Of She

universe
universe

Of She…
She mounts, as the tuft ribbon, torn
Riding the circumference of questioning
Mind turned, trembled-wavers
Across endless cause
I cannot, I can, I will, I shan’t
And over the mountain terrains
She treks
Feet, aching soles
Upon beaten battleground
Heart opening to the chasm of reason
She is, and she is not
Twisted and reborn into
This something new and un-new
Opened and closed
Reexamined and brought into the light
Distraught and brilliantly aware
Carrying the global basket, woes
Torrid tears racing down bones
Outlining, this shadowed-speaker
Born into prism
Walls, resurfaced and reshaped
Made into what almost is
Until fleeting moments weep away
Left idling, still,
In creviced thoughts
Of what has come
Fragmented semblance
Slivered whispers
Claimed identity
The torrential gathering
Of she
~ Sam, 7/25/15

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542: Self

self
self

I know what I am not but not what I am. I know when to stop but not when to stop starting. I can inch my way into the middle and get stuck in the molasses of neither here nor there. I don’t know how to swim upstream without pounding pain, and instead, in alternate route, float downstream away from the waters where all else abounds.

Somewhere I have forgotten myself, and I search to find her, thinking I have arrived, only to once more find I am at the backdoor looking into what was and thinking I had known then.

I cannot remember who or where I have been, anymore than I can visualize where I am going. I am lost, in a time maze of confusion, falling upon a self I cannot fathom or detect.

She is there, in the shadowed-tunnel, collapsing and reborn into another, faster than humanly feasible. She is multitudes unopened and reopened—an anomaly in form. To be and not to be. To care and not to care. To unravel into the very depths of reason and peer down into the pond of ‘me.’ Only to question what it is that stares back with such disregard and wonderment.

I am but enough and then I am unequivocally lacking, never measuring up to the enforced standards absorbed from the path I walk. I clamor for explanation and find a thousand books untouched, though in some fashion taken into the realm of reason. I can feel the words: the spoken, the whispered, the silenced, the ones that never came and ones that never speared the element that is I.

They make me. They form me. They penetrate me into something I know not. Clay to my mind. Dirt to my heart. Scattered residue of earthly wants and needs. Goods that I am neither capable of grasping or acquiring.

I am this existence that the observer watches. Reformed with the passerby. Morphed into their reality and then left, unscattered and splattered, broken and unbroken, in a pool of endless duality.

I am what I am—yet only for a fleeting moment; a chance to take glance towards the outline of my palm, the beat of my heart, the opening of a billion universes. Everywhere I am, and at once I am alone. Isolated. A loneliness no less easy to explain than the essence of what I have become. ~ Sam, 7/24/15

What Does Aspergers Mean to You?

I asked some online community members what Aspergers meant to them. These are some of the responses. (Apologies if there are repetitions or if I forgot anyone.)

What Does Aspergers Mean to You?

Alexandra – I have Asperger’s. No, it’s more than that: it’s not just an attribute, it’s something that is so intrinsic to who I am. It colors my perception and shapes how I interact with the world. My mind is the core of my being, and Asperger’s is the core of my mind.

My son, mother, sisters and I have Aspergers. It’s been so very tough not knowing why I was different all these years. It was isolating and confusing. I ended up hating myself for many years, but after my son’s diagnosis we all had a light bulb moment for ourselves too. I will not speak of what it meant before I learned to love myself. I will share what Aspergers means to me now. It is wonderful. I have figured out what to do to prevent meltdowns and face everything that comes my way. I rejoice in my ASD. I have perceptions that no one around me does. E.g. I see music not just hear it. I cannot find words but I can write everything in music. My piano solos say so much more than words can. Everyone who hears my compositions has quite the experience. I like to take people to places they forget exist in them or don’t know exist. People say that they visibly see life stories unfold before their eyes and they connect. I still find immense joy in watching ants work. I feel the life of the planet and even inanimate objects because they deserve thanks for providing us with a purpose. They are a part of us. I don’t miss things that most do. I have life buzzing inside of me that most forget as they become adults. I love sharing this with others and being wakened together.

