July 14, 2011

KRISTA TIPPETT, HOST: I’m Krista Tippett. Today, “Being Autistic and Being Human.” My guests, Jennifer Elder and Paul Collins, a painter and a literary historian, have grappled with autism since the diagnosis of their son, Morgan, in 2002. We’ll step back from controversies over autism causes and cures and explore the mystery and meaning of autism in their family and in history and society. As Paul Collins and Jennifer Elder have discovered, autism is a spectrum that sheds light on human nature, intelligence, and accomplishment.

MS. JENNIFER ELDER: I think that cuts right to the heart of both of our works, that there’s a spectrum, and that we see the world in a completely different way now. You know, it’s not just Morgan. We now see these traits running through our family and through society.

MS. TIPPETT: This is Speaking of Faith. Stay with us.

[Announcements]

MS. TIPPETT: I’m Krista Tippett. One child in every 110 in the U.S. is now diagnosed to be somewhere on the spectrum of autism. This hour, we’ll step back from public controversies over autism causes and cures. We’ll explore the mystery and meaning of autism in one family’s life and in history and society. Jennifer Elder and Paul Collins say that life with their child with autism has deepened their understanding of human nature, of disability, and of creativity, intelligence, and accomplishment.

From American Public Media, this is Speaking of Faith, public radio’s conversation about religion, meaning, ethics, and ideas. Today, “Being Autistic and Being Human.”

The term autism comes from the Greek word for self — autos — a condition in which a person seems quite literally to live in his or her own world. Two physicians described autism and gave it the same name nearly simultaneously in the mid 1940s, though they were an ocean apart. One of them was the Austrian Hans Asperger for whom a form of high-functioning autism, Asperger’s syndrome, is named.

After their son, Morgan, was diagnosed, Jennifer Elder and Paul Collins found a vivid history of autism before it was identified as a unique condition. I spoke with them in 2007. Jennifer, an artist, has authored two books for children and families. Paul, a literary historian, pursued the story of Dr. Asperger and other pioneers, as well as figures like Peter the Wild Boy, a probable case of autism. This child, found living alone in a forest, was studied as the philosophers and scientists of the 18th century reflected on what it means to be human.

As Paul Collins puts it, autism entails both disability and ability. Isolating difficulties with human relationship, for example, can be the flip side of a fierce aptitude for logic and a capacity for intense independent focus. These personality traits run through families and society and underpin fields like engineering, art, and science.

A doctor first suggested that Paul Collins and Jennifer Elder’s son, Morgan, might have autism when he was two and a half, at a routine checkup. Until then, his normal was normal to them.

[Sound bite of music]

MS. TIPPETT: From American Public Media, this is Speaking of Faith, public radio’s conversation about religion, meaning, ethics, and ideas. Today, “Desmond Tutu’s God of Surprises.”

MR. PAUL COLLINS: We really had no basis of comparison because, for one thing, we’d been moving around a lot. So we didn’t have a situation where we could watch someone else’s child developing over the course of several years and actually notice that the — sort of the milestones were progressing really differently for other people’s kids.

MS. ELDER: But, you know, we used to notice that what we just thought was his unique personality, like when he was a baby …

MS. TIPPETT: Yeah.

MS. ELDER: … we used to joke that he was inscrutable, because he would just look at you for a long time without sort of smiling or laughing. And, but we didn’t know that was anything strange about it.

MS. TIPPETT: But I also, I mean toddlers are kind of strange, eccentric beings and inscrutable in a way. And, you know, you also knew that he was smart. And you knew that he was happy.

MR. COLLINS: That was one thing that, yeah, that really threw me off actually was that he, what he had what’s known as cognitive scatter, which is that some of his abilities were quite advanced for his age, or at least progressing, you know, quite typically, and others had barely progressed at all. And, you know, you usually think of developmental delays in a child as being kind of an all-around thing.

MS. TIPPETT: Yeah.

MR. COLLINS: And so when I saw that some abilities were really coming along, I just assumed, “Well, you know, he’s a late talker.”

MS. TIPPETT: Yeah.

MR. COLLINS: “… But, you know, he’s doing so well in all these other things, so things must be going fine.” And not realizing, of course, that that’s really one of the almost defining characteristics with autism that some abilities can actually become quite advanced.

MS. TIPPETT: Right. And I guess what I’m learning and I think you described on so many levels is, it’s not one thing, autism, right? It’s a spectrum of human character and behavior. So you still have to get to know your child and what it means that your child has this diagnosis.

MS. ELDER: And I think that cuts right to the heart of both of our works, that there’s a spectrum, and that we see the world in a completely different way now. You know, it’s not just Morgan. We now see these traits running through our family and through society.

MS. TIPPETT: Mm-hmm.

MR. COLLINS: That was something that really was kind of a turning point for me, too, which was that, you know, I think initially when we had the doctors saying, “Well, you need to have him looked at for developmental delays,” it seemed like something had happened to our child.

MS. TIPPETT: Right.

