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Dispatches from the Front - The Revolution: A Call to Action

Ben and danDispatches 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.”

Ben and I had come a long way. I remembered an incident from age two. He was and was running from wall to couch in the doctor’s waiting room, flinging himself on the cushions and laughing, twisting as if immersed in a tank of piranhas, upshifting from giggle to scream. I grabbed him, made eye contact, distracted him for a few seconds, but the receptionist wanted a form filled out. Perhaps she did not understand that if I took my eyes off this child long enough to write my name he would have his arm in the piranha tank. I picked up a pen. He darted to the bookcase. The other patients pretended we weren’t there, but they were not fooling me. No one can fail to notice a child who is screaming and tearing the pages out of a Dr. Seuss book. I locked my hands on Ben’s forearms and crossed them over his chest. He was biting me. The receptionist asked me if my contact information had changed. Yes, my name, telephone number, and email address are exactly the same as they have been for years. But I no longer live on this planet.

The doctor is forty-five minutes late.

“Mr. Burns?” the nurse says, holding the hall door open. Now she is going to try to weigh my son. It’s futile. Why doesn’t she get this? Ben screams, hits, grabs. “He weighs the same as last month,” I announce. How much that was is anybody’s guess. What difference does it make? Dr. Stansen will prescribe another round of pink, bubble-gum flavored Amoxicillan. I will need to double the prescribed amount because Ben will spit out half of it. But Dr. Stansen will keep prescribing antibiotics and I will keep experimenting with novel methods of inducing Ben to swallow it – did I mention the turkey baster? – because no one has a better idea.

The nurse locks us in the examining room, our padded cell, and I hunker down while Ben destroys the systems. He tears paper off the examining table, bangs the doctor's chair against the wall, turns the water on and splashes it out of the sink, stuffs a handful of disposable ear inspection cones in his mouth and spits them out. The nurse brings in some paperwork.

“The doctor must be very busy,” I observe.

“She had an emergency.”

This is an emergency, I think. “Perhaps we could come back some time that is more convenient for her,” I suggest.

The nurse looks alarmed. “She’ll be here any minute.”

“Yes, but Ben and I won’t.”

“Dear Dr. Stansen,” began the letter I would never send. “I understand you had an emergency. So did I. Can you imagine what I had to go through to get Ben to your office? Getting him out of the car and maneuvering through the parking garage, a kid who twists out of your grip, your hand on his collar but he still slips away, determined to fling himself over the second floor guard rail or lose himself in the labyrinth of the stairwell, who runs toward the street, who opens the nearest car door and honks the horn? Then the terror of the elevator ride, the bad elevator, the one that takes him to the doctor. Can you understand this, you and your nurse with her dangerous thermometer that he will bite and break, your impotent chart, your insurmountable scales? With preparation, I can keep Ben quiet two, maybe three minutes. Those minutes were spent long before you arrived.”

Suddenly Ben was quiet, looking at me. Why? Because I had grabbed him by the collar. I fled through the open the door of our cell and down the hall toward the emergency exit, dragging my petrified child with me. The exit was locked.

Where will I go? Who can help us?

I sat on the cold hall floor with my terrified son, weeping.

I was drawn from my memory by a voice behind me, British accent. “Dan?” I turned around to face a gentleman in a blue sports jacket, a collarless polo shirt, and jeans. Backpack on the table top beside him. Younger than I expected, he could have been taken for a post-doc student.

“Will you and your son join me?”

“Doctor …”

“Call me Andy.”

“This is Ben.”

“How old is he?”

“Twenty three. Diagnosed at age four, on my birthday.

“Looks like he’s doing well.”

“He’s a wonderful son. I wrote a book: Saving Ben. I plan to follow up with Saving Dad.”

“Yes. Parents casualties of this epidemic too, battling for their children.”

“And you’re carrying the battle flag for us. Shall we get started?”

“Go,” said Andy.

Ben sprang up. I grabbed him by the shirt, signed “sit,” turned on my iPhone recorder and asked, “What brought you here from England?”

“One, as your Autism File readers know, I lost my license to practice medicine, my reputation, and my job.”

“And two?”

“Revolutions are more likely to succeed in America.”

Well, the British should know, I thought.

Andy continued. “The medical systems in the UK and the US are broken. Vaccination has reduced communicable diseases, but one in four children is neurologically or immunologically damaged. Allergies. Autoimmune disorders. ADHD. Autism is the tip of the iceberg. We’ve seen prevalence go from one in ten thousand twenty years ago to epidemic proportions today. Within five years the it may well double. By then, we’ll see thousands of teens and young adults, many like your son, graduating high school and pouring into the streets, the emergency rooms, the jails. We are totally unprepared to care for this population.”

