Monday, August 11, 2008

From Darkness Into Beauty: Dawn Prince-Hughes's Autistic Odyssey (Autyessy*?)

Dawn Prince-Hughes's memoir Songs of the Gorilla Nation is a very short book (my copy has 224 pages, with wide margins and 1.5 line spacing), but it's densely packed with ideas. There are three of those ideas that I intend to tackle in this post (a fourth will get a post all its own): first, the effect of having or not having a diagnosis on an autistic's emotional well-being; second, the usefulness (and increasing availability!) of alternative methods of getting training in one's field for people who might not be able to handle a traditional college experience; and third, the astonishing degree of empathy Prince-Hughes demonstrates in her writing about gorillas and other apes. That empathy calls to mind Temple Grandin's gift of understanding domestic animals' emotions, behaviors and thought processes, and casts doubt on the common belief that autistic people do not empathize.

Prince-Hughes describes the course of her life as an emergence "from the darkness (of autism) into the beauty of it." Notice that she does not stop at emerging from the darkness; there's a place (a beautiful place) that she is emerging to, and that place is also contained within autism. She matures, she develops, she finds success, purpose, love and family, and she remains autistic.

Here is Prince-Hughes in her Introduction:

When I speak of emerging from the darkness of autism, I do not mean that I offer a success story neatly wrapped and finished with a "cure." I and others who are autistic do not want to be cured. What I mean when I say "emergence" is that my soul was lifted from the context of my earlier autism and became autistic in another context, one filled with wonder and discovery and full of the feelings that so poetically inform each human life. When I emerged, I learned --- from the gorillas --- far better how I could achieve these things.

Later in the book she speaks of a pattern of unhappiness and alienation that she sees over and over in the childhood memories of other autistics who were diagnosed in adulthood: they (and she) experienced childhood and young adulthood as long stretches of "isolation, confusion and depression" occasionally interrupted by "islands of happiness." The undiagnosed autistic child, Prince-Hughes thinks, is utterly alone in the world, knowing he or she is very different but not knowing there is anyone else like him or her.

I can assure you that not only does the autistic person always know they are different, but they suffer deeply from not knowing why. While they try to come to understand themselves without having a name for their condition, other people definitely are labeling them --- and usually without the compassion that real education would bring.

As someone who got a diagnosis fairly early (I was five, and have no memory of it), I experienced the opposite of this kind of what's-wrong-with-me angst. I knew, from early on, that I represented a very rare and special kind of person, and that I was a rarity among rarities because of my uninhibited capacity for speech. I remember in third or fourth grade I took part in a TEACCH program for autistic children and their teachers, and being really proud of the fact that I had been a necessary part of these teachers' learning about autism. While there have been times, especially in middle and high school, when I felt stigmatized (in high school I mostly felt like I was unfairly enrolled in special ed --- I was an honor student, took a lot of hard classes and felt like having an IEP diminished that), my experience of myself as autistic is overwhelmingly one of pride. I think that's a direct result of my having known, all my life that I remember, what I was. I had the luxury of reading books about people like me, participating in special programs for people like me, and identifying the particular ways in which I fitted (or didn't fit) the diagnostic criteria.

I think much of what Prince-Hughes calls "the darkness of autism" comes from growing up without a diagnosis: school was an unending nightmare for her because she was socially awkward, had no friends, hostile teachers (and, later, fellow students who beat her up for being lesbian) and a wildly uneven skill set that meant that while she read works of philosophy and literature at home, at school she struggled with basic math and got mostly Fs. Rather than get any special help for her problems (or advanced material for her strong suits), she was just written off by most of her teachers: her third-grade teacher took sadistic pleasure in announcing her failing grades to the class and yelling at her for not doing her multiplication tables. By seventh grade, she was drinking heavily, right on school grounds. Part of this might also reflect the time period in which she went to school: she was born in 1964, and so would have been in elementary school in the early seventies. (IDEA was only implemented in 1975. Today, a diagnosis of autism or Asperger syndrome, coupled with difficulty in certain subject areas, would lead to the child's teachers and parents drafting an IEP to help the child overcome his or her particular weaknesses, but I'm not sure what, if anything, elementary-school teachers in Carbondale, Illinois in 1972 or '73 could have done to help an autistic student).

It was this miserable school experience that convinced Prince-Hughes she could not possibly go to college. She dropped out of high school at age sixteen, roamed around the country for several years living on the streets, in abandoned buildings or with various friends and acquaintances until she ended up in Seattle working as an exotic dancer. From there, following an epiphany she had in the zoo, during her first encounter with a gorilla, she got involved with a local technical school's animal-science program, which allowed her to complete her degree as an independent study while working at the zoo taking care of the animals as part of her training. Later, she was able to earn a PhD in interdisciplinary anthropology from a Swiss university that also allowed her to continue her solitary studies, working one-on-one with a mentor rather than going to classes.