I am on the spectrum and so is my daughter. I never knew until my daughter’s diagnosis when I was in my late 30’s. Ever since I found out my life has changed for the better! To me Asperger’s means that I am not alone anymore. I can better understand myself and others. This gives me confidence–confidence I never had before by knowing how far I’ve gone. It takes strength to live in this bright, chaotic, illogical and very loud world. I remember this when challenges arise.

My daughter has been diagnosed and I am certain that I would be under the right conditions. The root of what it means to me… a completely different viewpoint from the outspoken rule of normal! Wonderful insight and different angle on solutions to situations.

Kylee – I learnt a long time ago a child I was in contact with. also my mum was doing some training and recognised myself in some of the traits. it just means I’m different but I try to not let it affect my life.

My name is Stefani. I have Asperger…To me it means I’m capable of great things, but it takes me a long time. It means that even if I’m 31, I feel like a 14 years old. It’s means that life around me doesn’t go the same speed as life inside of me. It means that I will never truly understand what’s going on but I always be amazed by the smallest of thing.

My name is Beni. Diagnosed AS as a mature woman. I don’t relate specifically to the label of Aspergers and don’t think it’s a disorder, but identify as autistic for several reasons. The diagnosis has been liberating. It means I am the way I’m supposed to be – not “wrong” or broken somehow. Just different, and I’m very much okay with that. It also means that I’m not alone as I felt all my life until understanding why I’m different and how many other people are similar to me. Still have problems, but I deal better understanding why.

Jon, have ASD. Asperger’s to me is the albino of the human race…I may think I’m normal, until people kick me out of the herd because something is ‘off’ and they can’t pinpoint it. It is knowing that the people around me are instinctively thrown off by my sheer presence, regardless if they’re aware of it or not.

Mike, have Asperger’s. To me is like that old awkward friend that never leaves me alone, and I have to be very careful kind and cheering with him, otherwise he starts to screw me over and he wont stop until I put attention to him. The diagnosis was liberating and helped me to understand and know a lot about myself, weird things on my behavior and difficulties that I presented along the way started to make sense for me. Still struggling, I’m not on the sunny side yet, but every day I get closer to clarity, peace and direction in my life.

Jo. I have an autistic child but run a group for children with disabilities so have lots of children with,asc,aspergers etc,aspergers means to me clever people with an eye for detail they can be very funny and dry witted people some of the most loveliest people I know xx

My name is Ines. I am a self-diagnosed aspie. To me, AS means self-acceptance and understanding. Before I knew about AS I didn’t comprehend my life, I thought I was crazy, weird and not worth it. Now I know why I’m different, and I’m learning to be less hard on myself. I have a love-hate relationship with my AS: most of the time I’m proud of the unique characteristics it gives me, other times it’s hard to put up with the challenges it brings. The best part is when you can name something that something automatically starts being less scary. smile emoticon

To me Aspergers tells me that I am my son’s mother. If it were not for his autism diagnosis, I would never have come across Aspergers. My son has helped me to understand who I was, and in effect, helped me understand how to support better him too!

Sometimes, my late diagnosis makes me feel alone, as I am still trying to find out, after so many years of trying to fit in, who I really am. I have lows and highs. My highs help me feel unashamed of my past self- something I always felt. Now I know the reasons behind many of the difficulties I have experienced, I no longer feel so bad. My lows lay in the fact that I have lost a sense of who I always was, and am trying hard to find that person again, in a mass of overwhelming experiences that I cannot yet understand properly. I want to find that person in whole, and feel unashamed of that person. The late diagnosis has been a difficult thing, but I am still glad that I have it, and I think my son came along as a messenger almost, and not just for me, but also so that I could nurture him too. Quite a beautiful symbiosis.

Lennée- self- aspergers is superpowers. Overstimulation is kryptonite. There is no way this is my home planet.

