The Age of Polio: Explosion. Part 5.
A Different Path

Dan Burns' Dispatches From The Front At the Capitol – Question Everything

Dispatch Ben HeadshotDispatches from the Front; A series of sketches for parents of children and adults with Autism Spectrum Disorder, their relatives, caregivers, and friends.

Chapter 5

Read chapter 4 and click through to 3, 2 and 1 here.

By Dan Burns

            “My dad is twying to get wid of me,” said Zero.

            “Why?”

            “To steal my disability check.”

            Zero and I were in the car heading south on Interstate 35 for downtown Austin and the Texas State Capitol to solicit funds for the ranch. Zero sat beside me with his seat leaned back, window open, head resting between the seat and the door, wind blowing through his hair. His computer was in his lap, connected to speakers, keyboard, mouse, a rat’s nest of wires sticking out like a Phyllis Diller fright wig. He was using his computer to play his iTunes collection of love songs. Coming through the speakers, from the movie Shrek, Leonard Cohen’s “Hallelujah.”

I've seen your flag on the marble arch

Love is not a victory march

It’s a cold and it’s a broken hallelujah

I felt a glow of empathy. Zero’s heart had been broken, like mine.

            “Where were you before Hope Ranch?” I asked.

            “A gwoup home.”

            “Why did you leave?

            “I was kicked out. For fightin’ a bully.”

            “And before that?”

            “Missionary school.”

            “Did you graduate?”

            “No. My pwofessors flunked me out.”

            Zero took a breath. “I’ve been in every gwoup home and juvie jail in Twain County Missouwi. I could wite a book about how to suvive  in a psych wahd.”

            “What’s your advice?”

            “Nevah ask questions. Nevah let anyone know you’re sad. Nevah, evah let anyone know you’re angwy. They’ll dwug you.”

            I felt sorry for this uprooted kid. Marooned in a time and place that did not suit him, unmentored, boiling with rage and grief.

            I could relate. Fifty years ago, when I was a junior at Stillwater High School, I was eager to break out of the platted land of my Oklahoma college town and explore the mythic coastal cities of America. I snuck out the window at night and I met with my friends in secret. We drank beer, smoked cigarettes, howled with Allen Ginsberg, flouted obscenity laws with Lenny Bruce, travelled Highway 61 with Bob Dylan, and dreamed of freedom. I wished I could go back in time, rejoin the Rebel Alliance, relive the days of wine and roses. I couldn’t, of course, but maybe I could be Obi-wan Kenobi to Zero, who had no friends.

            “Okay,” I said. “So you’ve been bouncing around these institutions like a pinball since what age?”

            “Five.”

            “Why so many facilities, Zero?”

            “I destroy things,” he confessed.

            “What things?”

            “Stuff. Phones, doors ...”

            “People?” I prompted.

            He seemed to think about that. Then, earnestly, “What’s the difference between a sociopath and a psychopath?”

            “Zero, you are not a sociopath or a psychopath. There’s a yin and yang in everyone.  Creation and destruction. We choose our path.”

            On that note, we arrived at our destination. From the visitor garage on 12th we scurried across San Jacinto toward Capitol Park, through the black iron picket gate, past the bomb sniffer dog and the Ten Commandments monument.

            I asked Zero, “What do you believe?”

            “Basically, nothing,” said Zero.

            “Nada,” I said, thinking of the character in Hemmingway’s A Clean Well-Lighted Place. “Hail Nada, full of nothing. Nada be thy name.”

            “Wight,” said Zero. “I’m a Fweethinker. There is no God. Question everything. That’s what I believe.”

            We were approaching the front steps. “Look,” said Zero. He pointed to a trash bin. “What’s that?” he asked.

            “A barrel,” I replied. “What does it look like to you?”

            “Basically, vibwations.”

            “That’s not reality, Zero.”

            “There is no weality. Just thought, ideas, illusions.”

            How to expose the error in this thinking?  Considering metaphysics, I might have agreed with him. Parallel worlds, multiverses, vibrating strings struck by our imaginations and conjured up out of subatomic foam. Had Zero been reading Brian Greene?

            It didn’t matter. These days I had a real life to live, a family to care for, a cash-strapped ranch struggling for breath. I wanted to pull Zero into my world. Until his case file arrived I could at least befriend him and try to talk some sense into his stubborn head.

            I asked the key question:

            “What do you want out of life?”

