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18 posts categorized "Dan Burns"

You're Invited to the Autism Enterprise Roundtable 2014: Jobs for Autism

image from http://s3.amazonaws.com/hires.aviary.com/k/mr6i2hifk4wxt1dp/14071018/5486a3af-6863-4e78-8802-ccb9ed8d5dd1.pngUpdate: 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.

Continue reading "You're Invited to the Autism Enterprise Roundtable 2014: Jobs for Autism" »

Will Wonders Never Cease?

Signs_of_hope_39193038By Dan Burns

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 I believefaith 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.

The song is “I believe.” Here’s the premiere performance. Check it out.


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.

Autism in a Future that Works

DB workBy Dan Burns

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.

Continue reading "Autism in a Future that Works " »

AIM Academy Presents Adult Autism Living Weekend for Investors, Stakeholders

AustinManaging 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! Bastrop 3

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.

Continue reading "AIM Academy Presents Adult Autism Living Weekend for Investors, Stakeholders" »

Autism and Violence: From Newtown to Norway

Danger rough roadBy Dan Burns and Dr. William Walsh

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.

Continue reading "Autism and Violence: From Newtown to Norway" »

Autism: Tornado in the Brain

Tornado2By William Walsh and Dan E. Burns

“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.”

Continue reading "Autism: Tornado in the Brain" »

Autism Behind Bars: Johnnie B. Goode

Compassion_Will_Cure___by_kodereaperBy Dan E. Burns

Johnnie,

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.

Continue reading "Autism Behind Bars: Johnnie B. Goode" »

The Wakefield Appeal: Beast at the Courtroom Door

After the Wakefield 3rd Court AppealBy Dan E. Burns

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.

Continue reading "The Wakefield Appeal: Beast at the Courtroom Door" »

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

AustinManaging 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.”

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

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

Tombstone-your-name-here


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/

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

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

AustinBy 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?

Continue reading "Wakefield vs. Brian Deer, Fiona Godlee and the BMJ: Dispatches from the Front" »

All You Need Is Love: Dispatches from the Front

LOVE tiltBy 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

  FiveSmoothStonesBy 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.

Continue reading "Making Out with Merck" »

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

Long highwayCongressman 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

BirnamWith 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.”

Continue reading "Birnam Wood Comes to Autism Land" »

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

Spider-entrance-new

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

EmploymentopportunitiesBy 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.”

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The Situation Room: Autism, Vaccines, and Agent Orange

Dan Burns and BenManaging 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.”

Continue reading "The Situation Room: Autism, Vaccines, and Agent Orange" »

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