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Autism: Where's the Insurance Money?; Beyond Obesity; Interview With Karl Taro Greenfeld: Growing up with Autism

Aired April 3, 2010 - 07:30   ET


DR. SANJAY GUPTA, CNN HOST: Good morning. I'm Dr. Sanjay Gupta. Welcome to a place -- a special place where we learn how to live longer and stronger. I'm your doctor, but I'm also your coach.

That health care bill that we've been talking about for sometime is now law. We know that. But what is it going to be like? What's going to change for families who have children with autism? We are diving into some of the details.

And also, childhood obesity is something we talk about quite a bit on this program. Things are happening on the outside of the body but things on the inside, as well. We'll describe it to you.

And, finally, our medical mystery. A controversial question: Can a child recover from autism? We'll have some answers.

Let's get started.


GUPTA: Now, April is Autism Awareness Month as you may know. Yet even with raised awareness and recognition of autism, the money still doesn't seem to be there for children to get the treatment they need for their children.


GUPTA (voice-over): When he was born, Darien Sepulveda had his mother's personality and his father's eyes. For 18 months, he laughed, he cried. He even spoke. At two, it all disappeared.

ADA SEPULVEDA, MOTHER OF AUTISTIC CHILD: I was losing my child basically in front of my eyes. He was just dying on me.

GUPTA: Darien was diagnosed with autism.

A. SEPULVEDA: Open the ...


A. SEPULVEDA: Door, very good.

GUPTA: Now, Darien is 11.

A. SEPULVEDA: Come. GUPTA: His diagnosis began a financial spiral for his family, years of denied claims, unpaid bills, mortgages, loans and debt that has become untenable.

A. SEPULVEDA: I call him the billion-dollar baby or the billion- dollar boy because it's very costly.

UNIDENTIFIED MALE: Health insurance policies currently cover medical diagnosis and medical treatment for autism.

GUPTA: But many families say not all treatments are covered. For example, Darien's speech and neurologic problems and some medications were not paid for. Insurance companies say most autism treatments are experimental, unproven; covering them would cause everyone's insurance rates to spike.

A. SEPULVEDA: You don't tell a person that has a diabetic child, oh, well, you know, there is no cure for this. You give them insulin. You treat them.

UNIDENTIFIED FEMALE: Good job. Keep your fingers up.

UNIDENTIFIED MALE: Keep your fingers up.


GUPTA: Those insurance problems continue into the teenage years, into adulthood.

Seventeen-year-old Tyler Bell is about to graduate high school.

PETER BELL, FATHER OF AUTISTIC TEEN: Who is your favorite musician?


P. BELL: Tyler.

GUPTA: Peter Bell is Tyler's father. He's also a spokesperson for the advocacy group Autism Speaks. He's been fighting for insurance coverage for most of Tyler's life. Now, he's concerned about Tyler's transition to adulthood.

P. BELL: I've heard some people say, I hope my child dies before me. And I don't know any other disease or disorder where that's the case. That's my biggest fear, is that if we're not here to provide for him, who will?


GUPTA: So, the question is: what is really going do change for families struggling with autism right now? Now, we've looked through this 2,700-page bill. And I can tell you this: first of all, you're not going to find the word "autism" specifically referenced. However, as part of the legislation, behavioral health treatments, something people talk about quite a bit, are going to be required as part of some health care plans, but it's not universal, though, as far as we can tell.

Part of the problem seems to be this. Many insurance companies consider some of the therapies experimental and won't cover them. Now, the federal government is encouraging states to begin mandating autism coverage in their own personal states. Kansas, for example, took the first steps this week requiring the state employee health plan to cover autism treatments.

Now, we're going to stay on topic. In fact, later, my conversation with the man who has been through all the twists and turns in this autism struggle -- what it was like to grow up to someone he never played with, never connected with, but influenced him in ways that even he could not have imagined.

And also, we talk about it all the time, obesity. It can cut a young person's life short. But what exactly is happening inside the body? I'll explain.

That's next.


GUPTA: Every week at this time, I'm going to be answering your questions. Think of this as your own appointment -- no waiting, no insurance necessary.

Let's get right to it. Ed from Twitter writes this, "Does any part of health reform take effect before 2014?" A short answer to this is, yes. True, it's going to take years for this to be fully implemented, at least four years.

But the people who really are going to be impacted immediately are those who are sick and uninsured. They're going to benefit first from all of this. The reason being is something known as high risk pools. Now, these are government-backed insurance pools. We're putting money into this to make it easier for people who are sick to buy coverage.

