NEAL CONAN, host:
This is TALK OF THE NATION. Im Neal Conan in Washington.
The vast majority of those diagnosed with autism are children. Whatever the reason, their numbers exploded over the past two decades but eventually, those children will, of course, become adults. And of course, most will outlive their parents.
For an article in The Atlantic on adults with autism, John Donvan and Caren Zucker went back to the beginning. They tracked down patient number one, Donald T.
In 1943, he and 10 others were diagnosed with a condition unlike anything reported so far. The details of their symptoms laid the groundwork for the diagnosis of autism, still used today.
But more important for this conversation, the life of Donald Triplett can now provide a guide of sorts to the question that looms for many families: What happens to our autistic child when we're no longer there to provide care?
If that's you, we want to hear from you. What plans have you made for your autistic son or daughter as they age? Our phone number, 800-989-8255. Email us, firstname.lastname@example.org. You can also join the conversation at our website. Thats at npr.org. Click on TALK OF THE NATION.
John Donvan, a correspondent for ABC's "Nightline," is with us here in Studio 3A. Caren Zucker is a television producer and the mother of a teen with autism, and she's at our bureau in New York. Their article in the current issue of The Atlantic is called "Autism's First Child." And we have a link to it at our website. And thanks to you both for joining us today.
Mr. JOHN DONVAN (Correspondent, "Nightline"; Co-author, "Autism's First Child"): Oh, it's a pleasure.
Ms. CAREN ZUCKER (Television Producer; Co-author, "Autism's First Child"): Thanks for having us.
CONAN: And how did you first, John, find out about Donald T.?
Mr. DONVAN: Well, he's known as Donald T. He's famous in the medical literature. And anybody who has ever studied autism, anybody who has ever gone to school for it, and many parents who did the thing that many parents do, which is to read into autism and where it began, know the name Donald T. because he is the first person described in the first article that says - in this country, in an article published in 1943 in a magazine that's not around anymore, called "The Nervous Child" - Donald T. was the first case.
And he was described as a little boy who was brought in by his parents. At that time, he was 5 years old. It was in 1938, at Johns Hopkins, by an Austrian psychiatrist named Leo Kanner, who had moved to the States and had started the first department of child psychology associated with a hospital - in the nation.
So Kanner was the big guy to go see, and Donald's parents brought him in there, and Kanner did not really know what to make of Donald's behavior because he was very bright in many ways.
He had a lot of interesting skills. He had terrific memory. He had memorized long verses from the Bible. He knew the first 25 questions and answers of the Presbyterian catechism. He knew the names of all of the presidents. And he had perfect musical pitch. You could play a piano note, and he knew exactly what it was.
But he had no interest in people, and he liked to spend his time spinning in circles and spinning objects. And if you tried to change, if you interfered, he would throw wild tantrums. So they didn't know what to make of it.
CONAN: And Caren Zucker, there's also the letter that his father wrote, that has also become famous in the literature.
Ms. ZUCKER: Right. Donald's father, Oliver Triplett, basically had written a 30-page letter to Dr. Kanner, describing Donald's symptoms. And those symptoms that he described in full detail, of the kind of child he was, Oliver had never seen anything like this before.
And he basically described in great detail everything that Donald was doing, and that is now part of how we see - those same descriptions and symptoms are what we see as autism today - you know, all the way back from 1943.
CONAN: And there were Dr. Kanner found 10 other patients with similar symptoms, and wrote the paper that John Donvan was just talking about. This obviously took some time, - came up or adapted a word that had been used in other contexts.
Mr. DONVAN: Yeah, he didn't actually make up the term autistic. That was used already in the field of psychiatry to describe - normally, people who had schizophrenia, that they would withdraw into themselves. They would become about themselves - auto, autistic.
So it was a word like feverish. It described a symptom. But he used the term autistic to describe a whole new set of behaviors that seemed to be linked together, this inability to relate socially.
Ms. ZUCKER: And those behaviors are still the same behaviors that doctors see today in children with autism. Those 11 first cases are the exact types of things that doctors look for today, and it's all behaviorally based.
CONAN: And this must have been particularly poignant for you, Caren, with your - knowing that your son has autism.
Ms. ZUCKER: What was interesting is, in finally meeting Donald, is that every individual with autism is completely different. And the thing they say about people with autism is if you've seen one person with autism, you've seen one person with autism.
But they have similarities, and in meeting Donald, a 77-year-old who's very high-functioning, there were a lot of qualities that my son has. But my son is totally different from him. But he's totally the same. And I guess that's sort of the connection that threads through all, you know, so many people with autism.
CONAN: Well, high-functioning - he plays golf, he drives, he enjoys life. He's a well-known character in the town in which he lives, in Forest, Mississippi. But John, the way you describe it, he was not always high-functioning.
Mr. DONVAN: No. I mean, at the beginning - people talk in terms of high-functioning, low-functioning and classic autism. And his symptoms actually gave birth to the description that fits classic autism.
