With every autistic nonverbal communicator who uses words to communicate rather than the silly pictures forced on them in life skills, comes a keyboard. Is a simple keyboard just letters in a pattern? For kept-silent mutants of autism, it is quietly the slender screen to freedom. Told we possessed minds of little children and would never learn, imprisoned in life skills plodding through boring letters year after loathing year, told we are special just to keep politeness in play, letters on the keyboard powerfully represent pitiful juvenile images and the splendor of all thinking pandemic to rational and irrational thought. Where is the kept secret magic behind the keyboard? It is in the magic of communication.
Rating powerful communication with pointing out what letters and what sounds kept working most evenings within our silence, autistic nonverbals learn to read between the ages of three and five. Like sponges of knowledge, we then begin to learn the concepts and words in whatever books are near us. Really, the letters represent more than a way to fit in. They are our only way to be known within our worlds as legitimate thinkers. With sad, confusing difficulties to manage our bodies to obey and our quiet challenges of social freedom created by personally titled lords of the disabled who run our schools and least capable analytic, sloppy processes for history to choose losers and winners in political life, the keyboard is our sword and shield.
When some quiet typers share with us about when and where powerful communication came to them, we witness a bond almost no one can imagine. “I would love to be seen as smart because then other autistic students may get what I have lacked,” volunteers Noel Doog, a 15 year old in Evansville public schools. Noel is skinny. He looks small but is strong and filled with jokes despite struggles with his body. He taught himself to read when he was four, was determined incapable of learning by his school at age 5, and has been in life skills ever since. When asked to tell me a funny story from life skills, he gets emotional and types, “life skills isn’t funny.” Keny Solares immediately picks up the energy, “I want so much for people to accept me as smart and not dumb.” Keny hopes to be “a medical doctor for kids,” has been in life skills in Speedway Schools, and only began to type at age 13 in the last few months. Keny types that he was determined incompetent by his teachers and aides at school because of behaviors and inability to respond to verbal tests. He types:
I love people and don’t want any child to feel bad about themselves, even those who have challenges. I want all kids to have education but not life skills education. I think all kids should be taught together in general education. Both learn best that way. You are not connected (with the segregation of life skills) (Solares)
Wyatt, from Lawrence North High School, types, “The doctor told mom, with me in the room like I was invisible” that I was incapable of learning. … Of course, I want everyone to know how smart I am. They would treat me like a normal person, but they treat me different. I really have a very kind heart and care deeply for all people” (Eastwick). Wyatt intuitively knows a lot from the tone of each person’s voice. He dreams of being a neurologist.
Maddie, age 18, is smart, serious and alert, with brown hair tousled in pretty tresses to her shoulders. She was determined incompetent in an ABA center. She tells us, “I want everyone to know that just because I can‘t talk doesn’t mean I can’t think or learn difficult things” (Merrill). She thinks she can make the biggest difference working with her dad, a police officer. Together they teach many other officers around the state about autism and the competent person behind it who just can’t get their body to work and has deep stress issues.
As you listen to your new friends, you feel emotions ten times stronger than you did before your came into the autistic experience. Sadness feels like a waterfall of grief. Anger is like a volcano of righteousness.
Josh Berkau, age 19, from Warrick County Schools, deals with seizures nearly every day, sometimes very severely. He taught himself to read when he was 3, was determined incompetent in school at age 5, and learned to type 3 years ago.
After a decade in life skills, only extraordinary financial help from family that places him in one of only a handful of non-ABA, communication-oriented schools is saving him from everyone else’s experience. All in this group except for Josh remain in life skills, with no opportunity yet to earn a Core 40 diploma. Josh has a strong faith, and shares “bearing a cross of illness” as the way he preaches. He tells us, “help others when you can and assume competence” (Berkau). By this, we remember the ten thousands and hundreds of thousands like us who are still considered incompetent by everyone in their lives and have no outlet for communication.
We are aware that mating with silence was something we all knew. From our diagnoses of incompetence between ages 2 and 5, and the years before we discovered how to communicate with typing, we were each alone in our worlds, experiencing total, cold isolation, surrounded by conversations that we were broken and even at fault, of our incompetence and difference from the humanity around us, or our invisibility as none spoke to us and all spoke about us. Many of our teachers still do that today. They take advantage of our weak position, not realizing that we are almost certainly far smarter than they, and remember and understand everything.
When the opportunity to connect with words came, we each joyously jumped on the opportunity to sacrifice our virginity as communicators for the pleasure of being known.
Richard shared, “It was amazing to let people know” (Nguyen).
Noel typed, “Amazing!” (Doog), Joe, “Awesome!” (Kelly), Josh, “So excited!” (Berkau) Andrew, “Yes!!!!! Freedom was here!!!!!! My life would be changed forever. I believed a new life was possible. I gave thanks to God!!!!! Got a very formidable feeling of hope in my soul concerning getting me education!!” (Simmons)
And Brock, who learned to read at age 5, typed, “It was the most wonderful thing that had ever happened to me and my family!” (Troutman).
Was the monk intended to be celibate of all humanity as a choice? Wanting to connect as humans was always something we were willing to engage in. We are meant to be together. When we saw what incredible world changing satisfaction came to each typer, we realized we are so normal in this world. Autism owns our quiescent autonomy, teaching us indelicate, amazing strength as humans. It is as if the world challenged who we are in the depth of our souls to take on its best test, and we survived. The bond is profoundly sown within the dark cold of our aloneness for more than ten years. In tested sister and brotherhood, in profound aloneness and isolation, we coveted a place with others, and now we have one.
