Diane speaks with Dr. Roger Kligler who is living with advanced stage cancer on why he's suing the state of Massachusetts for the 'Right to Die' and with Dr Jessica Vitter, and intensive care and palliative care specialist on why better communication is so needed between doctors and patients facing end-of-life issues.
Guest Host: Susan Page
A new report from the Center for Disease Control shows the incidence of autism in American children has dramatically increased over the last decade. A debate is raging over why. Some experts say better detection is the reason. Others say it reflects the broadening definition of autism. At the same time, medical breakthroughs have given doctors and researchers hope that they may soon be better able to identify what causes autism — and how to treat it. What new research means for our understanding of autism.
- Lauren Kenworthy director, Center for Autism Spectrum Disorders,Children's National Medical Center
- Jennifer Walsh parent of a child with autism
- Amy Harmon national correspondent with the New York Times, she has written extensively on autism
- Dr. Thomas Insel director of the National Institute of Mental Health/NIH
MS. SUSAN PAGEThanks for joining us. I'm Susan Page of USA Today sitting in for Diane Rehm. Diane is recovering from a voice treatment. The number of children in the United States with autism has nearly doubled in the last decade. New research is giving doctors and parents hope of better understanding this complex condition.
MS. SUSAN PAGETo talk about what's happening and what's ahead, I'm joined in the studio by Thomas Insel from the National Institute of Mental Health, and Lauren Kenworthy from the children's Center for Autism Spectrum Disorders, and Jennifer Walsh, the mother of a 4-year-old boy with autism, and, joining us on the line from New York, Amy Harmon of the New York Times. Welcome to "The Diane Rehm Show."
DR. THOMAS INSELThank you.
MS. LAUREN KENWORTHYThank you.
MS. JENNIFER WALSHThank you.
MS. AMY HARMONThank you.
PAGEWe're going to invite our listeners to join our conversation later in this hour. You can call our toll-free number, 1-800-433-8850. Send us an email to firstname.lastname@example.org, or find us on Facebook or Twitter. Well, Amy Harmon, let me start with you. We've had this new report from the Center for Disease Control showing this rapid increase in autism over the past decade. Is it increasing, or are we just getting better at detecting it, or what's happening?
HARMONWell, the CDC has been tracking the prevalence of autism for over a decade. And every time it releases a new estimate, the rates have gone higher. So it's to -- in its 2007 report, it was one in 150 American children were estimated to have an autism disorder. In 2009, it was 100 -- one in 110. Now, it's one in 88. And so, you know, that's almost double the rate of even just five years ago, so, obviously, that leads to the question of what's going on.
HARMONI mean, I think it's important to note that the higher rates don't necessarily mean that the actual incidents of autism is increasing. It may, and many experts believe that some portion of that increase is the result of environmental factors that have not been pinned down. But, you know, the director of the CDC, in a phone call with reporters last month, made a point to say that the increase could be entirely due to better detection.
HARMONAnd, you know, I think one reason he went out of his way to make that point is because, in the past, the increase in these rates have led to a lot of speculation about the role of environmental factors that had not necessarily any basis in scientific evidence, so -- like the idea that autism is caused by childhood vaccines, which has been thoroughly debunked. And so -- but even though it has, this has lead to, you know, a serious public health problem in places where parents are refusing to get their kids vaccinated.
HARMONAnd there have been outbreaks of measles and whooping cough. So, you know, I think there's an effort to say, well, we don't know. You know, there -- and there may be environmental factors involved. We don't know what they are. But some large part of the increase is due to just the fact that doctors and teachers and parents are getting better at recognizing the hallmark traits of autism and identifying them.
PAGEYou know, Amy, I wonder if you could put that figure in some context. So the CDC now estimates that one in 88 children in the United States has an autism disorder, which seems like an incredibly high number to meet. How does that compare to, say, the number of kids who have asthma or some other thing that we think of? How -- what context can you put that in for us?
HARMONWell, maybe -- and, actually, Thom Insel might be a better person to do that kind of comparison. It is a high number. And, I guess, I will say that one other factor in the higher numbers has to do with the fact that in the mid-1990s, there was a broadening of the diagnostic criteria for autism.
HARMONThere was a broadening of the -- there was sort of an effort to say, well, you know, we used to say that it was primarily kids who were, you know, really severely affected, whose symptoms were very obvious, who were, you know, profoundly withdrawn, didn't speak. You know, many had an intellectual disability. They could be self-injurious. They could be aggressive toward others. It's sort of what we think of as classic autism.
HARMONAnd then there was this sort of realization, well, that there was another group of people that autism is really a very wide spectrum and that the fundamental trait is a social -- is difficulty with social interaction and that even people who, you know, had normal or higher than average IQs could have this social disability, this social impairment and that they were -- could be called autistic, too, and that their disability was less visible but still there. And so there was sort of this broadening of the definition. And so, of course, the number has gotten bigger as a result of that.
