Harvard physician Atul Gawande says we need to change the nation's approach to aging and dying. How nursing homes can focus more on patients’ need for human connection, and how end-of-life treatment is actually shortening lives instead of extending them.
April is autism awareness month. In the last decade, the numbers of children in the U.S. diagnosed on the autism spectrum have risen rapidly. The Centers for Disease Control and Prevention now puts the rate at 1 in 110. The 6-year-old grandson of former PBS NewsHour anchor Robert MacNeil has autism. So does the 16-year-old son of producer Caren Zucker. In a new series of reports, they draw on their unique perspectives to chronicle the latest scientific and medical thinking about autism. They talk about the effect of autism on families, educators and clinicians.
- Caren Zucker journalist producer, "Autism Today"
- Robert MacNeil journalist and author
Watch the first of six reports in Robert MacNeil and Caren Zucker’s Autism Now series:
Producer Caren Zucker and ABC correspondent John Donvan, in conjunction with The Atlantic, profile Donald Triplett, a 77-year old man who is the first person who received a documented diagnosis of autism in 1943:
There’s a saying among some parents and researchers familiar with autism: “If you’ve seen one child with autism, you’ve seen one child with autism.”
The PBS NewsHour has launched a special series of reports about autism, a disorder that touches many lives across the U.S. and the world. Autism Now takes a uniquely personal look at the effects of the condition on families, schools and communities. Former NewsHour anchor Robert MacNeil’s six-year-old grandson, Nick, has autism. Along with producer Caren Zucker, whose teenage son is also autistic, MacNeil produced the series which explores the alarming rise in autism’s prevalence, treatment options, possible causes, and more.
Diane asked Both Zucker and MacNeil if they think, as many people do, that routine childhood vaccinations may play a role in the onset of autism.
“Absolutely not,” Zucker said.
MacNeil said his daughter, Alison, who is Nick’s mother, does believe that a vaccination played a role in her son’s autism. “As a journalist who’s been trained to look at the evidence objectively, while I’m sympathetic and understand her suspicion of that, I have to report that all the epidemiological studies that have been done have found no evidence of the connection,” MacNeil said.
One of the reasons that some parents suspect vaccinations as a cause of the onset of autism is because certain autistic children who have appeared to have developed normally for the first year of life sometimes regress between 12 and 24 months – around the same time they receive standard vaccinations.
Autism’s Effects on Siblings
One of the most poignant moments of MacNeil and Zucker’s series is a taped conversation MacNeil has with his 10 year-old granddaughter Nealy, who is Nick’s older sister. MacNeil says that Nealy “feels great distress about the presence of Nick’s autism in the family,” but it’s also apparent that she feels protective of him.
“Sometimes I worry that he might get lost – ‘cause he doesn’t really know what to do,” Nealy told MacNeil.
“Sometimes, when other people say they have lives that seem perfect and when yours – when yours – you have to do something that you don’t like, you don’t usually want to do it and though your autistic sibling does and it seems unfair,” Nealy said.
“Well, one of the things about life is that we all learn we have to do things we don’t want to do, whether or not there’s autism around or not,” MacNeil said.
“Yeah, but it seems like it happens too much,” Nealy said. “I mean, there’s going to be a few times when that happens, but it seems with an autistic older brother or sister, it always happens.”
Ongoing Funding Struggles
“There’s not enough funding, period. There’s not enough funding for children with autism,” Zucker said. “All across the country, there are not enough schools, there are not enough teachers and I think these teachers are the unsung heroes of our society, really.”
Zucker was responding to a caller who said she was dismayed at the lack of support for special education teachers across the country.
MS. DIANE REHMThanks for joining us, I'm Diane Rehm. The "PBS NewsHour" has launched a special series of reports about a puzzling disorder that touches many lives across the U.S. "Autism Now" takes a unique and uniquely personal look at the effects of the condition on families, schools and communities. Former PBS anchor Robert MacNeil's six-year-old grandson, Nick, has autism. Robert MacNeil joins me in the studio with producer, Caren Zucker. She's produced many stories on the condition and she is the mother of a 16-year-old son with autism. "Autism Now,” the series, is appearing on the "PBS NewsHour."
