to someone who doesn’t have this sensitivity. If you have it, you know what I mean. It’s like it makes my skin crawl. This has gotten better over time, though.
  • Shoes bother me. They bother me if they’re too loose or if they’re too tight. If you know me, you’ve probably seen me wearing sneakers with the laces loose and untied.
  • In general, I like to be touched/hugged, but I’m also hyper-aware of being touched. There’s no such thing as a casual touch, for me. I don’t touch people when I speak because of this hyper-awareness. It’s not natural. If I’ve ever touched you on the back or arm (not in a hug) or on the head, feel complimented because it probably took a lot of effort. If I’m brushed against in even the slightest way, I’m extremely aware of it. When I was younger it made me feel uncomfortable because I didn’t know how to process the unfamiliar sensations. I guess you could say I want to like it. Hugs I do like, though. Ignore the uncomfortable look on my face. (lol)
  • I love back rubs and back scratches and being petted (like on my hair).
  • Some showers have a certain spray that hurts me and causes a weird sensation in my neck/throat, similar to gagging (but not gagging).

Vestibular and Proprioceptive

  • I have poor spacial awareness, so I frequently bump into things when I walk or stub my toes. I almost always have a bruise or three from whacking my arm on a doorjamb or something like that.
  • I also have pretty poor coordination. Just toss something to me and watch me flinch. Actually, no, please don’t.
  • I do get motion-sickness sometimes, but not all the time. I guess at some times I am more sensitive to this.
  • I like to swing and rock, and when I was younger I would walk circles, for instance, around my friends if they were standing still (this also saved me from having to talk as much). I used to love to spin, but it now makes me feel sick at times. My need to rock and/or swing is related to a hypo-sensitivity to vestibular input, from what I’ve read.
  • Also, toe-walking.

Wallflowering

(Friday) Today I’m doing something that I do well. That is, sitting quietly in a corner and entertaining myself while the world goes on around me. You might think of it as people-watching, and it wouldn’t sound too strange. I mean, that’s something people do. But the thing is that I’m not really people-watching I think it might be more accurately described as “wall-flowering.” By that I mean I just kind of blend in to the scenery. I turn on my invisibility ability (my husband is pretty convinced I can turn invisible Smile with tongue out). I kind of retreat into my head and watch the world while really distancing myself from actually being engaged in it. I watch, but I don’t think too deeply, either, as others might. Marty would analyze everyone and wonder what they were thinking, but not me. I’m more in my own head. I would be extremely startled and uncomfortable if someone were to try and approach me or interact with me. I guess it’s no wonder people think I’m un-approachable. I never saw myself as such, because, I mean, I do my best to look up sometimes and look approachable, and if someone does interact with me I try to mask my discomfort and be friendly. But I guess I just never fooled any one as much as I thought I did. I guess I feel like I don’t want to really be approached and it shows.

Altzo, I’ve done this for as long as I can remember. When I was younger, I had to be baby-sat a lot because I was raised by a single mother who had to work full-time. I remember multiple times my babysitters would worry about me because I was too quiet or they thought I was bored. I would get slightly distressed if they kept approaching me to ask if I would like something to eat or drink or if I would like to do some certain activity. I was perfectly content to sit behind the couch and write in my notebook or just get lost in my thoughts. I didn’t usually need them to entertain me.

I also remember during seventh grade when I was homeschooling I would spend my days at my grandparents’ house. It was often overwhelming because they liked to talk and liked to be acknowledged when they spoke and wanted to engage me in conversations and get my opinion on their music and ask questions… I started sitting behind the futon and trying to disengage from the world, but I found out years later that it really hurt my Gramma’s feelings and she thought she had done something wrong!

And still, I tend to do this when I’m with a large group of friends. I can get anxious in large groups, but I feel better if I’m able to sort of disengage, find a safe place to sit and watch and think. I get stressed out again, however, if people approach me and try to engage me or ask if something’s wrong.

Still, I’d like to add that I don’t want to be un-approachable. I don’t want to feel stressed out when people try to engage me. In fact, many times I like it in spite of my anxiety. I like to feel wanted, cared-about. I like to feel that people like me and find me interesting. And, let’s face it, I would have very few friends if it weren’t for people coming into my bubble and interacting with me. Some of my best friends were those who saw me as shy but as someone they wanted to engage regardless. And I’m extremely glad they did!