Kate. Have ASD. Unable to KEEP friends that I can be myself around and feel happy with. If I meet someone I admire who tolerates my quirky traits and accepts me the way I am, even after they really get to know me, I smother the relationship. I’m so happy to connect with someone I find interesting, but I suppose I ultimately destroy it with obsession. It’s lonely and sad. But I feel I have gifts that other people don’t have.
I just have to find other ways to connect with people enough that satisfies that desire to know someone intimately without the obsessed part. Just sharing myself with someone else who reciprocates and finds me equally interesting. Relationships are a struggle. If I’m not practically obsessed, then I’m often not interested. I feel I either get bored easily, or I become emotionally dependent. I don’t know how to have a “normal” friendship. It’s really bad when I’ve been rejected by someone I desperately wanted to be friends with. I struggle to even talk to someone whom I desire acceptance. I have a great fear of rejection by someone I care about to the point that it is debilitating.
Relationships are just one aspect! I could go on.

It’s something that makes a person’s mind operate on a different level, oftentimes beyond what others can. It’s also something that other people don’t care to tap into or allow to reach its full potential

Asperger, well it means joy relief frustration wisdom and understanding of how my brain and mind works…sadness because of the way dad tried to cure me by military discipline and domestic violence and abuse of mom my sisters and me because we were all destroying his image in the society of the 60,s and the 70,s.His standing as a free mason and at the golf club and the church as a church leader It caused me so much pain and damage and hurt and loss of self-esteem and being brutalized .I am amazed how I survived with suicide and ultimate goal of leaving the house getting into uni and getting a really good job I spent years being isolated and shunned and mocked behind my back because of my idiosyncratic behavior as an Asperger .Then I got married twice why do people want to marry a damaged person is it to domineer or is to manipulate and con and commit fraud against .Now its a joy I have met really wonderful friends and so wonderful people I am learning on the run how Asperger function by trial and error and coming unstuck and causing hurt unintentionally I TRULY WISH NOW THAT WE ARE RECOGNIZED FOR WHO WE ARE OUR UNIQUENESS AND IN PARTICULAR THAT ALL THE WOMEN AND GIRLS ARE ALSO GIVEN THE SAME CHANCE AND RECOGNISED NOT TREATED SO BADLY AND SHABBILY.

Hubby loves me for me

Sam. Aspie super-hero. For me, at this moment, it means extreme pain and isolation. But in another moment, it will mean extreme joy and connection. I am waiting for that other moment…often.

Liz. ASD dx’d and ASD parent. Frustrating, debilitating, self-consciousness and fear.

Rick (have ASD): To me, it means understanding my own nature for the first time in nearly four decades of life. It means not punishing myself for my differences and eventually coming to accept them for what they are: gifts.

Amanda – I have Asperger’s and am a single mother to an adult son who has Asperger’s who still lives with me as I am his only support (emotional and otherwise) – Hell…

Sherry. I’m me.

Aspergers means social mysteries, heightened empathy and honesty to a fault to me – Anne with aspergers and parenting aspergers

Gail, don’t know but…honest

Chris(have ASD) it means living in this world but not always being a part of it.

I asked my son, Matthew (9 yrs old with AS) “Well, I am sensitive to a lot of things. There are certain things I like a whole lot that most people don’t like that much. Oh, I’m smarter than most people!”

Carrie (ASD) Translating the world in vivid empathetic color.

My name is LeslieAnn and I have Aspergers. It’s a family trait affecting my father, my sister, a grandmother, cousins… For me being a an aspie means that I see/ experience the world through a different lens- think “macro” or “bug eye”- than NT’s. I process what I experience differently: I equate it to cultural differences between immigrants.

Great joy and fulfillment and never-ending wonders!

