Autism Research Institute
Autism Society of America
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Schafer Autism Report
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Friday, November 6, 2020 Reader Supported
In This Issue:
Hundreds of Local Autism Events
The Ultimate Herbal Remedy:
Can Cannabis Improve Autism?
The debate over its risks has split political and scientific opinion in Britain. But American mother Marie Myung-Ok Lee says cannabis isn't only safe enough for her autistic son - it's dramatically improved his condition
My son, J, has autism. He's also had two serious operations for a spinal cord tumour and has an inflammatory bowel condition, all of which may be causing him pain, if he could tell us. He can say words, but many of them - "duck in the water, duck in the water", for instance - don't convey what he means. For a time, anti-inflammatory medication seemed to control his pain. But in the last year, it stopped working. He began to bite and to smack the glasses off my face. If you were in that much pain, you'd probably want to hit someone, too.
J's school called my husband and me in for a meeting about J's tantrums, which were affecting his ability to learn. The teachers were wearing Tae Kwon Do arm pads to protect themselves against his biting. Their solution was to hand us a list of child psychiatrists. As autistic children can't exactly do talk therapy, this meant using sedating, antipsychotic drugs like Risperdal.
Last year, Risperdal was prescribed for more than 389,000 children in the US - 240,000 of them under the age of 12 - for bipolar disorder, ADHD, autism and other disorders. Yet the drug has never been tested for long-term safety in children and carries a severe warning of side-effects. From 2000 to 2004, Risperdal, or one of five other popular drugs also classified as "atypical antipsychotics", was the "primary suspect" in 45 paediatric deaths, according to a review of US Food and Drug Administration (FDA) data by USA Today. When I canvassed parents of autistic children who take Risperdal, I didn't hear a single story of an improvement that seemed worth the risks. A 2002 study on the use of Risperdal for autism, in The New England Journal of Medicine, showed moderate improvements in "autistic irritation" - but the study followed only 49 children over eight weeks, which limits the inferences that can be drawn from it.
We met with J's doctor, who'd read the studies and agreed: No Risperdal or its kin. The school called us in again. What were we going to do, they asked. As an occasional health writer and blogger, I was intrigued when a homeopath suggested medical marijuana. Cannabis has long-documented effects as an analgesic and an anxiety modulator. Best of all, it is safe. The homeopath referred me to a publication by the Autism Research Institute describing cases of reduced aggression, with no permanent side- effects. Rats given 40 times the psychoactive level merely fall sleep. Dr Lester Grinspoon, an emeritus professor of psychiatry at Harvard Medical School who has been researching cannabis for 40 years, says he has yet to encounter a case of marijuana causing a death, even from lung cancer.
A prescription drug called Marinol, which contains a synthetic cannabinoid, seemed mainstream enough to bring up with J's doctor. I cannot say that with a few little pills everything turned around. But after about a week of fiddling with the dosage, J began garnering a few glowing school reports: "J was a pleasure have in speech class," instead of "J had 300 aggressions today."
But J tends to build tolerance to synthetics, and in a few months we could see the aggressive behaviour coming back. One night, I went to the meeting of a medical marijuana patient advocacy group on the campus of the college where I teach. The patients told me that Marinol couldn't compare to marijuana, the plant, which has at least 60 cannabinoids to Marinol's one.
Rhode Island, where we live, is one of 13 states where the use of medical marijuana is legal. But I was resistant. My late father was an anaesthesiologist, and compared with the precise drugs he worked with, I know he would think marijuana to be ridiculously imprecise and unscientific. I looked at my son's tie-dye socks (his avowed favourite). At his school, I was already the weirdo mom who packed lunches with organic kale and kimchi and wouldn't let him eat any "fun" foods with artificial dyes. Now, I'd be the mom who shunned the standard operating procedure and gave her kid pot instead.
