Tired of TV series about autistic savants? I’m starting a charity to enhance the lives of teens and adults throughout the autism spectrum, to correct misconceptions and reduce prejudice and discrimination, and to model opportunities for typically functioning teens and adults to benefit from association with those who are disabled or exceptionally abled.
Our first project is a web series, SAVING ZERO, a dramatization based on my experience co-founding a ranch for teens and young adults with autism.
Actors Bryan and Hunter Douglas reveal what brings them to SAVING ZERO. Bryan says, “I have a number of autistic family members on the spectrum. I have a niece who has the speech impediment that [Hunter] plays as Zero … I like being involved in a project that helps show this in a way that is not distracting from these kids as people.”
Few if any imaginative works of art that I know of portray autistic kids at the lower end of the spectrum like my son Ben. Yet these delightful teens and young adults have much to give to society in terms of their love, humor, and friendship. What do kids, teens, and young adults with autism who are not savants give back to the society that supports them? And how are they reshaping our lives? Those are the questions I explore in my web series, "Saving Zero."
Talent and production crew at KD Studios and Conservatory in Dallas have been contributing their time, some on SAG-AFTRA deferred payment agreements, to create this dramatic web series, because they believe in the project.
Linda says, "I feel like the message of this project is one that needs to be heard; I feel like whatever our disabilities are, or whatever our individualities are, sometimes they’re not recognized for those, and sometimes they’re not treated like human beings. I feel like this series will bring a new kind of light to autism; I feel like it will bring … an awareness of these difficulties these individuals face in life to others, and I feel like you’re going to get to know all these young people on the spectrum and fall in love with all of them. Hopefully, the Saving Zero web series will give you a new insight on their world, their challenges in life, the people that we love, and people that we want to keep in our lives.'
This is a work in progress. Click on the face of the boy with autism to see our trailer at www.savingzero.com
INT. TEXAS ROADHOUSE STEAKHOUSE – DAY – ANNIE SINGS
Saloon doors, wood plank walls, mirrored beer posters, back-lit rainbow bar, peanuts spilling out of tin buckets, country western band. BARTENDER and BARBACK go about their business. A DRUNK sits at the end of the bar with his head lying on arms crossed. EDNA, an older woman with her graying hair stacked high on her head plays honky-tonk on an old stand up piano. She is accompanied by an ELECTRIC SLIDE GUITARIST, a FIDDLER, a STAND-UP BASS PLAYER in a John Deer cap, and a DRUMMER behind a drum set, on which “Goat Ropers” is displayed. Two waiters -- MIDNIGHT COWBOY and NATALIA -- are performing a line dance: clapping hands, slapping thighs. MIDNIGHT COWBOY is a beardless youth, T-shirt cut to reveal his underarms, tight jeans, boots. NATALIA, the cowgirl, long flowing hair, green vest, thumbs hooked in her blue jeans pockets, shaking her breasts.
MIDNIGHT COWBOY picks up his waiter’s notebook and approaches the Hope Ranch table.
MIDNIGHT COWBOY: Howdy ‘pokes. Food’s on the way. Dessert?
We see a closed door with a sign, “NEUROTHERAPY – PRIVATE.” The door swings open and we see ZERO lying back in the neurotherapy lounge chair, barefoot, feet up. Electrodes are attached to his forehead, his ear, and the back of his head. He is massaging DASHER, his dog, snuggled beside him.
SLOOPY is calibrating the neurotherapy monitor and control panel. There are two monitors: Zero's and Sloopy's. On Sloopy’s monitor we see a color transparent profile of a human head with various parts of Zero's brain lighting up, glowing in a variety of colors, and dimming and blossoming in turn. Over the profile, three electroencephalograph (EEG) lines (alpha, theta, delta) trace parallel wave-forms left to right. On Zero’s monitor we see a choice of virtual reality landscapes.
SLOOPY: Now which interactive video landscape do you want to walk through?
ZERO: Mmmm “Dark City.”
SLOOPY: Too scary. How about Yosemite Paths? Or …
On Sloopy's monitor, two of the EEG lines cross.
SLOOPY: Zero, you’re making love to that dog!
ZERO: Are you weading my X-waited mind?
SLOOPY: (looking at monitor) Yes. I have to calibrate the system. Everyone responds to a different optimal frequency, so I’m testing them on your brain. How do you feel?
With two percent of our kids on the autism spectrum, a million down and more to come, we are challenged to answer two questions: How is the autism epidemic reshaping our lives? And what can autistic kids, teens, and adults give back to the communities that support them? That is the subtext, the challenge underlying the TV series I and my colleagues Sandra Williams and Robert Reynolds are writing, “Saving Zero.” – Dan Burns.
Logline: A retired gay dad, founder of a Texas ranch for autistic young adults, takes on a charismatic and possibly pathological teen.
CLIMB EVERY MOUNTAIN - ACT TWO – “MEETING MISTY” & “HORSING AROUND”
(With a nod to Aaron Sorkin)
INT. LIVING ROOM, HOPE RANCH – DAY – “MEETING MISTY”
ANGELA, SLOOPY, NATE, ARTIE, AND JOSH are seated around the kitchen table, organizing the evening tasks.
ANGELA: OK, staff. Whadda we have to get done before dinner?
SLOOPY: Neurotherapy. I’ll work on Annie’s performance anxiety.
To read the previous entries in this potential TV show click here. By Dan Burns
If you gaze long into an abyss, said Nietzsche, the abyss also gazes into you. My abyss was the regression into autism of my son, Benjamin, now approaching age 30. Early in the autism epidemic I wrote a book, "Saving Ben," showing how raising him challenged my values and changed my life. The lesson: Ben is not just a wretch to be healed, but a song to be sung.
Not that the singing comes easily, or often. Raising Ben put a U-turn in my career. I became an advocate for my son, and I started a ranch for teens and young adults with autism. I learned the wisdom of Jean Vanier: "If you enter into a relationship with a lonely or suffering person, the one you came to heal becomes your healer."
With two percent of our kids on the autism spectrum and more to come, we are challenged to answer a question: What do autistic kids, teens, and adults give back to the communities that support them? How is the autism epidemic reshaping our lives? That's the theme I'm exploring in “Saving Zero.”
Logline: A retired gay dad, founder of a Texas ranch for autistic young adults, takes on a charismatic and possibly pathological teen.
SAVING ZERO – ACT ONE SCENE 2 - ROCK THE CAMPERS
EXT. PICNIC AREA IN FRONT OF STAGE – DAY
The performers are on the makeshift stage. A BANNER reads “Grand Opening Hope Ranch.” On the stage, a big FUNDRAISING THERMOMETER topping out at $250 Grand. At its foot, a humble TIP JAR with an IOU and some LOOSE CHANGE. A SIDE SIGN WITH a BALLOON says “Happy Birthday Annie.”
We follow JOSH to the VIP picnic table. He takes a seat with ANNIE’S MOM AND DAD. ANNIE’S MOM, mid-forties, professional, an air of competence and authority; beige jacket, matching slacks, briefcase. ANNIE’S DAD, about fifty; at ease in Bermuda shorts, a polo shirt and work shoes. Calloused hands say he’s more at home on a tractor than in an executive suite. Parents at tables to the right and left eat gluten free snacks out of Tupperware and drink probiotic beverages.
On the stage, as Master of Ceremonies, HAMSTER: sixteen, a beardless youth, slight, theatrical, with the elocution gestures of a carnival showman or a Victorian stage actor. Speaks in Shakespearean cadences. A bright, funny, mischievous imp who likes to steal the show.
HAMSTER: What a spectacle! As lofty as the stars in heaven, so be our performers. Start the music!
Here’s a teaser the TV sitcom series I’m writing, “Saving Zero.” My writing partners are Sandra Williams, theater director and Artist in Residence with the Oklahoma Arts Council, and Robert Reynolds from the Actors Studio, NYC. We’ve outlined a full-season series of 22-minute episodes and are scripting three episodes on spec. We’re looking for a producer.
I’m writing this based on my experience as a co-founder and fundraiser for a group home in Austin, Texas. In my sitcom, Josh -- father of Benjy, a 25-year-old son with autism -- intends to establish an archipelago of group homes, ranches, and villages where teens and young adults with autism can find or create jobs. But Zero, a new arrival at Hope Ranch, has no intention of working. He intends to sabotage the ranch and pursue his destiny.
Maybe you’ve seen “Speechless,” comedy series about a mom on a mission who will do anything for JJ, her eldest son with cerebral palsy. Like Speechless, my series focuses on the struggles facing staff and ASD residents at the Ranch.
Josh -- father of Benjy, a 25-year-old son with autism -- intends to establish an archipelago of group homes, ranches, and villages where teens and young adults with autism can find or create jobs. In this scene Josh takes on a charismatic and possibly pathological teen.
SAVING ZERO: DEAD PRESIDENTS’ CASH BOX
EXT. GRAVEL PARKING AREA BEHIND STAGE – DAY
A Pontiac GTO hardtop gas-guzzling muscle car ROARS into the gravel parking lot and pulls up beside JOSH. HOLD ON the driver, DR. BUCK SANDERS -- bolo, goatee, straw cowboy hat. Beside him is LULU, a bored teen, LIPSTICK in one hand, CELL PHONE in the other. The DEAD PRESIDENT’S CASH BOX is between her knees. Sander’s hand is on her leg.
BUCK (to Josh): Are you in charge here?
JOSH: About as in charge as I’m gonna get. (extending his hand) I’m Josh Jackson. Chief Fundraiser.
BUCK: A good man.
JOSH: You are . . .?
BUCK: Dr. Buck Sanders, Professor of Agronomy, Small Grains.
ZERO (from the back seat, unseen): He makes wice have sex.
BUCK: Will you shut up? I’m trying to have an adult conversation.
Here’s the teaser from the pilot episode of the TV sitcom series I’m writing, “Saving Zero.” My writing partners are Sandra Williams, theater director and Artist in Residence with the Oklahoma Arts Council, and Robert Reynolds from the Actors Studio, NYC. We’ve outlined a full-season series of 22-minute episodes and are scripting three episodes on spec. We’re looking for a producer.
I’m writing this based on my experience as a co-founder and fundraiser for a group home in Austin, Texas. In my sitcom, Josh -- father of Benjy, a 25-year-old son with autism -- intends to establish an archipelago of group homes, ranches, and villages where teens and young adults with autism can find or create jobs. But Zero, a new arrival at Hope Ranch, has no intention of working. He intends to sabotage the ranch and pursue his destiny.