MS. DIANE REHMIf you'd like to join us, questions, comments, 800-433-8850, send us your e-mail to firstname.lastname@example.org, feel free to join us on Facebook or Twitter. Good morning to both of you.
MR. ROBERT MACNEILHi, Diane.
MS. CAREN ZUCKERHi, Diane.
REHMIt's so good to see you.
MACNEILFacebook and Twitter didn't exist the last time I was here (laugh).
REHMI know it and now we're in a whole new world. Robin MacNeil, tell us about your grandson.
MACNEILAs you said, he's six, he lives in Cambridge, Massachusetts with his family. My daughter, Allison, her husband, Dave, and Neely, the 10-year-old older sister. He was diagnosed at the age of two. After -- for long time, appearing to develop normally and then there was -- because his condition is not only the sort of brain part of autism, whatever disconnection or dis-regulation there is in the brain, it is typical of the autism diagnosis, but also, he has a lot of physical illness.
MACNEILGastrointestinal problems, brain seizures and problems with his mitochondria, the tiny part of each cell in the human body that stores energy that is used to energize the system, including the brain. And it took my daughter, Allison, years to get different doctors to actually accurately diagnosis these different problems because they tended to be dismissed by the developmental pediatrician, she was saying, that's just autism, you know. And so now they've been diagnosed and they're being treated and, in fact, in the program that was on Monday night, you saw the doctor who's treating some of this.
MACNEILAnd his physical condition is improving, but he still has a lot to catch up in his social development and language.
REHMHow frequently do these physical problems go along with autism?
MACNEILI don't know that people know. It's something the medical and the pediatric community generally are really just beginning to get hold of and there are estimates for the gastrointestinal problems as high as maybe 50 percent, but then lots of children who don't have autism also have some of these problems, so it's a little difficult to put a number on it, but it's plenty and they're slow to be recognized and appreciated. It's -- some people on our program call it a systemic illness, in other words, the whole system. And they're puzzling out, what is the connection between the gut and the brain...
MACNEIL...and how is that all tied up with the immune system and so.
REHMJournalist and author Robert MacNeil, "Autism Now," is a series currently on PBS on the "NewsHour." And I'm sure if you go to drshow.org, you will find a link to the series on the "NewsHour." And turning to you, Caren Zucker, tell us about your 16-year-old son.
ZUCKERI actually -- it's interesting. I don't talk about my son publicly that often. He's very high-functioning, but I don't like to label anybody, but if you need to look at the spectrum, he's on the higher end of the spectrum, so he has language and he goes to a mainstream school. But he has support and he's had support for 10 years and he's actually going to graduate in two years and that's when you really -- that's the next step. And that's where there's nothing really out, even for somebody high-functioning. If they're not going to college and they still need support, there's very, very little support out there for adults.
REHMHow old was he when he was first diagnosed?
ZUCKERHe was two and a half.
REHMAnd what did you see?
ZUCKERYou know, there's some children that have regressive autism, like...
ZUCKER…Nick, Robert's grandson. Mickey, my son, was always sort of the way he was. So at one and a half, he was sort of dancing around on his toes and reading and we -- he was our first child, so we had no idea that one and a half year olds don't read. And we had no idea that he would mimic everything we were saying and we had no idea that that was called echolalia and all of the little things we couldn't -- we didn't notice that that was a sign of something. We're also talking 14, 15 years ago.
ZUCKERWhen autism was so unknown until he went to a preschool class and it was a preschool class, actually, where there was a two-way mirror and there were 12 children there and my husband and I said -- and they said, everybody go sit and have, you know, juice and crackers and we laughed thinking, these kids, nobody's going to sit. Eleven of them sat down and Mickey was still sort of in his world by himself and they actually gave us the heads-up that we should see a developmental pediatrician and we were stunned.
ZUCKERBecause it's -- for Mickey, it really is the social disability that's really severe with him. He's really not interested in people and if you're not interested in what he's interested in, then you don't really -- he doesn't talk to anybody.
MACNEILYou know, Diane, one of the things that has impressed with working on this series is the extraordinary diversity among children with autism. They may have some few signifying symptoms in common. But for instance, Caren's son, whom I met, taught himself to speak French. She said, when you meet him, and I did meet him once or twice, and she said, If you speak to him in French, and I speak a little French, he'll probably talk to you. If you don't, he won't. And I did and he did. I mean, and very good French. And that's just -- and so many children have such extraordinary different ways of manifesting their symptoms.
