Autism Now: Dr. Richard Grinker Extended Interview
[Sorry, the video for this story has expired, but you can still read the transcript below. ]
ROBERT MACNEIL: Richard, is, in your view, the prevalence of autism still rising?
DR. RICHARD GRINKER: Well, the answer to the question of whether the prevalence of autism is still rising is still open. There’s a lot more data being gathered. And it’s really a very pressing issue. The question of whether the prevalence of autism is rising depends in large part on how you define autism and how you define prevalence. If you have more of a disorder, it could mean that it’s being better-identified. It could mean that it’s being recognized and people are getting treated.
ROBERT MACNEIL: And tell us how the cases that are quoted, for instance, by the Centers for Disease Control, the prevalence of one in 110, how is that determined?
DR. RICHARD GRINKER: The Centers for Disease Control does very careful and thorough analyses of records and registries, looking for as many cases as they can find. They’re not looking at actual human beings in person at like a patient who goes to a clinic and is seen by a doctor. They’re combing through records. And so the prevalence rate that they are ascertaining is based on what they can find.
And what we do know about the records that they’re using is that those records are different from the records five years ago or ten years ago. Before all of the autism awareness in the last 10 to 20 years, the records didn’t contain the words that would sort of call out to you, autism. People weren’t writing as much about social impairments. They weren’t using phrases like joint attention or executive functioning or autism spectrum or seems to be on the spectrum. So the more services are available, the more the vocabulary is accepted within the special education community, the easier it is to find them.
So yes, the prevalence is increasing. But what that means, to a large extent, is that more people are being identified. Not that these people weren’t there before and called something or not identifiable. 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: So people who were alarmed and say, “Why don’t you call it an epidemic, because it looks like an epidemic?” What would your answer be to that?
DR. RICHARD GRINKER: Well, I can answer that in two ways, as an anthropologist, and scientist who works on autism epidemiology and as a parent. And I’ll tell you first, as somebody who does work on medicine and illness, when you see the prevalence of a disorder rising, you shouldn’t first assume that that means that there’s more of the disease. And we’ve seen that in cancers, in diseases like Alzheimer’s disorder, in hypertension, diabetes, eating disorders. The more that we see these things diagnosed could mean that it’s progress. That we’re actually starting to see these things and to treat people. And then if I can answer that question as a parent — as a parent, I never felt a panic as if there was some major epidemic of autism.
When I started to learn about autism, I felt like I was being given a framework, that child psychologists and psychiatrists were helping me to understand my child in a way that she would not have been understood in the past. And so I remember the day that my daughter got a first diagnosis from a psychiatrist at Johns Hopkins University. And I didn’t feel sad or upset or devastated. I mean, by that time, I already knew something was wrong. It was as if there had been progress in the field, that they knew something to tell me. They had a framework that could help me understand her and perhaps guide her in her future.
ROBERT MACNEIL: So does your way of looking at it mean that you don’t think that whatever the cause of autism is or causes, that more and more cases are being created by those causes, and I think it’s a fairly level arrival of new cases in the population?
DR. RICHARD GRINKER: Somebody at the Centers for Disease Control, a real expert, she asked me the question, “Do you think that at some point, the autism prevalence will level off? We’ll find all the cases and we’ll reach sort of a saturation level. Awareness will be as high as it can be. The diagnostic criteria will be accepted and the metrics, the tests will be really good and valid and reliable.” And my answer to her question was, “No. The only way that you can ever get something to level off is if society stops changing.” As long as we continue to change and have new ideas and change the criteria for illnesses and have different types of services for people, the diagnoses will change. The constructs that we use to understand people will change.
ROBERT MACNEIL: Yeah, but that suggests, if I may put it this way, that suggests that the phenomenon of autism and all that the galaxy of symptoms that it represents, is it a fairly constant arrival rate in the population? And that are not new factors in society, in our environment, in whatever, that are causing it to grow?
DR. RICHARD GRINKER: Well, there is something new in the United States over the last several years during the time in which prevalence is increased. And that is a whole series of social factors. And that has to do with awareness and services and a decrease in stigma, so that people are able to talk about their kids.
And something else, which is really important, called diagnostic substitution. 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. But they were called something different in the past. The value of a diagnosis is whether it means something to us.
If I go to someplace in the world where there’s no service infrastructure at all for autism, does it make any sense to call that child autistic? No, it makes sense to call that child whatever the society finds meaning in. And so where I worked in central Africa, the people who have autism symptoms there, they’re called experts on ethnobotany, or they’re called ritual specialists, or they’re called strange, or they’re called something else. They don’t have a word for autism. Introduce that word autism there. And believe me, you’ll start to see the prevalence increase, because those people will then be put under that framework.
ROBERT MACNEIL: So what would you say to people who study autism and say the secular development in American society of people, couples marrying later and having children later may be, in some part, responsible for an increase in the prevalence of autism? Your attitude seems to be, autism is out there. It’s a fairly constant level. And if only we can find it, we’ll find that it is.
