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We Have Autism

Aired April 2, 2008 - 12:00   ET


TONY HARRIS, CNN ANCHOR: Now in the news, a passenger at Orlando's Airport was in court briefly this morning. He's accused of checking luggage containing materials for making a bomb. His bond hearing was delayed until tomorrow.
If you are flying United Airlines today, you may be waiting. The airline pulling all of its Boeing 777s out of service for safety checks. United says the plane's cargo fire suppression systems are being examined.

Mission: damage control. The nation's top banker on the economy and what's being done to keep it from getting worse. Ben Bernanke telling lawmakers the Federal Reserve will do whatever it takes to limit the housing and credit crises. He delivered his gloomiest assessment yet saying recession is possible.

I'm Tony Harris.

The CNN special "We Have Autism" starts in ...



WOLF BLITZER, CNN ANCHOR: Every 20 minutes ...

UNIDENTIFIED FEMALE: Every 20 minutes ...

COLLEEN MCEDWARDS, CNN INTERNATIONAL ANCHOR: Every 20 minutes, a child is diagnosed with autism.

UNIDENTIFIED FEMALE: This is an epidemic that is sweeping the globe.

RICHARD ROTH, CNN CORRESPONDENT: In the U.S. alone, more children will be diagnosed ...

KIRAN CHETRY, CNN ANCHOR: More children will be diagnosed with autism this year than AIDS ...

UNIDENTIFIED FEMALE: ...than AIDS, diabetes ...

UNIDENTIFIED FEMALE: ...diabetes and cancer combined.

UNIDENTIFIED FEMALE: Why? The truth is ...

DR. SANJAY GUPTA, CNN CHIEF MEDICAL CORRESPONDENT: The truth is, no one really knows.

UNIDENTIFIED MALE: As many as one in 150 children ...

HARRIS: in 150 children ...

ANEESH RAMAN, CNN MIDDLE EAST CORRESPONDENT: in 150 children are on the autism spectrum.

ANDERSON COOPER, CNN ANCHOR: But autism remains a medical mystery.

UNIDENTIFIED FEMALE: And for the parents, the questions are endless.

FREDRICKA WHITFIELD, CNN ANCHOR: How will my child learn?


UNIDENTIFIED FEMALE: And will family and friends still think of us as normal?

SOLEDAD O'BRIEN, CNN SPECIAL CORRESPONDENT: I'm Soledad O'Brien. My nephew is autistic.

JOHN DEAR (ph): I'm John Dear and my son has autism.

CAMPBELL BROWN, CNN ANCHOR: At CNN, it's time to find answers.

HEIDI COLLINS, CNN ANCHOR: Because for us ...

DON LEMON, CNN ANCHOR:'s personal.

ROBIN MEADE, CNN ANCHOR: Because for us, it is personal.


MCEDWARDS: I'm Colleen McEdwards. Welcome to what we hope will be an informative and inspiring hour of television on a medical mystery the world is beginning to unravel. We call our program "We Have Autism." In fact, at CNN, it was our own staff, parents who have children with autism who motivated us to come here to Atlanta's Marcus Institute to learn more.

Over the next hour, CNN correspondents all around the world will show us some amazing medical breakthroughs in the treatment of autism, but also the immense financial and emotional hardship that it takes on families.

And we hope that this hour may inspire you to do something to help.


GUPTA: When Hunter, Nicholas and Zachery Gaston were born seven years ago, their parents Lynn and Randy were ecstatic. They had waited years to have a baby. For the first 18 months, the boys were typical toddlers. Then something changed.

LYNN GASTON, TRIPLETS' MOTHER: It was almost as if a switch, somebody came to our house and turned the switch off. The boys, it was almost as if the first 18 months of their life didn't happen.

GUPTA: Lynn noticed her sons were developing antisocial behavior that scared her. Hunter was licking the wall. Nick wouldn't speak. She went online and typed in their symptoms.

GASTON: No matter how many times I changed the symptoms around or left one or two off, it kept coming back autism.

GUPTA: The Gastons insisted their children were autistic. Yet their pediatrician advised the family to wait and see. As each month progressed, they became more frustrated, visiting doctors who had no answers. Finally a specialist in Baltimore, Maryland, confirmed their fears. All three sons had some variation of autism.

GASTON: There is no autism on either side of the family. We've looked.

GUPTA: Before their babies were born, Lynn and Randy never heard the word autism. Now they were faced with raising three autistic children. That was tough enough, but even after the diagnosis it was hard to find any information on the condition.

GASTON: It's not like you can look up autism in the phone book. I couldn't go to the yellow pages and find a doctor I didn't even know what kind of doctor to go see. I thought my pediatrician was going to handle all of this.