REHMManifesting for Nick means something totally different from what it does for Mickey?
MACNEILYes. He has much less language than Caren's son and he still has a little echolalia. That is, for instance, in the piece about him, I buy him a little toy ambulance in a toy store and my daughter says, say thanks to Grandpa. And he says, say thanks to Grandpa. It's -- so that's the way it shows. But now that his physical things are being improved, the illnesses, which obviously must have caused him a lot of distress, he is showing some more personality and there's a little twinkle in his eye and he plays with the lights and the taps in the doctor's office and you can see the kind of mischievous personality emerging.
REHMTell me, Caren, about the parents you wanted to involve in this film and what their reactions were?
ZUCKERYou mean in terms of the ones that we talked to specifically?
ZUCKERI mean, I think that it's an opportunity for parents to have a voice to say what's happening. In the last piece in our series, we talked to a family, the Hammerks, and Zachary is literally going to be 21 years old this year and he's had all the best education. He's very severe. He has limited language, but he's a tri-athlete. I mean, he's a very interesting human being and artist. But once he turns 21, all of the support he's had and he's had state of the art support his whole life, which has gotten him much further than he ever would have been without the support that he's had. He wouldn't have the language, he wouldn't have the ability to do so many things that he does independently if he hadn't had the kind of education he's had, but he essentially falls of a cliff at 21.
MACNEILThere is the Individual's with Disabilities Education Act which mandated that people with disabilities, including autism, receive appropriate education in the least restrictive environment and that ends at 21. And people in Caren's position and hundreds of thousands of other families, because this cohort of adolescence with autism is very large, are facing this and they feel that those people about to become adults not only need support, but they also need continuing education to continue to develop the social skills which come so naturally to children who develop normally and so hard learned by people with autism.
REHMWhat about those young children who are mainstreamed? Who are placed in ordinary classrooms, not meant to deal with children with autism? That has got to be something that teachers, other students, other parents have to deal with, Caren.
ZUCKERWell, I think that autism community has started to educated the mainstream community and that our kids, being out there in the mainstream, have made a difference in other people being more sympathetic. And it essentially takes a community and if the community chooses to embrace the person with autism, the person with autism can flourish in a way that they can't without being embraced. And so the more mainstream children are with autism and the more people get used to them, it's more comfortable for everyone to have better life.
REHMCaren Zucker, she's journalist and television producer. Together with Robert MacNeil, they have produced a series of programs on autism, which are airing on the "PBS NewsHour" this week.
REHMAnd welcome back. April is autism month and journalist and television producer, Caren Zucker, and Robert MacNeil, journalist and author, have together produced a series of films that are being shown on the "PBS NewsHour" with Jim Lehrer this week. You can find a link at our site, drshow.org, to the series on the "PBS NewsHour." It's an extraordinary series which talks not only about the children themselves, but also about the effects on family.
REHMYour daughter, Allison, Robin, has just done extraordinary work to try to not only care for young Nick, but to better understand what's happening in his world.
MACNEILShe was trained as a psychiatric social worker, Allison, and -- but she's really become – created a new career because of Nick's looking after and medical consultations and different diets and medicines and things he needs are occupying her full-time now. But she's really become very expert in the -- as all parents have had -- have been forced to do, because it's really -- one of the phenomenon about this condition is that the research and the public awareness and government support and everything have all had to be parent-driven because they weren't getting the response and the resources and the services they needed. And so parent organizations have banded together and individual parents have kind of forced the issue.
ZUCKERWell, the other piece of that is that each child is so different that -- I mean, we talk about it in the "Prevalence" series, if you've seen one child with autism, you've seen one child with autism. So the spectrum is so different that every parent is sort of the person who knows the child the best. There isn't an expert who's seen a child just like that before.
REHMThere are an awful lot of parents who wonder about food allergies and whether they play any kind of role in the development of autism, Caren.