            “To weach the top.”

            “What does that mean to you, Zero?”

            “Second Life. Cweate your own reality. ”

            “There’s only one reality that matters, Zero, I said. “And you’re not in it.”

            He grinned. “Hmmmm … Wanna hear a joke? Twue stowy.”

            “Okay.”

            “A few weeks back I wasn’t sleeping well. Midnight. Knock on the window. It was the Loch Ness Monster!”

            “That’s not a joke. No punch line.”

            “Wait. Long stowy showt, we’re dating. And I’m still not sleeping well!”

àß

            We were at in front of the grand entrance to the Capitol. I pulled on the carved handle of the ornate door, tall as Big Tex, which opened onto the central atrium looking up through three stories to the top of the ornate dome. Two uniformed guards were stationed by the scanner, Roy Rogers and Dale Evans, pressed at the seams. “The eyes of Texas,” I said.

             Zero smiled. “I like meeting new people.”

            “Walk through,” said Roy.

            I’d already emptied my pockets into the grey plastic tray – wallet, driver’s license, pen, keys, cell phone – while Zero strode through the scanner ahead of me. It blasted. He dug into his pocket and handed the guard a brown pocket knife with “Be Prepared” stamped on the side.

            “Texas ID?” asked Roy.

            “He doesn’t have one,” I said. “He just came down from Missouri.”

            “Step aside, please,” said Roy.

            “Wait,” Zero signaled to me. He whispered something to Dale. She laughed. I picked my cell phone up out of the scanner tray and got busy with my email while he chatted up the guards. This kid had been president of his Salesmanship Club in high school, but could he talk his way through a security checkpoint? Yes. Soon Roy and Dale were laughing and joking with him, shooting sideways glances at me.     

            “Go ahead,” said Roy, returning to his checkpoint, smiling. “Your son can pick up his knife on the way out.”

            I looked around the rotunda, searching for a building directory. Didn’t see one.

            “We’re looking for a representative’s office.”

            “Which rep?”

            I pulled card out of my billfold. It read Representative Elliott Naishtat, District 49.

            “Nash-tat?” I asked. “Room GW sixteen.”

            “Turn left and take the elevator down one floor,” said Roy.

            By the time I put away the card, long-legged Zero was striding ahead of me. He reached the elevator first and hit the “up” call button. When the door opened I beat him to the floor selection panel and pushed the “GW” for the ground floor.

            “Why did you want to go up, Zero?”

            “To see how high I can go.”

            I thought about Zero’s goal: to get to the top. “Tell me about Second Life,” I probed.

            “It’s a virtual world.”

            “Oh, a computer game.”

            “It’s not a game. It’s wheah I live at night.”       

            The elevator door opened onto the ground floor, which was in fact underground. We walked west down the musty-smelling dark-paneled hallway toward Room GW16, continuing our conversation.

            “What do you do in your night world?”

            “I design islands. And spawns.

            “What are spawns?”

            “People like you.”

            “What do you do with your islands?                                                       

            “I lease them to avatars.”

            “Why would an avatar want to lease an island?”

            “Mmmm … spawnkilling.”

            I felt a chill. Was I nightly prey, killed for sport in a virtual world?

            At GW16, the receptionist, Ms. Nancy Walker, greeted us. She was cleaning out the office, putting things in boxes.

            “We’re looking for Elliott Nash …”

            “He’s not here.”

             “When will he be back?

            “Oh he won’t be. He’s retiring.”

            Naishtat was our link to funding for a model ranch for ASD teens and adults. The pilot project, launched under a former governor, was on hold after the Texas legislature had declined to fund it. But with a tidal wave of ASD kids aging out of Texas high schools and pouring onto the streets, homeless, jobless, no place to go, I felt the funding initiative could be revived. Representative Naishtat had been one of the visionary sponsors. Now, he was a goner.

            “Governor Perry will miss him,” I ventured.

            “I don’t think so,” replied Ms. Walker. “Mr. Perry threw us under the bus. Do you know Elliott?”

            “I met him at an Ann Richards reception.”

            “She was the last real governor.”

            Ms. Walker resumed her packing. I turned to leave. Zero was already out the brass-handled door.