GUPTA: That's because until recently there's been very little information on autistic children. The Centers for Disease Control has only been taking data since 2001, the year the Gaston triplets were born. And autism is difficult to diagnose. The conditions offers a wide range and children often display different symptoms.

In the Gaston's case, Zach is very smart, but had mood swings and shows obsessive behavior. Hunter lets out terrible screams and roams the house at night. Until recently, Nicholas refused to speak.

DR. GARY GOLDSTEIN, PRESIDENT, KENNEDY KRIEGER INSTITUTE: We don't have an easy handle on it. In autism, we don't have a test. We don't have a biopsy. We don't have an image.

GUPTA: Although research points to genetic abnormalities in the development of autism, doctors still believe a trigger sets off autism in a child. It's the trigger that's the mystery.

GOLDSTEIN: It's a combination of being genetically vulnerable and then having some kind of social or toxin exposure that tips you over.

GUPTA: Some parents believe thimerosal, a preservative once found in some childhood vaccines, causes autism because many were diagnosed after they were vaccinated. Most medical experts believe that theory doesn't hold true anymore if it ever did because mercury has been removed from virtually all vaccines except for the flu vaccine.

GASTON: Good job.

GUPTA: But the number of cases of autism is still growing.

RANDY GASTON, TRIPLETS' FATHER: There is something that affecting all these children. It's unfortunate that these families are left to their own device to find out what's going on.

GUPTA: Today, the Gaston's remain dedicated to getting their sons the best care possible. Zach is mainstreamed in a public school. Hunter and Nick attend a special program.

Financially, autism has been a burden on the family. They were forced to sell their home to pay bills, some totaling in the hundreds of thousands of dollars.

Even though Lynn and Randy know it will be years before their sons can live anything resembling normal lives, they have not given up hope. Even with all the therapists and doctors who are helping them cope with the mystery of the condition, they know it's love that gets their family through the day.

GASTON: What they get to know the rest of their life that I did everything for them. That's all it ever comes down to. That I did everything for you, buddy. Right? Yes. Yeah, OK. You are a good boy. I love you. Give me a hug?


JOHN FLOYD, MARCUS INSTITUTE: Early intervention is our opportunity to take children as early as 18 months and teach them the basic life skills.

UNIDENTIFIED FEMALE: You are going to share the yellow one.

FLOYD: These kids made a lot of progress. They can stay with us until they are eight.

UNIDENTIFIED FEMALE: What color do you want to share? Pick one.


UNIDENTIFIED FEMALE: OK. If you share the green one, you have to share it with Morjito (ph). You are going to share with Walker. Which one do you want?

FLOYD: What touches you when you see the progress of some of the young children especially in places like our early intervention classrooms. When you see children who haven't spoken be able to talk for the first time. Or you see children in our feeding program who have been dependent on a tube who have never been able to eat with their families. Make that sort of progress. That touches you very deeply. (BEGIN VIDEOTAPE)

ROTH: Done with school for the day, three-and-a-half-year-old Jacob Brandt jumps for joy into the arms of his mother Jacqui. Now he has more even lessons to learn.

JACQUELINE AIDENBRAUM-BRANDT, MOTHER: We take our shoe office and we wash our? We wash our hands.

ROTH: Jacob Brandt has autism. He was diagnosed over one-and-a- half years ago.

AIDENBAUM-BRANDT: He had a lot of inappropriate social behaviors, but I thought it was just his personality and that it was the lack of language that led him to behave in that negative way sometimes. My heart sunk. I was immensely, terribly sad. I cried nonstop.

ROTH: But Jacqui says she hasn't been cried over Jacob lately due to a combination of early intervention and constant therapy the little boy's condition improved dramatically. He attends school for children with special needs. He received weekly visits from four different therapists for speech, behavioral and physical development.

NANCY LANGER, PHYSICAL THERAPIST: He has made such progress. He couldn't speak. He would become so frustrated that he couldn't express himself.

ROTH: There is also a monthly gathering of Jacob's therapists to address his progress.

UNIDENTIFIED FEMALE: He'll take some thing. Overall, he'll definitely use language.

ROTH: And of course though Jacob is young to understand, he benefits from the sacrifices that parents sometimes have to make for their children's well-being. Jacqui is on leave from her job at the United Nations to devote entirely for her son. And her husband, Juan Carlos, a long time U.N. worker, has chosen to pass on perhaps better job opportunities outside New York. There appears to be no regrets.

JUAN CARLOS BRANDT, FATHER: We hope that other people will be awakened, other people will react, other people will come to us and will say, you know, I did not know that this was possible.

