Air Date: Week of August 13, 2004

PART 1: As a child, Dawn Prince-Hughes was singled out on the playground as the oddball. She had few friends, and teachers grew frustrated by her seemingly lazy and inattentive behavior. She found it difficult to interact with her peers, and was easily distracted by bright lights and loud sounds. It wasn’t until her 30’s that she was diagnosed with a form of autism – a neurological disorder that affects nearly 1.5 million people in the US today. Dawn Prince-Hughes talks about her new book, “Songs of the Gorilla Nation: My Journey through Autism,” and how an interaction at the local zoo helped her relate to the world around her.
PART 2: The conversation continues with Dawn Prince-Hughes, as she recounts her days as a volunteer at Seattle’s Woodland Park Zoo. During her time there, she finds she can set aside her autistic “filters” when it comes to caring for the zoo’s gorillas. In turn, dealing with the gorillas helps her to establish meaningful and lasting relationships for the first time with the people around her.

Transcript

[THEME MUSIC]

CURWOOD: From the Jennifer and Ted Stanley Studios in Somerville, Massachusetts, this is Living on Earth. I’m Steve Curwood with this encore edition.

Think autism, and Raymond may come to mind. Raymond was the autistic savant played by Dustin Hoffman in the Oscar-winning movie “Rain Man.” Raymond was an extremely introverted math whiz with a photographic memory. But if just one of his daily rituals changed in any way, he’d fly off the handle.

[FILM CLIP FROM “RAIN MAN”]

RAYMOND: Dah-dah, dah-dah.

CHARLIE: I had you in there Ray! You are in there!

RAYMOND: Dah dah…

CHARLIE: Defendants, plaintiffs, you had it all! They are in there making legal history, Ray, legal history!

RAYMOND: (MOANING) Ohhh…Oh boy, oh boy.

WOMAN: What is going on out here?

CHARLIE: I’m sorry ma’am, I lied to you. I’m very sorry about that. That man right there is my brother. If he doesn’t get to watch “People’s Court” in about 30 seconds he’s going to throw a fit right here on your porch. Now you can help me, or you can stand there and watch it happen.

CURWOOD: The symptoms for autism are now understood to be much more varied and nuanced than this movie portrays. Close to one and a half million people in the United States have some form of this neurological disorder, and many of them go undiagnosed. Author Dawn Prince Hughes remembers that as a child, her behavior was a mystery to those around her. She describes her condition this way:

Quote, “My parents were often frustrated with me because I would “walk through” or “look through” people as if they weren’t there. This phenomenon had more to do with my unawareness of where my body began and ended than with awareness of other people’s boundaries. It was as if I understood the edges of other people – disjointed as they sometimes were – but I myself had no such edges.”

CURWOOD: Dawn Prince-Hughes has written a book about her life with autism, and how a visit to her local zoo helped her define those edges. Her book is called: “Songs of a Gorilla Nation: My Journey Through Autism.” She joins me now from the studios of WBEZ in Chicago.

Now Dawn, in your book, you say that from the time that you were young, you felt different. What do you mean by that? What made you feel different?

PRINCE-HUGHES: I was aware that I had sensitivities that other people weren’t displaying. And I think it’s important to remember that at base, autism is a sensory processing challenge. And, of course, we know now that it follows along a spectrum. Most people think of “Rain Man” or classic autism counter Syndrome. And it’s only been since 1996 that one could get a diagnosis of high-functioning autism or Asperger’s Syndrome. But what they have in common is this lack of filters that most people are just born with. So it makes it very difficult on a sensory level to cope. And then, of course, because of that, you see secondary problems like inabilities to communicate and so forth.

CURWOOD: So, tell me about a sensory problem that you would have that people without this might not have to face.

PRINCE-HUGHES: When I was a kid -- I don’t struggle with this quite as much anymore -- but when I was a kid, certainly just normal levels of light were very painful. Normal levels of sound could be very painful. And my clothing could even be uncomfortable, normal cotton clothing. So again, you see this kind of sensory over-stimulation just in normal settings.

CURWOOD: So your clothes were uncomfortable so, of course, you’re a kid you’d take them off. And then what happens?

PRINCE-HUGHES: (laughs) Well, that’s when the real magic happened because I would run around naked outside and build forts and almost pretend I was a primate even back then before I knew what it was like to be a primate, so I think it was in my blood.