MR. COLLINS: You know, we had brought him in and he was fine. And then we brought him out of the office and he was not. And it was just very mystifying. And over time, what I came to see was that, yeah, not only is there a broad spectrum of autistic behavior, but, yeah, that because these traits actually run through families, and not in the form of full-blown autism necessarily, but you can see some of the traits very commonly, particularly in male relatives. When I first heard about that and started looking around at my own family, it really transformed my understanding of my family. And, in some ways, people like my brother and my father started to make a lot more sense. And I think that it was the same for Jennifer with her family, as well.

MS. TIPPETT: Well, let’s talk about that. That’s one of the things you write about in the book, that you discovered that, in fact, there is data. There are studies about, not just traits of autism, but professions, right? Engineers and artists and scientists tend to be in families where autism turns up.

MR. COLLINS: Yeah. There’s been really fascinating research on this done by Simon Baron-Cohen at Cambridge University. And what he noticed essentially was that there seemed to be a lot of autistic siblings, in particular, of students of his who were in science-related majors and, you know, math students as well, and engineering students, and that kind of thing. And so initially, he simply looked at, just sort of did an informal study comparing English majors and the rates of autism in their families with a number of science majors. And the science majors that he was looking at had rates that were like five and six times that of autism in their families. Interestingly enough, the English majors had much, much higher rates of manic depression in their families.

MS. TIPPETT: Oh, gosh.

MR. COLLINS: Which is suddenly all makes sense. So, and then when he expanded to studying the broader population, he found that this held up. That actually, when you looked at the professions that family members of people with autism were in, they tended to be in things like accounting, engineering, computer programming, and had very low rates of employment in fields like sales, for instance …

MS. TIPPETT: OK.

MR. COLLINS: … which is all about social contact.

MS. TIPPETT: Right. One way you described this as “solitary professions requiring deep focus and abstraction,” which also includes artists in that category.

MR. COLLINS: Yeah. And there’s actually, musicians were very highly represented in particular, but also visual artists among these families that he was looking at. And the interesting thing about that for me is the first reaction a lot of people have when they hear his research is they’ll say, “Well, sure, my dad’s an engineer.” I mean, in my case, my dad is an engineer.

MS. TIPPETT: OK.

MR. COLLINS: And my brother is finishing a Ph.D. in computer science. And so the reaction you have is, well, there’s a little bit of shock initially, because he’s right. He pegged their professions pretty well.

MS. TIPPETT: Right.

MR. COLLINS: But at the same time, you think, “Well, but they’re not actually autistic.”

MS. TIPPETT: Yeah.

MR. COLLINS: And that’s sort of his point, really, is that these traits in a much less highly expressed form or less over-expressed form, I guess you could say, naturally make people much better fitted for these professions.

MS. TIPPETT: Yeah. And, I mean, you also, among your adventures, Paul, you went to Microsoft.

MR. COLLINS: Strangely enough, it was actually for my first book that it had come out the year before at that point, called Banvard’s Folly, which was a book about sort of failed or forgotten inventors and artists. And so they brought me up to just do a discussion with their employees. And in the middle of all this, as they were inviting me up, all this started happening with Morgan, with his diagnosis. And so I asked them, “Well, you know, while I’m up there, do you happen to have anyone working on autism-related issues?” Because I had heard rather a lot of whisperings among people that there was a fairly major autism community …

MS. TIPPETT: Right.

MR. COLLINS: … in a lot of computing companies. And they said, “Well, yes. We certainly do have a lot going on here in that regard. “For me, the strangest moment there, I was speaking I think primarily with the, what they described as the math wing of Microsoft. So they had a lot of people doing sort of theoretical mathematical work and working the algorithms and things like that. And I was addressing this room and all these people were working on their laptops as I was talking, even before I started talking.

MS. TIPPETT: And so they were looking at the laptops rather than at you while you were speaking? Mm-hmm.

MR. COLLINS: Yeah, for the entire speech. And at first, I thought, “Wow, these are really busy people.”

MS. TIPPETT: Right.

MR. COLLINS: And, but then I realized from some of the questions that they were then asking that they were, in fact, listening to me. And afterwards, I mentioned it to someone. And they said, “Well, they were watching the webcast of you.” I was like, 15 feet away from some of these people. And she said, “Well, that’s just how they prefer to interact.” But, you know, I think, at one level, when you see something like that, you go, “That’s kind of strange.” But at the same time, I think it’s also really great that we live in an age where people who may, you know, I think in the past probably wouldn’t have gone to a lecture like that at all just because of all the social contact that it would’ve entailed, that in the past, it would’ve been just much too uncomfortable or, you know, kind of painful for them to deal with.

MS. TIPPETT: Mm-hmm. And, I mean, again, the point you’ve been making is that it is that very same personality-type set of skills that enables them to do this work somehow.

MR. COLLINS: The way that Simon Baron-Cohen described it to me was he said, “All these professions I look at have a systematizing tendency.” You know, they’re seeking an internal logic within a system. And that lends itself beautifully to fields like mathematics or computing, which, in a lot of ways, is basically a subset of math.

MS. TIPPETT: Right.

MR. COLLINS: And — you know, at the same time, it makes it extraordinarily difficult for them to deal with the highly illogical world of people.

MS. TIPPETT: Yes.

