girls

10 Years in the Making! Everyday Aspergers

| Aspergers Girls

This Blog Everyday Asperger’s by Samantha Craft is retired. Her company website is myspectrumsuite.com  Thank you for the community and support you have offered through the years.

 

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In 2004, I was called to write. I dedicated myself to write every day for a year. I only missed one day and completed a 250-page memoir. I often wrote 4 to 10 hours a day. I spent the next years editing because my dyslexia and dysgraphia make it very challenging for me to detect errors. I knew nothing of writing. It was pretty substandard material at the start. I didn’t even know when to capitalize the word ‘mom’ or how to use a semi-colon. It took me three years of writing and editing to find ‘my voice.’

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I taught myself to write by studying other books, relentlessly. I took notes and would write pages and pages of words I found (in other books) on notepads. In 2012, I started Everyday Asperger’s (blog) and  wrote almost every day for a year. I then continued posting blog posts several times a month, for another two years. Each Everyday Asperger’s blog post took a long time to edit. Then, after it was online, I would reread the words for an hour (at least) trying to find all the small mistakes that I couldn’t find the first time. (I didn’t mind; it was a type of stimming for me.) At the time of writing the blog, I also reedited some of the original (year 2004) childhood stories.

Recently, after 3.5 years of writing over 1,300 pages online, I began the process for my book: Everyday Aspergers (EA). I tore through 1,200 single-spaced pages of this blog, some of which were my childhood stories, picking and choosing, and then piecing the posts together like a puzzle. This took a solid two months of working almost daily. From there, I refined and refined, trimming most posts to 1/3 original size; some of those posts, if not most, were originally two to three pages long. Next I found little parts that got cut but were still gold nuggets and found places to sprinkle them in.

After that I polished and polished and polished, and began to edit. Soon the final editing took place from December to today. Most weeks I spent the equivalent of a full-time job editing. I also employed the help of a professional editing team. To date, the manuscript for Everyday Aspergers has gone through four editing rounds, in which I read the words (at first 717 pages, then 615 pages, then 417 pages) from start to end. Each page was reedited each time! I’d spend marathon days, up to 12 hours straight editing. Some of the childhood stories have been edited and polished at minimum 15 hours per page! Counting the years before, I’d say the book itself has well over 5,000 hours of editing alone. That doesn’t count any of my writing time. It’s a HUGE accomplishment. It’s not just something I threw together. It has a huge heart and huge effort behind my endeavor.

I cannot wait for the book to be in my hands. More so, I cannot wait for those who wish to have the book to hold the story in their hands! I’ve been waiting since 2004, when I had a dream.

Much love,
Samantha Craft

I updated the Checklist for Females with Aspergers here

Me on Twitter: aspergersgirls

More about the book on  new website

 

 

 

 

494: 10 Ways I Can Spot an Aspie Girl

| Aspergers Girls

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10 Ways I Can Spot an Aspie Girl

1. Deep, soulful eyes which perhaps dip down slightly and/or are very distinguished and large. There is someone in there with a story. There is truth.

2. An uncomfortable smile that cannot find a home which fluctuates between a chiseled, serious frown and the most amazing genuine smile, wherein the whole self and soul lights up—a childlike expression, too pure to be mistaken for anything else than authenticity.

3. Continual statements of second-guessing, checking for understanding, clarifying self, and offering out extra information in an attempt to be understood. Indications of never reaching a full conclusion, as there are limitless possibilities. Questioning self, harvesting advice, and then tossing everything out and starting anew. Having the kindling of multiple thoughts about multiple directions, all at the same time.

4. Fleeting, unnatural eye contact, that is either over-intense and attempting to linger or constantly moved about to find an object of focus. Unusual gestures whilst conversing, and seemingly never fully engaged in the speaker, unless strongly intrigued; and even then the imagination takes over and causes a drifting appearance. Unless overtaken with a special topic of interest; then all mannerisms and ways of being become forgotten, and all that exists is the spoken word.

5. Eyebrows that raise up when a smile is formed, or a distinct maneuvering of the facial features, as if to represent who they are, even when smiling, as to not distort a truth.

6. Unnatural appearing stances and movements; never quite comfortable moving in body unless preoccupied and/or in the midst of strong emotions or a special topic of interest.

7. A sweetness that isn’t outgrown entangled with an enchanting childlike nature and naiveté. Swirling within a constant flux of varying emotions, and heavily influenced by the happenings of everything and everyone.

8. An undeniable unique way of self-expression in all forms: in thought, in writing, in art. All is an extension of the greater self. Spread out with an openness lacking self-need and wanting; and instead represented by an honest soul in search of connection.

9. A flowing nature with undercurrents of stability and predictability. At first glance the person may seem unstable, but with careful observation she follows the ebbs and flows of life, much like the tides to the moon, and the flowers to seasons. She rises and falls. She opens and closes. She is a manifestation of the greater good of cosmic unity, of togetherness, of the interwoven web of us.

10. Her deep reflective state, no matter the topic or situation. The way in which intensity is brought into the room, even as a lightness of being remains. There is a quandary of sorts, an advanced duality, in which she is powerful, yet she is meek, she is substantial yet she is invisible, she is love yet she is fear. She carries the badge of courage in her heart, the white dove of humility in her hands, and everywhere she goes she is either touched or touches down, leaving a trail of fairy dust, or a slough of mud, either way, the path altered.