AIDENBAUM-BRANDT: This has helped me find my cause and I'm determined to spread the voice and remove the stigma on autism and be there for every parent.

ROTH: The Brandt's dedication to their cause and their relationship with the U.N. helped push the world body to make April 2nd World Autism Awareness Day and they say their work is all part of the bigger puzzle.

AIDENBAUM-BRANDT: Once you are the parent of a child with autism, you are the parent of all children with autism. And you suffer for all of them everywhere. I feel empowered, I feel strong and I want to share the little knowledge that I have and try to reach every family wherever they are in however way we can.


MCEDWARDS: There are so many different approaches to treating autistic children. Is there any one right way?

FLOYD: Well, there are ways that have proven to be more successful. What we are doing today has been proven to be successful over 20 years of practice and research.

UNIDENTIFIED FEMALE: You are making a beautiful mess.

FLOYD: There is probably no one right way, but there is an accepted approach that has been successful here and elsewhere. That's what we are applying here.



MCEDWARDS: 19-year-old Tito Mokapagia (ph) coming home from school, something that would have been unthinkable just a few years ago.

UNIDENTIFIED FEMALE: Everything is in order.

MCEDWARDS: Each arrival is a ritual. Tito sets the house in order. And only then can bear to sit. Once considered mentally retarded, Tito's autistic mind can be poetic and profound.


MCEDWARDS: He can barely speak, but he learned to type.

MUKHOPADHYAY: It was like a floating candle that kept itself invisible. That is what your day was like. OK. You hold that. I will take your pencil.

MCEDWARDS: His mother Soma gave up a career in chemistry to teach Tito to communicate. He was born in India and by the age of 3, it was clear something was wrong. Doctors there said Tito was beyond hope.

MUKHOPADHYAY: He would stare at the calendars. Then he would bring a book and start comparing the numbers. Then I knew he's making some sort of connection. And then I took the calendar and I told Tito, this is one, this is two. He touch one, he touch one. I would say this is one, this is two, this was three. This is when he was 3 1/2 years old.

MCEDWARDS: At the age of 10, Tito and his mother came to the United States brought here by an organization that heard about his amazing progress and wanted to study it. Eventually Soma was asked to teach others her technique. It can be painful to watch, but the miracle of Tito started with something as wrenching as this. Soma calls her method rapid prompting. Although it has not been tested scientifically, more and more parents are coming to this center in Austin hoping for a breakthrough.

MUKHOPADHYAY: I saw the crow, crow, crow, can you sing a song? What did the fox ask the crow to do? Sing or fly away? You tell me. Sing or fly away. What did the fox ask the crow to do? Sing. Yes.

I don't see the child as an autistic person. I don't see the label at all. I see the child as a person. Just as I would talk to any person I would talk to a child because the world is not going to talk to them in a way slowly. The world is going to talk in a fast way.

MCEDWARDS: The therapy does move quickly. At times it seems almost harsh. No good jobs or high-fives and smiles here. Soma is unapologetic about that. It works, she says. It's that simple.

Autistic children do things to self-stimulate, also called stimming. Unlike other therapies, Soma does not try to stop the stimming. Instead she says her relentless rapid prompting replaces the self-stimming and unlocks the mind even for a split second.


MCEDWARDS: 10-year-old Andrew Ray has been working with Soma for three years. Other behavioral therapies didn't work for Andrew. His family is planning to move across the country to Texas so he can have more time with Soma.

LYNNE RHEA, ANDREW'S MOM: Like I said, it enabled him to be able to go from barely being able to communicate his wants and needs to commenting on what's going on in politics.

MCEDWARDS: What are your hopes for Andrew?

RHEA: To have a meaningful, as independent as he can life, where he's happy, where he has, you know, a job and is a real part of the community because unfortunately, that's really not the case.

MCEDWARDS: She's right. It isn't the case, but at the HALO Center where Soma teaches, people believe a life with autism need not be a life of despair.


MCEDWARDS: Every autistic child in this room reveals a mind that ticks. Most are able to attend mainstream schools in. This extraordinary group session, Soma prompts them as they make jokes and tease each other about why they stim. One says he have been a pilot if he weren't autistic. Another a stockbroker. All of them have dreams.

A large percentage of autistic children will never speak, but Soma believes if she can teach them to spell and eventually type, the door is open for them in the same way it is for Tito. With the tireless teaching of his mother, Tito continues to write about what it's like to be autistic and the challenges he faces now.

UNIDENTIFIED FEMALE: How has your life changed now that you can communicate?

MCEDWARDS: Each response, agonizing but true. An autistic mind unlocks by the prompting and perseverance of a mother and son, teacher and student.

