Nothing is avoided more by licensed mental health and medical professionals than the use of testimonials. Many state licensing and registration boards forbid this practice by statute for licensed professionals. Think, do you ever see a brain surgeon, pediatrician, general practitioner or a lawyer using testimonials on their web pages or in ads? They don’t because they are perceived as unethical. Why? They mislead the public into thinking the results touted in the testimonial (It worked for me!) are typical or expected results. Maybe Tony’s Car dealership can use testimonials, but Tony’s doctor can’t. Testimonials are misleading, plain and simple.
There are two other problems: 1) Asking for or getting testimonials from patients puts the patient in a poor situation in terms of "balance of power" with their provider, leaving them vulnerable. Think how difficult would it be to ask for your testimonial back? And 2) It is a basic rule of science that this kind of data is often, OFTEN, misleading. Science isn't about perceptions of those being tested or treated, it's about comparing groups, comparing treatments and using scientifically accepted methods like double blinded studies to look at the information and data. Science involves what are know as “controlled studies,” and testimonials can often be is complete disagreement with what science ends up telling us. So if your going to tell people about a new idea, a new treatment, you should tell them about the studies.
The Brain Balance web page is heavy on the testimonials and by using these testimonials publicly this company sets parents of children with autism, Asperger's and ADHD who gave these statements against those who question their perceptions based upon the science. We know there is serious disagreement on the effectiveness of these expensive and time consuming treatments. Why are we putting parents in the middle of this debate instead of scientists and data? These parents are taken advantage of and put in a position to defend their perceptions against others who either have different perceptions, or who have different facts based upon research. That's the ethical problem with testimonials. It's just plain wrong.
But this says nothing yet about Brain Balance and whether it works or not. If you can’t rely on the parent testimonials (and really, for what other serious life effecting illness would you rely upon testimonials for your decision?) what can you rely upon? Well, I rely upon the scientific community’s opinion. The opinion of experts and practitioners in the field.
Doing a web search about Brain Balance and autism or ADHD and you find many, many web pages with statements supporting it. Especially those connected with reviews of books by the "inventor" of this process and from the home pages for the many franchises. Of course, almost all of those are: “testimonials.” But besides all these glowing testimonials lets look at what some others say about this program (and the many other similar ones cropping up all over our area offering "brain tuning" and "balancing" services through a computer and your credit card:
Heres some excerpts from one, I found this in the Journal Sentinel, by Guy Boulton (Nov 14, 2010):
"The Brain Balance Achievement Center, a franchise that opened in Mequon last summer, offers a program that it contends can help children overcome attention deficit hyperactivity disorder, dyslexia, Asperger's syndrome, Tourette syndrome, autism and other disorders. The 12-week program - costing $6,000, plus roughly $125 to $500 in nutritional supplements - purportedly does this by addressing an imbalance between the right and left sides of the brain that it calls "functional disconnection syndrome."
The program is based on the contention that ADHD, dyslexia, autism and other disorders all result from this syndrome. "That functional disconnection syndrome basically states in the literature that the two sides of the brain are not communicating effectively together due to the fact that one side of the brain is actually maturing at a faster rate than the other side," said Jeremy Fritz, a chiropractor and co-owner of a franchise.”
Yep, this is a franchise offering neuropsychological or rehab like programs for learning disabilities developed, owned and operated by a chiropractor. i honestly find that confusing. Go to their corporate site and you'll see how this program is promoted ...like burgers!
Now lets get straight that the "literature" consists of one study of children with ADHD, co-authored by the program's founder, published in an obscure journal based in Tel Aviv, Israel. If your thinking about this program and based upon the testimonials think it’s a good idea, I suggest “balancing” that information with opinions from professionals not associated with the franchise itself. See Dr. Harriet Hall's review of this study in Science-Based Medicine. Click here to get to that webpage.
If you look through the medical and neuropsychiatric or psychological literature you will find no studies in respected, peer-reviewed journals that contend ADHD, dyslexia, autism and other disorders stem from the development of one side of the brain faster than the other. "None of the neuro research would even come close to suggesting that," said Mina Dulcan, a professor at Northwestern University's Feinberg School of Medicine and the head of the child and adolescent psychiatry program at Children's Memorial Hospital in Chicago. "The notion that one half of the brain developed faster than the other just doesn't fit with anything we know about the brain," Dulcan said.
Dr. Harriet Hall (see above) says, "There is absolutely no evidence for that and no reason to think it should be true."
In my own two post doctoral years of study in neuropsychology I never heard of this, ever.