Krista – for me Asd Means 100’s of things, (oh man) it means My 15 yr old Autistic Son and I have always had a beautiful understanding of one another. It means New Beginnings, knowing I’m FINALLY I’m NOT alone because I’ve finally met so many wonderful adults like myself! It means, YES I CAN do things that I’m NOT dumb and that I can learn and STILL learn at 40!! That it’s OK to be ME, to stand up for myself, to say NO! It means Finally having an understanding of all the unanswered questions, that all the Snide comments, laughs, and ongoing ridicule were due to cruelty of a world that did not understand ME, and not always the other way around. A society that was mired scared than anything of differences that could rock the boat or take away forming little identical robots or individual Uniqueness’s. It means that I Krista, am going to be OK!! That I CAN now conquer many fears, YES I ALWAYS WAS and AM intelligent, but when I learn, I just need a visuals. It means That I am extremely sensitive to noises, sounds, tastes and touches, that these were NEVER my fault and that I can NOW use tools and accommodate for these things so that I can “HELP” myself because I now have a great understanding of ME!! It means Im actually learning to Love who I am for the first time in 40 years!! This is all due to my son, my little Miracle Man.

Serena. Aspergers, is a parent to Aspergers and friends Aspergers. What ever it is, it is always mixed with individual personality and a unique body therefore it’s different in each and every one of us. Now I’ve got that out-of-the-way I can say it means we are the round pegs in the square holes , the spanners in the works , your guide when your down the rabbit hole , it means we stand out and like to stay in , the force is strong in these ones , given love , support and the correct environment will transform the world into a better place (just the same as anyone at full potential) , a label that has helped me find my people ( and you know what that means – everything) , eccentric , eclectic , empath, I’m certain it means seriously funny , brilliant , weird and wonderful. There is more but I have run out of time. It means quite a lot doesn’t it.

Adrienne, parent of two ASD teens, to me it means my kids think outside of the box without all the inhibitors…kind of like how children are pure before society ruins them. Totally positive for us!

For my daughter… She’s bright, intelligent, but so socially awkward. I feel sometimes that there is a fog in her brain that just needs to lift so she sees the light…

Self (and I know this may be a little difficult to grasp – but please bear with me) Aspergers as I have come to learn and live with it… is a title given to us by someone who wants to pull out the gifted children of the God/Light from the others. A mark; a word used to initially oppress and hold down w/ deems of mental illnesses when really – most of us just aren’t crazy enough for this world. For if it were a mental illness – like many others – there would be a pill to stabilize it. Just as there are pills for some of the symptoms – but we know, many NT’s have depression and anxiety. Psychics don’t have pills, animals don’t have pills to control their in-tune senses. To me – Aspergers is the word we have adopted from those who label to help us locate each others…It doesn’t define us other than in some half right medical Manual or record. We go crazy trying to find ourselves find a label to explain it then realize that it was okay to be us in the first place. Hope that makes sense…

Sariah. Asperger’s means I’m unique, I see the world differently than most people do, my strengths and weaknesses are not predictable, and even though I have trouble figuring out some simple things, it also allows me to figure out some complex things that others can’t.

Hi! I’m Alyce. Since I discovered that I am Aspie, my life has made sense. I am not the oddball in my friendship groups of fellow Aspies! What a feeling to not be judged, to be able to speak my reality and be understood instead of laughed at! Being Aspie amongst Aspies to me means my feet are finally grounded.

Sarah. I’m an Autistic parent of Autistic kids. Aspergers is a way of life. It is part of my everyday experience and I wouldn’t be me without it.

Johanna. I have not been diagnosed, but am very certain that I have Asperger’s. To me Asperger’s means being caught inside a bubble, looking out at the world, being an eternal spectator without a chance to ever participate. Like being an alien on a strange planet where everyone looks like me, speaks like me and acts like me but I just cannot connect. Like standing on the other side of an abyss with a bridge that only other people can cross, but not me.

