Autism Treatment Claims: The "Revolutionary" Brain Balance Program

I was somewhat startled  to read a September 16, 2011 promotional release  for a Brain Balance Program center opening in Pennsylvania that claims to be a "revolutionary" treatment for a variety of developmental delays including ADHD, Dyslexia, Asperger’s, Tourettes, OCD, Asperger's and Autism. The Business Wire advertisement/news release Revolutionary Treatment for Developmental Delays Comes to Philadelphia is Bold and Brash and Boasts that contrary to popular belief autism and the other listed developmental delays can be cured ... via the "revolutionary" Brain Balance Program: 

"What’s going on? Dr. Joseph Schneider, director of the new Brain Balance Center in Springfield, PA, asks a more direct question, “What’s going wrong?”

A widely held, but erroneous belief is that there is no cure for these problems, combined with well-meaning teachers and other professionals using academic approaches, may actually be contributing to the soaring statistics of new diagnosis.”

Parents are repeatedly told that these neuro behavioral and neuro academic dysfunctions can get better but they will never disappear. Not surprising considering that the methods that doctors, psychologists and behavioral specialists use to diagnose and treat these conditions have not changed in over 50 years.

“I can tell you that they CAN disappear. They do disappear. And I have fully documented proof that more than 1,000 children to prove it. It is called the Brain Balance Program, a revolutionary, non-medical approach that effectively corrects the hemispheric imbalance between the right and left sides of the brain,” say Schneider with unbridled enthusiasm."

It seems almost surrealistic, with all the intense debates about autism treatments, from the solidly evidence based like ABA to the ridiculously absurd like swimming with dolphins,  to see a promotion for a "revolutionary" autism treatment program marketed with "unbridled enthusiasm".  It almost seems like the owners of this proprietary treatment want someone to heap scorn and ridicule on their claims.

On autism treatments I am very small "c" conservative.  I wait for credible authorities like the US Surgeon General and the American Academy of Pediatrics to review the research literature and offer guidance on what constitutes evidence based effective autism treatments. I am NOT telling other parents what to do with their financial resources or their child's precious development time. I am simply saying I want to see reviews by credible authorities  before I gamble my son's development, and possibly his well being,  on "revolutionary" treatments.

The unbridled enthusiasm of the co-owner of a proprietary treatment doesn't do it for this autism parent. 

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Autism Jabberwocky Questions Michelle Dawson's Understanding of Evidence Based Medicine Concept

Autism Jabberwocky one of the best, and best written, autism blogs on the internet features an excellent commentary  which highlights an apparent lack of understanding by anti-ABA ideologue Michelle Dawson of the concept of evidence based medicine.  As explained by MJ at Autism Jabberwocky in Michelle Dawson Writes A Letter.

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"Evidence-based medicine is the idea that all medical decisions should be based on the best scientific evidence that is available.  The concept is really very straightforward. You take the results that research has provided, rank them according to the quality of the information, and use that ranked evidence to decide what the best course of treatment is."

Making medical decisions as to appropriate treatment based on the best available evidence seems simple enough to grasp.  It is an eminently practical concept.  People can not just wait  decades  for perfect research  studies to be conducted under perfect conditions (which may never occur).  They have to make  treatment decisions based on the best evidence of safe and effective treatment  available at the time they are confronted with a medical condition requiring treatment.

It is one thing for Michelle Dawson, researcher, to hold out for an ideal and perfect study that may never happen.  It is another thing altogether for parents trying to help their autistic children overcome their disorders and live the fullest, happiest life they can. They have to make decisions to help their children based on the state of knowledge at the time.

MJ summarizes concisely and accurately the status of ABA as an evidence based, effective treatment for autism disorders and the curious nature of Michelle Dawson's apparently irrational opposition to ABA: 

"One of the few treatments for autism that does have a solid evidence base is ABA (Applied Behavior Analysis).   While it is not guaranteed to work for everyone, the available evidence shows that it can be an effective tool to help teach children with autism and is almost universally recommended.