I was taking notes. “And the revolution?”

“The first challenge is to end the epidemic.  And we must care for our injured children, and give these young adults jobs and a safe place to live … a village where they can thrive, heal, and give back to society.”

“How?”

“By telling our stories.”

“He’s gone.” Ben. I was on my feet. Andy scrimmaged to the street exit. I headed for the boat dock and yelled an audible: “Lower deck.” At the coffee shop door I nearly bumped into Ben, eating a muffin, bewildered by the fuss. I wrapped my hand wrapped around his wrist and dragged him back to the picnic table.

“Now what?”

“Write,” said Andy. “Tell your story.  Let’s end the epidemic. Then build a village.”

“I’m just a mild-mannered professor.”

Dr. Andrew J. Wakefield settled back in his chair. “So was I.”

The author, Dan Burns, is on Facebook.

Comments

Robert Hughes

This eloquent you-are-there dispatch from the front lines of autism is one every doctor should read. When will physicians get the message? Once my wife and I waited for 2 (expletive deleted) hours for a pediatrician to waltz in to the tiny waiting room--a room that got smaller and smaller as the minutes crawled by-- where we struggled with our son. And this visit ranks only about a 6 on scale of 10 on our personal list of horrific list of doctor visits. Thank you Dan for this wonderful and real slice of autism life.

Jim McTiernan

Dan, thanks for sharing. The truth is coming. It is a matter of time unfortunately because we all know vaccine injury happens every day. Keep sharing about your son, I will do the same, though not as well.

Jeannette Bishop

So good, I couldn't stop reading, and I find I can't read it twice (at least not on the same day).

Thank you for a motivating picture!

Janet Keith

Dan, I was so touched by your personal account of your experiences with your son. My son is now 25 and functioning to a degree. The most difficult thing for me when I hear the media brushing off autism or trying to discount the tragedy that so many families are living every day is that there seems a total lack of compassion. Many people have no idea what a day in the life of a family with a child with autism is like. If they really knew, they could never be so cavalier about the cumulative damage vaccinations are having in our country and worldwide for that matter. Helping people realize the truth of living with autism could go a long way in helping people wake up from the trance of "vaccines are safe and effective". I pray your story gets out there. You certainly have a gift of expressing yourself so that others can feel what it is like to walk in your footsteps. Andy Wakefield is one of my all time heroes.....I pray every day that he is vindicated.

Benedetta

What a birthday present some 20 years ago to receive.

You tell it so wonderfully; holding my attention. This is a life time tale though, how do you pick and choose your moments -- hard.

Gary Ogden

Donna L. Yes, Dr. Wakefield is a man of uncommon moral courage, an inspiration to all, and Dan Burns has an exceptional gift for putting pen to paper. This is the best I've read in a long time.

Donna L.

Wow, this one really got to me. I had so much to get done today, and instead, spent the day in tears after reading this. Damn, you can write, Dan. I don't think I've ever read a more accurate depiction of that level of sheer desperation only an autism parent really knows, your "where will I go? Who can help us?" We're 17 years into this mess with my son, and still have not found anyone who can help us. Honestly, I don't think we ever will.

And thank you again and again, Dr. Wakefield. It somehow seems fitting that the most hellish disorder on earth ended up attracting the most courageous physician on the planet. I'm so sorry for all you've lost and all you've had to go through in just seeking simple justice for all our vaccine-damaged children.

Gary Ogden

Thank you, Dan, for a fine piece of writing. Made my day. My pitchfork is awaiting deployment.

Sun~Rose

Right there with You, relating as I'm reading. Bless You three!

And asking again- suggesting- looking into patterning -- our miracle -- www.IAHP.org The Institute for the Achievement of Human Potential

What if You could teach Ben to read?

Love,
Sun~Rose

Teresa Conrick

I thought maybe that was the case. The same for so many of us. Look for a post next week on this topic.

Thanks again to the mild mannered professors.

Linda1

"...at mozarts coffee roasters, "wired" means caffinated."

LOL. Thanks, Dan. Isn't the English language fun? :o)

go Trump

WAR is when the government tells you who your enemy is.

REVOLUTION is when you figure it out for yourself.

Dan Burns

Teresa, ben had recurring ear infections for years. Uncounted sets of ear tubes.