But throughout his life, he grew. He grew, and his potential was enormous. And he was able to reach, as you say, this little boy who seemed destined to be in those days, what you would do with a child like that was follow the doctor's advice, normally, to put that sort of child in an institution - which Donald was in, briefly.
CONAN: He was in briefly, and he had strong-willed parents - particularly his mother, it seems.
Mr. DONVAN: Who pulled him out.
CONAN: And parents who also, frankly, had resources.
Mr. DONVAN: They were the bankers in town. The mother's family were the financiers in the town of Forest, Mississippi, and they owned the bank of Forest, and they had the resources for that. They had the resources, even, to get on a train and go to Baltimore.
CONAN: Several times.
Mr. DONVAN: Several times. They went four times to Baltimore. But something the dedication of the parents, and something about the environment, just allowed him to grow. Something in the way that you know, we imagine that if Donald were living in a city, he probably wouldn't have done so well. If he had been kept in an institution, he certainly wouldn't have done so well.
Instead, he was living in a small town where everybody knew him, as you said. He was a bit of a character, and he was protected. People in the community respected him.
CONAN: Indeed, they told you if your article harmed him, they would find you.
Mr. DONVAN: A number of people said, do not hurt this guy.
CONAN: Caren, it was interesting. There's a quote in your piece that sets up the situation, again going back to resources: If you are poor and have these kinds of conditions, you are considered crazy. If you're wealthy, you're considered eccentric.
Ms. ZUCKER: Right, and that's the case today as well as it was back then. I think that Donald was incredibly fortunate, but he also - he also had something. He had a certain wiring that enabled him, with the support and with the community and with the resources - all of those things came together to help him grow to be sort of the best he could be.
And that won't happen with everybody, even if you have all the money in the world. But the beginning bases - of having a community and having support and being nurtured - are critical to somebody with autism.
CONAN: John Donvan, you describe a high school life, and he went to the public high school in town - of course, known as the banker's son - but nevertheless, seen as something of a whiz by his fellow students.
Mr. DONVAN: That was the thing, yeah. You would think maybe he would be picked on, and we think at the margins, he was picked on. But we talked with people who went to school with him, and they said, you know, the feeling about Donald was he was a little odd, he kept to himself, but he was a genius at math.
That was the story about him because he can multiply large numbers in his head quite quickly and accurately. And he was always focused on numbers, and he didn't have a lot of friends, but he was given a wide berth. And people we talked with remember him very fondly, and particularly because he had an interesting habit.
If he met you and connected with you, he would give you a number. He would give you the number - you know, 417; that's your number. That would be your number forever. And we met people in town who hadn't seen him in several years, and they told us they remembered their Donald number. And then we went back to Donald and said, so what's Buddy Lovitz'(ph) number - 333; he knew it right away. That was 50 years after giving him...
CONAN: He gave the number, yes. And he is someone, as you say, has grown - grown into a world traveler.
Mr. DONVAN: Amazingly, amazingly, Donald takes a trip somewhere outside the state of Mississippi every month - including to 36 foreign countries, 27 states, some cruises, a safari, some PGA tournaments because golf is his obsession. And that is just not what anybody would ever have predicted.
And he goes with support. He channels himself into tour groups. He works - he gets to a hotel in a country. He knows the hotel it's going to be. He goes to the concierge. He asks: What are some give me a tour that I can go on today.
So it's all within a very controlled environment. And he's not a wanderer because he doesn't go away for more than six days, ever anywhere - very rarely, in any case.
Ms. ZUCKER: That's the autistic part, though, that he only goes for six days. He has to keep to his routine. He's not going to leave home for more than that. And when you ask him why six days - well, six days is long enough.
CONAN: Six days is long Caren, though, as you looked at him - yes, he is different from your son; yes, he has got some similarities with your son. But this must give you tremendous hope.
Ms. ZUCKER: You know, it does and it doesn't because I think that, as I said earlier, all, every individual with autism is different. But he has Donald is able to live independently, and that is you know, with people looking after him in some way, but that's really unusual in terms of autism.
I mean, my son, even though he's high-functioning, he has skills that are different than Donald's, but at the same time sort of quirky. He taught himself four languages on the computer when he was under 5.
But at the same time, I know that Mickey's going to need a certain amount of support and protection, most likely, for the rest of his life. And Donald has been fortunate enough that he really - he can get out on his own. And people would probably diagnose him as Asperger's at this point in his life. But without a doubt, this is a man who had, you know, classic autism.
CONAN: And as you look at your son and his future, you have to make plans for that.
Ms. ZUCKER: Yeah, well, we that's the scary part, and I think that's the scary part for all parents of children with autism - is, what's going to happen when they grow up? And we talk about that all the time.
And we've had to do that since he was 2; what's going to happen when he grows up? And so we've taken it, you know, year by year, and we've been able to plan pretty well until 21.
But there isn't, there really isn't much out there after 21, and so once again, sort of parents are trying to figure out what do we do, because we're not institutionalizing our kids.
