Dispatches from the Front: A series of sketches for parents of children and adults with Autism Spectrum Disorder, their relatives, caregivers, and friends. Age of Autism Contributor Dan Burns writes: In Dispatches from the Front, I tell my story of Hope Ranch, with all its challenges, disappointments, and sometimes unexpected and gracious results. I hope to inspire the creation of well organized intentional communities where our injured children can thrive, heal, and give back to society. To that end, I am grateful to the editors of Age of Autism for this opportunity to share my experience with you, the reader. Please comment on the chapters as together we discuss and share the questions to be asked and the lessons to be learned. I hope you enjoy reading about my friends!
The characters in Dispatches are inspired by real people. To protect their privacy, I‘ve given them nicknames. For dramatic purposes I have embellished scenes, created composite scenes, and invented dialogue. While the narrative is not factual in the most scrupulous sense, at its heart, the story is true.
Chapter 01: The Revolution: A Call to Action
By Dan Burns
Ben is my beloved son. Expressions play across his face like light reflected from rippling water. He says up, go, yes, but never no. He likes green apples and almond butter. Craves wheat, cheese, and sugar. Trained for a career in food service, but fired from Cici’s Pizza for grazing at work. Feeds himself with his fingers when he can get away with it. Breaks out laughing at odd times. Hits himself in the nose when angry. Sticks his fingers in ears for God knows why. Strips off his clothes. Hikes and bikes state park trails. Can out-sprint me. Vaccine injury. Autism.
In the spring of 2010 Ben and I walked down the steps toward the deck of Mozart’s Coffee Roasters, overlooking Lake Austin, on task for Autism File magazine to interview a dangerous man. A British doctor, gastroenterologist, writer, film maker. Discredited; struck off the medical register, a notorious menace to public health. A fraud, it was claimed by the mainstream media, who must be silenced.
Ben took in the scene with deep, intense eyes that flashed around the deck, looking for food. What he saw: blue-jeaned young professionals, Earth mommas, and backpack-toting graduate students who sipped cappuccinos, surfed the internet, writing or chatting, grazing on fresh bakeries, carrot cake. Birds and squirrels sparred for scraps.
“Go,” said Ben. He hopped toward a picnic table under a knurled live oak. A sign on the trunk said “Keep Austin Wired.” A squirrel leapt from the oak tree and perched near a distinguished older patron. The man was hunched over his computer, head down, eating a blueberry muffin.
“Are you …?”
Ben lunged for the muffin. The writer choked, put it down, and lifted his head. Beard. Could have been Hemingway.
Still choking, “No.”
The squirrel pounced for the undefended goody, but Ben’s hand was faster, muffin to mouth. I grabbed his shirt, pulled him to me, flashed the “no” sign, and clawed the crushed mess out of his hand.
“He can have it,” said Hemingway.
“Makes him crazy. Gluten, sugar.”
“You need to put a leash on that kid.”
I felt a flash of anger. “I hear that a lot.” I tossed the gutted muffin to the squirrel.
Ben pounded himself on the nose. “Uhhhhh.”
I spun him around toward me and made eye contact, face to face. “What do we do when we get mad?”
Reading my lips, Ben whispered. “Don’t. Give. Up.”
Ben and I had come a long way. I remembered an incident from age two. He was running from wall to couch in the doctor’s waiting room, flinging himself on the cushions and laughing, twisting as if immersed in a tank of piranhas, upshifting from giggle to scream. I grabbed him, made eye contact, distracted him for a few seconds, but the receptionist wanted a form filled out. Perhaps she did not understand that if I took my eyes off this child long enough to write my name he would have his arm in the piranha tank. I picked up a pen. He darted to the bookcase. The other patients pretended we weren’t there, but they were not fooling me. No one can fail to notice a child who is screaming and tearing the pages out of a Dr. Seuss book. I locked my hands on Ben’s forearms and crossed them over his chest. He was biting me. The receptionist asked me if my contact information had changed. Yes, my name, telephone number, and email address are exactly the same as they have been for years. But I no longer live on this planet.
The doctor is forty-five minutes late.
“Mr. Burns?” the nurse says, holding the hall door open. Now she is going to try to weigh my son. It’s futile. Why doesn’t she get this? Ben screams, hits, grabs. “He weighs the same as last month,” I announce. How much that was is anybody’s guess. What difference does it make? Dr. Stansen will prescribe another round of pink, bubble-gum flavored Amoxicillan. I will need to double the prescribed amount because Ben will spit out half of it. But Dr. Stansen will keep prescribing antibiotics and I will keep experimenting with novel methods of inducing Ben to swallow them – did I mention the turkey baster? – because no one has a better idea.