Cynthia: Asperger helps me to control my bipolarity because I am tending to be over rational thanks to that. For example, when I am doing shopping and beginning to spend a lot, a part of me says: “Stop that’s enough!” and during meltdowns, it is the same thing even it is quite hard. It is like weather: sometimes it’s too sunny, then it’s too rainy and Asperger is here to regulate the changes of mood. The empathy is cool also because I understand people better even if I think their emotions are mine often and that is difficult to handle sometimes (and up or down episodes follow). After, I have the habit to not define myself through my disabilities; I am simply myself, a unique human being in a collective society.

Darci .diagnosed 10 years ago as an adult, spouse diagnosed as an adult somewhat recently. Aspergers means answers to a lot of questions for myself, and exoneration of myself. I am happy I am different and myself even if it means parts of my life are incredibly difficult.

Eva…I am undiagnosed I think in pictures and colours and makes for an interesting time depending on which subject we are discussing smile emoticon…my son of 15 is ASD..it means i spend each day worried i may fail my son in his needs and wants for his world…sometimes we can be over consumed when our paths cross and when our expectations clash….other times the house is a joy, full of laughter and comfort and love. each day brings new smiles and sometimes tears….and i wouldnt change a thing!!

Laura, I am autistic, so is my daughter my mum & my sister. To me it means being different but not being less. It means my Windows into the world are very different & so I see things in a different way & I value that highly. It means a lot of people don’t understand me or accept me which can be isolating.I like being autistic it gives me gifts, it gives me my hyper focus & passion for subjects which always helps me through dark times. I always feel sorry for people who don’t have passion for something.

Sue. I’m an Aspie. It means appreciating the fine details in life. An affinity for gadgets and a gift for figuring out how hey work just by taking them into my own hands. Honesty. Loyalty. Taking things at face value. Seeing things in black and white, but at the same time, through rose-colored glasses. An eternal childhood wink emoticon

Asperger’s is a big part of what makes me ME!

John. Autistic’s Father, Autistic. For me it means I am different, and then some on top of that, lol, and I have a name for it, unlike so many in this world – a reason for focus, for depth, for fascination, a reason for everything from my different way of being, to living even. I love being autistic, which is such a major part of who I am.

Lesley. I am Aspie. To me it means having a unique view of the world but being feared for it. Still I wouldn’t be me if I didn’t have it.

Michelle… My daughter is an Aspie! She is awesome! I’m not biased she is genuinely cool!

Arlene , could be diagnosed with it but am not. My daughter has it… To me it’s not an identity. It’s a checklist of things that have made life really hard for me but I have overcome and have been better equipped to help my daughters one an aspie the other full on autism. I do not believe having aspergers is something to be proud of but not to be ashamed of either. It just is BUT If I have it… It doesn’t own me. I am me with or without it.

My son and I have ASD…it means no matter what life throws at us we don’t ‘live’ in the same world as everyone around us. This is mostly good and highly amusing. I agree with so many answers tho; it just shows how we are all connected. Like our own ASD tribe, so much to relate to.

I’m Samantha, nickname Amma (because I wouldn’t go by Sam and Mama always said I have to be different). I started learning about the Spectrum 3 1/2 yrs ago when my youngest child was diagnosed. I read everything I could find, sometimes from sunset to sunrise. One of the sites I found is Sam’s blog. I still remember the moment — I’d read for hours on her site – and I sat back stunned. I’d found another human with a mind so similar in process that it was as if I read my own thoughts. I haven’t gone for a diagnosis but by joining this community, I’ve met wonderful people and friends. What it means to me to identify with this label — and these are my observations and opinion — is that we are all gifted with a neurological system that is evolved and surpasses anything humanity has ever seen. We have senses activated beyond the standard 5 we are taught about, and we have abilities to learn, grow, build, create, help and heal other people in ways we’re learning together. What I love most about my Spectrum friends (and yes, I do see it in my family now also) is how funny everyone is. I was always told I have an odd sense of humor yet I laugh with some of you often these days grin emoticon I’m thankful for this gift and thankful for the learning I’ve gained in this community to see it as a gift rather than a disorder. We’re blessed.

