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Dangerous or Deadly “Cures” for Autism and Other Developmental Disabilities

• Neal Rojas, MD MPH
• Associated Clinical Professor of Pediatrics
• UCSF Department of Pediatrics
• Division of Developmental Medicine
• 19th Annual Developmental Disabilities:

An Update for Health Professionals

• March 5‐6, 2020

Disclosures

• I have nothing to disclose

Overview

• There are several reports of injuries and deaths related to treatments
• f children with neurodevelopmental disabilities
• We will review which types of therapies have been associated with

this morbidity as well as how patients can be educated to make the safest choices while pursuing treatment for neurodevelopmental disabilities

Learning Objectives

• We will take a health education approach to describing risks and

understanding what is prevalent in the treatment world today

• We will then review specific treatments which can cause harm
• We will then discuss a clinical approach which will allow for

communication and collaboration in maximizing safety while pursuing efficacy in treating neurodevelopmental disabilities (NDD)

• We will attempt to be humble in also remembering what is

considered standard therapy is not always as safe as we’d like to think

Why Parents Chose Dangerous ”Cures”

• Autism is perceived as a severe,

life‐long condition, resulting in a poor prognosis.

• Parents, new to the diagnosis,

lack knowledge about the disorder, and maybe minimally trained in scientific inquiry.

• Parents must deal with

conflicting information and competing perspectives from professionals.

Why Parents Chose ”Cures”

THE FADS ARE OFTEN PRESENTED AS QUICK FIXES OR CURES. THERE IS INADEQUATE INFORMATION ABOUT THE CAUSE OF AUTISM. MEDS CAN ONLY ALLEVIATE CERTAIN

• SYMPTOMS. NO CURE.

(METZ ET. AL.)

Role of Media

Often shows preferential coverage of “breakthoughs” or ”miracles” Rarely able to go into full scientific breakdowns and methods of studies Often uses strident denunciation of all previous treatments rather than building upon evidence incrementally Celebrities can hijack attention over science using a very powerful anecdotal ‘human face’ approach to convince patients

Pseudoscience

• ”a collection of

beliefs or practices mistakenly regarded as being based on scientific method” (Websters Dictionary)

“a system of theories and methods that has some resemblance to a genuine science but that cannot be considered such. Examples include astrology, numerol

• gy, and esoteric magic. ”

(APA dictionary)

How Pseudoscience Works

Uses some scientific jargon and concepts as well as research‐based evidence but does not fulfill burden of proof with controlled trials or repeatability Often relies on very small studies with leaps of faith in logic that they generalize across real clinical applications (APA)

Pseudosci eudoscience nce can move towards Science with increased rigorous study or towards‐>

• Snake Oil‐ Little to no scientific

basis but popular due to cultural

• r persuasive testimonials

(Websters)

ASD “Abnormal Physiology” Theories

• Several theories of what may

cause ASD are avenues for current therapies:

• These include: Oxidative stress;

Inflammation/immune dysfunction; environmental toxins

• These are real lines of scientific

inquiry across the globe of ASD researchers

Evidence vs. Theories

• While promising evidence for some treatments exists such as

NAC *and Vitamin B12

• Other therapy modalities which ride on these theories such as

chelation or hyperbaric oxygen ARE NOT SAFE! (Bent and Hendrin)

Top 5 Most Dangerous Treatments for ASD/NDD

• MMS
• Chelation
• HBOT
• Lupron Therapy aka Chemical

Castration

• Stem Cell Therapy

MMS

• “Miracle Mineral Solution” or MMS aka Chlorine Dioxine CD or AKEA
• May cause immediate symptoms of esophageal burning
• Long term GI issues because it’s BLEACH! (see poison center reference**)
• Autism Research Institute (ARI) “We advise against using Miracle Mineral
• Solution. We hope parents will remain critical of unsubstantiated claims that

children have recovered or greatly improved in the absence of objective proof. We also strongly encourage any parents who choose to administer MMS to their children to report it to their physician so that side effects can be monitored.”

Dangerous Treatments: Chelation Therapy

• Based on theory that heavy metal toxicity causes autism and other

NDD

• Given risks of renal/kidney damage and hypocalcemia/low Calcium

(at least one documented death of 5 year old with ASD)

• No evidence of efficacy from Cochran analysis in 2015
• FDA stated that chelators that are sold over the counter as treatments

for autism, are dangerous and illegal. They stated that they are potent drugs that carry serious risks—including kidney damage, dehydration, and even death (Tsouderos, 2010).

Dangerous Treatments: Hyperbaric Oxygen

• Hyperbaric Oxygen Therapy (HBOT) used for several other conditions

unfortunately lending credibility to it’s use for NDD

• Some studies by HBOT advocates show mixed evidence of efficacy and

some behavioral benefits.