Aspie Alert

I am excited to be able to share some big news! I am Aspergian – AKA an Aspie, or Aspergirl! That is to say I’ve been diagnosed with Asperger’s Syndrome (AS)!

Why am I excited about this?

(I did not make this rage comic, but I had to share it!)

Aspies for Dummies

Writing as an Aspie

I feel like I can finally write about Asperger’s as someone with Asperger’s. Before I received the diagnosis, I had strong suspicions about having AS, but I didn’t know whether I had it or had something related or had nothing other than a few traits that were similar to AS! I actually wondered if I was just being a bit of a hypochondriac or making things up. Because of this, I didn’t want to write about it publically for fear of misrepresenting it or something. Also, the more I studied it over the last several months, the more I became aware of the fact that many people in the Aspie community have very strong and negative feelings towards people who self-diagnose, and I very much want to avoid bringing that wrath upon myself (I’ve seen other people become the objects of that anger, and that was enough for me).

Now, however, that I have seen a professional who specializes in the sort of diagnostic testing I needed and have gotten a formal diagnosis, I no longer have to question myself, and no one should have to wonder whether or not I truly have Asperger’s. I do. Case closed.

I’m excited, though, because I’ve been dying to write about Asperger’s for many months, now, and I have felt like I needed to wait. It has made it hard to blog at all because I sit down wanting to write but can’t get my mind off this subject. Anyone who reads my blog probably noticed the fact that I have hardly written at all lately, and this is partially why I’ve been so scarce. Partially. What I’ve said before about life being overwhelming and such was all true, as well, but this is the other half of the reason, you might say.

This Explains So Much!

The other reason I’m so excited is that this diagnosis explains so much about me, my life, my experiences, my relationships… It is such a relief to finally have some knowledge as to why things happened the way they did. I’ll give you one big example for now: school. I now understand so much more why I ended up dropping out of school. I’m not saying, “It’s all Asperger’s fault; I couldn’t help what happened!”

What happened, happened. I did the best I knew how to do, and my family did the best they knew how to do. What ended up happening was that, after years and years of hating school but getting good grades and knowing I was smart but having meltdowns just thinking about my schoolwork, I finally couldn’t make myself go any more, and I gave up and left school. I got my GED at 17. And I got huge amounts of grief from my family and friends about having done that. For so many years, all I’ve known is that I had/have depression. This is true. Even my current doctors agree that I have recurrent major depression. But it explained so little. I felt miserable, yes, but there was more to it than being depressed. What I was feeling those evenings before school, those mornings before school, went beyond the misery of depression. I started to wonder last year whether those times of bawling and having trouble breathing and feeling out of control and being only able to think “I can’t” over and over again – I started to wonder if those times were actually panic attacks. But having read about panic attacks, I realized that couldn’t be the explanation. So what were they? They were meltdowns. I had them then (as a teenager), and I’ve had them as an adult as well.

I don’t know if one has to be Aspergian to have a meltdown (I would think that’s not the case, actually), but I do know that they are something Aspies struggle with a lot. They are a big part of life. I think it probably has to do with our propensity to become emotionally or mentally overwhelmed or overstimulated by one (or more) of our senses. I may have to write more about meltdowns at a later date, but the point is I finally know what was going on with me at those times. I finally know I’m not just crazy. I’m not just the one person with depression who can’t seem to handle it and do things anyway. I understand why I couldn’t, at the time, make myself “just do it.”

Just knowing is a relief. It’s kind of a boost to my self-confidence, too. Actually, I’m quite proud of how well I did do in school, given my undiagnosed neurological difference. Seriously.

Asperger’s also explains some positive things. For instance, my logical mind probably comes from having Asperger’s, and it explains why I can spend hours upon hours gleefully researching something that interests me.

It just explains so much. So many parts of my life. It’s like it puts all kinds of seemingly unrelated puzzle pieces together, and my life experience finally makes sense. That’s why I’m excited!

Now What?

Expect to hear more from me about Asperger’s, now that I finally feel free to write about it. Maybe once I get some of it out of my system I’ll be able to get back to blogging about other things, too. Smile If you’re interested in some more reading, I would recommend the Wikipedia Article and this blog post on The Asperger Café. I’m really hoping maybe the people close to me will take a bit of an interest in this thing that is, as it turns out, a big part of my brain and my life. So yeah! That’s it for now!