MUKHOPADHYAY: I can't say whether I am happy or not because happiness is a state of my mind. So sometimes I think I'm happy. Other times it is hollowness.

MCEDWARDS: Nineteen years to learn this much. Plenty more still ahead.



CLAIRE DEES, BLAKE'S MOTHER: Blake is going to be 20 in April. He was diagnosed with autism at the age of 2 1/2. Blake is what you would consider severely autistic. It's taken hundreds of trials here at the Marcus Institute for them to teach him simple daily living skills.

At 19, has just this year started learning how to communicate with photos, with pictures. To discriminate between two pictures was a huge hurdle for him. He understood if you gave someone a picture you received something, usually a piece of food.


DEES: I don't think I've ever given up hope.



PAULA HANCOCKS, CNN INTERNATIONAL CORRESPONDENT: Sarah Hewitt was diagnosed with asberger's syndrome 4 1/2 years ago at the age of 25.

SARAH HEWITT, ASPERGER'S SUFFERER: It's been really good meeting other people with A.S. and realizing that they are as normal as I think I am.

HANCOCKS: Sarah is a senior technical consultant at British Telecom supervising a team of 12. She deals directly with customers, but her condition which makes social interaction more difficult does not hold her back. British charity prospect has given her the confidence to find work and support from her employer.

HEWITT: I find it very difficult to explain to somebody what A.S. is and how it affects things because although I've known it's Asperger's 4 1/2 years, I've always had it so I've always been that way.

HANCOCKS: The London manager explains how many highly intelligent candidates fall at the first hurdle.

DAVID PERKINS, MANAGER, PROSPECTS LONDON: Hypothetical questions are very difficult for a lot of our clients so there are many interview questions phrase in terms of what would you do in the situation if? It's very difficult for them to put themselves in the position of a person that might be happening to.

HANCOCKS: While those with Asperger's may struggle with communication and understanding social nuances, they generally possess a higher level of systematic skills, meaning Sarah thrives at the technical aspect of her job. Prospects talk to some of Sarah's colleagues to explain the key differences of how those with Asperger's or autism perceive things differently.

PAUL ABBAS, BRITISH TELECOM COLLEAGUE: Some of the analogies are if you say somebody with Asperger's, pull your socks up. They will literally think pull your socks up. Knowing that literal understanding of things meant when you are talking to them or have a conversation with them, you take a little second to think about what it is you're saying.

HANCOCKS: Combined, Sarah has the support she needs, B.P. has the technical ability it needs. It has been hard work for Sarah to reach this level of acceptance.

HEWITT: I have a lot of problems with sort of wanting to be part of groups and never actually making it. And sort of immersed myself in music for most of the time. I had lots of behavioral problems from the age of about 12 onwards. So lots of psychologists and psychiatrists, they all came back to the same conclusion that it was just depression. I had lots of different tablets.

HANCOCKS: Sarah's mother thought she was autistic when she was 2. Her doctor disagreed. That's where Professor Simon Baron-Cohen comes in. He's been researching autism and is behind a widely used test for early diagnosis.

It's called C.H.A.T., or the chat list for autism in toddlers, based on object serving an 18-month-old child and asking the parents about their child's developments. The more updated key C.H.A.T.s narrowed the margin of error meaning at least 75% of cases are detected.

PROF. SIMON BARON-COHEN, AUTISM EXPERT: Socializing, chatting, mixing in the play ground. Things most children don't need to be taught. They are precisely the skills that children with autism find the hardest.

HANCOCKS: Baron-Cohen has also devised an educational DVD to teach children.

UNIDENTIFIED FEMALE: Sarah is happy to see Mark. See how she smiles broadly.

HANCOCKS: But he cautions against trying to medicate the disease.

BARON-COHEN: I think in the U.K. we have a slightly different view of the condition. We still want to help where need, but there is much more of a respect that this might be just a different pattern of development that in the same way and some people are developing as left handed rather than right handed.

HANCOCKS: A view which helped Sarah enormously.

HEWITT: Everything all comes together and started working. Which I never thought would happen. My parents didn't. I love my job and I'm married now. Just feel stable.



DIANA MAGNAY, GERMANY: 9-year-old Jonas has a new dream. I want to be a cameraman. Like many children with the form of autism called Asperger's syndrome, Jonas masters his new skills fast and has a tremendous eye for detail. Both of these boys usually find mixing with other children extremely stressful. But not here.

For many of the children here this week, this is the first time they've been able to pursue their own interest and play with other children without ever being made to feel that they're different.

