*this is an edited version of the first post I ever wrote, in March 2017, about my ASD/Asperger diagnosis*
The saying “when you hear hoofbeats think horses NOT zebras” does not apply to me……I am a Zebra! 2 days ago, at the age of 31, I found out that I have Aspergers Syndrome……..once again I am probably a statistical anomaly (as currently the statistics are 4:1 – for every 4 males diagnosed there is only 1 female) and, as people don’t understand that there is a difference between how AS presents between the genders, it has taken this long to work it out. I am so grateful that I have the right psychologist in my life at the right time for this diagnosis (as, even though I wish I’d known earlier, I don’t think that I would have been able to manage it as well prior to now) who could see beyond other issues to see that there was something else at play here than reactions to things in my past. So far, the responses from some people (as very few know just yet) has been complete disbelief as I don’t fit what they see and have experienced as the traits that someone with AS exhibits so, with that in mind, I have done an exorbitant amount of research and am condensing it, as best I can, into this very open post. Though not every aspect of every one of these areas applies to me, there are multiple elements of each that definitely do. In Samantha Crafts retired and new blog she singles out 10 traits that cover the female presentation of AS. https://everydayaspergers.com/2012/02/10/aspergers-traits-women-females-girls/ (retired blog) https://everydayaspie.wordpress.com/2016/05/02/females-with-aspergers-syndrome-checklist-by-samantha-craft/ (new blog – this contains a far more comprehensive list) The following is the list taken from the first blog site mentioned.
TEN TRAITS of WOMEN WITH AS
1) We are deep philosophical thinkers and writers; gifted in the sense of our level of thinking.
Perhaps poets, professors, authors, or avid readers of nonfictional genre. I don’t believe you can have Aspergers without being highly-intelligent by mainstream standards. Perhaps that is part of the issue at hand, the extreme intelligence leading to an over-active mind and high anxiety. We see things at multiple levels, including our own place in the world and our own thinking processes. We analyze our existence, the meaning of life, the meaning of everything continually. We are serious and matter-of-fact. Nothing is taken for granted, simplified, or easy. Everything is complex.
2) We are innocent, naive, and honest.
Do we lie? Yes. Do we like to lie? No. Things that are hard for us to understand: manipulation, disloyalty, vindictive behavior, and retaliation. Are we easily fooled and conned, particularly before we grow wiser to the ways of the world? Absolutely, yes. Confusion, feeling misplaced, isolated, overwhelmed, and simply plopped down on the wrong universe, are all parts of the Aspie experience. Can we learn to adapt? Yes. Is it always hard to fit in at some level? Yes. Can we out grow our character traits? No.
3) We are escape artists.
We know how to escape. It’s the way we survive this place. We escape through our fixations, obsessions, over-interest in a subject, our imaginings, and even made up reality. We escape and make sense of our world through mental processing, in spoken or written form. We escape in the rhythm of words. We escape in our philosophizing. As children, we had pretend friends or animals, maybe witches or spirit friends, even extraterrestrial buddies. We escaped in our play, imitating what we’d seen on television or in walking life, taking on the role of a teacher, actress in a play, movie star. If we had friends, we were either their instructor or boss, telling them what to do, where to stand, and how to talk, or we were the “baby,” blindly following our friends wherever they went. We saw friends as “pawn” like; similar to a chess game, we moved them into the best position for us. We escaped our own identity by taking on one friend’s identity. We dressed like her, spoke like her, adapted our own self to her (or his) likes and dislikes. We became masters at imitation, without recognizing what we were doing. We escaped through music. Through the repeated lyrics or rhythm of a song–through everything that song stirred in us. We escaped into fantasies, what could be, projections, dreams, and fairy-tale-endings. We obsessed over collecting objects, maybe stickers, mystical unicorns, or books. We may have escaped through a relationship with a lover. We delve into an alternate state of mind, so we could breathe, maybe momentarily taking on another dialect, personality, or view of the world. Numbers brought ease. Counting, categorizing, organizing, rearranging. At parties, if we went, we might have escaped into a closet, the outskirts, outdoors, or at the side of our best friend. We may have escaped through substance abuse, including food, or through hiding in our homes. What did it mean to relax? To rest? To play without structure or goal? Nothing was for fun, everything had to have purpose. When we resurfaced, we became confused. What had we missed? What had we left behind? What would we cling to next?
4) We have comorbid attributes of other syndromes/disorders/conditions.