That is, with the exception of the universe of Michelle Dawson.  As I have pointed out before, Ms Dawson has a real problem with ABA. She seems to have an almost irrational obsession with proving that ABA is somehow unethical or immoral to use on children with autism. She would tell you that she has ethical concerns and that there is very little evidence that ABA works.  However, Ms Dawson is almost universally alone in her opinion."

Michelle Dawson is not completely alone though.  Her anti-ABA views are shared by her collaborative colleague Professor Morton Ann Gernsbacher.  Gernsbacher's anti-ABA views have been scathingly reviewed by Professor Edward K.  Morris of the University of  Kansas who commented on the harm caused by Gernsbacher's misrepresentation of ABA:  A Case Study in the Misrepresentation of Applied Behavior Analysis in Autism: The Gernsbacher Lectures.

Michelle Dawson has spent her post Canada Post career  trying to tarnish the public perception of ABA as an effective, beneficial autism treatment. To my knowledge she has never explained what autism treatments, if any,  do meet with her approval.

Fortunately  the serious and credible reviews of autism interventions that have been done over the past decade and a half do not appear to give her views, or those of her colleague Morton Ann Gernsbacher,   any weight or mention.

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Autism Treatments: Will Experimental Stem Cell Treatment Help?

While the autism world buzzes over the Chicago Tribune's demolition of the Geiers and the Lupron treatment the need for evidence based treatments that might cure autism disorders remains unfulfilled and largely ignored by the medical research establishment. ABA is a solidly evidence based intervention which can help autistic children make substantial communication, intellectual, behavioral and adaptive skills gains. But the demand for a complete cure for autism disorders remains and as long as it does some parents will seek out non-evidence based treatments for their child's autism. Of course, treatments can not become evidence based unless experiments are undertaken. Hopefully, as in anything involving children, the best interests of the individual child involved will always be considered of primary importance.

13WHAM.com of Rochester reports that the parents of a Rochester, New York boy with autism are beginning their own autism "experiment" with stem cell treatment. WHAM.com reports that the Patterson family are taking their autistic son to Peru for stem cell treatment. The experimental treatment will cost $25,000. The Pattersons will be accompanied by Dr. Burton Feinerman:

"Dr. Burton Feinerman, a Mayo Clinic trained cellular therapy specialist, is working with the Pattersons. He has used the stem cell procedure on children who’ve had strokes, brain injuries and other neurological problems. "

WHAM.com reports that the Pattersons have been assured that the procedure is safe although they have been no guarantees of success. Hopefully the procedure is indeed safe for the Patterson boy. The presence of a Mayo Clinic trained cellular therapy specialist, with actual experience in stem cell procedures, during the treatment suggests that it will be. Hopefully too the necessary steps will be taken to ensure that, whatever the outcome for the boy involved the results will have some scientific value, will be of some use in assessing the merits of this particular form of autism treatment, whether those results show promise ... or not.

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Lupron and the Need for Evidence Based Autism Treatments

The Chicago Tribune has published two articles critiquing the use of Lupron as a a treatment for autism and, in particular, the Lupron treatment efforts of Dr. Mark Geir and his son. Autism drug Lupron: 'Miracle drug' called junk science and Autism drug Lupron: Father-and-son team's crusade shows cracks.

As the titles suggest the focus of the second article is on the Geirs personally and the fact that several tribunals have found them to be lacking in the necessary expertise and credibility to make the claims that they have made in vaccine court cases where they have testified many times in support of plaintiffs claims of vaccine induced autism.

The first article focuses more on the science in support of Lupron as an autism treatment, or more properly put, the lack of scientific or evidential support for Lupron as an autism treatment. The Tribune article seems fair and balanced to me, describing the existence of anecdotal evidence in support of Lupron's efficacy in treating autism but also describing the weaknesses inherent in anecdotal evidence and the dangers of this particular treatment.

Non-evidence based autism treatments may waste parents money and a child's precious development time, resources that might better be used for ABA therapy, a solidly evidence based therapy for helping children overcome some of the deficits associated with autism disorders.