So how do we go from a theory that is supported by one article published by the guy who started the company to 25 or more franchises across the United States run by individuals who aren't experts in neuroscience using parent testimonials as their main point of evidence and get away with it? If these doctors are right and there is no basis for this treatment, how can it be out there? Well Brain Balance is a "supplemental learning center" and not a medical treatment, so they don’t need all those rules and regulations. In many communities these programs are full, with waiting lists!
“The program consists of 36 sessions over 12 weeks. It begins with a two-day assessment, costing $325, of every area of the child's brain and how it performs. This includes assessing the child's motor skills, timing and rhythm, and how he or she visually and verbally processes information.” And is this done by licensed psychologists, or medical doctors? Maybe, maybe not. Depends I guess on who opened the franchise, right? Other news reporters claim that some of the centres also sends a urine sample to a lab in Georgia to be analyzed to develop a customized vitamin and mineral supplement and a customized amino acid supplement. A three-month supply of those supplements costs $125 to $500.
The 36 sessions take place three days a week. A staffer works with two children at a time. The children spend 30 minutes in the "sensory-motor room" and 30 minutes in the "neuro-cognitive room." The sessions include exercises for motor skills, balance, body-sense awareness, timing and rhythm - "all with what we call a 'hemispheric basis,' " Fritz said. Now I urge you to read what Harriet Hall says about this "hemispheric basis" of the treatment. She, and other neuro scientists claim it makes no sense at all.
What does Steven Novella, a licensed neurologist who does research and maintains a practice say about this? "On the website, they make a lot of bold claims, but they are backed largely by anecdotes, by stories," Novella said. "Of course, stories are great for marketing. People love stories. They find them very compelling." (He can also be found on the Science-Based Medicine and Neurologica blog sites. "You really can't back claims on anecdotes," he said. "What do they have for science to back up their claims? Almost nothing." For one thing, there is no scientific evidence that attention deficit hyperactivity disorder, dyslexia, Asperger's syndrome and Tourette syndrome are caused by "functional disconnection syndrome....There's no commonality," Novella said.
Fritz contends that the improvement in the children who have been through the program shows that the underlying ideas are valid. This is not how we usually test and verify treatments. Novella said, "Even if they thought their ideas were right, what they should be doing is studying them in a rigorous way. Instead they are writing books and selling franchises....That should tell you something about where they are coming from....I see claims like this all the time," Novella said, "and they do follow a specific pattern....they ....offer desperate parents a relatively simple treatment - one that doesn't require drugs - based on an appealing premise...You hit them with exactly what they want to hear," Novella said. "They have a good sales pitch. They don't have the science to back that up. But people don't care about that."
Of course Fritz disputes that. "The whole program," he said, "is based on an understanding of the science." Now he acknowledged that there are no studies in peer-reviewed journals backing Brain Balance's claims. But the centers are developing methods to track their outcomes. And he admitted that the program eventually will need to publish studies of its results in respected journals to win broader acceptance.
So as a parent, what are you to do? Should you put down $6,000 and a year of your child's life to get them into one of these programs (and Brain Balance, let me say again, is just one of many programs like this opening shop at a mall near you). The problem with this is that parents use all of their available resources on an unproven treatment program instead of a more conventional intervention that may take time, take a lot of effort and may involve doing things your uncomfortable about, like trying medications. What we know is there already are medical and behaviour based programs that work for kids with ADHD, autism and Asperger's Disorder. Check government websites for information on what programs are available, and when you do get to a site like the National Institute for Health (NIH) or National Institute for Mental Health (NIMH) or CHAAD or other mainstream sites, you will always find one suggestion: Use programs that are supported by scientific evidence, by double blinded studies and studies that have been replicated.
My second bit of advice, when trying to decide who is right, the neurologists and medical doctors like Dr. Novella and Dr. Hall, or the list of positive testimonials provided by the franchise, print out information about the programs, including both sides of the argument, and take it to your medical doctor. Ask him or her. I would rather rely upon the expertise of my medical doctor in a matter this important than "Nancy, the mother of an 8 year old" who noticed her son's behaviour improved after 6 months went by. There are people who understand research who you can ask. Start there! Either Dr. Novella is right, or Dr. Melillio is right. Your problem is how to decide based upon the science. Your family physician is a good place to start.
...............................................................
My web page lists a number of resources you can make use of yourself in dealing with Attention Deficit Hyperactivity Disorder (ADHD). Please visit it at www.adhdhelp.ca or one of my other sites at either Psychology Today, AAMFT, PSYRIS or my professional site.
Attention Deficit Hyperactivity Disorder (ADHD) assessment and treatment services are offered for individuals, couples, families, children and adolescents in the Burnaby, Vancouver, Coquitlam, Port Moody, New Westminster and Maple Ridge areas of the lower mainland. This includes neuro-developmental assessments, psycho-education and cognitive behaviour therapy. I also provide diagnostic assessments for autism and Asperger's Disorder in my Burnaby office.
