Podcast Transcript: John Donvan on Living with Autism, Part Two

“Donald is not a cipher or a vegetable or a case in a book. He’s a guy, a human being who’s got some problems, but so do I. So do all of us, you know? I’m lucky when somebody helps me with mine, and he’s been lucky that people have helped him with his.”

John Donvan

The following is a transcript of part two of Gayle Trotter’s podcast interview with John Donvan.  Gayle spoke with Donvan about his compelling article, “Autism’s First Child,” in the October issue of The Atlantic Monthly.  Donvan, a correspondent for ABC News’ Nightline, served as substitute anchor for former anchor Ted Koppel and has won two Emmys, several Overseas Press Club awards, and two Cine Golden Eagles.  Before his position at Nightline, he was the Chief White House Correspondent, Chief Moscow Correspondent, Amman Bureau Chief, Jerusalem correspondent, and a correspondent for the ABC News magazine, “Turning Point.”  Listen to part 1 and part 2 of Gayle and John’s discussion of the surprising life story of the first child diagnosed with autism.

GT: There’s a really interesting story you go into in your article about a guy named Tony. He attends the funeral of his mother, and he learns that you’re supposed to hug people at funerals and sometimes the hugs can be long and intense, and then he goes home and an elderly neighbor brings over some food, as good Southerners are wont to do, and he tries to give her a hug, and she misinterprets his hug and calls the police.

JD: Yeah. She thought it was sexual in nature. And I want to correct this, Tony is more present-day, he’s not part of Donald’s story. We were bringing in an outside story to display the kinds of challenges that adults with autism have because people don’t understand. This actually happened in New Jersey.

GT: Oh, so, not Southern! So New Jersey people bring meals, too. [Laughs.]

JD:  [Laughs.]  Yeah, if they have to. No, this nice lady comes over, just as you say, to give him a meal because his mom had died, and he’d just learned how to hug because he’d been at her funeral. She offered her condolences and to him the word condolence triggered the lesson he had just learned: People say I’m giving you condolences, you hug them. And he put his arms around her; she totally wasn’t expecting that and it apparently made her very uncomfortable. But he held on, and when she finally got free, she felt assaulted and called the police and reported a sexual assault. And the police came and it could have gotten very bad but his brother showed up and explained everything and the woman immediately dropped the charges and understood and the police also were enlightened about it. But that’s an example where in Forest, word was out about Donald. Everybody knew Donald’s story. Everybody knew that if Donald was walking alone down the highway late at night, you should stop and pick him up and get him home because something’s wrong. Or if Donald walked out of a store without paying, you should know that you don’t call the police because he’s stealing; you go and you talk to Donald and say, “Donald, you forgot to pay.” When everybody kind of understands, when the community understands what autism is and also how unthreatening it is, that’s a much better situation than pertained on that street in New Jersey on that day when that woman didn’t know what autism was about. Because as soon as she was enlightened she dropped the charges and got it – if she had known ahead of time, she would have known that the hug from Tony was in all likelihood non-aggressive and non-offensive and she could have known that she had the immediate option to say, “Tony, stop hugging me.” And he would have stopped hugging her. But she didn’t know all that; it was a kind of threatening, scary thing for her.

GT: In your article you talk to a doctor whose mission in life is adult autism; to help these people understand better how to navigate their world. And he does things like teaching them how to hold a credit card to make sure that the magnetic stripe goes through the cashier box the right way. If we don’t have the Forest environment for these adults who have autism, how can we make changes for them in our community?