ZUCKERWell, I think that's more in the MacNeil family that they focus on that. I think that there are differing views that diet can help. I'm not -- that's not something I did for my child. I did ABA, Applied Behavior Analysis, which is behavioral therapy which is really the only scientifically known treatment for kids right now with autism, but, you know, people try different things and it's -- and with autism, you try many things...
ZUCKER...at the same time.
REHMWhat does ABA involve?
ZUCKERIt's a complicated process of -- it's sort of -- it's very behavioral, like skinner when you -- almost. And I don't want to use the rat in the cage, but it really is reinforcement. It's taking step-by-step pieces of a skill that someone needs to learn and as they learn each step, they get a reward or reinforcement.
REHMGive me an example of how that's been used perhaps with your own son or with others?
ZUCKERTeaching him how to brush his teeth. I did -- he couldn't do -- he couldn't hold the toothbrush, he didn't know where to begin. The first thing they taught him was how to take the top of the toothpaste off. And you did -- you may have done that 50 times with some kids, you may do it 500 times until they get the first step. And with each -- each time they learn something, they get -- they either get to -- you know, my son liked to go up and down in the elevator. Somebody might like a piece of candy.
ZUCKERSo every time they do it correctly, they get a reinforcement. And so we went from opening -- taking off the top of the toothpaste to squeezing the tube on -- from the tube onto the toothbrush. And all these could take, you know, 10, 20, 300, however many times it takes for the child to do the small step until they learn how to brush their teeth.
REHMAnd for you, Robin, and your grandson, diet has played some role.
MACNEILYes. And it's been trying different things. And he's -- in trying -- whether he might be allergic to dairy things, whether he's lactose intolerant, whether he is -- whether he is -- what is the substance wheat glute...
MACNEIL...intolerant. What's the word we're looking for?
MACNEIL...intolerant, yeah. As a matter of fact, as his uncle, my older son, is and -- who has to avoid stuff with wheat products and so on, otherwise he breaks out in a rash.
MACNEILBut -- and then they've tried these different things and now he is -- he's healthier physically. I can't remember all the different things and they've been into probiotics to try and improve the mitochondrial situation and it seems endless. I mean, the cupboard that is filled with the various drugs and vitamins and so on that he takes is an amazing sight.
ZUCKERBut I would argue that healthier doesn't cure autism. It may -- if the child is feeling better, they may be more able to learn, but none of these things cure autism. They...
REHMCaren, I know that you, as well as Robin and the parents, you've talked to have looked and looked and looked for better understanding. There are a great many people out there who believe that injections of one kind or another, vaccinations, DPT, that they may play a role. Do you believe that in your own son's case, they may have played a role?
REHMYou do not.
ZUCKERMy son was born the way he was born. But there -- if you watch our "Causes" piece tonight, we really go in depth into what some of the best scientists in the country think about what is causing autism. And I think we're pretty clear now that it's not just in genetics, but there is some sort of environmental insult that is connected with genetics that we're ultimately going find is causing autism. But there are so many subsets of subsets of subsets of kids and so many different environmental things that could be happening, it's going to be hard to figure out which it is.
MACNEILYes. Well, as you probably know from seeing the first piece, my daughter believed that that's what caused my grandson to regress. As a journalist who's been trained to look at the evidence objectively, while I'm sympathetic and understand her suspicion of that, I have to report that all the epidemiological studies that have been done have found no evidence of the connection.
MACNEILNow, the door has just been opened slightly by the Interagency Coordinating Committee of the National Institutes for Mental Health, the committee that drives and steers the priorities in research, and they've just recommended in their report last month that research be done to find, if it exists, a subset of people who were genetically predisposed to have more sensitivity to some environmental toxins, possibly including vaccines. That little narrow opening has been recommended by the committee that drives this subject. But anyway, that's where I stand on it. I know what she thinks and I have to look at all the evidence.
REHMWouldn't we have seen a great many more cases of autism and other problems like that had it definitely been connected...
MACNEILYeah, yeah, absolutely.
REHM...to those vaccines?
ZUCKERAnd we also know, one of the things we learned in doing the series is that Dr. Amaral, who we spoke to is doing research on children with regressive autism, which is children who look typical as they're growing up and then at 15 months, which coordinates with the time that kids get vaccines, all of a sudden disappear. And he has found that in some of the children with regressive autism, their -- they have larger brains, that their brains develop earlier into essentially an adult brain. You want to...
