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J.B. Handley: Autism Treatment and Recovery

J.B. Handley: Autism Treatment and Recovery

DECEMBER 10, 2018

(Note: This excerpt is from Chapter 10 of the best-selling book, How to End the Autism Epidemic.)

There is today a tremendous disconnect between obtainable knowledge and implemented treatment for autism. There is an ever-widening gap between what parents know and what physicians know. The parents have made themselves experts in complex biochemistry, immunology, and gastroenterology. They know what is happening on the cutting edge of autism treatment because their kids need them to know. This kind of parent overtakes their pediatrician’s expertise very quickly.[i]

—  Dr. Julie Buckley, author, Healing Our Autistic Children

Children are recovering from autism every day. Typically, their parents implement biomedical intervention, the symptoms that defined the autism disappear, and the children go on to lead a normal life. In 2008 my wife and I produced a twenty-six-minute documentary called Autism Yesterday. It told the story of five children and their families recovering from autism. Today three of those children are either in college or on that path!

When people lie about or obfuscate the cause of autism, they impair the important work of recovery. Recovered children are proof that autism is an environmental condition that has a cause and a treatment. Epidemic denialists, in particular, hinder the willingness of some parents to seek treatment, if they’re led to believe that their children’s autism was inevitable and genetic. Recovery is real.

Does that mean all children recover? Sadly, no. Many parents try biomedical intervention and don’t see their children recover. It can be a long, frustrating, and exhausting road, full of hope and disappointment. Certain therapies are expensive, and few at this point are covered by insurance. Most mainstream doctors don’t know anything about them, so you have to forge your own path, find other families in the same boat, and educate yourself beyond belief. No autism parents should ever have to feel like failures—on top of all the other daily struggles—if their child doesn’t recover. This is one of the great injustices of the autism tragedy: The failure is on the part of our public health establishment, and yet parents—often with other children to care for and other responsibilities and stresses in their lives—are left to shoulder it all on their own. 

That said, I think it’s fair to say that almost all children who are treated improve, and some recover. So where have others experienced success? Where should an autism parent turn first? What are the most promising options on the horizon?

What Is Biomedical Intervention?

The best book ever written on this topic is Healing and Preventing Autism: A Complete Guide by Dr. Jerry Kartzinel and Jenny McCarthy.[ii]I highly recommend you get this book and read it. 

Remember Dr. Lynne Mielke, our original DAN! doctor that I talked about in the introduction to this book? You will need someone like her—a physician trained in the biomedical recovery of autism who can design an individualized program for your child. Like many of the original DAN! doctors, Dr. Mielke continues to treat children today. Most autism biomedical doctors are now part of the Medical Academy of Pediatric Special Needs (MAPS). Their website offers a clinician directory with doctors available in almost every state.

Of course, I’m not a doctor, but these are some of the basic therapies of a biomedical program that might be included in your child’s individualized treatment plan:

Special diet.Children with autism typically suffer from a wide range of food allergies. Removing offending foods can have a profound impact on behavior. The high-impact foods categories to remove include gluten, dairy, soy, and sugar. Children have recovered from the removal of gluten alone. There are two diets that deserve special mention. They are much harder to implement, but both have many success stories: the GAPS diet and the ketogenic diet. 

Gut healing.The guts of children with autism are often severely impaired. Diet will improve gut function, as does the removal of artificial colors and flavors. Many children also take probiotics and supplements to regulate candida, a form of yeast that is typically overgrown in the intestines of children with autism.

Nutrition.Because of their compromised guts and general ill health, children with autism often benefit from targeting vitamins and minerals. For some, vitamin B12 can be an immediate boost. For others, magnesium will alleviate many symptoms. Other doctors specialize in “mitochondrial cocktails” that are formulated to address the mitochondrial dysfunction Drs. Zimmerman and Kelley discussed in their depositions and in Hannah Poling’s case. 

Detoxification.Far-infrared saunas, ionic footbaths, magnetic clay, chlorella, and cilantro are a few of the many ways to support the body in detoxification. Many parents report remarkable results once a detox program has been implemented. 

Advanced therapies.Stem cells, hyperbaric oxygen, and intravenous immunoglobulin (IVIG) infusions are just a few examples of treatments that have helped children recover. 

Where do you start? Read a lot, and find a MAPS doctor near you. Those two actions will be your best chance for an optimal recovery.