JD: Peter Gerhardt is the doctor you’re talking about. He’s obsessed with this topic. It’s his mission in life to make the world better for people with autism who are adults. But he thinks that a key part of that process is not just training them, but training us how to receive them. When we told him that we had found Donald in Forest and what Forest was like, he said, “That’s exactly what I’m talking about. We need Forest to be everywhere.”  But Pete’s very much a believer in “it takes a village.” And he says the villages exist in many, many, many different kinds of ways; it’s not just geographical. But he said, probably if you work downtown in a city somewhere, most of you end up going most of the time, pretty much at the same time, to the same sandwich shop every day. For a brief period of time, there’s a collection of people who are in that same place every day. The same thing in your office, and it’s the same thing at your church and the same thing in a gymnasium that you go to, it’s kind of the same people. And if all of us could learn to… first of all, in a large sense to look out for each other – he believes in that – and recognize each other that that will create an environment for when one of the people in the group has autism, to watch out for that person in the way that the people in Forest tended to watch out for Donald. Pete does a lot of training of people with autism and he’s using a lot of technology, so one thing he does now is he teaches adults with autism how to ride the bus: how to get on the bus, how to put the money in, how to get off at your stop. And there’s a process in all this called “fading” and it’s where you as the instructor step farther and farther back into the background so that the person is really doing it without your intervention but that you are kind of around in case something goes wrong. And he’s using Bluetooth technology.

GT: High tech!

JD: So right now as we are speaking, there are people on buses who have an earphone in their ear and Pete is on the bus with them, sitting in the back, watching, and if something goes wrong, he can say something and the person will hear it and know what to do. So he was on a bus with somebody who had been going [through] several days of training and the kid, the young adult, was on the front of the bus and was doing his usual odd behavior; he just had an odd look. Pete was sitting in the back and he could hear everything that was going on. Well, somebody gets on the bus and starts picking on him, starts, “What’s with you? What’re you looking at?” and that kind of thing. And Pete said two other burly guys who were on the bus in work clothes who had become regulars, intervened, and said to the bully, “Hey, this guy’s got autism, back off.”

GT: Oh, that’s great.

JD: And that was Pete’s home run moment for what he wants all of the rest of us to do.

GT: So I think all parents of autistic children worry about that day when their child is an adult and on that bus and someone doesn’t understand their condition.

JD: It terrifies them.

GT: How do those parents have confidence that there’s a future and hope for their child?

JD: They can’t. They can’t for sure right now. Because we’re not set up that way. We’re not used to seeing people – adults – with autism among us. It’s true I think even with people who have mental illness on the street. The vast majority of people with mental illness – and autism, I want to be clear, is not a mental illness, but it does separate in this similar way: it separates you from “normal.” What do we do when we see someone talking to himself on the street? We walk a very wide circle around him. That guy is almost never, ever, ever going to hit us over the head or even talk to us, but we don’t know that yet. We’re spooked by it, and I think we’re somewhat frightened in that way of adults with autism. With children with autism it’s much easier for us to open our hearts, but for adults with autism, somehow we find it threatening, and we haven’t changed from that yet.

GT: And how does that change?

JD: It’s gotta be you and me doing interviews like this and I think the ideal thing would be for more people who don’t have connections to autism to talk to each other about this, so that it’s not just always the parents of the children who have to do all the work educating because they have too much other things that they already have to do.

GT: Yes, because they already have a lot on their plate as it is.

JD: Yeah. For more of us to kind of get the word out. You know the Temple Grandin movie that just won a lot of Emmy Awards on HBO, many of the people involved in the making of that movie are connected to the autism world. They made the movie because they have a connection already. But a movie like that, for the rest of us to see, makes it easier for all the rest of us “civilians” who don’t know autism so well, to just say, “You know what, I’m just going to roll with it.” Temple Grandin is a very, very odd-behaving person to this day. She dresses funny, and she talks funny, and she… she connects very well, but she doesn’t connect like the rest of us. But now she’s such a celebrity it’s kind of an honor to be in her presence. That’s a gigantic, big, big thing for people to not be laughing behind their hands or not wanting to get away but wanting to get TO her. And it really is so much, I think, about the rest of us. That also means giving people with autism jobs, finding the right job, plugging in the right job with the right skill. There’s a man in Denmark who Caren and I have done a piece about for ABC News, who has a son with autism, and this man mortgaged his house to make a point, to start up a software company. And what this company does is it tests other people’s software, line by line by line, going through the code and going through every move that the program can possibly do to make sure things work. And he hires almost exclusively people who have high-functioning autism because he wanted to prove: number one, they’ll show up for work, they’ll get what the job is about, they have tremendous tolerance for small details, tremendous capacity for memory. He didn’t start this up as a charity to occupy these people; he wanted to prove that he could make a profit with employees who have autism, when the match is right. And he’s done it. And he’s coming over here to the U.S. now and he’s going to start some programs over here because people have heard about him and they’re asking him to come.