In the case of Lupron the Tribune also points out that direct harm may actually result from the use of Lupron to treat autism:

"Experts in childhood hormones warn that Lupron can disrupt normal development, interfering with natural puberty and potentially putting children's heart and bones at risk. The treatment also means subjecting children to daily injections, including painful shots deep into muscle every other week."

These are serious, very serious dangers, and parents should think once, twice, three times before considering any treatment that exposes their child to such serious risks. They are taking a huge gamble with their child's health, safety and well being. It is not a gamble I would consider for my son Conor.

At age 13 Conor is already 5' 11" and he began the "teen years' development very early and with obvious physical changes. But under no circumstance will my son be receiving Lupron treatment or any other intrusive treatment that is not solidly evidence based and shown to be safe and effective in treatment of autism disorders. Conor receives ABA therapy and ABA based education at school.

One of the problems is that for many parents ABA is not immediate and does not "cure" in a traditional sense. It can result in very impressive and measurable gains in intellect, adaptive skills and social functioning. But ABA is subject to an ideological, and at times irrational, opposition from several quarters, often from people with no real stake in whether an autism treatment works or does not. This intense opposition creates a false impression that there are no significant therapies or treatments available so it is better to gamble with unproven treatments than to do nothing. Even Lisa Jo Rudy, a balanced and respectful commentator, blogger and autism mom routinely lumps ABA in with other non-evidence based therapies contrary to the assessments of autism interventions by several major and credible reviewing agencies. Such commentary blurs the distinction between evidence based and non-evidence based treatment.

Another major encouragement for the use of Lupron and other non-evidence based, and potentially dangerous, treatments is the failure of the medical research community to conduct research focused on understanding environmental causes and developing cures for the various autism disorders. While the Geirs' credibility and expertise have been soundly trounced in numerous proceedings the science which supposedly rejects concluisvely any possible vaccine-autism connection is not as solid as most mainstream media articles state. Even the 2004 IOM report did not state that a vaccine-autism connection had been disproven. It simply stated that the epidemiological studies to date did not support a connection but it also then discouraged, for policy reasons, the type of research that might have shown such connections.

The failure to rigorously investigate vaccine and other possible environmental causes of autism has also been accompanied by a failure to conduct research aimed at possible cures focusing on the causes found. From the days of Teresa Binstock's article in 1999 the medical establishment has preferred to pretend that autism has to be entirely genetic despite evidence to the contrary. Such an approach has helped protect from serous scrutiny the pharmaceutical industry and other industries that produce products containing toxic substances potentially damaging to the proper neurological development of children. Such an approach has also resulted in a failure to develop significant treatments and cures apart from Applied Behavior Analysis.

Most parents will not be foolish enough to believe that autism is anything other than what it is a neurological disorder which pervasively restricts their child's life and well being. Most parents will not be fooled into thinking that autism is a culture, a choice or a way of life. They will seek to treat and cure their autistic child. For many they will want a total cure not just the improvement in life skills and abilities that ABA can bring.

If this intense need continues to be ignored by the medical research establishment some parents will look to non-evidence based, and even potentially dangerous ,treatments. As long as medical research authorities abandon the field as they did with the insistence, for many years, on funding genetic based autism research only, and as they did when the 2004 IOM report expressly discouraged research that might have shown a vaccine-autism connection, some parents, unfortunately, will turn to unproven, potentially dangerous treatments for their child's autism disorder.

Fortunately, the IACC has shown with its new strategic research plan for autism an understanding of the need to broaden the base of autism research to examine possible environmental causes and contributors, including even possible vaccine connections. With such research may come the evidence based treatment that the medical establishment has failed to provide, a failure which has helped create a demand for Lupon and other non-evidence based autism interventions.

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Misleading Autism Treatment Statements at About.com Autism

Lisa Jo Rudy at About.com Autism, for reasons unknown to me has made misleading statements about the evidence in support of the efficacy of various autism treatments. Coming on the heels of the recent Deborah Fein study showing that 10-20% of subject children with autism recovered from their autism with Intensive Early Behavioral Intervention ... ABA ... it is surprising to see About.com Autism apparently react to that study with the assertion that all autism therapies are created equal. Ms Rudy and About.com Autism appear to have turned their backs on evidence based assessments of autism treatments.