Dr. Jim Roche
Registered Psychologist, British Columbia 01610
778.998-7975
www.relatedminds.com
There are two other problems: 1) Asking for or getting testimonials from patients puts the patient in a poor situation in terms of "balance of power" with their provider, leaving them vulnerable. Think how difficult would it be to ask for your testimonial back? And 2) It is a basic rule of science that this kind of data is often, OFTEN, misleading. Science isn't about perceptions of those being tested or treated, it's about comparing groups, comparing treatments and using scientifically accepted methods like double blinded studies to look at the information and data. Science involves what are know as “controlled studies,” and testimonials can often be is complete disagreement with what science ends up telling us. So if your going to tell people about a new idea, a new treatment, you should tell them about the studies.
The Brain Balance web page is heavy on the testimonials and by using these testimonials publicly this company sets parents of children with autism, Asperger's and ADHD who gave these statements against those who question their perceptions based upon the science. We know there is serious disagreement on the effectiveness of these expensive and time consuming treatments. Why are we putting parents in the middle of this debate instead of scientists and data? These parents are taken advantage of and put in a position to defend their perceptions against others who either have different perceptions, or who have different facts based upon research. That's the ethical problem with testimonials. It's just plain wrong.
But this says nothing yet about Brain Balance and whether it works or not. If you can’t rely on the parent testimonials (and really, for what other serious life effecting illness would you rely upon testimonials for your decision?) what can you rely upon? Well, I rely upon the scientific community’s opinion. The opinion of experts and practitioners in the field.
Doing a web search about Brain Balance and autism or ADHD and you find many, many web pages with statements supporting it. Especially those connected with reviews of books by the "inventor" of this process and from the home pages for the many franchises. Of course, almost all of those are: “testimonials.” But besides all these glowing testimonials lets look at what some others say about this program (and the many other similar ones cropping up all over our area offering "brain tuning" and "balancing" services through a computer and your credit card:
Heres some excerpts from one, I found this in the Journal Sentinel, by Guy Boulton (Nov 14, 2010):
"The Brain Balance Achievement Center, a franchise that opened in Mequon last summer, offers a program that it contends can help children overcome attention deficit hyperactivity disorder, dyslexia, Asperger's syndrome, Tourette syndrome, autism and other disorders. The 12-week program - costing $6,000, plus roughly $125 to $500 in nutritional supplements - purportedly does this by addressing an imbalance between the right and left sides of the brain that it calls "functional disconnection syndrome."
The program is based on the contention that ADHD, dyslexia, autism and other disorders all result from this syndrome. "That functional disconnection syndrome basically states in the literature that the two sides of the brain are not communicating effectively together due to the fact that one side of the brain is actually maturing at a faster rate than the other side," said Jeremy Fritz, a chiropractor and co-owner of a franchise.”
Yep, this is a franchise offering neuropsychological or rehab like programs for learning disabilities developed, owned and operated by a chiropractor. i honestly find that confusing. Go to their corporate site and you'll see how this program is promoted ...like burgers!
Now lets get straight that the "literature" consists of one study of children with ADHD, co-authored by the program's founder, published in an obscure journal based in Tel Aviv, Israel. If your thinking about this program and based upon the testimonials think it’s a good idea, I suggest “balancing” that information with opinions from professionals not associated with the franchise itself. See Dr. Harriet Hall's review of this study in Science-Based Medicine. Click here to get to that webpage.
If you look through the medical and neuropsychiatric or psychological literature you will find no studies in respected, peer-reviewed journals that contend ADHD, dyslexia, autism and other disorders stem from the development of one side of the brain faster than the other. "None of the neuro research would even come close to suggesting that," said Mina Dulcan, a professor at Northwestern University's Feinberg School of Medicine and the head of the child and adolescent psychiatry program at Children's Memorial Hospital in Chicago. "The notion that one half of the brain developed faster than the other just doesn't fit with anything we know about the brain," Dulcan said.
Dr. Harriet Hall (see above) says, "There is absolutely no evidence for that and no reason to think it should be true."
In my own two post doctoral years of study in neuropsychology I never heard of this, ever.
So how do we go from a theory that is supported by one article published by the guy who started the company to 25 or more franchises across the United States run by individuals who aren't experts in neuroscience using parent testimonials as their main point of evidence and get away with it? If these doctors are right and there is no basis for this treatment, how can it be out there? Well Brain Balance is a "supplemental learning center" and not a medical treatment, so they don’t need all those rules and regulations. In many communities these programs are full, with waiting lists!