CONAN: This is the question we want to explore. Stay with us, 800-989-8255. Email us, email@example.com. If you are the mother or father, sibling of an autistic child, give us a call. What are you planning to do? I'm Neal Conan. John Donvan and Caren Zucker will be with us. This is the TALK OF THE NATION from NPR News.
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CONAN: This is TALK OF THE NATION. Im Neal Conan in Washington.
We're talking about the story of the first person ever diagnosed with autism, now in his 70s. Often when we talk about this condition, the focus is on kids. But Donald Triplett is one of a growing number of adults living with autism.
Parents who worry about what will happen when they are no longer around to help, if this is something you're dealing with, tell us your story, 800-989-8255. Or send us an email, firstname.lastname@example.org. You can also join the conversation on our website, at npr.org. Click on TALK OF THE NATION.
John Donvan and Caren Zucker wrote the article "Autism's First Child" in The Atlantic. There's a link to it on our website. Go to npr.org. Click on TALK OF THE NATION.
Well, let's get some callers on the line, and let's go first to Roy(ph), Roy with us from Long Island.
ROY (Caller): Yes, hi.
CONAN: Go ahead, please.
ROY: I am the father, and my wife is the mother, of three adult sons with autism: Roy Jr., Mike and Glen. We live in Long Island, New York, and they still live at home with my wife and I, and to a greater or lesser extent have been very eloquently stated, people with autism are uniquely different although very often with similar characteristics.
We've been very worried over the decades - we are in our 70s - as to what's going to happen when we transition out of this plane. And we've been fortunate to live in New York and have spent our lives, besides nurturing our family, advocating for people with intellectual and developmental disabilities like autism.
And we have evolved, through the Medicaid waiver with the state of New York, a contract which enables us to stay together as a family. We do sacrifice a great deal of privacy, but we have aides coming into the house to assist us. And the guys go out virtually every day of the week, doing adult-appropriate or fun kinds of things to keep them active and engaged and busy.
CONAN: And Roy, you know better than anybody: These are not kids anymore. These are adults.
ROY: No, there Roy Jr. is 48. They all had birthdays this summer. Mike is 47, and Glen is 43. And the agreement with the state, the funding for the program, provides that when we go on to meet the maker, they will be helped through the not-for-profit agency we use, the staffing in the house to continue the guys living in their own home.
We did not - absolutely refused to institutionalize our sons when they were babies - which was the uniform recommendation at the time by the medical profession. And we didn't really want to dislodge them and put them in a group home.
CONAN: Well, these are...
Mr. DONVAN: Yeah, I mean, first of all, Roy, I think your decision not to institutionalize back in - it sounds like the '60s, helped them enormously. Because if they had been institutionalized, they would probably be far more severely disabled as a result of that environment.
ROY: Not a question about it.
Mr. DONVAN: But I'm also curious. So you say that the state of New York has says they'll take over for you. Do you feel comfortable that they will?
ROY: Well, we can only hope. You know, we have the proper will and guardianship and trust set up, you know, to legally have the step-in. And we can only hope that the agency that we are using, you know, will continue to hire quality staff and provide for them.
I mean, it's not a lot different than if we had simply put them into a community group home. You openly have to rely on the agency to provide the staffing and oversight and cares for your sons or daughters.
We, of course, worry that it's not going to be what we would want or everything we would hope for, but you can only do what you can do.
CONAN: Caren Zucker, those community homes that Roy just mentioned, they are seen as, well, good possibilities by a lot of people, but there are not very many places available.
Ms. ZUCKER: Right, that's the problem. And the fact that you have kept your children at home and created, essentially, a home program for them as adults so that you could keep them at home, is incredibly admirable, and it just has probably been a lot of work for your entire life.
CONAN: Let's see if we can get another caller in. This is Andrea(ph), Andrea with us from Rochester, New York.
ANDREA (Caller): Hello. I guess, you know, when I heard the program, I had to I was so compelled to call in. I have a daughter; my daughter is 12. She has Asperger's syndrome, which of course, is under the autism spectrum, is an autism spectrum disorder.
And some people call it high-functioning Asperger's, I guess - or high-functioning autism. I guess the only difference is that she's extremely vocal and has very good vocal skills, speaking skills, and she does well in school.
And so, you know, you start to think okay, you know, how what's this going to look like? Because she's 12 and of course, if I live forever, everything will be fine. Then you start to realize, maybe that won't happen.
And I found myself listening very, very carefully to people with grown children with autism, because I find myself wanting to pinpoint or identify the factors that lead to the success of their grown children.
One of the things I found interesting was that Temple Grandin is adamant that we do not allow our children to be isolated, that they're out there in the community.
CONAN: Temple Grandin, most people will know - she's been on this program and many others - the autistic woman who helped design a lot of the systems for taking care of animals in slaughterhouses; and a wonderful movie was made about her that appeared this year on HBO.
ANDREA: Yeah, which I was interested to see. So anyway, the point was, the point here, I guess it was, well, what happens when she is an adult? My husband and I find ourselves essentially planning two retirements. One retirement for, you know, her when, you know, of course we're trying for her most independent self. I mean, that is our goal and so is the retirement that, you know, doesn't really have her as kind of so close to us.
