In Which Our Heroine Updates You With Her Latest Happenings…

It’s been several days since I’ve posted. Partially that’s due to impaired executive function. I can’t seem to get a handle on how to manage my time and tasks effectively. It’s always been an issue for me. Teachers would never understand how I could be so brilliant and yet be unable to remember to retrieve my work from my locker before class, for example. Still like this. Only, adults who can be amazing at a million different things but can’t manage to remember to eat or can’t manage to do simple things like go to the grocery store aren’t quite as acceptable as a lazy, underachieving brilliant student. Obviously I’m a slacker. No. I’m not, I just can’t organize information well and act upon it.

At any rate, I am now in the midst of my assessment for Asperger’s. I’ve had two appointments and completed some formal assessments. My next appointment is less than a week away and at that appointment, I should be finishing up going over my history and hearing my psychologist’s impressions of all the assessments we’ve done. I should get my answer about whether or not I am autistic. I am both excited and nervous about this. Although I have not yet received my formal diagnosis, I feel that there have been several hints that I already have my answer and it is the one I suspected. I am pretty confident that I will be told I am on the spectrum and that I do have Asperger’s. When I told my husband that I felt like I already have my answer and am just awaiting confirmation, I asked if he had any thoughts, questions or comments for me. He replied that nothing will change other than we will have a name for what makes me a little bit different. That’s true. I will be the same person both before and after diagnosis. But, it’s also true that things will change for me in a few significant ways.

First, if I am autistic, it will reframe a number of incidents from my past. There are so many things that have happened in my past that I pull out and reexamine periodically, looking for some new insight into why they happened the way that they did, why I didn’t respond differently, and why I failed at some seemingly simple task. I never get any closer to an answer, but I continually search for one. I’ve told my husband that it’s like an equation for me, except each time I do the math, I arrive at a place where I have to divide by zero. If you have any experience with mathematics, then you know that you cannot divide by zero. It’s undefined. I know this, and yet, each time I get to this undefined place in trying to understand these incidents, I keep trying to divide by zero even though I know it won’t work, and only end up making myself worried and stressed out about something that I’m never going to understand. But, if the reason that these things happened the way that they did, if the reason that I responded the way I did, if the reason I failed is that I am autistic, then I can hopefully let some of this go. It’s not that I want an excuse for these incidents. It’s that I want a reason. A reason is very different from an excuse, at least in my book. A reason means there’s a defined explanation for something. If my brain works a little differently from most people’s brains, then that explains why I struggle with some things that are seemingly easy for others, and it explains why I couldn’t grasp what to do in certain situations in my past. Having an explanation means that I can have closure, and while I may not be able to completely forget about these incidents, I can at least put them to bed having solved the riddle behind them.

Secondly, if I am autistic, then I can learn to be kinder to myself. I struggle so much with negative self talk. In my head there is a constant monologue denigrating me for not being better, more functional, normal, for Christ’s sake. If I am autistic, then the answer there is that I’m never going to be good at being normal. But I can be awesome at being autistic. What I mean is, instead of constantly castigating myself for not being more social, for struggling with executive function, for having a million sensory issues that no one else is bothered by, instead of being embarrassed that something which seemingly every single person on the whole planet takes in stride turns me into a complete wreck… Instead of engaging in negative self talk and forcing myself to do things that make me miserable… Maybe instead, I can cut myself some slack and understand that maybe I will never be the type of person who enjoys social situations, for example, but there’s an explanation for that, and if I know that forcing myself to engage in them anyway is going to make me ill and maybe cause me to have a meltdown, it’s okay to say no and I don’t have to be upset with myself for taking care of me.