MACNEILYeah, there are two parts of the brain, which his research has found, the frontal lobes and the amygdala, which is an ancient piece of the brain right in the center which deals with fears and anxieties and things. And those parts develop rapidly to something like adult size inexplicably so far in some of these kids and they, as Caren has pointed out, he's found -- he's about to present a big paper on this at an international conference on autism causes in San Diego. David Amaral is the director of research at the Mind Institute, UC Davis in Sacramento. And that -- those correlate with regressive autism, this brain (word?), now...
ZUCKERBut not all of them.
MACNEILNot all of them, yeah.
ZUCKERA subset of those children -- so the subsets have subsets and the way that we're -- they're learning the best way to find how to treat and help these children will be looking at the subsets. And up until now, they've been looking at the whole. And you can't find it with the whole because the children are so different.
REHMCaren, do you have other children?
ZUCKERI have two other children.
REHMBoth of them totally free...
REHM...of any signs of autism. Are they older or younger?
ZUCKERThey're younger. They're both younger.
REHMThey're both younger. How much younger?
ZUCKERI have a son that's 14 and a daughter that's 11.
REHMWhen you became pregnant with your second child, had Mickey already exhibited signs of autism?
ZUCKERI was five months pregnant with my son Jonah when Mickey was diagnosed, so it was a scary time...
REHMIt was a scary time.
ZUCKER…'cause at that time, we already knew that the genetics -- that we had the possibility of having another child with autism.
REHMYou know, a friend called me this morning, a friend who has two grown men, one 47, the other 49, with Fragile X syndrome and she asked me to point out that Fragile X does produce autism, but I gather that's one of those subsets.
ZUCKERThat's actually the one thing you can test for.
REHMExactly. And she wanted to make sure that people understand you can test in vitro for Fragile X, which is one of the causes of autism. And you're listening to "The Diane Rehm Show." Robin, what about the effects on the rest of the family, Nick's older sister, Nealy, for example?
MACNEILNealy, who is a brave and very smart little girl of 10 and a half now was, of course -- she was the oldest child, so she existed before Nick came along and -- which is the reverse of Caren's family experience and she feels great distress about the presence of Nick's autism in the family.
REHMAnd let's hear from Nealy herself.
NEALYI just don't like how autism affects the family. It just -- it seems like it takes up too much time and you usually get really bored of autism 'cause it's in your life all the time.
ZUCKERWhat things would you do if you didn't have a brother with autism?
NEALYIt just seems that a lot of money is spent on Nick's vitamins and Nick's doctor's appointments and Nick's everything and it would change if we didn't have to get all that stuff.
MACNEILI see. Are you worried about Nick?
MACNEILTell me what you're worried about about him.
NEALYWell, if he's going stay autistic for the rest of his life.
MACNEILYeah, and what would that mean if he were?
NEALYI don't know -- it would get harder when he gets older and there wouldn't be as much services to help him.
NEALYSometimes I worry that he might get lost and -- 'cause he doesn't really know what to do.
MACNEILWhen you think about the future with Nick, what do you feel about that?
NEALYWell, I hope that I -- I hope that he doesn't have to stay with me kind of and that I hope that he gets healed soon. Sometimes, when other people say they have lives that seem perfect and when yours -- when yours -- you have to do something that you don't like, you don't usually want to do it and though your autistic sibling does and it seems unfair.
NEALYAnd it seems like they get what they want and you don't.
MACNEILWell, one of the things about life is that we all learn we have to do things we don't want to do, whether there's autism around or not.
NEALYYeah, but it seems like it happens too much. I mean, there's going to be a few times when that happens, but it seems with an autistic brother or sister, it always happens.
REHMThat has to be one of the most perceptive 10 and a half year old's I've ever heard, Robin.
MACNEILYeah, it's making my eyes mist up to hear her again because I have so many times, including when we filmed it there. Yeah, and she's, by no means, alone as the sister or brother of a child with autism. It works on them in a number of ways. They love their brother and sister, they're deeply resentful of the attention, then they're forgiving and understanding and helpful and supportive, feeling responsible for if they don't understand it's dangerous to cross the street of preventing them. And in fact, it's such a phenomenon that -- and Caren knows more about this because she's done stories on it -- there are things called sibshops where the sisters or brothers of children with autism can gather on the weekends with others and compare.