[Sound bite of music]

MS. TIPPETT: You can read a moving essay by the late scientist Stephen Jay Gould about his son with autism at speakingoffaith.org.

I’m Krista Tippett, and this is Speaking of Faith from American Public Media, today exploring autism in one family’s life and in human history and society with Paul Collins and Jennifer Elder. Their first son, Morgan, has autism.

Jennifer’s most recent book, Autistic Planet, evokes a world that imaginatively incorporates some of the motor and sensory traits that can make people with autism say they feel alien in human society. These include rocking, hand-flapping, and extreme sensitivity to sound, touch, and texture. Paul took the title of his book about autism, Not Even Wrong, from a criticism the physicist Wolfgang Pauli used to make of his colleagues. He would suggest that their way of thinking and seeing something was so far off the mark as to be not even wrong. One of the classic characteristics of autism is what researchers call a lack of a theory of mind, an incomplete understanding that other people don’t know what they know, don’t want what they want. Therefore, Paul Collins points out, words like “believe” and “think” and “know” do not mean the same thing in an autistic vocabulary.

MR. COLLINS: Morgan, I think, like any autistic person, really interacts a lot with the outside world. In fact, most of his speech consists of either of demands from the outside world, you know, versus asking for things in a very instrumental way …

MS. TIPPETT: Yeah.

MR. COLLINS: … or of repeating things that he hears, which is a really common tendency that’s known as echolalia that, you know, lines from books or things from songs or things on TV. In a way, his mind is kind of filled with all these cultural artifacts that kind of replays over and over again. So he’s actually, in his own way, he’s really fascinated with the outside world. And he interacts with us. There are times that he really wants us to be sitting with him or to explain something. But it’s entirely on his own terms, you know? When he doesn’t feel like interacting, he simply won’t respond. And you know, you don’t expect that from people, normally. You expect people to at least take a polite interest when you approach them about whatever.

MS. TIPPETT: Right.

MR. COLLINS: And for him, it’s really, you know, either he wants to interact or he doesn’t. And there’s kind of no in-between.

MS. ELDER: You know, I’ve often explained it to people who weren’t familiar with an autistic child that it’s like somebody watching a video and you’re trying to get their attention. But at the worst, they don’t hear you at all or at best you’re sort of bugging them and they try to swat you away.

MS. TIPPETT: Right.

MS. ELDER: And that’s what Morgan’s like all the time. He’s got, sort of a video running in his head. And you really have to get up in there to get his attention.

MR. COLLINS: The funny thing, too, is that I’m kind of like that.

MS. ELDER: Yes.

MS. TIPPETT: Well, again, there’s that spectrum, isn’t there?

MR. COLLINS: Yes. And, I mean, that was one of the really strange moments for me, particularly when I saw Baron-Cohen’s work, was recognizing these traits within myself. And that …

MS. TIPPETT: Like what? I mean, give me an example.

MR. COLLINS: When I’m focused on an object or a project or whatever, it has the effect for me of almost as if I’m turning my ears off. I just don’t hear what’s going on around me. And the ironic thing for me is that I can’t imagine having a career as a historian without having that tendency, you know?

MS. TIPPETT: Right.

MR. COLLINS: Because I’m able to go into archives for hours at a time and just focus. And it’s like diving underwater or something. I just don’t even hear the outside world.

MS. ELDER: And we think this might be part of the connection between autism and what you might call genius, is the ability to focus on something, you know?

MS. TIPPETT: Single-mindedness, yeah.

MS. ELDER: Absolutely. Because in order to come to a conclusion, you may have to think about something without, you know, without your mind wandering for, you know, a terribly long period of time. And Paul can do that. But, of course, when I want to get his attention for a minor matter …

MS. TIPPETT: Yes.

MS. ELDER: … it can be difficult.

MS. TIPPETT: Right.

MR. COLLINS: It’s almost like having to shake me awake or something when I’m working on something. And, and so, I think, you know, what Morgan experiences is a much higher degree of that, but it’s something that’s, I think, helped me a lot in working with him. That I don’t take it personally that he’s somehow ignoring me or something.

MS. TIPPETT: Yeah.

MR. COLLINS: I actually understand.

MS. TIPPETT: When you described Morgan, again, as a toddler, he also had this not uncommon, he had these abilities, right? He knew things. I remember this, there’s a scene in the book where you had somebody testing him and he was running by saying, “Isosceles triangle, rhombus,” right? He’s going through a geometry phase or something. But I wrote in my margins of the book, when I read that, you know, “Where does this come from?” I mean, there’s, there’s some real mystery in this, isn’t it? I mean, across that spectrum, as you’re talking about.

MR. COLLINS: You know, one of the most curious things to watch, really, with Morgan has been, you know, as parents, we can create an environment for him. We try to encourage certain things or just try to provide a rich environment for him to learn in. But he’s very self-motivated in terms of what he decides he wants to pay attention to and what he finds interesting. And if he finds something interesting, he just has this incredible focus upon it, and will develop so quickly.