I thought back to when J was 18 months old. We were vacationing on the Cape, and, although he just had the slightest hitch in his gait, I was sure there was something wrong. His paediatrician laughed. I called back repeatedly until a different doctor agreed to see us. J was taken in for emergency surgery, to remove a tumour that was on the verge of inflicting irreparable damage. Sometimes, you just have to go with your gut.
And yet, I still hesitated. The Marinol had been disorienting enough - no protocol to follow, just trying varying numbers of pills and hoping for the best. Now we were dealing with an illegal drug, one for which few evidence-based scientific studies existed, precisely because it is an illegal drug. But when I sent J's doctor the physician's form that is mandatory for medical marijuana licensing, it came back signed. We underwent a background check with the Rhode Island Bureau of Criminal Identification, and J became the state's youngest licensee.
+ Read more: is.gd/4Pgr3
• • •
Chelation Therapy Drug Found Safe
and Beneficial for Children With Autism
The Autism Research Institute calls for further investigations into the use of chelation therapy for individuals with autism
PRNewswire - Two studies published by the Southwest College of Naturopathic Medicine in the October issue of BMC Clinical Pharmacology investigated the use of oral dimercaptosuccinic acid (DMSA), a prescription medicine approved by the FDA for treating lead poisoning, and used off-label in these studies for treating heavy metal toxicity in children with autism.
In the investigations, DMSA was given to 65 children with autism (ages 3 -8 years) to determine its effects. The researchers found that DMSA dramatically increased excretion of several toxic metals, including a 10-fold increase in excretion of lead. In terms of safety, the study found that there was no adverse effect on standard safety tests, including no effect on kidney or liver function.
Of greatest interest was a surprising finding that DMSA therapy had a dramatic effect on glutathione levels. Glutathione is the body's primary defense against toxic metals, and it was very abnormal in children with autism.
Treatment with DMSA for only 3 days normalized glutathione levels for at least 1-2 months in almost all children.
DMSA therapy also had promising effects on possibly reducing some of the symptoms of autism, including improvements in language, cognition, and sociability. However, a formal randomized double-blind placebo-controlled study is needed to confirm those results.
The study was led by Matthew Baral, N.D., Chair of the Department of Pediatric Medicine and Associate Professor of Pediatrics at Southwest College of Naturopathic Medicine (SCNM) and James B. Adams, Ph.D., Adjunct Professor in the Division of Clinical Sciences at SCNM and Science Director for the Autism Research Institute.
"Toxic metals are a common problem in autism, and I have personally observed that many of my patients with autism have greatly benefited from DMSA therapy.
I hope this data answers the question that many physicians have: whether chelation is safe and effective, and clearly it's both," says Dr. Matthew Baral. "This study shows that DMSA therapy is safe and effective, and should be considered as a possible treatment for children with autism who have significant body burden of toxic metals," says Prof. James Adams.
This study was funded, in part, by the Autism Research Institute. To access the studies go to
• • •
Are Doctors What Ails U.S. Healthcare?
By Chris Baltimore is.gd/4PgeE
Reuters - Nowhere in the United States has more doctors at its beck and call than White Plains, one of the wealthiest cities in the nation.
Doctors have been flocking to the area and surrounding Westchester County since the 1970s, drawn in part by an upper-class clientele who demand top-notch medical care and have the means to pay for it. The county has one of the highest median household incomes in the nation (about $77,000 a year in 2007), and the figures soar above six digits in suburbs like Scarsdale and Chappaqua, which former President Bill Clinton calls home.
Nearly 3,000 miles (4,830 km) away, scaring up a doctor in Bakersfield, situated in California's economically battered Central Valley, is a lot harder. In fact, White Plains has more than twice the number of doctors per capita as Bakersfield, where needy patients until recently had to take a 2-hour bus trip to Fresno to see a diabetes treatment specialist.
Two decades worth of U.S. healthcare data analyzed by Dartmouth Medical School at Reuters' request shows that such regional disparities are increasingly creating a nation of health-care haves and have nots.