Maybe you’ve seen “Speechless,” comedy series about a mom on a mission who will do anything for JJ, her eldest son with cerebral palsy. Like Speechless, my series focuses on the struggles facing staff and ASD residents at the Ranch.
EXT. DRONE SHOT TEXAS HILL COUNTRY
EPISODE TITLE: CLIMB EVERY MOUNTAIN
FADE IN:
WOODED ROLLING HILLS west of Austin. Below us, among the cedars and live oaks, a pattern of intersecting farm to market roads, and a RED HONDA CRV in the distance, driving toward us, sun roof open. We’re moving toward the red CRV and descending, enjoying the rugged beauty of the landscape. Over the CHOP-CHOP of the helicopter we HEAR the VOICE OF JOSH, early sixties. We follow, follow, follow …
VOICE OF JOSH: To me, Hope Ranch is a magical place. The mountain cedars and live oaks of the Balconies Canyonlands spill through the Texas Hill Country to our back door.
We’re a little lower now, the RED CRV closer.
VOICE OF JOSH: Beneath us, the Edwards Aquifer, an underground river, rolling below the range of human hearing but tangible as a heartbeat, the rush of blood.
Along a rutted dirt and gravel driveway, a BATTERED BLUE PICKUP TRUCK, its railing up around the truck bed, bounces toward us, right angle to the CRV. We’re low enough to make out the cargo area loaded with A DOG AND HALF A DOZEN MIDDLE AND HIGH SCHOOL ASD KIDS hanging on for dear life. A CANVAS SIGN on the side of the truck flaps in the breeze.
VOICE OF JOSH: “Build it and they will come.” And they came. Autism Spectrum Disorder families, aides, supporters, seekers, believers, drawn to HOPE RANCH, a future for young people with autism.
Here's another excerpt from my TV sitcom series, “Saving Zero." My writing partners are Sandra Williams, theater director and Artist in Residence with the Oklahoma Arts Council, and Robert Reynolds from the Actors Studio, NYC. We’ve outlined a full-season series of 22-minute episodes and are scripting three episodes on spec. We’re looking for a producer.
I’m writing this based on my experience as a co-founder and fundraiser for a group home in Austin, Texas. In my sitcom, Josh -- father of Benjy, a 25-year-old son with autism -- intends to establish an archipelago of group homes, ranches, and villages where teens and young adults with autism can find or create jobs. But Zero, a new arrival at Hope Ranch, has no intention of working. He intends to sabotage the ranch and pursue his destiny.
Maybe you’ve seen “Speechless,” comedy series about a mom on a mission who will do anything for JJ, her eldest son with cerebral palsy. Like Speechless, my series focuses on the struggles facing staff and ASD residents at the Ranch.
This excerpt is from Episode 3, "Zero’s Path." As the scene opens, Josh and Zero have left the Texas Capitol building and are walking south on Congress Avenue toward the Paramount Theater. Enjoy!
DARK KNIGHT RISING
FADE IN:
EXT. PARAMOUNT THEATER - DAY
The marquee displays "Dark Knight Rising." Under the marquee, a Girl Scout cookie table has been turned over and the GIRL SCOUTS are on their hands and knees on the sidewalk picking up cookies. A trail of crumbs and box parts leads from there to a parked police car. The GIRL SCOUT MOTHER is glaring at the OFFICER (female, about 30) holding Benjy in a wrist lock, preparing to handcuff him. Josh and Zero rush toward scene, Josh in the lead. Benjy is twisting and turning.
JOSH: Ben!
BENJY: Da!
OFFICER: Step back.
Josh is agitated, keeping it together.
JOSH: He’s mine. Please, this is my son. He has autism.
I’m writing a TV sitcom series, “Saving Zero,” based on my experience as a co-founder and fundraiser for a group home in Austin, Texas. In my sitcom, Josh -- father of Benjy, a 25-year-old son with autism -- intends to establish an archipelago of group homes, ranches, and villages where teens and young adults with autism can find or create jobs. But Zero, a new arrival at Hope Ranch, has no intention of working. He intends to sabotage the ranch and pursue his destiny.
Maybe you’ve seen “Speechless,” comedy series about a mom on a mission who will do anything for JJ, her eldest son with cerebral palsy. Like Speechless, my series focuses on the struggles facing staff and ASD residents at the Ranch. I’m writing the episodes with some friends on spec, which means I’m looking for a producer.
Here’s an excerpt. Enjoy!
RUSH FOR THE BUS
FADE IN:
INTERIOR RANCH KITCHEN – MORNING. The table is set with food, vitamins on a napkin. BENJY's Cookie Monster lunch box is open on the counter. This is the weekday morning dance for partners JOSH and SLOOPY. As we open, they take turns plopping items in the lunch box.
SLOOPY: Spring water.
JOSH: Shiitake mushrooms.
SLOOPY: Rice noodles.
JOSH: Pork slices.
SLOOPY: Raisins, dates.
JOSH: Pecans.
JOSH slams the lid. SLOOPY Fastens it and puts the box on the table. JOSH starts stuffing BENJY's backpack.
Off screen we hear Sesame Street’s Cookie Monster: “Me want Cookie.” BENJY (age 29), his short sleeve T-shirt inside out and backwards over his long-sleeve shirt, walks into the kitchen holding his iPad, eyes glued on the Cookie Monster video. JOSH pulls him to the table and guides him to the chair. BENJY picks up a min-pancake with is fingers. He never takes his eyes off the iPad. The sound of Sesame Street runs under the scene throughout.
SLOOPY: Hurry Benjy. Take your pills. Use your fork.
JOSH (checks his phone): Bus is on our street. Benjy is not eating.
BENJY: Cookie.
Josh holds up a mini-pancake.
JOSH: Look, Benjy. It’s a big cookie.
The bus HONKS.
JOSH: She’s here. Let’s go.
BENJY: Up. Go.
SLOOPY: How many times have we waited for her. She’s early. He’s got to eat.
EXTERIOR: Picnic area in front of the ranch house. In the foreground, a makeshift stage for Hope Ranch Productions. On the stage, a donations sign: Needed: $250 Grand. Donated: $50. JOSH, a one-man band of harmonica and banjo, is singing to the camera, Bob Dylan-style. VAN GO is filming. Parents are seated at picnic tables around the stage, celebrating the Grand Opening.
JOSH: (to the tune of “Talking World War III Blues.” )
I started this ranch A few months ago For kids leavin’ school And no place to go. Autism Spectrum Disorder. ADD. ADHD. Allergies. Asthma. Shall we go on down the alphabet? Tics, seizures, SIDS too. You name it. Whadda ya do? If you’re kid’s disabled It’s all the same. Vaccine injury ain’t to blame. Keep ‘em coming Paul Offit. Pharma. Centers for Disease Coverup. Dallas Morning News. I neeeed the adrenaline.
One year ago this week I attended the Trump rally at the American Airlines Center in Dallas, hoping I could ask him a question. But there were to be no questions, only answers. “Build a wall. Ban Muslims. Make America Great Again.” He pounded the podium and led a cheer: “TRUMP TRUMP TRUMP!”
Here is my question, one year later: Is there a better way to make America great? Yes, I think so, and it may be that vaccine injured families are very close to the answer. Consider these thoughts from The Broken Body, by Jean Vanier, founder of L'Arche, an international federation dedicated to the creation of homes and support networks for people who are intellectually disabled. “If you enter into a relationship with a lonely or suffering person,” says Vanier, “you will discover that it is you who are being healed. The broken person will reveal to you your own hurt and the hardness of your heart, but also how much you are loved. Thus the one you came to heal becomes your healer.”
I’ve set my smart phone to play a tune every morning at 11:11 to remind me to be grateful for my blessings. And to know, with Jean Vanier, that …
Answering my handwritten letter, US Congressman Pete Sessions (Texas) put on his white hat. “As you may know, he replied, “there has been ongoing concern … that there were omissions in a 2004 vaccine safety study undertaken by the CDC … that crucial documents purporting a link between the MMR vaccine and autism were destroyed … I believe that every effort should be made to ensure that vaccines achieve their primary objective, building immunity to a specified disease, while not having any detrimental and long-term side effects.”
Rep. Sessions referenced H.R. 933, the Head Start on Vaccination Act, and H.R. 2232, the Vaccinate All Children Act, both referred to subcommittees.
Good to know that somebody in Congress is reading my hand written letters. Need a motivator to write your representative? Take a look at this short speech by Andy Wakefield on the Texas Capitol steps.
Having run each chapter, we now present "Dispatches from the Front - A series of sketches" in full.
By Dan Burns
For my son Ben
1987 – Present
Einführung
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 1 The Revolution
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.
“Sorry.”
“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.
Dispatches from the Front; a series of sketches for parents of children and adults with Autism Spectrum Disorder their relatives, caregivers, and friends.
I caught up with Zero on the Capitol building steps in Austin looking south toward Congress Avenue. I asked him to pose for a picture and got out my iPhone.
“Knock knock,” he said.
“Who's there?”
“Mmmm …” said Zero. “Who do you want to be there?”
I snapped the photo. It showed a tall awkward kid; knock kneed, head too small for his shoulders, with a goofy look on his face, clowning like a youngster.
“It doesn’t look like you.”
“I can change my bone structure to look like I’m fourteen.”
“How do you do that?”
“Tai Chi.”
While we walked down the steps and strolled toward downtown, Zero shared his secret: using a Tai Chi energy ball to reconfigure his facial features. He rubbed his hands together as if to warm them, then pulled them gently apart, expanding the energy connection.
“Try it. Feel it?”
I sensed something like a magnetic force or an invisible ball of warm cotton between my palms.
“Now thwo the ball to your left hand, then back to your right.”
It felt like rocking a slinky back and forth.
“Bwing your hands up beside your head, but don’t touch.”
I felt warmth in my head.
“Enowgy,” said Zero. He took my picture and showed it to me.
“I look like that?” I asked.
“Mmmm … not weally,” said Zero. “That’s your Atman.”
Interesting but it wouldn’t pay the mortgage. The ranch needed funds, and Zero needed work. His job search was not going well. He’d put in a few on line applications in the outer shopping malls– night shelf stocker at Sam’s Club, desk clerk at Embassy Suites – but there were no call backs. “Zero, you’ve got to follow up,” I’d advised him “Go there in person and apply.” “I pweach followup!” he’d exclaimed, but his heart wasn’t in it. Who could blame him? I thought of the bland suburban superstores of Cedar Park. Not exciting. Austin was a different story.