And I think that’s very common in terms of autistic spectrum-kind of behavior that, you know, Asperger described, you know, people who could do advanced mathematics, among the children of his, who were patients. But if you ask them what their name was, they couldn’t tell you. They didn’t even know now how to respond. And, I mean, it’s sort of an extreme form of it, in a way. But it’s, that really almost epitomizes that, that condition that if there is something that captures their focus, it becomes an immensely powerful tool, in many cases, you know, particularly if one is interested in the sciences or the arts or whatever. But one of the strange things about autism is that it’s very difficult to harness that, you know.

MS. TIPPETT: Right.

MR. COLLINS: I mean, you can try to put things in front of a child and, in the hope that, well, maybe they’ll be really interested in this, and that will be a constructive thing and, you know, perhaps it will be good for them in terms of learning a profession or having a hobby or whatever. But it’s almost impossible to be able to guess what it will be that captures that focus, because they’re really not interested in your judgment of what’s important and what isn’t.

MS. TIPPETT: Right. But, you know, the same thing is true of any child, you know? I mean, we don’t …

MR. COLLINS: Yeah.

MS. TIPPETT: None of us knows what is going to grab our children’s attention or where their talents will be.

MS. ELDER: Morgan is passionate about musical instruments, but he’s equally as passionate about YouTube videos, you know?

MS. TIPPETT: Right.

MS. ELDER: It’s something that seems very trivial to us and just as important as the symphony orchestra to Morgan.

MS. TIPPETT: I see.

MR. COLLINS: And specifically, he’s become fascinated by the, was it the bumpers or whatever, the …

MS. TIPPETT: Logos?

MR. COLLINS: The logos that film production companies run right before a movie or a TV show starts, like the whole Paramount mountain logo and things like that.

MS. TIPPETT: Really?

MR. COLLINS: Or the Universal opening that shows the revolving planet. And there’s a whole community of people that are fascinated. People will put …

MS. ELDER: There are hundreds of these posted on YouTube. And …

MR. COLLINS: Yeah. People compile, like histories of them into videos. And they’re passionate about it.

MS. ELDER: And they rework them. They make their own versions on their computers, and parodies. And we had no idea. You know, it’s funny. We don’t usually think that Morgan has any social influences, but he actually picked this up from another boy at school who happened to be watching these YouTube videos one day.

MR. COLLINS: Another autistic boy.

MS. ELDER: Another autistic child, yeah.

[Sound bite of music]

MS. TIPPETT: Artist and author Jennifer Elder and literary historian Paul Collins, parents of Morgan, who has autism.

Temple Grandin is perhaps the best-known person with autism in the world today. She’s written several books and won wide acclaim for her work to create humane slaughterhouses. The neurologist Oliver Sacks drew the title of his 1995 book, An Anthropologist on Mars, from his profile of Temple Grandin. As Grandin puts it, she “thinks in pictures.” Here’s part of a reflection she offered on her approach to ethics and meaning for our colleagues at NPR’s This I Believe.

MS. TEMPLE GRANDIN: Because I have autism, I live by concrete rules instead of abstract beliefs. And because I have autism, I think in pictures and sounds. I don’t have the ability to process abstract thought the way that you do. Here’s how my brain works: It’s like the search engine Google for images. If you say the word “love” to me, I’ll surf the Internet inside my brain. Then, a series of images pops into my head. What I’ll see, for example, is a picture of a mother horse with a foal, or I think of Herbie the Love Bug, scenes from the movie Love Story, or the Beatles song “Love, love, all you need is love.”

When I was a child, my parents taught me the difference between good and bad behavior by showing me specific examples. My mother told me that you don’t hit other kids because you would not like it if they hit you. That makes sense. But if my mother told me to be nice to someone, it was too vague for me to comprehend, but if she said that being nice meant delivering daffodils to the next-door neighbor, that I could understand. I built a library of experiences that I could refer to when I was in a new situation.

That way, when I confronted something unfamiliar, I could draw on the information in my homemade library and come up with an appropriate way to behave in a new and strange situation.

MS. TIPPETT: Temple Grandin compares her brain to a Google search engine, and the Internet has fostered valuable online communities for people with autism. At speakingoffaith.org, you can explore the community of movie logo enthusiasts that Paul Collins and Jennifer Elder talked about and watch the YouTube videos that captivated their son, Morgan.

Also, check out our staff blog, Pertinent Posts from the On Being Blog, our fresh and fun take on blogging, where we let you into the production process. And download an MP3 of this program for free through our e-mail newsletter, podcast, or website. That’s speakingoffaith.org.

After a short break, more conversation with Jennifer Elder and Paul Collins, including how life with their son with autism makes them think fundamentally differently about what it means to be human.

I’m Krista Tippett. Stay with us. Speaking of Faith comes to you from American Public Media.

[Announcements]

MS. TIPPETT: Welcome back to Speaking of Faith, public radio’s conversation about religion, meaning, ethics, and ideas. I’m Krista Tippett. Today, “Being Autistic and Being Human.” My guests, Jennifer Elder and Paul Collins, are a painter and a literary historian and their first son, Morgan, has autism. In art and writing, they’ve also explored autism in historical, medical, and social perspective. The Centers for Disease Control estimates that one in 110 children in the U.S. falls on the spectrum of autism. This ranges from severe impairment to the high-functioning personality known by some as Asperger’s syndrome.