ZUCKERYes. All over the country, there are actually -- and I think it says -- if you Google sibshop, it will come up. There are places for children who are siblings, not just of children with autism, but all disabilities where they go and talk about how they feel about autism and how they feel -- and they have company and they can say, this stinks or they can say, I have to be the grownup all the time or whatever and it's a very safe place for them. And they know that they're not alone in a very different way. I think -- I sent my son to one when he was younger and it had an enormous impact on just making him feel that he had somebody who understood him.
REHMAnd for Nealy, at 10 and a half, to be worried about the future of her little brother.
MACNEILIs deeply poignant.
REHMI should say.
MACNEILAnd she's been hearing -- as a result of the program airing both on the website and on the air, she's been hearing from lots of other siblings.
REHMJournalist and author, Robin MacNeil. Short break. We'll be right back.
REHMAnd if you've just joined us, journalist author Robin MacNeil is with me, also Caren Zucker, journalist and television producer. They have collaborated on a series being shown on the "PBS NewsHour" on autism. April is Autism Month. Robin MacNeil's grandson, Nick, is six. He does have autism. Caren Zucker's son, who is 16, has autism. We're going to open the phones now, 800-433-8850. First to Mary in Sanford, Conn. Good morning, you're on the air.
MARYHi, good morning. My son just turned three and when he was two and a half, he was tested for autism because he exhibited some autistic traits. And at the time, they said he did not meet the criteria for autism, but I was kind of left afterwards thinking, but he still has these issues. What I wanted to say was subsequent to that, he saw a development pediatrician and they said that he had ADNOS, which is on the autism spectrum. But in the midst of all this, I still continue with doing the types of therapies that he would've otherwise have done even if he was considered to be classically autistic and he has improved so much.
MARYAnd what I want to say is that these children, all of them, I believe, can benefit from therapies and early intervention is so important. I think we should all in our society, given the amount of children we expect to be diagnosed with autism, something we should all be big believers in because these children can grow so much and can be mainstreamed and then be just like typical children. They just need a little bit of help here at the beginning.
ZUCKERWell, early intervention is critical and your best shot at your child becoming independent as an adult is early intervention. It doesn't -- it's not a cure. And the hope is, is that, you know, one day we will find a cure, but teaching now is the way we treat with people with autism. And the more that you can start early and work with children, the better chance they have of being successful adults.
REHMWhat is your hope or your plan for Mickey after he graduates from high school?
ZUCKERThat's a question that I think about every day and I'm probably going to do something for a two-year program to try to catch up on some of life skills that he's lost, that he hasn't been able to learn because we've spent so much time on the education. It's a very -- it's a very tricky balancing act if you have somebody who has the capacity to learn, so you want them to get educated so that they can have a profession and be independent, but at the same time, someone with autism, to some extent, needs to be taught everything, depending on where they fit on the spectrum. So there's a lot of things my son needs still to learn in order to be semi-independent. He's not going to be independent. As high-functioning as he is, he will need some kind of support the rest of his life.
REHMWhat kind of support do you mean?
ZUCKEREither he'd have to live in a place where there are other people with autism, someone checking in on him.
ZUCKERI'm not sure yet. He's still growing and I'm still working at it.
MACNEILWe have in our series, and it'll run next Monday night, the story of this boy about to be 21 in June, Zack Hemrick in Mahwah, N.J. And that is exactly the issue and you can see from seeing him what his skills are. He can go to an ATM machine and get cash out, but when he's riding his bicycle, he doesn't understand the gears on the bicycle. His father has to say to him, make it easy, make it easy, but he doesn't -- he doesn't care whether it's easy or hard, you know. He -- his mother describes him, she came downstairs from having been upstairs in their house and found the kitchen full of smoke, something burning on the stove, the smoke alarms all going. He was totally oblivious to that. He was sitting there looking at the computer, twirling in his chair, lost in his own mind.
MACNEILSo you can imagine the kinds of support that boy is going to need.
REHMAll right. To Salt Lake City, Utah. Good morning, Julie.
