My Turn: one readers journey with autism

Jun 26 • Newsroom • 469 Views • Comments Off on My Turn: one readers journey with autism

By Krystel Anderson

I will begin with the depth of honesty, which my dear reader, I hope you are prepared for.

I will describe my experience with a rapid tempo and a slight staccato of unperfected wit and ire. WE are NOTHING alike, and the space you search to bridge the emotional void is conjured up by your hurried expectations of humanness. Is that being you stare into ever going to measure and mimic your form? In this genetic code of mine, the shapes and sounds of this fragile being vibrate as I am consumed by the billions of interactions that crawl slowly across the sky. 

In quick succession like a blistering breath in, shadows of feelings, thoughts and objects collide. I react in ways you want me to because I feel the weight of your dissatisfaction and disappointment. In the corners of intelligence, I learned to be similar to others by calculating emotion systematically—but I feel quite intensely. I untangle it by gutting out pain and isolation on a ritualistic self-imposed tundra. 

I long to be like others, but the teeth of connection often spares me of love and comfort because there will be a time when others recognize I am “too different.” When my attention turns inward because the outside world is too painful, they will be blind and fail at every salvageable vector because they cannot concretely unhinge their animal uniformity. They request to render my emotional marrow through the torso, or by familiar words. 

Incredibly, it is demanded upon us (autistics), to shed the skins of our minds and use systems of human communication that has led our species into the holocausts of suffering. They will reject our minds and forms because they are unaware of the meadows and rivers inside our worlds. In doing so, we are to become like massless creatures crashing on volcanic rocks of stars. 

The world inside an autistic mind is still beautiful, even if it fails to have the mouthpiece of language and the heavy movement of meanings. So we rock, we grasp onto objects with features tangible to our own understanding. 

1980. 

I was born sick. An underweight baby in the south of Germany, I struggled to breathe and could not suck or chew. Unaware to doctors for decades, I had Celiac disease, PICA, a blood disorder and a silent lesion growing in the middle part of my brain. My oddities of speech recognized by my parents, who were distracted by four other children.

I had no awareness that I was different. In my world, letters and numbers wear dresses and speak in defined personalities. Tastes and textures blend into echoes and rhythms of emotions. Colors combine with sounds, and when I am at rest, I experience waves of oceans in the midnight of my eyes. 

1991.

I was diagnosed with depression at the age of 11 and institutionalized. I sought out ways to pretend to be like others—after I understood I was being exiled. Much like William James in his text The Varieties of Religious Experience: “It is a positive and active anguish, a sort of psychical neuralgia wholly unknown to normal life.”

I turned to music and writing. I played the violin, cello, alto clarinet and the piano. I was never classically trained. I would wait until everyone left the house and then I’d composed a unique piece and play it loudly and angrily until I was exhausted. I developed a duality and dissociation between the mental and physical.

I immersed myself in religious writings in order to rationalize suffering. I studied early quantum physics, eastern philosophy and what was the genesis of the field psychoneuroimmunology. I wrote essays to ancient Saints, Clerics and Shamans and historians. I titled a series called Man of Madness where I’d write letters criticizing theories and beliefs. I saw them as heretics and elites selfishly ignorant to the human condition. 

I once wrote a line to Socrates, only a just man knows that pontificating is a luxury but enlightenment is reserved for those who experience legitimate agony. Your tired analysis lacks virtue; therefore you are in the absence of all knowledge. Suffering is the only path to virtue.  Nobody knew the depth of my writing or knowledge because I comprehended early on that people are more concerned with what they believe than what actually what is

My behavior of self countered the comfort of others. I learned being different meant unlovable, so I remained barren and alone in my mind taking on shapes to understand my caretaker’s form. 

1995.

At 15, a torrent of seizures gripped my body. Leaving me with partial right-side paralysis and slurred speech. Each seizure would rip open the protective sphere and spill out the contents of my mind. I learned I could not feel love in ways that others do, and I was losing the characters of knowledge so quickly it felt like I was collapsing within the confines of my body.