PAGESo, Thomas, let me ask you, can you put that one in 88 number in some context?
INSELYeah, it's -- so this takes us to a pretty high rate. If you think about this being nearly 1 percent, or in the case of boys, I think it's now 1 in 58, something like that...
HARMONOne in 54.
INSELOne in 54. So that's -- these are high numbers relative to juvenile diabetes, which -- it's about three times more common. Asthma, I think, is in that general range. Important to remember that, while we're very sensitive to this increase, this isn't entirely unique. We've seen about a three-fold increase in food allergies in the last decade, a marked increase in asthma in juvenile diabetes.
INSELYou've probably seen those numbers where pediatric bipolar disorder went up forty-fold in a decade. So, as Amy suggests, sometimes there are diagnostic trends that can really drive numbers in a very big way. But that's not to say that we can just rule this out or dismiss this as being just increased detection or increased ascertainment. Very real possibility here that there are indeed more children affected, and, until we have evidence to the contrary, it's best to assume that.
PAGELauren Kenworthy, what do you think? Do you think there has been a real increase in the number of kids with autism? Or do you think it's a case of defining it more broadly and diagnosing more often?
KENWORTHYI think, you know, as Dr. Insel said, I think it's very difficult to parse those different possibilities. I know just having, you know, run the autism center at Children's for the last 15 years that the increase in awareness is striking. And, you know, there have been really major improvements in the way that we go out to look for children with autism.
KENWORTHYPediatricians have been told by their professional society that they need to screen for autism in babies, and that's really important. But what it means from my perspective, you know, running a center in a big hospital is that, whereas 15 years ago, everybody who made it to us was sort of a more classic clear case of autism, now, about half the kids who come through our clinic, we don't diagnose with autism.
KENWORTHYI think that's a good thing. I think the fact that it's all over Time and Newsweek and people are thinking about it and pediatricians are asking about it means that children are getting assessed, and they're getting the services that they need as early as we can possibly manage to identify them and provide those services.
PAGESo, Jennifer Walsh, tell us about your -- the experience you had with your son.
WALSHSure. My beautiful son, he's 4 years old today. When he was about 18 months old, we noticed that he wasn't speaking quite as much as we -- as all the books said that he should have been at that age. You know, I was kind of one of those uptight first-time moms, and I counted all the words and wrote them down and reported to our pediatrician when he was 18 months old. You know, he was maybe a few words shy, but she had done the screening, you know, at the appointments along the way that Dr. Kenworthy mentioned.
WALSHAnd he had met all the milestones, and she wasn't overly concerned. But, I guess, because I seemed probably overly concerned, she said, you know, it wouldn't hurt if you want to go see a speech therapist to just see what they say and maybe just get ahead of it in case there is any sort of a little delay there. But she really thought nothing of it. So we immediately started with speech therapy twice a week. That lasted for about nine months.
WALSHAnd I should say at the beginning that when we first started working with the therapist, I said, do you think there's anything else going on here? And, again, I figured I was just being paranoid, but they both said that they thought not at all, that he was, you know, perfectly healthy and typical and just probably had a bit of a delay and that we'd work through it. So nine months later, they both discharged him because they said he had met and exceeded all of his goals.
WALSHHe was talking up a storm, and they just really didn't think that the therapy was necessary anymore. So we sort of thought, OK, you know, breathe a sigh of relief. We're out of the woods, no reason to be concerned. And then about maybe six to nine months later when he started preschool, we started getting some reports from the teachers, you know, when we would have our parent-teacher conferences, just that he seemed like he was struggling socially.
WALSHBut he was still young enough that it wasn't strikingly odd, you know? He -- there was a lot of parallel play going on, but he kind of kept to himself and was distracted during circle time and things like that. To make a long story short, there were a bunch of little hints along the way. All of the therapists that we had worked with and doctors that we had seen thought that there was probably nothing going on.
WALSHAnd it's not their fault. My son kind of fits the perfect description that Amy used about he's very high functioning. His challenges are really social. So it was very tough to detect, but I just kind of had this nagging feeling all along. And so, ultimately, his pediatricians suggested we have the child development assessment, and that's when he was officially diagnosed.
PAGEAnd how's he doing now at four?
WALSHHe's absolutely just the most amazing, incredible child you could ever imagine having. He -- we've had a lot of therapy. It took a long time to get the right therapy cocktail, as I call it, you know, together. And that was very difficult to achieve. But he's in -- you know, for a lack of a better term, he's in a mainstream preschool where he gets a little extra support when he needs it. But he's absolutely thriving.
WALSHHe's happy. He's just so much happier. He can express himself better than he could a year ago. He's calmer. We've just addressed all the sensory issues and so many other things. We still have our challenges, and he works so hard every single day. But he's just doing incredibly well.