DR. RICHARD GRINKER: Well, I don’t know that autism — I’m arguing that autism is constant, only that there doesn’t seem to be from the epidemiologic evidence any really compelling reason to jump to the conclusion that there’s either an epidemic or some sort of crisis. Could the prevalence of autism be higher today than it was five years ago and higher five years ago and ten years ago? Certainly it could. But the field of epidemiology is a very tough one. And there just isn’t any evidence to suggest that.
On the other hand, there’s a lot of evidence showing all the different ways that the prevalence of autism increased that has nothing to do with there necessarily being a new illness or a new set of features or more children with this set of features.
ROBERT MACNEIL: And yet you have done studies in Korea where you used a different method of counting people, instead of cases that have been identified by doctors, and have been diagnosed, you looked at the population you considered at-risk. Would you describe that method and what results it produced?
DR. RICHARD GRINKER: Sure, with a bunch of colleagues, from McGill and Yale and other places, we did a study in South Korea to try to figure out what the prevalence of autism was there. And what’s different about our study from, say, what the CDC does is the CDC is looking at records. In South Korea, the word autism is so stigmatizing. And it’s just so rarely used that we couldn’t look at records.
So what we did was we gave surveys, very well-established surveys, to teachers and parents of all the 6-to-12-year-olds in a fairly large city. So we ended up screening about 38,500 children. And then those who screened positive on this very sensitive test. So we’d find some false positives, but just a very, very sensitive screener, we then brought in for multi-hour, intense, clinical assessments, using the gold standard tools that are available to physicians and psychiatrists today.
And what we found in South Korea was that there were many, many cases of autism where there was only a little bit of a hunch that something was wrong. And there was no record in these children’s history of ever seeing a doctor about a problem with a social or cognitive impairment. There was no record from their teachers about it. The parents had concerns, but the teachers might not have. We found more people muddling through mainstream schools who had autism than we found who were in special education classes and receiving services.
ROBERT MACNEIL: And what rate did that produce?
DR. RICHARD GRINKER: Well, that yielded a rate that was significantly higher than the rate in the United States. I mean, as we’re speaking, the publication that we’re preparing is in press. And so I actually can’t say what that is at this particular time. But I can tell you that it is way– significantly higher than the U.S., which leads me to believe that if Americans used the method that we used in South Korea in the United States, they would also find more autism in the United States. Looking at records only tells you about the people that there are records about. What about the people that aren’t getting services?
ROBERT MACNEIL: In states where there are fewer services?
DR. RICHARD GRINKER: In states where there are fewer services, or even in states where there are a lot of services, but there are people who are for whatever reason, maybe it has to do with poverty or stigma, not seeking services. There are a lot of people like that. And if you look back at the history of psychiatry, the greatest problem in the whole history of psychiatry is getting people to care. There are so many barriers to care.
The wonderful thing about the changes in the United States, the awareness of autism, the decrease in stigma, is that people are getting to care more. They’re getting treatment. So, you know, I look back on this as a parent, and I say, “Okay, there’s this big prevalence 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: All the talk of the numbers and the methods used to arrive at those numbers, what is really important in all this? What really matters in all this?
DR. RICHARD GRINKER: Well, I think fundamentally as a parent what matters is that you do something to help this child to achieve. Somebody said to me recently, an adult with autism said to me, “Autism’s not just a spectrum. It’s also a spectrum of outcomes.” And what really matters, of course, is whether or not people get better. They become more able to lead a fulfilling life and participate in our culture.
Now my daughter, had she been born 30, 40 years ago, I mean, I just don’t know what future she could have had. But with the prevalence increase, with the rise and awareness and the understanding that people have about autism, that autism isn’t necessarily some devastating, horrible, disorder that is going to confine you for an institution for the rest of your life, she has opportunities now she never would have had before.
She has had jobs and she’s getting through high school. And she’s a delightful, happy, wonderful child. And I look at her and I don’t see epidemic, you know? I look at her. I see my daughter who’s making progress because of all the progress we’ve made in the United States.
ROBERT MACNEIL: But does it require a continuing, apparent rise in prevalence to alarm the public, beyond the autism community? Politicians, decision-makers, funders, researchers, into putting the kind of full court press on, continue that press to discover the causes of autism and potential cures or treatments for it.
DR. RICHARD GRINKER: Well, I think finding the cause of any very complex disorder is very difficult. It’s been a century of research on schizophrenia and the fields haven’t come to that much of a conclusion about what causes schizophrenia. The number of researchers who’ve worked on these complex psychiatric and neurological disorders is overwhelming. So yes, it takes time and science is slow and science is incremental.
The one thing I can say about autism in comparison to other diseases, though, is that the response of the scientific community, the response of the government in providing funding, has been unreal. You just don’t see this very often in science. And I think that some years down the line, a historian of science is gonna look back and say, scientists really attacked the topic of autism as they did almost no other disorder.
ROBERT MACNEIL: And it’s funny because many people in the autism community, the advocates, parents or supporters of parents will say that why is autism apparently so underfunded compared to other conditions and other illnesses, in terms of public money, private research money?