The Suramin Study

In 2016 UCSD professor Dr. Robert Naviaux published a study that had done a trial of a single drug, suramin, on ten children with autism.[iii]The results were promising, with all of the children who received suramin showing improvement, including a few “miracles.” The trial was done as a double-blind study, making the results more robust and credible. Even more interesting, Dr. Naviaux put forth his own theory about what was causing autism, and why suramin seemed to help:

Our research is leading us to the conclusion that autism is caused by a treatable metabolic syndrome in many children. The exact percentage is currently unknown. Metabolism is the language the brain, gut and immune system use to communicate. These three systems are linked. You can’t change one without changing the other. Each of these systems works differently in autism, but more specifically, the communication between these systems is changed in autism. Such changes occur both during and after the pregnancy. Suramin can only improve metabolic functions once a child is treated. While antipurinergic therapy (APT) with suramin may not directly change some aspects of abnormal brain development that were present before treatment, APT may improve the function of many brain systems, even if brain structure does not change. And in children and teens whose brains are still developing, the course or trajectory of brain development might also be changed by treatment.[iv]

I’m fascinated by Dr. Naviaux’s hypothesis. Note that Dr. Naviaux is identifying the same phenomenon that Drs. Zimmerman and Kelley are seeing. Dr. Naviaux also coined a new term—cell danger response (CDR)—that sounds like the state of cells after an immune activation event:

The metabolic syndrome that underlies the dysfunction is caused by the abnormal persistence of the cell danger response or CDR. Aspects of the CDR are also known to scientists as the “integrated stress response.” Both genes and environment contribute to the CDR, so even genetic causes of autism lower the threshold for CDR activation and produce the metabolic syndrome. Ultimately, if the symptoms of autism are caused by a metabolic syndrome, the hopeful message is that the symptoms can be treated, even though we can’t change the genes.[v]

I’ve talked to several of the parents of children who were in Dr. Naviaux’s study. They told me it was like someone turned the lights on in their child. Unfortunately, after about six weeks, the improvements began to fade. Because suramin is not yet licensed to be used for children with autism outside of the study, the parents aren’t able to get ongoing infusions. Let’s hope that will change. In the meantime, the suramin trial raises what I think is the most important questions we need answers to about autism: Is autism permanent brain damage or is the brain “locked” in an inflamed or hyperstimulated state? And therefore, if it’s “unlocked” can a child return to normal?

Dr. Naviaux’s study would imply that if you can turn off the cell danger response, normal brain function can resume. This is potentially earth-shattering news and corroborates stories I have heard from recovered children: They were always aware of the world but felt as if they were “locked” from expressing themselves. We pray that Dr. Naviaux’s research continues and that the FDA approves suramin for use in children. It could change everything.

By the way, Dr. Naviaux never mentions vaccines. He often mentions that the environment can cause the cell danger response. I won’t put words in his mouth, but I know what thing in the environment at least some of the parents in the trial believe caused their child’s autism.

What about Aluminum, Specifically?

The recent science demonstrating that aluminum is triggering immune activation events raises an obvious question: Does this new information change the nature of biomedical intervention? Is it time to get the aluminum out or find some other method to turn off the permanent immune system activation in the brains of children with autism that is causing inflammation and impairing brain function? Here are some of the better ideas I have heard for how to do that:

Drink silica mineral water.Dr. Christopher Exley, the scientist who discovered high levels of aluminum in autism brains, claims that mineral waters with high natural silica are the best way to remove aluminum from the brain. The two brands he recommends that are available in the United States are Vittel and Fiji water. Specifically, he says to drink 1.5L (51 oz) of the mineral water in a one-hour time period every day, something he feels we should all do to keep the aluminum out of our bodies. 

Adopt the ketogenic diet.In 2017 a study called “Ketogenic Diet Improves Behaviors in a Maternal Immune Activation Model of Autism Spectrum Disorder” discussed the impact a ketogenic diet had on suppressing immune activation in mice.[vi] The scientists wrote:

Here we show that metabolic therapy with a KD [ketogenic diet] improves and can even reverse ASD-like behaviors in the MIA mouse model.

It’s worth noting that the ketogenic diet has been used for years to help reduce seizures. Ketogenics are going through a bit of a revolution, with “exogenous ketones” now being made available as supplement products to put a body into ketosis more quickly. Could these exogenous ketones accelerate recovery? I have no idea, but this study alone seems to show it’s worth far more exploration.