And somewhere above 10 percent of people across the spectrum of autism exhibit extraordinary skills or talents, often mathematical or artistic in nature. But they may be hindered from applying those productively because of interactive deficits, compulsive motor traits, and sensory sensitivities that also mark their lives.

[Sound bite of the Goldberg Variations]

MS. TIPPETT: This is a recording of the pianist Glenn Gould. Gould hated the sound of clapping and being watched, dressing up for concerts, and shaking hands. He gave up public concerts at the age of 32 and recorded his most famous music alone in a recording studio, often humming unselfconsciously while he played. This 1955 rendition of Bach’s Goldberg Variations is one of the best-selling classical albums of all time.

[Sound bite of the Goldberg Variations]

MS. TIPPETT: Again, Jennifer Elder and Paul Collins.

MR. COLLINS: I think, for me, one of the most curious things to watch with Morgan has particularly been his interest in music, because there seemed to be things with music that he just naturally seems to understand. I’m fairly sure he has perfect pitch.

MS. TIPPETT: And that’s quite common, isn’t it?

MR. COLLINS: Yeah. That turns up a lot with autistic children.

MS. TIPPETT: Right.

MR. COLLINS: And he’ll just pick up tunes by ear and play them on the piano, and that kind of thing that, for example, there are few things that are almost as soon as you hear about it, you just go, that again. And one of them is the, you know, perfect pitch or the ability to pick up things on the piano, like that. Another thing is a fascination, for example, with mass transit systems. A lot, a lot of autistic kids are fascinated by bus schedules and bus numbers and railways.

MS. TIPPETT: And they memorize them, don’t they?

MR. COLLINS: Yeah. They memorize a lot of stuff. There’s actually a tremendous fascination with Thomas the Tank Engine among a lot of autistic kids. And I think it’s because there’s a whole little self-contained universe of this island and all these named engines. And the other thing is too, this occurred to me recently, if you’ve ever seen Thomas the Tank Engine, the trains have faces on them. But they’re not terribly expressive. There’s only, you know, they don’t have hundreds of facial muscles …

MS. TIPPETT: Right. Right.

MR. COLLINS: …the way humans do. They only have a few expressions. And so for, I think, for an autistic child, it’s much easier to interpret the train than it is to interpret people.

MS. ELDER: I remember somebody commenting one time that there are a lot of autistic children who were big fans of Japanese animation or anime. And one of the …

MS. TIPPETT: Oh. Right.

MS. ELDER: … reasons they thought was because in the — these animations, the expressions of emotion are so strong and clear cut, you know.

MS. TIPPETT: Stark. Yes.

MS. ELDER: There’s not a lot of nuance.

MS. TIPPETT: They have wild hair and outfits. But their mouths and their eyes are …

MS. ELDER: Yeah. Yeah. If they’re — they’re either furious or afraid or, you know. And it’s — there’s not a lot of in-between. So autistic kids can watch it fairly comfortably knowing what’s going on. There’s no sort of — there’s nothing subtle to pick up on.

MS. TIPPETT: Mm-hmm. I have also read somewhere that many autistic children are — feel a kind of affinity with characters like Dr. Spock in Star Trek or — I wondered about Commander Data is one of my heroes …

MS. ELDER: Absolutely.

MR. COLLINS: Yes.

MS. TIPPETT: … in Star Trek: The Next Generation. And, I mean, is that true of Morgan or other autistic children you know?

MS. ELDER: He’s a little young for science fiction.

MS. TIPPETT: OK.

MS. ELDER: But absolutely. The fact that you say that you’re a Data fan makes me think you might be one of us, Krista.

MS. TIPPETT: I know. I know, I know, it made me wonder too. Because — and there is in those characters, in Spock and Data, the brilliance and the kind of perplexity at — and in fact, how strange and complicated normal human beings are, right, with the range of emotions and interactions and what a mess that is sometimes.

MR. COLLINS: I think, I mean, particularly when you have a character, like Spock, who’s supposed to be sort of, of both worlds.

MS. TIPPETT: Yes.

MR. COLLINS: You know, he has one foot in the human world, and the other one isn’t. And he’s trying to figure it out and trying to somehow reconcile this. And, yeah, that’s one of the reasons that a lot of autistic people find him to be such a — sort of a sympathetic character, because his situation kind of mirrors their own. They are very much part of our world and, you know, draw from it and actually help make a lot of the things in our world as well. And yet, it doesn’t make a whole lot of sense to them. And particularly the social interactions are just — there is so much to social interactions that can’t really be explained very logically. You just have to intuit them. And when you actually try to sit down and explain it to someone, it doesn’t make a whole lot of sense.

[Sound bite of music]

MS. TIPPETT: Here’s a scene with Spock that takes place around a campfire from the Star Trek movie The Final Frontier.

LT. COMMANDER SPOCK (PLAYED BY MR. LEONARD NIMOY): I believe we are required to engage in a ritual known as the sing-along.