My name is Kelly. I am 55 years old this year and am self-diagnosed with Aspergers. To me, Aspergers means freedom. I like being an unusual woman, and I am finally free to be unusual me. Now, I know why I do things the way I do them, and I like it. Freedom! Freedom! Freedom!

Karen, have ASD. I am 55 and was diagnosed a 51. I always knew I was different, but didn’t understand why. I felt unlike other people from the time I was in preschool. My diagnosis has brought me relief and understanding. I no longer feel that i’m “wrong” or “broken”. I am now free to be who I was born to be without guilt or regret. And it comforts me to know that I have a communitiy of other people on the spectrum who experience life in much the same way as I do.

Patricia. I am an undiagnosed aspi, and I can trace the aspi traits back through both sides of my family. To me it means being aware of the duality of being me, of seeing everything going on around me at the same time as being unaware of subtleties in human behaviour. It means loving my kids so much it hurts, but on the outside people see me as a distant Mom. It means having to always be “on”, of always checking my behaviour and trying to appear normal. I wouldn’t change it for anything, but I wish I didn’t have to struggle so hard.

Lisa. l have Aspergers. It means a reason to be different, and a reason to be kind to myself – to let myself search until l find the place l am happy and what and who are good for me. lt means soft sweet-smelling skin and touching rocks and growing flowers and remembering my teddy bear and hugs. lt means sewing and drawing and looking for connections. lt means solitude and sanctuary, aromas and music. X

It means never going out in public without buckling on my prosthetic personality. It means constantly being reminded that things that literally jump out at me are not even noticed by other people. It means being wound up with tension as I scrutinize every clue as to how people are reacting to me, and wincing with expectation of being misunderstood and offending someone. It means being a connoisseur of smells, a specialist in textures, a critic of movie minutiae, a noticer of tiny trivia, and a dangerously curious investigator of oddities.

Emily. I’m a parent of an ASD teen girl. Also suspect in myself but only dx ADD. For us ASD means intensity of focus at times. Other times total inertia. Musically gifted, creative. Longing for connection. Desperate attempts at fitting in. Driving people away but never sure why. Deep, existential thoughts… Longing for simplicity, escape from movement, noise, smells. Needing to wrap up in a fuzzy blanket of solitude, way more often than is considered acceptable by most. Feeling separate, always standing outside the window looking in. Feeling fragile, but knowing there is an inner strength to forge ahead, and keep trying.

Kirsti. Aspie. Diagnosed 14 months ago. Misdiagnosed and heavily medicated for 20 years so I never had the chance to learn how to live with it, so now that the meltdowns are happening in extreme ways and the anxiety is beyond a level I can control, it’s horrifying and I am considering a return to “Zombie Land” even though the side effects were so heinous. Just so I don’t have to feel this anymore. Sorry. I wish I could be more positive about this awakening.

Karina. I have aspergers. To me it means high anxiety, which can be debilitating.

Asperger’s, for me, is like a different operations system in a computer. Most use Microsoft Windows, but some us use LINUX.
It’s different and sometimes more efficient and sometimes more laborious. The two systems, with some effort, CAN work together. The data must often times, be rearranged (formatted differently).
This should be one of our cooperative goals).

Jennifer, just beginning the process of being assessed, mom of three aspie kids. To me, Aspergers is like a secret golden key that unlocks the door to a huge trove of information I’ve been desperate to find. I feel like I’ve just been given a temporary membership pass (pending proper approval) to an exclusive club whose qualifications I find I am uniquely qualified.

Mitzi. My son has ASD. I’m still learning but to me it makes him unique and I really learn a lot from him by how he views the world. He makes me “smell the roses along the way.”

Cyle. I was diagnosed with aspergers in adulthood
For me, it’s jus like any of your friends, families or loved ones quirks, maybe more numerous. It means standing out at times as different, quirky, somewhat animalistic and while loved ones seem to grow attached and appreciate this, acquaintances and less close friends judge and assume. I am both talked and treated down to, and looked up to and admired depending on who I am with and where. It is a big part of who I am but not a label I wear on my shoulder. It is a difference I am proud of for all the trouble it has caused me and I believe that is mostly due to the few that have learned to love me even more because of, and not despite it.