Dispatches from the Front; A series of sketches for parents of children and adults with Autism Spectrum Disorder, their relatives, caregivers, and friends.
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.”
Dispatches from the Front: A series of sketches for parents of children and adults with Autism Spectrum Disorder, their relatives, caregivers, and friends.
Angela had a job lined up for Zero: a cell phone repair technician at a mom and pop shop. “I can do anything with a cell phone,” bragged Zero.
The night before his interview, Angela was short staffed, so I drove down from Dallas and took the night shift. Zero walked passed my work station, pajama clad, barefoot, on his way to the Hope Ranch fridge.
“Tonight’s the night,” he said.
“What.”
“I’m gonna kill myself.”
I looked up from the computer. His first suicide attempt, he’d told me, was at age eleven, overdose in the psych ward. “It was the only way I could make them stop giving me dwugs.” He opened the fridge and loaded his bowl with leftovers. Barbecue chicken and french fries.
“How, Zero? Rope, knife, pills?”
“I’m gonna slow down my hawt until it stops.”
That made sense, in a Zero kind of way. He claimed he could raise and lower his body temperature by focusing his energy. Same for astral projection and remembering former lives. And time travel. He claimed them all.
But Zero was an insatiable attention seeker. And if hearts could be stopped by motor control, I wouldn’t have lasted past age twenty. Tough love needed. I called his bluff.
“Have a good trip. Get some rest. You’ve got a big day tomorrow.”
Zero, walking off, “I’m not comin’ back.”
I could have called the state mental hospital, Shoal Creek. Or I could have said, “Leave your feet sticking out the end of the bed. Tomorrow morning I’ll tickle your toes. If they don’t twitch, I’ll call 911 and have ‘em dump your body in the creek.”
Angela pulled me aside, concerned. We were by the outdoor grill at Hope Ranch. “Zero woke me up this morning, hungry,” she said, “jumping up and down on my bed like a child.”
“We didn’t get a file on this kid,” I said. “Why is he here?”
“Because his dad brought him, special delivery, with a big check. Harland – that’s the dad – asked to see the camp director. I am the camp director. He asked me if I’d met the Lord. I said no. Then he asked me if we had an alpha male here at the camp.”
“Someone who wouldn’t spare the rod?”
“I guess. I had to bite my tongue. If we didn’t need the money … Look. I don’t think the boy’s autistic. Just a sweet, mixed-up kid. The dad’s the one who needs a drubbing.”
“We need a medical and psychiatric history on Zero.”
“Go for it.”
I walked to the BBQ pit to meet Dr. Harland Stoker, Ph.D., Department of Agriculture at Missouri University. Colonel Sanders in a straw cowboy hat.
“I’m Dan, fund raiser, chaos coordinator and kid wrangler.”
“I’m Harland. You in charge here?”
“About as in charge as I’m gonna get,” I replied. “Your son’s a bright kid.”
“Sharp as a tack.”
“What’s his disability?”
“Doesn’t have one.”
“So why is he here?”
“To get a job, like your ad said.”
“Can he work?”
“He worked for me. Agronomy. Rice harvest. Best hand I ever had. Quit to go to missionary school. Quit that, too.”
“He has an autism diagnosis?”
“Yep. And half a dozen others. He’s figured out how to behave in such a way that the government’ll take care of him.”
“Is he violent? Has he ever harmed anyone?”
“No,” answered Harland. “Been in a fight, though. Tried to take a baseball bat away from a bully who was attacking a little kid. No good deed goes unpunished. ”
A series of sketches for parents of children and adults with Autism Spectrum Disorder, their relatives, caregivers, and friends. Read Chapter 01 here.
Chapter 2
Loaded with gear – my backpack, a Starbuck’s traveler kit, suitcase tumbling out of my arms, computer cord dangling – I lurched to the ranch house, shoulder-pushed my way through the stubborn door, and stumbled through the hallway into my new adventure: fundraiser for Hope Ranch in Cedar Park, Texas.
It had been a long journey. As Chair of the Autism Trust USA, I’d organized a parent task force to conjure up Andy Wakefield’s grand vision: a clinic, restaurant, gift shop, and conference center for ASD teens, young adults, and their families. The idea was to create sheltered communities that would be self-originating and self-sustaining, an archipelago of villages where our kids could safely live, work, play, and mend. Out of a whirl of activity arose an angel investor, Angela, a native Texan who took on the project as her own and re-branded the village Hope Ranch.
“Is the TV crew here?” I was expecting News 8 Austin, the Warner cable station.
“Not yet.” Angela from the kitchen.
I dumped my gear on a card table and dug out my laptop. Bent down to plug in the power supply but couldn’t reach the wall socket. Too stiff. Too old.
“Zero!”
He dropped his iPhone and sprang up from the couch. Tall and skinny; torso perched on stork legs, head too small for his shoulders, raven hair, duck-tailed forelock. Hawk eyes overhung by brows that plunged toward his nose, a flying Valkyrie. Able to karate-kick a door in half, rip a telephone off the wall. “A furry creature,” he wrote of himself on Facebook, “dragon, wolf, cat person, and rarely but sometimes a human.”
Zero grabbed the plug and alligatored under the table. The computer yawned, whirred, blinked, snoozed. I rattled the space bar, hopscotched the F-keys, triple-tapped the mouse. No image.
“Let’s go to my woom,” said Zero. “It’s by the hub.”
Zero’s room, a scrambled egg. No way.
I heard a knock at the front door. It was the New 8 reporter, video camera in hand.
“Where’s the crew?” I asked.
“Just me,” said the reporter. “I shoot, script, edit, and file, solo.
“Ok. Let’s take the tour.”
I opened the back door and drew a deep breath of the cedar-scented air. To me, Hope Ranch was a magical place. The mountain cedars and live oaks of the Balcones Canyonlands spilled down through the hill country to our doorstep. Beyond the ranch boomed Cedar Park’s gleaming new shopping centers. A university, an airport, Dell Computer headquarters. Jobs for our kids. In the middle of it all, five undeveloped acres.
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.
“Sorry.”
“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.”
Dispatches from the Front - A series of sketches for parents of children and adults with Autism Spectrum Disorder, their relatives, care givers, and friends.
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 was 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. 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 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 coughing, “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.
“Sorry.”
“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.”
I took Hunter to get his MMR shot at 15 months. Within 48 hours he was rocking back and forth on the floor, screaming and banging his head. “Give him Tylenol,” the doctor said. “He’ll settle down in a day or two.” But my happy toddler was disintegrating before my eyes: guttural sounds, head tilted, scratching his face. I surrounded him with pillows to protect his head. Many frustrating medical checkups later I finally read the vaccine package insert. That’s when I knew: My son has autism. We took him off prescriptions meds, detoxified his body, changed his diet, put him on cannabis oil, and reset his gut bacteria. He opened up to us with smiles and hugs.
Three years ago, using what I learned from my research on diet and my experience with Hunter, I started an online magazine about growing healthy food. If someone were to ask me one of the most beneficial therapies for autistic children, besides cannabis oil, I would have to say gardening. Put your kids’ hands in the dirt teach them how to grow food. Better yet, teach them aquaponics: growing fish and plants together. Dan Burns of Appleseed Ventures sent us his indoor aquaponic waterfall garden. Hunter and his brother installed it. Hunter loves to watch the water bubbling, the fish swimming, the plants turning toward the light. He tests the pH levels and lets me know if there are any ammonia or nitrate problems. It’s a way for him to learn about biology, science and ecology, the components of the system working together. The waterfall calms him. And he loves the fish.
We just celebrated Hunter‘s 17th birthday. Today he can talk all day about the universe and new star systems. He creates online games from scratch, grows food, and draws some of the most amazing things we have ever seen. Our son has recently been asked if he would like to write a children’s book about gardening, and who better to teach other autistic kids how to garden than a young autistic man who has done it himself? It’s been a long and difficult road, but worth the journey. I can now kiss my son on the face without him pulling away. He’s reconnecting with the earth, with himself, and with his family.
"Appleseed Ventures is a parent-driven enterprise. We employ autistic teens and young adults to assemble and package Aquaponic Waterfall Gardens. It's a gateway to a future that works."
If you were fortunate to hear Dan Burns this weekend at the Generation Rescue Autism Education Summit, you learned about his parent-driven initiative for employment of adults on the spectrum. Called Appleseed Ventures, the product they offer is a fantastic aquaponic growing system. And Dan is generously giving a system away to a lucky AofA reader. Imagine growing fresh herbs year 'round in your kitchen! And you can buy small fish to decorate the water with their color.
My daughter and son-in-law own a CrossFit gym. They gave me time to speak as part of their Five Minutes for Autism program. The goal was to raise funds and turn a global spotlight on the impact of autism on families and individuals around the world.
Here’s what I said:
"Autism is a spectrum disorder. Some little kids go to college; some little kids stay home until their parents die. Today I want to focus on how to reduce the risk if you’re lucky, and how to help your child become more independent if you’re not.
Let’s start with reducing the risk. Here’s the Three Big Lies. You’ve heard them on CNN, Washington Post, or New York Times.
Lie number one, autism is not an epidemic. The truth is, when Ben was born, the autism rate was one in 10,000. Now it’s one in 68 boys. You’ve heard it’s just better diagnosing. So where are all the adults like Ben? Few and far between. But I’d bet you know kids in your family, or extended family, or even in this gym, who have autism. Classrooms are flooded with disabled children who weren’t there when you and I went to school. Ask a special education teacher.
Lie number two: autism is nothing to worry about; it’s just another way of being, and neurotribes of autistic adults will usher in a brave new world. Truth is, some of our kids are specially gifted, some go on to college and hold jobs with help. But most don’t. Now, Ben is my hero. He struggles every day. I admire the way he bounces back with his smile and positive attitude and humor when he is misunderstood, excluded and shunned. But I wouldn’t wish on any child, or any family, the screaming, the gut problems, the sleeplessness, the headaches, and the unrelenting mess and stress that go with severe autism. Last week Ben wandered off. He can’t answer when called, ask for help, say his last name or “I’m thirsty.” Six police cars and a helicopter joined the search. He was found when reported for stealing a Coke. Barring a medical breakthrough, he’ll require supervision 24/7 all his life. After Sue and I are gone, who will do that job? We can build more prisons. Or we can find ways to help these kids. As their numbers approach one in ten, they are us.
I attended the Trump rally at the American Airlines Center in Dallas, hoping I could ask him a question. “What about vaccine injuries, autism, and the CDC?”
“Fire them!” Trump would say. And vaccine injury would enter the national discussion. I printed up an AoA neck hanger and headed for the press entrance.