Hello All.

I hope you are well during these challenging times.

I am writing to provide a few updates (2020) for anyone who happens upon this homepage.

My third blog is a bit hard to find, since I changed the domain name. Here is the direct link to Everyday Autistic. My artist’s blog is Belly of a Star.

Here is the Autistic Trait’s List.

Here is my company website Spectrum Suite LLC, which includes 100s of resources and our services page.

Here is a link to one of my Linkedin Articles that will bring you to my profile and some articles there!

My new works include much advocacy for Universal Design in the Workplace, which equates to true inclusivity, where all employees are given opportunity to the same support measures and community engagement, such as the same best-practices interviews, job coaches, support team; not just one marginalized minority, e.g., autistic individuals.

I am working on a book on empowerment on the autism spectrum.

I am my waving from afar, and wishing you so very well! I cannot believe it’s been 8 YEARS!

I now call myself a ‘neuro-minoriy’ (coined by Judy Singer) and consider myself a neurodivergent-blend (coined by me!). I am neurodivergent-blend because of my autistic profile, gifted-intellect diagnosis, dyslexia, dyspraxia, OCD, etc. etc. etc.

Feel free to connect on twitter or Facebook.

I’m on the bottom right, in the photo below, speaking at the Stanford Neurodiversity Summit. You can find out what we’ve been up to on the website. Here is a 10 hr.+ video of Day 2 at the Summit!

My book is now available around the world in paperback! Check out Barnes and Noble or Amazon.

Everyday Aspergers is an unusual and powerful exploration of one woman’s marvelously lived life. Reminiscent of the best of Anne Lamott, Everyday Aspergers jumps back and forth in time through a series of interlocking vignettes that give insight and context to her lived experience as an autistic woman. The humor and light touch is disarming, because underneath light observations and quirky moments are buried deep truths about the human experience and about her own work as an autistic woman discerning how to live her best life. From learning how to make eye contact to finding ways to communicate her needs to being a dyslexic cheerleader and a fraught mother of also-autistic son, Samantha Craft gives us a marvelous spectrum of experiences. Highly recommended for everyone to read — especially those who love people who are just a little different.”~ Ned Hayes, bestselling author of The Eagle Tree

470: Past Twelve: Aspergers

| Aspergers Girls

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I have to say that twelve was rather easy. I was still very much a child, almost fairy-like, or elven, always into innocent mischief and adventure.

The turmoil hit at the age of thirteen. That is when my hormones shifted and life suddenly became bleak, overwhelming and unmanageable. I discovered a new form of escapism then, a more ‘difficult’ escapism than before; I became more observant of myself and actions, understanding complexities in a new degree that felt unfamiliar and frightening. Before, I would leap into my imagination quite naturally and without pretense. Now, it seemed as if I escaped to get away from some pending danger.

Wherein my world once felt light and airy, full of possibility, and all things magical and hopeful, it now felt dark, dingy and doom-filled.

I didn’t have an active social life for most of my teen years, choosing instead one girlfriend to hang out with and one boyfriend to adore. I had the same best friend from seventh grade until I graduated high school. I never thought to have many friends. I hung out with her, copied her, adopted her taste in music and clothes. I think because I was pretty (but didn’t know it), I easily found boyfriends. I tended to stick with one boy as long as I could or until circumstances forced a breakup. I too, copied what I thought he liked. I tried to appease. But with young men, I found myself continually lost and alone with a separation between us I could not understand or explain. While having a significant other brought me this sense of being less fearful in public and the ability to go out and do more, the relationship also brought me this deep seeded feeling of being complicated, misunderstood, too emotional, and never kind enough.

I could write a full book on the challenges of my teenage years. Here I have attempted to summarize some of the key points:

1. Suffering with feelings of extreme isolation and oddness, but not being able to understand or articulate why I felt this way.

2. Wanting to be like my peers but not wanting to be like my peers. Recognizing their character traits disturbed me, particularly manipulation, game-playing, deceit, cliques (groups of children that didn’t allow other children into the group), lying, cruelty, pretending and gossip.

3. Not knowing why, for most of my childhood, despite circumstances, I had felt happy and content, and that now all of a sudden I felt a deep sadness and a disconnection from the rest of the world.

4. Developing an over-analytical sense of self that encompassed all areas, including how I looked, how I moved, how I spoke and even how I thought and reasoned.

5. Developing a hyper-critical awareness of my appearance, wherein before I could care less. It was an extreme shift from being comfortable in my skin to wanting to change who I was. Along with this intensity of dislike towards my own image, I also did not recognize my own face in the mirror. I had no idea the size of my eyes, my face, my nose, or lips. Nothing seemed distinguishable, and every time I looked in the mirror the image seemed unfamiliar. I consciously did not realize this was happening. I did not understand why I looked at my image so much and analyzed it. I thought I was vain and self-centered, even as I hated how I appeared and assumed no one liked my looks.

6. It did not matter how many times someone told me I was beautiful on the outside, I couldn’t see it, and didn’t believe it. I twisted compliments in my mind. I took a sincere compliment about my appearance and truly believed that the observer was lying, blind, misinformed, tricking me or not educated.

7. I did not trust life. I began to see the unpredictable nature of adults and teenagers. No one around me changed, but suddenly an invisible barrier was lifted and I saw reality more clearly. I had seemed to be coated before, protected in some shield in which the world appeared wonderful and filled with love. I had trusted everyone and believed in everyone; yet now, I believed the world was a scary place, and thought that I had been born on the wrong planet.