Dan Burns

Linda1, at mozarts coffee roasters, "wired" means caffinated.

Teresa Conrick

Dan,

I meant to add earlier, regarding this -- "Dr. Stansen will prescribe another round of pink, bubble-gum flavored Amoxicillan. I will need to double the prescribed amount because Ben will spit out half of it. But Dr. Stansen will keep prescribing antibiotics..."

Did Ben have lots of ear infections, Strep and infections in general?

Laura Hayes

Loved this, Dan. Thank you for sharing some of your experiences with us.

And to add to Bob's list of great quotes, here's one from Thomas Jefferson:

"When injustice becomes law, resistance becomes duty."

Linda1

Dan,
Not to diminish the message of your piece, but I couldn't help but notice since the hazards of wireless RFR is a concern to me - What is meant by the sign: "Keep Autism Wired"?

Peg Pickering

Dan....you are a wonderful father and an inspiration to those of us following along your very difficult path. Thank you for all you continue to do.

Andy, of course, is a hero who continues to fight the good fight for all our children.

I, too, am writing OUR story...and working on building a village for our adult children.

Hugs to you and Ben. Hope to see you soon.

Linda1

I feel like I know you, Dan, and Ben, after reading your wonderful book _Saving Ben_. Enjoyed reading this today.

Lesa Walsh

Hi Dan,
Wonderfully written story about Ben and Andy Wakefield. We've met Andy several times over the years and you describe him to a "T"! Nearly every day, I wish we had a magical crystal ball so we could see why some people with Autism have a significant degree of recovery and some do not. We have friends who've worked as hard on recovery as we have and their child doesn't make a tenth of the progress as our son has. Thank you and everyone at the AoA for all that you continue to document about Autism and Life! #IStandWithAndy!

 Teresa Conrick

Dan,

I loved this. It is beautiful, haunting, yet filled with much hope. Thank you for describing so many of our lives. We are with you.

You say you want a revolution
Well, you know
We all want to change the world
You tell me that it's evolution
Well, you know
We all want to change the world......

Maurine Meleck

well Dan, you are a terrific writer. You put just the right amount of pathos and wit in your story. It's like sugar and bitter herbs on a leafy green salad. I could read your stories until the CDC does that vaccinated vs unvaccinated study of children. Wishing you and your family the best always. Maurine

Louis Conte

Dan:
Well done. I enjoy your writing.

Bob, Thank you for Orwell: "If liberty means anything at all, it means the right to tell people what they do not want to hear"

Louis

Angus Files

Hi Dan
the magic of Autism your story is only available in Autism.

We have a most-of the time, obedient, elderly 14 year old Scottish Collie dog named Harry.Last night trying to repeat a recent new skill for Geoffrey, calling in the dog. I said to Geoffrey prior to going to bed, "call Harry in Geoffrey". Out Geoffrey goes to the open door, hands up to the mouth, hands clasped around as if he was going to holler a mile away.He takes a massive breath and shouts "go on,go Harry, come here, go Harry" and Geoffrey walks away, job done!...Head shaking, and dis-belief from myself smiling and telling myself, I should know better.. and Harry walks in looks at me tail half wagging as if to say its ok I understand.

Even the dog gets it...some humans eh!!who needs them.

MMR RIP

Dan Burns

Thanks Eileen. I look forward to seeing your story. Bob: Yes, a sea of pitchforks; a sea of stories.

Bob Moffit

“Revolutions are more likely to succeed in America.”

JFK .. "Those who make peaceful revolution impossible; make violent revolution inevitable"

Thomas Huxley: "Freedom and Order are not incompatible .. truth is strength .. free discussion is the very life of truth"

George Orwell: "If liberty means anything at all, it means the right to tell people what they do not want to hear"

Dan .. if telling the TRUTH is going to require a REVOLUTION .. sign me up .. if I have to carry the symbolic torch and pitchfork to bring TRUTH to the CDC .. so be it.

Patience (Eileen Nicole) Simon

Dan, Yes, please write your story. I am almost finished writing mine. I wish I could write as well as you do. I am taking a class at the Harvard Extension School, Story Creation, and the instructor told me mine is the first story she has seen on adult autism. I hope I will be able to find a publisher. I have 6 self-published ebooks to-date on amazon.com and bn.com, with much more historical information than provided in the recent books by journalists.

Too many people are now claiming they only got an autism diagnosis when they went to college. Zombie-faced "experts" nod in agreement at public meetings, and dare to advise parents like you and me that autism is nothing new. Then we are admonished to be more graciously accepting...

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