JULIEHi. My question for you guys is since over the next couple years, the diagnosis of autism is going to be moving from a cluster of disorders to an actual definable spectrum, how do you think that will change people's perception of the disorder and research and treatments and it's kind of becoming a more all-encompassing term?
MACNEILWell, as far as I'm aware, the preparation to rewrite the manual of descriptions and definitions of mental disorders, now it's a DSM4. For DSM5, which will come out in I think about 18 months, they're broadening the spectrum, as I understand it, to include Asperger's just as part of autism, but I don't know of other broadenings. There have also been -- already been some broadenings, that was the subject of our program last night, to the extent that some people, including Richard Grinker of George Washington University, who believes that the reason for the apparent rise in the numbers of kids diagnosed with autism is that we've widened the spectrum.
MACNEILAnd what used to be called by other things, like mental retardation, are now called autism, so there's been a certain broadening. Mind you, a lot of scientists disagree with Grinker on that and think that that may explain only part of the increase in studies, so that's what I'm aware of as the broadening of the definition that I think Julie's referring to.
REHMAnd here's an e-mail saying, "Mainstreaming my autistic son was a disaster. I tried different schools with different programs. The only place we found success is in a special class for children with Asperger's. The school offers the specialized support staff to help him succeed emotionally, socially, academically. Mainstreaming was hard on him, my daughter and our family. It affected my ability to work because the school was constantly calling me. I think mainstreaming makes classroom learning difficult for the teacher and the other students. I say this as a parent." Caren.
ZUCKERWell, mainstreaming is not for everyone. And the reason I sent my son to a mainstream school is 'cause he didn't fit anywhere and that's why he goes to school with someone with him every day, because he didn't fit into a school or a private school or a school that could teach both academically and autism, which is why I said before I need to catch up with him on the life skills. There are schools that -- there are special schools that teach ABA and they're exclusive self-contained schools. And for some children, that's really where they need to be.
REHMWhen you say he goes to school each day with someone, what does that mean?
ZUCKERHe has an aide in the classroom.
REHMI see. And that aide sort of provides a link between the teacher, your son, the students...
ZUCKERWhen necessary, when necessary.
REHM...your son. I see.
ZUCKERSo basically, it's a shadow. We actually call it a shadow. And so she or he will only intervene if something happens and behaviorally or emotionally, Mickey just can't manage it or he needs the work broken down a little bit more so he can understand it and so he's able to do well in a mainstream classroom.
REHMAnd Robin, what about Nick?
MACNEILNick has just been moved in the Cambridge, Mass. public school system. He's been moved from a mixed class of partly mainstream and partly kids with disability because he wasn't doing so well there and he's been moved into the kind of -- also in the Cambridge system, a school where he's getting more one-on-one attention and more ABA, in fact.
REHMNow, what is the responsibility of the U.S. government in that situation or the state government?
MACNEILWell, it's a combination of both. The mandate, as I described earlier, under the Individuals Disabilities Act requires that they make available -- the public school system make available appropriate -- education appropriate to that disability in the least restrictive environment possible. The mandate does not imply the kind of funding that would enable the overstressed public -- already overstressed public school system in this country with the funds necessary to provide what might be the ideal. And in fact, on tomorrow night's program about "Treatment," because treatment means education, we compare a school that is more typical for autism kids in the Bronx, N.Y. with a recently founded charter school, found it as an example of what the ideal treatments might be, also paid for in the public system.
ZUCKERAnd also -- and I think with this parent is finding herself in this situation, the law gives you the least restrictive setting that's the most appropriate, not necessarily the best setting for a child...
ZUCKER...which clearly, it is not for him and for many children, there is a lot of bullying that goes on. And the children that are higher functioning and can sort of manage a little bit have a much harder time than the kids that are more disabled, in fact. And bullying and Asperger's and high functioning children with autism, who are more in the community, tend to have a rougher time.
REHMAnd here's an e-mail asking about the status of autism in the rest of the world. Have the numbers increased in the same way? What kinds of treatments are they attempting? Robin.
