MARY LOUISE KELLY, HOST:
Millions of families are trying to help their kids who have been diagnosed with developmental disorders like autism and ADHD. In the search for help, many consider approaches that lie outside the medical mainstream. One of them comes from a national franchise called Brain Balance.
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UNIDENTIFIED PERSON #1: If one hemisphere of the brain dominates the other, learning and behavior are affected. Brain Balance fixes this connection, resulting in a life-changing improvement.
KELLY: Over the past year, NPR's Chris Benderev has been investigating Brain Balance. He found the company's claims rest on shaky science. His story starts with one family who's spent thousands of dollars on the program to try to help their son.
CHRIS BENDEREV, BYLINE: When I first to get to Stephanie and Natalie's house outside Chicago, they try to explain to their sons who I am and why I'm here.
NATALIE: Right, so he's a radio reporter.
BENDEREV: But here's his way more interesting to two rambunctious boys - a fuzzy microphone cover.
UNIDENTIFIED CHILD #1: Fuzzy.
STEPHANIE: Stop. Stop.
UNIDENTIFIED CHILD #2: Hi.
NATALIE: Do you know what a reporter is?
UNIDENTIFIED CHILD #2: Yeah, like, a...
BENDEREV: So then they send their boys to go play in the basement.
NATALIE: So no music, guys, during the recording, OK?
BENDEREV: And eventually Stephanie, Natalie and I sit down in their living room. To protect their children's privacy, by the way, we're not using their last names or their kids' names. Stephanie starts their story back in 2011. That's when a doctor diagnosed her older son with an autism spectrum disorder. They were terrified.
STEPHANIE: It's, like, what is he going to be capable of? Is he going to have a buddy, a friend? Is he going to have a best friend?
BENDEREV: But Natalie says that the possible treatment was just as scary.
NATALIE: That doctor at that time - one of the things he said is, at some point, you may want to medicate him.
BENDEREV: Specifically, medicate their son with Prozac when he turns 7.
STEPHANIE: I'm like, Prozac is a very powerful drug for adults. Why would you give it to a 7-year-old? And I welled up with all of this emotion, and I said, I will not let that happen.
BENDEREV: Stephanie and Natalie were determined to avoid any medication, so they tried other things, like giving up gluten. And then one day at a gluten-free conference, they heard about something new called Brain Balance. Here's one of their TV ads featuring parent testimonials.
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UNIDENTIFIED PERSON #2: It will completely, absolutely, 100 percent change your life.
UNIDENTIFIED PERSON #3: If your child is struggling, Brain Balance works. Call 800...
STEPHANIE: We were very excited. I was very excited that maybe we found a solution that wasn't going to be about medicine.
BENDEREV: So they signed up and got their son evaluated at a center. And then they got his scorecard back.
NATALIE: Like, they gave you this two-page sheet of bubble charts, and a lot of those things - even though I have two masters' and a Ph.D., I needed them explained to me.
BENDEREV: The scorecard had lots of terms that they hadn't heard before, terms that most people haven't heard. Apparently their son had poor frontal lobe acquisition and unsuppressed Galant and asymmetric tonic neck reflexes. It sounded alarming, but the staff was friendly. Her son liked it - and best of all, no meds. And they say they were told Brain Balance's training program would treat his autism which was causing problems socially.
STEPHANIE: He would say things about not being able to make friends. Why aren't I invited to birthday parties? Why don't I have playdates? So those...
NATALIE: He'd see his little brother having those experiences, and he wasn't having them. And he couldn't understand why.
BENDEREV: Brain Balance did cost a lot. But...
STEPHANIE: At that point when you're talking about your child's self-esteem and knowing it's the most important thing, what are you going to do? Maybe work a few more years. Take a little bit out of your retirement so that maybe if you nip this thing in the bud, he's able to have a better life going forward.
BENDEREV: Did you have to do things like that - take money out of retirement?
STEPHANIE: At that time, that's what we did.