We often have OCD tendencies (Obsessive Compulsive Disorder), sensory issues (with sight, sound, texture, smells, taste), generalized anxiety and/or a sense we are always unsafe or in pending danger, particularly in crowded public places. We may have been labeled with seemingly polar extremes: depressed/over-joyed, lazy/over-active, inconsiderate/over-sensitive, lacking awareness/attention to detail, low-focus/high-focus. We may have poor muscle tone, be double-jointed, and lack in our motor-skills. We may hold our pencil “incorrectly.” We may have eating disorders, food obsessions, and struggles with diet. We may have irritable bowel, Fibromyalgia, chronic fatigue, and other immune-challenges. We may have sought out answers to why we seemed to see the world differently than others we knew, only to be told we were attention seekers, paranoid, hypochondriacs, or too focused on diagnoses and labels. Our personhood was challenged on the sole basis that we “knew” we were different but couldn’t prove it to the world and/or our personhood was oppressed as we attempted to be and act like someone we were not. We still question our place in the world, who we are, who we are expected to be, searching for the “rights” and “wrongs;” and then, as we grow and realize there are no true answers, that everything is theory-based and limited, we wonder where to search.
5) We learn that to fit in we have to “fake” it.
Through trial and error we lost friends. We over-shared, spilling out intimate details to strangers; we raised our hand too much in class, or didn’t raise our hand at all; we had little impulse control with our speaking, monopolizing conversations and bringing the subject back to ourselves. We aren’t narcissistic and controlling–we know we are not, but we come across that way. We bring the subject back to ourselves because that is how we make sense of our world, that is how we believe we connect. We use our grasp of the world as our foundation, our way of making sense of another. We share our feelings and understandings in order to reach out. We don’t mean to sound ego-centered or over zealous. It’s all we know. We can’t change how we see the world. But we do change what we say. We hold a lot inside. A lot of what we see going on about us, a lot of what our bodies feel, what our minds conjecture. We hold so much inside, as we attempt to communicate correctly. We push back the conversational difficulties we experience, e.g., the concepts of acceptable and accurate eye contact, tone of voice, proximity of body, stance, posture–push it all back, and try to focus on what someone is saying with all the do’s and don’ts hammering in our mind. We come out of a conversation exhausted, questioning if we “acted” the socially acceptable way, wondering if we have offended, contradicted, hurt, or embarrassed others or ourselves. We learn that people aren’t as open or trusting as we are. That others hold back and filter their thoughts. We learn that our brains are different. We learn to survive means we must pretend.
6) We seek refuge at home or at a safe place.
The days we know we don’t have to be anywhere, talk to anyone, answer any calls, or leave the house, are the days we take a deep breath and relax. If one person will be visiting, we perceive the visit as a threat; knowing logically the threat isn’t real, doesn’t relieve a drop of the anxiety. We have feelings of dread about even one event on the calendar. Even something as simple as a self-imposed obligation, such as leaving the house to walk the dog, can cause extreme anxiety. It’s more than going out into society; it’s all the steps that are involved in leaving–all the rules, routines, and norms. Choices can be overwhelming: what to wear, to shower or not, what to eat, what time to be back, how to organize time, how to act outside the house….all these thoughts can pop up. Sensory processing can go into overload; the shirt might be scratchy, the bra pokey, the shoes too tight. Even the steps to getting ready can seem boggled with choices–should I brush my teeth or shower first, should I finish that email, should I call her back now or when I return, should I go at all? Maybe staying home feels better, but by adulthood we know it is socially “healthier” to get out of the house, to interact, to take in fresh air, to exercise, to share. But going out doesn’t feel healthy to us, because it doesn’t feel safe. For those of us that have tried CBT (Cognitive Behavior Therapy), we try to tell ourselves all the “right” words, to convince ourselves our thought patterns are simply wired incorrectly, to reassure ourself we are safe…the problem then becomes this other layer of rules we should apply, that of the cognitive-behavior set of rules. So even the supposed therapeutic self-talk becomes yet another set of hoops to jump through before stepping foot out of the house. To curl up on the couch with a clean pet, a cotton blanket, a warm cup of tea, and a movie or good book may become our refuge. At least for the moment, we can stop the thoughts associated with having to make decisions and having to face the world. A simple task has simple rules.
7) We are sensitive.