CAPTAIN JAMES T. KIRK (PLAYED BY MR. WILLIAM SHATNER): That’s great. I haven’t sung around a campfire since I was a boy in Iowa. What are we going to sing?

DR. LEONARD MCCOY (AS PLAYED BY MR. DEFOREST KELLEY): (singing) Row, row, row your boat.

CAPT. KIRK: Row, row, row your boat. I love row — do you know row, row, row, row, row your boat?

LT. SPOCK: That song did not come up in my research, Captain.

CAPT. KIRK: The lyrics are very simple. The doctor and I will start it off. And then when we give you a signal, you jump in.

DR. MCCOY: [singing] Row, row, row your boat gently down the stream.

CAPT. KIRK: [singing] Row, row, row your boat, gently down the stream.

DR. MCCOY: singing] Merrily, merrily, merrily lightly down the stream.

CAPT. KIRK: [singing] Merrily, merrily, merrily life is but — merrily, merrily, merrily life — come on, Spock. Why didn’t you jump in?

LT. SPOCK: I was trying to comprehend the meaning of the words.

DR. MCCOY: It’s a song, you green-blooded Vulcan. You sing it. The words aren’t important. What’s important is that you have a good time singing it.

LT. SPOCK: Oh, I am sorry, Doctor. Were we having a good time?

[Sound bite of music]

MS. TIPPETT: I’ve had several conversations over the years about children as little philosophers and little theologians, you know, that in childhood, we start asking these great existential questions — Where did we come from? Is there a god? If there’s a god, who made god? — you know? And also ethical questions like, why do people hurt each other? And I wondered, do you experience those kinds of questions, that kind of side to Morgan?

MS. ELDER: Now, I’m not sure how abstractly he thinks about these things. You know, my feeling — and I won’t speak for Paul since we have different feelings on this — but I feel that we all come into this world with a sort of immediate natural relationship with God. And so that for Morgan, he has that, you know, that’s just the way it’s always been for him. He has that relationship and it’s unaffected by whatever society has to say about it. But I think that we have to introduce ideas of ethics to him, because this sort of thing just simply doesn’t occur to him. He’s certainly not cruel.

MS. TIPPETT: Right.

MS. ELDER: But getting back to the theory of mind, he just doesn’t spend a lot of time thinking about what other people are experiencing.

MS. TIPPETT: Right. So I suppose if he’s not — he can’t really — he’s perplexed by other people’s reactions. Then I suppose, part of being kind or compassionate is about — would be such a complicated interaction, kind of beyond the way he — the way he — his mind works.

MS. ELDER: Absolutely. I don’t think it’s impossible for him. I just think that it needs to be taught, because it doesn’t come to him immediately the way it might come to us.

MR. COLLINS: And one thing we’ve actually had to teach Morgan with his little brother is how to comfort his little brother. And we’re still at the stage where we have to remind him that, you know, if something happens and Bramwell gets upset or if, you know, he falls down and skins his knee, or that kind of thing, that the appropriate thing to do is to ask if he’s OK, or to, you know, to give him a hug or something like that. And otherwise, it doesn’t really occur to him. And not, yeah, not out of any sort of cruel or …

MS. TIPPETT: Right.

MR. COLLINS: … or callous sense of, but just that — I think it really doesn’t occur to him. And that issue of empathy is a very difficult one, I think, for a lot of autistic people, because I think for those particularly not familiar with them, it may seem kind of pointedly callous, when in fact it’s, I think, it kind of comes down to a lack of understanding of the situation a lot of the time. And they don’t see the point in it.

MS. TIPPETT: So, I mean, Jennifer, when you say that you believe that he — that we all come into the world with a relationship with God, but with Morgan, is that just more something that you intuit? I suppose, because he doesn’t talk about things the way non-autistic people talk about things. Is that what you’re saying? It’s just something you believe?

MS. ELDER: Yes. Absolutely. That’s right. And, you know, he doesn’t speak very abstractly about anything. And the sort of window into his soul that we have is usually through a sort of a code that’s based on the books and videos that he consumes. So he often somehow puts together phrases and characters from books to express something. And of course, nothing’s coming to mind right now as I say that. But, you know, he will express something by way of mentioning, “The Cat in the Hat feels sad.”

MS. TIPPETT: Oh. OK.

MS. ELDER: Or that sort of thing. And that’s how he lets us know that he’s thinking about somebody being sad. So we understand that when he’s putting together these, to other people, meaningless expressions that they are his way of interpreting the world, which he does primarily through literature. Because he doesn’t pick up on scenes in person, you know? He picks up through scenes in books and videos what human interactions are about.

MR. COLLINS: I think that human interactions are much too fleeting for him to have a chance to interpret them. Whereas he’ll read a book over and over again, or watch a scene in a video over and over again and can really try to figure it out. Or at least, kind of memorize it as almost a kind of a script for dealing with the world in a way that, yeah, that — in-person interactions, they’re not repeatable in a consistent manner for him. So it’s very difficult for him to figure them out.

MS. TIPPETT: Kind of makes you think that 21st century is not a bad time to be born as an autistic person with all this rich world of media that we have.