PAGESo, Dr. Insel, we know there's a debate going on about the definition of autism. Tell us about that and the idea that the definition of autism needs to be narrowed or maybe narrowed when the new definition comes out later this year.
INSELSusan, the first point to make is that this is not one single simple disorder. Sometimes I feel like we should be talking about the autisms. And how you draw a circle around that is a little bit like asking, how do you draw a circle around fever? And there's this set of symptoms that come up here, but within that, there may be many, many different illnesses that contribute, including some cases in which that's not really an illness whatsoever but a sort of a phenomenon.
INSELSo let's talk about where the current debate is because the diagnostic approach that we have in -- at least in the United States and it's used by other parts of the world, as well as the "Diagnostic and Statistical Manual," the DSM. That's up for revision, and there's a debate about just how broad to make that circle for autism.
PAGEThat's Dr. Thomas Insel. He's director of the National Institute of Mental Health at the National Institutes of Health. We're going to take a short break. When we come back, we'll continue our conversation about new developments and findings when it comes to the causes and treatment of autism. We'll take your calls, 1-800-433-8850. Send us an email at email@example.com. Stay with us.
PAGELauren Kenworthy, we were talking before the break about the definition of autism. Do you think the definition's gotten too broad? Should it become narrower?
KENWORTHYYou know, I think that there is always a tension, as Dr. Insel was saying. This is a behaviorally defined disorder, right? And so you're asking clinicians, like myself, to look at a child and say, you know, what are his -- are his social skills normal or not normal? Or -- there's -- it's a fuzzy set, and we want to be careful to make it as precise as possible. And I think that some of the efforts of the DSM-5, the new committee trying to revise the diagnostic criteria, are really important in that regard.
KENWORTHYAnd they've done some very key things about helping us to be more specific about intelligence and language abilities within the context of autism that will improve treatment and identification. But I think it's also very important to recognize that when we talk about narrowing the definition, we are excluding a group of children that really benefit from being understood as having these core social and also repetitive behavior deficits. And they need treatment for that.
KENWORTHYAnd just as we were hearing earlier, you know, many young children who are higher functioning are later to get identified, and we lose time there in terms of intervention. We know early intervention is very important, so we want to make sure that we catch those kids as early as possible and don't set them up for misunderstanding. Kids with high IQs -- many children with autism are actually physically beautiful kids. You know, they don't look different.
KENWORTHYAnd if they walk into a classroom and it's not understood that they have really a social learning disability, kind of like dyslexia for understanding faces or understanding people's social motivations, that they're going to be misunderstood as bad kids or kids who aren't trying. And that's something that I feel very strongly about. We want to recognize those kids and help them and so that they can benefit and become much effective in mainstream situations, where they have a lot to offer.
PAGESo, Jennifer, what could it mean to you and your family if the definition got to be narrower? Because it sounds like your son's doing great, and maybe he would be at risk of no longer being defined as having a disorder on the spectrum.
WALSHYeah, that's absolutely of great concern to me. He is doing incredibly well, but had we not started the -- you know, all the various therapies so intensely for the last year, I know that he wouldn't be where he is. And so, especially as he starts to get a little bit older and ready to start kindergarten and go into the public schools, hopefully, I'm definitely concerned about what services are going to be available to him.
WALSHAnd even to the point that Dr. Kenworthy made about just people recognizing and acknowledging his developmental challenges and why he is going to be different from other kids in terms of social interactions and behaviors and other things. And if -- I mean, nobody likes the idea of being labeled, but in some ways, having a label can help explain things about the kids that might otherwise go unnoticed or misunderstood by teachers and other children and other parents.
PAGESo, Amy Harmon, what difference do you think it makes that -- having this diagnosis? What difference does that make for families with kids with autism?
HARMONWell, I mean, like Jennifer and Lauren have said, I think that early intervention and just an awareness on the part of teachers that, you know, this child is not just misbehaving is really -- has been an important thing.
HARMONI mean, you know, I've also talked to people who are now adults with autism, who came to their diagnosis later in life and who felt like just such a sense of relief and liberation knowing that their oddness and their awkwardness and the difficulty that they have making friends or forming, you know, intimate relationships or, you know, holding a job sometimes is not some sort of character flaw, that it's based in the wiring of their brain, and that their, you know, their maybe sort of being aware of it can maybe lead to efforts to, you know, do something about it in a productive way.
INSELSusan, you started by saying that there is a debate about the new diagnostic criteria, and I think a lot of that debate is driven by the concern that if the diagnostic criteria become too specific, that too many kids would be left out, wouldn't get the services they need. And there has been some press report that actually suggests that. But I think the data that are coming out from the field trials -- and I haven't seen all of this, I've just seen the first cuts -- suggest that this is probably not the case.
