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Autism Now: Exploring the ‘Phenomenal’ Increase in U.S. Prevalence

April 19, 2011 at 5:25 PM EST
In the second report in his Autism Now series, Robert MacNeil investigates why the number of children with autism is increasing in the U.S. He meets children at different points on the autism spectrum and gets several views on the increase in prevalence -- from better diagnosis to a variety of environmental factors.
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TRANSCRIPT

ROBERT MACNEIL:  Autism now affects more American children than childhood cancer, diabetes and AIDS combined. In the last decade, the numbers of children diagnosed on the autism spectrum have risen rapidly. The Centers for Disease Control now puts the rate at one in 110. Tonight, we look at what these rising numbers mean.

This is the face of autism.

PERRIN RAPP: I’m Perrin. I’m 9 years old.

ROBERT MACNEIL: But so is this.

Would you tell me your name? Would you tell me your name? I think your name is Juliana, and I think you’re 8. Is that right? Is that right, Julie?

And so is this.

LOGIN HENDERSON: My name is Login Henderson, and I’m 8 years old.

ROBERT MACNEIL: Each so different, yet it’s all called autism.

You can see the differences more dramatically when you visit their schools. They learn differently.

Juliana Hernandez doesn’t talk. Although her teacher’s says she is very smart, she’s in a special-needs class, and at 8, she’s still learning to count the days of the month.

Login Henderson attends second grade at another elementary school. He’s in a mainstream class but needs an aide to manage any kind of change, although her support is almost invisible in class. But in the playground as Login plays alone, his social disability is more obvious.

Like Login, Perrin Rapp can talk, but he’s profoundly different in other ways. Perrin attends what is called a communication-handicap program for children who need to go at a slower pace, although he’s learning at grade level in other areas.

PERRIN RAPP: Can I read quietly?

TEACHER: Do you need a break? Are you asking me for a break? Do you want to read this story quietly? Is that what you’re asking me?

PERRIN RAPP: Mm-hmm.

TEACHER: OK, two minutes, and then you have to come back to…

PERRIN RAPP: Wait, wait, I want to …

SALLY ROGERS, MIND Institute: Hi, feet. You like that, huh? OK. I’ll rub your feet.

ROBERT MACNEIL: Sally Rogers is a professor of psychiatry and behavioral sciences at the MIND Institute in Sacramento. MIND stands for Medical Investigation for Neurodevelopmental Disorders. It was established with state funds at the University of California, Davis in 1998. Sally spent some time playing with Juliana, Login and Perrin, who are among the thousands of children with autism who’ve been evaluated at the MIND Institute.

LOGIN HENDERSON: No. I do not autism.

SALLY ROGERS: No. You don’t want to talk about autism?

LOGIN HENDERSON: No.

SALLY ROGERS: OK. No autism. I got that. Would you rather have some Play-Doh?

LOGIN HENDERSON: No.

SALLY ROGERS: Or some bubbles or something?

LOGIN HENDERSON: No. Nothing.

SALLY ROGERS: No. Nothing. You don’t want anything today. OK. I know how that feels.

They all have common threads. None of those three children interact with me as a typical 8-year-old would. None of them converse with me as a typical 8-year-old would. And none of them really use the materials and the situation in the room like a typical 8-year-old would. But each of them showed their symptoms in a very different profile.

Do you know Shrek’s girlfriend’s name, Perrin?

PERRIN RAPP: (INAUDIBLE)

SALLY ROGERS: What is it?

PERRIN RAPP: (INAUDIBLE)

SALLY ROGERS: Venera?

PERRIN RAPP: Mm-hhm.

SALLY ROGERS: Oh, boy I didn’t know that.

Each of them wanted a different relationship with me. Login didn’t want any interaction with me. Perrin wanted a lot of interaction with me. And Julie wanted access to the materials and was happy to interact with me but doesn’t have a good way of starting or maintaining interaction because she doesn’t have language to use. But we used nonverbal communication.

ROBERT MACNEIL: Like?

SALLY ROGERS: Well, she followed my cues, my gestures. We figured out what each other wanted. We don’t need language for that.

ROBERT MACNEIL: Describe how differently you see each of those three children. Where do they – where do you put them on the spectrum?

SALLY ROGERS:  Well, autism has affected Julie particularly severely in her language and communication skills. She showed that she had some awareness of print. You know, when I was writing her name and she was copying it, I said some letters, and she could write them. So, it’s clear that she knows more than she can share through words.

Perrin certainly has lots of skills. He can write. He could write names. He could figure out how to spell my name. He creates symbolic materials. He can carry on a conversation. But it’s kind of a one-sided conversation, you know?

ROBERT MACNEIL: And Login?

SALLY ROGERS: And Login, Login was so uncomfortable in the whole situation. And fortunately Login has language and knows how to use language to express his feelings. He didn’t have to have a tantrum or be destructive or aggressive. He could communicate with his speech, which is a great gift to be able to share your feelings. 

LOGIN HENDERSON: All I would like is alone time, and I would like to get out of here.

SALLY ROGERS: You’d like some alone time? OK, you got it.