8. I didn’t understand my own emotional intensity. I loved deeply. I longed. I was passionate. I was a poet. I was this exploding young woman filled with romantic intentions and the want to get married and have children. I didn’t have any interest in being a teenager. Some part of me wanted to skip from young childhood straight into adulthood. I saw young men as a means of escaping the destitute of reality. I jumped into a fantasy land of tomorrow, when I would be raising a family, and far beyond high school and all its pains.

9. I still trusted everyone. I trusted strangers. I trusted anyone who was an adult. I trusted children. I trusted my peers. I shared from the heart. I told my deepest secrets. I cried openly. And people did not respond in a manner that was beneficial to me. I was preyed upon in all ways: physically, emotionally, spiritually and logically. People could sense I was innocent, naive, and inexperienced. I was very much a victim without knowing I was a victim. I couldn’t tell right from wrong. Because I assumed everyone was good at heart, I assumed everything anyone did was ‘normal’ and ‘okay.’ I didn’t understand that concept of boundaries or self-protection. No one taught me. I didn’t know boundaries existed. I believed people.

10. Concepts that came naturally to other girls did not come naturally to me. I did not understand or follow fashion. I didn’t think to. It never crossed my mind to try to fit in and assimilate to the teenage world. I was still very much twelve inside, even as my body changed. I didn’t start dressing like my peers and learning how to apply makeup until I was ostracized, ridiculed, and singled-out.

11. I didn’t understand sexuality. I had a cute figure and was well-endowed. I did not understand how different ways I walked, sat, or bent over could be perceived as flirtatious and even labeled ‘slutty.’ I didn’t know that I had turned physically into a young woman who men found attractive. Even as they called out names at me, or shouted inappropriate comments about my body in the halls of high school, I didn’t connect the dots. I didn’t know what I had done. And in not knowing what I had done, I didn’t know how to make changes in an attempt to stop others’ behaviors.

12. I copied television and movie stars. I acted like my favorite stars. My role models were a brunette from Gilligan’s Island and a brunette from Charlie’s Angels. And I moved and acted like them, or some other dark-haired daytime soap opera actress. I didn’t know I did this, but I did it nonetheless. I needed a role model, and I found mine on television. Mimicking the traits of sensual and sexual adult females did not add to my ability to fit in; my actions instead served to highlight my inadequacies and oddities. I did things halfway, some very awkward child trying to catch up to her peers and changing body, and not knowing how to even begin, and not recognizing that her subconscious chosen methods were damaging her chances of fitting in further.

13. I didn’t understand my bodily changes and the monthly menstrual cycle. The change had been explained to me in various classes at school, briefly by a parent, and in review of some books, but that information was not enough. I think, in retrospect, I had needed someone to walk me through the process daily for the first year. To explain and reexplain, to reassure me I wasn’t dying or sick, to comfort me when the new and unfamiliar body pains and sensations came, to give me more advanced biological descriptions of what was happening to me. I didn’t do well with change. Change scared me. And here, my entire body was not my body anymore. It was terrifying. I didn’t understand the entire concepts of sex, of the ways I might get pregnant or how to tell if what my peers said was truth or lies. I didn’t understand how things worked.

14. I didn’t understand the concept of holding back. I said things like I saw them and felt them; that is until I was so shamed in school, I clamped up and hid in the corner writing song lyrics in pencil all over my desktop. I didn’t understand social rules and social games. I came across as overzealous, as immature, as goofy, giddy, and somewhat of a ditz. I didn’t understand most jokes. I laughed a lot, out of embarrassment or discomfort. I developed a nervous giggle. I seemed fake to other people, when ironically I was truly myself. People questioned me, especially my facial expressions and body language, and worse they criticized me. If I walked with my head down, with my eyes glued to the floor, my peers claimed I was rude and stuck up, too good for them. If I smiled, I was a flirt. If I avoided eye contact, I was showing disrespect or further showing I thought I was hot stuff and ‘all that.’ I didn’t know how to be. I wasn’t given the tools or the freedom. Everything I did was judged or deemed wrong. I quickly began to surmise the world was a terrible place in which no one was allowed to be herself. And then I concluded I didn’t even know who my self was.

15. I cried a lot. I isolated myself a lot. All the traits of Aspergers were triggered as puberty hit. I was overwhelmed with entirely too much for any child. Not only was my home life unpredictable and chaotic, not only was my body changing, my peers suddenly my enemies, but my own mind was turning against me. I couldn’t tell who I was, what I wanted, and had no idea where to go for help. When I tried to tell adults I was afraid to live, they claimed I was seeking attention, that I was fine, or that I was creating drama. When I went crying to the school counselor, he told me plainly that I was a beautiful attractive and intelligent young lady. And questioned what I could possibly have to complain about. I was attacked on all fronts. No one believed me when I said I felt different and alone. No one believed the deep pain and shattering of my life I was undergoing. I became suicidal, never able to go through with any attempts, but always wondering how it would feel to escape this life. I became more and more of a recluse and found small ways to make my life more manageable. I ate the same lunch every day. I kept the same routine. I knew what path to walk in the halls at school. I knew how to hide. I learned how to pretend to be someone else in mannerisms, dress and behavior. I became that which was nothing but a ghost of me, and I lived that way for most of my days.