GT: And how does word get out about that? Through the autism community?

JD: The autism community talks to each other a lot. That is a very viral network all by itself.

GT: Well, we have a big headquarters downtown in DC with the autism organization and I don’t know if they have lots of competing groups or if they’re all kind of centrally connected, but I think it’s very important for the parents to get together and talk to each other. And the story about Donald really is hope for parents.

JD: That’s what I would say the story about Donald is. It’s not certainty, you were asking how can parents be certain and the answer is right now they can’t. Right now the worries are real. But Donald’s story shows a way, and that way has so much to do with the rest of us. So much to do with that.

GT: Well, Donald has such an enviable life I think now.

JD: It turned out well for him. He got lucky. The things that he does now – we didn’t talk about this, but as an adult, only as an adult, he learned some pretty amazing things. He learned how to drive a car in his mid-twenties. He learned how to play golf in his mid-twenties. And in his late thirties he got interested in traveling around the country and ultimately around the world on tours, and he does that. Every month he goes on a trip somewhere.

GT: By himself?

JD: All by himself, yeah. And he drives his own car and he plays a decent game of golf – he’s not great but he plays a decent game of golf. And golf is an obsession for him and people with autism have strong tendencies toward obsessions.

GT: And he has strange routines before he actually swings…

JD: He has a funny golf swing, yeah; a very, very funny golf swing. But the nice thing about the golf club is people have been watching Donald’s odd swing for so long, they don’t even notice it any more. He plays with partners and he says kind of odd things and they say odd things back. Inside a family with autism, the thing that really distinguishes being inside the family and outside the family is that when you’re inside the family you can laugh at it sometimes. You can laugh. And in Donald’s Forest, in the right, gentle way, like when he has a funny golf swing or says something odd, they can chuckle, but it’s not a disrespectful chuckle, it’s a chuckle of recognition.

GT: And love, right?

JD: I guess so, yeah.

GT: In their own way.

JD: They’re proud of Donald in Forest. 

GT: Well, you got a lot of comments about how they were concerned about you coming to Forest and what impact was this going to have on Donald.

JD: Yeah, two Yankees coming to Forest, asking questions about Donald.

GT: [Laughs.]

JD: You know a lot of people in town don’t even – I think they do now because of the article, but I think before they didn’t even really know what the heck it was with him. We were asking a lot of questions, and people would say: You better watch out that you don’t hurt this guy with whatever you’re doing.

GT: And have you heard that [before]?

JD: No, I’d never heard that before. I got an email from somebody afterward, one of those people, who said, “I’m sorry I was so gruff.” And I love the word “gruff” – it gets too little use these days.

GT: Yes, yes. So what is your big takeaway from all the research that you’ve done on this article and the time you spent with Donald?

JD: I think pity is the wrong feeling to have about autism, and sorrowful feelings. It’s true that many aspects of autism can be disabling in obvious ways, but much of disability is defined by our thinking that a disability is a disability. And you can focus on anybody’s ability and find something in common with that – find the humanity in somebody else, in their disability, but it’s easier for us to find it in their abilities. It’s easier for us to find out how much they are like us. And autism for a very long time has been seen as such a separator between those who have it and the rest of us and there’s no question that it is in some ways, but it isn’t in enough ways for us to be thinking that people with autism are so different from the rest of us.

GT: And what about Donald do you see the same in yourself?

JD: He has ambition, he has interests, he has things that he likes to do. Donald is not a cipher or a vegetable or a case in a book. He’s a guy, a human being who’s got some problems, but so do I. So do all of us, you know? I’m lucky when somebody helps me with mine, and he’s been lucky that people have helped him with his.

GT: Well, this is great. Thank you so much, John, I really appreciate this time.

JD: Sure.

GT: This is Gayle Trotter and you’ve been listening to gayletrotter.com.

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