BENDEREV: They were not alone in taking that plunge. Brain Balance has over 110 centers in the U.S. and more on the way. It's not uncommon for parents to enroll their kids for at least six months, which costs about $12,000. Insurance doesn't cover Brain Balance, so everything is out-of-pocket. But the company says that its new theory of the brain has helped 25,000 kids so far, which makes it a pretty big player in the world of alternative therapies. So what is Brain Balance's program, and who came up with it?
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UNIDENTIFIED PERSON #4: Dr. Robert Melillo is here this morning. Doctor, good to see you this morning.
UNIDENTIFIED PERSON #5: It's nice to meet you.
ROBERT MELILLO: It's great to be here. I'm very excited.
BENDEREV: Robert Melillo created Brain Balance. He's a licensed chiropractor. And in the 1990s, he formed this grand theory about ADHD, autism, dyslexia and other developmental and learning disorders. He says they are all really the same problem - an imbalance in the brain. Specifically, one half or hemisphere becomes weaker than the other half. Here he is on local TV.
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MELILLO: So for instance, dyslexia, language problems, academic problems are really more left-brain delays. And on the other hand, we get someone with, like, ADHD or OCD or autism. They have a right-brain delay.
BENDEREV: At Brain Balance, they say they do a few different things to rebalance the brain. They modify diet - no gluten or dairy, a lot less refined sugar. They do academic tutoring, and they do something called sensorimotor training. To explain one aspect of it, think back to high school biology.
Maybe you remember how each half of your body is controlled by the opposite half of your brain. So for a boy with autism, which Brain Balance claims is a weak right brain, they try to activate the left side of his body. They'll have the boy wear sunglasses that only let in light to his left visual field or wear an armband that vibrates on his left arm or just stand on his left leg for a while. These activations, they say, will travel up and across to strengthen the right brain.
So the big question, is does Brain Balance work? Well, whenever Robert Melillo goes on local TV or radio to promote a new center, he says it's scientifically proven to deliver big results.
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MELILLO: Yeah, I mean, there's a lot of science underneath this, and again...
We've shown in our centers that we can correct these problems completely. We've proved that in research.
You know, most of the kids come in. They're on medication. And by the time they leave, they've been taken off that medication by their doctor.
BENDEREV: But NPR spoke to over a dozen experts in ADHD, autism and child psychology, and they say Brain Balance's science doesn't hold water. For one thing, Robert Melillo's theory is based on the popular myth that the left brain does logic, and the right brain does emotion. But Mark Mahone, a pediatric neuropsychologist at the Kennedy Krieger Institute, says...
MARK MAHONE: In virtually every activity that one does, both hemispheres of the brain are very, very active. And it's not as simple as just being a left or right hemisphere problem. You know, nothing is that simple.
BENDEREV: When you ask Brain Balance about their evidence, they point you to two studies which report a big improvement in ADHD symptoms after three months in the program - nothing on any other disorders yet, by the way. But those two studies have serious flaws. For one thing, the first study had Melillo as one of its authors.
JAMES MCGOUGH: You can't research your own product and declare it a success. That's not considered legitimate.
BENDEREV: That's Dr. James McGough. He's a child and adolescent psychiatrist at UCLA who's been studying ADHD and autism for decades. He and several other experts we talked to say the biggest problem with the first study was this. There was no control group of kids who didn't do Brain Balance. If you can't compare to a control, you can never know if any improvement is just a placebo effect. Dr. Paul Wang of the Simons Foundation has run a lot of clinical research on autism in his career. And he says another problem with this first study - parents were the ones scoring their kids' ADHD symptoms.
PAUL WANG: The parents know what treatment the child is getting, and if they hope the child will get better with the treatment, then that might be reflected on their scores.
BENDEREV: In other words, the parents might be scoring their kids higher because they want them to get better. Now, Brain Balance's second study did have a control group - kids who didn't do the program. But that's all that it had. It simply compared new kids to the kids from the first study three years earlier. Here's James McGough of UCLA again.