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Everyday Aspergers the book available in 2016. Join our Facebook Clan or follow the blog for newest information on book release, including contests and give aways. 🙂 ~ Sam

poetry from my teenage years

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431: Confessions of an Aspie Girl

| Aspergers Girls

Confessions of an Aspie Girl

1. I hate getting up in the morning. Why? It’s not that I don’t have the ability to like the day. I just don’t want to have to get up and do it all over again. I mean I just did the exact same thing the day before, e.g, shower, brush teeth, choose clothes, discard clothes, choose different clothes, stress about my food intake, wonder if coffee is good for me, stress over my next step—and man was it fricken exhausting! No one, well most people, has the slightest clue how much energy I exert just to be. I mean when I hear the words “be in the moment” and “stay present,” I am already thinking RUN! For me, being is like running up hill sideways with my eyes crisscrossed and my feet bound in piercing Velcro, while my arms are flapping to the beat of someone else’s heartbeat and I’m trying to recite the alphabet backwards. By the first hour of thinking and mundane activity, I am smashed. Surfer-punched smack off her surfboard and pounded into the rocks. Theme music in the background: WIPED OUT. And then, lucky me, if I conquer the day, at least a portion of the day, say 18.984 percent, then I get to retreat to the couch that has a permanent dent from my lounging hours, where I try to rest but end up, for the trillionth time, in some complex dialogue with a part of myself that really never learned to shut her mouth.

2. I like people but they bug me. Actually, I adore lots and lots of people, but I see way too much. I see past the nuances and suggestions and idioms and babble, and I grow so weary. I am thinking and pondering about approximately one hundred things and tangents compared to each singular concept another brings up in conversation. I am distracted by the webbing-style of my brain that largely resembles a graphic organizer big corporations use to plot out their schematics for the next decade. Trying to listen to a conversation in completion is an impossibility, unless I am in my Zen moment and steadily repeating each word said by my acquaintance back to myself and staring off with a peaceful tranquil demeanor. Even then, I am reviewing the rules of active listening and trying to recall at least a page of my Buddhist teachings. In the silence, I am baffled by all that my senses are taking in. I leap and run all over in my head, dissecting the molecular bits of a person. So much to chew off and digest that I am actually considering the act of investing in a pair of dark glasses—so dark I can’t see—so that at least one sense is blocked. Then I only have to deal with the distraction of the bombardment of various noises, odors, textures, and bodily sensations. At least with glasses I won’t be ice-skating about in thought regarding visual vomit, about to fall on my butt and shatter the ice, whilst distracted by the idiotic protruding mole on someone’s face reaching out and wanting to form a conversation with me. “Hi I am mole. I am big. I used to have a hair in me like a witch, but it was plucked out. Do you wonder why hairs grow faster on moles? Maybe you should Google it? What are the signs of irregular moles again? For a mole, I look healthy. Still ugly, though. I would have removed me. How much does it cost? I wonder if I have a soul, and where I would go if you burn me off. Hey, maybe you should listen to what the person who owns my face is saying.”

3. Forming thoughts hurts, but forming sentences is far worse. I connect rules to words. Yes, each word is alive and a willing or non-willing participant. Some words deserve center stage, depending on my mood, and some words…well they deserve the dank of a dark dungeon. I couldn’t say the word ‘vagina,’ until I was in my early-forties—which was another life time ago, because as you know I am effectually 39 forever. And words like fu** and other connotations that suggest what my boys were watching two spiders (likely) do on our window last night (interesting..couldn’t tell if they were eating each other or enjoying themselves) still makes me feel like I am in a library with my hair in a bun wearing a prudish ruffled blouse. Think Mary in the altered life of George Bailey in It’s A Wonderful Life. If you haven’t seen the movie, that really is the hugest mistake in your life. In constructing thoughts I run into constant roadblocks and detours. Case in point, my steering off the road to discuss a movie you should have watched twenty times by now, if you have an ounce of good taste in your bones. See how I judged you? That’s what I do with words. Is this one too provocative? Is this the best word choice? How does that word feel? He feels too fat, too heavy, too mundane, too cliché-like, too over-used, and so on. It’s not about perfection. The process is more akin to picking out the ground I want to walk on. The soles of my feet know that some foundations feel better than others. I mean I’d take clean laminate flooring over ten-year old carpet any day, and I’d much rather risk the residue on green grass then the debris on concrete, while shoeless. And I’ve gone off on tangent again, visualizing all the ways in which my feet can travel, and all the dangers flesh faces.