The thing that surprised her most as she was trying to set up this unusual educational pathway was other people's willingness to help her. While her memories of school make the prospect of getting a degree a scary one, she finds everyone she talks to is ready to accommodate her:

I was lucky. People helped me. I made many calls and followed many leads. I found an animal science program in a technical college that allowed me to work externally in mentoring situations. I learned that I could get involved in zoo programs and work with the people who ran them to expand my knowledge. People, to my amazement, assured me that all I had to do was ask, and they would help me learn and achieve my goals.
It was in her work at the zoo that Prince-Hughes began to see some of the gifts autism had given her: acute observational skills, diligence and exactitude in following directions, a tendency to record every detail of the gorillas' behavior, no matter how small --- all of these helped her become an expert on gorillas, which got the zoo's director of research to notice her and agree to help her design research projects that could get her bachelor's and master's degrees in anthropology. Seeing her potential, he volunteered to do the very work that most stymies an autistic person (i.e., navigating "the system") for her.

Her experiences at the zoo also predated her getting an official diagnosis of autism, which suggests to me another factor that probably contributes to the darkness of autism: lack of control over your circumstances. It's in the nature of autism to thrive and excel in really specific, narrowly defined areas, and in all other fields to be totally at sea. It's also in the nature of autism to be extremely susceptible to environmental stressors: you might be a great microbiologist, say, but the moment you try to work for a pharmaceutical company you find the fluorescent lights in the lab drive you crazy and make you unable to concentrate. When Prince-Hughes was going to school, she was being asked to do a lot of things, some of which she did well and most of which she did poorly. She was asked to do each of these things for the same amount of time every day, in an environment that was itself hugely taxing to her. At the zoo, she chose her environment (the zoo was her island of peace within the city, which she hated) and she chose what she'd be doing. She still had some difficulties (she has trouble processing spoken instructions, and often won't do what she is told to do; also, if she is interrupted she won't be able to get back on task), but because she loves the zoo and the work she does so much, she stays motivated to do the best she can. She has greater opportunity to shine at these self-chosen tasks than she did at her school assignments, most of which were inscrutable to her.

Despite all the help she received from humans, it is the gorillas Prince-Hughes credits with showing her her niche. Before she worked at the zoo, she went there just to hang around and watch the gorillas in her spare time. She was immediately drawn to them on the first day she went to the zoo; their slowness and quiet make them more accessible to her than humans, who move quickly and demand eye contact and verbal response. She also empathized with them when people would heckle them and try to get them to do tricks; she remembered people harassing her in the same way. Over time, she moves from just watching them to interacting with them, and forming bonds with them, and she comes to think of herself as having a moral obligation to help gorillas, which provides the impetus for her search for an individualized degree program. (Just getting on the phone and dealing with people is very scary for an autistic person, and it's worse when you're trying to talk to people you don't know about something you have no idea how to do. Prince-Hughes also had additional fears coming from her bad experiences in school. She might not have even gone through with it if she didn't feel an obligation to do so).

The gorillas did more than make Prince-Hughes feel at home and give her a purpose in life: they also taught her much about emotions and social behavior. Because their interactions took place at a slower pace than humans', and did not involve so many stimuli, Prince-Hughes was better able to glean actual information from them. They taught her, among other things, the place of ritual in social life, the need to use body language to give your speech context, the function of humor, the reasons for anger, and the (sometimes) close relationship between anger and love. She learns how the silverback (dominant male and patriarch of a group) sets the emotional tone of a group of gorillas, and takes "silverback ethics" as her own: she vows to be mindful of her moods' effect on those around her, and take care not to cause pain or anxiety in those who love her. The gorillas give her what she had been missing all her previous life: a sense of belonging, both to a group (the gorillas) and to a role (the gorillas' spokeswoman in the human world).

*I have decided that a new genre-defining word is in order. There's already "autiebiography," for autobiographies of autistic people, but some autobiographies have more of a Bildungsroman quality to them, with an emphasis on the author's intellectual development and how they got to where they are now. I have made up the word "autyessy" for autiebiographies dealing specifically with how the author gets from point A (whether it's a physical, intellectual or spiritual Point A) to point B (same). Another criterion, I think, is that the author's experience of autism should change --- like Prince-Hughes's did when she moved out of the darkness of autism into its beauty.


CS McClellan/Catana said...

Thank you for a beautiful review. I had heard of Songs, but didn't really know anything about it. My primary area of interest is intellectual giftedness and creativity, and since discovering that I'm on the spectrum, have been thinking more and more about the possible relationship. I'm caught by the idea of emergence from the darkness because it applies just as well to those who are highly gifted but have no idea that giftedness is the source of both their problems and their emergence into beauty. It's really an emergence from ignorance. We need to make the light brighter so that it can shine into every dark corner.

Lindsay said...

Hi, Catana.

I think you're right, both about giftedness and creativity being linked to autism (and also to a lot of other conditions) and about the "dark" aspects of being different (in whatever way) coming mostly from ignorance of the nature of that difference.

(Obviously, that applies mostly to people who don't have to worry about being targets of violence for their differences --- all the self-knowledge in the world won't do much to help you if that's the case).

With your interest in giftedness and creativity, you might want to check out Daniel Tammet's autiebiography Born on a Blue Day. Tammet is unusual because he is a savant (in math and languages) who also has a very high level of general intelligence. He's making up his own language, which is definitely a creative undertaking!

Anonymous said...

One thing I would like to point out and that is many of the stories in Dawn's books are not her own stories, but other people's whom she took and claimed to be her own. I should know for some of these are my stories, not hers. I was a gorilla keeper and was not happy upon reading this book to see my life stories in there.