Trump was late but the crowd was mellow and the music was feel-good eighties. All was well, until the program started. A mangled pledge of allegiance, then the grand entrance. Trump, trump, trump. Who complained that unlike other candidates he had to write a different speech everywhere he went, because TV covers him live. Not fair treatment for someone so rich and exceptional as the phenomenal Trump. When does the speech start, I wondered. Twenty minutes in, he was still talking about his money, his celebrity friends, his great leadership, his mistreatment by the “liberal media,” his fantastic negotiating skills.
I gave up listening for content, listened instead to the mortar of his speech, the mannerisms, vocabulary, subliminal patterns. I learned that in Trump’s world there are two kinds of people: good, strong people, winners like himself. And weak people, incompetent losers, who don’t like him even though he has great money and great hair, which by the way is really his own, as approved by the people behind him who clap when he says so.
Then the rhetoric turned darker. We must turn this country around. Make America a great Judeo-Christian nation again. Build a wall. Expel illegal immigrants who lead the gangs and commit senseless killings. We should keep the Latino Ph.D. students who are destined to be winners like Trump, trump trump. But out with babies conceived in Mexico and born on vacation in Texas. And not just Texas. “We have illegals in New York too. They’re everywhere.” The crowd whoops. “We can change that,” he said. “The government doesn’t dictate to us – we dictate to the government! We the people. We, WE ARE the people!” Wild cheering and applause. I imagined I had wandered into an early Nuremberg rally, with immigrants switched out for Jews.
Appleseed Ventures is a cottage industry serving ASD families. We are beginners on this journey. Our first product is an indoor waterfall fountain for sleep. The enterprise could become a hub leading outward to various paths such as seed pod kits (sold by subscription), “Cooking with Healthy Herbs” cookbooks and videos, blogs, retreats, seminars, a YouTube channel, and many more microenterprises beyond our ken. We hope to model parent-created enterprises for other organizations, sharing our successes, failures, and lessons learned. There's far more to do than we can do alone.
Texans for Vaccine Choice banded with the Canary Party, NVIC, PROVE, and several other Texas Health Freedom organizations to defeat 17 of the 18 mandatory vaccination bills proposed in the legislative session that ended June 1st. The one that got away was heavily amended and poses no significant threat to vaccine choice in the state. Here's a peek at the recent victory party, with an address from Texas State Representative Bill Zedler. In the video with Rep. Zedler are founding Texans for Vaccine Choice Leaders Jackie Polvado, Michelle Schneider & Rebecca Hardy. The coalition plans to introduce its own health freedom bills in the next session, which begins January 2017.
Enjoy this highlight from the Texans for Vaccine choice rally in Austin, March 25. Ethan, a 12-year-old child recovering from autism, asked a great “what if” question. Listen to Dr. Andy Wakefield’s surprising answer:
Dreams die hard. As a new Warrior Dad, early in the epidemic, I battled for Ben’s recovery, hoped my 4-year-old-son would join the mainstream soon. Bernie Rimland’s fiery voice, igniting dark facts, blazed up like a whirlwind, lighting our journey. Just beyond the horizon, truth would prevail; the bell curve on the autism incidence graph would trickle down to nothing. Ben, voiceless since his regression, would speak again. Soon.
Decades later, Ben is 27 and still mostly mute. Kindergarten classrooms in Kaufman County, Dallas, Austin, and Gun Barrel City overflow with damaged kids. Moving deeper, I see that the battle is not just about truth and facts. Vaccine promoters, the old warriors, have armies anchored in tectonic plates where hope and money, faith and values, collide with ours. They, too, are dreamers.
Consider John F. Kennedy’s Vaccine Assistance Act, a mass immunization program to safeguard the health of the nation’s youth, improve the vitality of the population, and build a great country by making vaccines available to families that could not afford them (1). And Jimmy Carter’s Childhood Immunization Initiative, launched to eradicate childhood afflictions, prevent mental retardation, protect children from disabilities caused by preventable disease, and reign in the spiraling cost of health care (2). Or Clinton’s Vaccines for Children’s Program and Comprehensive Child Immunization Act, promoted to lower vaccine prices, extend public clinic hours, and shield families that would be bankrupted by illnesses that could be prevented with a cheap, simple shot (3). And now the Affordable Care Act, aimed at reducing health care costs in part with free vaccines and funding for programs to promote them (4).
Ten years, twenty years. The journey continues. Mountains arise. We scale them. Infectious diseases dwindle, replaced by chronic illness. Some vaccines fail, are bolstered by more vaccines. Thirty years, forty years? The horizon recedes, yet the dream beckons still. Promoters study their incidence graphs and plan more shots. And we study ours.
###
End Notes:
1) Elena Conis, Vaccine Nation: America’s Changing Relationship with Immunization, pp. 34-38.
The rolling destruction of Rolling Stone’s campus rape investigative report – centered on a woman named Jackie whose story of a gang rape at the University of Virginia just didn’t hold up – is both horrifying and fascinating to watch. Especially if you’re in the journalism world and know how easy it is to really, really mess things up.
I had a friend at the newspaper in Rochester, N.Y., many years ago whose father had been in World War II and, a propos of incoming artillery rounds, he offered his son this life lesson: “It’s the one you don’t hear that gets you.” I think this means that if you hear an incoming shell, it is going to land somewhere nearby, but if it is coming straight down on your head the aerodynamics are such that you won’t hear it. Or maybe it just means that you don’t hear it land, because it landed on you!
Either way, my friend was using this to make the journalistic point that you can try mightily to avoid serious mistakes and then one lands right on you that you never saw coming. I think a lot of journalists would agree that often it is not the big investigative piece that causes the worst problems, but the piddly little review in the same issue that said the local restaurant used beef that was “obviously less than prime.” If the chef has the receipts for the Grade A steak, you are in big trouble. (Which is why it is always better in a situation like that to go for opinion – “The steak, which was advertised as prime, nonetheless tasted like shoe leather.” That’s protected speech.)
Rolling Stone (I'm a lifelong fan, see my framed 1978 Dylan cover at right) definitely got hit by one they never saw coming, and it was not on a piddly little story at all. Sensitive to handling a rape allegation and not further traumatizing the victim, putting their confidence in a writer with a good track record, and – perhaps – subject to a confirmation bias that frat boys at southern universities are capable of all manner of evil, they simply didn’t see the peril. By not talking to the alleged rapists, and not even to her friends, the whole thing came down to reliance on one version of events.
It would have been so easy to avoid, in retrospect. All you needed was the article editor or the copy editor to ask, did we talk to her friends? (let alone the alleged attackers), followed by a memo to the boss: Questions on Rape Story -- Needs to Hold.
Rolling Stone’s agony reminds me of our duty here at AOA to respect facts and fairness. We are in fact advocacy journalists – we come from a point of view, based on our own research, reporting, and experience – but within that framework we try to be journalistically scrupulous. That’s not to say we’re perfect – and with a blog format, multiple contributors, a mission we champion, and constant battering from people on all sides who can’t bear the fact that we’re right – we have to be extra vigilant. But we do insist on facts. We come up against stories all the time where we need to assess the strength of the evidence and report what we find. Although our critics like to think we just wing it, they would probably be surprised at how much checking and care goes into what we do. Two examples come to mind.
One of the reports I’m proudest of was about the treatment of Alex Spourdalakis. Most of you know that story, and its tragic end. But it began as an e-mail on a Friday night – March 7, 2013 -- from Lisa Goes, one of our contributing editors, describing this god-awful situation and providing photos to go with it. Because of its significance – and, frankly, because I hate getting scooped – we wanted to publish it right away, which we did. Lisa’s e-mail was titled:
“SUBMISSION: Urgent need hoping you find this worth running”
To which I responded: “Wow, very disturbing and powerful. Kim I'd suggest we post this as soon as we have all the pieces together from Lisa, whether on the weekend or not. … an urgent outrage. I'm sure this happens all the time but it is rare to see it so vividly documented in real time.”
And Kim: “OK, having read this and grateful not to have had breakfast first, I’ve prepped the post”
And me: “One of the very best pieces we ever ran or ever will”
There were lots of e-mails in between – does the mom know we are doing this, what does the hospital say, and so on – that were all nailed down. Still, if anything significant about this story had been flat-out wrong, it would have been Rolling Stone-level bad news for us. But it held up, because Lisa was there, she had the evidence, and even while outraged she stuck to the facts. You can see the differences here with Rolling Stone's story. Still, when you hit that publish button, you say a little prayer to the journalism gods to protect you one more time.
Another case in point was the news that Poul Thorsen, late of the CDC, was being investigated for fraud and theft of agency funds. This one was almost too good to be true – which ought to make an editor extra-cautious. To tell you the truth, I had never registered the name Poul Thorsen when this came up, but Mark Blaxill certainly had.
On March 5, 2010, I got an e-mail from a colleague in Denmark with the unpromising title VS:SV. The text said: “Please see the attached file. Kind regards.” Thank God I opened it. It was a letter from Aarhus University in Denmark outlining Thorsen's alleged misdeeds. I forwarded it to Mark Blaxill, who fired back a note, "This is amazing. I’m writing a short piece right now.” A little later he e-mailed, “Can we verify this somehow? I’ve been looking on the Aarhus web-site and can’t find anything.”
Me: “in this situation you can say that it could not be independently verified but ... it appeared to be a statement on aarhaus university's letterhead.”
Mark: “Seems like Jorgen Jorgensen [author of the letter] does exist and is in the role claimed in the letter”
Me: “yes, and here's what appears to be a danish mainstream paper discussing the issue last month without naming thorsen. we're definitely protected legally here ...”
And so we posted the story a short time later. Over on the skeptic blogs, there was discussion for days about whether the letter was a fake, oblivious to the kind of crosschecking we had already done and lacking the skills, or perhaps the motivation, to do it themselves.
Still, the story was almost literally unbelievable. After we published it, David Kirby – who has a solid journalism background – e-mailed, “Are we sure the document is authentic?”
To which Mark responded: “Dan received the document from a contact in Denmark who alerted him to the story. [She also posted it on her small blog.] I've checked and confirmed that Jorgen Jorgensen does exist and is in the role claimed in the letter. I haven't seen anything on the Aarhus web-site about this. We do have confirmation (see attached) that this has been covered in the Danish press. The early report from the Copenhagen Post doesn't mention Thorsen by name, but based on what I had seen as of yesterday, I predicted it was Thorsen. So seeing this letter naming Thorsen is consistent with everything we know."