4. Life is fricken scary! Life doesn’t come with a guidebook or rulebook or anything, and all these grownups are trying to figure out what direction to go, what to say, how to be, what to do, and are pointing fingers this way and that, and sporadically jumping from one idea to the next, clinging to this hope, and then moments or decades later, another hope. And it confuses the heck out of me. Tears me open like an over-exposed vulnerable fish with her guts hanging out and seagulls hankering about for a ripe piece. I know enough to know I know nothing, and to watch all this chaos wobbling about like those weeble-wobble toys that don’t fall down, but get overwhelming annoying in their inability to go anywhere and do anything but remain stagnant, gets to the very bone of me. I feel nibbled upon and broken. I don’t want to be told what to do or how to be, but at the same time I want some almighty guru, higher-power, or at least Mother Nature’s henchman, to come down and point the real way. I am tired of people reinventing the right way and the wrong way, and proclaiming who is good and who is bad, and telling me what I can and cannot do, down to how I parent, who I spend time with, what I spend time doing, and worse what I spend time ingesting spiritually and mentally and physically. In truth, at times, I think humanity has reached an all-time low! I mean people have left the concrete physical examples of how to act and now are needling past the skin of others and dictating, preaching, and insinuating with sour-coated good intentions how people should form thoughts! I mean talk about instilling further fear. Seems like a diabolical plan to me: I know how to really inject terror. Teach people how their thoughts are bad. I mean, it’s not enough to teach them that they are bad, wrong, flawed, broken and in need of repair. Let’s indoctrinate them with how they are innately wired wrong in that their actual thoughts are imperfect! What a grand plan!”

5. I don’t know what I believe in. I just don’t anymore. I have read and processed way too much. As a child I used to pray every-night in an OCD manner: “Dear God, God bless my mom and dad, my cousins and aunts and uncles, my friends, and my enemies, and everyone I can think of. And please include everyone I can’t think of or am not remembering. I love them too, but I can’t remember them, but they are still important. Please include them. And if I am forgetting anyone else, please watch over them. And bless me too, and my animals and all the people I love and know and who love me and who don’t love me and who don’t know me…..” To cover all my bases, I asked Jesus into my heart when I was a young teenager, primarily because I was sleeping with a rosary around my neck with the lights on every night and warding of demons that were haunting me in my sleep. And primarily because life sucked so much in its confusion, unpredictability, and lack of security that I needed the Big Guy to come in and stand at the door to my heart. At least that way, when the aches of the world pounded on me, I had something/someone, imagined or not, to push back. Now, I have taken in so much clutter from the world that I am left confused and spinning. I have a natural instinctual desire to accept everyone and everything, to be open to forgiveness, to believe in others, and to love. So many religions don’t fit me; that is to say, if the religion was a substance it would feel, if ingested, as shards of glass, and, if worn, like an over-sized sixty-pound cloak of fur of which the shepherd of my flock had forgotten to shave. I just don’t know anymore, and strongly think we need an Aspie prophet to develop a new religion, that’s not called a religion, of course. Because religion is one of those words that munches at my eardrums.

6. Everything is alive. Geeze, I am so tired of caring about things. I mean things, literal things. Like when I go to discard of the peel of the potato. Crap, I am thinking, if I put this in the garbage he will likely end up in the landfill. He would much prefer to be in the compost pile where he is then able to turn into something else and nurture my future garden. I wouldn’t want to be in a landfill. You see, I have this natural tendency to apply my own emotions and experience to inanimate objects. And if you think that is bad, I also do this to most people and animals. I assume, from some part of my being (if I be) that others see and experience the world as me, even though I logically know they don’t. I still get caught up in the thoughts that my pain is another’s pain and that my agony is another’s. This adds some huge chains of ultra-super-charged responsibility onto moi! I mean, I hold the responsibility of the world. I am King Kong demolishing cities of insects, grass blades and potential habitats of living creatures when I partake on a stroll. I am a cruel demi-god slicing and dicing vegetables that I now know might have their own semblance of consciousness in the way they move and retreat from danger. I am this judge and controller of destiny: Off to the landfill for you onion skin! The truth is I know this is all nonsense. Until I read spiritual practices or ‘hippy’ life rules that actually reinforce my way of thinking, albeit at a much less complex and less mortifying degree. I know, I need a pill or a stiff drink, or something stiff, (yes, that’s sexual humor that makes me blush, but nonetheless a truism), to distract me from the cavernous rivers forging through my brain. I can see all the NTs out there (Neuro-typicals) shaking their heads and thinking, “Man, she thinks way too much. Just relax and chill.” If only! Like I choose to be this way. Like with my high intelligence I haven’t researched and entertained a thousand-plus techniques and manners in which to stop myself. I can’t help it. There is this black-and-white movie actor in my mind, with a hunchback and greasy black hair and spikey crooked teeth and pale, unattractive skin, (with a large distracting mole), screeching: It’s Alive!

7. I don’t like me, but I love me. Yes, this is a concept similar to when you have a relative you can’t stand to be around, and would never choose as a friend, and wish wasn’t born into your clan, or at the least you weren’t born into the clan, but you have this unfounded instinctual love that keeps pulling you in because she or he (why don’t we have a non-gender word yet?) is your blood. But it’s different, because I would choose me as a friend, and I do like to be around me, and I kind of think I am super cool at times. So that’s not a super good example. But I like it anyhow. A better example might be when you love your dog, but she does stuff that really messes up your sense of serenity; I don’t know, no names given; but let’s say she piddles when she is anxious, or brings in dead surprises through the doggy door, or digs up to find moles and comes in all muddy and tracks footprints through the house, or smells like last-week’s garbage left out in one-hundred degree weather, and you are way too tired and/or preoccupied to want to, yet, again, deal with the fluffy ball of love’s annoyances. That’s more like it—how it feels to live with me—like I am my own best friend who annoys me too no end at times, but at the end of the day is so warm and cuddly and loyal that I can’t help but overlook all the perceived failings and flaws and pain-in-the-butt doings. So really, let’s erase the first sentence of this paragraph, at least from our memories, kind of like our self-worth has been erased from our memories by big-business, and let’s pretend the first sentence reads: I love myself like I love my dog. I like to pretend.