Finally, regardless of the diagnosis, a light has been shown on many differences in the way I think and react versus how the majority of people think and react. I can now approach these differences, at least some of them, with some solutions. For example, I have always struggled with executive function, I just didn’t know there was a name for it. Having a name for it and an explanation for why I struggle with these things means that I now understand that I can do things to help improve my executive function. Some things I’ve stumbled onto blindly on my own. For example, I do much better getting things accomplished if I have a list. If I don’t have a list, I flutter about from thing to thing ineffectually. Calendars are incredibly important to me. For the past several years, I’ve used the calendar on my phone and programmed in all of my events and appointments, along with reminders set to go off 2 days before and then 2 hours before I’m supposed to do the thing. If it isn’t in my phone, and more importantly, if I don’t set a reminder for it, it straight up isn’t going to happen. I love the gps feature on my smartphone because I only know ONE way to get anywhere. I learn how to get somewhere one way, and I cannot deviate from that path without an enormous amount of stress. I also have no idea where I am at any given time. We’ve lived in the same time for around 4 years. It’s not a huge place, but I still have no clue where I am unless I drove myself there, nor do I easily relate where I am currently with where another place is. I don’t know my left from my right. Genuinely, I do not. I have to think carefully about it, and I’ve even developed a cheat so that other people don’t know that I’m clueless. I feel the writing callous on the middle finger of my right hand so that I know that is my right hand. It sounds ridiculous. I’m 35. I should know my left from my right, but I don’t. Not really. The gps is an easy way for me to work around my shortcomings without drawing attention to them. I used to carry an atlas in case I needed to navigate somewhere even a little bit unfamiliar. I used it a lot. But a smartphone is a lot less conspicuous and also gives alternatives if my original plan doesn’t work. This is important because trying to come up with a solution after my first plan didn’t work is impossible. My husband has fielded many calls from me asking where something is because I can’t find it. I can’t ask someone else because that involves speaking to a person I don’t know, and other than backtracking to where I started, I can’t navigate a different path. He’s probably had no idea how completely lost I am for all these years, but the secret is out now. Sorry, babe. You married someone who uses you for your impeccable sense of direction. Ha. But, now that I understand that the reason I struggle with time management, organization, and the like is faulty executive function, I am aware that there are apps and tools available which are designed specifically to help me overcome this. I’m very excited to try out some of these to see if they improve things. Even in the (I think unlikely) event that I walk away without a definite diagnosis, I now understand some things about myself better, and understanding them means that I have some ideas for how to help myself overcome them to some degree.

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In Which Our Heroine Is More Than A Little Difficult…

I don’t think I ever understood before just how difficult it must be to live with me. I have always thought of myself as fairly easy going and low maintenance. I don’t like to be around people, so there’s little in the way of demands on my partner to take me places or entertain. I don’t enjoy shopping or fashion, and my tastes are not expensive. I don’t expect extravagant gifts or anything like that. I’m not overly demanding of your time because I enjoy my own company and time to pursue my own interests, so I assume others will require the same. Overall, I felt that I was really easy to get along with. But it turns out that my reasoning is based on the list of things I don’t want.

When you have sensory issues, whether or not you are autistic, the world can be a harsh and difficult place to exist. Even things that most people agree are pleasant can be overwhelming and even painful to experience when you have trouble regulating sensory input. Sensory issues are very common among people on the spectrum, but not all people who experience difficulty with sensory processing experience the same issues or struggle with the same kinds of sensory triggers. For instance, while my list of sensory issues is long and varied, some of the things I can easily rattle off are that I’m extremely sensitive to smells. I can’t handle almost any type of perfume at all, particularly anything that smells like patchouli or sandlewood will give me a crippling migraine almost immediately. I don’t use many commercial cleaners because the scents are too strong for me to handle. I don’t use scented lotions very often or burn scented candles. The exception is that usually, if it smells like food, I am okay. This doesn’t always hold true, but if something genuinely smells like a cookie or cinnamon or something along those lines, I won’t get ill from it. I am also extremely sensitive to sounds. I like things to be at a low or moderate volume if possible and not a lot of extra noise is acceptable. I have difficulties with processing auditory information, so if there are several sources of noise at once, it’s not that I can’t hear, it’s more that I hear everything and can’t listen selectively to only the source I want to hear. It gets overwhelming really quickly. I’m very sensitive to light levels as well. Even on relatively overcast days, I almost can’t bear to leave my house without sunglasses to protect my eyes. They will burn and water until I cry, and if I can’t get out of the light fairly soon, I’ll end up with a headache pretty quickly. The list of things that make existing difficult is actually a lot longer, but this brief glimpse into my list of complaints should give you an idea of how sensory processing can affect me. With all of my various sensitivities, it’s should be fairly easy to imagine how a trip to the store buzzing fluorescent lights, people with a million different scents, unexpected noises over the store speakers, and all the other stimuli can leave me feeling sick and overwhelmed. I often tell my husband that too much stimulation makes me feel like there is a swarm of bees buzzing in my brain. I can’t shut it off and the only way to make it less upsetting is to remove myself from the situation. I feel it’s pretty understandable that largely because of all these issues, I frequently choose to forgo busy public spaces and social commitments.