This is a week-long camp in the heart of Germany especially designed for children with attention deficit disorder or like Jonas, Asperger's syndrome.

The camera is a good example, says Jonas' mother. He'll now go back to school and always in the back of his mind he'll know in situations where he's not so capable that he can use a camera. He can do things, too.

Not content with just being behind the camera, Jonas decides to set up an interview. In the hot seat, film maker and author Axel Brauns who has come to speak at the camp. Brauns was so severely autistic as a child, he couldn't talk.

The good thing about this environment, he says, is that these young autistic people realize they don't have to hide themselves. They are normal in the autistic sphere. My story is like hundreds of stories, even if other autistic people can't express theirs as well as I can.

Brauns explains to me the cover of his book. As an autistic 18- year-old, he says, he felt like a parent in a winter landscape. He was the exotic warm-hearted living character in a multitude of cold, unloving people who couldn't understand.

In a supportive environment, these children begin to come out of their shells. Parents learn often much to their surprise how much they can do in the home environment to help their children cope. Parents hope this new-found confidence will roll over into life beyond the camp. And help their children fulfill their dreams.



FRAN YOGEV, JESSICA'S MOTHER: Jess loves music. She loves to dance. She loves to sing. She doesn't like to be confined in doing things within lines. She's a neat kid. I mean, she's very loving. She's very giving. We're the center of her universe. She's kind. She doesn't know about hate. She still thinks the flowers dance and the birds, you know, talk and everything's a Mickey video. And that's her. That's her life.

UNIDENTIFIED FEMALE: Are you ready to count?


UNIDENTIFIED FEMALE: Yes, we're are going to count.


UNIDENTIFIED FEMALE: Good job. You've got it.

MCEDWARDS: You mentioned she's here until she can't be here anymore. I mean, that time will come. What's next? I mean, what do you do with her next?

YOGEV: You're asking me something that's going to happen and I don't even know what's going to happen to her next week. What's going to happen to her when she's 22? I don't know. I have nothing for retirement. I will probably still be working. I have no choice. Just mainly for the insurance.

MCEDWARDS: How hard it is to fight the insurance companies? How hard is it to get the coverage that you need for her medical care?

YOGEV: Oh, it's almost next to impossible.




UNIDENTIFIED FEMALE: Yes, you're seven.

DREW GRIFFIN, CNN CORRESPONDENT, (voice-over): For Ryan Unumb, learning his age is part of a daily routine of intensive behavioral therapy. Since his diagnosis five years ago, Ryan's parents, Lori and Dan, know his treatment has worked wonders.

LORRI UNUMB, MOTHER OF AUTISTIC CHILD: And then you realize how incredibly expensive it is. And if you're like Dan and me, you think, at least we have insurance. Thank goodness. And then insurance doesn't pay for it.

GRIFFIN: Like most parents with autistic children, they found out the hard way, medical insurance generally doesn't cover autism treatment. And it's expensive. For the 40 hours a week Ryan gets, the bills are $70,000 to $80,000 a year. That's Lorri's entire salary.

L. UNUMB: It's cost that much and yet I consider us the lucky ones because we have good educations and good jobs and so we can sacrifice that much money for his therapy. The people that just break my heart are the ones who can't.

GRIFFIN: As a lawyer and a law professor, Lorri decided to do something about it to force insurance companies to cover autism. She wrote a bill, lobbied hard and this summer, Ryan's Bill will become Ryan's Law in South Carolina.

L. UNUMB: It will provide up to $50,000 per year for behavioral therapy through the age of 16. And it prohibits discrimination in insurance matters just because of the diagnosis of autism.

GRIFFIN: How she did it, how she and other parents went up against one of the most powerful industries in the nation and won has become legend among parents of autistic children who flock to seminars to learn from the trailblazers how they could do the same in their own states. The health insurance industry warns that making coverage mandatory is ultimately a bad thing for the public.

SUSAN PISANO, AMERICA'S HEALTH INSURANCE PLANS: We oppose the idea of mandates in general because we think, in the end, what happens is that health care is less affordable and less accessible when mandates are imposed.

GRIFFIN: But we wanted to know, why isn't autism treatment covered in the first place?

PISANO: Many of the services that are now being billed or being asked of the health care system are traditionally educational services. And the American Academy of Pediatrics, for example, lists a number of services as educational and lists other services as medical.

GRIFFIN: In some ways it's a public policy question. Either way, the Unumbs have fallen through the cracks. Surprisingly, the family behind Ryan's Law won't actually benefit from it.

DAN UNUMB, FATHER OF AUTISTIC CHILD: Not by this legislation.