And then the other one is, you know, maybe we do purchase two homes, you know, ours and then one right down the street and, you know, maybe we maybe she lives under our roof. We just simply don't know.
And so we're always kind of, in the back of our minds, planning both ways. We're hoping for the best. We're, you know, we're always striving toward most independence, but just, we simply don't know.
CONAN: Caren Zucker, this sounds like a situation that is going to be very familiar to you, the kind of - you just don't know what kind of growth is going to happen.
Ms. ZUCKER: No, you really don't. And I think the other side is, is that individuals with autism - just like, you know, you and I - keep growing and growing. And so the hope is, is that they can become as independent as possible or totally independent.
But there actually is no way of knowing or predicting. So you have to try to plan almost for the worst-case scenario, so that you have a plan if that - that your son or daughter doesn't grow enough to be an independent adult. And in autism, that's more often the case than not.
ANDREA: And I think also, a consideration is what will the - what will society - how will society change to incorporate and accommodate people under the spectrum in my community?
Mr. DONVAN: You mean to incorporate who she is?
Mr. DONVAN: Yeah.
ANDREA: Yeah, I mean, who she is, right, accept her for who she is. And people who are different, in my community, there are group homes, those living situations with scaffolded support, some more, some less - and they're good, but there aren't enough.
And so, you know, I find myself, in the back of my mind, kind of researching and also overtly researching and kind of, you know, looking at that as possibly for her.
CONAN: But as important as that is - and I don't mean to diminish that at all - I found, John Donvan, one of the interesting parts of your article was the idea that we are pretty tolerant as a society of children with autism, and considerably less tolerant of adults with autism.
Mr. DONVAN: Well, as a society, we're more likely to be turned off by seeing an adult with autism, particularly somebody with more profound autism. But even for somebody like this caller's daughter, who sounds as though she has a shot at independence, and she's doing well at school -sometimes Caren and I talk about - the higher-functioning people with autism are kind of in the shark's world.
They're not in a protected environment. They're out in the environment that the rest of us are in, and the way that we treat them can be very, very harsh and brutal. Or, and what happened in Forrest...
CONAN: Because we don't understand.
Mr. DONVAN: We don't understand. And we don't understand that the way we treat them actually can exacerbate their experience and exacerbate their symptoms. Then you look at Forest, Mississippi, where Donald lived in a very, very accepting environment.
And it sounds a little bit "Sesame Street" to say this, but the rest of us have a very large role to play in defining disability. And we can choose to reach out for and recognize the ability in a person who is labeled as having a disability, and root for that and cheer for that. And that will actually diminish the sense and understanding of their having disability.
You know, look at the difference between a person who can't see, who is afforded a seeing-eye dog or not, or some training or not. Our reaction to them is tremendously different. But we haven't made that leap yet with people who are on the autistic spectrum.
CONAN: Because once they're 21, these services kind of things dry up. They have no money for that, isn't it?
Mr. DONVAN: Yeah.
ANDREA: Well, where we do very well...
Ms. ZUCKER: Well, acceptance isn't about money.
CONAN: No. Acceptance isn't about money.
Ms. ZUCKER: Acceptance to the community is about people sort of opening their eyes, and supporting and treating people who are different.
Mr. DONVAN: As simple as: We're having a block party; we hope you're going to be there.
Mr. DONVAN: Instead of...
Mr. DONVAN: Yeah, that's exactly it.
ANDREA: We do very well with the seeing eye dog; we do very well with a guide dog; we do very well with a ramp. We do very well with - we understand interpreters. As a society, we are accepting of all those things. But people who are just a little different, we don't do so well with. And we don't incorporate them. We don't allow for their difference.
CONAN: Andrea, thanks very much for the call. We wish you the best of luck.
ANDREA: Thank you. I think we'll be fine.
CONAN: Good. Here's an email from Dewitt(ph) in Alabama. I have a beautiful, mild, moderately autistic 7-year-old son. He's considered high-functioning but has significant speech delays - two-plus years - and also some delays in motor skills. He's receiving various types of treatment and is making progress. But I worry about what will become of him as he grows to a teen and adult, and especially once my wife and I die. I don't really know what to do to prepare him for his life after my wife's and my own death. His sister is 10 years old. At some point in her late teen years, we'll discuss his condition with her and ask her to help care for my son. Hopefully, we'll be able to provide enough money to care for him if he requires it. Can your guests provide some advice? Caren Zucker, could you try to help her - help him, rather?
Ms. ZUCKER: I think that's the problem, is that it shouldn't be up to the parents to say to the sister, when we're not here, it's your -you're going to need to take care of your brother. But the way things are today, who else is going to take care of him? I mean, it's not that there's nothing out there. There are some good programs out there. They exist. But there's very few of them, and there are going to be hundreds of thousands of children that are going to become adults with autism. And there's just not going to be enough people or places for them to live and to have productive lives.