8. I like my inner world more than my outer world. It’s safe in my head, for the most part. Well, not really, especially when I am looping, spinning, panicking, or feel like this time I am REALLY dying. Feel my heartbeat! But still, with all the slippery slopes, it still feels better than what’s outside of me. I don’t like all the judgment out in the world. I don’t like second-guessing; I don’t like first-guessing; or tenth-guessing. I just wish we all wore our hearts, integrity, and love on our sleeves. I wish that our individual attributes and way of being were accepted and that people were loved just for being. I wish that I lived in a forest with elves (nice ones) and fairies (nice ones) and that the whole world was peaceful. But at the same time, I understand the inner-workings of yin and yang and how opposites serve to accentuate the other, so that pleasure is pleasure, and happiness is happiness. I understand that in order to appreciate more of me and more of another, I am molded and chiseled. I understand to walk in this world in gratitude that I had to experience having less. I know these as truisms, at least truisms of this age. And I too know the concept of balance, acceptance, serenity, surrender, faith and trust. It’s just hard. Because so much of what I see is in contradiction to what is spoken and demonstrated in the world. At least in my mind I know what to expect, even if it’s chaos, even if it’s torture, it is predictable pain: not unexpected hurts inflicted on me by a society I have yet to understand. At least in my mind there are moments of intense fantasy that take me to another place, less filled with misfortune and misgivings. At least, inside of me, I can find the perfection, the love, the guidance, and the hope that the world keeps trying to dismiss and/or take away. I like it inside of me, curled up with the warm puppy, despite the smell, the responsibility, the duty. At least inside, the burden of the world isn’t leaning up against me, and I can hear the tender reassurance of a loving heart.

427: Eating Disorders and Females with Aspergers

| Aspergers Girls

Recently there was study released that linked females with Asperger’s Syndrome to eating disorders, specifically anorexia.

The researchers are making conclusions that the eating disorder could be a result of the Aspergerian’s tendency to fixate on one subject or thing; and in the case of anorexia or other eating conditions, this one subject or thing would be food or weight, or a variant of the two. I understand this, and the conclusions makes sense. However, I think there is a lot more to it.

Gathering a selection of females with Aspergers and asking them direct questions and allowing the participants to elaborate on their experience, might deem worthy and productive. There is much to gain in looking at the person who has the condition when searching for answers. But there is far more to gain in talking to the person and asking the female to share. We have a lot to offer. And so many times it is a male without Aspergers, and without an eating disorder, constructing these studies. It seems ridiculous to me. How much better for a female, who understands the gender experience, who is a person with Aspergers, and has an eating disorder, to be the person evaluating and determining results of a study about females with Aspergers and eating disorders. Wouldn’t she be much more able to ask the deeper questions? Much more able to interpret the responses and understand what was happening?

There are layers and layers of complexities that the mainstream evaluator and researcher are going to overlook. Not because they don’t have the wherewithal or wits about them, but because having Aspergers isn’t something you can begin to understand unless you have Aspergers. It’s not like having a mild disease where a section of your body responds differently. Having Aspergers is like having an entirely different system of functioning, processing, viewing, and seeing the world. All the senses are affected. All the ways in which the brain digests information is somewhat skewed—not wrong, or even right, but just different. There really isn’t anything simple about Aspergers and thusly no simple conclusions ought to be reached from any study.

Biologically there are differences from the typical person. We are affected by our guts, our skin, our thoughts, and a lot more. Theories abound about variant enzymes and the like. How we process hormones and chemicals, even how food affects our system is questionable. With so much going on internally beneath the surface that most people cannot figure out or understand, and with so much still unknown, it is impossible to accurately point to a singular cause of any behavior at this point. To conclude an action is based on one aspect of Asperger’s Syndrome is not accurate. The complexity of Aspergers is like a ball of twine. One thread affects the whole. The weight, the design, the outline, the movement, the appearance—each string pulled causes an alternate reaction.

Who is to say that food is not the culprit and that food causes the exact disorder that is being blamed on the Aspergergerian’s tendency for fixation. Perhaps the food itself triggers a chemical reaction in the brain that causes interior upset, either biochemical, physical, or psychological. Case in point being gluten which affects many on the spectrum, causing rapid thoughts, depression, or a false type of high—purely chemical. And if a child were to feel those extremes when eating gluten, then could she not then want to discard of the food, to instinctually force the food out of her.

That is just an example, and by no means suggestive of a theory or even grounds for an eating disorder. It is merely a case in point.

Food definitely affects my health, not by my own doing but from my chemical makeup. Certain foods make me very sick and off center, especially genetically modified foods and products with chemicals, preservatives, and other ‘unnatural’ substances. Certain foods cause inflammation of my body and increase my pain, particularly sugar, dairy products and various white flour products. I bloat up from gluten and sometimes get scary thoughts after eating wheat. Wheat seems to put me in a depressive state quite easily or causes me to over-analyze and loop in thought. I also crave wheat at times and cannot get enough of it.

Often after I eat too much of a food that doesn’t feel good for me, I might spend the next day barely eating. This is a way I cleanse myself and try to purge out the poisons inside of me. I then become fixated.

But not on the food itself or my weight but on the ‘rules of food.’