CURWOOD: So that’s the fun side, but I can imagine wanting to take off your clothes because they were uncomfortable and not being able to handle what other people see as normal levels of light or normal levels of sound could also make things kind of difficult.

PRINCE-HUGHES: It was. Physically it was very, very challenging and uncomfortable constantly. And you know, there’s a strong genetic component in autism spectrum phenomena, and my whole family was really crazy (laughs) so in a way I think that was lucky because we all had these sensitivities and sort of made room for each other.

Where I really got into sensory difficulties though was when I started public school. And, certainly, I don’t think that’s unique to autistic people. I think it can be hard on everybody. But for me it was really excruciating, just the smell of the other kids, having to touch chalk, having to sit still in one position and look forward, having to try to listen to the teacher when the ambient noise was deafening to me. All those things were very difficult to deal with.

CURWOOD: Mmmm. Now, what was it like with your peers? And how did the other kids treat you?

PRINCE-HUGHES: When I was younger, it was just verbal teasing. You know, people would call me “weirdo”, or run away from me like they were going to catch something. And then, later, when I was a teenager it became very physical, and I got beat up all the time and eventually quit school because of that. I don’t think anyone ever meant me any harm. They just certainly weren’t familiar with my problem. Of course, no one was, it wasn’t even in the diagnostic manual yet.

CURWOOD: You know, in a lot of schools, there’s often a kid that has just what you’re describing, they get labeled as “the weirdo.” And it’s not that they aren’t smart, but they don’t do very well academically, they don’t seem to have any buddies. What are the odds that this kid might have this high-functioning autism?

PRINCE-HUGHES: I think the odds are very great. You know, people are starting to be diagnosed in record numbers. And there’s some skepticism that perhaps Asperger’s is being over-diagnosed, just, perhaps, as ADHD was. But then you have to remember that once we have the tools, then it’s very important to identify these kids. And I read once recently that the number could be as high as one in one hundred. That’s a lot of kids that are suffering out there.

CURWOOD: So there you are, in elementary school, you’re living someplace in Montana, and you come home from school -- which is a very difficult place -- but you get home and you get to be yourself and do things that you like. What were your favorite things to do when you were a kid?

PRINCE-HUGHES: I had several, but the one that stands out now, in hindsight, looking at my career path, is that I used to go down to the stream close to our house and build these Paleolithic settlements. So I would build huts of you know, sticks and grass, and I would try to make pottery out of the clay, and I would make necklaces, and try to find plants that I could eat. And so my little Paleolithic village became my refuge.

CURWOOD: Paleolithic. That’s a big word for a little girl.

PRINCE-HUGHES: (laughs) Yeah, well you know, it’s funny, nobody’s brought this up but since I was very, very young, I was I guess what you would call a language savant, and I loved the sound of language. And I remember distinctly really liking the sound of the word “paleolithic.”

CURWOOD: So you were fine when it came to, say, English or social studies, but do math and what would happen?

PRINCE-HUGHES: Well, disaster would happen (laughs). I still don’t balance my checkbook, it’s a nightmare. I just kind of intuitively guess how much money is in my bank account. So, yeah, writing and reading were always natural to me. I talked at a very early age, was reading things like D.H. Lawrence when I was nine, and just really enjoying it, really understanding it. Got into the philosophers like Kant when I was in about seventh grade…

CURWOOD: Kant in seventh grade?

PRINCE-HUGHES: I did. I did, and…

CURWOOD: Oh, my.

PRINCE-HUGHES: (laughs) But math, you know, I was just a complete idiot, it’s embarrassing. I still, I just don’t even go there.

CURWOOD: So what other seventh graders, or even adults, could you find to discuss Kant with?

PRINCE-HUGHES: None. It was very lonely. I mean, even my parents, who certainly were, you know philosophically inclined, I mean I think they were interested in ideas, but we were very poor and they didn’t have time really to do a lot of studying or contemplating. So I really didn’t have anybody to speak of.

CURWOOD: In getting ready to talk with you, Dawn, I noticed that you have a PhD, but also that you were a high school dropout.

PRINCE-HUGHES: Right.

CURWOOD: So tell me, what happened? Why did you drop out of school?