Also, if you're someone watching, you have insurance and you get sick, insurance companies will no longer be able to drop -- also, the same insurance companies can no longer cap how much is paid out over a lifetime. And all of those changes should take place this year. This could help people who have seen your expensive illnesses.

Another change, as well -- the maximum amount of money you can set aside for your health savings account, these so-called flexible spending accounts, it's going to be $2,500, which is less than a lot of plans have now.

We are really committed to this. We're going to continue to bring you all the new health care information about how it's going to affect you and your health.

Stay with us for that.

(MUSIC) GUPTA: Obesity is a major contributor to just about every chronic disease you can name. Now, you know that by now and you also know that preventing obesity at the earliest ages can lower costs in the future. Unfortunately, for so many children, the ship is already sailing.

Now, I recently went inside a children's hospital to show the shocking reality of how extra weight is affecting one child's body.


GUPTA (voice-over): As a father of three, it's especially hard for me to hear these stories -- children dying far earlier than they should. In some cases, their lives cut short by decades. These are children, the worst case scenarios of the nearly one-third of American kids who weigh too much.

(on camera): But you see, the thing is, behind all those stats, behind all those numbers, are real stories. People are worried that what we're describing could happen to them.

Let's go meet somebody.

UNIDENTIFIED MALE: Hey, how are you?

GUPTA: How are you all doing?


GUPTA (voice-over): Just 12 years old and 250 pounds. Tiger Greene has a story -- call it the new American story.

TIGER GREENE, FIGHTING OBESITY: In our family, when you're happy, we eat. When you're sad, you eat. And when you just are watching TV, you eat, you know?

GUPTA (on camera): What did you eat?

GREENE: Lunch, I have like a big 15-ounce steak or something, and, like, five Sprites and stuff like that.

GUPTA: I have three kids, so I'm a last guy in the world who preaches about anything nowadays, because I know the reality. But, I mean, what were you thinking when you saw him eating that much?

BRIAN GREENE, TIGER'S DAD: As a parent, you know, you want to see your kids happy. And mistakenly, horribly mistakenly, when we were eating, we were happy. And somehow, that computed to be good parenting.

GUPTA (voice-over): Tiger's dad wishes he would have known this one startling fact. Children with an obese parent are 50 percent more likely to be obese themselves -- 50 percent.

(on camera): I think a lot of people focus on what's happening, what you look like on the outside of your body. But have you ever thought about what's going on the inside of your body?

T. GREENE: Not much.

GUPTA: Well, it's something I think I want to show you today. In fact, that's why we brought you here today to this hospital where we go and take a look and see what's happening to your heart, what's happening to your liver. See what you think, OK?


GUPTA (voice-over): It's hard to believe this is a child's liver. All of that white filled with fat -- fat not just on the outside of your body.

(on camera): That's happening inside of your body.

(voice-over): For me as a doctor, this is especially disturbing because we see this with patient who are typically decades older.

(on camera): This heart is having to work so hard, that muscle is just bigger and bigger and bigger, which in the heart is a bad thing. After a while, it's not going to be able to work as well.

T. GREENE: It's scary because I know that could be happening to me right now.

GUPTA: Can you imagine, as a child, ending up in a room like this? Doctors are worried that you might not even be able to survive.

DR. STEPHANIE WALSH, TIGER'S DOCTOR: One of those kids who has early death from cardiovascular disease.

GUPTA: So, when you say early death, I mean -- are you literally talking about people in the 30s having heart attacks? What does that mean?

WALSH: Well, this is pretty unprecedented. We haven't really seen 8-year-olds with type 2 diabetes. So, we don't actually know what's going to happen, but it's very concerning. The good news is, we can do something about it.

GUPTA (voice-over): Tiger has already started. For Tiger, it's a point of immense pride. He's now 30 pounds lighter. He has another 40 to go and all of those lost pounds are adding years to his life and changing his body on the outside and the inside, as well. They were rapidly aging a boy into a sick, old man way before his time.

And that smile -- well, it means he's peeling off the pounds and those years.


GUPTA: And some good lessons and reminders in there for all of us, I think.

Now -- his hopes, dreams and the reality of life with a brother with autism. My conversation with author Karl Greenfeld -- we have that after the break.

Stay with us.


GUPTA: And we are back with SGMD.

You know, one of the hardest stories to cover in medical news, one of the hardest stories that I have covered the last couple of years is the whole mystery surrounding autism. It's a neurological disorder. It's not well understood. The affects of which can be mild and sometimes, devastating as many people know.

Now, these stories are hard to miss, whether it's an epidemic or the doctors are just more aware. Diagnoses are up a lot -- tenfold maybe over the past 20 years.