Everything I have been taught and taken in via reading, word-of-mouth, and documentaries reels through me like an old movie film shooting cross my brain. I have a dictionary of food rules in my head. I know what is bad for me and what is not. The problem is that most of the foods that are available are not good for me. The problem then becomes extreme in my mind. I know the dangers of many foods and I know the aftermath I feel. However I live in a world where to fit in and to do ‘normal’ things, I can’t eat like I think I need to eat: unless I have a lot of money, energy, and time to prep myself healthy meals. In addition, the foods I know are ‘good’ for me, e.g., organic veggies, are often lacking the flavor and texture I have been brought up to believe is best and popular and yummy. Not to mention the food industry that spends billions just to make sure what I am eating (that is bad for me) is addictive, appealing, and leaves me craving more.

There are so many contradictions in food that I become confused. Soy as an example is disputed left and right as a trigger for estrogen. I have terrible endometriosis and PMDD, eating just a bit of soy makes me worry how I have upset my system and what the repercussions might be. Wheat is an obvious trigger, but at times, out with friends or family, the wheat dish is so appealing that I feel I am depriving myself of luxury and joy. It has been engrained and engraved in my head from this society that food is a treat, a well-deserved treat. And my mind plays a ping-pong game of ‘you deserve this’ and ‘you will regret’ this. Yes, I am fixated on the thoughts of what I will eat, but not because I choose food as a fixation but because of the repercussions I often face eating food and of the mixed messages in my mind.

I know the GMO foods are dangerous. I know they are legally registered as poison and not food because of the chemical similar to Roundup, and other disease-like elements, found in the seed of the plant. I know that many a people are having reactions, and many countries are banning the products because of health and farming interests. I know that corn is a main culprit. Thusly I avoid corn. I feel tired and fatigued when I typically eat grains anyhow, kind of a hypoglycemic reaction. So many foods have corn by products, corn syrup being an obvious one. Mexican food, my favorite, is loaded with corn, wheat, and dairy. If I go out to eat my options are so limited, I might get depressed. Or I might just tell myself ‘screw it’ and eat what I want. The next day or two, I pay the price. I am so sensitive that my pain disorders react. I have been diagnoses with hyper-joint-mobility syndrome, fibromyalgia, chronic fatigue, and more. Foods directly affect how I feel.

I might spend all day not eating and just having water and herbal tea. I might not eat until four or five in the afternoon because I know as soon as I eat, I will more likely than not have a reaction. I rarely can eat and not feel heavy, bloated, muscle pain and fatigue. It is easier not to eat. Is this avoidance an eating disorder? Or is this behavior a desperation and a means of trying to avoid pain? If a boy was whipped every time he ate, so he refused to eat until starved, is that a disorder, or is that survival?

Of course, in my mind, at times there seems to be a definite means of controlling an otherwise uncontrollable world through diet and exercise. I know that. When my life is essentially overwhelming, as it feels most days, I might fixate on the scale and my weight. Mostly because the rest of the world is entirely unpredictable, full of treachery, deceit and lies. Yes, there are many, many good people and wonderful things about the world, but there are also the continual reminders of the unpredictability of human nature and the deceit of leaders and government. I internalize deceit at a deep level in which I neither understand the drive to deceive nor the person who deceives. My world is often muddled in the mysteries of people and their ways. And sometimes, a number brings me comfort and peace. A familiarity I can trust and control. Sometimes this number is on the scale.

I have been watching my weight recently, as I gained poundage since stopping a low dose thyroid pill that put me into a hyper-thyroid state (hair fell out, rapid heartbeat, rapid thoughts, insomnia, cystic acne, etc.) The pill wasn’t supposed to affect me that way, supposed to be super safe, and my thyroid numbers never got that low, but my system is so sensitive that anything introduced, particularly a hormone, directly causes extreme side effects. Two days after stopping the pill I returned to normal conditions. During the time I was taking the pill I was getting a sore throat two days before my period for seven months. The sore throat often turned into a cold. I was sick almost every month on the thyroid hormone pill. It altered my progesterone levels that caused a reaction to my tongue and the way I breathed at night, which caused the sore throat, which caused the illness. No doctor could tell me what was going on. I had to research. Was I fixated on that too? Or was I trying to solve a puzzle so I could stop being sick? I don’t know.

I am back to watching my weight, because my thyroid numbers are just on the high-normal range. This increases my pain as well. For some reason being in a slightly hyper-thyroid state decreased my physical pain but triggered a bunch of other intolerable symptoms. Now my pain feels two-fold, as if some days my entire body has been dropped off a building. I ache. I throb. I burn. I tingle. Nothing I can’t tolerate, as I have been enduring pain for thirteen years, but something I still hope to diminish.

Less weight equals less pain for me. But it is impossible to lose weight without drastically reducing my calorie intake. If I drastically reduce my calorie intake in an attempt to lose weight, so I can decrease my pain, is that an eating disorder? If I think about food all day, because so much of it seems poisonous and causes me pain, is that a fixation? Or is that me being cautious and over-aware because I have been hurt so much in the past? Is it desperation? Or is it just the way it is, because I know not what else to do?