The thing about all these issues, though, is that they aren’t just mine. I have a wonderful husband who has to live within the confines of all my sensory boundaries. Because I can’t handle strong smells, even if they smell good to him, he can’t choose to wear colognes or even choose his own deodorant and shampoo. I have to smell them first and then tell him if it’s a safe product for me. Lots of times the answer is no. Because I can’t handle a lot of noise, if we’re watching tv, he has to scramble to mute it the instant a commercial comes on whether hes in the middle of something else or not. I can’t even tell you the number of times that he’s given up his own sunglasses because I forgot to grab mine and 5 minutes into a car ride, I’m hiding my face in my shirt to avoid too much light in my eyes. There are times that he wants to attend an event and either chooses not to or chooses to go without me and bears me no ill will, because he knows I simply won’t be able to handle it. Admittedly, those times are few and far between since I had the good sense to choose an introvert for a partner, but they still come up from time to time.

Until I started exploring issues related to my potential ASD diagnosis, I honestly didn’t realize how truly demanding I am. From the reading I’ve done, they say that people with Asperger’s have difficulty with empathy. I’m not yet sure if that’s my diagnosis, but it appears I do struggle with a particular type of empathy, because I had never before considered my partner’s side of any of this. I’m so fortunate to have chosen someone who defaults to caring and considerate in the face of my various demands. The more people I speak to who are on the spectrum or who have sensory issues, the more I realize that this certainly isn’t the experience of everyone else. It makes me feel so grateful to be spending my life with someone who considers all these issues unimportant background noise that one must put up with to be with me, and considers me worthwhile enough to dismiss that noise. It’s doubly appreciated when you consider that my sensory issues make it impossible for me to dismiss any background noise.

In Which Our Heroine Is A Bit Different…

One of the first things I did when I started to suspect that maybe I was on the spectrum was take a quiz that a friend with adult diagnosed ASD recommended. It’s not a professional diagnosis, but it’s a very popular tool among people who are searching for answers about whether they might have Asperger’s. From what I’ve seen, the results tend to correlate pretty well with diagnosis rates of people taking the test.

When I took the test, I expected it to tell me that I was most likely normal, and reassure me that I was being ridiculous with my new suspicions. That was not the result I received. Instead, my results looked like this:

Your neurodiverse (Aspie) score: 158 of 200

Your neurotypical (non-autistic) score: 62 of 200

You are very likely neurodiverse (Aspie)

ASPIE QUIZ

It was at this point that I confided in my husband that I thought I might be on the spectrum. To my utter shock, he wasn’t skeptical or even surprised. Instead, he told me that he’s suspected I might be on the spectrum for awhile now. I was stunned. I now had confirmation from a trusted outside source that this wasn’t just something in my head. Or rather that maybe it *was* all in my head, but I certainly wasn’t imagining the mounting evidence.