I added: “i have a high degree of confidence in its authenticity, given the mainstream reporting in denmark in the past few weeks that matches what the memo said.”
Notice the phrase, “A high degree of confidence.” That is what we were working with at the time. Today, of course, we are certain it is authentic, but in real time you have to constantly assess the possibility that something is amiss versus the possibility of missing the story altogether. In that circumstance, having a high degree of confidence was sufficient for publication. If you had to be certain, you’d get scooped every time. Which makes this such an interesting business.
So this is the kind of thing that goes into our news coverage and analysis here at our humble web site. I would like to think that this kind of collaborative and cautious editing would have saved Rolling Stone, although, as my friend’s said, it’s the one you don’t hear that gets you.
There’s another reason to care about facts and Rolling Stone – it published Bobby Kennedy’s Deadly Immunity, which required some corrections. I said at the time that these were the kind of things that a good fact-checking operation could and should have caught. Bobby’s basic thesis was incontrovertible, but the relatively picayune fact errors were enough to allow some to divert attention from that. Rolling Stone, to its eternal credit, refused to retract the piece after Salon did so. But the Kennedy saga and the Rape on Campus story suggest they might have a systemic problem with rigorous fact-checking and asking the kind of fail-safe (one of my editors called it “bomb-proofing”) questions that can keep the shell from landing smack on top of you.
So, hey, Rolling Stone, deconstruct how you screwed up, get yourself a couple of cranky and skeptical copy editors, the old-fashioned kind who go out back to smoke and probably drink at lunch. And rock on! We need you, bro.
Update: 7/15: Autism Enterprise Roundtable CANCELLED Due to low registration, Appleseed Ventures Autism Enterprise Roundtable, which had been scheduled for Saturday, July 19, at McKinney Roughs Nature Park near Cedar Creek, Texas, is cancelled. Instead, we’ll turn the event into a family picnic. All autism families and their friends are welcome to attend. Bring the kids! PS. As an alternative, consider attending “The Brookwood Way” Network Days Conference, especially the Saturday afternoon AUGUST 21 Seminar on “How the Pieces Fit Together in Brookwood’s Enterprise Program.” See details at www.brookwoodcommunity.org/about/center-for-learning/network-days/
We are grateful to Dan Burns for his leadership in crafting a full and meaningful life for adults on the spectrum. Here is a great opportunity to meet others to talk about employment and autism for all of our children, like my daughter who is turning 18 today. Thank you, Dan.
By Dan Burns
Appleseed Ventures is hosting an Autism Enterprise Roundtable at McKinney Roughs Nature Park, Cedar Creek Texas (between Austin and Bastrop) on Saturday, July 19, for autism families and advocates. You’re invited!
Overview and purpose. Job opportunities haven’t kept pace with the autism epidemic. The Appleseed Autism Enterprise Roundtable 2014 will focus on creating home-grown businesses to employ our transitioning kids. Dan Burns will facilitate this informal, workshop-style event. All who attend will be invited to share information about the enterprises they envision or have built. The purpose is to cultivate a network of resources to employ our young adults on the autism spectrum.
Agenda and Program. The Roundtable will convene at 10:00 AM Saturday, July 19, in the Verbena Room at McKinney Roughs Nature Park. Invited participants include:
• Peg Pickering, mother of an 18-year-old son with autism and author of Prioritize Organize: The Art of Getting It Done • Jennifer Kaut, autism specialist at The Texas Department of Assistive and Rehabilitative Services (DARS) • Jackie Schlegel-Polvado, Founder and Executive Director at Ashlyn's Hope • You. This is an open, audience-participation event, and you are invited to share your hopes, concerns, and tips on enterprises you are currently managing, organizing, or envisioning.
We plan to conclude the formal workday at 3:00 PM with informal conversations continuing in the beautiful shaded picnic areas overlooking the valley as desired.
Pre and Post Events. Dinner Friday August 18 (5:00 for drinks, 6:00 for dinner) at Viejo’s Taco and Tequila on Main Street in historic downtown Bastrop near a scenic bend in the Colorado River. Saturday after the Roundtable, look forward to a catered event on the river bank near the Crossing. For directions call Dan at 214-914-0845. Bring your own instrument or purchase an inexpensive kazoo from Larry Land Music and join us for “Pickin’ on the Porch” (anybody can play) for a good time. Optional tubing is available through the Bastrop River Company.
It’s been a tough week, year, decade for ASD parents. Relentless attacks from all sides, including our own. Sticks and stones. Sometimes I give up. But then I don’t. Why? Consider the bigger picture …
1. Rimland-era hero Jill James is supported by Safeminds and – who da thunk it – The National Institutes of Health and the CDC.
2. Maybe U.S. Representative Bill Posey can’t pronounce “Thimerosal” but it don’t matter. He showed up at the hearing and stood up for parents like us. That’s courage, what it takes. Thank you Bill!
3. My 26-year-old pre-verbal son Ben is learning to spell.
4. The seas part. The Berlin Wall. Gay marriage. Surprise surprise! More partings to come.
5. Our dreams survive us. I may not live to see it, but Elon Musk’s new SpaceX Dragon V2 rocket can land anywhere, and he is going to Mars.
Need a lift? Here’s a true story. In 1952 celebrity Jane Froman, her body shattered in an airplane crash while entertaining WW II troops, commissioned and performed a song to offer hope and faith to Americans at home. I was eight years old. The flickering shadows on our family’s 9-inch TV, and Froman’s body language and celestial voice, moved me then and move me now.
Dan E. Burns, Ph.D., is the father of a 26-year-old son on the autism spectrum and the author of Saving Ben: A Father's Story of Autism. Through his dba, Appleseed Ventures, Dan empowers parents to organize vocational and residential communities where their adult ASD children and friends can live, work, play, and heal.
Where will our ASD kids work? Adults on the spectrum are 80% unemployed or underemployed (Easter Seals). The launch ramp to the working world is still under construction, and job opportunities haven’t kept pace with the need.
One solution: parent-driven microenterprises – job programs for our kids. Here’s a project I’m working on: a hydroponic wall garden constructed from recycled materials. It includes a water recirculation system, a wine bottle grow-light, and a resident goldfish. The garden can be populated with aromatic plants, anti-fungals such as oregano, anti-inflammatories, and fresh herbs like peppermint and parsley to help soothe damaged guts and calm restless sleep. Teens and young adults on the spectrum can manufacture, sell, and ship wall garden kits. They can collect recyclable materials, craft the components, package the kits, and create advertising art and IT support. It’s a project broad enough to engage the interests, talents, and abilities of teens and young adults up and down the spectrum. Appleseed Ventures will pre-sell ten kits, build twenty, and ramp up from there.
First, the prototype. For a glimpse of this work in progress, take a look at Wall Garden Wizards Storyboards:
Wall garden work will not cover everyone’s room and board … but this project and others like it could qualify our young adults for a future federal program to help fund their services. One model is the CLASS Program -- Community Living Assistance Services and Supports -- a little-known provision of the Affordable Care Act, drafted to establish a national, voluntary insurance program for long-term care. To qualify for benefits, a teen or young adult would pay as little as a $5/month and earn at least $100/month for three years. The federal benefit: around $2000/month (plus or minus $500/month) for life.
Managing Editor's Note: We realize our readers will not be able to attend this event as a rule. However, as our kids age and we start planning for their futures, I can promise you that the Austin Texas model below should be required reading for all. Thank you to our Contributing Editor Dan Burns, himself father to an adult son with autism, for his tireless work in the brave new frontier - aptly leading the way in Texas.
Overview and purpose
Appleseed Ventures and AIM Academy are hosting a get-together in Bastrop, near Austin Texas, on the weekend of Sept. 20-22 for autism families, real estate developers, and financiers, and autism advocates. The purpose is to cultivate a network of resources for parents who seek to create living, working, playing, and healing communities for their adult children on the ASD (autism) spectrum, and to exchange ideas for a pilot community of ASD adults that is self-originating and self-sustaining.
Agenda and Program
The get-together will run from 5:00 PM Friday, September 20 through until 12:00 noon Sunday, September 22. We’ll gather Friday at 5:00 PM around the pool at Quality Inn in Bastrop, caravan to the historic district, take a walking tour of this Victorian frontier city, and reconnoiter for hand-crafted ale at the Bastrop Brewhouse. Dinner is at the Brewhouse Restaurant, at Anita’s, or at your choice of one of the dozen top-ranked restaurants in old downtown Bastrop.
Saturday morning at 8:00 we’ll convoy to McKinney Roughs Nature Preserve for a hike through Lost Pine trails famous for scenic views of the Colorado River.
At 10:00 on Saturday we’ll settle in for the centerpiece of the weekend: our Bridge to the Future Roundtable hosted by AIM Academy and Appleseed Ventures. This is an open, audience-participation event. If you can’t come to anything else, come to this! Our featured guest presenters, Diane Belnavis (Juniper Hill Farms) and Cathy Boyle (Autism Housing Pathways), whose work has been featured in Age of Autism, are journeying from Pennsylvania and Boston to share their experiences/successes in housing and employment for our adult children. Diane, Cathy, and other presenters will help develop templates for creating similar success stories in Texas and beyond.
After lunch on Saturday we’ll open our Think Tank: opportunities for discussion and networking in comfortable air-conditioned surroundings at the Special Events Science Center McKinney Roughs Nature Preserve. Bring your ideas and questions for transition, housing, and jobs!
At 3:00 PM we'll have tubing outfitted courtesy of the Bastrop River Company. Bring swimsuits. Tubes and lifejackets provided free.
Join us at 6:00 PM for Saturday night dinner at the Bastrop Brewhouse Restaurant, overlooking a scenic bend in the Colorado River and featuring live music and local cuisine. Bring your own instrument or purchase an inexpensive kazoo from LarryLand Music next door and join “Pickin’ on the Porch” (anybody can play) at the Brewhouse for a good time.
Sunday? An optional tour of possible properties in Travis, Bastrop, and Lee counties for establishing a safe, supportive community for our adult children with autism.
Dr. William J. Walsh is an internationally recognized expert
in the field of nutritional medicine. He earned a Ph.D. in chemical engineering
from Iowa State University. He’s authored hundreds of scientific articles and
reports, and he directs physician training programs in Europe and Australia.
Working at Argonne National Laboratory in Chicago, he organized a prison
program researching the biochemical causes of violent behavior, and he
developed biochemical protocols to treat behavioral disorders, ADHD,
depression, anxiety, schizophrenia, Alzheimer’s, and autism. I’ve been talking
to him about his new book Nutrient Power,
where he predicts that nutrient therapies will revolutionize the field of
mental health. Our discussion today centers on autism and violence.