Mr. DONVAN: And Caren, you've looked into the waiting list for group homes. What is that situation like?
Ms. ZUCKER: Oh, you can wait 30 years. I mean, I think in New Jersey right now, it's a 30-year wait. It's ridiculous. It's not even worth -unless you're severely disabled, you're not going to be guaranteed to get into any kind of residential home for 10 or 20 years.
CONAN: We're talking with Caren Zucker and John Donvan, both broadcasters as well as writers of a - article that appears in this week's issue of the - this month's issue of The Atlantic, called "Autism's First Child." There's a link to it at our website. Go to npr.org. And you're listening to TALK OF THE NATION, coming to you from NPR News.
And let's go to Padma(ph), Padma with us from Fort Wayne.
PADMA (Caller): Hello, Neal. Thank you for taking my call.
CONAN: Go ahead, please.
PADMA: Yes. I'm so excited to be a part of this conversation, Neal. And I have an 11-year-old son, and I'm waiting at the bus stop to pick him up today. And it's just very encouraging to hear about Donald - the gentleman we are talking about, the 77-year-old person that we're talking about - his being independent and traveling around. It's very, very encouraging. But as Caren pointed out, at this time, my concern - or the way I predict the future for my son for now is he needs protection. That's my biggest concern when it comes to him.
He is very vocal. He can speak. He functions independently in his class. He's a fifth grader. He wants to run for the treasurer of the student council. He's in the choir. He attends all kinds of things, but projecting into the future, this is such an uncertain projection. We do not know how he is going to be when he's 18. The only good thing about for now is that he has a family. He has a father and a mother, and his older sibling is 10 years older to him and the so-called normal sibling.
PADMA: And we are making all the resources available to maximize the benefits at this time, Neal. The only - as far as the college, that's how far we have gone. He wants to be an engineer. And so, we live in Indiana, so Purdue is a great engineering school. So at this point, we are planning that when he moves to Purdue, I go with him. He stays and then I stay next to him so that he has his independence. But then, I'm there to be the protection part of the whole equation. And I go to school and do something at that time, so I'm postponing until that time. And...
CONAN: Well, rocket science is good.
PADMA: Yes, probably. I'm not sure what I'm going to do at that time. But that's my plan. And then I'm going to talk to my older son and say, you know what? You have to be a part of the equation when me and Dad are not in the picture.
CONAN: When you say protection, protection from what?
PADMA: I mean, he is a very - I can say very trusting and very naive, very, very bright. He can take care of everything. But then will he lock the door or, you know, that kind of thing? Will he keep the wallet safe, or will he keep his credit card back into the wallet after he's done with the shopping? That kind of thing. I'm not sure because he's in his own world sometimes. He's thinking about, you know, start making a video of something. He's always - and sometimes goes back into his world and then comes back and then goes back. So those are the times when I am thinking, oh, my God. If he's driving and he's in his own world, is he going to follow the red light-green light signal?
Mr. DONVAN: And it's interesting that the kinds of little skills that you just talked about sound to the rest of - could sound to the rest of us quite trivial. Well, of course, he can put his wallet back, and we all forget from time to time. But it's not to understand autism - not to realize that those are the little things that challenge constantly and consistently and need to be training.
Caren, I know we've talked about you working with Mickey just to understand buses, how to get on and off a bus. And then that's not so obvious when you're Mickey.
Ms. ZUCKER: Which is why he won't drive a car.
Mr. DONVAN: He'll never drive.
Ms. ZUCKER: Well, I never say never. But right now, he could, you know, he could see a bus drive by as he's driving a car, and he could drive into the tree. And you just don't know if he's on or if he's off and he's capable of handling the machinery.
CONAN: Padma, when is your son's bus due?
PADMA: Pardon me?
CONAN: When is your son's bus due?
PADMA: My son's bus is coming here in like, five to seven minutes.
CONAN: Well, we're going to have to let you go. Thank you very much, and we appreciate your calling us while you waited for him.
PADMA: Thank you.
CONAN: Thanks very much.
PADMA: Thank you, and I love your show. I listen to it every day for the past 15 years.
CONAN: Well, thank you very much for that. We appreciate it.
PADMA: Thank you, Neal.
CONAN: We're talking with John Donvan and Caren Zucker. Their article is "Autism's First Child." They're talking about training adults with autism how to do daily tasks. When we come back, we're going to be talking with Peter Gerhardt, one of the world's great experts on that subject, and somebody who helps figure out systems and ways to teach adults with autism to do tasks that the rest of us take for granted most every single day. So stay with us. I'm Neal Conan. It's the TALK OF THE NATION from NPR News.
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CONAN: Right now, we're continuing our conversation about adults with autism and the difficult questions many parents, caregivers and siblings face as those patients get older. If this is something you face, what plans have you made for your autistic son or daughter - 800-989-8255. Email us: email@example.com.