INSELIt looks like actually the numbers are going to be, in terms of prevalence, are not going to change that much from creating criteria that are a little more specific, but also are organized in a somewhat different way than the current ones have been.
PAGESo maybe not a big change. You know, you mentioned earlier that it's much more common in boys than girls, one out of 54 boys, you said. Why is that?
INSELWe don't know. We really don't know. This has been one of the constants throughout the 40 or 50 years of research on autism, even back to the very first description. It's always been male dominant, about 4-1.
PAGEDo you have a theory, Lauren? You work with these kids all the time.
KENWORTHYWell, I mean, we know that autism is a genetic disorder. It's one of the most highly heritable disorders of these early developmental disorders. And so there's some question about whether there may be some sex-linked factors in the genetics of autism. There are other theories that are out there. Simon Baron-Cohen talks about the extreme male brain. I don't know how Dr. Insel feels about that. He's the only male in the room. But, you know, I think, as Dr. Insel says, we do not know the answer to that. People speculate.
PAGEAnd we know there's a big genetic component, but there also seems to be -- studies indicate a big environmental component, for instance, the recent study on the age of fathers or the obesity of mothers. Can you talk about that, Dr. Insel, about what we're learning about how environmental factors can contribute?
INSELAgain, just to put it in context, there are probably forms of autism that are heavily genetic, and there must be, one would think, forms that are more driven by environmental factors. Having said that, we don't yet have a major environmental factor that's driving any sort of an increase in numbers. People who have looked, have looked for many of the potential smoking guns, don't find them.
INSELWhere most of the research is going now is looking for prenatal exposures and trying to figure out what may be happening very early on, probably in the second trimester because the few, good clear pieces of evidence we have that come sometimes from medications, like valproic acid, suggests that it's probably in the second trimester that that matters.
PAGEAnd what is valproic acid?
INSELIt's a drug that's been used as an anti-seizure medication, and so -- not used very often anymore -- but it's one that's contraindicated in women who are pregnant for just this reason.
PAGELet's go to the phones and let some of our listeners join our conversation. Our phone line's full at the moment, lots of people with questions or comments. We'll start with Kristen, who's calling us from Grand Rapids, Mich. Kristen, thanks for joining us.
KRISTENHey, thanks for letting me talk with the group there. I have a 7-year-old with autism that is doing fantastic today. But I wanted to ask the panel a little bit more about the environmental factor side because my son wasn't -- was not autistic when he was born. So, you know, we spent a lot of money on genetics, but, you know, there is a environmental factor there. And I wanted to see if any research is going to be done on, you know, dental amalgam?
KRISTENYou know, the exposure during -- that they receive during -- in the womb, also chemicals in the home, like fire retardant in mattresses, which, you know, is totally illegal in Europe, and also, you know, about vaccines as well, you know, the toxic amount of aluminum?
KRISTENThe FDA says that 20 micrograms is a toxic dose. And if the child gets all the vaccines at two months, they'll receive 1,875 micrograms of aluminum.
PAGEOK. Kristen, thanks so much for your call, and we're glad to hear that your son is doing well. Amy, I think that you had mentioned this controversy over whether there's a link between childhood vaccines and autism. What have studies indicated about that?
HARMONThey've indicated that there is no such link. I mean, I think it's important to emphasize that. I think that these most recent numbers, in fact, you know, if there was any lingering doubt, should speak to that fact because if there was -- I mean, the theory was that thimerosal, which, you know, an additive in vaccines, was responsible and that -- thimerosal has been removed from virtually all vaccines.
HARMONSo, you know, over the last years that the CDC has been looking, if -- you know, you would've expected those numbers to go down if, you know, if that was the case. In fact, they've gone up. So, you know, I think that the link has been really thoroughly disproved.
KENWORTHYYeah, I just wanted to comment -- really appreciate the caller's comments, and I know how very painful it is to watch a child appear to descend into autism. But it is important to understand that autism is something that we typically don't see clearly in children until they're about 2 years of age or 3 years of age. And, you know, even those of us that are trained to look for it don't confidently diagnose it until 2. What's happened with immunizations is that many children are getting immunizations right around the time when autism is starting to appear.
KENWORTHYAnd, like all of us human beings -- particularly if it's your child, a person that you care so strongly about -- we're going to make a temporal link and say, well, if it happened at the same time, the immunization and the appearance of autism, then they're going to be linked by cause, that one caused the other, but, in fact, that's not the case -- that they happen in a general time frame, that's the same, but they are not related.
PAGEAnd when a child is an infant and seems to be developing normally, and then hits this age and seems to be developing these problems, does that mean, Dr. Insel, that they didn't have autism when they were born? Or does it mean that we just weren't able to recognize it?
INSELDevelopment is a process of unfolding, and often there can be a lesion or a problem that was present much earlier that you just don't see. So something that would affect the development of language is not going to be apparent in the first six months and maybe not in the first year.