L. UNUMB: No. And we knew that. We knew that going through it.

GRIFFIN: Dan's company is self-insured. The state law does not apply. They hope one day they will get coverage. But for right now, one day at a time, one small gain at a time.

UNIDENTIFIED MALE: So how old are you?

L. UNUMB: How old?

UNIDENTIFIED MALE: Can you tell me?

R. UNUMB: Seven.

L. UNUMB: Seven. Good job.


MCEDWARDS: How much do we really know about autism?

DR. CATHY TRAPANI, EARLY INTERVENTION PROGRAM: We know that children can be identified as early as 18 months. We know that early intervention makes a huge difference. We know that children have many talents, despite the fact that they have the diagnosis.

We know the kinds of intervention that they need. We know that they need to have small group ratio. We know that we need to have highly trained teachers. We know that we need to train social skills and language and address problem behaviors immediately.


WILF DINNICK, CNN CORRESPONDENT, (voice-over): Fourteen-year-old Jad has entered a whole new world. A journey that began in the United States. His mother heard about an extraordinary school in the Middle East for autistic children. She was willing to turn her family's life upside down in order to help her autistic son.

RIMA BOU CHAKRA, MOTHER: And for my daughter, for my husband to move, another job, another country, another house, it's all changes, yes.

DINNICK: But she insists it's been worth it. And they've ended up in the Arabian gulf country of Qatar.

CHAKRA: And here, within like a one and a half years, I saw him improving better. So I was happy to see all this improvement. I decide to stay, you know?

DINNICK: The Shafallah Center is a state-of-the-art school for children with special needs. A leader in helping children with autism. It is in Doha, Qatar's capital, and welcoming students from six years old to 21. Shafallah is the name of a local desert flower. And the goal here is to help these students blossom.

It is the creation of Sheikha Moza, the progressive first lady of Qatar. The money, from the oil and gas rich government. The result? The school has some of the world's best teachers and facilities. Like the sensory room, where autistic children get the chance to connect to a sight, a sound or a touch. When they can find something pleasing, the children can react positively, a chance for real communication.

AHMED AFNA, THERAPIST: So with autism they have problems with emotion and interacting with each other or communicating. And this is one of the way of communicating with us that they are smiling. This way we know they are happy.

DINNICK: The same reason, they say, art is the voice of autism, allowing them to speak with something other than a word, like an instrument or with colors.

The people on this campus are not satisfied with just learning the best ways to treat autism. They now want to unravel this genetic mystery. And so they're about to break ground on this massive space behind me on a state-of-the-art research and development center.

The Shafallah Center has started a major study of autism in this small gulf country. Qatar is thought to have a good gene pool to exam. The local population rarely marries outsiders and local doctors had not diagnosed autism until recently. A place to start a study on autism from scratch.

DR. HATEM EL-SHANTI, SHATALLAH GENETICS: There are certain things that we understand now that we did not understand 10 years ago. And there are still, you know, a long list of questions to be answered.

DINNICK: Qatar has joined 19 other countries, all sharing their information about autism. Seen as the next and perhaps most important step to solving mysteries and easing the pain for the loved ones.

CHAKRA: If you just say hi or wave his hand, it's like, for me, it's like reaching the moon.



ROBYN CURNOW, CNN CORRESPONDENT, (voice-over): This Johannesburg school is called The Key because you never know what will unlock these children's potential, say the teachers. All the students are autistic. This is a play ground of kids who live in their own world, trapped in themselves by a condition that affects the development and functioning of the brain. Take Momo. A solitary five-year-old who prefers playing with sand than with other children.


CURNOW: Reinette and the other teachers here say they are showing these autistic children how to break out of their shells. Each has varying degrees of autism. Each needs specialized care. Each marches to the tune of a different drummer.

This place is not only a safe haven for the children, but a rare sanctuary for the parents. Momo's mother, Tumi, says bringing up an autistic child is a challenge.

TUMI MASHIGA, MOTHER: And the tantrums that she threw, you couldn't really take out in public. A lot of the time it was hell because you get people staring and also the funny comments.

CURNOW: Autism is still misunderstood, stigma, she says, and there's little support for parents of autistic children here in South Africa.

JENNY GOUS, PRINCIPAL, THE KEY SCHOOL: There's very little available for people with autism, whether they're children or adults. The seven, eight, nine schools that are dealing with these children and they're touching the lives of less probably than 1,000 children.

CURNOW: Momo's only been coming to this school for a year, but already her teachers and family have noticed a difference in her behavior. They say she's a little more receptive to other people. A little more present in this world.

But, still, she and her classmates will always need special care.

PALMER: In this world, but they're not from this world, and it's our part to bring them back to our world to how things (INAUDIBLE).