We are sensitive when we sleep, maybe needing a certain mattress, pillow, and earplugs, and particularly comfortable clothing. Some need long-sleaves, some short. Temperature needs to be just so. No air blowing from the heater vent, no traffic noise, no noise period. We are sensitive even in our dream state, perhaps having intense and colorful dreams, anxiety-ridden dreams, or maybe precognitive dreams. Our sensitivity might expand to being highly-intuitive of others’ feelings, which is a paradox, considering the limitations of our social communication skills. We seek out information in written or verbally spoken form, sometimes over-thinking something someone said and reliving the ways we ought to have responded. We take criticism to heart, not necessarily longing for perfection, but for the opportunity to be understood and accepted. It seems we have inferiority complexes, but with careful analysis, we don’t feel inferior, but rather unseen, unheard, and misunderstood. Definitely misunderstood. At one point or another, we question if in fact we are genetic hybrids, mutations, aliens, or displaced spirits–as we simply feel like we’ve landed on the wrong planet. We are highly susceptible to outsiders’ view points and opinions. If someone tells us this or that, we may adapt our view of life to this or that, continually in search of the “right” and “correct” way. We may jump from one religious realm to another, in search of the “right” path or may run away from aspects of religion because of all the questions that arise in theorizing. As we grow older, we understand more of how our minds work, which makes living sometimes even more difficult; because now we can step outside ourselves and see what we are doing, know how we our feeling, yet still recognize our limitations. We work hard and produce a lot in a small amount of time. When others question our works, we may become hurt, as our work we perceive as an extension of ourselves. Isn’t everything an extension of ourselves–at least our perception and illusion of reality? Sometimes we stop sharing our work in hopes of avoiding opinions, criticism, and judgment. We dislike words and events that hurt others and hurt animals. We may have collected insects, saved a fallen bird, or rescued pets. We have a huge compassion for suffering, as we have experienced deep levels of suffering. We are very sensitive to substances, such as foods, caffeine, alcohol, medications, environmental toxins, and perfumes; a little amount of one substance can have extreme effects on our emotional and/or physical state.
8) We are ourselves and we aren’t ourselves.
Between imitating others and copying the ways of the world, and trying to be honest, and having no choice but to be “real,” we find ourselves trapped between pretending to be normal and showing all our cards. It’s a difficult state. Sometimes we don’t realize when we are imitating someone else or taking on their interests, or when we are suppressing our true wishes in order to avoid ridicule. We have an odd sense of self. We know we are an individual with unique traits and attributes, with uniques feelings, desires, passions, goals, and interests, but at the same time we recognize we so desperately want to fit in that we might have adapted or conformed many aspects about ourselves. Some of us might reject societal norms and expectations all together, embracing their oddities and individuality, only to find themselves extremely isolated. There is an in between place where an aspie girl can be herself and fit in, but finding that place and staying in that place takes a lot of work and processing. Some of us have a hard time recognizing facial features and memorize people by their clothes, tone of voice and hairstyle. Some of us have a hard time understanding what we physically look like. We might switch our preference in hairstyles, clothes, interests, and hobbies frequently, as we attempt to manage to keep up with our changing sense of self and our place. We can gain the ability to love ourselves, accept ourselves, and be happy with our lives, but this usually takes much inner-work and self-analysis. Part of self-acceptance comes with the recognition that everyone is unique, everyone has challenges, and everyone is struggling to find this invented norm. When we recognize there are no rules, and no guide map to life, we may be able to breathe easier, and finally explore what makes us happy.
9) Feelings and other people’s actions are confusing.
Others’ feelings and our own feelings are confusing to the extent there are no set rules to feelings. We think logically, and even though we are (despite what others think) sensitive, compassionate, intuitive, and understanding, many emotions remain illogical and unpredictable. We may expect that by acting a certain way we can achieve a certain result, but in dealing with emotions, we find the intended results don’t manifest. We speak frankly and literally. In our youth, jokes go over our heads; we are the last to laugh, if we laugh at all, and sometimes ourselves the subject of the joke. We are confused when others make fun of us, ostracize us, decide they don’t want to be our friend, shun us, belittle us, trick us, and especially betray us. We may have trouble identifying feelings unless they are extremes. We might have trouble with the emotion of hate and dislike. We may hold grudges and feel pain from a situation years later, but at the same time find it easier to forgive than hold a grudge. We might feel sorry for someone who has persecuted or hurt us. Personal feelings of anger, outrage, deep love, fear, giddiness, and anticipation seem to be easier to identify than emotions of joy, satisfaction, calmness, and serenity. Sometimes situations, conversations, or events are perceived as black or white, one way or another, and the middle spectrum is overlooked or misunderstood. A small fight might signal the end of a relationship and collapse of one’s world, where a small compliment might boost us into a state of bliss.
10) We have difficulty with executive functioning.