Finding out about Asperger Syndrome was like finding the Hayne’s Manual for my life. It explained so much about me and what I lived.

539: I Am Too

I am Too
Sensitive
Honest
Emotional
Silly
Sad
Excited
Despondent
Straight Forward
Detailed
I am Too
Affected
Exaggerated
Off Center
Realistic
Hopeful
Critical
Logical
Worried
Frazzled
Careful
I am Too
Serious
Anxious
Self-focused
Self-involved
Introspective
Deep
Frank
Different
Obsessive
I am Too
Open
Transparent
Real
Intense
Forgiving
Helpful
Giving
Understanding
Trusting
I am Too
Confused
Overwhelmed
Naïve
Nervous
Stuck
Controlling
Impatient
Impulsive
Invasive
Needy
Clingy
I am Too
Talkative
Hyper
Sick
Tired
Attached
Aloof
In hiding
I am Too
Quiet
Distant
Inside my head
Contemplative
Analytical
Repetitive
Cyclic
Fearful
Determined
Pattern-seeking
I am Too
Hard on myself
Mean to myself
Unforgiving of myself
Self-punishing
Self-loathing
Pretending
Aching
Hurting
Wishing
Feeling
Isolated
Terrified
Reaching
Wanting
Dying Inside
I am Too

538: Assumption Junction… the truth of my Aspie words

People who don’t know me well, and some who do, sometimes jump to conclusions and assume things about my intention and motivation behind my writing that aren’t necessarily true. I write to write. It’s largely a processing mechanism.

The problem is that who ever is reading my words will interpret said writing based on his or her own opinions and prior knowledge. In other words, if someone is naturally confrontational then the chances of this same person thinking I am being confrontational in my writing is high. Or the opposite might be true, where a confrontational person might make a judgment call that I am weak because I am not displaying a countering personality. Wherein I might be explaining something for a thousand different strands of reasons, all of which pop in and out of my head through the process of scribing, he or she will make an abrupt conclusion about my intentions that includes perhaps two or three primary reasons (again, based on his or her experience). The worst part of it is when this said party then turns and suggests he/she knows what I was trying to say and why I was trying to say it. When truth be told, I have already played over in my busy mind a hundred times why I said what I said, how I said it, and why I said it.

People don’t often know how long I take to write a response. When I am dealing with an out-of-my-comfort-zone response to someone, for example via email or instant messaging to someone who I do not have a close relationship with about a subject I deem important, I take a very long time to write, upwards to an hour for revisions, rewriting, rewording, reworking, and rereading. I stim through the editing process itself to calm my anxiety over the situation. If I am triggered, particularly by what I interpret as an injustice towards another, it takes me even more time to write. What is difficult then is when I am accused by another to have written something in haste, without thought, at length, or without consideration to the audience or the communication rules of some company or organization. It is hard to digest this type of assumption because nothing is further from the truth. The receiver does not understand that I have painstakingly relived scenario after scenario of possible outcomes of how my words might be interpreted. That I have tried my hardest to follow any rules of communication. That I have pushed myself to shorten all I want and feel the need to say. That I have left out more than 75% of what is really on my mind, and sometimes much more than that.

In example of the revision process, I will write a sentence and then imagine the person/audience reading my words. I then evaluate their potential reaction and adjust in hopes of causing the least amount of miscommunication. It’s not about people-pleasing or avoiding conflict, it’s more so conveying my truth as I see it in the most gentle and kind way (and rule-following way) as possible. To do this I switch around words, I alter adjectives, I choose new phrases, and I clarify repeatedly through transposing my words and readjusting. A draft will be rewritten more times than I can count, and large sections deleted, redone, and deleted again. It never seems to be right enough. Not in a perfectionist way, but in a ‘this is my heart’ way.