Heal the microbiome.We know that aluminum adjuvant can contribute to gastrointestinal distress. A 2013 study—“The Microbiota Modulates Gut Physiology and Behavioral Abnormalities Associated with Autism”—highlights the relationship between the gut microbiota, immune activation, and autism: 

Our findings provide a novel mechanism by which a human commensal bacterium can improve ASD-related GI deficits and behavioral abnormalities in mice, possibly explaining the rapid increase in ASD prevalence by identifying the microbiome as a critical environmental contributor to disease. We propose the transformative concept that autism is, at least in part, a disease involving the gut that impacts the immune, metabolic and nervous systems, and that microbiome-mediated therapies may be a safe and effective treatment for ASD.[vii]

The scientists used a particular strain of probiotic, Bacteroidesfragilis, and found that the probiotic “corrects gut permeability, alters microbial composition and ameliorates ASD-related defects in communicative, stereotypic, anxiety-like and sensorimotor behaviors.”

Vitamin D.The Vaccine Papers website discusses the role vitamin D can play in reducing immune activation: 

Vitamin D favorably regulates the immune system, simultaneously improving its effectiveness at eliminating pathogens, and reducing inflammation. . . . Vitamin D is consumed by the immune system when it’s activated. It is a nutrient that is metabolized at a faster rate during infection or inflammation. Consequently, people with inflammatory conditions need greater amounts of vitamin D. They must supplement at a higher dose to achieve healthy blood levels. Since chronic immune activation is always present in autism, autistics require higher vitamin D intake than normal people.

A 2015 study from China supported the role of vitamin D: “Core Symptoms of Autism Improved after Vitamin D Supplementation.”[viii] The authors noted that “we report on a 32-month-old boy with ASD and vitamin D3 deficiency. His core symptoms of autism improved significantly after vitamin D3 supplementation.”

Selenium.A study titled, “Selective Induction of IL-6 by Aluminum-Induced Oxidative Stress Can Be Prevented by Selenium” in the Journal of Trace Elements in Medicine and Biologyin 2012 concluded the potentially restorative effects of the mineral selenium:

Therefore it was concluded that short-term exposure to Al [aluminum] causes adverse effects on the intracellular oxidative stress processes in the liver, as reflected by the selective increase in the IL-6 concentration. This process can be restored by co-administration of the trace element Se [selenium] as a part of the glutathione redox system.[ix]

Do the interventions that remove aluminum from the body or reduce the impact of immune activation events work to recover children? I don’t think we have enough data yet to know, but I hope you can see how important it is to understand how our children’s autism was caused. We use causation as a road map for how to treat and, we hope, recover our children. 

Footnotes:

[i]. Julie Buckley, Healing Our Autistic Children: A Medical Plan for Restoring Your Child's Health (New York: St. Martin’s Griffin, 2010). 20

[ii]. Jerry Kartzinel and Jenny McCarthy, Healing and Preventing Autism: A Complete Guide(New York: Plume, 2010). 

[iii]. Robert Naviaux et al., “Low-Dose Suramin in Autism Spectrum Disorder: A Small, Phase I/II, Randomized Clinical Trial,” Annals of Clinical and Translational Neurology4, no. 7 (2017): 491–505.

[iv]. “Q&A: Suramin Autism Treatment-1 (SAT-1) Trial,” UC San Diego Health, https://health.ucsd.edu/news/topics/Suramin-Autism/Pages/Q-and-A.aspx

[v]. “Q&A: Suramin Autism Treatment-1.”

[vi]. David Ruskin, “Ketogenic Diet Improves Behaviors in a Maternal Immune Activation Model of Autism Spectrum Disorder,” PLoS ONE12, no. 2 (2017). 1-14

[vii]. Elaine Hsiao et al., “The Microbiota Modulates Gut Physiology and Behavioral Abnormalities Associated with Autism,” Cell155, no. 7 (2013): 1451–1463.

[viii]. Feiyong Jia et al., “Core Symptoms of Autism Improved after Vitamin D Supplementation,” Pediatrics135, no. 1 (2015): e196–198.

[ix]. Dale Viezeliene et al., “Selective Induction of IL-6 by Aluminum-Induced Oxidative Stress Can Be Prevented by Selenium,” Journal of Trace Elements in Medicine and Biology27, no. 3 (2013): 226–229.

J.B. Handley: Is there a path to end the autism epidemic?

J.B. Handley: Is there a path to end the autism epidemic?