The way we process the world is different. Tasks that others take for granted, can cause us extreme hardship. Learning to drive a car, to tuck in the sheets of a bed, to even round the corner of a hallway, can be troublesome. Our spacial awareness and depth-awareness seems off. Some will never drive on a freeway, never parallel park, and/or never drive. Others will panic following directions while driving. New places offer their own set of challenges. Elevators, turning on and off faucets, unlocking doors, finding our car in a parking lot, (even our keys in our purse), and managing computers, electronic devices, or anything that requires a reasonable amount of steps, dexterity, or know-how can rouse in us a sense of panic. While we might be grand organizers, as organizing brings us a sense of comfort, the thought of repairing, fixing, or locating something causes distress. Doing the bills, cleaning the house, sorting through school papers, scheduling appointments, keeping track of times on the calendar, and preparing for a party can cause anxiety. Tasks may be avoided. Cleaning may seem insurmountable. Where to begin? How long should I do something? Is this the right way? Are all questions that might come to mind. Sometimes we step outside of ourselves and imagine a stranger entering our home, and question what they would do if they were in our shoes. We reach out to others’ rules of what is right, even in isolation, even to do the simplest of things. Sometimes we reorganize in an attempt to make things right or to make things easier. Only life doesn’t seem to get easier. Some of us are affected in the way we calculate numbers or in reading. We may have dyslexia or other learning disabilities. We may solve problems and sort out situations much differently than most others. We like to categorize in our mind and find patterns, and when ideas don’t fit, we don’t know where to put them. Putting on shoes, zipping or buttoning clothes, carrying or packing groceries, all of these actions can pose trouble. We might leave the house with mismatched socks, our shirt buttoned incorrectly, and our sweater inside out. We find the simple act of going grocery shopping hard: getting dressed, making a list, leaving the house, driving to the store, and choosing objects on the shelves is overwhelming.
I’m not going to go into too much detail at this point of how exactly these things effect me but the main things that effect me is my ability (or lack) to function in groups and social situations. This does not mean that I cannot be social but that its anxiety ridden and exhausting. The knowledge that I have to go somewhere can sap hours out of my days (plural) thinking and planning it in an attempt to manage and attend things. This is why, all too frequently, I can’t manage attending things like church, parties or other social events that call for me to be surrounded by lots of people and different sounds and experiences. Again, most people wouldn’t know this as, when I’m in a social situation I do a great job of interacting “normally” (and I do enjoy the conversations and interactions I have with you all). Understanding this makes my absence from social situations make more sense and is allowing me to not be so hard on myself when I wake up and realise that, on that day, at this moment, I feel totally overloaded and the idea of leaving the house is just too much – no matter how much I was looking forward to whatever it was. Another every day effect of my brains processing is my inability to manage things (that effect me) being done or happening differently to the way I see them or need them to be. Prior to this new information it was always assumed (by myself and others) that these things were very strong preferences and that my reaction to them not happening was over the top. Let me be clear, to the neuro-typical person (who does not have a differing way of processing the world) my reactions are over the top and out of proportion but, to me, they are not. With this new information it is easier for me to understand that these are not preferences at all, but that these things do actually effect my function.
1 WEEK UPDATE: I am in love with my CRAZY; I have had the best week quite possibly of my life. It has been surprising and freeing to feel like I have an explanation for things. It’s been a fun experience to start to claim some of my “quirks” and they are now all referenced under the heading of “that’s just part of my crazy………” but that’s the thing, it is MY crazy, it belongs to me and is a innate part of who I am. It is as much a part of me as my heart defect, grey eyes and fair skin. Another excitement, which also makes me sad at the same time, is that I not longer feel like people are going to judge me badly for some of the things I do. I have spent years trying to keep a lot of things out of the “public” eye, trying to only follow through on them either in private or in ways that weren’t obvious. I felt like, and on occasion was treated like, some of these things weren’t necessary and things I had to stop or break. This got to a point where it wasn’t even other people’s judgements that effected me but my own judgement. I thought these actions and things were wrong. I thought that I needed fixing but not once did I ever consider that maybe there was nothing wrong; just different. I’m not going to lie, there were moments I allowed myself to admit that there were things I didn’t WANT to change but not wanting to change something but now I’m allowing myself the added option that there are some things that would actually do more harm than good to be changed.
This was a message I sent to a family member during the week. ‘As for the aspergers thing, its actually feeling like its part of renewing my mind as it will help me understand what is a case of how I process and make clear the things that I need to continue to work on. I also feel the least frustrated with myself than I have in years as I now understand that some of these things were not a case of me not working hard enough but simply that they are how I am. I have also been searching (for years) to differentiate what is me and what is reactionary (to the abuse etc) and this will help with that. It is an amazing and (so far) good thing. Don’t get me wrong though, I still plan to work and pray over my life and choices as I believe God wants me to function successfully in this life, although this new info will change the concept of what functioning means, it doesn’t take away from the desire and necesity to do the work.’ I’ve also had the amazing experience, since sharing this info with close family and friends, of being told that regardless of the why, they’ve always known about my quirks and not only loved me inspite of them, but they’ve all loved me because of those things. They’ve accepted things about my personality and identity as “normal” (for me) while I’ve been trying like crazy to change those things. I love that I am loved for just being crazy old me and that NONE of this has stood in my way of being accepted, respected and honoured as a friend and family member.