There's no one who knows this whole story like my guest today. Karl Taro Greenfeld, he is the author of most recently of "Boy Alone." And subtitle is "A Brother's Memoir." And that's what it is, really, it's a remarkable family.

Thanks so much for joining us.


GUPTA: I've really been looking forward to this.

I read your book. It's about your brother. Your brother has autism.

How was he diagnosed?

GREENFELD: He was diagnosed in the late '60s, at a time when autism was considered a very rare disorder. I think doctors then believed it was one in 20,000 rate of diagnosis.

GUPTA: Did your parents come out and tell you at some point that something was -- that something -- how did they tell you? Or did they tell you?

GREENFELD: I remember a conversation we had around a kitchen table where something along the lines of Noah's sick. Noah's very sick. And, I was aware of Dr. Spock at that point. I was -- we had a -- I said, can't you look in the Dr. Spock book? Can he -- isn't there something we can do for Noah, you know, from there?

And, and then sort of it dawned on me over, I guess, whatever that year or two years that, well, whatever Noah had was not -- it was permanent.

GUPTA: What is Noah -- where does he fall in the spectrum? What are his capabilities?

GREENFELD: Noah's a low-functioning, non-verbal autistic man. He knows me. He knows my parents. He knows us. He has great difficulty communicating his wants and desires. He -- you know, he -- if you meet him, he physically appears normal. He has no physical symptoms, but you can tell pretty quickly he is profoundly disturbed.

GUPTA: Is he happy? Can you tell?

GREENFELD: You can always tell whether Noah is happy or unhappy. If he's unhappy, he lets you know it, sometimes by lashing out and grabbing you or spitting at you. And if he's -- but if he's happy, he's beaming and smiling and giggling. There's very little filter on Noah. He doesn't hide his moods at all and that sort of makes him the center of our family dynamic.

GUPTA: Your parents after so many years now, you said your dad's in his 80s and your mom in their 70s -- are they still, you know, doing exactly what you said on the Internet, looking for ...

GREENFELD: Well -- I mean, my father wrote three stories of autism. And the back story to "Boy Alone" is that Noah, my father wrote three books about our family when I was growing up. My brother was one of the most famous autistic kids in the '70s probably.

My father still periodically is asking me about what do you think about this treatment? We heard about this. My mother says you heard about this vitamin or that vitamin and wonders whether, you know, it can promote, you know, more synaptic activity, and that might be the key to unlocking Noah.

At this point, though -- I mean, I think I'm -- having watched this my whole life, I'm a little bit cynical that that magic bullet is going to -- is going to now appear.

GUPTA: A lot of people think -- when they think of autism, they think of children, young children. He's obviously in his 40s now.

GREENFELD: He's in his 40s. Yes.

GUPTA: What was that like? I mean, people don't seem to pay attention as much to ...

GREENFELD: Well, I was surprised at how widely held the notion it is a childhood disorder. That somehow you grow out of it because, you know, Noah's disability was so profound. One thing I tried to write about in this book is to talk to families who maybe have a teenaged autistic son or daughter now, and talk a little bit about what that journey is in adulthood, and how you're going -- your life as a sibling or as a parent of an autistic person is going to some extent always revolve around that person.

GUPTA: All right. We got to take a short break now, but we're going to be back in a moment with Karl Taro Greenfeld. I'm going to start by asking him what he learned writing the "TIME" story on Jenny McCarthy. I can tell you it was controversial for sure. We'll get to that next.

Stay with us.


GUPTA: And we are back with SGMD.

A fascinating discussion with Karl Taro Greenfeld -- about your brother Noah. Your parents, as well, who are still involved with this, like helping care for him. Your mom was looking for anything to try and help your brother.

In the time it was covered in this book and the years since, did they find anything that seemed to work for Noah?

GREENFELD: We would find, you know, briefly, a new school or a new treatment that seemed to make a little bit of headway and then there would -- this is common with autism -- then there'd be sort of a period of advance and then a period of aggression. And so, we never found the magic bullet that every parent hopes for, and still hopes for. I mean, I think that's -- you know, fondest wish of every parent, especially if their child is non-verbal, is that they can somehow talk to him.

And my father still dreams of talking to Noah. And I think it's our family's great dream is to be able to talk to Noah and to find out what Noah's thinking or what he's been thinking all of these years.

GUPTA: Part of the reason I ask because I -- you know, I read you're -- the "TIME" magazine story that you write about Jenny McCarthy. You were pretty hard on her in the column. She's tried all sorts of different -- talked about all sorts of different therapies much in the way that you chronicle your own family's decisions, plans with Noah at different times. But, what is wrong with what she's doing?