The research also suggests that the chasm between places like White Plains and Bakersfield is likely to grow - a point underscored by dozens of interviews with doctors and experts. That's because physicians, the data shows, gravitate toward affluent locales in the United States that already have all the medical help they need.
What's more, the Dartmouth analysis shows, clusters of doctors tend to result in higher health care costs - and, perhaps most surprisingly, outcomes aren't any better in cities with the largest physician populations.
Congressional Democrats in late October unveiled a sweeping healthcare overhaul that would transform the insurance market, extend health insurance to 46 million additional U.S. patients and levy new taxes on the rich.
The House of Representatives could vote as early as Saturday on a bill that would launch the biggest changes to the U.S. healthcare system since the creation of the Medicare health program for the elderly in 1965. But Senate action is unlikely until next year.
President Barack Obama has made reform of the $2.5 trillion U.S. healthcare industry, which constitutes one-sixth of the economy, his top domestic priority.
Yet, even if Obama gets everything he wants in his bruising fight with Republicans, stunning imbalances will remain in how the fruits of the health care system are distributed.
Access to top doctors, cutting-edge procedures and advanced life-saving technology has less to do with need and more to do with quality of life issues that any professional would consider when deciding where to live - climate, schools, and perhaps most importantly, income.
Consider this fact: The number of primary care physicians per capita varies by a factor of 2.5 across U.S. hospital districts, and specialists by more than three-fold, according to Dartmouth. For every doctor who lives and practices in an underserved area, four others settle in an overserved area, the medical school's data shows.
There's an "irrational distribution" of the most valuable and expensive U.S. health care resources and "physicians simply do not settle in greater numbers where patient needs are greater," said David Goodman, director of health policy research at the Dartmouth Institute for Health Policy and Clinical Practice.
Neonatologists don't set up practice where the need is greatest, and cardiologists don't flock to cities with high rates of acute myocardial infarction, Goodman said.
+ Read more: is.gd/4PgeE
• • •
Paging 'Dr. Google'
By Anna Tong, Sacramento Bee. is.gd/4PgNx
A video of a cheerleader supposedly crippled after getting the H1N1 flu vaccine has received almost a million hits on the Internet.
It's driving doctors crazy, as they insist the vaccine is safe and anti-vaccine preachers are plain wrong.
But the H1N1 story is evidence of a broader trend: The public's appetite for Internet health information has fundamentally altered the doctor-patient relationship.
Doctors are no longer perceived as the only authority on health information.
"People don't have that kind of patriarchal relationship with their physicians anymore," said Dr. Maxine Barish-Wreden, who heads California health-care provider Sutter Health's integrative medicine team. "They come in, and they're armed with some data already."
Almost all U.S. physicians said in a survey that at least some patients bring to appointments health information they found online, according to the Manhattan Research Group, a company that researches health care trends.
Sometimes it means those precious few minutes with the doctor can be spent setting the patient on the right track.
"There's such a fine line between somebody who's well-informed and somebody who's misinformed," said Diane Chan, a pediatrician at Kaiser's medical center in Roseville, Calif. "Because then I have two jobs: One, to convince you you don't have a disease that you think you do, and then to diagnose you with the right thing."
Sixty-one percent of Americans look online for health information, the majority of whom say their last search had an impact on medical decisions, according to a 2009 survey from Washington, D.C.-based Pew Research Center. The research group dubbed them "e-patients."
Evelyn Meletlidis of Roseville said she looks up health information online every day because she has an autistic 4-year-old. She belongs to Internet groups for parents of kids with autism. Members trade tips on everything from diets to vaccinations.
Her choice not to continue vaccinating her son was a decision made after extensive research online and offline, she said, and one not welcomed by doctors.
"I've been literally kicked out of offices because I won't vaccinate my child," she said.
But despite all the online information, Pew researchers also found the Internet hasn't replaced doctors.