PAGEAnd with children who are very young, who are 6 months old, are there ways now, since we have these amazing new tools to look inside the brain, to identify -- even before you could see through language, for instance -- that a child either has autism or seems to be disposed that way?
INSELAbsolutely, and that's where a lot of the research is going, is trying to understand whether we could develop what we call a biomarker, something that simply doesn't depend only on behavior or on observed symptoms, but can begin to look at how the brain is developing. We think about this as a neurodevelopmental disorder. So the challenge now is to begin to diagnose it in just that way and to understand what's happening in brain development for those children who are at risk.
WALSHI just wanted to add, from my own personal experience, that I didn't realize it at the time, but, looking back, my son was a really, really tough infant, really tough getting him to sleep, stay asleep. Really, overall, it was an issue of getting him -- keeping him calm, despite everything that we tried. And at the time, you know, at first I thought, well, I'm just a first-time mom. But as time went on, we realized it was much more intense than that.
WALSHThe doctor said, oh, he has reflux. They gave him medicine for reflux. That didn't do anything. We ultimately figured out part of it was an allergy problem. But looking back now, I firmly believe that it was my son has really intense sensory processing issues, and, I think, it's, like, 80 percent of the kids on the spectrum also have those issues. And that is exactly what was going on when he was an infant. So I am completely confident, just in my case, that he was -- this is the way he was born. And it's not anything that's happened since.
PAGEI'm Susan Page, and you're listening to "The Diane Rehm Show." We're taking your calls. Glad I've had the call from Kristen. Let's go now to A.J., who's calling us from Indianapolis, Ind. A.J., you're on the air. A.J., are you there? I'm sorry. We're not -- I'm not hearing from A.J. I hope we're not having trouble with the phones. We had some trouble yesterday with the phones. Let's hope that it's not occurring again now.
PAGEWe'll go to Smithfield, R.I. and talk to Christopher. Christopher, hi. You know, we may be having problems with the phones again. I apologize. We'll be working on that. You know, one thing that I'm curious about is, if you have early detection and treatment of kids who have autism, is it possible to grow out of autism? Is there a time when they become so -- you're so able to deal with the associated problems that they no longer seem or are autistic?
KENWORTHYThere's really interesting emerging data on that. And it -- some data is showing that maybe about 10 percent of kids who get very intensive early intervention, they may not totally grow out of it, but they become somewhat like Jennifer's son, much more able to interact in mainstream environments effectively. And that's our goal for a lot of these guys. As we've expanded the diagnosis, we now have over half of the kids on the autism spectrum who have average or better IQs.
KENWORTHYAnd some of them are really very smart, and they have a lot to offer society. And so the goal is to get them out there in, you know, typical social interactions and typical school settings and moving on to typical work. And that's something that we're making progress by leaps and bounds with.
PAGEAnd that'd be one of the reasons you'd want to have really early diagnosis of these kids. Amy, please, go ahead.
HARMONOh, I was just going to add that I think that, you know, some of the people that I talk to who are, you know, sort of -- they're sometimes referred to as higher functioning, I tend to think of them as more just having a less visible set of impairments. But they talk about learning to mask their, you know, autistic traits, you know, so that they can, as Lauren was saying, they can interact more "normally" or, you know, they have a better success at, you know, with their jobs or friendships or relationships.
HARMONBut they also talk about that as being a very exhausting process, that, you know, that, you know, say, you would naturally flap your hands or do some other kind of repetitive movement that would, you know, that often autistic individuals do just to -- whether it's to relieve stress or for whatever reason. But you need to not do that, you know? Or it's painful to meet somebody's eyes, but you do it because you know you're supposed to in order to have a normal social interaction. But that takes a toll.
HARMONAnd so when I -- so I recently wrote about sort of the skepticism that this was -- that the condition was being overdiagnosed because we are attributing it to sort of better detection and a broader diagnosis. You know, I was hearing from a lot of people who are saying, well, oh, these parents are just looking for an out as to why their kids, you know, aren't behaving right, like they should just, you know, discipline them better or, you know.
HARMONAnd I think, you know, the reaction that many parents have and individuals with autism have to that is to say, well, you know, it's -- first of all, it's not just bad behavior. It's -- there's a difference between someone who flouts the rules of social engagement and who just, like, can't perceive them, you know, just can't perceive them. Or -- and then there's also a difference between, you know, someone who is making that effort and who has, you know -- perhaps they've had these early interventions, and they can do more social interaction.
HARMONBut it -- but the -- they also feel like they need assistance, whether it's at school or outside therapy, which the diagnosis often confers, you know, an ability to register with the disability services at your school or to get extra services. And so, you know, skeptics are sort of saying, well, you know, these kids, this is just sort of normal variation in human behavior. Why do they need a diagnosis? And the response to that is let's -- it's actually -- you know, it may seem more normal than it is, but there's a big effort that goes into seeming that way.