• More Common Risks include ear pain, tinnitus, exacerbation of anxiety.

Some reports of more severe reactions including hyponatremia/low Sodium and seizures

• Association for Science in Autism Treatment “In conclusion, at this time,

there is no quality empirical research, meeting standards of good science, that support the claim that HBOT is effective as a treatment for ASD. Equally important, the logic and fundamental assumption of using HBOT with individuals with ASD (i.e., to treat inflammation of the brain) is not substantiated and deserves skepticism.”

Lupron Therapy/Chemical castration

• Chemical castration.
• Introduced to the world of autism treatment by the now notorious

father‐son team of the Geiers. These two, in a 20‐year‐long run of damage, might now be reaching the end of their particular race. The father has had his medical license stripped in several states. That didn't stop the Geiers from filing a patent for their chemical castration protocol.

Stem Cell Therapy

• Also has some coattail credibility due to it’s use in leukemia and

recent breakthroughs in blood disorders

• “Stem cell therapy for autism is illegal in the United States, but that

hasn’t stopped some from offering this as a treatment for autism in Costa Rica, China, and other countries. There is no evidence that the treatment is safe or effective for autism, and no guarantee that the stem cells used in these countries are even human.” (Autism Science Foundation)

• Self placenta cell therapy protocals exist in U.S. at a prominent

research university (these may be safer but do not currently offer a clear path to cure )

Standard Therapy (aka Allopathy)

• Traditional Western Medicine with Biological/Scientific basis requiring

proof of efficacy and safety (FDA)

• Unfortunately, this has resulted in mostly just medications for

symptoms rather than etiology management (“The Cure”)

• Atypical Antipsychotic medications and neuroleptic medications such

as risperidone, aripiprazole, and others are well associated with causing metabolic abnormalities such as insulin resistance and high cholesterol

Standard Interdisciplinary Therapy or Multimodal Treatment

• Interdisciplinary work with other types of therapy supporting children

with NDD such as

• Speech Therapy
• Occupational Therapy
• Physical Therapy
• Cognitive Behavioral Therapy
• Other Behavioral Therapies

Integrative Medicine‐CAM Again?

• Given that Allopathy has not offered very much for NDD and ASD

especially, the vast majority of families with ASD surveyed tried one

• r more CAM modalities.
• These are often directed at the common co‐morbid challenges

associated with NDD/ASD such as irritability, hyperactivity, sleep problems or GI symptoms.

Integrative Medicine Approach to NDD

• Growing amount of research looking at areas involving
• nutrition,
• supplements,
• mind‐body therapies

References

• Stephen James, Shawn W Stevenson, Natalie Silove, and Katrina

Williams, “Chelation for autism spectrum disorder (ASD) Cochrane Database; Cochrane Database Syst Rev. 2015 May; 2015(5): CD010766.

• Mary E. McDonald PhD , Darra Pace EdD , Elfreda Blue PhD & Diane

Schwartz EdD ”Critical Issues in Causation and Treatment of Autism: Why Fads Continue to Flourish” 290‐304 | Received 01 Oct 2010, Accepted 07 Mar 2011, Published online: 06 Nov 2012

References

• Plafki C, Peters P, Almeling M, Welslau W, Busch R. Aviat Space Environ
• Med. Complications and side effects of hyperbaric oxygen therapy.
• 2000 Feb;71(2):119‐24.
• Ghanizadeh A. Hyperbaric oxygen therapy for treatment of children with

autism, a systematic review of randomized trials. Med Gas

• Res. 2012;2(1):13. doi: 10.1186/2045‐9912‐2‐13.[PMC free

article] [PubMed] [CrossRef] [Google Scholar]

• Rossignal DA et al. Hyperbaric oxygen treatment in autism spectrum
• disorders. Medical Gas Research. Published online 2012 Jun
• 15. doi: 10.1186/2045‐9912‐2‐16

References (continued)

• “Complementary and Alternative Treatments for Autism Part 1: Evidence‐

Supported Treatments” Stephen Bent, MD, and Robert L. Hendren, DO AMA Journal of Ethics, April 2015, Volume 17, Number 4: 369‐374

• Complementary and Alternative Treatments for Autism Part 2: Identifying

and Avoiding Non‐Evidence‐Based Treatments;Alison Singer, MBA and Ramita Ravi.

• Metz , B. , Mulick , J. A. , & Butler , E. M. ( 2005 ). Autism: A late 20th

century fad magnet . In J.Jacobson , R. Foxx , & J. Mulick (Eds.), Controversial therapies for developmental disabilities: Fad, fashion, and science in professional practice (pp. 237 – 264 ). Mahwah , NJ : Lawrence Erlbaum .

References

• “The fake cures for autism that can prove deadly” by Frances Ryan,

July 13, 2016 The Guardian (US Edition)