I discern ahead of time feasible misgivings or upset on the upcoming reader’s part. This process is exhausting at all levels and causes physical and emotional pain. The most troublesome hurt follows if and when the intended recipient responds in one of the many non-constructive ways I had foreseen him/her responding, and then I see all my efforts were for naught.

People think that the length of my writing equates debate, that length = ego, that length = confusion, that length = selfishness, that length = not caring about the recipient, that length = non-professionalism, etc. etc. I don’t write at length to get my point across or to prove something. Once again, I write to clarify my inner workings and to let the person know my intentions fully. If a part of information isn’t shared that I believe at the time is a pertinent piece of the subject at hand I feel as if I am being deceitful, even as I logically know that by definition I am not. No amount of reasoning fixes this.

I over explain myself in written word as much as I do in spoken word. Particularly when emotionally triggered. And such triggers can come from a variety of sources, especially from others’ behaviors that are not privy to the autistic experience. With all my spiritual studies and practices, a part of me would like to say I am ‘above/ being triggered, but that’s hogwash. I am neurologically wired to be more prone to fight-or-flight responses. (And in my case biologically/physically wired that way, as well.) So, I accept that I get triggered.

It is cumbersome and downright dangerous for me to write (without a lot of editing) after I have been triggered. I cannot help but let some of the emotional upset leak through. As much as I try to pamper and sugar coat the words, this ache of being triggered comes out. And then, even with careful revision, the trigger leaks through. In response, I am evaluated based on the characteristics of my writing. I am labeled emotional, reactive, too concerned, too sensitive, etc. This adds to the initial trigger, and to the continual compounded feelings of being misunderstood and misinterpreted throughout my life. Thus is the prospect of such an invisible disability when held by a person that primarily seems to function at a high-level of ‘normalcy.’

People with autism usually get me. And I in turn get them. I am the first to smile when someone sends me a very long online message. Usually the person is apologizing ahead of time for what they label a ‘rambling.’ And usually I am skimming some of it and finding the golden nuggets of what was written. I get it. I am the same way. I am going on and on about a particular subject whilst at the same time stepping back and observing myself and thinking: Why am I doing this? Sorry! Still, I do it. I process and I stim through words.

I can go through periods of purposeful semi-muteness, wherein I try not to talk at length to anyone. I am mad at myself and the world at that point. And don’t think I can function unless I change who I am, at least outwardly. Usually this state by nature turns me into some type of hermit, where I am only talking to maybe one person I know. It’s the way I retreat and I guess hide from the world. When I have had enough of me and I believe the world has had enough of me, I burrow like a wounded animal licking my wounds and punishing myself for having any form of self-pity and the brain I do. Not long after I come out of it and I am a babbling brook once again.

People who are wired like me understand. They know the ebb and flow of being this self. They know that even we get tired of the non-stop jabber and thoughts and processing. And they, for the most part, accept me unconditionally, with so-called flaws and all. It’s the others that just don’t get it whom I have a difficult time repeatedly associating with.

It’s like this, supposing I am blind: I am blind. I need a different form of communication format to write to you. It’s not typical. It’s not traditional. And it’s accepted. After all you can SEE I am blind.

And then it’s like this: I have autism. I need a different form of communication format to write to you. It’s not typical. It’s not traditional. And it’s not accepted. After all you can’t SEE my disability and I should be able to change. I can adjust. I can conform. I can just communicate like you do. Follow the rules and protocol. And if I cannot then I must be inconsiderate, impossible to train, or stubborn.

But it’s not that way. It’s just not. I cannot adapt without modifications and understanding anymore than the person with a visible disability can. If I was an amputee I wouldn’t be able to grow legs. If I was permanently deaf, my speech would be affected. If I have autism, my brain is different. It doesn’t just change based on suggestion. It’s an impossibility.

Sam’s book Everyday Aspergers is now available internationally on Amazon.

More information can be found at her company: myspectrumsuite.com