MACNEILWell, actually, about the rest of the world in general, very little is known. For instance, in South America, as I understand, very little is known. In Western Europe, it's -- the figures are more typical of those in the United States. And in Africa, the man who's here, George Washington anthropologist Richard Grinker, who appeared on our program last night, he says when he's been in Africa, they don't know the word autism and they may describe the behaviors as somebody who is a specialist in medicinal botany or something like that, but they don't use the word. When the word begins to use, maybe they will start fitting people with strange behavior into that definition.
MACNEILBut he's recently done a study in Korea -- in South Korea using a different system than the Centers for Disease Control uses here. The CDC counts people who have been diagnosed and have been enlisted for services. What he did was, with colleagues from other countries, went to South Korea and went to schools and looked -- asked the teachers what behaviors they'd noticed and looked for at risk students there. And they found -- when they confirmed that with proper diagnosis, they found higher numbers than are being found here.
ZUCKERWell, I think it's important to say that most of the scientists and researchers in the country do not believe that it's just that we're counting differently. Most of them believe that we can account for about 50 percent with wider diagnosis and the definition changing, but that there's another 50 percent that we really don't know and we believe that there are more children with autism than ever before.
REHMAll right. To San Antonio, Texas. Andrea, you're on the air.
ANDREAHello. I just wanted to make a quick comment with regard to ABA in the classroom. Our son has a wonderful teacher and gets a curriculum that's based on ABA and has done extremely well. And one concern that I have as a parent, and other parents may face this as well, is the support that our special education teachers lack, as far as having to deal with behaviors in the classroom and deal with collecting data to show improvement and progress, in addition to just so many other things that they have to deal with in that classroom with, say, you know, 12 kids and 2 aides supporting them. So looking at supporting our special education teachers, I think, is something that we really need to look into so that we don't lose our teachers who are helping our children.
REHMI think that's such a good point. And you're listening to "The Diane Rehm Show." To Little Rock, Ark. Tamara, you're on the air.
TAMARAThank you, Diane. I'm an ABA therapist and I work with military children who are on the spectrum. It's a new program offered through the military healthcare. It has been shown that there are more diagnosis of the -- of autism and Asperger's within the military community than within the general population. And my frustration as an ABA therapist is -- you know, is with the schools and their slowness to understand exactly what an ABA therapist does, the services that they can provide. I work with four little boys and one is -- he's higher-functioning and so he does not necessarily sit in a self-contained classroom and I work with him in his preschool classroom and I am there to support the teacher.
TAMARAAnd it took us a while to get on the same track, but now it's very successful. I have brought in things like a picture schedule and he wears headphones to lunch to help with the noise. My problem is, is that because it's preschool, it's fine, but when he starts Kindergarten next year and on, they won't let me in the classroom to help and ABA is not a pullout program. We go in and help these children adjust to their natural environment and when you pull these students out of the classroom, that is not their natural environment.
ZUCKERWell, there's not enough funding, period. There's not enough funding for children with autism. And ABA tends to be one-on-one. We're learning that we can do it with -- it doesn't have to be one-on-one, but there are so many children with autism that are not getting the treatment they need and we've known -- we've known that ABA works with these kids and we just -- all across the country, there are not enough schools, there are not enough teachers and I think these teachers are the unsung heroes of our society really.
REHMRobin, how close do you think we are to finding the cause of autism?
MACNEILThat is tonight's program in our series. And some years from finding, but there's four scientists who are on our program tonight who are at the leading edge of this research say that a lot of progress has been made, but here's what they've found out. It is not a cause. The idea -- when the huge strides were made in discovering the human genome about 10 years ago, the idea was perhaps they would quickly find a genetic solution, a silver bullet, some said. It hasn't been. They've found many, many genes that may be involved with some environmental impact, but they're finding genes that the parents don't have that exist in the children because of what they called de novo or new mutations in the eggs or the sperm cells of the parents, which produced genes in the children the parents don't have.
REHMFinally, will the series be available online?
MACNEILIt is available online now.
REHMEven after it's finished?
ZUCKERThere's also -- there'll also be a DVD of the entire series.
REHMTerrific. Caren Zucker, she's a journalist and television producer, Robin MacNeil, journalist and author. Congratulations on this series. Thank you...
MACNEILThank you, Diane.
REHM...for doing it.
ZUCKERThank you for having us.
REHMThanks for listening, all. I'm Diane Rehm.
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