DAN: In a recent
series of mass murders in Connecticut, Colorado, and Norway, we see young men who
either carry or are presumed to carry an autism spectrum diagnosis. Families of
ASD children and adults are deeply concerned. Do individuals with autism have a
higher risk of psychopathology and violence later in life? Where is the silver
lining, if any, around this cloud?
BILL: There are many challenges and concerns regarding
persons in the autism spectrum, but this is not one of them. The school shooter
in Connecticut was incorrectly identified as autistic in early media reporting.
The Colorado movie assailant clearly had experienced a schizophrenia breakdown
prior to his crime. The Norway killer apparently suffers from a delusional
disorder, not autism. Prior to clinical work with 10,000 behavior-disordered
patients, I was a prison volunteer and ran an ex-offender program for hundreds
of parolees released from Stateville Prison. To my knowledge, I’ve never met a
violent criminal with a history of autism. I’ve evaluated 6,500 autism patients
over the years and the most cases involving violent behaviors were adults who
had never received biochemical therapies until adulthood and had developed
mental retardation. I believe ASD persons need antioxidant supplements
throughout life to protect them from neurodegeneration.
DAN: In his book Dyslogic
Syndrome, published two years after his death, Bernard Rimland argued that
due largely to “brain cripplers,” including pesticides, heavy metals, and
over-vaccination of infants, “We’ll soon be faced with a biological epidemic
that goes beyond autism to include thousands of young predators who rape, rob,
and kill without reason, mercy, or awareness of the consequences of their
actions.” Those are Dr. Rimland’s words, not mine. Comment?
BILL: As always, Dr. Rimland was right. He was generally
right about everything and he was absolutely right in this area. We know
environmental “brain cripplers” are responsible for the increase in autism
incidence. However, an important question is: “What happens to brain-damaged
persons who escape autism? I’m sure the answer is higher incidence of mental
and physical disorders, including higher incidence of violent crime.
DAN: You’ve said that
people with anti-social personality disorder (ASPD) have a lot of the same
biochemical abnormalities and epigenetic errors that you see in autism.
BILL: I’ve tested more than ten thousand violent children and
adults, including hundreds of ASPD persons like Charles Manson and Henry Lee
Lucas who are often called sociopaths or psychopaths. Autistic persons and ASPD
criminals both exhibit undermethylation, toxic metal overload, OCD tendencies,
socialization deficits, and evidence of epigenetic causation. However, the
similarity ends there and the two groups exhibit strikingly different
characteristics. For example most sociopaths have excellent verbal skills and
were never plagued by food sensitivities, immune problems, yeast overgrowth,
etc. The greatest difference is in behavior -- more than 75% of sociopaths will
have a history of a criminal arrest whereas the autism population has a very
low crime rate.
“It’s becoming quite clear to more and more of us that
autism is not genetic, but epigenetic.” So says William J. Walsh, who received
a Ph.D. in chemical engineering from Iowa State University and is an expert in
nutritional medicine. In the 1970s, he collaborated with the renowned Dr. Carl
Pfeiffer, a pioneer in schizophrenia research, and went on to develop nutrient
protocols to normalize brain chemistry in patients with behavioral and
personality disorders, ADHD, schizophrenia,
and autism. Walsh’s new book, Nutrient
Power, is subtitled Heal
Your Biochemistry and Heal Your Brain.
I asked Bill what has happened in autism research since the
late 1980s when he became associated with Dr. Rimland, founder of the Autism
Research Institute. Here’s what he told me.
BILL: “When I first connected with Bernie, a wonderful
inspiring man, he realized that I’d seen more autistic patients than anybody in
the world, eventually six thousand five hundred. More importantly, I had the
world’s biggest chemistry database for autism. I’d already organized a prison
volunteer program to study the biology of prisoners and ex-offenders,
researching the causes of their violent behavior. And the first thing Bernie
and I realized was that autistic children – ASD spectrum kids – have far more
severe chemistry, lab results farther outside the normal range, than criminals.
“Bernie asked me to come to some of his think tanks and give
information. No one was surprised when I reported that ASD kids had B6
deficiency and elevated toxic metals, especially mercury, cadmium, and lead, plus
high copper and low zinc. The surprise was that more than 95% of kids who had
autism were undermethylated. Following that think tank, Jon Pangborn launched a
study of how disruptions in the methylation cycle are consistent with ASD
symptoms. Eminent methylation scientists Jill James and Richard Deth took up
the challenge. We now know that undermethylation is a distinctive feature
of ASD.”
Dan: Why did you
develop the Epigenetic Theory?
BILL: “In the history of science, progress has often been
hastened by the development of theories that attempt to explain the mechanisms
of poorly understood phenomena. Then, over time, as new information comes in,
the model can be honed and improved. We needed a new theory to account for the
effect of environmental toxins on gene expression. That’s why I developed the
epigenetic theory of autism.”
DAN: What’s the
difference between genetics and epigenetics? My understanding is that genetic
theories of autism have not been very helpful to date.
BILL: “That’s right. Genetic therapies – trying to change
DNA that’s gone awry in kids, with Down Syndrome, for example – have been a
washout. They haven’t led to much of anything. But the early research on
altering epigenetic deviations has been really promising. And I think that’s
the hope for the future.”
DAN: So what is
epigenetics?
“Epigenetics is the natural process of gene regulation that
is established in the early days of gestation in the womb. A severe
environmental insult later in life can either turn off a necessary gene or turn
on a damaging gene, resulting in a disorder that can persist for years.
“We know that autism runs in families but violates classical
laws of genetics. We know that in identical twins, if one of them develops autism,
it’s more than sixty percent likely that the other will too. However, it’s not
a hundred percent; so it’s not the DNA, not the genome. That means that
environmental insults must be involved.”
DAN: How can
environmental insults lead to autism without altering the genome?
BILL: “A gene has only one job, and that’s to make a
protein. We have identical DNA and identical genes – the same cookbook – in
every cell of our body, but every tissue in our body needs a different
combination of proteins. How to make that happen? Methyl groups, which are
basically groups of carbon atoms with some hydrogen attached, act like
bookmarks. They tell our metabolism where to start reading the cookbook and
where to stop. Methyl groups attach to certain parts of DNA to regulate whether
a gene is turned on or turned off. So they program the DNA and determine which
proteins are expressed in each tissue.”
I opened the prison ministry box, first time, and found my
name on your file. I expected maybe a murderer or a drug dealer, not a transgendered
Christian minister re-incarcerated for possession of a firearm. Anyway, you’ve
been assigned to me, your volunteer pen pal.
I know that there are many ways to be a prisoner. I have a
25-year-old son, Ben, severely autistic. My experience as a single father and
caregiver opened my heart to the pain of the least, the lost, and the lonely. I’ve
learned that some of the “least” have what the world needs most: the gift, as
Jean Vanier says, of leading us gently into the depths of our own hearts, there
to find patience, acceptance, and love. After reading the letters in your file,
I believe you have that gift.
There’s another connection, too. Last summer I helped found
and facilitate AIM Ranch, a residential campus for young adults with autism.
One of the campers, a 21-year-old nicknamed Zero, told me that he’d been in
every mental hospital, juvenile detention facility, and group home in the
vicinity of Dexter, Missouri. Zero’s dad, a professor of agronomy and plant
pathology, wanted him to be a missionary, but that didn’t work out so well. In
fact, with one important exception, almost everything Zero tried -- to get a
driver’s license, sustain a friendship, get and hold a job – didn’t work out so
well for him.
My first night on duty at AIM Ranch, I was working on my
computer in the common area when Zero passed through on the way to the kitchen,
dressed for bed.
“I’m gonna kill myself tonight,” he said. “Yep, tonight’s
the night.”
“How are you going to do that, Zero? Rope, knife, gun,
pills?”
“I’m gonna slow down my hawt until it stops.”
I could have called Shoal Creek and had him taken to the
state hospital, but I’d seen the term astral
projection in his email headers, and I had my doubts. “So you’re gonna stop
your heart, leave your body, and come back a better person?”
“I’m not comin’ back.”
“Leave your feet sticking out the end of the bed,” I should
have said. “Tomorrow morning I’ll tickle your toes. If they don’t twitch, I’ll
call 911 and tell them to dump your body in the creek. We have another camper
waiting for your bed.”
Zero survived the night, and so did I … but not without
checking on him every few hours.
As the summer wore on I became intrigued by this smart,
funny, engaging young adult who seemed to have so much going for him, but who couldn’t
pull his life together or make anything go right for long. Why couldn’t he live
independently? The camp supervisor summed it up: “There is only one reality,”
she told him, “and you aren’t in it.” Zero’s tenure at AIM Ranch ended in chaos
under threat of violence. He was taken into custody and is serving a sentence
in a state-supervised ward.
My heart goes out to Zero. I’ve continued my research into
autism and psychosis, and discovered that he and Ben have a lot in common: what
Dr. Bernie Rimland, founder of the autism recovery movement, called “dyslogic.”
Both Zero and Ben are challenged to think logically, plan for the future,
control aggressive impulses, learn from their mistakes, and understand the
consequences of their actions. And if Rimland’s associate, brain researcher William
J. Walsh, is right, Ben and Zero share a similar biochemistry. I’ve also
learned that there are many people like Zero in our jails, mental institutions,
homeless shelters, and prisons. Where, under different circumstances, Ben could
be too. And that’s why I’m writing to you, Johnnie. I hope to learn how better
to help my son.
One minute early, at 9:44 AM on Wednesday May 22, 2013, Dr. Andrew J. Wakefield’s attorneys fanned to the front of the wood-paneled courtroom, facing the three benched, black-robed, justices. Andy was suing Brian Deer, Fiona Godlee, and British Medical Journal for slander. They had accused him of fraud. But the appeal today was not about fraud or slander; it was about jurisdiction. Where will the libel case, if and when it is finally heard, be tried?
Venue is a key to the outcome. In England, Brian Deer, the pharmaceutical industry’s attack dog, has in effect a government-issued license to smear, libel, and slander. His job is to defend the reputation of the British government and of the media establishment that hired him. So if the trial were held in London, Deer and BMJ would be wrapped in the cocoon of the power elite. On the other hand, if Wakefield and his attorneys put Deer in front of a Texas jury, Deer’s paranoid fantasies would be on full display. That would be a nightmare for Fiona Godlee and British Medical Journal (BMJ). They are fighting tooth and nail to prevent it.