ROBERT MACNEIL: Login has two older brothers, Jason, 10, and Matthew, 12. And, remarkably, they both have autism, too. In fact, although they share the same genetic inheritance, in their diversity, the three Henderson brothers almost represent the breadth of the autism spectrum. Each boy’s symptoms are quite different, as their dad, Rick Henderson, describes.

RICK HENDERSON: You know, Matthew, for an example, my 12-year-old is extremely shy, very passive in terms meeting people and being in different environments.

ROBERT MACNEIL: Matthew is high-functioning on the…   

RICK HENDERSON: He is high-functioning on the spectrum. He is our highest-functioning child. And does very well. He is mainstreamed in school.

ROBERT MACNEIL: Good verbal skills?   

RICK HENDERSON: Very good verbal skills. My 10-year-old, Jason, who is what they would call mid-moderate to severe in the spectrum. Very limited verbal communication, but at the same time very social.

JASON HENDERSON: What is your name?

CAMERAMAN: Hi, my name’s Jason.

JASON HENDERSON: What’s your name?

CAMERAMAN: Jason. We have the same name.

RICK HENDERSON: His name’s Jason. He’s Jason, and you’re Jason.

JASON HENDERSON: What’s your name?

CAMERAMAN: I’m Robert.

RICK HENDERSON: Jason especially has been a real challenge, where his mind will wake up at 3 in the morning, and he thinks it’s the middle of the day. And he’s up playing and doing his laughing and giggling and turning on TVs and, you know, just really thinking it’s the middle of the day. And you can’t shut that off. And so we’re up all night with him, ensuring to keep him safe and trying to prevent him from waking up the other two. And that happens at least once a week. 

And then my youngest son, Login, he’s what we call our politely defiant one. He is considered to be high-functioning but not quite as high as where Matthew is.

I see it as progress. I really see it as an achievement to be able to identify these kids who previously were either misdiagnosed or maybe had no diagnosis at all.Richard Grinker, George Washington University

ROBERT MACNEIL: How can the Henderson brothers and the other children all be so different yet diagnosed with the same condition? The answer to that question is where scientists disagree about what the rising numbers of autism diagnosis mean. Anthropologist Richard Grinker, a professor at George Washington University, says it’s because we have widened the definition of autism.

RICHARD GRINKER, George Washington University: It’s where somebody who previously had the identical symptoms now is conceptualized differently. And so, if you went back 30, 40 years, and you looked at people who were diagnosed with mental retardation or who were diagnosed with what was then called childhood schizophrenia, you would find that those people, 30 years ago, would qualify for the diagnosis of autism today. And I suspect that we may see the prevalence of autism continue to increase, not because there are more cases. They were there all along, perhaps, but because we’re getting better at locating them, finding them and delivering services to these children and adults who really need help.

ROBERT MACNEIL: But a majority of the researchers we talked to believe that wider diagnosis explains only part of the increase in autism numbers. The rest remains the object of much scientific speculation. Among others, Dr. Irva Hertz-Picciotto, who heads the Division of Environmental and Occupational Health at UC-Davis, sees many possible environmental factors.

IRVA HERTZ-PICCIOTTO, University of California, Davis: There is a group that did look at the diagnostic substitution explanation. They thought that maybe explained a quarter to a third. But in addition to that, there has probably been an environmental contribution for a long time.  We, in fact, know that some of the potential environmental causes do include, for example, infectious agents.

ROBERT MACNEIL: Do you have candidate factors for those factors that may be fresh in the environment?

IRVA HERTZ-PICCOTTO: I have a lot of candidate factors, actually. And they include nutritional factors, infectious agents, chemicals in our environment, including chemicals in the household products that we use every day. There are a variety of factors that could be influencing development, and they may play a role at different points in development. But I think multiple factors contribute not just across the population but within any one individual. So when I say that I think autism is multifactorial in its causation, I think that applies to even at the individual level so that it might take two or three susceptibility genes combined with two or three environmental factors at critical junctures.

ROBERT MACNEIL: Which might explain why individuals with autism are so different, even though they share some obvious symptoms.

IRVA HERTZ -PICCOTTO: Exactly. Exactly.

RICHARD GRINKER: And I say, “OK, there’s this big prevalence increase in autism. That’s undeniable. There’s a prevalence increase.” Whether it means that there’s an increase in the real number of people with autism or not, there’s a prevalence increase. But I see it as progress. I really see it as an achievement to be able to identify these kids who previously were either misdiagnosed or maybe had no diagnosis at all.

ROBERT MACNEIL: Sally Rogers has first-hand experience of the rising numbers as she works to identify and treat children with autism at the earliest possible age.

SALLY ROGERS: In my experience, the number of children who have autism has increased enormously. I remember 30 years ago when I started working with young children with autism in a real focused way. And I remember when I saw the first child in 1982, a 2-year-old with autism.  Two years later I saw another. Three years later I saw another. And now in the last two years, we’ve recruited 50, 70 2-year-olds with autism just here in this city. It’s a phenomenal change from a clinician’s experience in the prevalence of autism.

ROBERT MACNEIL: Whatever is happening to the numbers, there is a saying among those who know autism well: “When you’ve seen one child with autism, you’ve seen one child with autism.”

The prevalence of autism is intimately linked to what causes autism, and that’s our subject tomorrow night: the causes of autism.

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