“The program consists of 36 sessions over 12 weeks. It begins with a two-day assessment, costing $325, of every area of the child's brain and how it performs. This includes assessing the child's motor skills, timing and rhythm, and how he or she visually and verbally processes information.” And is this done by licensed psychologists, or medical doctors? Maybe, maybe not. Depends I guess on who opened the franchise, right? Other news reporters claim that some of the centres also sends a urine sample to a lab in Georgia to be analyzed to develop a customized vitamin and mineral supplement and a customized amino acid supplement. A three-month supply of those supplements costs $125 to $500.
The 36 sessions take place three days a week. A staffer works with two children at a time. The children spend 30 minutes in the "sensory-motor room" and 30 minutes in the "neuro-cognitive room." The sessions include exercises for motor skills, balance, body-sense awareness, timing and rhythm - "all with what we call a 'hemispheric basis,' " Fritz said. Now I urge you to read what Harriet Hall says about this "hemispheric basis" of the treatment. She, and other neuro scientists claim it makes no sense at all.
What does Steven Novella, a licensed neurologist who does research and maintains a practice say about this? "On the website, they make a lot of bold claims, but they are backed largely by anecdotes, by stories," Novella said. "Of course, stories are great for marketing. People love stories. They find them very compelling." (He can also be found on the Science-Based Medicine and Neurologica blog sites. "You really can't back claims on anecdotes," he said. "What do they have for science to back up their claims? Almost nothing." For one thing, there is no scientific evidence that attention deficit hyperactivity disorder, dyslexia, Asperger's syndrome and Tourette syndrome are caused by "functional disconnection syndrome....There's no commonality," Novella said.
Fritz contends that the improvement in the children who have been through the program shows that the underlying ideas are valid. This is not how we usually test and verify treatments. Novella said, "Even if they thought their ideas were right, what they should be doing is studying them in a rigorous way. Instead they are writing books and selling franchises....That should tell you something about where they are coming from....I see claims like this all the time," Novella said, "and they do follow a specific pattern....they ....offer desperate parents a relatively simple treatment - one that doesn't require drugs - based on an appealing premise...You hit them with exactly what they want to hear," Novella said. "They have a good sales pitch. They don't have the science to back that up. But people don't care about that."
Of course Fritz disputes that. "The whole program," he said, "is based on an understanding of the science." Now he acknowledged that there are no studies in peer-reviewed journals backing Brain Balance's claims. But the centers are developing methods to track their outcomes. And he admitted that the program eventually will need to publish studies of its results in respected journals to win broader acceptance.
So as a parent, what are you to do? Should you put down $6,000 and a year of your child's life to get them into one of these programs (and Brain Balance, let me say again, is just one of many programs like this opening shop at a mall near you). The problem with this is that parents use all of their available resources on an unproven treatment program instead of a more conventional intervention that may take time, take a lot of effort and may involve doing things your uncomfortable about, like trying medications. What we know is there already are medical and behaviour based programs that work for kids with ADHD, autism and Asperger's Disorder. Check government websites for information on what programs are available, and when you do get to a site like the National Institute for Health (NIH) or National Institute for Mental Health (NIMH) or CHAAD or other mainstream sites, you will always find one suggestion: Use programs that are supported by scientific evidence, by double blinded studies and studies that have been replicated.
My second bit of advice, when trying to decide who is right, the neurologists and medical doctors like Dr. Novella and Dr. Hall, or the list of positive testimonials provided by the franchise, print out information about the programs, including both sides of the argument, and take it to your medical doctor. Ask him or her. I would rather rely upon the expertise of my medical doctor in a matter this important than "Nancy, the mother of an 8 year old" who noticed her son's behaviour improved after 6 months went by. There are people who understand research who you can ask. Start there! Either Dr. Novella is right, or Dr. Melillio is right. Your problem is how to decide based upon the science. Your family physician is a good place to start.
...............................................................
My web page lists a number of resources you can make use of yourself in dealing with Attention Deficit Hyperactivity Disorder (ADHD). Please visit it at www.adhdhelp.ca or one of my other sites at either Psychology Today, AAMFT, PSYRIS or my professional site.
Attention Deficit Hyperactivity Disorder (ADHD) assessment and treatment services are offered for individuals, couples, families, children and adolescents in the Burnaby, Vancouver, Coquitlam, Port Moody, New Westminster and Maple Ridge areas of the lower mainland. This includes neuro-developmental assessments, psycho-education and cognitive behaviour therapy. I also provide diagnostic assessments for autism and Asperger's Disorder in my Burnaby office.
Dr. Jim Roche
Registered Psychologist, British Columbia 01610
778.998-7975
www.relatedminds.com