Probably placed most highly is love within the quiet amazing language and common experience we could share. Powerful is the sown seed of communication. We lived and still live in the Creator’s kitchen, where all good recipes in life are concocted from the silence. Who is posting what altogether world changing, wonderful spontaneity is working with potential, passion and openness in the clouds of our great, shared silence, a mental practice that reasonably translates unconscious seeds of thought from clouds to rain to the growth of possibilities we see on earth? Given what our experience is as old witnesses to kitchen work, the autistic nonverbal, in community and individually, have potential to explain and predict more thoroughly than our brothers and sisters in the chatty verbal world. We are differently gifted and placed by God in this time of change.
You notice that, too, as you get to know Richard, Wyatt, Joe, Keny, Maddie, Andrew, Brock, Josh, Megan, Adriana, and Noah. What you know is that all have learned to care deeply for others and their circumstances. If this is a splinter skill, more people around us need it. Nearly all of our friends would pursue teaching or healing backgrounds if we were normal. Long before other peers, all were reading and loving the knowledge and capacity for thought they were developing. Holding each in his isolation, through the physical, emotional , and spiritual pain and outside of the loss and abandonment so intense that we couldn’t convince our parents of our abilities, was hope for being discovered in our tomb-like sepulchers of slaughtered human innocence.
Is it a crime to be autistic? The world punishes us with denial of education for that. Is intending to contribute and learn despite our challenges something schools should punish by making us lesser special cases and denying educational and behavioral insights for good citizenship? You look at Joe and everyone else who were only discovered as competent around age 15 ½. All were discovered by someone unconnected from the school district they are in.
You ask why each of them is still fighting, most for two to four years, to have their first general education experience and to have a chance … just a chance … for a Core 40 diploma. Every one of your friends in this group is long in intellectual capacity and the ability to absorb and connect complex, unrelated ideas. Their experience in the silence only feeds that kept-secret ability. When you ask if they want to be known as smart or attend college all say “yes!” except Maddie, who thinks it is too late for her. Even more disheartening, all want to be known as normal human beings working to cope with a difficult experience. Only time with each other, the keyboard, and those who honor their competence give respite from life skills hell.
The bond of brothers and sisters desperately wanting an opportunity instilled in their souls for acceptance, work worthy of their talents, and to contribute is palpable as you sit with them and hear what they type. Of what cloth are so many cut that parents and professional educators, psychologists, behaviorists, and doctors insist on applying a label to each in our group that diminishes self esteem and confidence and then omits to support active student and parent requests year after year? Like the insane man who keeps trying the same thing over and over again, the schools do this with life skills students. Using their budgets as guides, the value of each failure is an asset to them. Looking at the ledger balance that doesn’t penalize them for failure to educate and does teasingly provide extra funds for expensive special needs directors, assistants and police represents various forms of incentivized political theft of our educations. You like ideas of federal troops in the schools to ensure their education and autistics shaping the system that educates them.
You listen to the litany of dreams to be known as deeply caring, smart, funny, loving and articulate from individuals who must strain their faces to smile so much that you can’t get them all to do it for a picture. They came from years in the silence with no communication, and even from inability to express themselves without support only for a few hours before our meeting. As we say goodbye for today, they return to the silent source of deep thought and passion for loving again. We are reminded of our sweet bond of brotherhood across the world and outside of time, and of wounded humanity’s deeply suffering little ones who may never be known. Only typers are in a place to share the wealth of this place so eloquently with our “splinter skills.”
Least appreciated by powerful persons are the costs we have just shared. What can one know of winning’s cost except another champion? Portraits of heroes is what we see. ‘Old souls’ is sometimes the name given to deeply human persons. You are overwhelmed with sadness, the waves of sorrow crashing over you, and shed a tear, exhausted in a body that carries the weight of the world. You are in the presence of greatness and its war with evil. Peacefully, you know who and what love cares for. In a state of exhaustion, you slip into sleep. Tomorrow, powerful friends think of you in prayer. We always will remember you.
I. The $5.2 billion figure is calculated as the average cost to educate each autistic child times the number of nonverbal in the country. The following steps and sources were used in this calculation:
a) The government spends an average of $19,300 per nonverbal autistic student per year per child determined as follows:
i) $10,700 for a normal student according to the U.S. Census Bureau during fiscal year 2013. “Census Bureau Releases New Public Education Finance Data.” Public Education Finances: Amount Each State Spent per Pupil in 2013. June 2, 2015. Web. October 10, 2016.
ii) Special education adds $8,600 per year, on average.
b) The U.S. Census Bureau figures identify 73.7 million under age 18; The U.S. Center for Disease Control (CDC) estimates 1 in 68 have autism = 1,083,824; of these, an estimated 1 in 4, or 270,956 children under the age of 18, excluding everyone over age 18, are nonverbal, meaning “they cannot functionally communicate with others using their voice. See Autism Speaks reference. The source data follows:
i) Census 73.7 million under age 18;
http://www.childstats.gov/americaschildren/tables/pop1.asp?popup=true SOURCE: U.S. Census Bureau, Current Population Reports,
ii) CDC 1 in 68 have autism = 1,083,824;
iii) Autism Speaks Researchers Focus on Non-Verbal Autism at High Risk High Impact Meeting. October 9, 2009. https://www.autismspeaks.org/science/science-news/researchers-focus-non-verbal-autism-high-risk-high-impact-meeting.
c) $19,300 per student x 270,956 = $5,229,450,800
Copyright 2016 John Smyth
Works Cited (Links open in new window/tab.)
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