It still took me several months before I could decide whether or not to seek an official professional diagnosis. At first, I couldn’t decide if there was anything to be gained from having a diagnosis as an adult. After all, it’s not as if I need special consideration in school anymore. A few things decided me. First, if I am on the spectrum, I want a skilled professional to tell me so and back up my suspicions. My husband and I both felt that there were several people in my life who wouldn’t respect any conversation on the subject unless it was backed by an official diagnosis. Sadly, even with an official diagnosis, I’m confident that many people will be unable to reconcile their preconceived notions of what autism looks like with the person they’ve known for years on end. That’s the trouble in diagnosing females with Asperger’s. They’re so good at camouflaging their differences that people often never even suspect their struggle. The second reason I decided to go ahead with a professional diagnosis is because if ever I decide to return to school or seek further employment, I might benefit from some considerations for my differences. I have trouble processing auditory information, for instance, and with a diagnosis, I would be willing to ask for access to printed copies of any information presented that way so that I can better interpret it. Although I do have other personal reasons for seeking a professional diagnosis, the third and final reason that I considered at the time is that I could really benefit from resources to help me manage my differences a little better. A professional who is skilled at dealing with adults on the spectrum should be able to offer me coping strategies and resources for my issues, and help me understand myself better and how to work around the things that I struggle with to some degree. This information would be invaluable.

I’m actually really looking forward to my assessment. It will be nice to have an answer, one way or the other. My biggest concern at this point is actually getting a no. I greatly respect the professional I’ll be seeing, and I trust her diagnosis, so I will accept her answer regardless, but I identify so strongly at this point, that it will feel like starting back at square one if I’m wrong. But, even a no will be welcome because it gives me a starting place.

On a side note, I recently asked my husband to take the quiz I spoke of above so that I could compare our results. He’s an engineer, very introverted, a very logical thinker, and like me, has special interests that he engages in. I expected that when he took the quiz, his results would look similar to mine. I was wrong. He scored distinctly NT on the quiz. I was both surprised and reassured by his results. It’s still just a quiz, but it tells me that my results weren’t a fluke, and that it’s not just that I’m a bit of an introvert. There’s something different about me, and soon I’ll have an answer as to whether that something is ASD.

In Which Our Heroine Tells You What She Had For Lunch On Tuesday….

As part of the autism diagnostic process, I was asked to write a personal history of my life. A short autobiographical summary of my experiences. There weren’t a lot of guidelines given for this assignment, so I really struggled with what to include. I struggle when telling stories anyway, not because I find writing difficult, but because I don’t know which information to include. When I was in high school, preparing to go to college, I was told by several teachers that when answering an essay question, the best approach is to include all the information that you can think of so that even if you don’t get the question completely correct, there’s enough information to possibly gain you at least partial credit in subjective grading. This approach made so much sense to me because that’s how I tell a story anyway. My mother always said that I couldn’t tell you what happened today without including what I ate for lunch on Tuesday.

I’ve tried, as I’ve gotten older, to truncate my anecdotes and stories when telling them to others, but I still include a lot more information than most people. The people closest to me tend to find this endearing, and they know it’s just one of my quirks. I don’t know what other people think, but I have a fear that they will be bored and annoyed because I can’t seem to tell a succinct account of anything. I cant seem to shake the fear of being misunderstood. I have challenges related to being understood by others frequently enough regardless, so I don’t want to make matters worse by not including relevant information when trying to get my point across.

As I’m sure you can imagine from the beginning of this entry, condensing 35 years of existence down to the words on 4-6 pages was a really stressful assignment. I didn’t know what information was important. I didn’t know how many specific and detailed accounts would be helpful, versus when to generalize. The whole process gave me a lot of anxiety. I ended up writing 3 drafts of this autobiographical account. The first was too analytical and had too many detailed incidents that changed the flow of the information. The second draft was more generalized and less analytical, but had confusing shifts of topic and major flow issues. By draft three, I still didn’t know if what I’d written was relevant, nor if I’d included enough information, but I’d hit page seven of a 4-6 page project, so I tidied it up and called it good. In true obsessive fashion, I’ve re-read that personal history at least a dozen times, trying to determine if it was coherent and contained enough pertinent information to be of use. I still can’t decide, even though at this point it really doesn’t matter since I’ve already submitted it to my doctor for better or worse, but still I can’t stop returning to it and reading it. It’s much the same way conversations and incidents get replayed over and over again in my head for hours, days, and sometimes even years if it was a particularly embarrassing or upsetting situation. Sometimes things that happened in junior high will keep me up at night, feeling as though I’m reliving the experience as I recall it and triggering my fight or flight response. All that unused adrenaline has nowhere to go, so I end up with a headache and indigestion. Being neurotic is both mentally and physically exhausting.