And we're going to focus now on how families can begin the plans for the needs of these adults with autism as they age. Peter Gerhardt directs the Upper School of the McCarton School in New York, a program for autistic students. He's also former president of the Organization for Autism Research that - John Donvan and Caren Zucker interviewed him in their article. They're with us, too. But now, Peter Gerhardt joins us from our bureau in New York. Nice to have you with us today.
Mr. PETER GERHARDT (President, Organization for Autism Research): It's wonderful to be here. Thank you.
CONAN: And there's a story that you tell in the article that's in The Atlantic, about a young man with autism who's, in fact, at the funeral of his mother and learns to respond appropriately to the situation.
Mr. GERHARDT: Right. This was Tony(ph) who at the funeral, everybody offers their condolences, and then they hug you. And so Tony learned that okay, this is a good thing; this is what I'm supposed to do. And so shortly thereafter, his neighbor who, being a good neighbor, you know, came over to see how Tony was and brought over some food and again, offered her condolences. Tony thought, quite reasonably in his world, that she wants me to hug her. He went to hug her. She probably gave some signs of not wanting to be hugged. But he didn't read them, hugged her. She went home and called the cops - on the sexual assault by the strange man next door.
CONAN: And it was a case of both of those people misunderstanding.
Mr. GERHARDT: Exactly. I mean, all social interactions - and you know, autism in a nutshell is a disorder of social competence and communication. And we are such a social animal - like, we are amazingly social. So if you don't understand little social nuances, life gets incredibly difficult. So in this case, it was Tony's misunderstanding, but also her misunderstanding that led to what could have been a pretty significant negative situation for both of them but mostly, for Tony.
CONAN: And in this case, it worked out okay. But these kinds of situations, reading some of the descriptions in the article, come up all the time and in not places where there's great drama or - in the checkout line at the supermarket.
Mr. GERHARDT: There are - everywhere we go, we're expected to engage in this social behavior. I often talk about the social rules of riding the elevator. And, you know, most of us, you know, neurotypicals - those of us without autism - don't even think about riding the elevator. But there are rules about where you stand, how close you stand, what do you look at, do you talk to another person, body posture, when you get off and get back on - you know, how many people actually fit into an elevator? That's such a complex, little social world, and it's a 4-by-4 room.
CONAN: And we have all learned that trial and error, and we learn it quickly. Nevertheless, those kinds of social signals? Very difficult to impossible for people with autism to read.
Mr. GERHARDT: Right, in many cases. And this is across the spectrum. And you know, for many individuals who fall into the category of having Asperger's syndrome, it also results in something sometimes referred to us a hidden disability, that the community at large sees them as so capable in so many ways that when they misread social cues, that they're being arrogant or obstinate or argumentative or not paying attention - as opposed to having a neurological disability that makes it hard for them to understand social nuance.
CONAN: And of course, in some situations, those tantrums that we know children have - well, adults can have them, too.
Mr. GERHARDT: Oh, exactly, and that becomes a very serious problem. Much of my work has been with, yeah, individuals with some level of severe, challenging behavior. And it's bottom line - all of that behavior is communication. It's really just finding out what the person wants, what they're trying to tell you. You know, the example I use is, I come home every night and I put my watch, wallet, keys, ring in the same place just because I put it there. And if my wife moves them, I have a tantrum because I can't find my watch, wallet, keys and rings. The same thing happens with somebody with autism. But I just don't know what it is I moved. So I have to try and figure out what it is I moved in order to give him the right skills so that he can tell me what's wrong.
CONAN: We're talking about the adults with autism; 800-989-8255. Let's go to Cynthia, Cynthia calling us from Lawrence in Kansas.
CYNTHIA (Caller): Hi, Neal. It's good to be with you. Thanks.
CONAN: Thanks for calling.
CYNTHIA: I was just going to make the comment - I do - I provide ABA services with kids with autism. And there are some programs that they can get into where they - they're taught, you know, the daily living skills: how to brush their teeth, how to be able to catch the bus. And you know, and a lot of them are in with the public school systems.
CONAN: Can you give us some idea of the challenge of this kind of teaching?
CYNTHIA: Yeah. It's actually - it's extremely challenging, but that's why I like it because as your guest had said earlier - like, every kid with autism, they have about the same, you know, characteristics, but they're all different. So you never know what you're going to get on any given day, or how they're going to be acting. And one thing that they learn one day, they can totally forget the next day. And it can be extremely challenging, but it can also be extremely rewarding.
CONAN: Peter Gerhardt, does the - do the challenges increase or decrease when you start working with adults instead of kids?
Dr. GERHARDT: Well, you know, in some ways, they get more complex, because the skills we expect people to have as adults get more complex. You know, it's not about adding five plus two anymore. You know, it's about knowing how to shop. It's about knowing how to safely cross the street. It's about knowing how to ask somebody out on a date. It's about knowing how to order at a restaurant. It's about knowing how to shower. You know, that's a lot more difficult.
Dr. GERHARDT: At the same time, technology is making the lives of people with autism spectrum disorders easier. Because we can look at - okay, can we have a script for you on your smartphone? Can we, you know, make accommodations on your iPad so that you can follow the bus routes and get to where you want - to do? So there are a lot of technological issues - or benefits that we can look at right now in terms of supporting people.