But the BMJ attorneys made a serious error. At the heart of today’s issue was a jurisdictional Catch-22. If you plead with a Texas court to do something for you, you implicitly recognize the jurisdiction of the court. But what if you go to court to challenge its jurisdiction?
In tag games, if you say "King's X" and hold up your hand with the first two fingers crossed, you’re safe because the game is suspended. In Texas law, the BMJ attorneys could call a King’s X by requesting a “Special Appearance” solely to dispute the jurisdiction of the court. The snare wouldn’t spring as long as they followed the rules.
The rules, however, are strict. No fair asking the court for rulings before the Special Appearance; no fair pressing your case or making additional pleas and claims. The jurisdiction issue must be settled first. The BMJ attorneys, however, got in a hurry. They descended on Texas like a tornado. They filed an anti-SLAPP motion, distributed it to the news media, and made other pleas and claims prior to jurisdiction. They didn’t cross their fingers. They broke the rules.
Managing Editor's Note: We ran this post by Dan Burns last March. Here it is as again as a complement to the post we ran yesterday, Andy Wakefield's Day In Court.
By Dan E. Burns
This is Chapter One in a series of occasional dispatches from An
Independent Me, a charity for ASD adults on the front of the autism epidemic.
Read the PROLOGUE HERE.
Zero and I stomped down the parking garage stairs near the
Travis County Courthouse, footsteps ricocheting through the concrete ramps. Above us, the courthouse stood like a stone
sentinel, caressed by shadows of summer foliage, live oaks and panicles of
crepe myrtle, this July day in 2012.
The hearing was about jurisdiction. Dr. Wakefield was suing
BMJ – the British Medical Journal – for
libel. Hack writer Brian Deer, commissioned by the Sunday Times of London, had called Dr. Wakefield a fraud; and Fiona
Godlee, editor of the BMJ, reprinted
the libelous Times article,
embellished it, and profited from it in promotions throughout the United
States, including Dr. Wakefield’s home state of Texas. Would the lawsuit play
out in a Texas courtroom, or would the proceedings be remanded to England, home
base for the libelers? “Mr. Wakefield has been found unfit to practice,” the
BMJ team argued. “Why should a Texas court decide what has already been
litigated in England?” Beyond that today rumbled the larger question: Who is
the fraud, Wakefield or Deer?
I remembered a scenario Dr. Wakefield had created for me,
first time we met. “Imagine a village,” he said, “where young adults with autism could live and work, enjoy life,
continue to heal, and give back to society. Imagine the residences, the clinic,
restaurant, gift store, microenterprise center, the gardens, the wellness
center for conventions and outreach. Hang a sign on the gate that says ‘Autism
Village.’ Now come back in thirty years. The village is abandoned and the sign
is rusty, swinging in the wind, because the epidemic has ceased to exist. That’s
the future I’d like to see. Let’s make it happen.”
Our ASD kids turn 21 or 22 and the school bus stops coming, “student
services” are gone and social services dwindle to a trickle, but life goes on
for them. How independent will your adult
child be? And what happens to our kids after you and I leave the planet? The good
news: creative residential options are springing up around the country. Here
are some ideas for creating live/work/play situations and environments that go
beyond traditional group homes and could outlast us and our at-home care.
Diane Belnavis. Buy
an abandoned house on a cul-de-sac and rehab it. Rent bedrooms to your ASD
friends, who pay out of their SSI/SSDI and housing choice (Section 8) vouchers.
If vouchers are not available, share with a housemate to offset costs. Your
renters hire their own support staff as needed, so you’re off the hook. Your
job is to provide vocational opportunities and extra income through home-based microenterprises,
horticulture, or job carving. For example, you might grow vegetables and share
a stall at a farmer’s market, or partner with a retirement village to provide
painting, maintenance, or lawn care service – a job that is often done at
cash-strapped senior centers by prisoners – in exchange for cash stipends for
your guys. Enrich your day program by holding weekly pot-luck lunch get togethers
– or a get together plus Bingo. Invite other DD folks in the area to join you
for lunch and bring their support staff as guests. Service clubs and church
groups typically come loaded with ideas for educating, employing, and
entertaining your guys. For more enrichment, partner with local charities,
sororities, and fraternities for outings to parks, nearby cities, and
recreational centers. Properly nurtured, your unlicensed “not-a-group-home” can
evolve into an attractive, vibrant, mutually supportive community. To spice
things up, buy and rehab another house on the same street, and create a
microboard to run it when you enter your dotage. You’re not licensed and not
accepting Medicaid, so Olmstead restrictions don’t apply. For a shining KISS (Keep
It Simple) example, see www.juniperhillfarms.org
Inspired by Cathy
Boyle. At age 18, enroll your child on the waiting list for food stamps, a Section
8 rent voucher, and a Medicaid waiver. Use a portion of your child’s SSI/SSDI to
offset your own income, which you invest until your child pops to the top of
the wait list. Use your investment to make a down payment on a house
($400/month for a ten year wait = about $50K plus return on investment). Lease the
house to a service provider who will bring in more ASD guys. Their rent pays
the lease which pays the mortgage and most of the cost of services, so your monthly
out-of-pocket costs are minimal. Because you’re the owner, you’re the boss,
which is the way you want it for your child. For more ideas, go to http://www.autismhousingpathways.net/
This is Chapter One in a series of occasional dispatches from An
Independent Me, a charity for ASD adults on the front of the autism epidemic.
Read the PROLOGUE HERE.
Zero and I stomped down the parking garage stairs near the
Travis County Courthouse, footsteps ricocheting through the concrete ramps. Above us, the courthouse stood like a stone
sentinel, caressed by shadows of summer foliage, live oaks and panicles of
crepe myrtle, this July day in 2012.
The hearing was about jurisdiction. Dr. Wakefield was suing
BMJ – the British Medical Journal – for
libel. Hack writer Brian Deer, commissioned by the Sunday Times of London, had called Dr. Wakefield a fraud; and Fiona
Godlee, editor of the BMJ, reprinted
the libelous Times article,
embellished it, and profited from it in promotions throughout the United
States, including Dr. Wakefield’s home state of Texas. Would the lawsuit play
out in a Texas courtroom, or would the proceedings be remanded to England, home
base for the libelers? “Mr. Wakefield has been found unfit to practice,” the
BMJ team argued. “Why should a Texas court decide what has already been
litigated in England?” Beyond that today rumbled the larger question: Who is
the fraud, Wakefield or Deer?
What
happens when an irresistible force meets an immovable object? I whipped my red
Honda SUV out of the driveway, loaded with ASD kids, spewing gravel, and headed
west on Farm to Market Road 1431, gateway to the hill country west of Austin.
“We’re
gonna die!” screamed Zero, pulling his cap over his mullet. He was sitting
shotgun, navigating with my iPhone. There were five of us in the SUV, teens and
young adults heading for Home Depot and garden seeds. Behind us near the corner
of Bull Run Road was AIM Ranch, our freshly-opened summer camp, providing
rewarding and individually challenging activities, and hopefully jobs, for
adults 18 and over with Autism Spectrum Disorder.
I punched
into the traffic stream and switched on the Beatles All You Need Is Love.
Ben, my 25-year-old son, jammed his fingers in his ears. Hyperacusis. “I don’t
agree with that song,” said Jed, a shaggy blond kid who dominated any space he
occupied just by sitting in it. Jed had come to AIM Ranch to shadow a
veterinary technician for two days. “What else do you need?” I asked. “Goats.”
“Hey,
li’l critter,” screeched angel-faced Polly, picking up on the animal theme. She’d
collected dozens of beaded necklaces and wore them all at once. “I want you to
spell mouse.M-O-U-S. But what's on the end? A tail! Hey,
hey, hey …”
“Annoying,”
said Zero. He’d been institutionalized since age 11. “Because of my belief
system,” he explained. And a prescription drug overdose. His dad wanted him to
be a missionary, but Zero believed in reincarnation, and the sooner the better.
At 21, he hadn’t connected with a competitive job. AIM was his last chance.
"If he can't make it here," his dad said, “it’s tough love, the
streets."
“Look on
the bright side,” said Zero. “At least there’s something to worry about.”
I just
kept the nose of the SUV pointed for Home Depot. It was Day One Hour One at AIM
Ranch, and I’d never been on board with anything like this cargo of kids. What
did I expect? Certainly not a second family. Certainly not to fall in love.
Dan E. Burns, Ph.D.,
facilitates planning, vocational programming, and funding for An Independent Me
(AIM Ranch), a campus in the Austin, Texas area for teens and young adults on
the Autism Spectrum, www.livingwithmeaning.org. This
is the first in a series of occasional dispatches from the front. AIM
Ranch is expanding and has openings for two additional residents. Call (512)
528-5485.
If we are winning the war against the autoimmune plagues,
why does it feel so much like losing? Twenty-two years into the autism epidemic
the parents of vaccine-injured children are like the rebels in Syria: outgunned,
isolated, and largely ignored by the rest of the world. We’ve won some battles,
HERE,
but we have not yet been able to topple the pharmaceutical establishment and
its enablers in medicine, media, insurance, and government.
The delay is economically disastrous. If the ASD epidemic
ended today we would still have the cost of caring for the already afflicted. If
prevalence continues to increase at 10% per year for another 22 years, one in
ten 12-year-olds will be on the spectrum, and services and supports for our
disabled adults will surpass the cleanup cost of two Sandy-scale hurricanes per
year. Add to that other autoimmune disablers — asthma, allergies, and ADHD for
starters — and preventable chronic diseases will force a major cut in the US defense
budget or bankrupt us.
Why can’t we end this nightmare now? We know enough about
the causes – toxins, both chemical and biological — to bend the curve down and
start reducing prevalence. But we’re stuck. To shake loose, let’s try looking
at the epidemic from a financial perspective, using insights from the industry
I’m most familiar with, oil and gas.
As a teen growing up in Oklahoma in the 1960s, I asked Uncle
Tever how to make money in the oil business. Tever was a petrochemical company
vice president and a big picture visionary. He rode a private jet to New York
and back to Tulsa every week. “Go down to the filling station and buy a quart
of oil,” he said. “Bury it. When the price goes up, sell it.”
Twenty years later, when I was Executive Speechwriter for a
Texas oil company, I too saw the big picture. When oil companies bid to buy
each other, they’re not looking just at the things you and I see: refineries,
brands, people, gas stations. Nor do they base their bidding primarily on current
sales, customers, and cash flow. Instead they look first at “reserves” – oil,
gas, and coal – which are safely underground. Like that quart of oil I didn’t
buy. I also learned that wealth, in the oil business, is all about Wall Street,
and Wall Street is all about future sales: the price of oil, coal, and natural
gas multiplied by reserves.