+ Read more: is.gd/4PgNx
• • •
Autistic Boy, 8, Saves Little Girl
From Drowning at The Entrance
A boy, 8, has been hailed a hero for saving a little girl from drowning.
What is even more remarkable is that rescuer Matthew Kennedy is autistic.
But he leapt into The Entrance pool on Sunday afternoon to save Emily Gold, 3, of Killarney Vale.
Matthew had just arrived at the pool, otherwise known as the Ocean Baths, about 4.30pm with his parents John and Karen and his two brothers and sister.
He was the first in the water and saw Emily struggling and kicking to stay above the water.
“I could see she was in trouble and that I had to help,” Matthew said.
“I jumped in the pool, grabbed her arms, lifted her head above the water and pulled her out of the pool,” he said.
Emily, who was not wearing any flotation device at the time, was unconscious and foaming at the mouth.
“There was no response from her and people at the pool were frantic and screaming,” Mrs Kennedy said.
Mr Kennedy and the pool lifeguard immediately began performing CPR.
After a few minutes, Emily began to breathe again. The Entrance lifeguards arrived soon after followed by an ambulance, which took Emily to Gosford Hospital’s emergency ward.
Surf Life Saving Central Coast director Stuart Harvey said if it was not for Matthew’s immediate actions, Emily would be dead.
+ Read more: is.gd/4PfnT
• • •
New Resources for Parents of Autistic Children, Chattanooga
By David Carroll. is.gd/4PfEu
WRCB - From humble beginnings, parents, staffers and volunteers with the Chattanooga Autism Center hope to grow into something big; a one stop location providing hope and answers for parents of autistic children.
Alyce Benson, Licensed Clinical Social Worker with the Team Centers of Chattanooga, says, "They can come in during the day, access our computers, and talk with our autism coordinator who can provide information and resources."
She says most people don't know about or understand autism until they spot the signs in a child. There's no easy definition, but some of the more common signs include speech problems, poor eye contact, repetitive behavior or unusual sounds and movements.
When parents get the diagnosis, they need help dealing with and understanding the repercussions. Benson says, "We hear from them, they're scared, they say their world is falling apart, and they don't know how to pull it back together."
The stress has proven to be overwhelming for some, and one-on-one assistance can be hard to find. That's why the Autism Center has the potential to bring a brighter outlook through mentoring, support and education.
+ Read more: is.gd/4PfEu
• • •
How Wired Magazine’s Amy Wallace
Endangers Our Kids.
By J.B. Handley on Age of Autism. is.gd/4P1o5
Wired Magazine’s recent cover story on autism, written by Amy Wallace, is titled “An Epidemic of Fear: How Panicked Parents Skipping Shots Endangers Us All.” here: is.gd/4P1nf For any reader hoping for an unbiased, objective discourse on the current state of autism research, the title alone tells you that won’t be happening.
Ms. Wallace’s piece is, in fact, a glowing portrayal of one man, Paul Offit, and his relentless pursuit of the idea that vaccines simply cannot have anything to do with the autism epidemic, since the autism epidemic doesn’t even exist, and vaccines have been proven not to cause autism, and vaccines are much more good than bad, so let’s get on with it already.
As someone who has studied Mr. Offit’s talking points closely for the past 5 years, I was struck by how closely Amy Wallace seemed to echo the points that Offit frequently makes in both the press and medical journals, not only on the specific scientific questions that have and haven’t been answered surrounding many aspects of autism, but even on the more psychoanalytical questions surrounding WHY parents do the things they do (like avoid vaccines). In fact, I can’t find a single original thought or idea in the article from Ms. Wallace that I haven’t previously heard Paul Offit say, nor a single case where her ideas appear to deviate or disagree with any of the positions he takes or has taken in the past: Amy Wallace and Mr. Offit appear to be in perfect harmony.