Comments

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Grace Green

Patience, your understanding of autism doesn't seem to include the possibility of varying levels of injury. also, consider that the more able ASDs like myself might have been refused a diagnosis as part of the criminal cover-up. I do not subscribe to the neurodiversity movement. I believe autism is caused by all the environmental triggers that you list. But I do wonder how you can refute the diagnosis of someone like Zero. And if you're only willing to stick together with parents of children who were diagnosed in early childhood you are excluding not only me but Dan Olmsted, Andy Wakefield, Del Bigtree, Eric Gladen and many others.
I'm afraid I don't have the time or the ability to spend decades reading papers. That's because I'm a mercury-poisoned sufferer living on next to no money.

Patience (Eileen Nicole) Simon

Grace, Your not believing in psychiatry or accepting anything in the DSM will not stop others from writing about these things. I am just a beginner at learning to write, but I have spent decades in libraries, reading everything I could find on language development and aphasia. I will continue to try to make sense of it.

My son's autism was caused by head injury and asphyxia at birth. But autism has many causes: Prenatal rubella infection, prenatal exposure to valproic acid (Depakote), genetic disorders like PKU (phenylketonuria), tuberous sclerosis, neurofibromatosis, lead poisoning, and more. What is needed is to understand the exact injury in the brain caused by all of these.

The increased schedule of vaccination is a highly visible possible cause of autism. Research on how the brain is affected by vaccines must be demanded. Mercury damages the brain in the same way that asphyxia at birth does, so does prenatal exposure to alcohol and Depkote. This evidence has been in the medical literature for decades. Damage of brainstem circuits by alcohol was described 135 years ago by Carl Wernicke (in 1881), and is known as Wernicke's encephalopathy.

I am not always clear, but I don't understand what I wrote that makes you think I reject the support of Dan Olmsted?

Grace Green

Patience, thank you for your response. I have to say I don't accept anything that's in the DSM because I don't believe in psychiatry. The language you use cannot be tied down, such as autism etc. Giving words capital letters doesn't help. I think you have explained that your son received his disability due to asphyxiation at birth. No-one else on this website has the same condition and most believe that vaccines/mercury poisoning cause autism. They also cause many other conditions.
My own case is that I have two children because of being taken advantage of by an undercover government agent - there are several such cases in the British courts at present. Now that I know I have ASD I realize that any relationships I had involved exploitation which I wasn't aware of at the time. There is no possibility of my sons having partners or children.
I'm really astonished that by your last sentence. Do you also reject the support of Dan Olmsted for example?

Patience (Eileen Nicole) Simon

Grace, Borderline Personality Disorder is in the DSM. In PubMed search terms borderline personality disorder brain brings up 557 citations. Clearly it is viewed as a brain disorder. Schizophrenia is a brain disorder, and like autism likely involves the auditory system.

In 1969 auditory system damage was found in monkeys subjected to asphyxia at birth. In 1962, blood flow was found to be greater in centers of the auditory pathway (SS Kety, free online in PubMed). The idea of "brain damage" is wishy-washy unless specific circuits like those of sensory pathways, or control of movements are discussed.

Language disorder in autism could be the result of auditory system damage. Auditory system damage has been reported in cases of autism, and in laboratory rats exposed to valproic acid during gestation (put authors Lukose and Kulesza in PubMed).

I don't know you, so cannot know more about your autism than what you write. You have children. I wish my son had children. The unlikelihood of this is very painful to me. Your autism seems no way similar to his. Sorry, I can only stick together with those whose children's autism was diagnosed in early childhood.

Grace Green

Patience, I am genuinely puzzled as to what you see in my views as "wishy-washy unscientific". In my view, "borderline personality disorder" is completely unscientific as their is no biological basis to any so-called psychiatric diagnosis. On the other hand brain damage is brain damage, and even injuries sustained in adult life - such as car accidents - have traditionally described as "invisible disabilities". When so many of us are being dismissed by the medical profession as just mentally ill I think it's important for us in this place to refrain from passing judgement on someone like Zero who may well have ASD well hidden under his prickly exterior. One of his complaints was of being expelled for standing up to a bully. It's a common experience of many Aspies that we are daily bullied but if we try to defend ourselves we are sanctioned! In summary, we are all brain injured by vaccines, or other mishaps, and we should stick together.