PAGESuch an interesting point, Jennifer, you mentioned how hard your 4-year-old works when he goes to his mainstream nursery school.
WALSHWell, and one of the things that I wanted to add to what Amy was saying is we probably spend the vast majority of his time now in social skills therapy, whether it's in the classroom and he's got kind of -- one of the teachers is helping facilitate, or we do independent playgroups. And that is where he's the most challenged. Without that, it would be tougher on him.
PAGEWe're going to take another very short break. When we come back, we'll try to go to the phones if we can, and if not, we're going to read some emails. We'll continue our conversation about new research into autism, what we're learning and what we have still to learn. Stay with us.
PAGEWelcome back. I'm Susan Page of USA Today sitting in for Diane Rehm. With me in the studio for a discussion this hour on autism is Lauren Kenworthy, she's director of the Children's -- Center for Autism Spectrum Disorders at the Children's National Medical Center, and Jennifer Walsh, the parent of a 4-year-old boy with autism, Dr. Thomas Insel, director of the National Institute of Mental Health at the National Institutes of Health.
PAGEAnd joining us by phone from New York is Amy Harmon. She's a national correspondent with The New York Times, and she has written extensively on autism. Well, I think we've got A.J. back. Let's see if we can get him on the phone. A.J., hi, are you there?
A.J.I am, I hope.
PAGEYes, we can hear you now. Thanks so much for calling back.
A.J.I just wanted to say that one thing that I don't think gets reported on when we talk about the increase in autism is that -- in the diagnosis of autism is that our culture has changed. A lot of kids that were in school two generations ago, three generations ago might have left school because they weren't doing well by seventh or eighth grade. And because we lived in two and three generation families in our homes, those kids stayed at home and had folks that took care of them.
A.J.They might have found things to do in their community. They might have just stayed at home. If they were agrarian, they found things to do on their farm, and they were incorporated into the greater life of their extended family. We live in small families now. We live in single-family households where both parents frequently work or in single-parent households, and we simply don't have the ability to manage all of what taking care of an autistic child entails on our own.
A.J.And so we need those services that's provided by the school and the greater medical field, and so we push for diagnosis much earlier and more frequently. And I think that that has a lot to do with why there's an increase in -- that's one key to why there's a greater number of diagnoses.
PAGEA.J., that's a great point. Thomas Insel, what do you think?
INSELWell, A.J., I think it's an interesting point. There actually was a study that tried to go after just this kind of an idea. They looked at the whole population within one area of England at every age, and the interesting thing about that was they found a prevalence of about 1 percent, which isn't too far off from what this new CDC study suggests. But it didn't change across the lifespan, suggesting that, actually, maybe the same prevalence was there many, many years ago, just as you suggest.
INSELNow, whether that's going to prove to be true in other areas is not as clear. That was a pretty big effort and involved about 7,000 people with a diagnosis. So pretty extraordinary kind of initiative, but it does suggest that some of what you're suggesting is possible, that, actually, there's been a lot of autism around for a long time that's just has been called something else or hasn't been called anything at all.
PAGEAnd it's interesting. A.J. raises a point of maybe a kid with autism would end up dropping out of school and going to work on a farm. I wonder -- what happens now to adults with autism? You get a lot of services when you're in school, but there comes a day when you kind of age out of that. What happens to these people, Lauren?
KENWORTHYI think that's such an important question. And the data to date has been very discouraging. And I hesitate to say this in front of parents, even because I think...
WALSHOh, I know.
KENWORTHY...it's changing all the time as we have newer and better interventions. But, for instance, a study in 2009 showed that less than a quarter of kids with autism -- of young adults with autism and average or better intelligence -- so bright people -- were able to function independently. The vast majority of kids were dependent on their parents and the like.
KENWORTHYAnd I think that A.J.'s point is important. As society changes, you know, what that means is it can look different. You know, when we move away from a farm, say, to an urban setting, you know, we do see a subset of bright people in their basements playing computer games and, you know, dependent on their parents.
KENWORTHYAnd I think that comes back to a point that Jennifer was making earlier, as was Amy, about it's very hard if you have autism to work within what they call the neurotypical world, you know, to work -- and so one of the things that we do at Children's is we're developing interventions for the higher-functioning kids. And it's a combination of teaching these guys both skills that they need to be more neurotypical in certain settings, to be more flexible, to get social cues but also advocacy for them to learn.
KENWORTHYAnd there's a big group of folks with autism who help a lot with this by writing wonderful books, like John Elder Robison, who's written a book called "Be Different," which is the book to read if you've got Asperger's as a young adult and you're trying to navigate the world, but to also know when they can advocate for themselves and say, you know what, I need a break right now or, you know what, I don't need to have a job where I have to interact with 12 different people every day like you do here on this show.