Ms. Wallace also violates, quite clearly, her own ruminations (which I have heard Offit discuss before) about the reticence required in discourse and debate by true “scientists” that us non-scientists don’t have to abide by: “But researchers, alas, can’t respond with the same forceful certainty that the doubters are able to deploy — not if they’re going to follow the rules of science.” As you will see in a moment, Ms. Wallace’s writing is in fact filled with this “forceful certainty”, starting with the cover of Wired Magazine that states, quite forcefully and most certainly, “Vaccines Don’t Cause Autism."
You see, Ms. Wallace gives the reader the strong impression that she is one of them, the scientists, someone who knows what the science does and doesn’t say and who knows that this silly debate -- that vaccines may cause autism -- is a debate who’s time has past, because, you know, the science shows us that.
One of the oddest things about Ms. Wallace’s article is the characters she allows into the debate to highlight the two sides of this conflict and tell her story. In one corner, and the corner where she spends most of her time, is Paul Offit, a doctor. He is joined by “science”, an omnipotent force, and a force that in Ms. Wallace’s world always agrees with Offit’s points (and hers, since they’re the same points). In the other corner, the corner that us lowly anti-vaccinationists have been relegated to, she shows only civilian parents: Jenny McCarthy, Barbara Loe Fisher, and Curt Linderman. Three parents. No doctors. No scientists. Like the NY Times, it’s parents vs. research. Where’s our science? In the world Amy Wallace creates, it doesn’t exist.
When it comes to facts, particularly the facts that matter most in the debate over autism, I believe Ms. Wallace fails miserably, and in many cases she simply states things that are unsupportable or quite simple to prove as untrue. I hope that this discourse, by focusing on the very specific things that Ms. Wallace wrote and the ACTUAL state of science in the autism world, will cause Ms. Wallace to correct her one-sided article, so that parents who read Wired Magazine will have a more accurate portrayal of the current reality of our understanding of autism.
+ Read more: is.gd/4P1o5
• • •
A Decade of Questioning Harm
And The Autism-Vaccine Connection
By Shelley Hendrix Reynolds huffingtonpost.com. Shelly is the co-founder of Unlocking Autism. is.gd/4P2fO
It's hard to run a marathon that pushes you harder than you have ever been pushed -- physically, emotionally and spiritually. One for which you did not train or set out to run but one that you just woke up to find yourself running one day. One that challenges your endurance with every step.
What happens when you turn your head to see how far you have come only to realize you have been jogging in place?
For over a decade, I've relentlessly searched for answers to the connections I believe exist between my son's autism and vaccines he received. Historically, autism has been considered a genetic condition so I am constantly told I just imagined things. Surely his autism was always there...always evident...from birth. Liam must not have been engaged the way that I remember prior to that summer when he received his MMR. He didn't really play peek-a-boo with me. He didn't really talk. He just disappeared at the same time he got his shots but the vaccines didn't do it.
It was coincidence. Coincidence is not the same as causation.
None of those people lived in my home. None of those people knew my child personally when he was a baby. None of those people saw my bright-eyed son disappear into the abyss of autism right before them.
Recently, I dusted off an old videotaped copy of a story that aired on CNN in October 1999 called "A Question of Harm?" - the first nationally televised piece linking a vaccine to autism. I hadn't watched it in a long time. It's painful for a number of reasons. But I took a deep breath and pressed play.
The memories came flooding back. Liam was fine before his MMR and severely affected after.
Eleven years ago, frantic to sound an alarm, I called every network, begging them to help us ask this question -- to warn parents. CDC statistics in 1998 demonstrated one in every 500 children with autism, a staggering increase from one in 10,000 in ten years. No one would listen.
Their response? "We already did a story on autism this year. Sorry."
But Julie Powell, a CNN producer, stepped up. She took a big risk. 15 months later she, and correspondent Linda Patillo, bravely let America and thirty-three other countries know there just might be a question of harm with vaccines for some children. They helped us ask what if.
What if a potential connection exists between vaccines and the development of autism?
Here is their segment.