Like any publicly traded business, pharma exists to create
wealth for shareholders. Where is the wealth of the vaccine manufacturers
Merck, Glaxo, Sanofi Pasteur, Pfizer’s Wyeth, Novartis? Partly in their
products, their vaccines, their patents, their company-bought-and-paid-for
research and publications. As well as their current sales and cash flow. But for
the most part, it’s not.
It’s in their reserves. Our children and grandchildren.
Think of unborn children as barrels of oil in the ground. Their
birth rate inflates the value of Merck and Glaxo stock, and as they grow into
toddlers they help make CEOs Kenneth C. Frazier and Sir Andrew Witty very, very
rich. Not just with current pharmaceutical sales (including prescription drugs
and vaccines), but with the prospect of future
sales. In other words, each pregnant, American Academy of Pediatrics (AAC)-compliant
mom leverages the stock price of Merck et
al. And stock price is where the unseen, unimaginable wealth and power of
Pharmageddon reside.
Let’s look at how this works.
Each and every baby born in the USA is recommended for
Hepatitis B immunization immediately, Day One, the birthday shot. And there are
10,800 babies born in the US every day. Merck and Glaxo split the market
between them. Think they don’t count the babies? Imagine “Today’s Newborns”
total flashed on a trampoline-sized monitor in the executive dining room and updated
minute by minute, like election returns. Because at $22.66 per dose, the average
private sector price the hospital pays to Merck and Glaxo’s globally integrated
distributors for their Hep B vaccines – CEO Ken Frazier and his British counterpart Sir
Andrew Witty get an estimated $244 thousand dollars from the birthday shot flowing
into their company coffers every day.
Congressman Dan Burton
2308 Rayburn House Office Building
Washington, D.C. 20515-0001 October
16, 2012
Dear Congressman Burton,
I appreciate the work you are doing
on behalf of our children with autism. I’m writing regarding Community Living
Assistance Services and Supports program (CLASS Act), a Title VIII component of
the Patient Protection and Affordable Care Act. The Act is supposed to provide
long term care for our disabled adult children, including adults with autism.
In her letter to Congress, October
14, 2011, Secretary Sebelius declined to implement the CLASS Act because it did
not meet actuarial requirements and, as she wrote "I do not see a viable
path forward for CLASS implementation at this time." Yet as the Secretary
acknowledged in that letter, the need for long-term care for developmentally
disabled adults has not gone away.
I’m working to create a national
program for LTC (Long-Term Care) community living services and supports that
fills the vacancy left by the CLASS act. It might be a reworking of the Act, or
something else entirely.
My question: Which of our elected
representatives in Washington has made autism issues his or her own? Who will
follow up on the work you are doing?
Macbeth shall never vanquished be until Great Birnam wood to high Dunsinane Hill Shall come against him. – Witches prophecy, Macbeth, IV.i
I asked Ruth Christ Sullivan in a radio interview, “What would you do if you had another 30 years to live?” Ruth is the eighty-plus-year-old founder of the Individuals with Disabilities Education Act (IDEA), which guarantees a free and appropriate education for our disabled kids. She said, “I would go back to Washington. And I would make residential care for our adult children a Federal entitlement, not a Medicaid waiting room.”
Great idea; thank you, Ruth. Then she passed the torch: “You do it.”
So I journeyed to Washington, DC, carrying my torch through the Rayburn House Office Building, Dunsinane, bleak and regular as an egg carton. My plan was to roam the halls, top floor to bottom, knocking on Texas Representatives’ doors. I tried to imagine myself a prophet in the corridors of power, Jonah on mission in Nineveh; but the closed doors, identical as post office boxes, reminded me more of those kids’ books where you lift the flap to see the surprise behind it.
Here’s a Texas door. “Repent!” I cried, lifting the flap. The young staffer, who was alone and had not yet opened his mail, offered me a cup of coffee.
My message was this. “In Texas, we have a wave of disabled children on the autism spectrum graduating from high school and headed for the streets. Most of them will need support all their lives. It costs $100K to $160K per year to house a disabled adult in a state institution. It costs half that to support him in a traditional group home. Through our pilot project An Independent Me, a residential and vocational center, the Autism Trust USA is modeling how that support might work to lower the cost and improve the quality of life for these young adults in a community, village, or campus setting.”
“I’m listening,” said the note-jotting staffer.
“Let’s say we get the cost down to $60K per year,” I went on. “One-third of that comes from enterprise income, because with the support of Texas Department of Assistive and Rehabilitative Services we are putting these young adults to work in micro-enterprises, self-employment, and jobs. One third comes from private pay -- trust funds, insurance, family savings, and fundraising. The last third, that’s where we’re asking for help: permanent, reliable, Federal funding for long-term residential support. Give us the tools, and we will build these communities.”
Facebook rumors circulated that the café was “demonic,” but that didn’t stop an overflow crowd from enjoying “Give Autism A Chance” at family-friendly Spider House in the keep-it-weird city of Austin, Texas. Our teens fit right in at this funky eclectic coffee house. The goal was to demonstrate that young adults with Autism Spectrum Disorders can contribute to the workforce and give back to society. And in this laid-back campus refuge, they did. Patrons only joked with him when my son, Ben, swiped a finger through the whipped cream on somebody’s waffle cake.
How did it go? Lainey Melnick writes, “Thank you all for a delightful event. My son, Daniel Freeman, had a wonderful time and is really hoping it leads to some new opportunities.” And maybe now he’ll get them. Jennifer Kaut, Autism Employment Specialist with Texas Rehabilitative Services (DARS), was there to give Ben and other job-seeking young adults a second look. “As an ASD mom,” she said, “my goal is to revolutionize the transition to jobs statewide.”
Here’s how Leslie Phillips, Houston Chronicle blogger, ASD mom, and Canary Party supporter experienced the event: It was a brilliant weekend in Austin for the US launch of Give Autism a Chance. Two hard-working dedicated teens pulled off the event with help from some parent advocates, capable young adults with autism, and visitors from UK including Autism Trust founder Polly Tommey. Dan Burns, board chair of Autism Trust USA, was also on hand with his wife Sue, and adult son Ben. (Read more at Leslie's Chron blog.)
Here’s video of Ben clearing tables:
Here’s local video news coverage coverage of “Give Autism a Chance.” (Note the video is on FB and might not be accessible to all readers.)
The surprise for me was how much we enjoyed our kids. In a restaurant. The surprise for Ben’s mom: “I was astonished at how much he could do.”
Dan E. Burns, Ph.D., is Adult Issues Liaison for AutismOne and the author of Saving Ben: A Father's Story of Autism. Burns is developing the Autism Trust USA, modeled on The Autism Trust (U.K.) and focused on the creation of new campus communities where adults with autism can work, live and improve their skills and talents in a creative and supportive environment.
Will it be “Hunger Games” for our kids as adults, or can we bend the future? After an unsuccessful interview with Texas Department of Assistive and Rehabilitative Services (DARS), which is supposed to help find work for disabled adults, my son Ben tore up his Jobs People Do book. Today as a 24-year-old adult he’s stuck in dayhab. His eyes still ask, “Please unlock the door. Please open the future.”
Autism Trust USA, in conjunction with Autism Trust (UK) and An Independent me (AIM), is planning to do just that.
On April 22, young adults with Autism Spectrum Disorder will serve lunch to guests at the Spider House Café in Austin, Texas as part of an international ‘Give Autism a Chance’ campaign. The goal: to prove that they can live productive lives and work within a wide range of professional capacities. DARS will be there watching, and so will ASD-friendly employers in Texas and beyond.
Gary Moore, co-founder of nonPareil Institute in Dallas, tells a story of unlocked talents and newly-opened doors. “Our student instructor is on the spectrum,” he says. “Until we trained and hired her, she was throwing newspapers. Now she’s heading a team that creates and sells apps on iTunes. All our kids with ASD have hidden skills and talents. But most employers can’t see past the autism. They haven’t figured out how to identify and take advantage of their gifts. We’ve got to change that.”
Managing Editor's Note: We're proud to welcome Dan Burns as our newest Age of Autism Contributing Editor. Dan has an adult son with autism named Ben, and his perspective and writing style are a great addition to our content. Welcome, Dan.
By Dan E. Burns
Project Draft 13
I will show you fear in a handful of dust
(T.S. Eliot, The Waste Land).
We stared at it, my Public Relations colleagues and I, perhaps a little too long. Projected on the wall of the Situation Room stood the Agent Orange distillation column, a 50-foot tall steel vessel reigning over a graveyard of oil drums labeled “Diamond Shamrock Corporation” and “Hazardous Waste.”
Agent Orange is not an ingredient in vaccines. But what happened – or didn’t happen – in the Situation Room has a lesson for us, the parents of vaccine-injured children.
In 1983, Vietnam vets from Operation Ranch Hand were suffering from neural and blood disorders, miscarriages, leukemia, and cancers of the prostate, lung, and liver. They were marching, waving signs, and pointing fingers. At us. Allegedly, the damage came not from Agent Orange per se, but from 2,3,7,8-tetrachlorodibenzodioxin, a contaminant produced during the “cooking” or fractionation process when the temperature in the tower rose a little too high for a little too long. As it did in the Diamond Shamrock Ironbound plant. If the EPA is right – the claim is disputed HERE – dioxin is one of the most potent carcinogens known to human kind.
Diamond Shamrock mounted a vigorous defense. “We can’t cure anyone’s cancer,” said the General Counsel. “What’s done is done. If we move one shovelful of dirt more than required, we open ourselves up to additional liability. That would just spread the mess.”
My colleagues in the Situation Room were decent, caring people. “Chipper,” to my right, recruited and went to bat for minorities. “Lou,” to my left, our one-man brain trust, played the blues guitar and wrote protest songs light with whimsy and humor. I was Executive Speechwriter, raising two college-bound children. After an underpaid career in academia, I needed this job.
Lou had researched the issue for years. “In jungle warfare,” he said, “G.I.s were exposed to a host of tropical pathogens, fungi, protozoa, unknown viruses, and biological agents coming at them through novel vectors on all sides. We don’t know what caused their chronic fatigue, birth defects, and cancers. Diamond Shamrock operated under mandate from the government, and our actions were safe, proper, and legal.”
‘That’s right,” chimed in the General Counsel. “We have a fiduciary responsibility to our shareholders. That’s why we’re here today.”