The worst part of this whole assignment, though, was my own reminiscences. I have extremely vivid recall of my long term memories. Things will play back so sharply in my mind that I often feel as though I am thrown right back into the moment. This is really cool if, say for instance, I want to hear the sound of my dad’s voice again. It’s not nearly so fun to relive the time I was raped or the many times I’ve had a hysterical meltdown on people that I love. Since I can’t really control this tendency, I can end up in really horrible mental and emotional state very quickly when sorting through my catalog of memories. Although I didn’t include most of these specific incidents in the essay I turned in to my doctor, I still relived each and every one of them, and the more I process about this potential diagnosis, the more I relive. This eventually manifests in a physical list of symptoms that make me feel pretty miserable. I’ve spent the days since I began this project with horrible headaches, indigestion, and frequent intestinal upsets.

I’m hopeful that journaling about the process will be cathartic. Regardless of the outcome of my assessment, I just want answers. If the answer is no, then at the very least I should still have some ideas of where to begin the next step of figuring myself out. I knew this process was going to be difficult. I didn’t bargain for the exact ways in which it’s been difficult, but I knew there were challenges ahead. Things may very well get worse before I have answers. I accept that the natural consequences of deeper understanding are going to entail a bit of suffering on my part. It will be worth it to me to know the answer I get in the end.

In Which Our Heroine Admits That Maybe She’s Not a Lizard After All….

I’ve decided to start journaling. Or trying to. In the past I’ve not been very successful with this over a long period of time. I enjoy writing and I always feel that I express myself much better in writing than out loud. I also experience a clarifying of my thoughts when I write. The problem I’ve had in the past is largely because I start to feel I’m being overly dramatic with myself when I write. Overly dramatic people aren’t pleasing to others and people who aren’t pleasing don’t blend in. I needed to blend in because I needed no one to know the depths of my differences. Not even me. I’ve really cheated myself out of so many personal insights and realizations with my feelings of self consciousness and worry. I hope that I can overcome this idea that too much introspection is hazardous to the ability to get through life. It’s not. Understanding yourself is important. I’ve been running from myself for too long and it’s time to stop. So, here’s my first entry. Maybe I’ll add it to a blog. There’s only one other post on my Brilliant Chameleon blog and it’s all about feeling different and like I don’t belong. I stopped writing after that post because it felt too overwhelmingly raw. Interestingly enough, I’m here to talk about just that. Ready for a revelation?

I think I’m autistic. I identify very strongly with the information and experiences available to me thus far that describe existence as a female with Asperger’s Syndrome. In a matter of a couple of weeks, I will know for sure as I’m currently seeking professional diagnosis. I’m 35. I’ve lived my entire life up until very recently completely ignorant of this possibility. At 35, you may wonder why it even matters to me. But, it does. Learning that I have autism will completely reframe my life experience. I cannot even explain what it’s like living your entire life not understanding why everything is so hard, why you can’t just be normal, and why you always feel slightly out of step with every other person on the planet.

There are so many things that have happened in my life that I’ve never been able to understand. I replay these things over and over and over again, in vivid, living detail, and no matter how many times I do, nothing is ever made clearer to me. I never glean some insight or have a sudden aha moment that magically illuminates where things went wrong and what I did that caused it. There are a million of these incidents, some huge, life-changing situations, and some unimportant moments that probably aren’t a blip on anyone else’s radar. I replay them all, on a continuous, detailed loop, trying to make sense of things that refuse to make sense. It’s exhausting.

