AGE OF AUTISM

Best of: Wakefield vs. Brian Deer, Fiona Godlee and the BMJ: Dispatches from the Front

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.”

What Happens When You're Gone? Aging Out – ASD Adults & Their Parents Need Solutions for the Future

By Dan Burns

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/

Wakefield vs. Brian Deer, Fiona Godlee and the BMJ: Dispatches from the Front

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?

All You Need Is Love: Dispatches from the Front

By Dan Burns

PROLOGUE

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.

 

Making Out with Merck

  By Dan E. Burns

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.

Long Term Care and Autism: A Letter to Congressman Dan Burton

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?

Best,

 

Dan E. Burns, Ph.D.

Chair, The Autism Trust USA

Contributing Editor, Age of Autism

Adult Issues Liason, AutismOne

daneburns45@gmail.com

Birnam Wood Comes to Autism Land

With thanks to John Stone.

By Dan E. Burns

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.”

Demonic? No, “Give Autism A Chance” in Austin.

By Dan E. Burns

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.

Warning: Hunger Games Ahead

By Dan E. Burns

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.”

The Situation Room: Autism, Vaccines, and Agent Orange

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.”