CURNOW: To cope and to love the people who matter in their lives.



JOHN VAUSE, CNN CORRESPONDENT, (voice-over): At first, Ujing (ph) didn't know why her son, Ruoqi, never played with other kids, why he never spoke.

UJING, (through translator): When he was around two-years-old, I noticed a lot of strange behavior. I took him to a doctor in Shanghai. He diagnosed language dysfunction.

VAUSE: But Ruoqi's behavior got worse.

UJING: I took him to many hospitals to try and find out the real problem. Finally, one hospital said my son has autism.

VAUSE: And when she heard that word, autism, she felt so hopeless she began thinking the unthinkable.

UJING: I thought about committing suicide with my son. I could not imagine the pain he would suffer when he grew up. All the unfair treatment from society and school mates. As a mother, I felt so much pain.

VAUSE: Tian Huiping, or Hope as she's known, also struggled with the same desperate emotions. Eighteen years ago, when she, too, was told her son had autism. Back then, doctors said there was no treatment, no hope. But at one hospital, by pure chance, she found a small brochure printed in Taiwan on how to teach autistic kids. It wasn't much, but she read it over and over again.

TIAN HUIPING "HOPE", FOUNDER, STARS AND RAIN INSTITUTE: So I just tried to work a little bit with my son and another boy. We lived together with another boy. And it worked. It worked a little bit but I (INAUDIBLE). VAUSE: And from that brochure grew this, the Stars and Rain Education Institute for Autism. Born of one woman's utter determination to help her son when no one else would.

HUIPING: If he cannot go to school, what will happen with him? As a mother, this is such a big worry. And now 15 years passed now. Yes. And all these parents, they have the exact same worry like I had 15 years ago.

VAUSE: More than 4,000 families have received the kind of help here they couldn't get elsewhere in China, including Ujing. She's learning how to communicate with her son, how to raise him, even how to love him.

UJING: The training here strengthens the acceptance of your kids. Honestly speaking, as an ordinary person, I get angry and even shout at him. But here, they say we have to accept our kids as who they are. I feel that I have changed.

VAUSE: The Chinese government says there's only about 100,000 people with autism in the entire country. But unofficial estimates put the number at somewhere between 1 million and 2 million, perhaps more. And there's just a few doctors who are capable of diagnosing the disorder.

The institute here lists 60 nationwide and that's an improvement.

Fifteen years ago, how many doctors were there in China that would treat autism?

HUIPING: There was -- (INAUDIBLE) at school at that time, in 1993, there was only three doctors in the whole China who can issue diagnosis.

VAUSE: Getting into Stars and Rain can take more than a year. With such high demand, the focus is on teaching the parents how to teach their kids.

Can the government do more? Can they test (ph) and do more on treatment? Can they have more doctors?

HUIPING: I am not used to request anything from government.


HUIPING: We are educated. We are grown-ups in such a situation.

UNIDENTIFIED FEMALE: So instead of focusing on saying, no, you can't do that, you introduce the positive saying, here's what you should do.

VAUSE: For three years, Stars and Rain has been working with Heartspring, a Kansas-based center for children with special needs, sending teachers here like Connie Coulter. She found the school struggling with almost no resources, without the latest research. But what the school did have surprised her. CONNIE COULTER, HEARTSPRING: There are things that they've taught me about value of family and the passion, the empathy, the sacrifice that I don't see as much in the United States.

VAUSE: It's a sacrifice these parents have to make because, in China, if your child has autism and you are looking for help, there is almost nowhere else to turn.



MCEDWARDS: Is there any doubt in your mind that there's hope for these kids?

FLOYD: Often when parents get that diagnosis, they feel crushed. They think that there is not much of a future for this child. What we do is try to provide that hope because often these children have tremendous abilities. But we have to find them and help them tap that.

And sometimes there are children that don't speak, but once they do speak, they have a tremendous amount to say. And there are children who don't make eye contact, but once they learn how to, they can make friends. So there is tremendous hope. There is tremendous potential. But it does require patience and investment and work.


CONOR BOULDEN, SON: (INAUDIBLE). I mean did enjoy it because it's because it's not like something asked (ph), like you have to actually work your brain a lot to get around it and answer. You know, it's good to be drawing and painting.

JIM BOULDEN, FATHER AND CNN CORRESPONDENT: When you have autism, it's usually sort of jumbled in with lots of other things. And so Conor is on the autistic spectrum, so it's autistic spectrum disorder, ASD.

C. BOULDEN: You feel so basically have trouble with your communicating skills and social skills and you can get stressed sometimes. You can find some situations difficult.