If I am autistic, then that will be my aha moment. That will be my clarity. If I am autistic, then all of this makes sense. If I am autistic, then it becomes clear that the reason I struggle is because I don’t think about the world in the same way that most people do, and that’s okay. I won’t be failing at being normal, I will be spectacularly winning at being autistic. Maybe that distinction doesn’t matter to you. Maybe thinking of me as autistic challenges your perceptions of what autism means. That’s okay. I don’t need your approval or understanding. I need my own approval and understanding.

I know that many people in my life may be surprised and skeptical about this possibility. It’s okay. I was skeptical myself. After all, I’ve made it to 35, I have a happy marriage and am successfully parenting a small army of children. From the outside, I probably appear to be very normal and happy. I am normal and happy, but what no one sees is the constant struggle it is to remain that way. I’m not speaking of depression and anxiety, which are issues I’ve dealt with on a regular basis for pretty much my entire life, but of just existing. Every single thing is hard. The world is too bright, too rough, too full of mysterious and unpleasant odors and loud, obnoxious noises, and there are people everywhere. I’ve spent my entire life feeling different. Not necessarily anything I could put my finger on. Just different. I have always seemed to have thoughts that other people don’t have, felt differently about things than those who surround me, experienced things in a way that just wasn’t the same as everyone else, and been bothered by things that other people just don’t seem to notice. I usually don’t understand a large portion of what’s said in conversation and I have to work really hard to blend in and pass for normal. I’ve gotten really adept at my cloaking skills, and most people probably don’t realize how much I struggle to be present and normal when interacting.

Here’s the kicker. Up until very recently, I thought that everyone experienced these issues and they were just better at making light of it than I was. But they don’t. Even if you’re reading this and thinking, “Yeah? And? Life’s hard to navigate for everyone. That doesn’t make you special or autistic.” Well. I’m sorry that you struggle, too. There are a couple of possibilities that spring to mind. First, have you considered that maybe you need to be evaluated as well? Because it turns out that NOT everyone experiences these problems, and certainly not on the scale to which autistic people do. And second, my experience and diagnosis does not devalue your experience. You don’t have to believe me. I can’t make you. I can tell you that I’m seeking help from a skilled and respected doctor with an enormous amount of experience in the field and that I trust her judgments about whether I’m on the spectrum. I can tell you that if she says that I’m not, I will accept her judgment and I will continue try and figure out why I have so many idiosyncrasies and how I can improve my life experience. But I will not change my truth to make you more comfortable. If you cannot accept what I’m telling you, then fine, but I don’t want or need to argue about it.

The Lizard Among You

 

You are all like alien insects to me. I do not understand you. I walk among you. I find you fascinating. But, I am not one of you. I cannot be one of you. I am something… Other.

Do not mistake me. Insects are fascinating. I enjoy learning of their many attributes. I remain amazed by their communication with one another. Their societies and intricate interactions are entrancing. I could dedicate years of my life to learning everything there is to know about the insect world. But, I can never become a part of it. So it is with my existence among humans.

I look like you. I even pass as one of you. But I do not and cannot understand you. From the moment of my birth, I’ve dedicated my life to trying to understand and duplicate your interactions. I’ve studied you. I’ve tried to emulate you. I’ve managed to blend amongst you like a chameleon. On the outside, my imitation is nearly flawless. On the inside, it’s another story entirely. Inside, I am engaged in a delicate balancing act. I cannot give away my identity and risk showing that I am an imposter. One wrong move and everything crumbles. One false step and my secret is out. If you discover that I am not like you, I will no longer be just an impartial observer. I will be a known outsider. The only thing that is worse than being an outsider is the idea of those who surround you knowing that you are, and have always been, an outsider.

That is the world I live in. Never truly a part of your society, but balanced precariously on a precipice that can only lead to complete exclusion. How does one reconcile a desperate need for companionship with an undying loneliness even among those whom are called friend or loved one? In a crowded room, I am always alone. Even with a smile upon my lips, my soul bleeds. I wander through your world ever alone. I feel constantly out of step, out of time, out of reality with all those I encounter. It’s like communicating with someone through a heavy veil. Everything is muted, muffled, barely intelligible. We catch only every third word that the other speaks. True intimacy is impossible.