PRINCE-HUGHES: It was a combination of things. I just mentioned that I had been reading Kant in seventh grade, and I became convinced that I needed to tell the truth in all situations regardless of consequence. And I had known for some time that I was gay, and so in this tiny little town in Montana in the summer of my eighth grade year, I applied my Kantian philosophy full-force and came out to the whole town. And so, where I had been really strange and you know, weird, and people called me names and pushed me around before -- then I really became a target. And my parents were concerned that I would be really harmed. And we talked about it and that’s when I decided to leave home.

CURWOOD: So tell me what happens next. You’re how old?

PRINCE-HUGHES: Sixteen. I ended up homeless for about five years off and on, and I self-medicated with a lot of drugs and alcohol, and just wandered around. Wherever I could find people to take me in, or whoever was traveling to the next city, I would go. Eventually I found myself in Seattle, still homeless. I used to go out to the dance clubs to get warm and kind of be around people knowing I wouldn’t have to talk to them. And I had an acquaintance come to me one day and say, you know, you’re a pretty good dancer, you should think about being an erotic dancer. And I said, well, you know, I can’t do that, that’s really kind of beneath me. And she pointed out that I was homeless (laughs).

CURWOOD: You were broke?

PRINCE-HUGHES: Right.

CURWOOD: So, you’re in these -- you don’t have much in the way of friends, but you’re going to these clubs to be with people, but not be with people. Explain that to me a little bit, would you?

PRINCE-HUGHES: I was mostly interested in just being somewhere other than the street, because you know, being on the street is difficult. And so I knew people, I recognized people, and that gave me some distant sense of community. I mean, there’s kind of a myth that autistic people don’t want any community, they don’t have that need for friendship. And that’s not necessarily true. I mean, in some cases it is, but oftentimes it’s just a matter of people not finding the right people to have things in common with. So I would go out and go to these clubs and, you know, feel a certain sense of belonging, I guess.

CURWOOD: So, you would go to these clubs just to dance by yourself, and like, off privately, or for people to watch you?

PRINCE-HUGHES: I wasn’t really concerned whether people were watching me or not. And that was certainly true of my professional dancing, as well. I danced for myself. I liked listening to the steady beat was a lot like, you know, you see autistic people rocking. I mean, that was basically the sensory equivalent.

But I would add that both the dance club and the place where I worked formerly were very industrial atmospheres, very alienating. I had grown up in nature and always had that connection with nature and animals. And so it was with one of my first paychecks from dancing that I decided to go out to the zoo, and, of course, that was the moment that changed my life when I met the gorillas there.

CURWOOD: My guest is Dawn Prince Hughes, author of: “Songs of the Gorilla Nation: My Journey through Autism.” And in just a minute we’ll learn exactly how her encounters with a band of gorillas at the local zoo changed her life. Stay tuned to Living on Earth.

[MUSIC………]

CURWOOD: It’s Living on Earth, I’m Steve Curwood.

If you’re just tuning in, my guest is Dawn Prince-Hughes who has written a book called: “Songs of a Gorilla Nation: My Journey Through Autism.” And as we’ve heard so far, autism can be both a gift and a curse.

Dawn, before the break, you were telling us about the time after you left your home and your family, and, essentially, took to the streets. And we were just about to get to the point when you experienced something that you say, quote “changed your life forever.” Can you take us there now to the Woodland Park Zoo in Seattle? That’s where you volunteered as a zookeeper. Please describe that first day.

PRINCE-HUGHES: Showing up at the gate was difficult, because I knew I was going to have to deal with the ticket taker, and I really didn’t like to interact with people. So that was a challenge, but I was determined. So I went ahead and paid my money and went in, and immediately felt somewhat more relaxed. I looked at the trees and listened to the birds, and wandered around looking at the usual animals. You know, I remember visiting the giraffes and the hippos and things. But then I turned the corner and saw the gorilla family sitting there, and had this instant epiphany that these were a sort of people. I guess intuitively I understood they were people that could understand me and that I could understand in turn.

CURWOOD: So then, what did you do?

PRINCE-HUGHES: I sat down and I watched them, and I felt my body relax for probably the first time in my whole life, you know, relaxed to that degree. I felt like I was in good company, real company, immediate company. The gorilla culture is very slow moving and very predictable, and they don’t make a lot of eye contact which, again, reduces that extra level of intensity in communication. And so I just felt as though I had come home.