Grace Green

Patience, I have often read your descriptions of your son's condition, and I feel a huge amount of compassion for you both. However, your last paragraph sums up my difficulty - I clearly DON'T know how to ask for help, because I have not been given health care for many decades, I'm routinely refused dental treatment, I don't get any welfare even though I have no other means of supporting myself. My children had to grow their own food, and the younger one, who is still providing for me now, didn't even get his Child Benefit. I would LOVE to help you if I lived anywhere near you, but what I
AM doing is standing alongside you and everyone here, agreeing with this "mission". We MUST all stand together, and seeing it as "competition" is very sad in my opinion when we have more political strength in numbers.

Patience (Eileen Nicole) Simon

Grace, my son was given a diagnosis of Asperger syndrome 12 years ago. He is high functioning, and a savant in automotive history, music, movies, and more.

My son also did not learn to speak until he was almost 6 years old. His developmental problems were well documented in his pediatric records. Gillberg and Cederlund wrote two papers on Asperger syndrome in 2004 and 2005, and noted that speech delay was prominent in their 100 cases. In PubMed I see more recent papers, which I will lookup.

I have found myself in a tiny minority for 50+ years, with people telling me I should be more graciously accepting of my son's disabilities. The minority of people like my son have been totally neglected when it comes to getting help.

"Recovery is real" is the claim made by the MA Department of Mental Health (DMH), and "We transform lives" is on T-shirts distributed by Vinfen community services. My son might have been a shining example of "recovery" or a "transformed life." Instead he continues to run away from his group home. His physical health is a primary concern when he is finally found.

I am most grateful to the police (Boston, Randolph, and State Police at Logan Airport) for finding my son and helping me get to the hospital before the evaluators determine he is not suicidal or homicidal, and release him to the street. These evaluators are contracted for by DMH. What about my son's physical health?

You know how to ask for help; my son does not, and it is very scary. People who claim they are on the "high end of the spectrum" have never offered any help to me. Don't expect me to accept the wishy-washy unscientific views of ALL who are competing for help.

Hera

Interesting article. What does Zero want? If he gets a job, what can money get him that he doesn't already have? Seems like for someone to want to hold down a job, there has to be an up side for them.
There has to be a reason that motivates him , that explains why working is actually a better deal than hanging out on the computer or whatever he otherwise does with his time.
lets face it; most work is boring. So, there has to be a value to Zero that makes it worth it for him to do something that is boring every day.
On Another note, where does Zero's disability check go to? Who is paying for him to stay with the group?
If Zero has got it wrong and his Dad is paying for him, he should be told that.. or whatever the truth is. Better imo to acknowledge the truth whatever it is, than try and pretend it is something different.
Also, Id be interested in the spawn. And interested in asking Zero what if he was one of the spawn instead of an avatar? Would it still be ok to kill spawn?
What if it was the avatars who were being killed by the spawn instead? ( Or this what he feels is happening in real life? Avatars ( like him) being harmed by spawn? Can Avatars and spawn ever become friends?
very intriguing; I'm hoping things turned out well for the real Zero.

Grace Green

Patience, a diagnosis of Asperger Syndrome takes many hours of tests and interviews by a practicing expert in the condition. It can't be made on the basis of one quoted conversation like this. Anyone can have ASD along with any other condition, and anyone can have a mental illness as well as ASD, so they are not mutually exclusive. At the latest Vaxxed Q&A session Polly Tommey has just said that we are now all standing together in this fight, adults with ASD, parents of children, non-verbal and high-functioning. At the earlier session, Andy Wakefield said Aspergers is not a mild form of autism it's a different form of autism, and brings it's own challenges.
If you don't want the support of people like me you will fing yourself in a tiny minority. When people on this website proclaim that autism now affects 1 in 68 you have to realize that includes ALL of us. If you exclude Aspies it becomes legitimate for them to say side-effects are rare!

Dan Burns

Jenny, the chapters are “sketches” in real life chronological order. I plan to cover the nine-month lifespan of the ranch in twelve short chapters, so "Dispatches from the Front" is like a TV series, “West Wing” for example, with lots of undramatized events between the episodes. I appreciate that you’re spinning around, so I’m prompted to include more orientation in future re-writes.

“Zero” was my real character’s nickname in high school, based on a low-budget cult film that few have heard of. He says he hates the name, and we never used it in real life. But in the story I’m writing it sort of fits a kid with great potential and little, at age 21, to show for it.

In real life, Zero came to the camp carrying around a quart bottle of Sprite, his favorite beverage, always at hand by his computer. I plan to include that in the re-writes. My son is a Kombucha fan and I wish the same for Zero.