MCGOUGH: They did their one study, then they just found a bunch of other kids and compared them to those. That's not scientifically sound.
BENDEREV: Now, there is a new third study underway, but the results aren't in yet.
MCGOUGH: So this claim that this is evidence-based is somewhere between a fantasy and just a lie.
BENDEREV: When we asked to talk to Brain Balance about their science, they arranged an interview with their creator.
MELILLO: I'm Dr. Robert Melillo. I'm the co-founder of Brain Balance Achievement Centers, and I'm also associate professor at Northwest University.
BENDEREV: At Northwestern University?
MELILLO: No, at - actually, I'm sorry - at...
MELILLO: ...National University for Life Sciences (ph) in Chicago.
BENDEREV: We looked it up. He's adjunct faculty at the National University of Health Sciences in Chicago, which offers degrees in chiropractic, acupuncture and similar fields. And as a reminder, he is not a medical doctor. Melillo says that the experts we spoke with are, quote, "completely wrong about his program." He says he wishes he had better studies, but he says the company hasn't had enough resources to pay for those, and he didn't want to wait and deprive kids of something that in his eyes works. And he reminded me that Brain Balance has its own internal data from all the assessments it's ever run on kids.
MELILLO: We have something like 80,000 before-and-after assessments that we've looked at. The data is there. We have it. We see it. The best way to get it out there is another thing. This isn't just anecdotal. This is real.
BENDEREV: The data have not been published in a peer-reviewed academic journal. But Melillo disputes the idea that he's overstated the company's scientific legitimacy. He says he doesn't feel that he's misled anyone, and he feels that arguments about the science miss a more important point.
MELILLO: You know, we can go and argue. Parents are out there, and families are out there struggling and suffering. And they don't really give a crap about the data or the research, to be quite honest. They care about, what are you going to do for my kid? And when they go through it and they see the difference in their child, that's what matters to them.
BENDEREV: And Brain Balance says it has a lot of happy customers. The company says their average satisfaction rating is an 8.5 on a 10-point scale. We talked with 18 parents who enrolled their kids, and the majority were very pleased. But not everyone is satisfied.
STEPHANIE: We were like, this is not what we thought it was going to be. This is not working. And then we just said, we're done with this.
BENDEREV: Stephanie and Natalie stopped Brain Balance after six months. They'd spent over $15,000 at that point. And for what it's worth, they say they did notice that their son's sense of smell had improved. But that's not why they signed up.
UNIDENTIFIED CHILD #2: Mommy, did...
BENDEREV: They say their son has gotten better at socializing. He started sessions with a social worker at school, and he takes medications...
NATALIE: Hey, buddy. Will you take that for me, please?
BENDEREV: ...Not Prozac, which they've been so scared of. Their son's diagnosis eventually morphed into something closer to ADHD, and that's what he takes his meds for. On the day I arrived, their older son had just had his 10th birthday party.
Tell me about your birthday party today.
UNIDENTIFIED CHILD #2: Can I get a drink first? I'm...
BENDEREV: Yes, you may - very polite.
He says it was amazing. A bunch of his friends showed up, and everybody was playing video games and having a great time.
UNIDENTIFIED CHILD #2: I haven't had friends for a bit, as my mom has already told you, until I got my medicine. I got some treatment. I got help. Now I have tons of friends.
BENDEREV: His parents, Stephanie and Natalie, found a system that works for them, and they're glad to have Brain Balance behind them. The people they met at Brain Balance were clearly trying to help their son, they say. But they feel misled by how it was marketed.
NATALIE: You're reading the parent testimonials. You're caught up in the emotion of having maybe found something.
STEPHANIE: You want help for your child, and this is a company that claims to help your children. So that's what you're expecting.
NATALIE: So it's really good marketing to a desperate market.
BENDEREV: They say they were part of that market, and now they want others in it to hear their story. Chris Benderev, NPR News.
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