Grand mal after grand mal, my body ached for reprieve. The division between the supremely physical and mental drove down the sides of my brain, leaving me with parts of self, disoriented in space and time. My mind began to replace the limbs of body and I lacked the sensation attaching me to this world. The seizures gnawed down my IQ to 88, and I was suffocating where numbers, words, memories and people floated out of reach. The doctors called it Conversion Disorder (a misdiagnosis, but a guess at the time). In layman’s terms, it was described as an inability to deal with stress caused me to psychological convulse. 

Psychotherapy treatment was where I felt truly comfortable in the audience of an intellect, but they were out of their league. I remember analyzing intelligence tests and being so disgusted I gave them an unethical drama of answers which led to a predictable diagnosis. They did however, conduct a battery of tests (that perhaps I was unable to manipulate) and diagnosed me with Autism. 

I never knew about that diagnosis until I was 29, where my parents, who are fiercely religious and ill equipped to discern biological concepts, channeled their fears into denial and pushed me to live a benign and ordinary life. 

2000.

I made it through high school, but missed a year-and-a-half. I was embarrassed there as well, and told I wasn’t allowed to return until my seizures stopped because they were scaring my classmates and teachers. I was given an Individualized Education Plan (IEP) and never managed to stay in the special education room (because I always ran and wandered).

I stopped caring about things I no longer could hear in my private world. I wanted to be a doctor and researcher, but the seizures shut off my access to a tangible repertoire of knowledge. My own intellectual access was cut off, but another world opened up and I started perceiving others in a different light. 

What was left was my speech. I finished my school and ended up getting a degree in Radio Broadcasting. Despite my challenges, I attempted to live independently by working part-time and working myself through school. I kept my mind away from loved ones because I feared the difference would cause a deeper separation. 

2005. 

I was treated for a mistaken hormonal disorder found in the fall of 2002. The silent lesion turned out to be an immune system disorder, causing a cyst to develop in my brain and eventually hemorrhage requiring emergency brain surgery. Currently, the only medication used to reduce the swelling causes hallucinations and suicidal ideation.

I decided against medication, risking growth and a brain bleed. I did this so that I could prove to myself I have the courage to live. I am forced again to choose between the fibers of my brain or the preservation of spirit. I choose spirit, but my body aches to belong here. 

The lesion and inflammation in my hypothalamus is unpredictable, and I live with thought it will bleed out again at any minute. Yet, I hook my hopes on the dutiful ordinary and dream to build a life. I have communicated to those in close relationships my concerns and fears, but it often falls on those unable to comprehend the gravity of such a burden. 

My secret world of fear and despair is often kept from others, and I would maintain relationships with individuals who had no concept of my divisionary world. I had divided my mind and body so that I could survive in the presence of others. I learned to mimic movements so I would be recognized by the human kind. For the most part, I adapted to speak in a smooth or disjointed manner so that the fear of dying would be snuffed out by the sounds of life.

The longing of connection still lingers as I try to live inside the standards of ordinary.

2015. 

Eventually, I made my way through undergraduate school with the weight of student loans, part-time jobs and lost employment due to my health. I rarely had parental emotional or financial support. I fall inside a gray line with any services because I am viewed to be capable.

Living in poverty and food stamps since age of 20, the shame constantly ripping my insides as my upper middle-class family questioned my faith in God. They informed me that my life choices (being gay) was the underlining sin and reason for my illnesses. I forgave them because I knew they were wrestling with ancient concepts. I forgave them because love has no definitions and conditions.

I pressed on with fear, grit and determination and earned degrees in Scientific Communications, Homeland Security and Emergency Management. Nervous about my car making the journey from my home in southeast Portland to Hillsboro, I worry about student loans, I apply to jobs and try to make it all my doctors visits where the always say the same thing. I take a deep a breath on I-84 and sigh, saying “thank you God for all that I have been given,” and I mean it with mind, body and spirit.

I managed to have a few relationships along the way, but they always ended in same fashion: me, a little too different to love, displaced somewhere in the lava of intelligence, left with body burning to survive. 

I have a final request: if you want to know what the autistic world is like, you need not to look into our eyes but gaze upon our hearts. Make that great leap of faith to a world you do not understand because the richness outweighs the difficult journey. We are worth it. 

Krystel Anderson is a Portland advocate and consultant working on opening doors and centering her self-worth on a positive note. She welcomes post cards, letters and even just a nudge of encouragement. She can be reached at kryanderson@gmail.com

 

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