GREENFELD: I don't think there's anything wrong with what she's doing. I mean, I think she's doing what she believes in. She believes that vaccine caused Evan's autism, and to separate that a second -- to separate her vaccine views a little bit from her views on treatment, I think her views on therapy and treatment are very much in the mainstream. I don't think they're extreme at all.

I think what she says is you try everything.

GUPTA: And for the record, I -- you know, I have three children and we got our kids vaccinated fully and on schedule.

GREENFELD: I got my kids vaccinated because I -- you know, I believe -- I believe in vaccines. But I can understand parents who feel that something has happened to their kid because of a shot they received.

GUPTA: "Boy Alone." Your brother's keeper, you mentioned that earlier. What is that?

GREENFELD: He's in a supportive living home. He's in a good situation now. We have to maintain a steady vigilance regarding Noah's treatment and care. All of his medical issues are further complicated by the fact you can't ask the patient, where does it hurt? So I think there's a lot of sort of day-to-day vigilance on that level. If something happens to me, this responsibility passed on to my daughters.

GUPTA: Right.

GREENFELD: I don't -- I don't -- you know, these issues are all unresolved. And as a society, we're going to see more and more families wrestling with precisely these issues. I mean, every autistic parent who has an autistic child and normal children always wrestle with how much responsibility do you put on the normal kids, and when you put it on them.

GUPTA: Well, it's part of the story that we probably don't cover enough as medical journalists. But it's a fascinating book. "Boy Alone: My Brother's Memoir." I'll pay more attention to this issue as well.

Thanks so much for being on the show.

GREENFELD: Thank you so much.

GUPTA: Yes, fascinating discussion.


GUPTA: We a lot of news out this week about multivitamins. Something you may try and take to try and stay healthy -- pretty shocking then to hear about a possible link to cancer, specifically breast cancer.

Couple points here. First of all, this was an association and not a cause and effect study. Meaning, it's tough to say that multivitamins are causing cancer. And there had been studies in the past showing no association at all between multivitamins and cancer. So, it's confusing.

But it got us thinking, while multivitamins are not necessarily for everyone, they are a good idea for some people. For example, pregnant women, seniors, people with G.I. disorders and people with restricted diets.

And, again, as I've mentioned before, multivitamins are never as good as eating your fruits and vegetables. See, it's just tough to get the good stuff out of food and put it into a pill form. So, the greener, the leafier, the more raw, the better.

Now a controversial topic: autism, and whether someone can actually recover from the disorder. That's our medical mystery. We have the answer right after the break.


GUPTA: And we are back with SGMD.

New numbers, new fears and but also some hope for Haiti.

First, the numbers. Right now, more than 1 million people remain displaced without homes. Just think about that number -- 1 million people. The January 12th earthquake killed more than 200,000 people.

And this week at a U.N. conference, international donors pledged nearly $10 billion in long-term assistance to help rebuild that country. But as I told you so many times before, we are heading straight into rainy season in that country. And with so many displaced, that can quickly turn deadly.

I'm heading back next week to bring you the latest on what's being done to help and how your money is being spent as well. Be sure to tune in next week for that.

Going to our "Medical Mystery" now. It comes from an e-mail that we received and really wanted to focus on. It asks this question, "Can someone recover from autism?"

Wendy from Detroit writes specifically, "I have a daughter that I was told was autistic when she was younger, but now that she's grown, I'm being told she is not and likely never was autistic. I'm told her only issue was language processing. I don't know whether to consider misdiagnosed or recovered autistic?"

Now, of course, Wendy, as you might guessed, without meeting and assessing your daughter, it's difficult for anyone to determine if your daughter was, in fact, misdiagnosed or not. But here are some things I can tell you. According to experts that we've spoken with, there's no specific cure for autism. So, if you're born with it, you're likely to always have it. But it may become very mild, almost to the point of being undetectable.

If it's diagnosed early, around age two, your child gets early therapy, it's possible, in some cases, for child's symptoms to improve so much that he or she no longer meets the criteria for autism. Some call this recovery and estimate this can happen to maybe 10 percent of children who fall under the entire autism spectrum.

It is possible as well that a child was misdiagnosed as having autism or actually having a different developmental disorder altogether.

So, I hope that helps you.

Now, if missed any part of today's show, be sure to check out my podcast,

And remember, always, this is the place for the answers to all of your medical questions. Thanks for watching. I'm Dr. Sanjay Gupta.

More news on CNN starts right now.