Thanks for your comments. Please keep reading and writing!

Dan Burns

Everybody, I'm making changes in the story in response to your comments and questions. Other readers, please join in and keep them coming.

Benedetta

Jenny;

I only understood a word or two of what you said. I am sorry; can you expand?

Jenny

I like the words and stories themselves, but feel like I'm flailing in deep water, spinning around looking for the nearest shore to give me a place in time. Are these chapters in real life chronological order of any sort?

Yes, you have the right to request his clinical records, especially if you are wanting to develop your ranch for those with autism, as opposed to other diagnoses. You also have the right to try and help him if you choose. You have experience with autism from raising your son, and major sympathy for families dealing with difficult issues stemming from behaviors unmanageable in the context of regular societal expectations. I know there are even overlapping diagnoses along with autism. You are the one who knows best what your ranch is capable of at this point in time.

Kind of curious as to why the nickname 'zero.'

Your description of Zero makes me think he is smart, clever, and has kind of a cynical sense of humor, and maybe doesn't want to work for anyone else. Are spawn, in his opinion, good people or bad people or both. Are avatars in his opinion good people or bad people or both?

He could have his own story website, in which he could set himself up as the imaginary main character, as high as he wants to go, or maybe place himself at the bottom of the story, and have readers pay a certain fee to contribute to the story and build his hero up. If he sets the story up like a game, maybe the reader/chapter contributor pays $10 to contribute to the story line. If the contributor contributes in a positive way to elevating Zero's main character (himself) or introducing a pathway that moves the hero toward his highest goal in a way that Zero likes or appreciates, the reader's contribution gets published and a $5 refund, incenting them to contribute again. If Zero doesn't like it, he keeps the whole $10, publishes the contribution, but turns the contribution into a dead-end chapter or character, kind of blows him off in a literary sense. He gets to control and steer the buildup, growth, social/economic/whatever life of his character online while trying to build up his real life.

Why sprite after Zero's job interview? We've substituted kombucha for that. Maybe he could become a kombucha barista for your ranch.

Patience (Eileen Nicole) Simon

Dan, a condition referred to as "borderline personality disorder" might be a more accurate diagnosis for Zero than autism. If his father tried to pay his way into your Hope Ranch, might he have paid a doctor for an autism diagnosis?

The neurodiversity movement includes many people who claim their autism was only diagnosed in adulthood. No!!! Language disorder, repetitive movements, and diminished awareness are the sore-thumb features of autism that cannot be missed in early childhood.

The neurodiversity movement is similar in too many ways to the "Mental Patients' Liberation Front" a few years back. Thanks to these split-personality wanna-bees we ended up with deinstitutionalization. What they sought in the old asylums was not the priority. The old asylums were intended as refuge for people suffering from dementia praecox. Split-personality and schizophrenia were euphemisms for premature dementia.

"Social disorder" is the unfortunate euphemism adopted by those who claim they are on the high-functioning, non language impaired end of the "autism spectrum."

Our children, diagnosed with autism in childhood, must be the priority for places like Hope Ranch. I think you should have the right to developmental records from pediatricians, when someone like Zero is brought to your ranch.

Dan Burns

Thanks. More ideas please!

Dan Burns

Do you know anybody like Zero? What would you do if you were me?

Patience (Eileen Nicole) Simon

Dan, God bless you for trying. I like your idea of a conference center. Could you get help from an organization like Marriott? A few years ago I tried to suggest that their Residence Inn hotels might be a good place for autistic adults to live and work (with expert supervision of course).

My son has landed in the failed Massachusetts Department of Mental Health deinstitutionalization mess. He lives in a group home with schizophrenic men. One of them is very scary, even to me. In the past this man would have lived on one of the back wards of a state hospital. Now he is kept on a "close observation" schedule, as well isolated as they can maintain him in a "community" setting.

I am the only parent who visits regularly, and I am viewed as the enemy. Even so my son takes off for weeks at a time. It is more and more difficult to get him back. I am having him write about his experiences. Clearly he goes from hospital to hospital seeking help, but he is autistic and poor at conversational interactions.

Evaluations consist of questions of safety to self and others. He is immediately discharged out the door, homeless again until I am able to get to the hospital before the (contracted for) evaluators. I am told there are too few inpatient psychiatric units, especially for autistic people.

Keep writing, keep soliciting ideas, and thank you Dan for your efforts.

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