J. BOULDEN: I'm sure parents who have children who are autistic understand this and would agree with me, when you get that diagnosis, it's a relief. You don't say to yourself, oh, no, my kid's autistic. Look, he's been diagnosed. You almost celebrate the -- I hate to say it, but the label.

You get that diagnosis because everything changes. Schools change. The counsel changes. The people who can help you change. Doors get opened. And not easily, but doors get opened that you didn't have before. And so once you get that label on the child, it's a relief.

I think one of the things we're working on very much is a very consistent environment at home still and the very calm environment. And that's really key no matter how bad a day Conor might have or how bad things might go for him if he's gone out and come back is to try to keep things very, very calm.

C. BOULDEN: I've never really been able to get over the fact that I can't just walk around. And if someone bumped into me, I get really annoyed and stressed out. And it's just -- it's really annoying to have that.

J. BOULDEN: You have to fight for what you see and you have to fight for what you think you need. We went out and found as many people as we could who could help us through the government, through private, through a doctor. But having said that, if we couldn't have paid for some of this ourselves, I'm not sure we would have the success and the wonderful young man that we have today. And that's a worry for other people.

My wife worked really hard on finding a special school for Conor. And it's a miracle worker. I mean one of the things we needed to do was get him to a school where the staff could understand boys with ASD. Many of them are high-functioning autistic. And it's worked out really well. So it was a combination -- it was really a combination of diagnosis, the right medication.

C. BOULDEN: Conor Boulden, 14 news, London, 57 past 8:00.

J. BOULDEN: I think for me, personally, the reward is Conor himself because here's a child who, for no fault of his own, obviously, got stuck in all these terrible situations. And a lot of well-meaning adults just didn't handle it, I don't think, well. And then he came to a situation with my wife, who's tough as nails, and she just would not take no for an answer with any of the authorities. And I think the joy of it all is, is that Conor is coming out of all of this.

C. BOULDEN: You have to look at yourself. And if you know yourself well enough, the change, the bad things that you have, then -- and if you change that, then you can be quite a successful person. But now I don't think anything is going to hold me back from being a successful person.



METTE DEAR, JONAS'S MOTHER: I usually get the kids up around 6:00. Just to not get them up too early because otherwise it's going to be a really long day for them.


M. DEAR: If he's excited, he's stems (ph) like all the time.

I get him dressed. They get their breakfast, brush their teeth, make their lunches and then pretty much get him ready for the car ride. And then we always sit about an hour and a half. Thank you. Bye-bye. Good job.

JOHN DEAR, FATHER AND CNN PRODUCER: We're really happy about what he gets there at Emory because two-thirds of the students there are typical and the other third are autistic. He feeds off his peers. And right now he's learning from kids his own age that are talking and role playing. And, you know, that's what he's bringing home. And that's what we're seeing is a more and more Jonas coming out.

UNIDENTIFIED FEMALE: Basically I just wanted to talk to you guys first to go over the home teaching goal schedule.


J. DEAR: We've seen so much improvement in Jonas. And, basically, when we brought him there, he wasn't speaking. He wasn't . . .

M. DEAR: He didn't respond to his name. He wouldn't look at us.

J. DEAR: No. I mean, he was in his own world. We spend $800 plus a month in gas, four plus hours a day on the road, 175 miles a day on our car.

M. DEAR: What are you having a fit about? What are you doing (INAUDIBLE)? Come on.

J. DEAR: What about this one? What color is this one? What color is that?


J. DEAR: Yellow. Good job saying yellow.

It took us five months from the point that we started suspecting something to actually get a diagnosis. And it was something that we knew in the back of our minds might be possible. But when it came it was just like a brick hitting us in the head. And we felt horrible. We felt like it was our fault. That, you know, we should have done something sooner.

Rasmas (ph) is doing the same things that Jonas is doing. And, you know, we're petrified.

M. DEAR: What are we going to do if, you know, if two of our kids are autistic? How are we going to make it all work?

Is that cranky? That's cranky's a crane, isn't he.

Good job saying flower.

J. DEAR: We just hope that, you know, we're going to give him that opportunity to fulfill his dream and maybe even ours.

Brush the teeth way in the back. Give me a hug. This isn't going to go away. This problem is here and it's happening now and it's happening to families just like us. We had a typically developing child up until a point and then we started losing him and now we're getting him back and that's one thing we don't want to do, is we don't want to lose him again.


MCEDWARDS: I'm Colleen McEdwards. Thanks for watching "We Have Autism."

UNIDENTIFIED MALE: To learn more about autism, go to Or check out any of these Web sites. Have thoughts about autism you would like to share, we welcome them at