DR. RICHARD GRINKER: Well, you know, if you think about– this is from an epidemiologic point of view. You know, you think about the prevalence of autism. And just for the sake of argument, say it’s one percent…
ROBERT MACNEIL: Which would fit with the one in 110 of the recent CDC figure…
DR. RICHARD GRINKER: Yeah, one in 110; one percent. Well, what else is there within the field of, say, what the National Institute of Mental Health funds? Anxiety disorders, much, much more than one percent. Depression, much more than one percent. 10 percent of all Americans take anti-depressants. Eating disorders, six percent. Mental retardation, three percent. Schizophrenia, between one and three percent.
You start to look at the prevalence of all of the different things that we have in society that need our attention and people that need help, including things like eating disorders. I mean, anorexia is frequently fatal. Then you can understand that the money has to be spread around. The effort has to be spread around, in order to understand all of these many different things that confront us. It’s a major challenge. I’m not trying to say that autism shouldn’t be funded. I’m just saying that it’s one disorder. There are many, many others that scientists have to address.
ROBERT MACNEIL: I’m gonna come back to the question I asked again. Are people right in thinking that autism is increasing?
DR. RICHARD GRINKER: So the question is, whether people are right in– believing that autism is increasing. And I guess the only way I can answer that question is to say that more and more people are being diagnosed with autism than ever before. And that I can say with certainty. What they would have been diagnosed with 20 years ago, 30 years ago, we have a handful of things they could have been diagnosed with.
Look, a century ago, there were a few diseases. There was insanity, idiocy– dementia praecox, a few names that were used a century ago. Today, there are more than 300 different categories. So yeah, there are diagnoses that come and go. There are fads of diagnostic practice. Bipolar disorder among children was really, rapidly rising and now it’s starting to come down a little bit.
I think we might see autism go up. We might see autism go down. It all depends on the consensus of the people who are caring for these patients to figure out which diagnostic category serves them the best. You know, there’s a woman, a wonderful scientist at the National Institute of Mental Health whose name is Judy Rappaport. She’s been working on childhood schizophrenia and a variety of disorders, especially obsessive-compulsive disorder, for several decades. And she has both a small private practice and she has her research.
And what she told me is that in her research program, she is going to only give a child a diagnosis that fits exactly that research protocol. She’s as rigorous as possible. But when it comes to a child in her private practice, she said, “We’ll call that kid a zebra if he needs to be called a zebra to get the educational and other services that he needs and deserves.” So the good clinician or the great clinician isn’t necessarily going to be a slave to some kind of rigorous, scientific set of rules, but is going to give the diagnosis that helps that child the best at a particular point in time.
ROBERT MACNEIL: So is the diagnosis of autism being stretched, if that’s the word, in order to help get children to treatment?
DR. RICHARD GRINKER: Well, one could make the argument — I’m not making this argument, but I think it’s one, certainly, that’s open for debate, which is that the diagnosis of autism is being used promiscuously. And that the spectrum of what counts as autism has grown to be so wide to include the profoundly cognitively disabled and non-verbal as well as the brilliant, genius, Silicon Valley entrepreneur. That when you do that, you’re essentially impoverishing the concept. You use a concept that describes everyone and eventually it describes no one.
ROBERT MACNEIL: As a public health issue, with a huge cohort of adolescents with autism about to become adults, and their support that has been available through their educational years ending, is the lifelong support that many people with autism are going to need, does that not create a national health crisis in terms of public policy?
DR. RICHARD GRINKER: Well, I think that’s in terms of what the supports are that people are going to need as adults,we do need a lot more attention to that. There need to be more group homes built, more attention to what life is like for some of the more severely disabled autistic children who are in institutions.
But what the research is showing right now that’s looking at adults who are currently in institutions is that as low as 30 percent, as high as maybe 50, 60 percent of people who are in these institutions who are adults, they might be 40, 50, 60 years old, actually do qualify for a diagnosis of autism. So these adults who are already in care are in situations that need improving as well. So we not only need to provide people with care as they– leave the educational system and to some extent sort of go off the radar screen. But we also need to take care of those people who are already in these– whether they’re institutions or workshops or living at home and– need more support.
ROBERT MACNEIL: But don’t those numbers suggest a health emergency in terms of what the social security or other public funding systems are going to need to produce.
DR. RICHARD GRINKER: Well, what the current rates of autism suggest is that the services for adults, under the category of autism, need to be enhanced. And they need to be built up. Now that may mean shifting some of the categories. For example, in the state of Tennessee, at least as of the last time I checked, an adult with autism only receives services when they have a corresponding or additional diagnosis of an intellectual disability, which they used to call mental retardation. So that means that most of the adults with autism who are getting services actually are there under the code of mental retardation.
So what we need to do is figure out how to give people services under the category of autism, because that’s the category kids are getting now, who are going to grow up and become adults. They need services that are guided by that framework of autism. And not by these older terms or misdiagnoses.