The nurse locks us in the examining room, our padded cell, and I hunker down while Ben destroys the systems. He tears paper off the examining table, bangs the doctor's chair against the wall, turns the water on and splashes it out of the sink, stuffs a handful of disposable ear inspection cones in his mouth and spits them out. The nurse brings in some paperwork.
“The doctor must be very busy,” I observe.
“She had an emergency.”
This is an emergency, I think. “Perhaps we could come back some time that is more convenient for her,” I suggest.
The nurse looks alarmed. “She’ll be here any minute.”
“Yes, but Ben and I won’t.”
“Dear Dr. Stansen,” began the letter I would never send. “I understand you had an emergency. So did I. Can you imagine what I had to go through to get Ben to your office? Getting him out of the car and maneuvering through the parking garage, a kid who twists out of your grip, your hand on his collar but he still slips away, determined to fling himself over the second floor guard rail or lose himself in the labyrinth of the stairwell, who runs toward the street, who opens the nearest car door and honks the horn? Then the terror of the elevator ride, the bad elevator, the one that takes him to the doctor. Can you understand this, you and your nurse with her dangerous thermometer that he will bite and break, your impotent chart, your insurmountable scales? With preparation, I can keep Ben quiet two, maybe three minutes. Those minutes were spent long before you arrived.”
Suddenly Ben was quiet, looking at me. Why? Because I had grabbed him by the collar. I fled through the open the door of our cell and down the hall toward the emergency exit, dragging my petrified child with me. The exit was locked.
Where will I go? Who can help us?
I sat on the cold hall floor with my terrified son, weeping.
I was drawn from my memory by a voice behind me, British accent. “Dan?” I turned around to face a gentleman in a blue sports jacket, a collarless polo shirt, and jeans. Backpack on the table top beside him. Younger than I expected, he could have been taken for a post-doc student.
“Will you and your son join me?”
“Call me Andy.”
“This is Ben.”
“How old is he?”
“Twenty three. Diagnosed at age four, on my birthday.
“Looks like he’s doing well.”
“He’s a wonderful son. I wrote a book: Saving Ben. I plan to follow up with Saving Dad.”
“Yes. Parents are casualties of this epidemic too, battling for their children.”
“And you’re carrying the battle flag for us. Shall we get started?”
“Go,” said Andy.
Ben sprang up. I grabbed him by the shirt, signed “sit,” turned on my iPhone recorder and asked, “What brought you here from England?”
“One, as your Autism File readers know, I lost my license to practice medicine, my reputation, and my job.”
“Revolutions are more likely to succeed in America.”
Well, the British should know, I thought.
Andy continued. “The medical systems in the UK and the US are broken. Vaccination has reduced communicable diseases, but one in four children is neurologically or immunologically damaged. Allergies. Autoimmune disorders. ADHD. Autism is the tip of the iceberg. We’ve seen prevalence go from one in ten thousand twenty years ago to epidemic proportions today. Within five years it may well double. By then, we’ll see thousands of teens and young adults, many like your son, graduating high school and pouring into the streets, the emergency rooms, the jails. We are totally unprepared to care for this population.”
I was taking notes. “And the revolution?”
“The first challenge is to end the epidemic. And we must care for our injured children, and give these young adults jobs and a safe place to live … a village where they can thrive, heal, and give back to society.”
“By telling our stories.”
“He’s gone.” Ben. I was on my feet. Andy scrimmaged to the street exit. I headed for the boat dock and yelled an audible: “Lower deck.” At the coffee shop door I nearly bumped into Ben, eating a muffin, bewildered by the fuss. I wrapped my hand wrapped around his wrist and dragged him back to the picnic table.
“Write,” said Andy. “Tell your story. Let’s end the epidemic. Then build a village.”
“I’m just a mild-mannered professor.”
Dr. Andrew J. Wakefield settled back in his chair. “So was I.”
Dan E. Burns, Ph.D., is the father of a 29-year-old son on the autism spectrum and the author of Saving Ben: A Father’s Story of Autism. Dr. Burns is a Contributing Editor to Age of Autism and serves on the Executive Leadership Team of Health Choice, advocating for vaccine-injured children and their parents. As a writer, Dan inspires parents to organize businesses and communities where their adult children on the autism spectrum can live, work, play, and heal. As proprietor of Appleseed Ventures, he is developing and marketing the Fountain of Life, a small indoor aquaponic system for teaching ecology and growing herbs.