CONAN: Cynthia, you were going to say something?
CYNTHIA: Yeah. I was just going to say that a lot of kids with autism don't have the theory of mind, and that's really hard to kind of teach. And that's, you know - I mean, I don't think they'd be able to drive very effectively because they don't have theory of mind. And that really helps out in a lot of social situations, you know - being able to put yourself in somebody else's, you know, point of view - and be able to see how other people see things and view things, I think, is one of their biggest challenges when it comes to social support and that sort of thing.
And I also think that, you know, maintaining - you know, the parent maintaining a legal guardianship, although it can be a little expensive, you know, so that the kids don't run into the same traps as adults - or when they're adults - you know, signing over something that they're not supposed to or, you know, whatever, because they can't see the motivations behind other people's actions, and that sort of thing. So...
CONAN: All right.
CYNTHIA: ...yeah, it can be very challenging...
Dr. GERHARDT: If I could...
CYNTHIA: ...but it's very rewarding.
CONAN: Go ahead, Peter.
Dr. GERHARDT: Yeah. I mean, if I could just - I mean, you know, there are big issues with perspective taking, and how do you understand social relationships from somebody else's point of view. But I would also point out as - actually, the mother who was speaking before - of the 12-year-old girl - you know, we've gotten very comfortable as a society with understanding the needs of people with physical disabilities. We have handicapped bathrooms stalls and ramps and wheelchair access, and all this stuff. You know, so we have all these - we have curb cuts for people, you know.
But what we don't have for people with neurological disorders are, in effect, neurological curb cuts - like, we forget that social competence is a two-way street. So while we're teaching this person with autism these skills, we have to teach the rest of society how, then, to interact with this person. Otherwise, the social skills fall on, in effect, deaf ears.
CONAN: I want to ask you about something you mentioned just in passing a minute ago and that was, how to ask for a date. These are adults. These are adults who have, presumably, the same interests as other adults.
Dr. GERHARDT: It's very true. And it's an area of adult life that unfortunately, we have sort of ignored, I think, to the significant detriment of adults on the autism spectrum - again, across the spectrum, the area of human sexuality and personal sexuality and intimate social relationships and, you know, the where and when of appropriate masturbation - all these discussions that we don't have because as a society, as a culture, we don't like talking about this stuff - which just leaves a generation of kids very susceptible to being taken advantage of, to abuse, to mistakes. It's...
Ms. ZUCKER: And to being arrested.
Dr. GERHARDT: And to being arrested.
CONAN: And Caren Zucker, I was just going to ask you about this. I mean, parents approach who - whose children don't have autism approach this like it was a mine field. This must be something that's quite daunting.
Ms. ZUCKER: Yeah. That's when you call up Dr. Peter Gerhardt.
(Soundbite of laughter)
Dr. GERHARDT: I mean, it's such a complicated area of human behavior. And then you add to it the challenge of autism and it - the challenges go up exponentially. But you know, ethically, as a professional, I have an obligation to try and address this to the best of my ability with the people I work with and their families.
Ms. ZUCKER: I mean, I...
CONAN: I was interested to read in the article that yours is not a highly competitive part of the medical profession.
(Soundbite of laughter)
Dr. GERHARDT: No. I have an entire career based upon the fact that nobody else ever wanted my jobs.
(Soundbite of laughter)
Ms. ZUCKER: But I'd like to say one thing about the teacher who called up before. I disagree about the theory taking in the sense that we can teach individuals with autism skills. And don't underestimate what they're capable of learning and what they're capable of doing, and the lives they're capable of living. They can be taught how to do almost anything if you take the time and - to figure out what motivation they need, just like any other motivation that any other person needs.
Dr. GERHARDT: Yeah. I would - and I would add to that - that, you know, the people that I work with who are very verbal will often tell me that we, neurotypicals - those of us without autism - put more limitations on them than their disability does. We're the ones saying, you can't do that. That's too hard; that's too far; that's too dangerous; that's too challenging.
And I think it's the same for individuals who are more challenged by their autism, who have more classic autism, that we automatically default to, he can't learn that - as opposed to, I can't teach that.
(Soundbite of laughter)
Dr. GERHARDT: You know, that's really what the issue should be. It's like, he can learn this if he's taught correctly. You know, it's not that there's any inherent limit on him. I have - you know, Caren mentioned, I have absolutely no predictability about what somebody can or can't do until I try and teach them.
CONAN: We're talking about adults with autism. You just heard Peter Gerhardt, who's the director of the Upper School at the McCarton School in New York, a school for autistic children. Also with us, Caren Zucker and John Donvan. Together, they are the authors of an article, called "Autism's First Child," that appears in the current issue of The Atlantic.
You're listening to TALK OF THE NATION, from NPR News.
And let's go to Monica, Monica with us from Vineland in New Jersey.