MS. ELDER: Absolutely.

MR. COLLINS: Oh, yeah.

MS. ELDER: I have no idea what autistic people — how they spent their time before the computer.

[Sound bite of music]

MS. TIPPETT: Artist and author Jennifer Elder and literary historian Paul Collins, parents of Morgan, who has autism. I’m Krista Tippett, and this is Speaking of Faith from American Public Media. Today, “Being Autistic and Being Human.”

Until recent decades, autism was conflated with very different conditions such as schizophrenia and Down syndrome. Popular theories about autism blamed childhood trauma or bad mothering. Genetic research and brain studies may now gradually unravel the mystery of what causes or triggers autism and how it is related to the same familial and societal traits that give rise to art and science and logic. Jennifer Elder’s book Different Like Me: My Book of Autism Heroes describes historical figures of great achievement, who she and others believe might have been somewhere on the spectrum of autism. Among them are the scientist Isaac Newton, the primatologist Dian Fossey, the comedian Andy Kaufman, and the artist Andy Warhol.

In his book Not Even Wrong, Paul Collins writes this:

“Autists are described by others — and by themselves — as aliens among humans. But there’s an irony to this, for precisely the opposite is true. They are us, and to understand them is to begin to understand what it means to be human. Think of it: a disability is usually defined in terms of what is missing. … But autism … is as much about what is abundant as what is missing, an overexpression of the very traits that make our species unique. Other animals are social, but only humans are capable of abstract logic. The autistic outhuman the humans, and we can scarcely recognize the result.”

MS. TIPPETT: Jennifer, you also have this book Different Like Me: My Book of Autism Heroes, and it includes, you know, people like Albert Einstein and female mathematicians I’ve never heard of, and the first — was it the first African-American scientist and …

MS. ELDER: Yes. And I had never heard of most of these people.

MS. TIPPETT: Yeah. I mean, some of them, I mean Temple Grandin is in there. And there are those amazing stories in this category of savants, which is associated with autism, and that is so fascinating. And, you know — but then, what I also know is that all autistic children are not gifted. And there’s some new research about girls in particular — autistic girls — that they have higher rates of depression and suicide and not necessarily these skill sets that autistic boys often have.

MS. ELDER: And that is something that, you know, Paul and I have sort of spoken of this openly and Paul wrote about it. But Morgan does take antidepressants. And we feel like when he was first diagnosed, we resisted medicating him. And many of the other children that we knew, autistic children, were medicated. But there came a point for him after we made a move across country where he just became very distressed and couldn’t function and …

MR. COLLINS: And actually been kind of building up for a while as he got older. He became more and more sensitive to things that frustrated him in the outside world and more and more overstimulated by them, and really didn’t know how to handle them, and would get very upset about it. And the move really brought that to a head. And so, at that point, it actually wasn’t a difficult decision, because we also had a small child, and Morgan would be thrashing around. And so there was a real physical danger at that point.

MS. TIPPETT: Right.

MR. COLLINS: And he kind of became his old self, and it was sort of a remarkable thing to see. And his old self, not in the sense that it suddenly he was no longer autistic, he’s, you know, very much so …

MS. TIPPETT: Right.

MR. COLLINS: … but he could be sort of happy in the self that he already had been. And that’s also another thing about the era that we live in that makes me feel extraordinarily fortunate.

MS. TIPPETT: Yeah.

MR. COLLINS: I mean, for me, there’s no question in a past era, you know, even just 20, 30 years ago probably. I mean, for one thing he might’ve been institutionalized from the outset.

MS. TIPPETT: Yeah.

MR. COLLINS: But certainly once he became difficult to manage physically and getting really frustrated and that kind of thing, he probably would’ve been institutionalized at that point.

And as it is, that’s still a situation that a lot of parents find themselves brought to where they have an autistic child. Yeah. You were sort of bringing this up earlier, that not all autistic children are going be these wonderful prodigies and sort of miracle stories …

MS. TIPPETT: Right. Composing music and solving …

MR. COLLINS: Right.

MS. TIPPETT: … complex mathematical equations, and — yes. When you talked about Morgan as a toddler, you called him, you know, he was really happy and playful, right, he may not have been communicative …

MR. COLLINS: Yeah.

MS. TIPPETT: … in the way some children his age were. But would you still describe him as happy and playful at eight and a half?

MS. ELDER: Yeah.

MR. COLLINS: Generally, he’s a really happy kid. And usually when frustrations come about, it’s just dealing with the outside world. When he’s doing his own thing, he is actually quite happy. And that’s one of those things I think that’s true for a lot of autistic kids. But by the same token, it’s not true for some. There are some that are just in a lot of distress much of the time and have to deal a lot with issues of depression and things like that.

MS. TIPPETT: Right.

MR. COLLINS: And that is one thing I’m very hopeful about that, you know, autism being a condition with a very strong genetic element and one that clearly shapes your sort of neurological development from the get-go, I don’t know that science is necessarily going to come along with something that will somehow reverse all of that. It seems unlikely in that sense. But I do think that we live in an age where there’s much more hope that some of the more challenging or really difficult aspects of it can at least be mitigated a great deal. And, I mean, that’s already the case to some extent. It makes me feel very fortunate to live in this time.