Part One: is.gd/4P2zh
Part Two: is.gd/4P2GN
When I look back over the decade, I see enormous progress in Liam's development. He is now in a sixth grade classroom, unassisted except for a modified curriculum -- making good grades. He is sweet, gentle, thoughtful and caring. He has an enormous appetite for learning and a hope for his future. He has a social life complete with a girlfriend, a Facebook account and a cell phone. He just tried out for the basketball team. He lights up every room he enters. He is an inspiration to me, loved by anyone who knows him.
Liam is my Gatorade. He keeps me running when I get light-headed and dizzy. He is my coach. He is my cheerleader.
But when I look back over the last ten years of the autism/vaccine controversy -- or just the safety of vaccine in general, especially from the perspective of the media, I don't see the same progress. The media has not advanced the ball following this developing story in the way I had hoped.
As I replayed the tape, I thought this could have been filmed today, in October of 2009, in any other three year old's house. Today's media repeats the script Julie developed but includes new faces. Child is fine. Child gets vaccine. Child develops autism. Parents cry. Child stares into space then cut to scene of child stacking blocks with his therapist. Doctors still say we don't know what causes autism, except now they affirmatively add -- "but it's not vaccines." Parents rally. Government officials still tout the safety of all vaccines. Health agencies are still trying to figure out how many kids with autism there are out there. Doctors are better at diagnosing, or maybe not. They don't know. Congress is still holding hearings on the issue. Parents still wonder when someone will answer their questions.
Fade to black.
I wondered -- where are the brave investigative journalists we need to ask these hard questions?
There are a couple that will pick up the ball like David Kirby or Sharryl Atkisson but the majority of the reporters that cover these stories are like Amy Wallace, entertainment reporter for Wired Magazine, who, in my opinion once again does not question what she is told, she just regurgitates the propaganda she receives from the vaccine industry and industry supporters. Or Nancy Snyderman who tells us it is not our job to question the safety of shots and to "just get the damn vaccine!"
In the meantime, while we wait for mainstream media to really honestly take a look at these questions, thousands of families, a few politicians, a handful of researchers and doctors across the United States work hard to sound that alarm. These people keep this issue burning bright in the media even when the medical community tells everyone to look away from the light. Vaccines, and their risks, are touched on in a variety of news mediums.
Time marches on and the mainstream media continues to follow that recipe handed down 10 years ago.
Where CNN delivered fresh journalism in 1999, stories today are stale, even moldy. Generally speaking, the media doesn't dig. They do not do their job and ask the questions that make government officials, PhRMA spokespeople or the American Academy of Pediatrics squirm. Now that's entertainment, Amy.
Here are some questions for the White House Press Corps the next time they attend a briefing regarding Swine Flu.
"President Obama, can you please explain why HHS, along with the local and federal law enforcement agencies would not allow a person to pour Thimerosal (an ingredient in some vaccines which contains ethyl-mercury) onto the stone plaza outside the HHS building in protest because it is classified as hazardous waste?"
"Did you know if the amount of ethyl-mercury in one dose of a Thimerosal containing H1N1 vaccine were spilled on the ground HazMat would be required to clean it up?"
+ Read more: is.gd/4P2fO
Note: The opinions expressed in COMMENTARY are those of the author and do not necessarily represent the views of the Schafer Autism Report.
• • •
Re: The Horse Boy: Autism, Unfortunate. So Is the Movie
As the review stated, not many people could go to Mongolia to try and cure their child's autism, let alone fund a movie that just might also enhance the parents' professional standing.
Imagine if one parent had decided that they could spend a lot of time with Rowan at the nearest stables; imagine buying him his own horse or pony; the trajectory of his healing may have been beyond the parents' imagination.
Any of these, less costly options than Mongolia, might be open to other determined parents.
We seriously need to think about the most effective, economical, most intense and fastest route to helping a child with autism. Having found at least one clue to helping one child is awesome. Let's not lose sight of our children being the future, not our own careers.
Actions speak louder than words.
- Helen R.
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