CURWOOD: Eventually, you got a job at the zoo and in your book you movingly describe perhaps another life-changing moment for you, when your hand is gently touched by a huge silverback named Congo as you’re putting strawberries, uh, in front of his cage. Can you tell me that story and what you think happened in that interaction?

PRINCE-HUGHES: Sure. Congo, my dearest friend ever, who is unfortunately no longer with us, was the gorilla who I think that changed my life the most. I had gotten several different positions at the zoo -- some volunteer, they were related to my schooling, going back to university -- and some were paid. But I was working with Congo in the back, in the office where the gorillas’ night rooms adjoin the office, and lining strawberries up. And, in a very typically autistic fashion, making sure they lined up between the bars absolutely perfectly (laughs). And, of course, his only interest was eating strawberries, right? So he didn’t care what position they were in, so he was eating them much faster than I put them down.

And so while I was absorbed in my task, he caught up to my hand. And as I put a strawberry down, he put his hand over my hand. And I remember just stopping dead still, and looking up into his eyes -- which was significant, because he was face to face with me, you know, inches away, and I was looking into his eyes. And I didn’t feel compelled to turn away. I felt his touch, I really felt his touch. And when people had touched me before, I had constructed so many filters, artificial filters, that I never really understood what it was like to be really touched by another living thing. And it happened in that instant. We stood and looked at each other for a while, and continued to let our fingers touch, and it just felt like five million years of evolution had disappeared, and each of us could walk both ways and meet in the middle.

CURWOOD: You say you had filtered touch in earlier…what do you mean by that?

PRINCE-HUGHES: Almost like bracing for it. If your clothing is painful, then you can imagine what other kinds of pressure would feel like. And I hasten to say though that other autistic people feel that they really enjoy firm touch. They really like to be touched a lot, because, and I think the reason is that, once again, it gives them a sense of barrier, a sense of containment that they don’t usually feel. But that wasn’t my experience. I mean, it wasn’t always painful, but it was rarely spontaneous, and rarely just unequivocally enjoyable.

CURWOOD: Must have made it hard for you to be in relationships with people.

PRINCE-HUGHES: Yes, it was very hard. I sort of approached it from a robotic point of view, I guess. I did date people, uh, I think mostly for the intellectual challenge of figuring out how to do it (laughs). But I didn’t understand what I was supposed to be feeling really until I met my current partner.

CURWOOD: Now, sometimes, as I understand it, people with Asperger’s Syndrome are also described as having a non-verbal learning disability. That is, they don’t read non-verbal cues very well. I’m wondering if that’s something that you experienced at all.

PRINCE-HUGHES: Yes it is, and I think we have to back up a step and ask what the origin of that problem actually is. I believe that it again stems from a sensory processing challenge. Because if all of your energy is going into putting order, imposing order on the chaos, the sensory chaos around you, you’re not going to be able to pay attention.

That still happens to me now. I was doing a radio interview I guess last month now, and the guy was wonderful, we were having a great conversation, but they had sound batting along the walls, it was bright blue and it had stripes. And because of the vibrancy of the color, and the way that the stripes gave the optical illusion of motion, I could not track what he was saying, I could not track his facial expressions, I got completely lost. And thank God we were taping and not live (laughs). But yeah, those challenges still occur for me, and certainly they are part of Asperger’s Syndrome.

CURWOOD: I’m wondering if you could talk about the kind of symptoms that you have as a person with Asperger’s, that we haven’t covered so far, and how that has affected your relationships -- particularly now that you have a partner and a child.

PRINCE-HUGHES: I think the one thing that really springs to mind, because it’s so problematic for so many people on the autism spectrum, is the phenomenon of meltdown. Rage attacks. That has had a disastrous effect on my relationships. What happens is that the environment becomes so attacking, so, on a sensory level, so overwhelming, that you basically just tumble down into your deepest animal urges and start to lash out. Once it’s started, it has to run its course and it can be very scary. I’ve never hurt anyone. I’ve thrown things and yelled and cowered in a corner. But I know other autistic people have hurt people, so that comes to mind.