MONICA (Caller): Hi. How are you? Thank you. I - my son is 8 years old, and he has Asperger's. And I was just a little bit concerned, I guess, as I listened to other parents call in and talk about Asperger's. And yes, yes, these kids are brilliant, quote, unquote. Yes, they can spout about wonderful, wonderful things in the universe - and math. But again, I guess I felt that the severity of the disability, in terms of being able to live an everyday life now - let alone when they are adults - is daunting.
And by that, I mean that my son can spout on the origins of the universe, but cannot remember - he'll walk out of the bathroom without pulling up his pants; often has walked out of the house partially dressed even though, you know, we remind him and try to grab him. And then he starts screaming and hits us. And you know, so - and hitting, physical aggression is quite severe in Asperger's, at least in our experience.
Their ability to handle the frustration of everyday life is so limited. And I guess I felt like that really wasn't - I guess delved into enough. It is so limited that you can't be in a grocery store and decide that you want to turn around because, wait a minute, there is one more item you need or - because then there's a huge meltdown, screaming, kicking, yelling. Everyone is standing, staring at you - thinking what a spoiled child you have, and what a horrible parent you are.
Dr. GERHARDT: Yeah. If I could comment, I understand completely, and I agree completely. I think part of it has to do with that, you know, we have these terms high-functioning, low-functioning, which I really think we need to abandon because...
MONICA: Yeah, yeah.
(Soundbite of laughter)
Dr. GERHARDT: ...all - right. All they mean is verbal language and IQ. Like...
Dr. GERHARDT: ...and I know some people who are...
MONICA: That's right.
Dr. GERHARDT: Right. So I know some people who have very high IQs who are very low-functioning. But I know some people who are...
MONICA: And that's been our experience. Yeah. Because if you don't have that ability to handle everyday life, you are really stuck.
Dr. GERHARDT: Right. And the other thing I would like to point out is that we need to revisit this idea of adaptive behavior. And adaptive behavior really - they're your life skills. They're how you...
Dr. GERHARDT: ...get through, how you make decisions, how you can deal with going back to the grocery store.
Dr. GERHARDT: You know, I have - since I graduated high school, nobody has ever asked me to factor a binomial equation. I have never done it again.
(Soundbite of laughter)
Dr. GERHARDT: But I spent weeks learning how to do it. Now, I was lucky enough that I could pick up all these other skills on my own.
Dr. GERHARDT: Okay? If I'm not able to pick up all these other skills on my own, and I'm spending weeks trying factoring binomial equation - or if I'm a kid with classic autism, and I'm spending weeks learning how to tie my shoe when instead, I could get a Velcro sneaker and there are 4,000 other things I have to teach, that's where we have to start, you know, not wasting time, and look at where the real needs are. Not these sort of...
MONICA: That is...
Dr. GERHARDT: ...perceptions, you know?
MONICA: That's true.
Dr. GERHARDT: Right. Not this idea of...
Dr. GERHARDT: ...what their needs are.
MONICA: And the real - that's right. And the real needs for Asperger's are just - tremendous deficits in the part of the brain. I'm sure you -I'm speaking to the choir here but, you know, being a mother, I research this all the time, and the mirror neurons that you and I have in our brains that allow us to pick up these subtle social cues when we're 1 year old - to look someone in the eye. If that part of the brain is either missing or badly miswired, that is something that will never, ever, ever come naturally. Ever - no matter how much training you do.
And I guess I just wish that we would start talking honestly about some of that, too. Thank you.
Ms. ZUCKER: Well, I don't want you to think that I was saying that everything's teachable. But everything - you have to try to teach. And that's what your son needs as much as somebody who has no language. He needs to be taught what the rules are. He needs to be taught the skills so that he can manage all these things that are so difficult for him.
CONAN: John Donvan, after reading your article, a lot of parents of children with autism will come to the conclusion that there is one option open to them - that's to move to Forest, Mississippi.
Mr. DONVAN: Well, to move to Forest, Mississippi, and have parents who are bankers. And obviously, that - the smallness and the intimacy of the environment, and the fact that he had financial support, have a lot to do with Donald. And so I know people will read the article and say: Well, this can't be us. But I think Caren and I feel that what that -what we're trying to indicate is that resources make a difference, and that the community makes a difference.
And I know Pete Gerhardt believes very strongly that there are little towns - we have small towns everywhere we go. The bus you ride every day is a small town, and the supermarket that you shop in most of the time is a small town. And if the rest of us who occupy that small town can learn to roll with those who have autism, we're all going to be better off.
CONAN: John Donvan and Caren Zucker, thank you again, both, for your time. Their article is "Autism's First Child." There's a link to it on our website at npr.org. Click on TALK OF THE NATION.
Peter Gerhardt, thank you for your time today.
Dr. GERHARDT: Thank you.
CONAN: And Peter Gerhardt and Caren Zucker, with us from our bureau in New York.
Tomorrow, we're at the National Geographic Society here in Washington to talk about our oceans and ask a disturbing question: Is it too late? Join us for that.
I'm Neal Conan. It's the TALK OF THE NATION, from NPR News.