Ms Rudy stated in Can All Positive, Intensive Therapies Help Kids with Autism?:

As a result, there's no good way to know whether a child who received Floortime would have done better with RDI or ABA. Certainly, evidence shows that most children with autism improve to varying degrees with intensive therapy, no matter what its name.

Apart from the recent Fein study demonstrating full recovery as set out above other studies and reviews of those studies have unequivocally indicated that only ABA enjoys a solid evidence basis in support of its effectiveness:

The MADSEC (Maine) Autism Task Force assessed the evidence basis in support of various autism interventions as of 2000 and found that only one, ABA, met the highest standard:

"Based upon a thorough examination of numerous methodologies considered as interventions for children with autism, the MADSEC Autism Task Force has characterized the interventions reviewed as follows:

• Substantiated as effective based upon the scope and quality of research:
Applied behavior analysis.

In addition, applied behavior analysis’ evaluative procedures are effective not only with behaviorally-based interventions, but also for the systematic evaluation of the efficacy of any intervention intended to affect individual learning and behavior. ABA’s emphasis on functional assessment and positive behavioral support will help meet heightened standards of IDEA ‘97. Its emphasis on measurable goals and reliable data collection will substantiate the child’s progress in the event of due process.

In describing the evidence backed benefits of ABA the MADSEC Report noted that:

There is a wealth of validated and peer-reviewed studies supporting the efficacy of ABA methods to improve and sustain socially significant behaviors in every domain, in individuals with autism. Importantly, results reported include “meaningful” outcomes such as increased social skills, communication skills academic performance, and overall cognitive functioning. These reflect clinically-significant quality of life improvements. While studies varied as to the
magnitude of gains, all have demonstrated long term retention of gains made.

Other major contributions of ABA to the education and treatment of individuals with autism include:

• a large number of empirically-based systematic instruction methods that lead to the acquisition of skills, and to the decrease/elimination of aberrant behaviors;

• a technology for systematically evaluating the efficacy of interventions intended to affect individual learning and behavior; and

• substantial cost/benefit.

Over 30 years of rigorous research and peer review of applied behavior analysis’ effectiveness for individuals with autism demonstrate ABA has been objectively substantiated as effective based upon the scope and quality of science. Professionals considering applied behavior analysis should portray the method as objectively substantiated as effective. Methods of applied behavior analysis should be considered to evaluate the effectiveness of any intervention used to help individuals with autism. Researchers should continue to vigorously investigate behavioral intervention as the most promising area of research and treatment benefiting individuals with autism known today. Early interventionists should leverage early autism diagnosis with

The American Academy of Pediatrics Management of Children with Autism Spectrum Disorders (2007) report described the level of evidence of ABA effectiveness in a manner that no other treatment mentioned in the report even remotely approximated:

Applied Behavior Analysis

Applied behavior analysis (ABA) is the process of applying interventions that are based on the principles of learning derived from experimental psychology research to systematically change behavior and to demonstrate that the interventions used are responsible for the observable improvement in behavior. ABA methods are used to increase and maintain desirable adaptive behaviors, reduce interfering maladaptive behaviors or narrow the conditions under which they occur, teach new skills, and generalize behaviors to new environments or situations. ABA focuses on the reliable measurement and objective evaluation of observable behavior within relevant settings including the home, school, and community.

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–40

To these reviews of studies supporting ABA effectiveness in treating autism can be added the US Surgeon General and the NY State Department of Health. Now the Fein study on autism recovery would add to the information basis of such reports.

We are decades past the point where About.com Autism can claim that all autism interventions are created equal as long as they are positive and done early and intensively. There is no evidence to support the About.com position. The About.com Autism position is in essence a rejection of an evidence based approach to assessing autism interventions.

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Early ABA Autism Intervention Makes Dollars and Sense

The title of this comment is a modification of the Dr. William Frea article Early autism intervention makes dollars and sense on dailybreeze.com.