And also, again I hear from parents a lot, what can we do to help our child with Asperger’s or autism spectrum communicate, and I just reassert that sensory problems have to be dealt with before you see progress in any other areas.

CURWOOD: Hmm. And how do you deal with sensory problems?

PRINCE-HUGHES: Just by lessening sensory stimulation. Um, a dark room. I often have to recuperate from giving public talks, for instance. So I’ll go in my room and turn on a red light because the red light screens out the rest of the colors of light on the spectrum. And I’ll turn the heat up because I find heat comforting. I will slip on some silk or maybe get into a sleeping bag that’s made of nylon. So, on all the levels, sensory levels, I just turn everything down. So I urge parents and autistic people themselves to take control in that way, it’s very helpful.

CURWOOD: Now, you were diagnosed with Asperger’s at, what, age 36? So I’m just wondering why did it take so long for you to get this diagnosis, and how did the diagnosis happen?

PRINCE-HUGHES: Well, two reasons it took so long. One, as I mentioned, the diagnosis itself was not available until 1996 when it was finally included in the Diagnostic and Statistical Manual Number Four, which is what mental healthcare providers use to make diagnoses. So that was reason number one. Reason number two, you do find on the spectrum that people often will implement their intelligence to cope and learn strategies to blend in a little better.

It’s interesting, the way I got my diagnosis. I mentioned rage attacks and, well, I had them a lot. And my partner said, look, figure out what’s going on or I’m leaving. And I knew I couldn’t let that happen because we had a son by then, and my family was the most important thing in the world to me.

So I did a lot of research and determined that I had Asperger’s Syndrome, called my mother and father and my sister and everyone who ever knew me, and interviewed them for hours getting a history of my symptoms. And then I cross-referenced them on the computer with the diagnostic criteria at every age. So I had about an inch-thick stack of papers (laughs) that was my case file. And then I called the psychiatrist, and said…

CURWOOD: Okay (laughs).

PRINCE-HUGHES: (laughs)…and said hi, I need a diagnosis of Asperger’s, I’ve made it very easy for you, when can I see you? And she laughed about that and said she could probably diagnosis me on the phone (laughs).

CURWOOD: I understand that in some cases people with Asperger’s function a lot better if they have kind of a broker, or intermediary in their life. Somebody close to them who can interpret what is going on. How accurate is that?

PRINCE-HUGHES: I think that’s probably pretty accurate. Sometimes it ends up being our partners, who, bless their souls, probably can’t stand to be bored (laughs) so that’s how they end up with us. I’d like to think we offer something in return. But I joke about my partner being sort of Anne Sullivan to my Helen Keller because I get lost still. We’ll go to parties and people will be laughing about something, or say something to me, and I don’t know if it’s to be taken literally or not. So we’ll have debriefing sessions where my partner will have to interpret for me, really. So, yeah, I bet that’s common.

CURWOOD: So, dealing with gorillas, you can’t use verbalizations to communicate with them. I mean, other than some very basic ones, I suppose, a bark or grunt or something. It’s got to mostly be non-verbal.

PRINCE-HUGHES: That’s exactly right. At least so far as the gorillas are not involved in language studies. I mean, certainly, we know that there are gorillas that understand English, they understand sign language. And other apes like chimps and bonobos, orangutans that are involved in language study programs, have an amazing grasp of human language. But yes, it was, for me, with the gorillas at the zoo who were not trained in human language, it was primarily non-verbal communication.

CURWOOD: So I’m wondering if in this process of communicating with them, that there was something special that you learned?

PRINCE-HUGHES: Well, they taught me how to be a human being. They taught me how to be joyful, they taught me how to understand sadness, they taught me how to understand humor among them and among human people. And they also taught me a sense of responsibility. And that has been so important because, even thought it was very sad, I remember sitting there one day with them thinking, okay, they’ve given me my personhood, they’ve given me my humanity as a gift, and now I have to go out. I have to leave them, go out in the world and do something good with my life.

CURWOOD: Dawn Prince-Hughes is an adjunct professor of anthropology at Western Washington University, and she’s author of “Songs of the Gorilla Nation: My Journey through Autism.” Thanks for taking the time to speak with me today.

PRINCE-HUGHES: Sure, nice talking to you.

 

Links

“Songs of the Gorilla Nation” by Dawn Prince-Hughes, Ph.D.