KENWORTHYAnd so it's that balance of learning some new skills and learning to advocate for themselves that we really hope will change those discouraging statistics about how people function, you know, in adulthood.
PAGEYou know, Jennifer, it must be such -- yes, Amy. Please go ahead.
HARMONSorry. Just 'cause I -- this is something that I've been writing about recently. And this -- sort of this generation of young adults now, who have been diagnosed at, you know, at higher rates sort of starting in the early '90s is when the, you know, the rate started really climbing, and it was because of this -- partly because of this expansion in the criteria. And they're -- so now they're reaching the end of high school.
HARMONAnd arguably, you know, they are better prepared than any generation that has come before because they've been -- there have been, you know, fights to include them in mainstream classrooms. They've gotten earlier interventions. And this question is sort of the -- and they're guaranteed, you know, federal services through the IDEA, the education act for people with disabilities through high school. But so what happens after high school to them?
HARMONAnd, you know, one young man that I wrote about, his name was Justin Canha, who loved animation and was -- is, you know, is a great artist and is sort of about, you know, what would become of him after high school. And one thing that I hope more high schools do is to have this -- a program that really tried to get this young man Justin a job before he left high school because they're -- once you leave high school, it's sort of there's no guarantee of services.
HARMONAnd often, the job matching, you know, it's hard to find a job for these kids. And he found a job. He didn't find a job at Disney, which would have been his ideal job as someone who's obsessed with animation, but he found a job at a local bakery, decorating cakes. And so, you know, it's sort of this effort that will have to, I think, take place starting in school to integrate young adults with autism into their communities in a -- you know, in a better way than they have been in the past.
PAGEJennifer, this must be an issue that is really an anguished question for a lot of parents.
WALSHYeah. I really -- I try to take things one day a time because when I get too far ahead of myself, I start to get really wound up. But I can't deny that I think about this a lot. And I think so much of it, in addition to giving these kids the tools that they need to succeed and to maximize their strengths, because, my gosh, my son in particular and so many other kids on the spectrum have these amazing strengths.
WALSHI think so much of it is about increasing awareness and acceptance among society so that people who are hiring become more aware that a child or a young adult, who may not give the greatest interview, but if you want them to be a computer programmer or something along those lines, they might be light years ahead of anybody else you could possibly interview. So I think it's the coupling of the services for the families and the young adults. But it's also increasing awareness and acceptance among our society that everybody's different, and everyone has something different and unique to offer.
INSELI think we've kind of edged up to what is maybe the most important issue related to these prevalence numbers because if you start to do the math, it looks like, out of the 70 million children in this country, if one in 88 is affected, 10 years from now, we're going to be looking at a very powerful social challenge, which is, how do we provide not only the employment and housing but other kinds of supports that these kids are going to need as they become adults with autism? And I don't think we have fully embraced that.
INSELSo this is going to be an issue beyond the acute prevalence that everybody's looking at when people are saying, what does this mean? What's driving it? And we need to be thinking much more carefully and much more aggressively about what the services are going to look like in 2022.
PAGESo these would need services like group homes, or what kinds of things are you thinking about?
INSELWell, you've heard about some already. As Amy mentioned, the importance of providing employment opportunities, we call that supported employment. At that end of the spectrum where kids are able to begin to work and to become very involved in the things that they may be most passionate about, we have lots of hope, and we should be and particularly positive.
INSELBut remember, this is a spectrum, and you're going to have some children who, at age 18, are still not toilet-trained and still don't have language and are still functioning at a very, very primitive level. What happens for that population, and how far can we go?
KENWORTHYAnd one thing that I like to emphasize is that under the federal special education laws, IDEA, public schools are required to develop transition plans, and it's something that I think that we want to push harder and harder on for the full range of kids -- the kids who are going to need support but also for the more than half of the sort of autism group as a whole that really needs that understanding and maybe a few tricks of the trade. And I would just offer one example of a child that I had worked with who was a brilliant mathematician.
KENWORTHYAnd she actually went to NASA on an internship and was about to fail out of the internship because when she got there, she'd turn on the computer and go straight to the games that she liked to play. And with one simple intervention of removing her access to those games and having her login pop up on what she had to do, she actually solved the problem for NASA on the summer internship and was hired for a job. So sometimes it's about little things that have to do with parents and, you know, clinical teams and teachers helping employment understand what a person needs to be successful.
HARMONAnd I think -- if I can just jump in, I think, you know, we've made this point -- but it's worth sort of stating directly -- that many individuals with autism have great talents and sort of, you know, talents that, you know, may be the result of the same thing that, you know, is causing their disabilities but sort of this, you know, intense attention to detail and enjoyment of repetitive activities.