I modified the title for my comment for the simple reason that in the subject article Dr. Frea is talking about the individual child benefits and societal costs savings arising from early ABA intervention. Every parent is free to choose who they wish to consult with respect to their choice, if any, of intervention for their autistic child. If anyone is wondering why they might want to consider Dr. Frea's recommendations they should know that he is chief clinical officer and co-founder of Autism Spectrum Therapies, an agency providing autism services throughout Southern California, and has served on the California State Legislative Blue Ribbon Commission on Autism. In other words he has the education, experience and expertise to know what he is talking about.

Another reason to listen to Dr. Frea is that he bases his recommendations on an evidence based approach to assessing autism interventions and their merits. An evidence based approach uses the best available scientific and empirical evidence to assess the effectiveness of a treatment or intervention. This avoids reliance on non-scientific anecdotal evidence and reliance on a near impossible standard that may never be met during the lifetime of your autistic child. It also avoids ideologically motivated anti-autism treatment rhetoric as the basis for trying to help your autistic child.

Dr. Frea reviews the results of autistic children who receive early ABA and the cost savings to society that result. He urges California policy makers to fund, or require funding of, evidence based autism therapies. In this context he summarizes nicely the current position of ABA as an autism treatment:

We all hope researchers will soon discover the cause of the autism epidemic and how to prevent it. In the meantime, we need to deal with both today's reality and tomorrow's prognosis, as these children move on through middle school, high school and transition to adulthood and careers. The best investment that we can make today is early intervention with scientifically validated ABA therapy.

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Change.org's Straw Man Attack On Autism Recovery

Change.org represents a progressive voice on many fronts but when it comes to children and adults with autism spectrum disorders it has chosen to embrace the regressive ideology of Neurodiversity (ND). The ND ideology is regressive on many fronts, it is inherently undemocratic in that adults with mild versions of autism disorders assert a right to speak on behalf of autistic children they do not know, some of whom are far more severely affected then they, by autism disorders. ND is also regressive in its opposition to cure or recovery from autism spectrum disorders, neurological disorders which impair the lives of many children and adults.

Change.org hired two ND bloggers, Dora Raymaker and Kristina Chew, both of whom subscribe to the "ND, autism can not and should not, be cured" manual. Ms Chew, although she is a parent who has recognized the serious deficits accompanying her own son's autism disorder by having him receive ABA therapy AND at least two autism targeting medications, frowns upon the notion of curing autism or recovery from autism. In "Recovery" from Autism: Fantasy and Reality Ms Chew again criticizes the idea of recovery from autism this time by a critique of The Horse Boy: A Father's Quest to Heal His Son, a recently published account of a father's apparent attempt to recover his son from autism by taking him to ride horses in Mongolia and visit with Shamans. Ms Chew justifiably critizes the bizarre notion that autism recovery could result from such activities. But she is not content to take a well deserved shot at Mongolian horse nonsense. She continues on with a rambling general attack on the concept of recovery from autism:

"I've yet to read The Horse Boy to see what its covers hold so, beyond expressing my reservations about talking about "healing" a child from autism---because focusing on "recovery" from autism twists discussions in endless circles about causes and treatments, rather than about lifelong needs and supports and services---I'll just say that life as some mixture of light and loss and goodness and dark----that has been what our journey with Charlie has been like. There've been many epic moments when I felt I was witnessing about the grandest thing the universe could provide---Charlie riding his bike on a street in a midsize north Jersey town, Jim pedaling proudly behind---and it's all been real, no fantasy, and the result not of magic but of hard work, of sweat, some tears, and love."

Kristina Chew has apparently abandoned the idea that her son with an autism disorder, who has received ABA, pharmaceutical and biomedical treatments for his disorder, will recover from his autism. I can understand the feelings that must bring about as he grows older, as my son is now 13, and realize that he will not be living an independent life. But I can not follow Ms Chew down the path of rejection of the concept of autism cure, treatment or recovery.

