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Autism Now: Dr. Sally Rogers Extended Interview

April 19, 2011 at 12:00 AM EDT

ROBERT MACNEIL: What do you do at the Mind Institute for the children who come here, you yourself, what do you do?

DR. SALLY ROGERS: I conduct a program of research involving early diagnosis of children and very early treatment. So right now we’re focused on trying to identify signs of autism in infants and toddlers and beginning interventions right away to see how effective they can be. And one of the things that we have been learning through our work in early intervention is that the younger children are, the more quickly they seem to respond, the more language they develop, and the more quickly that learning impact has. Something about the plasticity of a baby brain, you know, which — we all envy.

ROBERT MACNEIL: So, is that arresting the onset of symptoms of autism?

DR. SALLY ROGERS: Well, in the children I’m talking about, they already have the symptoms of autism. We are reversing some of them. And primarily I think we are changing the drastic effects that autism has on development. Autism can pretty much shut down language development and social development and play development in a young child.

Information that my colleague, Sally Ozonoff, gathers from studies of babies from one to three shows that children who are developing autism may make almost no developmental progress in that period. And that puts a lid on later ability to learn, to grow, to be productive. We’re trying to take that lid off of development, that lid that autism puts on language growth.

ROBERT MACNEIL:  Because if a child doesn’t use that period from one years to three years the way a typical child does, it’s very hard to replace it?

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DR. SALLY ROGERS: It’s much harder to learn language after the age of four or five. I don’t know if you’ve ever struggled to learn another language. I certainly have. And my skills are terrible. And I envy when I go to another country, I envy the three year olds who can speak so much better than I can no matter how hard I try. So there is something particularly sensitive to language in early childhood. And we never have that again. We’re trying to capitalize on that period of sensitivity.

And we really are trying to rehabilitate social interest, linguistic capability, and learning acceleration in very young children with autism. We’re trying to put a brake on what autism does and take that lid off and let children develop, help children to develop and get back on a much more normal developmental curve as quickly as possible.

ROBERT MACNEIL: This particular program we’re doing is primarily on prevalence, the prevalence of autism and what the numbers mean and what direction they’re taking. What is your take on that?

DR. SALLY ROGERS: You know, I’ve been doing autism research for 30 years. And the number of children that I see now with autism is scary to me. And as a clinician, it’s an incredible increase in the number of affected children. And it’s hard to imagine how we are going to be able to provide the services these children need so that they can be productive members of society, so that they can learn and flourish. We have to do that because otherwise the cost of people who cannot work and cannot live independently, it’s a huge cost to them, to their life quality, to their families, and to society.

ROBERT MACNEIL:  From your perspective, it seems the incidence, the prevalence seems to be growing still.

DR. SALLY ROGERS: From my experience, it seems to have grown. I don’t know from now, from last year to next year whether that’s continuing. But I’ve been working with two year olds with autism for 30 years. And the number of children we see every week in that age group is phenomenally larger than what we saw. I remember the first two year old with autism I ever saw in 1981. I saw one. And then two years later I saw another. And then two years later I saw another. Now I see them, many every day.

ROBERT MACNEIL: We were in the Elk Grove School District today which is part of the same county, Sacramento County, and the administrator for special education said that every year they get a number of requests to teach children with autism and that in the last four years it has virtually doubled. Last December they had requests within that school district for 750. And four years ago it was in the vicinity of 400. Are you seeing that kind of increase in demand?

DR. SALLY ROGERS: There’re probably several factors that go into that. One of the factors has to do with the change in California from schooling children with autism in separate schools to schooling them in public schools. People are moving children more into the public domain. And that accounts for some increase. But we are also much better at diagnosing autism. Every year we develop new tools and we understand autism particularly at the borders, the children who have the mildest cases, the children who have the most severe cases, children who might’ve been diagnosed differently a few years ago. We’re better at those diagnoses.

So more children who had autism before but were missed in terms of diagnosis are getting diagnosed. So I think those are two of the factors that are going on. But many of us believe that there is a real increase in prevalence as well, and that that’s affecting schools and the public.

ROBERT MACNEIL: This very impressive facility, the MIND Institute, does it have the capacity for the growing demands that you describe? Or are you bursting in terms of staff and physical facility?

DR. SALLY ROGERS: Terms of staff, every agency that I know that focuses on autism, evaluation of treatment, has waiting lists. Now, we’re working really hard to keep our waiting lists small. And they are pretty small right now. But it’s a never-ending problem of resources, trained people, and meeting community need. The more programs you develop the more people come to receive them. And it seems like kind of an unending balancing of resources and need.

ROBERT MACNEIL: How do people who bring their children with autism here pay for the services that you provide?

DR. SALLY ROGERS: We’re fortunate in our state to have more public resources to help families with autism than many states do. And so many children who come here for evaluation are being covered by their insurance companies. Children who come here for treatment are being covered by regional center services and not very often their insurance companies. It’s really different from state to state.

I was just in a meeting in Washington yesterday. And I presented some data from a study we’re doing of toddlers with autism across several states. We found that these are one-year-olds in California who are receiving two to three times as many hours a week of service than children in Michigan or children in Seattle. And this is just because of the funding patterns of the states and state priorities.

There’s huge inequity right now across the country and even across the state about services for children with autism. That’s very disturbing because we know that the effects of good services and early intervention are huge. We used to think that half children with autism would never speak. The current data from the best intervention studies show that 90 to 95 percent of those children are speaking by the age of three.

That’s an incredible life difference on children. We’re finding we can increase learning rates — by 10 or 20 I.Q. points in a year. Those are phenomenal outcomes. And many people can create them. But it requires hours of intensive and carefully delivered intervention. And in some states you can get that by asking for it. And in other states, you can’t even get it if you can pay for it yourself.

ROBERT MACNEIL: Do you take people from other states than California at this Mind Institute?

DR. SALLY ROGERS: We do. And we actually have a project directed by my colleague, Laurie Vismara, which is using the internet to serve families in rural areas and under-served areas all over the country in both English and Spanish. So we’re trying to– use the best that we have of distance technology to help parents receive services and also to train teachers and other interventionists in the best techniques.

I’m in a project with Sam Odom at the University of North Carolina at Chapel Hill where we’re doing exactly that, developing Internet-based materials for teachers and early interventionists so they can access the most up-to-date information and increase the power of their education and intervention to get these kinds of effects for children in the public school domain.