MS. TIPPETT: Yeah.

MS. ELDER: Yeah. That we’re able to say, you know we have a happy, healthy autistic child, which I think is something that previous generations were …

MS. TIPPETT: Right.

MS. ELDER: … not encouraged to think of it that way.

MS. TIPPETT: Put all those words in a sentence together.

MS. ELDER: Mm-hmm. Mm-hmm.

MR. COLLINS: Right.

MS. TIPPETT: Yeah. I was really struck by these lines, Paul, in your book, as you — I think along the lines we’ve been speaking. So Isaac Newton was another person in Jennifer’s book, completely single-minded person who happened to be focusing, as you say, on something other people found important.

MR. COLLINS: Right.

MS. TIPPETT: And you said, “There are Newtons of refrigerator parts, and Newtons of painted light bulbs, and Newtons of train schedules, and Isaac Newton happened to be the Newton of Newtonian physics and you cannot have him without having the others too.”

MR. COLLINS: Yeah. And I think that’s — I mean, there’s two things that brings to mind, actually. I was in Italy not too long ago. For some reason, the book has actually been really popular over there. And a journalist there asked me, “What if we were able to do genetic screening for autism?” And I said, “Well, that’s actually a really difficult question, because what are you prepared to lose?”

MS. TIPPETT: Yeah.

MR. COLLINS: And, you know, I don’t know if anyone would argue necessarily against addressing issues of really profound autism and of some of the very real and profound difficulties that autistic people face. But those sorts of abilities and the traits that show up in the families around them — yeah, I don’t know if you want to lose those. But the funny thing about that, too, is that it’s very hard to control where that focus is going to go.

MS. TIPPETT: Yes. I mean, how does living with Morgan and the way you’ve had to think about autism — how does that change the way you think about some of these great existential questions or, you know, what it means to be human? How does it change the way you live — think about yourself?

MR. COLLINS: I think I’ve become — I would hope, at least, much more patient and empathetic with other people when they’re acting in ways that I don’t understand. I think that in the past when someone seemed to be acting oddly or seemed to be sort of very socially awkward or just doing things that seems kind of unnerving or didn’t make sense to me, I would think, “Well, what’s that guy’s problem?” and, you know, maybe avoid them. That’s, I think, a natural reaction for anyone to have.

MS. TIPPETT: Yes.

MR. COLLINS: But at the same time, when I see that now, I actually find myself asking that as a genuine question: What is that person contending with, you know? Or what is it like for that person?

MS. ELDER: You know, I want to say that one thing that has come up with us is Morgan really loves the Goodwill, which is not a place that I gave much thought before he came along.

MS. TIPPETT: The Goodwill — the store the …

MS. ELDER: Yes.

MR. COLLINS: Yeah.

MS. TIPPETT: Uh-huh.

MS. ELDER: I have to say that Portland, Oregon, has some of the finest Goodwill’s I have ever experienced in my life.

MS. TIPPETT: OK.

MS. ELDER: And Morgan will ask for the Goodwill. And we love to take him there, because it’s — I never would’ve thought of this before Morgan, but it’s a place that’s very friendly to people with disabilities. And when I’m there, I often see other people with developmental disabilities and people who I might not have noticed before, and now I do. Now I think about …

MR. COLLINS: Yeah.

MS. ELDER: … you know, how to make their world as comfortable as possible. And that’s just a place where they can be, you know, that’s comfortable and accepting. And you really do, when you’re there, you feel like you’re part of a community even if you’ve never seen, you know, if it’s a store full of strangers to you that I — it gives me another perspective on interacting with people who might be invisible otherwise.

MS. TIPPETT: Jennifer Elder is the author of two illustrated books for children and families, Different Like Me: My Book of Autism Heroes and, most recently, Autistic Planet. Paul Collins’ book about autism is Not Even Wrong: Adventures in Autism. He edits the Collins Library for McSweeney’s Books and is an assistant professor of English at Portland State University.

Out of all of the conversations I’ve had, this interview was one of the most difficult to edit. There was so much wide-ranging material to choose from; we had to leave out helpful stories about how Paul and Jennifer initiate contact with their son — and interesting anecdotes about famous personalities like the comedians Andy Kaufman and Sacha Baron Cohen. Here’s your chance to hear what was cut to make this an hour of radio. Download the two-hour uninterrupted conversation and this produced program for free through our podcast, e-mail newsletter, or website, speakingoffaith.org.

We’ve also compiled a collection of writings about autism, including Paul Collins’ essay about the difficult decision he made to put his son on antidepressants. He’s called it the most important thing he’s ever written. Find links to that essay, our staff blog, and much more — speakingoffaith.org.

Speaking of Faith is produced by Colleen Scheck, Chris Heagle, Nancy Rosenbaum, and Shubha Bala. Trent Gilliss is our senior editor.

Special thanks this week to Dr. Andrea Bieberich, Dr. Barbara Luskin, and Dr. Sam Morgan.

Kate Moos is the managing producer of Speaking of Faith. And I’m Krista Tippett.