Cures might arrive with more research on causes of autism, a subject of which Ms Chew seems to be tired. If a safe effective cure or treatment can help my son in future I will want it for him. ABA was not generally available for Conor in his early years but has become available for him for several years because of determined advocacy by me and my fellow parents here in New Brunswick, Canada, because we had responsive , conscientious government leaders and because we had the assistance of some key academics and professionals who put together a unique program which has helped autistic children across New Brunswick. ABA does not mean recovery for Conor Doherty but it has meant acquisition of some important skills and in particular enhanced communication and reduced self injurious behavior. For some ABA might mean full recovery. For me Conor's gains, although not recovery, are enough to keep my spirits up and my hopes alive.

The studies and professional literature on autism interventions have been reviewed by such agencies as the American Academy of Pediatrics, the US Surgeon General, the NY State Department of Health, the Association for Science in Autism Treatment, the MADSEC (Maine) Autism Task Force and many others and these reviews of the literature indicate by means of various euphemisms, eg. "indistinguishable from chronological peers", that recovery is possible in some instances using ABA. These sources and the method they endorse, ABA, are much more informative than generalizations made from one person's experiences whether it be Kristina Chew's experiences with, and feelings about, attempts by her to recover her son from autism or my efforts with Conor which have resulted in some important gains for Conor, albeit far short of recovery. Because Conor is not near "recovery" though I do not attack the merits of others seeking recovery for their child from autism or the possibility that it occurs.

The Center for Autism and Related Disorders, Inc., which includes Doreen Granpeesheh Ph. D., who has had a formidable career actually helping autistic children recover from the negative realities of autism disorders, now has a blog site on which is posted articles and videos concerning recovery from autism. For examples of recovery, and informed balanced discussion of autism recovery, parents and the public would do well to skip past the anti-cure, ND pages of Change.org and visit the CARD blog site. The CARD people, unlike Change.org, are not ideologically opposed to autism treatment or cure. They have not given up on helping autistic children recover and they are backing up their ideas with action to actually help autistic children.

Recovery, according to some people actually dedicated to, and involved with, helping autistic children, is possible. Cures might be possible in future. Do not let a regressive ideology or one mother's fatigue and pessimism dissuade you from seeking to recover your child.

Avoid the horse and dolphin nonsense, for sure, but seek out credible, evidence based intervention and trained providers for your autistic child. And lobby your congressman or member of parliament to increase funding research into the causes of, and cures for, autism disorders.

Our children with autism disorders deserve our best, unfailing, and untiring efforts.

Do not, out of fatigue or fear, surrender to the ideology of defeat.

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Alternative Autism Treatment Researchers Claim Hodgepodge Of Autism Treatments Works

Dr. James Neubrander, a physician, and Dr. Philip De Fina, a clinical neuropsychologist, of Woodbridge, N.J gave a lecture today on Staten Island in which they claimed that a hodgepodge of treatments - a combination of changes in diet, vitamin supplements, hyperbaric oxygen therapy and shots of methylcobalamin -- a form of vitamin B-12 -- has changed lives. As reported on silive.com the researchers claim to be able to change the environment of the brain to help normalize electrical chemical activity, which brings about positive change.

The two alternative treatment researchers claim it could be decades before their theories are incorporated into mainstream science. Cost of treatment is expensive and is estimated to cost a couple of thousand dollars a month.

Step right up folks; get your hodgepodge of alternative autism treatments here.

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Translating Autism: An Autism Research Blog - Check It Out

A member of the Autism Awareness Facebook group posted about this autism resource blog Translating Autism: An Autism Research Blog. It is an informational blog intended to rapidly disseminate the latest scientific findings related to the nature, causes, & treatments of autism spectrum disorders.

The host of the blog claims to be a clinical psychologist and neuroscience researcher working at a large Midwest child psychiatric institute but is not an autism specialist. His/her name is not published on the site although it is available by email. The host also indicates that he/she is not a proponent of one cause over another, one treatment over another, one philosophy over another and takes no philosophical position simply translating research findings into applicable and useful information that could help parents, teachers, clinicians, and consumers make better informed decisions.

Looks like Translating Autism could be a valuable resource for anyone with an interest in autism.

I urge everyone to check it out.

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