HARMONAnd, you know, sometimes just seeing the world in a very different way from the way that normal, you know, more conventionally-brained the people see it, so that, you know, the idea that they could be employed is, you know, not crazy. But, in fact, you know, they could provide some great benefit to society if we were able to better absorb them into a workplace.
PAGEYou know, here's an email we got from James. He writes, "My 5-year-old son has autism. He loves to ride the Metro and makes me take him for a train and bus ride every weekend. He's fascinated with the doors closing and the tracks. He's equally fascinated with automatic doors at Target. Finally, he could ride an escalator all day if I let him. Why are those things so fascinating to him?" Dr. Insel, do we know?
INSELI think we fully know. There is something about a way the brain is wired in the children with autism that's different. And at one point, we used to think that these repetitive movements or the fascination with repetitive activities was a way of sort of channeling the chaos in making perceptions a little more tolerable because they are so chaotic for some people. It's not clear, actually, that that's entirely the case. There is something about the way these kids process the world that's different and can be, as Amy was just saying, extraordinarily creative and interesting.
WALSHI just wanted to add, I can relate to that comment so well because my son loves elevators. And he -- I mean, he just loves elevators. And I don't know what the scientific reason behind it is, but I sort of suspect that part of it is he's curious about how they work. I think his mind kind of works that way, want to try to figure things out and understand them. And I think he's very visual and also sort of thinks in pictures, and that kind of goes along with the same thought that just kind of wanting to understand what's going on to make this work that I can't actually see. But it's a really -- it's a phenomenon.
PAGEI'm Susan Page, and you're listening to "The Diane Rehm Show." We're taking you calls. Our phone system's back. Let's go to Keith, he's calling us from Littlerock. Hi, Keith.
KEITHHi. How are you today?
KEITHI was calling in -- shocked you put me on the air. But the thing I was thinking about as I was listening to all these women speak is these are experiences that you described as -- that are autism or within the range of autism that I would characterize as being typical of what I would describe as my lineage. Men older than me and my, you know, early previous generations, my son included, we have the behaviors that you describe as autism, and you know, we might describe several of you as just crazy.
KEITHBut the more precise thing to describe is -- I'm listening to you all describe how you're dealing with your children is that generally that's not how I deal with my son. There are certain behaviors that I, you know, nip in the bud before they get out of hand. And there are other behaviors that I would take the time to, you know, guide him through, perceive other people's activities and how they behave, demonstrate how they are feeling to other people and communicate that in a rational way that they will understand.
KEITHI don't know. It's child rearing from my point of view. From your point of view, it appears to be something much more serious. And maybe that's because, you know, I've got many generations ahead of me that know what this looks like. And so, you know, when we have a young son who behaves this way, nobody hesitates to know just what to do and move on.
KEITHHave you found in the -- in your research any kind of generational things going on with this where people have adapted within their own families how to handle this kind of situation?
PAGEDr. Insel, what about that question and the issues that Keith raises?
INSELYou know what? These kinds of questions, which come up often, reflect the sense that autism isn't really a serious issue and that these are just kind of maybe cultural or sometimes family-based variations on a theme. The reality is that many of the kids who get this label are severely, severely disabled. These are children who will spend much of their life in institutions because they can not be managed in a family.
INSELMany of them have self-injurious behavior. They will bite themselves. They will bang their heads until they bleed. And we're talking about a disorder which, in its more severe forms, is really profoundly disabling, and that's the piece of it that's also increasing. So there is every reason to take this very seriously.
PAGEAnd, Jennifer, I wonder, if a parent out there of a young child is concerned, what should they do?
WALSHWell, I would say, I mean, first of all, we employ a lot of the sort of traditional methods of, you know, trying to deal with my son's behavioral issues. But the reality is is that a lot of them just didn't work, and we found ourselves getting increasingly frustrated. And my son was getting more and more upset, and they just were not working. And so we needed professionals to help us understand what was going on with him, so that we could control his behavior in a way that actually worked. And so that's just sort of the distinction that I would make there.
PAGEAnd, Lauren, just briefly -- we only have a moment left -- tell us what you think parents -- say they have infant or a toddler and they are concerned, they're not sure. What should they do?
KENWORTHYWell, absolutely, they should seek professional help. I mean, we are out there to help them identify what's going on, whether it's autism or not, and identify the proper treatments. There are really well-established treatments that help shape behavior. And you have to remember motivation is different in autism. It's elevators. They're motivated often by more mechanical kinds of things than by a parent's smile or a parent's reprimand. And so we have specialized ways of reaching in and helping those kids to change.
PAGELauren Kenworthy, Thomas Insel, Jennifer Walsh and Amy Harmon, thank you so much for joining us this hour on "The Diane Rehm Show." I'm Susan Page of USA Today sitting in for Diane Rehm. Thanks for listening.
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