With all the chemical imbalances and ‘dangerous’ foods aside, weight itself does bother me. Faces change constantly for me. My body image changes constantly. When I am at a healthy thin weight, I know what to expect. I know I won’t find the imperfections and flaws that my mind so easily sees. I am a detail-hunter. I find the slightest things that are off center or not right in all things I see. Not that I am judging, only that I am carefully observing and figuring out. My mind is constantly solving puzzles. Everything I take in is sifted and categorized and made to fit my past knowing and experience. I see things so intensely and feel things so intensely that any normalcy, anything that stays the same, anything that isn’t a surprise, new, or different, is a haven—an inner sanctuary in where I choose to bask.

When I am skinny and look the same weight everyday then there aren’t a thousand messages in the back of my mind. I don’t have a tape of old messages from everything I have previously taken in and learned. I don’t here all the contradictions in my mind that the world has fed me. All the contradictory studies. All the falsehoods. All the lies.

“Belly fat is good going into menopause to help from getting bone loss. Belly fat indicates higher levels of cancer.”

And I don’t have the complications of getting dressed. When I gain a little weight most clothes don’t fit. I don’t keep ‘fat’ clothes because I clean out my closet regularly and can no longer wear certain clothes for reasons I don’t understand. Sometimes it is a memory the clothes evoke, a texture, the color, the cut, the way the clothes pinch at me, scratch me, pull on me, weigh me down. Maybe I saw someone else wearing the same shirt, and now I can’t wear that shirt because that person’s image is now with me. Maybe the clothes, I think, make me look odd, untidy, sloppy, frumpy, slutty, loose, etc. It is common in my house for me to ask my husband: “Does this look slutty.” I ask because I was judged so much as a teenager by my body and my clothes that I still here the echoes of my peers. I can’t tell what fits right or what looks right. Things shift for me. I usually dressed my babies in clothes too big. Things hung off the shoulders; items didn’t match; patterns clashed. But I honestly couldn’t tell. I don’t understand fashion trends and I don’t follow them. And I don’t understand why people do. So my wardrobe is limited from what I have tossed out because I no longer feel comfortable wearing and from things I can’t get myself to wear a particular day for some reason or another. My wardrobe is limited because I am not able to wear certain items for weeks or months at a time. I get stuck in my head something someone said or something I read or saw. Like when I was watching a movie that had a 1980’s flashback and the females both wore their hair like me. Two different styles, both the way I do up my hair now, in this day and age. I thought hard about how maybe I am not supposed to wear that hair style anymore, particularly as the women were portrayed as backwoods idiots. Same thing goes with clothes. I am constantly matching and connecting points in my head. So if an outfit for some reason doesn’t seem like I should be wearing it, I don’t.

When I add weight to the equation, everything comes out scrambled and even more complicated. I start wearing things I don’t particularly like, only so I can hide the spare tire. I go out in public and am continually worried about the small amount of excess fat showing. Because to me, (I have taught myself through media exposure),fat is bad. Even the tiniest imperfection is terrible. I have been brainwashed into thinking I am not good enough unless I am good enough by the big business standard. I know it’s not true. And so the logical part of me and spiritual part of me start debating everywhere we look. Sensing my own fat causes me to spin into loops about the corruption of America and the terrible untruths women have been fed since birth. I start to look for overweight women and justify how lovely they are, and that if I was a man looking at a beautiful woman that the small bit of fat wouldn’t bother me. And that a face and heart is what matters. And then I spin back to my body. Am I good enough? Am I enough? And then I go back through all the spiritual books I have read, all the mantras, the ‘truths’ I embrace at times. And I get all twisted inside; all because a tiny bit of flab isn’t hidden by my clothes. The same goes for other parts of my body. My own cleavage is a major issue. How much to hide. How much is safe to share. What I know of the stereotypes of men and what cleavage represents. All of it confuses me. All thoughts that mostly go back to social norms and expectations; things that make no sense to me.

If I am stressing about a little fat around my waste and don’t eat a lot the next day, is that a fixation? Or is that me trying to stop the constant bombardment of negative messages that fill me when I am not fulfilling a role that society has indoctrinated upon me? Isn’t it society doing this to me, to us? The poisonous foods? The restrictions on how I should look and be? The mixed messages? Am I not just extremely sensitive to the contradictions of the world?

I haven’t eaten meat or poultry since 1984. I stopped eating lamb at age four and pork at age twelve. The animal cruelty, the suffering, the injustice—I saw that all too, from early on.

I don’t think that eating disorders are necessarily a result of a fixation. I think eating disorders are a result of the unjust and contradictory, money-hungry world we live in. I think eating disorders are an attempt to feel safe in a very unsafe world. A way to make order out of caous and unpredictability.

A way to gain back some of the control that has been taken from us when we were taught to trust liars and schemers and not our true heart and soul. I think eating disorders are a symptom of the world gone wrong and not of my brain gone wrong. Eating disorders aren’t a simple puzzle to solve, especially when considering females with Asperger’s Syndrome. There are so many other factors playing out beneath the surface. So many thoughts and deep complexities that the experts haven’t even begun to discover.

And to claim suddently, “Hey, did you know females with Aspergers are more likely to have eating disorders,” seems oddballishyly peculiar to me. As if we couldn’t have told them that from the start.

(I am not an expert on eating disorders. I have never been diagnosed or sought help for an eating disorder. I share to raise awareness of the complexities of food and weight in females with Asperger’s. I realize there are many types of eating disorders, some much more extreme and serious than my story. This is just one story and does not represent the collective whole. Also the ongoing research by others will help others detect Asperger’s Syndrome in some girls with eating disorders, and that’s good. To find answers.)